GOOD NEWS!
Praise the Lord! The blood tests show that there is no more multiple myeloma. The prayers and the transplant worked.
BAD NEWS:
I had blood drawn (again) and now not only my red cells are dropping but also my white cells and my platelets. I got a blood transfusion (two units) and I feel better and have a little more energy but the news from my doctor was not good.
She is very concerned that there is still another type of cancer in my body since all the blood counts are dropping. She has scheduled a PET Scan (a nuclear body scan) to check for cancer and a bone marrow biopsy to check for a bone or blood cancer (like lymphoma). She also said that if it's not cancer there is the possibility that my spleen is "eating" my blood. Either one means a lot more medical treatment.
She was ready to release me to go back to work until this all started. We even had a job lined up to start early September. Now, she will not release me until we find out what is causing all these problems.
Ten months without a job plus all the added expenses for medical and being in Oklahoma for the treatments has caused a lot of financial stress. My youngest brother has started a FundRazer account for us to help offset some of the finance stress. He suggested that I post the links here. We would appreciate you sharing this with your social media accounts.
https://fundrazr.com/campaigns/0qSF8/em/43t6ce?utm_campaign=share-campaign&utm_medium=email&utm_source=08-2014
My PET test is Tuesday and when I get my results will let you know what we find out. Please keep praying for us. That is all that will get us through this.
Jean
Saturday, August 16, 2014
Thursday, August 7, 2014
August 7, 2014
I owe all of you an apology for not posting sooner.
My excuse.... I have not felt like doing it.
My last post I was in the hospital to receive my Stem Cell Transplant. I received two chemo treatments for two days and then had one day that they did not do any treatments. On June 6 I received my stem cells. A very simple treatment for what it does. It was like a blood transfusion and lasted about 15 minutes, 2 times.
I was then in the hospital for two weeks. To tell the truth I had a pretty rough time of it. No everyone had as bad a time as I did. I couldn't eat because I got sores in my mouth so bad that I could hardly close my mouth, my tongue felt so thick. The sores finally cleared up but there was a lot of pain until they did. '
Even though we had cut all my hair off, I did loose my hair. It was quite a shock to see it laying on my pillow (although it was not very long, less than an inch). I am really glad that I had already cut it off. I believe that the shock of it falling out, along with the way that I felt, would have been really bad.
They gave me some medicine to help with the discomfort of my mouth, etc and all it did was make me sleep, at least 18 to 20 hours a day. It's hard to build up your strength when you can't stay awake even long enough to take medicine by mouth, much less get up and walk.
While I was in the hospital they changed up my medicine and took me off of some of my medicine, including my gout medicine. When I did think to ask about it they said I didn't need it. Fast forward to the day they were going to discharge me. I was having gout pain in my right elbow and my left foot. Should be able to still get around you would think, but remember that I am totally paralyzed on my right leg. I kept telling the nurses and even the doctor that I was having this pain and what I thought it was. THEY STILL SENT ME HOME AND WITH NO MEDICINE.
We had to have a perfect stranger to help me into the car because I could not stand because of the pain. Then my grandson had to come help me into the house. It took a week before I could stand up and walk, even using my crutches. Very painful, but thankfully it was over in a week. But I did start my gout medicine as soon as I got home.
I couldn't eat and didn't want to drink water. I lost about 20 pounds because of that. Then one day (July 6) I woke up ready to eat and drink. And I haven't stopped since. But I have not put all that weight back on, either.
I finally am starting to get my brain back. It has been a long struggle but I think I am really going to make it. I could not have made it without all the prayers and support from all my friends and family. Thank you all so much.
As I write this I am waiting for blood test results which will determine whether I get released by my doctor so we can go back to work. We are really excited about that. We have been here since November getting treatments and that's a long time. We thought it might be 3 or 4 months and it is has been double that. But the Lord has had us here for a reason, even though we don't know how it all fits into his grand plan.
I will still have to have follow-up blood tests about every month or two as well as some Zometa infusions about one time a month for the next two years. That can be done wherever we are working.
Thank you, all, for being patient and waiting for this update. I am feeling so much better now. I am starting to get out of the house more all the time and my strength will build up and I continue to do that.
Thanks again for all the prayers. I know the Lord has heard all your voices.
A much healthier
Jean
My excuse.... I have not felt like doing it.
My last post I was in the hospital to receive my Stem Cell Transplant. I received two chemo treatments for two days and then had one day that they did not do any treatments. On June 6 I received my stem cells. A very simple treatment for what it does. It was like a blood transfusion and lasted about 15 minutes, 2 times.
I was then in the hospital for two weeks. To tell the truth I had a pretty rough time of it. No everyone had as bad a time as I did. I couldn't eat because I got sores in my mouth so bad that I could hardly close my mouth, my tongue felt so thick. The sores finally cleared up but there was a lot of pain until they did. '
Even though we had cut all my hair off, I did loose my hair. It was quite a shock to see it laying on my pillow (although it was not very long, less than an inch). I am really glad that I had already cut it off. I believe that the shock of it falling out, along with the way that I felt, would have been really bad.
They gave me some medicine to help with the discomfort of my mouth, etc and all it did was make me sleep, at least 18 to 20 hours a day. It's hard to build up your strength when you can't stay awake even long enough to take medicine by mouth, much less get up and walk.
While I was in the hospital they changed up my medicine and took me off of some of my medicine, including my gout medicine. When I did think to ask about it they said I didn't need it. Fast forward to the day they were going to discharge me. I was having gout pain in my right elbow and my left foot. Should be able to still get around you would think, but remember that I am totally paralyzed on my right leg. I kept telling the nurses and even the doctor that I was having this pain and what I thought it was. THEY STILL SENT ME HOME AND WITH NO MEDICINE.
We had to have a perfect stranger to help me into the car because I could not stand because of the pain. Then my grandson had to come help me into the house. It took a week before I could stand up and walk, even using my crutches. Very painful, but thankfully it was over in a week. But I did start my gout medicine as soon as I got home.
I couldn't eat and didn't want to drink water. I lost about 20 pounds because of that. Then one day (July 6) I woke up ready to eat and drink. And I haven't stopped since. But I have not put all that weight back on, either.
I finally am starting to get my brain back. It has been a long struggle but I think I am really going to make it. I could not have made it without all the prayers and support from all my friends and family. Thank you all so much.
As I write this I am waiting for blood test results which will determine whether I get released by my doctor so we can go back to work. We are really excited about that. We have been here since November getting treatments and that's a long time. We thought it might be 3 or 4 months and it is has been double that. But the Lord has had us here for a reason, even though we don't know how it all fits into his grand plan.
I will still have to have follow-up blood tests about every month or two as well as some Zometa infusions about one time a month for the next two years. That can be done wherever we are working.
Thank you, all, for being patient and waiting for this update. I am feeling so much better now. I am starting to get out of the house more all the time and my strength will build up and I continue to do that.
Thanks again for all the prayers. I know the Lord has heard all your voices.
A much healthier
Jean
Wednesday, June 4, 2014
Loopy Me
Good Night/Good Morning,
As I write this it is 11:30 pm, Tuesday, June 3.
I was admitted to the hospital Monday, June 2 at 8:30 am as scheduled. I guess someone told them that I was pretty onery because they put me right across from the nurse's station. The room is pretty small, even for an old hospital room but it is extremely clean and the whole staff so far has been great.
Visitors have to wash their hands upon arrival after checking in with the staff.
When I arrived it took basically all day to get all my lab work drawn and getting all the standard medical questions asked and answered because in between I had to have a chest x-ray taken to make sure my lungs had cleared after having fluid on them the week before. The chest x-ray showed clear but just to be sure they decided to send me to get a CT. Today they told me it was also clear and they would proceed to chemo........
Well, it is now 6:20 pm on June 4 and I will finish this blog. I has so loopy when I started this because they had given me Adavant at 4:30 pm and I couldn't wake up. I thought starting my blog when I was up one of the dozen times during the night that it would keep me awake until their next round to do vital signs but it didn't work.
So, to go back to where I left off... I did get my chemo last night in a 30 minute dose of a hanging drug run through my IV line. But about an hour before they started that they gave me the Adavant, some steroids and Zophran (an anti-nausea medication). I was pretty out of it by 6:30 pm and did get a lot of rest last night but the IV fluids they are giving me also have a drug called Lasix in it. In case you don't know that is a med to get rid of fluids. So they pump it in and then I have to pass it out. Lots of times up and down but never fully awake and certainly not steady on my feet.
Today has been a pretty good day. My sister Stacy came by to see me and brought me a Black with pink polka dots fradora (a hat) to wear when I get up and start walking the halls to keep my energy up. It will certainly make me feel more chipper than the scarves.
I am now almost finished with the second round of chemo and that is the last one! Yeah.
Tomorrow is what they call a rest day. No procedures.
Friday I get my stem cells back. It is done like a blood transfusion so is completely non-invasive.
They tell me I will start to feel the effects of the chemo within 4 to 5 days but it is already working. From the treatment last night about 5:00 last night until they drew blood at midnight my red blood count had already gone down. This will continue to go down until it gets really low. That means the chemo is doing it's job.
More after I get my stem cells back on Friday.
Have a great day and even greater week.
Love to all.
As I write this it is 11:30 pm, Tuesday, June 3.
I was admitted to the hospital Monday, June 2 at 8:30 am as scheduled. I guess someone told them that I was pretty onery because they put me right across from the nurse's station. The room is pretty small, even for an old hospital room but it is extremely clean and the whole staff so far has been great.
Visitors have to wash their hands upon arrival after checking in with the staff.
When I arrived it took basically all day to get all my lab work drawn and getting all the standard medical questions asked and answered because in between I had to have a chest x-ray taken to make sure my lungs had cleared after having fluid on them the week before. The chest x-ray showed clear but just to be sure they decided to send me to get a CT. Today they told me it was also clear and they would proceed to chemo........
Well, it is now 6:20 pm on June 4 and I will finish this blog. I has so loopy when I started this because they had given me Adavant at 4:30 pm and I couldn't wake up. I thought starting my blog when I was up one of the dozen times during the night that it would keep me awake until their next round to do vital signs but it didn't work.
So, to go back to where I left off... I did get my chemo last night in a 30 minute dose of a hanging drug run through my IV line. But about an hour before they started that they gave me the Adavant, some steroids and Zophran (an anti-nausea medication). I was pretty out of it by 6:30 pm and did get a lot of rest last night but the IV fluids they are giving me also have a drug called Lasix in it. In case you don't know that is a med to get rid of fluids. So they pump it in and then I have to pass it out. Lots of times up and down but never fully awake and certainly not steady on my feet.
Today has been a pretty good day. My sister Stacy came by to see me and brought me a Black with pink polka dots fradora (a hat) to wear when I get up and start walking the halls to keep my energy up. It will certainly make me feel more chipper than the scarves.
I am now almost finished with the second round of chemo and that is the last one! Yeah.
Tomorrow is what they call a rest day. No procedures.
Friday I get my stem cells back. It is done like a blood transfusion so is completely non-invasive.
They tell me I will start to feel the effects of the chemo within 4 to 5 days but it is already working. From the treatment last night about 5:00 last night until they drew blood at midnight my red blood count had already gone down. This will continue to go down until it gets really low. That means the chemo is doing it's job.
More after I get my stem cells back on Friday.
Have a great day and even greater week.
Love to all.
Friday, May 30, 2014
It's Time!!! Transplant day - June 5.
Well, it has certainly been a long time since my last post. There has been a lot happening but mostly I have just been too tired to post.
I have been in preparation for the Stem Cell Transplant that is scheduled for June 2. It seems like the time has flown by in some ways and in other ways it really has drug, and seemed more like 6 months instead of 6 weeks.
Right after my last posting I have done a lot of resting. I was really worn out after finishing out tax season and I did nothing but rest for over two weeks. Then we had to make connections with a primary care doctor because my blood pressure was a little too high.
Then my wonderful friend, Katherine Garrison (Cat) offered to make me some pajama/lounging suits for me to wear in the hospital. We spent a couple of days with her in Broken Arrow and had dinner with my brother, Gary Majors and his wife Colleen. But did not get to visit with other friends in the Tulsa area because I was just too worn out.
I had to have another CT scan on my lungs to make sure that the shadow they had seen on the last one was really not a cancer but just possibly scar tissue from the radiation I had received for my lung cancer back in October. This current CT shows that shadow was smaller so that gave us the go ahead to do the transplant.
We attended the High School Sports Banquet with out granddaughter, Cassidy. Her mother was in the hospital and could not attend but Cassidy walked away with 5 awards this year.
I was then put in touch with my transplant coordinator, Patti. She is the only person I have to call if I have questions, problems or any concerns. That makes it really nice. She gets back to me very quickly if she is not available when I call.
I had a port put in a week ago that will be used for stem cell collection and to give me my chemo when I go into the hospital. In case you don't know what this is: They inserted two tubes into my body, one into the ceratoid artery and one into a large vein near my heart. They then both come out at one place in my chest and stick out about 3 inches. This way they are easy to access for medical procedures and I don't have to be stuck any more for blood draws (which will be every day while I am in the hospital).
Then we had High School graduation for our granddaughter, Cassidy. Right after graduation she signed a letter to play basketball for St. Gregory University. I am so proud of her.
Memorial Day - we had a family get together with all our kids and grandkids and great-grandkids except one son and his family who could not come. But there were 26 of us anyway. They played games like volleyball, washers and basketball with different families challenging the others. It was never apparent who won because others would switch sides or come into the game at different times. But we all had a good time (and I got to watch all the activity but sure didn't get invited to play!!! LOL) Then we ate hamburgers and hotdogs and all the fixings.
Then we had a hair cutting party. I invited anyone who wanted to help cut my hair off. I wanted to have it cut before I go in for chemo so that I don't have to watch it fall out. I don't think it would bother me but it might. This is one part of my body that I will still have some control over.
This is the girls that were there along with a couple of the guys before the haircutting party.
After they were finished my granddaughter, Cassidy, too over. She decided I needed a skunk streak so she took it down to the scalp, almost. After the kids got finished then my daughter, Tammy Horn, took over and finished the job, straightening out all the uneven spots, etc.
The funniest part of the day was when the great grandchildren got into the pen with our dog. We had brought him so he could run around but had to put him in our son's dog pens to keep him from under everyone's feet while they were trying to play. So the kids went in with him. The girls were passing dirt through the fence to put from one pail to the other. PRECIOUS AND PRICELESS.
I do have a little fluid built up on my lungs and the doctor put me on antibiotic yesterday but she said it will not delay the transplant.
As I am writing this I am sitting in a large recliner in the Stem Cell Collection department of the Oklahoma Blood Institute. This is the 4th and last day. They want 500 million cells. The first day they got 1.6 million, Wednesday was 1.5 million and yesterday was 1.2. So today I only have to get at least .75 million. That's a piece of cake! The actual stem cell collection is nothing. I just sit around for 4 hours with out getting up. That's the biggest problem. I can't get up and go to the bathroom in that 4 hours.
They draw out the blood, run it through a machine that collects the stem cells, and then put it back into my body with the second tube. And the best part is they warm it before it comes back. It gets cold when they process it. It is much like dialysis.
But they are very good to me here. They provide me with anything to make me comfortable and they are all very pleasant. When I am finished with this collection I don't have any other treatments or anything else until Monday.
Oh, did I tell you, Monday, June 2 I am to be admitted to the OU Hospital in Oklahoma City for my stem cell transplant. They tell me I will be admitted at 8:30 and will receive a full day of chemo Monday and Tuesday. Then I get a day a rest (always thought that was on Sundays but this time it is Wednesday). Then on Thursday I GET MY STEM CELL TRANSPLANT!!!!!!
You are probably like me and don't know much about stem cell transplant. All it will be is like a transfusion except they will use the stem cells that they have been collecting from me this week. They will give me back 1/2 of what they collect. They will freeze the rest. That's it. No big hurrah, no cutting, no going to sleep unless I just want to.
I can had visitors as long as they are not in diapers or are sick. My doctor told me if I didn't want visitors to just say I couldn't have any. But I will be glad to see anyone as long as I feel strong enough. There may be days that I am not up visitors for too long at a time but I will always be glad to see anyone.
My next blog will be from the hospital.
Through it all, God is with me. I have no fear or worries because I know that he will take care of me and anything that I would otherwise be worried about.
Love to all,
Jean
I have been in preparation for the Stem Cell Transplant that is scheduled for June 2. It seems like the time has flown by in some ways and in other ways it really has drug, and seemed more like 6 months instead of 6 weeks.
Right after my last posting I have done a lot of resting. I was really worn out after finishing out tax season and I did nothing but rest for over two weeks. Then we had to make connections with a primary care doctor because my blood pressure was a little too high.
Then my wonderful friend, Katherine Garrison (Cat) offered to make me some pajama/lounging suits for me to wear in the hospital. We spent a couple of days with her in Broken Arrow and had dinner with my brother, Gary Majors and his wife Colleen. But did not get to visit with other friends in the Tulsa area because I was just too worn out.
I had to have another CT scan on my lungs to make sure that the shadow they had seen on the last one was really not a cancer but just possibly scar tissue from the radiation I had received for my lung cancer back in October. This current CT shows that shadow was smaller so that gave us the go ahead to do the transplant.
We attended the High School Sports Banquet with out granddaughter, Cassidy. Her mother was in the hospital and could not attend but Cassidy walked away with 5 awards this year.
I was then put in touch with my transplant coordinator, Patti. She is the only person I have to call if I have questions, problems or any concerns. That makes it really nice. She gets back to me very quickly if she is not available when I call.
I had a port put in a week ago that will be used for stem cell collection and to give me my chemo when I go into the hospital. In case you don't know what this is: They inserted two tubes into my body, one into the ceratoid artery and one into a large vein near my heart. They then both come out at one place in my chest and stick out about 3 inches. This way they are easy to access for medical procedures and I don't have to be stuck any more for blood draws (which will be every day while I am in the hospital).
Then we had High School graduation for our granddaughter, Cassidy. Right after graduation she signed a letter to play basketball for St. Gregory University. I am so proud of her.
Memorial Day - we had a family get together with all our kids and grandkids and great-grandkids except one son and his family who could not come. But there were 26 of us anyway. They played games like volleyball, washers and basketball with different families challenging the others. It was never apparent who won because others would switch sides or come into the game at different times. But we all had a good time (and I got to watch all the activity but sure didn't get invited to play!!! LOL) Then we ate hamburgers and hotdogs and all the fixings.
Then we had a hair cutting party. I invited anyone who wanted to help cut my hair off. I wanted to have it cut before I go in for chemo so that I don't have to watch it fall out. I don't think it would bother me but it might. This is one part of my body that I will still have some control over.
This is the girls that were there along with a couple of the guys before the haircutting party.
We also had a graduation party. My great nephew, Bryant Butler, Jr from Fort Worth was there with his family and he graduates high school June 8 and my granddaughter, Cassidy Clark from Little Axe was there (we were at her house) and she graduated last Friday.
Then the hair cutting started. First was Trentyn (my 5 year old great grandson) and then Karman (my 1 year old great granddaughter). Oh, yes and Ashlyn (my 3 year old great granddaughter).
After they were finished my granddaughter, Cassidy, too over. She decided I needed a skunk streak so she took it down to the scalp, almost. After the kids got finished then my daughter, Tammy Horn, took over and finished the job, straightening out all the uneven spots, etc.
The funniest part of the day was when the great grandchildren got into the pen with our dog. We had brought him so he could run around but had to put him in our son's dog pens to keep him from under everyone's feet while they were trying to play. So the kids went in with him. The girls were passing dirt through the fence to put from one pail to the other. PRECIOUS AND PRICELESS.
I do have a little fluid built up on my lungs and the doctor put me on antibiotic yesterday but she said it will not delay the transplant.
As I am writing this I am sitting in a large recliner in the Stem Cell Collection department of the Oklahoma Blood Institute. This is the 4th and last day. They want 500 million cells. The first day they got 1.6 million, Wednesday was 1.5 million and yesterday was 1.2. So today I only have to get at least .75 million. That's a piece of cake! The actual stem cell collection is nothing. I just sit around for 4 hours with out getting up. That's the biggest problem. I can't get up and go to the bathroom in that 4 hours.
They draw out the blood, run it through a machine that collects the stem cells, and then put it back into my body with the second tube. And the best part is they warm it before it comes back. It gets cold when they process it. It is much like dialysis.
But they are very good to me here. They provide me with anything to make me comfortable and they are all very pleasant. When I am finished with this collection I don't have any other treatments or anything else until Monday.
Oh, did I tell you, Monday, June 2 I am to be admitted to the OU Hospital in Oklahoma City for my stem cell transplant. They tell me I will be admitted at 8:30 and will receive a full day of chemo Monday and Tuesday. Then I get a day a rest (always thought that was on Sundays but this time it is Wednesday). Then on Thursday I GET MY STEM CELL TRANSPLANT!!!!!!
You are probably like me and don't know much about stem cell transplant. All it will be is like a transfusion except they will use the stem cells that they have been collecting from me this week. They will give me back 1/2 of what they collect. They will freeze the rest. That's it. No big hurrah, no cutting, no going to sleep unless I just want to.
I can had visitors as long as they are not in diapers or are sick. My doctor told me if I didn't want visitors to just say I couldn't have any. But I will be glad to see anyone as long as I feel strong enough. There may be days that I am not up visitors for too long at a time but I will always be glad to see anyone.
My next blog will be from the hospital.
Through it all, God is with me. I have no fear or worries because I know that he will take care of me and anything that I would otherwise be worried about.
Love to all,
Jean
Tuesday, April 15, 2014
Bone Marrow Transplant now Scheduled
Did not realize it had been so long since my last posting.
I have been very busy working for H&R Block this tax season as well as getting my chemo shots and having a series of tests run.
Finally, yesterday I got the news that I have been waiting for, it seems like forever.
Transplant is Scheduled. I enter the OU Hospital on June 2 and start receiving heavy doses of Chemo for two days, starting the day I enter the hospital. Then I get what they describe as a "day of rest" with no procedures planned. (I think I will be busy being ill from the chemo, but they didn't say that. LOL)
June 5 - I get my stem cells back. - That is the day I start getting better.
I have been told to expect a hospital stay of 3 to 4 weeks in isolation. I can have my computer with me but there is no internet provided by the hospital. Between now and then I will come up with a solution to that so I will not be cut off from the world. I have to be able to have my email, Skype, and internet. I also plan to have my cell phone with me. Don't know if there is phone in the room but feel certain there will be.
Before I enter the hospital I have a lot of medical to get taken care of.
My medical schedule between now and transplant:
April 25 - Bone Marrow biopsy.
May 6 - CT on my lung to make sure that what they saw a few months back is really benign scaring (just a final check to be sure before the transplant)
May 15 - Get results on the CT.
May 20 - See oncologist and also sign medical consents, etc.
May 22 - Have port/line put into my chest (used to harvest stem sells and for any IV's so I don't have to be stuck so much)
May 23-May 29 - Take shots at home (have to give them to myself or talk Keith into giving them to me) to make more stem cells in my blood. Have to take it every day.
May 27-May 30 - Blood collection (They will run my blood through a machine that will separate out the stem cells and keep them and then give me back my blood, much like dialysis works).
June 2 - Admission to hospital and start chemo.
June 3 - Chemo
June 4 - Rest
June 5 - Get Stem Cells Back!!!!!!!!!!!!!!!!!
I have never been so excited about knowing I will probably be very, very ill. But I can't keep from smiling. I have been working toward this since August when I was diagnosed. That's almost a year.
And the prognosis is wonderful.
I have been very busy working for H&R Block this tax season as well as getting my chemo shots and having a series of tests run.
Finally, yesterday I got the news that I have been waiting for, it seems like forever.
Transplant is Scheduled. I enter the OU Hospital on June 2 and start receiving heavy doses of Chemo for two days, starting the day I enter the hospital. Then I get what they describe as a "day of rest" with no procedures planned. (I think I will be busy being ill from the chemo, but they didn't say that. LOL)
June 5 - I get my stem cells back. - That is the day I start getting better.
I have been told to expect a hospital stay of 3 to 4 weeks in isolation. I can have my computer with me but there is no internet provided by the hospital. Between now and then I will come up with a solution to that so I will not be cut off from the world. I have to be able to have my email, Skype, and internet. I also plan to have my cell phone with me. Don't know if there is phone in the room but feel certain there will be.
Before I enter the hospital I have a lot of medical to get taken care of.
My medical schedule between now and transplant:
April 25 - Bone Marrow biopsy.
May 6 - CT on my lung to make sure that what they saw a few months back is really benign scaring (just a final check to be sure before the transplant)
May 15 - Get results on the CT.
May 20 - See oncologist and also sign medical consents, etc.
May 22 - Have port/line put into my chest (used to harvest stem sells and for any IV's so I don't have to be stuck so much)
May 23-May 29 - Take shots at home (have to give them to myself or talk Keith into giving them to me) to make more stem cells in my blood. Have to take it every day.
May 27-May 30 - Blood collection (They will run my blood through a machine that will separate out the stem cells and keep them and then give me back my blood, much like dialysis works).
June 2 - Admission to hospital and start chemo.
June 3 - Chemo
June 4 - Rest
June 5 - Get Stem Cells Back!!!!!!!!!!!!!!!!!
I have never been so excited about knowing I will probably be very, very ill. But I can't keep from smiling. I have been working toward this since August when I was diagnosed. That's almost a year.
And the prognosis is wonderful.
Saturday, March 15, 2014
March 15 Update
I have not posted here in quite a while because there has been so much going on that things have been changing so fast that I hesitated to post.
Let's see if I can catch everyone up. I had two appointments scheduled for March 6, the first with a pulmonary oncologist to follow up on the Cyberknife treatment that was done in October to make sure all the cancer was killed, and the other with my hematology oncologist to see whether I had started responding to the multiple myeloma treatment.
I figured I would sail through the pulmonary doctor appointment and possibly be told I was not responding to the myeloma treatment in the second.
Well, my world changed drastically when I saw the pulmonary doctor. His name starts with an R but I don't know how to spell his name so I will refer to him as simply Dr. R. He told me that the cancer in my lung was back and that I needed surgery to remove one lobe of my lung. He scheduled me to see a cardiologist the next day to make sure my heart is strong enough for the surgery.
This was brought about because I have been having some chest pains since I started the chemo and since my father died of a heart attack at age 58 and my sister died of a heart attack at age 51 they wanted to make sure it was not my heart. Two tests later I was told that my heart is fine.
Then I went to Dr. Yuen, the hematology oncologist, in the afternoon. She told me that I am responding to the treatments and that if it weren't for the lung problem and the fact that I have an enlarged spleen and excess protein in my blood that I would be ready to start the process for transplant. Yeah, almost.
She ordered an ultrasound of my liver and spleen (although I told her I have had an enlarged spleen for years but no doctor had been concerned enough about it to do any further testing). She also ordered a big blood test (they drew 7 vials of blood on the 6th.)
Anyway, Dr. R had me scheduled to see a thoracic surgeon and him again on March 13 to see if they were going to approve and schedule me for surgery. When I went in for that appointment I was told that they had decided that it was not lung cancer, that it was probably some light scar tissue from the radiation that I had received. PRAISE THE LORD FOR ANSWERED PRAYER!!!!!!!
I am scheduled to go back for another CT on May 6 and see Dr. R on May 15.
In the meantime Dr. Yuen is trying to figure out the spleen problem and the protein in the blood. She is going to do a bone marrow draw this next week to do some further testing and will get me started back on my chemo shots so I don't loose where we are toward remission while we wait. They cannot get me schedules for the transplant before that so now, we play the waiting game again.
So now you are caught up.
As always I appreciate all your prayers and good thoughts. Don't forget, I do also appreciate hearing from you by phone (918-284-9117) or email at jeanclarkcancer@gmail.com.
Love to all,
Jean
Let's see if I can catch everyone up. I had two appointments scheduled for March 6, the first with a pulmonary oncologist to follow up on the Cyberknife treatment that was done in October to make sure all the cancer was killed, and the other with my hematology oncologist to see whether I had started responding to the multiple myeloma treatment.
I figured I would sail through the pulmonary doctor appointment and possibly be told I was not responding to the myeloma treatment in the second.
Well, my world changed drastically when I saw the pulmonary doctor. His name starts with an R but I don't know how to spell his name so I will refer to him as simply Dr. R. He told me that the cancer in my lung was back and that I needed surgery to remove one lobe of my lung. He scheduled me to see a cardiologist the next day to make sure my heart is strong enough for the surgery.
This was brought about because I have been having some chest pains since I started the chemo and since my father died of a heart attack at age 58 and my sister died of a heart attack at age 51 they wanted to make sure it was not my heart. Two tests later I was told that my heart is fine.
Then I went to Dr. Yuen, the hematology oncologist, in the afternoon. She told me that I am responding to the treatments and that if it weren't for the lung problem and the fact that I have an enlarged spleen and excess protein in my blood that I would be ready to start the process for transplant. Yeah, almost.
She ordered an ultrasound of my liver and spleen (although I told her I have had an enlarged spleen for years but no doctor had been concerned enough about it to do any further testing). She also ordered a big blood test (they drew 7 vials of blood on the 6th.)
Anyway, Dr. R had me scheduled to see a thoracic surgeon and him again on March 13 to see if they were going to approve and schedule me for surgery. When I went in for that appointment I was told that they had decided that it was not lung cancer, that it was probably some light scar tissue from the radiation that I had received. PRAISE THE LORD FOR ANSWERED PRAYER!!!!!!!
I am scheduled to go back for another CT on May 6 and see Dr. R on May 15.
In the meantime Dr. Yuen is trying to figure out the spleen problem and the protein in the blood. She is going to do a bone marrow draw this next week to do some further testing and will get me started back on my chemo shots so I don't loose where we are toward remission while we wait. They cannot get me schedules for the transplant before that so now, we play the waiting game again.
So now you are caught up.
As always I appreciate all your prayers and good thoughts. Don't forget, I do also appreciate hearing from you by phone (918-284-9117) or email at jeanclarkcancer@gmail.com.
Love to all,
Jean
Saturday, February 22, 2014
February 22, 2014
Well, I am a little behind in posting my blog. No, make that a lot behind.
There has been a lot going on the past month and I should have kept everyone informed but I haven't.
Let's see, I guess I need to go back to mid January when they took a lot of blood (5 vials). Then on January 28 they gave me an infusion (through an IV) of a new drug to me of Zometa. Only took about 15 minutes and I didn't think anything about it. They also told me to take calcium every day.
So Keith, loving husband that he is, went to Walmart and got the biggest bottle of chewable calcium pills that he could get. Not only was the bottle big but the pills in there are HUGE!!! Good thing they are chewable or I could never get them down.
Then comes February 6. I went to my main Oncologist who gave me the results of all those blood tests. It seems that I am not responding to my treatments. This is determined by the fact that certain markers in the blood work are worse than they were when we got here to Oklahoma for treatment.
Now, to make matters more complicated (and put a little humor in all this), I turned 65 this month. So I had asked the doctors not to do any big tests (like CT scan, etc) until my Medicare kicked in. I was so proud that I would not have to make big copayments since I now have Medicare and my supplemental Blue Cross/Blue Shield.
Well, I was until I started talking to my BC/BS lady who said "Oh, you are aging into Medicare". That was like a kick in the gut. I didn't think about getting old, only that I would have Medicare. LOL
Then they told me to get a primary care doctor. OK, that should be easy, right. Well, when I called the OU Physicians phone number to get a primary care doctor that would accept new patients with Medicare and BC/BS the "helpful" young lady who answered the phone said, "Oh, you should call the Senior Clinic. They take care of geriatric patients there." Talk about a wake up call! I sure don't consider myself geriatric. I that that term was for "OLD" people. You know, at least 80. Of course, when I turn 80 I will be thinking that 100 is old. Guess it's all relative. OK, that was the comic relief. Now, back to what's going on.
I have been having some shortness of breath when I walk which goes away after a few minutes of sitting (and have been telling the doctor about it). She decided to do an x-ray to make sure I didn't have fluid in my lungs. Well, it showed a spot in the lower left lobe that they want to look at a little closer. Since it has been 3 months since my CyberKnife treatment in Tennessee on my lung tumor it was time for a CT anyway. So they ordered that. I have an appointment March 6 with a pulmonary oncologist to get the results of that report.
The doctor also ordered a complete x-ray of my body to see if there were any indicators of the multiple myeloma spreading. They took a series of almost 30 x-rays from the top of my head to the bottoms of my feet and all the way to the tips of my fingers.
There are some indicators that there might be problems coming up in my forearms. Now, this could present a very BIG problem because if the bones get weak from the myeloma they can break for no apparent reason (no fall needed to produce break). Since I walk on crutches 90% of the time you can see where this could be a little scary.
And in the middle of all this I have gained 20 pounds, just inching up a pound or two every week. Some of this is weight gain but most of it is water. I had lost 40 pounds last year taking my Zeal for Wellness formula and was doing well with keeping it off and even working toward losing more. But they would not let me take it while I was taking the chemo. Well, finally on February 6 the doctor decided that it would not hurt me to take it.
Boy, I couldn't wait to get back on that. I had been retaining so much fluids that I had to have my feet propped up above my heart just to get the swelling down enough to try to work.
Yes, that's right, in the midst of all this other, I am trying to work at H&R Block in Del City. I have to keep busy with my mind and the money always helps. But February is a busy month and I was pulling some long hours. Not complaining but just documenting. But all those hours with my feet down didn't help.
And my brace broke and I fell. Finally got my brace fixed again after about a week but the swelling was so bad I couldn't get my brace on. After about 10 days of that we finally got it under control by sitting with feet elevated all the time that I could and sleeping with my feet and legs elevated every night. Then when I got back on my Zeal I lost 5 pounds in about a week!!! Talk about happy. Now I can wear my brace again without it cutting off the circulation. I still need to lose more weight but will be able to do that now that I am feeling better physically.
A couple more things and then I am finished. Had an MRI on my T-12 vertebra a few days ago. That was to check to make sure the tumor they did radiation on in Tennessee is not growing and that the bone remains stable. No word for sure on it but preliminary results says it's probably holding it's own.
Now, one more test (and this is a big one). They will be scheduling a PET scan probably for this next week. This test is used to show up all the cancer spots in the body. Hopefully they will that that test run and get the results in time for my doctor appointment March 6.
So, March 6 I have two doctor appointments, one with the pulmonary oncologist and one with the hematology oncologist. Also have appointment March 26 with primary care doctor. Hopefully we will get some better reports on March 6 than before. I promise to update this blog a little quicker next time. I have just had a lot to think about and do and just didn't feel like posting all this any sooner. But I feel better now (physically and mentally) and am ready to face whatever challenges are thrown at me.
Thanks for reading. Have a great weekend.
Jean
There has been a lot going on the past month and I should have kept everyone informed but I haven't.
Let's see, I guess I need to go back to mid January when they took a lot of blood (5 vials). Then on January 28 they gave me an infusion (through an IV) of a new drug to me of Zometa. Only took about 15 minutes and I didn't think anything about it. They also told me to take calcium every day.
So Keith, loving husband that he is, went to Walmart and got the biggest bottle of chewable calcium pills that he could get. Not only was the bottle big but the pills in there are HUGE!!! Good thing they are chewable or I could never get them down.
Then comes February 6. I went to my main Oncologist who gave me the results of all those blood tests. It seems that I am not responding to my treatments. This is determined by the fact that certain markers in the blood work are worse than they were when we got here to Oklahoma for treatment.
Now, to make matters more complicated (and put a little humor in all this), I turned 65 this month. So I had asked the doctors not to do any big tests (like CT scan, etc) until my Medicare kicked in. I was so proud that I would not have to make big copayments since I now have Medicare and my supplemental Blue Cross/Blue Shield.
Well, I was until I started talking to my BC/BS lady who said "Oh, you are aging into Medicare". That was like a kick in the gut. I didn't think about getting old, only that I would have Medicare. LOL
Then they told me to get a primary care doctor. OK, that should be easy, right. Well, when I called the OU Physicians phone number to get a primary care doctor that would accept new patients with Medicare and BC/BS the "helpful" young lady who answered the phone said, "Oh, you should call the Senior Clinic. They take care of geriatric patients there." Talk about a wake up call! I sure don't consider myself geriatric. I that that term was for "OLD" people. You know, at least 80. Of course, when I turn 80 I will be thinking that 100 is old. Guess it's all relative. OK, that was the comic relief. Now, back to what's going on.
I have been having some shortness of breath when I walk which goes away after a few minutes of sitting (and have been telling the doctor about it). She decided to do an x-ray to make sure I didn't have fluid in my lungs. Well, it showed a spot in the lower left lobe that they want to look at a little closer. Since it has been 3 months since my CyberKnife treatment in Tennessee on my lung tumor it was time for a CT anyway. So they ordered that. I have an appointment March 6 with a pulmonary oncologist to get the results of that report.
The doctor also ordered a complete x-ray of my body to see if there were any indicators of the multiple myeloma spreading. They took a series of almost 30 x-rays from the top of my head to the bottoms of my feet and all the way to the tips of my fingers.
There are some indicators that there might be problems coming up in my forearms. Now, this could present a very BIG problem because if the bones get weak from the myeloma they can break for no apparent reason (no fall needed to produce break). Since I walk on crutches 90% of the time you can see where this could be a little scary.
And in the middle of all this I have gained 20 pounds, just inching up a pound or two every week. Some of this is weight gain but most of it is water. I had lost 40 pounds last year taking my Zeal for Wellness formula and was doing well with keeping it off and even working toward losing more. But they would not let me take it while I was taking the chemo. Well, finally on February 6 the doctor decided that it would not hurt me to take it.
Boy, I couldn't wait to get back on that. I had been retaining so much fluids that I had to have my feet propped up above my heart just to get the swelling down enough to try to work.
Yes, that's right, in the midst of all this other, I am trying to work at H&R Block in Del City. I have to keep busy with my mind and the money always helps. But February is a busy month and I was pulling some long hours. Not complaining but just documenting. But all those hours with my feet down didn't help.
And my brace broke and I fell. Finally got my brace fixed again after about a week but the swelling was so bad I couldn't get my brace on. After about 10 days of that we finally got it under control by sitting with feet elevated all the time that I could and sleeping with my feet and legs elevated every night. Then when I got back on my Zeal I lost 5 pounds in about a week!!! Talk about happy. Now I can wear my brace again without it cutting off the circulation. I still need to lose more weight but will be able to do that now that I am feeling better physically.
A couple more things and then I am finished. Had an MRI on my T-12 vertebra a few days ago. That was to check to make sure the tumor they did radiation on in Tennessee is not growing and that the bone remains stable. No word for sure on it but preliminary results says it's probably holding it's own.
Now, one more test (and this is a big one). They will be scheduling a PET scan probably for this next week. This test is used to show up all the cancer spots in the body. Hopefully they will that that test run and get the results in time for my doctor appointment March 6.
So, March 6 I have two doctor appointments, one with the pulmonary oncologist and one with the hematology oncologist. Also have appointment March 26 with primary care doctor. Hopefully we will get some better reports on March 6 than before. I promise to update this blog a little quicker next time. I have just had a lot to think about and do and just didn't feel like posting all this any sooner. But I feel better now (physically and mentally) and am ready to face whatever challenges are thrown at me.
Thanks for reading. Have a great weekend.
Jean
Wednesday, January 15, 2014
Update Jan 15 2014
Well, it was just before Christmas that I made my last post. Sorry to be so lax at this but we have had unpredictable internet and I have had some computer problems. Probably not good excuses but they are true.
Anyway, I am proceeding on schedule with my Valcade shots that I receive at the Stephenson Cancer Center at OU Medical and massive doses of steroids that I take at home.
I get a shot in the stomach or in my arm on the First and Fourth days of a 21 day cycle (Monday and Thursday), take steroids all four of those days (Monday thru Thursday), then don't do any treatment until the 8th through the 11th day when I repeat the first week course (2 shots in the week and four days of steroids). Then I get to rest from all meds for a week and then start it all over again.
No side effects that I can tell from the Valcade shots themselves other that a bruise at the injection site that is about 2 inches in diameter. It turns bright red and is occasionally warm to the touch but not tender or sore. No nausea or vomiting. No itching of the skin. I have medication prescribed for each of these side effects but since I don't have any side effects I choose not to take the extra medicine. I figure I have enough sensitivity to any type of drugs that it is better not to take something that I don't have to.
But those steroids are something else. They give me all kinds of side effects. I am taking 40 mg of steroids for four days in a row. I have spoken with my doctor and she explained that the steroids are as big a part of the treatment for multiple myeloma as the Valcade. She said it has proven effective in most cases. She also said that all the side effects that I told her about (and have listed below) are "normal" so I am doing my best and have learned to live with them.
1. My eyes - I feel like I am looking through water all the time. I have to really concentrate to look any farther than my laptop screen. It makes it very tiring to try to read, watch TV, or anything else and so I tend to play a lot of games on my computer just so I don't have to really see. This starts up the day that I start the steroids at the first of a cycle and continues until a few days after I take the second week of steroids. By the time the "free" week is over I can see just fine but then it's time to start them again.
2. Platelet count is low - This affects the clotting of my blood. Basically this means that I bruise very, very easily. That's probably why I have the large bruises from the Velcade injections. If you even look at me I get a bruise. Well, maybe not quite that bad but you get the idea. The good thing is that during my "free" week the count comes back up so I feel a lot better. This round of steroids I developed what I thought was a rash on my ankle. They said it was petechial hemorrhage which sounds bad but is just small broken capillary veins that bleed a little and cause a rash like look. It is only on my left ankle.
3. I tire easily - I have started working at H&R Block now doing income tax returns. I am working 3 days a week and will soon go to 4 days. Right now I am not working on days when I have my chemo shot but that will change as the work picks up. Then I will work 5 days a week. I find myself sleeping a lot on weekends simply to recharge. And I have been sleeping very well without medication at night.
4. Sores don't heal as quickly - I got a simple paper cut on my finger which bled a lot. It's almost well but has taken quite a while to heal. I also got a rash that got infected because I couldn't fight it off. I am now on Kaflex antibiotics and have a cream for the rash. It is starting to get better. Side effect of Kaflex is that I don't sleep well after I have been on it a few days. Thus I am up doing my blog at 4:00 am. Oh well, I will take a short nap before I go to work (if I have time).
5. Weight gain and loss - With the steroids I find that I need to eat protein in pretty large doses to control the symptoms in my eyes. It gets worse the longer I go without protein. They weigh me every day that I get a shot and I go up and down. Just bought new slacks in a 16 (and was very proud of that) but then started the steroids again and now they are pretty tight. Oh, well, next week is an free week and I will drop the extra pounds. I find that if I eat protein every few hours it controls a lot of side effects.
6. Irritability - If I go too long without the protein I catch myself getting very short with Keith and sometimes other people. Of course, since I am with him the most he catches the brunt of it. So we turn to protein. If I tell him I need food he has learned to provide it quickly. He is no dummy! And I don't want to take any of my illness out on him. He is so good to me.
So, you as you can see I have a few side effects but they will get better when I can get off the steroids. The next two cycles (3 and 4) I only have to take the steroids for one week of each of the three weeks. I think that will take care of a lot of problems. I finish that all up in early March.
Dr. Yuen has said that my transplant will not take place until after April 15 (last day of tax season). I expect they will want to let my body get over all the chemo and steroids for a while before they do the transplant. I am ready to get it done. I know I will probably be very ill for a while but then I will get so much stronger and in remission. Then I can get on with my life as a cancer survivor.
Next doctor appointment is February 6. I probably won't blog before unless there is something drastic to report. Hopefully I will know a little more then. That will be the end of the second full cycle of chemo and steroids. I will have blood work drawn during the free week and the doctor will be able to look at that and see where we are.
Until then, stay healthy and happy in this new year.
Love to all,
Jean
(please continue to keep us in your prayers)
Anyway, I am proceeding on schedule with my Valcade shots that I receive at the Stephenson Cancer Center at OU Medical and massive doses of steroids that I take at home.
I get a shot in the stomach or in my arm on the First and Fourth days of a 21 day cycle (Monday and Thursday), take steroids all four of those days (Monday thru Thursday), then don't do any treatment until the 8th through the 11th day when I repeat the first week course (2 shots in the week and four days of steroids). Then I get to rest from all meds for a week and then start it all over again.
No side effects that I can tell from the Valcade shots themselves other that a bruise at the injection site that is about 2 inches in diameter. It turns bright red and is occasionally warm to the touch but not tender or sore. No nausea or vomiting. No itching of the skin. I have medication prescribed for each of these side effects but since I don't have any side effects I choose not to take the extra medicine. I figure I have enough sensitivity to any type of drugs that it is better not to take something that I don't have to.
But those steroids are something else. They give me all kinds of side effects. I am taking 40 mg of steroids for four days in a row. I have spoken with my doctor and she explained that the steroids are as big a part of the treatment for multiple myeloma as the Valcade. She said it has proven effective in most cases. She also said that all the side effects that I told her about (and have listed below) are "normal" so I am doing my best and have learned to live with them.
1. My eyes - I feel like I am looking through water all the time. I have to really concentrate to look any farther than my laptop screen. It makes it very tiring to try to read, watch TV, or anything else and so I tend to play a lot of games on my computer just so I don't have to really see. This starts up the day that I start the steroids at the first of a cycle and continues until a few days after I take the second week of steroids. By the time the "free" week is over I can see just fine but then it's time to start them again.
2. Platelet count is low - This affects the clotting of my blood. Basically this means that I bruise very, very easily. That's probably why I have the large bruises from the Velcade injections. If you even look at me I get a bruise. Well, maybe not quite that bad but you get the idea. The good thing is that during my "free" week the count comes back up so I feel a lot better. This round of steroids I developed what I thought was a rash on my ankle. They said it was petechial hemorrhage which sounds bad but is just small broken capillary veins that bleed a little and cause a rash like look. It is only on my left ankle.
3. I tire easily - I have started working at H&R Block now doing income tax returns. I am working 3 days a week and will soon go to 4 days. Right now I am not working on days when I have my chemo shot but that will change as the work picks up. Then I will work 5 days a week. I find myself sleeping a lot on weekends simply to recharge. And I have been sleeping very well without medication at night.
4. Sores don't heal as quickly - I got a simple paper cut on my finger which bled a lot. It's almost well but has taken quite a while to heal. I also got a rash that got infected because I couldn't fight it off. I am now on Kaflex antibiotics and have a cream for the rash. It is starting to get better. Side effect of Kaflex is that I don't sleep well after I have been on it a few days. Thus I am up doing my blog at 4:00 am. Oh well, I will take a short nap before I go to work (if I have time).
5. Weight gain and loss - With the steroids I find that I need to eat protein in pretty large doses to control the symptoms in my eyes. It gets worse the longer I go without protein. They weigh me every day that I get a shot and I go up and down. Just bought new slacks in a 16 (and was very proud of that) but then started the steroids again and now they are pretty tight. Oh, well, next week is an free week and I will drop the extra pounds. I find that if I eat protein every few hours it controls a lot of side effects.
6. Irritability - If I go too long without the protein I catch myself getting very short with Keith and sometimes other people. Of course, since I am with him the most he catches the brunt of it. So we turn to protein. If I tell him I need food he has learned to provide it quickly. He is no dummy! And I don't want to take any of my illness out on him. He is so good to me.
So, you as you can see I have a few side effects but they will get better when I can get off the steroids. The next two cycles (3 and 4) I only have to take the steroids for one week of each of the three weeks. I think that will take care of a lot of problems. I finish that all up in early March.
Dr. Yuen has said that my transplant will not take place until after April 15 (last day of tax season). I expect they will want to let my body get over all the chemo and steroids for a while before they do the transplant. I am ready to get it done. I know I will probably be very ill for a while but then I will get so much stronger and in remission. Then I can get on with my life as a cancer survivor.
Next doctor appointment is February 6. I probably won't blog before unless there is something drastic to report. Hopefully I will know a little more then. That will be the end of the second full cycle of chemo and steroids. I will have blood work drawn during the free week and the doctor will be able to look at that and see where we are.
Until then, stay healthy and happy in this new year.
Love to all,
Jean
(please continue to keep us in your prayers)
Tuesday, December 24, 2013
December 24, 2013
Merry Christmas everyone.
As I was laying in bed last night I couldn't help but think about the Bible verse that says something in effect to "in all things, give Thanks (Praise)". I just couldn't stop thinking about that have to share.
This blog will not be my typical "cancer" blog but please bear with me.
I was laying there and wondering how in the world I could give thanks for this year. It has been pretty rough personally the past 7 months.
May 19, 2013 - A tornado hit Little Axe, OK and damaged my granddaughter's house (not bad but that was the start).
May 20, 2013 - A large tornado hit Moore, OK and practically destroyed it. I didn't know anyone personally but it is near where my kids and grandkids live.
May 20, 2013 - My beloved aunt, Shirley Rush, made her final trip home, very unexpectedly. What a terrible call to receive but also what a wonderful homegoing it had to be for her. Reunited with the Lord and all her loved ones, especially the love of her life, O C Rush who had gone before her a couple of years before.
May 25, 2013 - We arrived in Oklahoma for my aunt's memorial and received the phone call that no one wants to receive. My mother, Anna Majors, had made that same trip home. Talk about a double whammy. I fully believe that she just could not face life without her baby sister who had left her just 5 days before. Of course, I am sure they had just a wonderful reunion in heaven. And I am sure my 23 year old special needs granddaughter, Katie Horn, who had gone on 3 years ago was standing there in her healthy heavenly body waving her arms over her head and yelling, "Hi Gommie. Come on it. It is wonderful here".
All in all a few tough days. After laying these two wonderful women to rest beside their spouses we made the long trip back to Tennessee.
I thought this was the worst time of my life. How could I praise the Lord in this? Well, neither of them suffered. My aunt was out with friends and excused herself to the powder room. She did not come back. No time for her to linger and suffer. That was certainly a praise.
When I received the call about Mom, what could I say. I had just talked to her a couple of days before and she sounded so strong and in control even after losing her baby sister. Only 2 days later she was gone and did not suffer. That's a praise.
Either of these ladies could have lingered and suffered for days, weeks or even years. What a wonderful way to go home.
Because I have had some physical problems with my collar bone for almost 2 years I had a flair up with it on the emergency trip home. I did not have my motor home that we live in that is pretty perfect for me (high toilet and a high bed so very handicapped accessible for me, even have a 6x6 deck to make it easier to get in and out). Since trip was unexpected we were not able to secure handicapped motel accommodations on the trip. We stayed with family 2 nights but they are not set up for my special needs either. So by the time I got back I was having a big flair up of the worse kind.
I went to physical therapy and my doctor. They said since I had swollen lymph nodes that I needed to see a colon doctor. After a colonoscopy that came back clear, nothing else was said about it so that's a big Praise.
But my physical therapist, Heather, was not satisfied. She felt that I needed to see a specialist about the collar bone since it kept happening. She found me a doctor, Dr. Edwin Spencer, Jr., in Knoxville and I was able to get in within the month. That's a praise.
August 16, 2013 - Dr. Spencer diagnosed me with cancer! What a dock in the teeth! How can you praise the Lord with a diagnosis like that. My first thought was that I was thankful that my mother was not here to have to hear that diagnosis. Praise the Lord. Of course, my next thought was "I want my mommy". But the prevailing thought was that I was glad she did not have to go through with me. She had cancer years ago and so did her sister. They had suffered enough with going through it personally and had survived it for years.
My doctor made me an appointment with an oncologist for 3 weeks. I just couldn't wait that long. I would have been a basket case. So I got on the computer and found my own doctor who got me in for my first visit in 4 days. PRAISE THE LORD.
After intensive tests, biopisies and CT scans, Dr. David Aljadir, at University of Tennessee, found I had not only one kind of cancer, but two. Where's the praise in that? Well, the biggest involvement of cancer is bone cancer called multiple myeloma. But the surprise is that I also have lung cancer! Where's the praise?
Well, the praise is that the lung cancer was caught very, very early and only because of the collarbone problem. For those who have followed my blog you know that things have moved along quite quickly. I have had treatment on the lung cancer and they think that it should be completely gone when I have my next CT scan on it in early February. PRAISE THE LORD FOR THAT!!!
We came come to Oklahoma for treatment of the multiple myeloma. This is where our family is. PRAISE THE LORD that I am blessed with wonderful family and that most of them are here in the Oklahoma City area. Lots of support at a time when we needed it.
A beautiful daughter, Tammy Horn, and her family including her husband Mark, and a grown son, Mitch Horn, and his family, Stacy, Jordan, Trentyn and Ashlyn. Daughter, Grandchildren and greatgrandchildren wonderful. PRAISE THE LORD
A handsome son, Paul Clark, and his wife Amy. A grown daughter, Mallory Clark, and her family Colby Cox, and children Jordyn and Karman. Also a grown son, River, and an almost grown daughter Cassidy (a senior in high school this year). My daughter-in-law Amy is so supportive since son Paul works away from home. That's wonderful to have such support. ANOTHER PRAISE!
Another son, Conley Clark, and his sweetheart April are only about an hour away. I am so blessed. ANOTHER PRAISE.
Finally, we have one more son and his family only about 3 hours away. Robert Clark, our youngest), his wife Julie and their three sons. One son is grown, Josh Slater and lives about 2 hours from here. The two youngest boys are still in school, Glen Clark, is 13 and Tyler Clark is 11. Another wonderful, supportive family even though they cannot always get away at the time they would like due to his work. PRAISE THE LORD Again.
Three wonderful sons and a beautiful daughter.
Also have brother, Gary Majors, and his wife Colleen, and their 3 grown children, Carrie Jones and husband Dave, and her son Zach; Rebecca and her daughter _____ and son Gary, Jr. and his sons Christian and and sister, Stacy Turner, and her husband Ken and her children Chelsie, Canon, Caydon and Katelyn all here close (within about 2 or 3 hours). Well, Chelsie and her family have moved to Colorado for his work. They have three beautiful children. But the rest are all within 2 or 3 hours of here. Another Praise.
I also have a brother, Steve Majors, who lives in Ecuador. A long way away but Skype makes his so close. We are collaborating on a project of his so I talk with him almost every day. That is more often than I did when he was in Nevada. Another PRAISE.
OK. So you see, I have much to be giving the Lord praise about. Now for the update on this crazy disease.
I have now had 3 chemo treatments and no side effects. My chemo is given in a shot, a simple injection into my arm or stomach. A cycle is 21 days. I receive 4 injections in two weeks, 4 days apart. Then one week off with no treatments. I take 40mg of steroids on days 1 thru 4 and days 8 thru 12. That's it. Cycle 1 will be complete when I see the doctor on January 2. We will see how the cancer is responding to the treatment then. Absolutely no side effects. PRAISE the LORD.
I have been told to take Meletonin for sleep (prescribed by the doctor). That was not the thing to do. I have been out of it for three days and I only took the medicine 2 nights. I was fuzzy headed, blurry eyed and had stopped up ears. Totally not good. But I have that medicine out of my system now and I feel great. PRAISE THE LORD.
To each of you who have read my blog for the past few months I wish you all a very Merry Christmas and a very prosperous new year. We are spending Christmas Day with our daughter and the following day with our son Paul. Don't know if we will see the other two because of their other family obligations.
PRAISE THE LORD for all he has done for us this year. It draws me closer to Him daily.
HAPPY BIRTHDAY, Jesus. Thank you for coming to earth as a baby to live among us as a man. But most of all, thank you for dying for my sins. Although I do not feel worthy, I am so glad that you consider me worth.
Jean
As I was laying in bed last night I couldn't help but think about the Bible verse that says something in effect to "in all things, give Thanks (Praise)". I just couldn't stop thinking about that have to share.
This blog will not be my typical "cancer" blog but please bear with me.
I was laying there and wondering how in the world I could give thanks for this year. It has been pretty rough personally the past 7 months.
May 19, 2013 - A tornado hit Little Axe, OK and damaged my granddaughter's house (not bad but that was the start).
May 20, 2013 - A large tornado hit Moore, OK and practically destroyed it. I didn't know anyone personally but it is near where my kids and grandkids live.
May 20, 2013 - My beloved aunt, Shirley Rush, made her final trip home, very unexpectedly. What a terrible call to receive but also what a wonderful homegoing it had to be for her. Reunited with the Lord and all her loved ones, especially the love of her life, O C Rush who had gone before her a couple of years before.
May 25, 2013 - We arrived in Oklahoma for my aunt's memorial and received the phone call that no one wants to receive. My mother, Anna Majors, had made that same trip home. Talk about a double whammy. I fully believe that she just could not face life without her baby sister who had left her just 5 days before. Of course, I am sure they had just a wonderful reunion in heaven. And I am sure my 23 year old special needs granddaughter, Katie Horn, who had gone on 3 years ago was standing there in her healthy heavenly body waving her arms over her head and yelling, "Hi Gommie. Come on it. It is wonderful here".
All in all a few tough days. After laying these two wonderful women to rest beside their spouses we made the long trip back to Tennessee.
I thought this was the worst time of my life. How could I praise the Lord in this? Well, neither of them suffered. My aunt was out with friends and excused herself to the powder room. She did not come back. No time for her to linger and suffer. That was certainly a praise.
When I received the call about Mom, what could I say. I had just talked to her a couple of days before and she sounded so strong and in control even after losing her baby sister. Only 2 days later she was gone and did not suffer. That's a praise.
Either of these ladies could have lingered and suffered for days, weeks or even years. What a wonderful way to go home.
Because I have had some physical problems with my collar bone for almost 2 years I had a flair up with it on the emergency trip home. I did not have my motor home that we live in that is pretty perfect for me (high toilet and a high bed so very handicapped accessible for me, even have a 6x6 deck to make it easier to get in and out). Since trip was unexpected we were not able to secure handicapped motel accommodations on the trip. We stayed with family 2 nights but they are not set up for my special needs either. So by the time I got back I was having a big flair up of the worse kind.
I went to physical therapy and my doctor. They said since I had swollen lymph nodes that I needed to see a colon doctor. After a colonoscopy that came back clear, nothing else was said about it so that's a big Praise.
But my physical therapist, Heather, was not satisfied. She felt that I needed to see a specialist about the collar bone since it kept happening. She found me a doctor, Dr. Edwin Spencer, Jr., in Knoxville and I was able to get in within the month. That's a praise.
August 16, 2013 - Dr. Spencer diagnosed me with cancer! What a dock in the teeth! How can you praise the Lord with a diagnosis like that. My first thought was that I was thankful that my mother was not here to have to hear that diagnosis. Praise the Lord. Of course, my next thought was "I want my mommy". But the prevailing thought was that I was glad she did not have to go through with me. She had cancer years ago and so did her sister. They had suffered enough with going through it personally and had survived it for years.
My doctor made me an appointment with an oncologist for 3 weeks. I just couldn't wait that long. I would have been a basket case. So I got on the computer and found my own doctor who got me in for my first visit in 4 days. PRAISE THE LORD.
After intensive tests, biopisies and CT scans, Dr. David Aljadir, at University of Tennessee, found I had not only one kind of cancer, but two. Where's the praise in that? Well, the biggest involvement of cancer is bone cancer called multiple myeloma. But the surprise is that I also have lung cancer! Where's the praise?
Well, the praise is that the lung cancer was caught very, very early and only because of the collarbone problem. For those who have followed my blog you know that things have moved along quite quickly. I have had treatment on the lung cancer and they think that it should be completely gone when I have my next CT scan on it in early February. PRAISE THE LORD FOR THAT!!!
We came come to Oklahoma for treatment of the multiple myeloma. This is where our family is. PRAISE THE LORD that I am blessed with wonderful family and that most of them are here in the Oklahoma City area. Lots of support at a time when we needed it.
A beautiful daughter, Tammy Horn, and her family including her husband Mark, and a grown son, Mitch Horn, and his family, Stacy, Jordan, Trentyn and Ashlyn. Daughter, Grandchildren and greatgrandchildren wonderful. PRAISE THE LORD
A handsome son, Paul Clark, and his wife Amy. A grown daughter, Mallory Clark, and her family Colby Cox, and children Jordyn and Karman. Also a grown son, River, and an almost grown daughter Cassidy (a senior in high school this year). My daughter-in-law Amy is so supportive since son Paul works away from home. That's wonderful to have such support. ANOTHER PRAISE!
Another son, Conley Clark, and his sweetheart April are only about an hour away. I am so blessed. ANOTHER PRAISE.
Finally, we have one more son and his family only about 3 hours away. Robert Clark, our youngest), his wife Julie and their three sons. One son is grown, Josh Slater and lives about 2 hours from here. The two youngest boys are still in school, Glen Clark, is 13 and Tyler Clark is 11. Another wonderful, supportive family even though they cannot always get away at the time they would like due to his work. PRAISE THE LORD Again.
Three wonderful sons and a beautiful daughter.
Also have brother, Gary Majors, and his wife Colleen, and their 3 grown children, Carrie Jones and husband Dave, and her son Zach; Rebecca and her daughter _____ and son Gary, Jr. and his sons Christian and and sister, Stacy Turner, and her husband Ken and her children Chelsie, Canon, Caydon and Katelyn all here close (within about 2 or 3 hours). Well, Chelsie and her family have moved to Colorado for his work. They have three beautiful children. But the rest are all within 2 or 3 hours of here. Another Praise.
I also have a brother, Steve Majors, who lives in Ecuador. A long way away but Skype makes his so close. We are collaborating on a project of his so I talk with him almost every day. That is more often than I did when he was in Nevada. Another PRAISE.
OK. So you see, I have much to be giving the Lord praise about. Now for the update on this crazy disease.
I have now had 3 chemo treatments and no side effects. My chemo is given in a shot, a simple injection into my arm or stomach. A cycle is 21 days. I receive 4 injections in two weeks, 4 days apart. Then one week off with no treatments. I take 40mg of steroids on days 1 thru 4 and days 8 thru 12. That's it. Cycle 1 will be complete when I see the doctor on January 2. We will see how the cancer is responding to the treatment then. Absolutely no side effects. PRAISE the LORD.
I have been told to take Meletonin for sleep (prescribed by the doctor). That was not the thing to do. I have been out of it for three days and I only took the medicine 2 nights. I was fuzzy headed, blurry eyed and had stopped up ears. Totally not good. But I have that medicine out of my system now and I feel great. PRAISE THE LORD.
To each of you who have read my blog for the past few months I wish you all a very Merry Christmas and a very prosperous new year. We are spending Christmas Day with our daughter and the following day with our son Paul. Don't know if we will see the other two because of their other family obligations.
PRAISE THE LORD for all he has done for us this year. It draws me closer to Him daily.
HAPPY BIRTHDAY, Jesus. Thank you for coming to earth as a baby to live among us as a man. But most of all, thank you for dying for my sins. Although I do not feel worthy, I am so glad that you consider me worth.
Jean
Tuesday, December 17, 2013
Finally new information
Hello everyone!
I know it has been a long time since I wrote anything but there has been nothing to report. But there is now, finally.
After fighting for weeks with the insurance I finally have coverage and my treatment could proceed. Although I was supposed to have coverage starting Nov 1 the insurance (Blue Cross/Blue Shield) did not get me in their system until Dec 1. (But they got their premium, but that's a different story). Big push for me was my doctor was leaving Dec 4 until Dec 26 (out of the country). She needed to write orders but didn't want to do it until insurance approved treatment or I would have to pay all of it.
So, finally, yesterday I had my first chemo treatment. I was told I would see a pharmacist, learn about chemo and it's side effects and get my first shot. I guess I was naïve but I expected to be in a room, like an exam room. Instead they took me into the chemo area. For those of you who have never been there (and I had not) let me explain. At Stephenson Cancer Center at University of Oklahoma Health Sciences complex it is a very, very large area. It is then divided into sections with 8 places for patients, complete with nice recliners and an IV pole for everyone. You can have one visitor with you. A nurse is assigned to you for the day and she also has other patients.
When we walked in there were 2 other patients. One lady appeared to be pretty ill. We did not visit with her. The other lady was a younger woman. I just started crying. Could not hold back the tears. It really hit me. I have cancer. Yes, I have been blogging for months about this and I thought that I had really gotten a hold on it and my emotions. But there is something about walking into the Chemo room that really got to me. It took almost 30 minutes for me to get it together. But then I was OK and started visiting with the younger woman, who was near me.
She is 44 year mother of a 3 year old. She has cancer that has spread to her liver and has already had surgery but still has tumors. She will have chemo for the rest of her life. Then a 35 year old mother of two, ages 3 years and 6 months, has brain cancer. They are both very upbeat and it was encouraging to me.
Just before I left a man probably in his 60's spoke up and told me he was getting the same chemo medicine for the same type of cancer that I have. He is on his 3rd cycle and said he has had no side effects. That was also encouraging.
I was feeling a little dizzy when I left and a little light headed but thought it was because I had not eaten lunch. We went to Golden Corral to eat. By the time we got home I had a touch of a headache which got worse as the night progressed. I went to bed about 9 and watched some TV propped up on two pillows.
I took one benedryl and one over the counter Iubeprophen to help me sleep. When I got ready to go to sleep and took the extra pillow out I got so dizzy. Couldn't close my eyes because my head was spinning. Couldn't keep my eyes open because the room was spinning. I was also very hot. Had Keith get me a cold washcloth and put it on top of my head. Guess that was the 'flushing' side effect. I put the extra pillow back and finally got to sleep. Then woke up when Keith came to bed and moved down to the other pillow in small steps. I was able to go to sleep and no dizziness. Got up about 4 this morning feeling fine.
I am sure I will have to take a nap sometime today.
I have increased uric acid levels so they put me on Allopurinol. I took one last night when we got home and another this morning. I have to go have another blood test about noon. If the levels are dropping then I just have to finish taking them for 10 days. Otherwise they will give me an IV dose this afternoon after they get my blood results.
Thursday I have an appointment with a Neurologist. This is to evaluate the pain that I have as a result from post polio and the bulging disks in my low back, neither of which is related to the cancer but they don't want to not address the pain. Maybe he can give me something for the arthritis because I know what that is.
Thursday afternoon, after that appointment, I have chemo again. Chemo again on Dec 23 and Dec 26. Then I have no chemo the following week.
A cycle of this chemo is 21 days. Day 1 and day 4 I have chemo, day 9 and 12 I have chemo. Then no chemo for the rest of that 21 days. Then the next cycle starts.
My next appointment with my doctor has been moved to January 2. Every time I get chemo or see a doctor they will draw blood. Guess I have to get over my hatred of needles, huh. If I was getting my chemo through an IV I would have a port and they would draw blood from there. However, I just get a shot. But I am good with that.
At some point I will get a port just before I have my bone marrow transplant. My granddaughter, Cassidy, graduates in May and we are hoping to have me able to go to the graduation. I have to talk with my doctor about this when I see her in January. Maybe I can get back to work before a full year.
I have been hired at H&R Block for the tax season here in Midwest City. It is only 3 miles from home and they will work with me on my schedule to accommodate doctor visits and chemo. Of course, if they schedule the transplant before April 15 I will have to quit but I have told the manager about it and they are understanding about it.
We had Thanksgiving 3 days in a row. First was with our son, Paul's, family. Full dinner. Daughter in law is good cook and her mother and brother were there. Friday we were at daughter Tammy's. Again full dinner and as usual it was delicious. She is also a good cook. Saturday we had all our kids at Tammy's house. We had soup and pizza. It was really nice. All of the kids were there except our son Robert who lives in Texas and was unable to attend. We took lots of pictures and did a lot of visiting.
That's about it. More later. I have to eat breakfast so I can take my 10 steroid pills. Always something.
Jean
I know it has been a long time since I wrote anything but there has been nothing to report. But there is now, finally.
After fighting for weeks with the insurance I finally have coverage and my treatment could proceed. Although I was supposed to have coverage starting Nov 1 the insurance (Blue Cross/Blue Shield) did not get me in their system until Dec 1. (But they got their premium, but that's a different story). Big push for me was my doctor was leaving Dec 4 until Dec 26 (out of the country). She needed to write orders but didn't want to do it until insurance approved treatment or I would have to pay all of it.
So, finally, yesterday I had my first chemo treatment. I was told I would see a pharmacist, learn about chemo and it's side effects and get my first shot. I guess I was naïve but I expected to be in a room, like an exam room. Instead they took me into the chemo area. For those of you who have never been there (and I had not) let me explain. At Stephenson Cancer Center at University of Oklahoma Health Sciences complex it is a very, very large area. It is then divided into sections with 8 places for patients, complete with nice recliners and an IV pole for everyone. You can have one visitor with you. A nurse is assigned to you for the day and she also has other patients.
When we walked in there were 2 other patients. One lady appeared to be pretty ill. We did not visit with her. The other lady was a younger woman. I just started crying. Could not hold back the tears. It really hit me. I have cancer. Yes, I have been blogging for months about this and I thought that I had really gotten a hold on it and my emotions. But there is something about walking into the Chemo room that really got to me. It took almost 30 minutes for me to get it together. But then I was OK and started visiting with the younger woman, who was near me.
She is 44 year mother of a 3 year old. She has cancer that has spread to her liver and has already had surgery but still has tumors. She will have chemo for the rest of her life. Then a 35 year old mother of two, ages 3 years and 6 months, has brain cancer. They are both very upbeat and it was encouraging to me.
Just before I left a man probably in his 60's spoke up and told me he was getting the same chemo medicine for the same type of cancer that I have. He is on his 3rd cycle and said he has had no side effects. That was also encouraging.
I was feeling a little dizzy when I left and a little light headed but thought it was because I had not eaten lunch. We went to Golden Corral to eat. By the time we got home I had a touch of a headache which got worse as the night progressed. I went to bed about 9 and watched some TV propped up on two pillows.
I took one benedryl and one over the counter Iubeprophen to help me sleep. When I got ready to go to sleep and took the extra pillow out I got so dizzy. Couldn't close my eyes because my head was spinning. Couldn't keep my eyes open because the room was spinning. I was also very hot. Had Keith get me a cold washcloth and put it on top of my head. Guess that was the 'flushing' side effect. I put the extra pillow back and finally got to sleep. Then woke up when Keith came to bed and moved down to the other pillow in small steps. I was able to go to sleep and no dizziness. Got up about 4 this morning feeling fine.
I am sure I will have to take a nap sometime today.
I have increased uric acid levels so they put me on Allopurinol. I took one last night when we got home and another this morning. I have to go have another blood test about noon. If the levels are dropping then I just have to finish taking them for 10 days. Otherwise they will give me an IV dose this afternoon after they get my blood results.
Thursday I have an appointment with a Neurologist. This is to evaluate the pain that I have as a result from post polio and the bulging disks in my low back, neither of which is related to the cancer but they don't want to not address the pain. Maybe he can give me something for the arthritis because I know what that is.
Thursday afternoon, after that appointment, I have chemo again. Chemo again on Dec 23 and Dec 26. Then I have no chemo the following week.
A cycle of this chemo is 21 days. Day 1 and day 4 I have chemo, day 9 and 12 I have chemo. Then no chemo for the rest of that 21 days. Then the next cycle starts.
My next appointment with my doctor has been moved to January 2. Every time I get chemo or see a doctor they will draw blood. Guess I have to get over my hatred of needles, huh. If I was getting my chemo through an IV I would have a port and they would draw blood from there. However, I just get a shot. But I am good with that.
At some point I will get a port just before I have my bone marrow transplant. My granddaughter, Cassidy, graduates in May and we are hoping to have me able to go to the graduation. I have to talk with my doctor about this when I see her in January. Maybe I can get back to work before a full year.
I have been hired at H&R Block for the tax season here in Midwest City. It is only 3 miles from home and they will work with me on my schedule to accommodate doctor visits and chemo. Of course, if they schedule the transplant before April 15 I will have to quit but I have told the manager about it and they are understanding about it.
We had Thanksgiving 3 days in a row. First was with our son, Paul's, family. Full dinner. Daughter in law is good cook and her mother and brother were there. Friday we were at daughter Tammy's. Again full dinner and as usual it was delicious. She is also a good cook. Saturday we had all our kids at Tammy's house. We had soup and pizza. It was really nice. All of the kids were there except our son Robert who lives in Texas and was unable to attend. We took lots of pictures and did a lot of visiting.
That's about it. More later. I have to eat breakfast so I can take my 10 steroid pills. Always something.
Jean
Wednesday, November 20, 2013
1st Visit with Dr. Yuen in Oklahoma
Wow, yesterday was rough!
I was looking forward to meeting my new doctor and getting things going so I could get my bone marrow transplant and be "cured" of cancer.
At least that is the way I understood it from the doctor in TN. He said (or at least I heard) that with the bone marrow transplant I would be cured of the multiple myeloma and not have to worry about it coming back.
Well, guess what? THERE IS NO CURE!!!
Yes, that's the way I felt too. I felt like I had been slapped in the face, punched in the gut and slammed to the floor!!!!!
OK. Now that bit of information is out of the way I can tell you that I really loved the Stephenson Cancer Center at the Oklahoma University Health Sciences Complex in Oklahoma City.
When we arrived the valet was extremely friendly. We told him it was our first visit and he pointed the way to just inside the front door to the receptionist. She told us exactly how to get where we needed to be. But there is a wonderful cafeteria right there on the first floor which smelled really good. We didn't go over to look but were pleased to know that hot food is available.
I went to the Hemetology Oncology section of this building. Everyone that I was in contact with is a member of the Transplant Team. Really was not expecting to be immersed into all that on the first visit but I guess it is really good (but a little intense, too, since I had only been told I was going to be evaluated for the possibility). But after doing the first time patient paperwork I met Rick Cunningham, a social worker for the transplant team.
He is the one that delivered the No Cure statement. He let us know very early on in our conversation that "This is not a cure. It is to put the multiple myeloma into remission. There is no cure." Very straight forward but I guess that way I cannot say that I still thought there was a cure. So no misunderstanding him (and even later the doctor) and undue expectations about what will happen.
He explained to be about treatment, suggested a place to stay in the RV that is a little closer to the hospital (but I don't think we will move unless it is a lot cheaper), and basically visited with us about how important it is that I have a good caregiver. When I go into isolation Keith can come in and out as long as he is not ill but I will not be able to have visitors "with diapers" so the little ones can't come.
Rick talked with us about how we each felt about the transplant and recovery time needed. After explaining to him that I hope to return to work as soon as possible we found out that I will need to be here in OKC for about a year!! Really don't know how we will be able to do that financially BUT I will trust the Lord to provide. (Just wish I knew how, though! LOL)
Then I received a book that outlines the transplant procedure completely, from telling what each person we meet will do by their title. I was given a little time to look through that and then the doctor came in.
Dr. Carrie Yuen is a petite Asian woman (about 4' 10") and very soft spoken but she knows her stuff. She spoke to us at length about the transplant, the testing that is needed including another bone marrow draw, Ouch!, blood work and a 24 hour urine test. There may be other things after these are completed. Don't have to do the bone marrow yet but it has to be done before the transplant takes place. The process starts with receiving authorization from the insurance company.
The course of treatment she selected is for me is in three steps:
1. to have the chemo drug Velcade which is injected into the abdomen or thighs so I won't need a port at this time. I will get two shots a week for two weeks and then have two weeks off with no shots or treatment. That is a course, 28 days. She suggests 3 to 4 months of this treatment. Then they will test to see how I am responding. When mostly cancer free we move on to the 2nd step
2. Next I will receive some type of medicine to make my white blood cells multiply and to cause my blood to make more stem cells, etc. Not exactly sure what all goes on but after this medication I will have to have my blood drawn (collected) and saved. This will take about a week for medication to work and have the blood drawn in two or three times. They will make sure no cancer cells in it and freeze it.
3. I will enter the hospital and go into isolation. I will be there 10 days minimum and 30 to 45 days maximum barring complications. At that time I think I have to have a port put in. For anyone who does not know a port is inserted in your skin surgically. In lay terms it's like a permanent IV line except it usually has three openings. It is used for lots of things like blood draws, transfusions if needed, receiving chemo while in isolation and to administer other drugs as necessary.
I will receive 3 or 4 days of intense chemo at that time to kill off any remaining cancer cells and of course it also kills off some good cells. At that time I will probably lose my hair (no big deal to me - just give me hats to wear). I cannot be around anyone who is ill even with a runny nose because if I get an infection at this time it would be really hard to fight it off.
Then I will receive my cleaned blood that was drawn in step 2. It will take about a month for my blood to have enough antibodies built up that I can come out of isolation. While in there I can have my computer (but they don't provide internet, I have to work on that part! I will need to be able to blog, email, etc), I will have a phone and can read, etc. I even get 24/7 room service and nursing.
The unit is only 8 beds so I am expecting excellent care. They want me to get up and move around to keep my strength up.
SO, that is the course of treatment. After all that I have to be careful for another few months about being around large crowds of people because my resistance to illness will be very low. All in all Dr. Yuen said it will be about one year before she will feel comfortable in my returning to work away from OKC. Of course there will be followups for ever.
But the prognosis is good, just not excellent. There is the probability that the multiple myeloma will return somewhere but hopefully not any time soon. And if I can go 10 to 15 years without it coming back I will be extremely happy. Now, that time period is my own not from the doctor.
Anyway, to end this on a much lighter note than I started, we are extremely hopeful that this treatment will work and put the multiple myeloma in remission and that it will stay in remission for a long time.
As far as being home, well it has been great. We have been here about 10 days and I am worn out with visiting but also needed to be with family after being away for two years. Our granddaughter Cassisdy is a senior this year and has a research paper due before Thanksgiving. So we are getting together every night for me to help her with it. And, yes, it is just help. I am making her do all of it, just here for her to bounce her ideas off and help keep her focused (she would rather just visit with us and text her boyfriend).
The great grandkids have grown so much since we saw them briefly in May. And they remembered us. I was so glad because we had not seen them but such a short time. Of course, having Buster, our dog, with us certainly helped, too.
I am trying to go to work for H&R Block for the tax season. I believe I can get through most of tax season before they do the transplant. That money will certainly help.
We visited a church in Mustang (a suburb of OKC) on Sunday and it was wonderful. But it is so far over there and the church is so big. We prefer a much smaller church so will be looking for a church home over the next couple of Sundays.
I really didn't intend for this to become a book but sometimes I just get carried away, I have so much to tell you.
I love and miss each of my friends but know you are all praying for me and that really helps a lot.
We can receive mail directly here at 2701D Debbie, Midwest City, OK 73110 so would love to hear from any of you.
Have a wonderful day,
Jean
I was looking forward to meeting my new doctor and getting things going so I could get my bone marrow transplant and be "cured" of cancer.
At least that is the way I understood it from the doctor in TN. He said (or at least I heard) that with the bone marrow transplant I would be cured of the multiple myeloma and not have to worry about it coming back.
Well, guess what? THERE IS NO CURE!!!
Yes, that's the way I felt too. I felt like I had been slapped in the face, punched in the gut and slammed to the floor!!!!!
OK. Now that bit of information is out of the way I can tell you that I really loved the Stephenson Cancer Center at the Oklahoma University Health Sciences Complex in Oklahoma City.
When we arrived the valet was extremely friendly. We told him it was our first visit and he pointed the way to just inside the front door to the receptionist. She told us exactly how to get where we needed to be. But there is a wonderful cafeteria right there on the first floor which smelled really good. We didn't go over to look but were pleased to know that hot food is available.
I went to the Hemetology Oncology section of this building. Everyone that I was in contact with is a member of the Transplant Team. Really was not expecting to be immersed into all that on the first visit but I guess it is really good (but a little intense, too, since I had only been told I was going to be evaluated for the possibility). But after doing the first time patient paperwork I met Rick Cunningham, a social worker for the transplant team.
He is the one that delivered the No Cure statement. He let us know very early on in our conversation that "This is not a cure. It is to put the multiple myeloma into remission. There is no cure." Very straight forward but I guess that way I cannot say that I still thought there was a cure. So no misunderstanding him (and even later the doctor) and undue expectations about what will happen.
He explained to be about treatment, suggested a place to stay in the RV that is a little closer to the hospital (but I don't think we will move unless it is a lot cheaper), and basically visited with us about how important it is that I have a good caregiver. When I go into isolation Keith can come in and out as long as he is not ill but I will not be able to have visitors "with diapers" so the little ones can't come.
Rick talked with us about how we each felt about the transplant and recovery time needed. After explaining to him that I hope to return to work as soon as possible we found out that I will need to be here in OKC for about a year!! Really don't know how we will be able to do that financially BUT I will trust the Lord to provide. (Just wish I knew how, though! LOL)
Then I received a book that outlines the transplant procedure completely, from telling what each person we meet will do by their title. I was given a little time to look through that and then the doctor came in.
Dr. Carrie Yuen is a petite Asian woman (about 4' 10") and very soft spoken but she knows her stuff. She spoke to us at length about the transplant, the testing that is needed including another bone marrow draw, Ouch!, blood work and a 24 hour urine test. There may be other things after these are completed. Don't have to do the bone marrow yet but it has to be done before the transplant takes place. The process starts with receiving authorization from the insurance company.
The course of treatment she selected is for me is in three steps:
1. to have the chemo drug Velcade which is injected into the abdomen or thighs so I won't need a port at this time. I will get two shots a week for two weeks and then have two weeks off with no shots or treatment. That is a course, 28 days. She suggests 3 to 4 months of this treatment. Then they will test to see how I am responding. When mostly cancer free we move on to the 2nd step
2. Next I will receive some type of medicine to make my white blood cells multiply and to cause my blood to make more stem cells, etc. Not exactly sure what all goes on but after this medication I will have to have my blood drawn (collected) and saved. This will take about a week for medication to work and have the blood drawn in two or three times. They will make sure no cancer cells in it and freeze it.
3. I will enter the hospital and go into isolation. I will be there 10 days minimum and 30 to 45 days maximum barring complications. At that time I think I have to have a port put in. For anyone who does not know a port is inserted in your skin surgically. In lay terms it's like a permanent IV line except it usually has three openings. It is used for lots of things like blood draws, transfusions if needed, receiving chemo while in isolation and to administer other drugs as necessary.
I will receive 3 or 4 days of intense chemo at that time to kill off any remaining cancer cells and of course it also kills off some good cells. At that time I will probably lose my hair (no big deal to me - just give me hats to wear). I cannot be around anyone who is ill even with a runny nose because if I get an infection at this time it would be really hard to fight it off.
Then I will receive my cleaned blood that was drawn in step 2. It will take about a month for my blood to have enough antibodies built up that I can come out of isolation. While in there I can have my computer (but they don't provide internet, I have to work on that part! I will need to be able to blog, email, etc), I will have a phone and can read, etc. I even get 24/7 room service and nursing.
The unit is only 8 beds so I am expecting excellent care. They want me to get up and move around to keep my strength up.
SO, that is the course of treatment. After all that I have to be careful for another few months about being around large crowds of people because my resistance to illness will be very low. All in all Dr. Yuen said it will be about one year before she will feel comfortable in my returning to work away from OKC. Of course there will be followups for ever.
But the prognosis is good, just not excellent. There is the probability that the multiple myeloma will return somewhere but hopefully not any time soon. And if I can go 10 to 15 years without it coming back I will be extremely happy. Now, that time period is my own not from the doctor.
Anyway, to end this on a much lighter note than I started, we are extremely hopeful that this treatment will work and put the multiple myeloma in remission and that it will stay in remission for a long time.
As far as being home, well it has been great. We have been here about 10 days and I am worn out with visiting but also needed to be with family after being away for two years. Our granddaughter Cassisdy is a senior this year and has a research paper due before Thanksgiving. So we are getting together every night for me to help her with it. And, yes, it is just help. I am making her do all of it, just here for her to bounce her ideas off and help keep her focused (she would rather just visit with us and text her boyfriend).
The great grandkids have grown so much since we saw them briefly in May. And they remembered us. I was so glad because we had not seen them but such a short time. Of course, having Buster, our dog, with us certainly helped, too.
I am trying to go to work for H&R Block for the tax season. I believe I can get through most of tax season before they do the transplant. That money will certainly help.
We visited a church in Mustang (a suburb of OKC) on Sunday and it was wonderful. But it is so far over there and the church is so big. We prefer a much smaller church so will be looking for a church home over the next couple of Sundays.
I really didn't intend for this to become a book but sometimes I just get carried away, I have so much to tell you.
I love and miss each of my friends but know you are all praying for me and that really helps a lot.
We can receive mail directly here at 2701D Debbie, Midwest City, OK 73110 so would love to hear from any of you.
Have a wonderful day,
Jean
Thursday, November 14, 2013
Oklahoma update
Well, we have arrived in Oklahoma. Actually got here Monday, the 11th after leaving Tennessee on the 4th. We stopped in Texas for a few days at Eisenhower State Park. Had a visit with our son and his family before moving on to Oklahoma.
Before we left our wonderful crew in Texas gave us a wonderful parting gift. They gave us a gift card for fuel. It was very unexpected and greatly appreciated.
The Lord is so good at taking care of us, isn't He?
Then when we got close to Oklahoma we found out that the RV park where we planned to stay did not have any openings. But we were lead to another park (only a few miles further from the medical complex) that is a few dollars less per month an is absolutely wonderful. We are set up on a beautiful new slab (so no mud to continue with after a snow or rain) with plenty of room to set up our trailer with full electric so we can work on our toys (and possibly keep a little income coming in).
The first appointment with the Stephenson Cancer Center at University of Oklahoma Health Sciences is Tuesday, November 19. I am scheduled to see a Dr. Yin (Yen). Don't know anything about them but I am certain that it will exactly the Doctor that I need to see.
We are also planning on visiting the Mustang Church of the Nazarene with our daughter this Sunday. Our pastor and his wife are friends with members there.
Will post more after seeing the doctor on next Tuesday.
Keep praying for me as I know that's why things are going so well.
Jean
Before we left our wonderful crew in Texas gave us a wonderful parting gift. They gave us a gift card for fuel. It was very unexpected and greatly appreciated.
The Lord is so good at taking care of us, isn't He?
Then when we got close to Oklahoma we found out that the RV park where we planned to stay did not have any openings. But we were lead to another park (only a few miles further from the medical complex) that is a few dollars less per month an is absolutely wonderful. We are set up on a beautiful new slab (so no mud to continue with after a snow or rain) with plenty of room to set up our trailer with full electric so we can work on our toys (and possibly keep a little income coming in).
The first appointment with the Stephenson Cancer Center at University of Oklahoma Health Sciences is Tuesday, November 19. I am scheduled to see a Dr. Yin (Yen). Don't know anything about them but I am certain that it will exactly the Doctor that I need to see.
We are also planning on visiting the Mustang Church of the Nazarene with our daughter this Sunday. Our pastor and his wife are friends with members there.
Will post more after seeing the doctor on next Tuesday.
Keep praying for me as I know that's why things are going so well.
Jean
Friday, November 1, 2013
November 1, 2013
WE ARE GOING HOME TO OKLAHOMA!!!!!!!!!!!!!! YEAH.
But I have to catch you up, first.
Friday, Oct 25 I got a call to start my cyberknife treatments on October 28. So I had a treatment for three days, Monday, Tuesday and Wednesday. The treatments lasted about 1.5 hours and so far I have had no side effects other than a little soreness in my back caused by laying flat of my back for that hour and a half each day. I may have a few other side effects but whatever they are will be nothing compared to the 90 to 95% cure rate for this type of lung cancer that I have/had.
I also saw Dr. Aljadir on Monday the 28th and he is trying to get me an appointment with the Stephenson Cancer Center at the University of Oklahoma in Oklahoma City. They will treat me for the multiple myeloma and I will have a recheck for the lung cancer in January.
I am so glad to be going on to this next step for getting rid of this cancer.
Because of our friend John we were able to go to church together last Sunday and had a great time with our church family at a final lunch after the service. Almost 30 people turned out to tell us goodbye. We even accused one man of wanting to buy fuel for the motor home just to get rid of us. He denied that (and did not buy any fuel, which we did not want, anyway).
On the last day of treatment, Wednesday, we met with Ray and Donna Couey (our pastor and wife) and Gary and Bonnie Honea (our closest friends at church) for the final, final contact with our Knoxville-area friends. It was bittersweet as we ladies tried not to cry, but we were not very successful.
Now we have been trying to finish up everything else and keep ourselves busy until we can leave on Monday, the 4th.
Our replacement crew will be here on Sunday so we can show them the ropes, we will work Sunday night, and then they take over as of Monday. We leave before noon (as soon as the dog gets groomed) and away we go.
Going to Denison, Texas to visit our youngest son and his family before going on up to Oklahoma City. We always look forward to having our two grandsons, Glen and Tyler, visit with us at the lake when we get to see them. It has become a tradition that we spend our time with them so we can have cookouts and fish for the weekend.
THIS JUST IN: Got a phone call from the doctor's office. I now have my first appointment in Oklahoma, November 19 at 2:00 pm with a Dr. Yin (or Dr. Yen). They didn't tell me how to spell it but it doesn't matter. I am on my way toward getting cured.
I will keep posting to this blog to keep all my friends and family posted about the treatments. Love to get your comments. And, Gary, I can't wait to get home either! Looking forward to seeing you and your family soon.
Love to all. I probably won't post anything else for a few days but I do appreciate your prayers and thoughts.
Jean
But I have to catch you up, first.
Friday, Oct 25 I got a call to start my cyberknife treatments on October 28. So I had a treatment for three days, Monday, Tuesday and Wednesday. The treatments lasted about 1.5 hours and so far I have had no side effects other than a little soreness in my back caused by laying flat of my back for that hour and a half each day. I may have a few other side effects but whatever they are will be nothing compared to the 90 to 95% cure rate for this type of lung cancer that I have/had.
I also saw Dr. Aljadir on Monday the 28th and he is trying to get me an appointment with the Stephenson Cancer Center at the University of Oklahoma in Oklahoma City. They will treat me for the multiple myeloma and I will have a recheck for the lung cancer in January.
I am so glad to be going on to this next step for getting rid of this cancer.
Because of our friend John we were able to go to church together last Sunday and had a great time with our church family at a final lunch after the service. Almost 30 people turned out to tell us goodbye. We even accused one man of wanting to buy fuel for the motor home just to get rid of us. He denied that (and did not buy any fuel, which we did not want, anyway).
On the last day of treatment, Wednesday, we met with Ray and Donna Couey (our pastor and wife) and Gary and Bonnie Honea (our closest friends at church) for the final, final contact with our Knoxville-area friends. It was bittersweet as we ladies tried not to cry, but we were not very successful.
Now we have been trying to finish up everything else and keep ourselves busy until we can leave on Monday, the 4th.
Our replacement crew will be here on Sunday so we can show them the ropes, we will work Sunday night, and then they take over as of Monday. We leave before noon (as soon as the dog gets groomed) and away we go.
Going to Denison, Texas to visit our youngest son and his family before going on up to Oklahoma City. We always look forward to having our two grandsons, Glen and Tyler, visit with us at the lake when we get to see them. It has become a tradition that we spend our time with them so we can have cookouts and fish for the weekend.
THIS JUST IN: Got a phone call from the doctor's office. I now have my first appointment in Oklahoma, November 19 at 2:00 pm with a Dr. Yin (or Dr. Yen). They didn't tell me how to spell it but it doesn't matter. I am on my way toward getting cured.
I will keep posting to this blog to keep all my friends and family posted about the treatments. Love to get your comments. And, Gary, I can't wait to get home either! Looking forward to seeing you and your family soon.
Love to all. I probably won't post anything else for a few days but I do appreciate your prayers and thoughts.
Jean
Saturday, October 26, 2013
More amazing info
Well, I got bad news when they looked at the CT scan done at the last post. The gold fiducials there were inserted are NOT in the tumor like they are supposed to be.
So I had to go back in for yet another CT scan. The good news was that the tumor doesn't move very much when I breathe so we are good to go for the CyberKnife.
The bad news was that they couldn't get it started until October 28.
But more info: We are going home! After 2 years we are returning to Oklahoma for about 6 months. We officially will be relieved from our job on Monday, November 4 at 6:30 am (after working Sunday and Sunday night).
Our replacements will be here on Sunday for us to go over the paperwork so they know what they need to do. The job will actually last until Thanksgiving but I need to be in Oklahoma starting my treatments on the bone marrow cancer before that.
Our friend will work for us tomorrow so we can both go to church (at the same time). Our friends at church want to have lunch with both of us to say goodbye and we are really looking forward to it. Not the saying goodbye but having lunch with all the friends and especially being in church together.
My Cyberknife will be Monday at 9:30 am and the Tuesday and Wednesday at a time to be determined after the first visit. I have been told that I may be on the table for up to three hours (flat on my back). But we hope that it will not be that long. The length of time will determine what time the appointments will be on Tuesday and Wednesday.
I also have an appointment with Dr. Aljadir Monday (at 9:15 am). I have contacted them and they are going to accommodate me to see the doctor when I am finished with the CyberKnife. From him I hope to learn who I am to see in Oklahoma and when. Then I have to change my insurance so I have coverage to the doctor that I am to see there.
More Good News: Social Security determined that I would get more money than they first thought which will certainly help since we will not be working on a job.
God is so GOOD. He is taking care of everything.
When we leave Tennessee we are going to our son Robert's for a long weekend. Then on to Oklahoma City.
Have a great day everyone. I know I will.
So I had to go back in for yet another CT scan. The good news was that the tumor doesn't move very much when I breathe so we are good to go for the CyberKnife.
The bad news was that they couldn't get it started until October 28.
But more info: We are going home! After 2 years we are returning to Oklahoma for about 6 months. We officially will be relieved from our job on Monday, November 4 at 6:30 am (after working Sunday and Sunday night).
Our replacements will be here on Sunday for us to go over the paperwork so they know what they need to do. The job will actually last until Thanksgiving but I need to be in Oklahoma starting my treatments on the bone marrow cancer before that.
Our friend will work for us tomorrow so we can both go to church (at the same time). Our friends at church want to have lunch with both of us to say goodbye and we are really looking forward to it. Not the saying goodbye but having lunch with all the friends and especially being in church together.
My Cyberknife will be Monday at 9:30 am and the Tuesday and Wednesday at a time to be determined after the first visit. I have been told that I may be on the table for up to three hours (flat on my back). But we hope that it will not be that long. The length of time will determine what time the appointments will be on Tuesday and Wednesday.
I also have an appointment with Dr. Aljadir Monday (at 9:15 am). I have contacted them and they are going to accommodate me to see the doctor when I am finished with the CyberKnife. From him I hope to learn who I am to see in Oklahoma and when. Then I have to change my insurance so I have coverage to the doctor that I am to see there.
More Good News: Social Security determined that I would get more money than they first thought which will certainly help since we will not be working on a job.
God is so GOOD. He is taking care of everything.
When we leave Tennessee we are going to our son Robert's for a long weekend. Then on to Oklahoma City.
Have a great day everyone. I know I will.
Tuesday, October 15, 2013
Getting Closer to being cured!
October 15, 2013
I have had two weeks off since my lung procedure to insert the gold so today I got to see Dr. Kelley who checked me out to make sure I was healthy to have the CyberKnife done. He gave me the all clear and I had a CT scan which they will use to plan the Cyber Knife treatment.
Dr. Kelley said they will probably do that procedure for 3 to 5 days depending on what they see on this CT scan. That will be done next week.
I then have an appointment with Dr. Aljadir, the medical oncologist, on the 28th. He is supposed to be setting up a transfer of my treatment to OU Health Sciences Center in Oklahoma City.
Our job is supposed to be over by the first week of November and we are heading HOME!!!!!!!!! I am so excited. We have found an RV park that is 15 minutes from the hospital/doctors where I will be receiving treatment. There is a Nazarene Church within a two mile radius so we can go to church near where we will be staying.
And I am hoping to get work at the H&R Block office in the neighborhood (again within a 2 mile radius of the hospital). This will help us while we can't take a monitoring job and will give me something to do.
The Lord is just working out things for us in such an amazing way. Can't wait to see what the next step is going to be.
Hoping to be in Oklahoma City before Thanksgiving! I am ready to go Home and see my family.
Have a great week.
Jean
I have had two weeks off since my lung procedure to insert the gold so today I got to see Dr. Kelley who checked me out to make sure I was healthy to have the CyberKnife done. He gave me the all clear and I had a CT scan which they will use to plan the Cyber Knife treatment.
Dr. Kelley said they will probably do that procedure for 3 to 5 days depending on what they see on this CT scan. That will be done next week.
I then have an appointment with Dr. Aljadir, the medical oncologist, on the 28th. He is supposed to be setting up a transfer of my treatment to OU Health Sciences Center in Oklahoma City.
Our job is supposed to be over by the first week of November and we are heading HOME!!!!!!!!! I am so excited. We have found an RV park that is 15 minutes from the hospital/doctors where I will be receiving treatment. There is a Nazarene Church within a two mile radius so we can go to church near where we will be staying.
And I am hoping to get work at the H&R Block office in the neighborhood (again within a 2 mile radius of the hospital). This will help us while we can't take a monitoring job and will give me something to do.
The Lord is just working out things for us in such an amazing way. Can't wait to see what the next step is going to be.
Hoping to be in Oklahoma City before Thanksgiving! I am ready to go Home and see my family.
Have a great week.
Jean
Thursday, September 26, 2013
God is so Powerful!!!
I am feeling so blessed today. I just had to share. God has had his powerful hand in all of this illness (as he always does, but sometimes we just don't see it!). He has been making Himself known to me in such wonderous ways. I just have to list all of this in one place. I am certainly learning that things do happen in in His time.
1. December 14, 2011 - first experienced severe pain in my right collarbone and the bone moved. Pain finally eased but bone stayed out of place.
2. May 30, 2012 - Trying to get up from the ground where I had been sitting doing some work experienced severe pain again. Went to physical therapy and they were able to place bone back and relieve the pain. Still had a knot. No doctor would address the knot. They all wanted to talk about my shoulder although I wanted them to address the collarbone.
3. November, 2012 - went to Cherokee with church and threw the collarbone out yet again. Severe pain. Again physical therapy to relieve the pain and again the doctors ignore the knot on the collarbone. I felt the bone was out of place.
Ok, you ask, where is God in all this. Oh, He was there all the time. I just wasn't seeing Him in all this. That sounds typical, doesn't it? Please just keep reading.
4. May 20, 2013 - My aunt died in Oklahoma. I made arrangements to go to the funeral and to be with my mom. Only problem was, Mom died on May 25 before I got there. It was a very fast trip from TN to OK for this double funeral and we stayed when and where we could for accommodations (no handicapped motel rooms available when we would stop on the spur of the moment). So I called back to the doctor and physical therapy to have it scheduled for when I got back.
(this is where it gets good)
5. June 3, 2013 - Went to physical therapy but this time the pain was different and the knot on my collar bone was different. My physical therapist insisted that I see a specialist in collar bone and shoulders. He saw me in July and ordered
6. August 6, 2013 - Diagnosed with cancer in 4 places. Hang on, now, it gets so fast.
7. August 12, 2013 - Oncology appointment with Dr. David Aljadir. He sent me for bioposies and to be evaluated for radiation.
8. August 27, 2013 - Radiation appointment with Dr. Joseph Kelley.
9. September 4 thru September 17, 2013 - 10 days of radiation on my collarbone and T-12. The knot on my collarbone is smaller.
10. September 16, 2013 - Dr. Aljadir told me lung cancer can be completely cured with CyberKnife.
11. September 17, 2013 - Dr. Joseph Kelley sent me to a pulmonary doctor and told me I will be scheduled for CyberKnife no later than the end of October. I committed to staying in Knoxville area until then for this treatment even though we think the job will finish up the end of September.
12. September 20, 2013 - Pulmonary doctor - Dr. Paul Branca - made me an appointment for placing gold fiducials.
13. September 23, 2013 - Insertion of fiducials (5 pieces of gold about the size of mustard seeds).
And now, the topper...
14. September 25, 2013 - Received word that our job is extended yet again (we thought it would be over in March of this year but keeps getting extended a little bit at a time). This time they have enough funding to go until....... End of October or 1 week in November!
God is so good. He has not only put me and kept me in this area for diagnosis and treatment.
And He keeps us employed so we can afford to stay here. He got me to the right Cancer Center (University of Tennessee Medical Center) and to the right doctors.
3 doctors - named David, Joseph and Paul (all good Bibical names)
Immediate appointments when others could not get me in for three weeks.
Gold fiducials about the size of "a grain of mustard seed".
Extension of job to just exactly the time we need to get this first phase of treatment.
And, if you have read this all the way through, I appreciate it. And if not, well, it has been good for me to list it all as a reminder of how good and powerful God is and to remind myself to watch for God in everything.
Thank you, Lord, for all these reminders that you are in everything, Help me to never forget that and help me to praise you in all things. Amen.
Humbly,
Jean
1. December 14, 2011 - first experienced severe pain in my right collarbone and the bone moved. Pain finally eased but bone stayed out of place.
2. May 30, 2012 - Trying to get up from the ground where I had been sitting doing some work experienced severe pain again. Went to physical therapy and they were able to place bone back and relieve the pain. Still had a knot. No doctor would address the knot. They all wanted to talk about my shoulder although I wanted them to address the collarbone.
3. November, 2012 - went to Cherokee with church and threw the collarbone out yet again. Severe pain. Again physical therapy to relieve the pain and again the doctors ignore the knot on the collarbone. I felt the bone was out of place.
Ok, you ask, where is God in all this. Oh, He was there all the time. I just wasn't seeing Him in all this. That sounds typical, doesn't it? Please just keep reading.
4. May 20, 2013 - My aunt died in Oklahoma. I made arrangements to go to the funeral and to be with my mom. Only problem was, Mom died on May 25 before I got there. It was a very fast trip from TN to OK for this double funeral and we stayed when and where we could for accommodations (no handicapped motel rooms available when we would stop on the spur of the moment). So I called back to the doctor and physical therapy to have it scheduled for when I got back.
(this is where it gets good)
5. June 3, 2013 - Went to physical therapy but this time the pain was different and the knot on my collar bone was different. My physical therapist insisted that I see a specialist in collar bone and shoulders. He saw me in July and ordered
6. August 6, 2013 - Diagnosed with cancer in 4 places. Hang on, now, it gets so fast.
7. August 12, 2013 - Oncology appointment with Dr. David Aljadir. He sent me for bioposies and to be evaluated for radiation.
8. August 27, 2013 - Radiation appointment with Dr. Joseph Kelley.
9. September 4 thru September 17, 2013 - 10 days of radiation on my collarbone and T-12. The knot on my collarbone is smaller.
10. September 16, 2013 - Dr. Aljadir told me lung cancer can be completely cured with CyberKnife.
11. September 17, 2013 - Dr. Joseph Kelley sent me to a pulmonary doctor and told me I will be scheduled for CyberKnife no later than the end of October. I committed to staying in Knoxville area until then for this treatment even though we think the job will finish up the end of September.
12. September 20, 2013 - Pulmonary doctor - Dr. Paul Branca - made me an appointment for placing gold fiducials.
13. September 23, 2013 - Insertion of fiducials (5 pieces of gold about the size of mustard seeds).
And now, the topper...
14. September 25, 2013 - Received word that our job is extended yet again (we thought it would be over in March of this year but keeps getting extended a little bit at a time). This time they have enough funding to go until....... End of October or 1 week in November!
God is so good. He has not only put me and kept me in this area for diagnosis and treatment.
And He keeps us employed so we can afford to stay here. He got me to the right Cancer Center (University of Tennessee Medical Center) and to the right doctors.
3 doctors - named David, Joseph and Paul (all good Bibical names)
Immediate appointments when others could not get me in for three weeks.
Gold fiducials about the size of "a grain of mustard seed".
Extension of job to just exactly the time we need to get this first phase of treatment.
And, if you have read this all the way through, I appreciate it. And if not, well, it has been good for me to list it all as a reminder of how good and powerful God is and to remind myself to watch for God in everything.
Thank you, Lord, for all these reminders that you are in everything, Help me to never forget that and help me to praise you in all things. Amen.
Humbly,
Jean
Wednesday, September 25, 2013
Latest Update
Well, it has been a while since I wrote. To be truthful, I forgot my password! That is so crazy. I never forget my passwords (and I have a lot of them).
But this blog is about my cancer diagnosis and treatment and my feelings and thoughts. So, here goes.
On Friday, September 20 I saw the pulmonary doctor who then informed me that I was scheduled for a CT scan that same day. So I got two appointment for one trip. I like that. I also had to do some breathing tests. Guess they wanted to do as much in one day as possible.
Then, I was scheduled for the placement of the gold into the lung tumor. They are called fiducials and are to help guide the CyberKnife. I just didn't expect to have this procedure quite so quickly but I am glad that it was done. They went down my throat, and into the lungs. They placed 5 small gold pieces (about the size of a grain of mustard seed). While they were in there they also biopsied a couple of lymph nodes that are between the lungs. Not that they think there is anything there but just to be on the safe side. Better to do it while I was comfortably asleep (thanks to Propopal, yes, the Michael Jackson drug) than to have to face another biopsy later.
I am having a little problems from the procedure but none that are unexpected. Any time they disturb the lungs and that whole area there is a little discomfort and coughing. That's about it.
Now I have to wait for the results of those lymph node biopsies. If there is not any disturbing there we will still have to wait 7 to 10 days before the next step. This is to give the fiducials some time to settle down in the tumor. Apparently they will possibly shift some for the first few days. Then after they settle the next step will be to have a CT scan to mark out the path of the CyberKnife. Then another wait while the Physics Department details exactly how the CyberKnife will work.
The way I understand it the CK (for short) will go around my body in a 360 degree circle. Imagine the face of a clock. It has 60 minutes. Well, the CK will hit 100 points on it's way around. Each time it will connect to one of the fiducials so it is always exactly on the tumor.
Only 3 to 5 treatments lasting about 2 to 3 hours and that tumor will be gone, probably to never return.
Oh, yeah, and I get to keep the gold! The tumor will die leaving just scar tissue. The gold will remain in there.
So, just remember the next time I see you, I am worth more than I was the last time you saw me. After all, gold is worth a lot these days. LOL
My general health is still very good (as good as it ever was), my spirits are great and I am looking forward to getting this cancer out of my body so I can quit having so many doctor appointments.
I have many other things that I want to do including working on our wooden toys and games, taking them to craft shows and working on our web site. If you haven't checked it out go to www.travelingtoymaker.com. Doesn't look too bad even if I do say so. I have prepared it with a LOT of help from my brother Steve. We have very interesting lessons over Skype. He is in Ecuador, I am in Tennessee. But he is an excellent teacher and is very patient with me, even when I am being thickheaded. Thanks to him it is looking good. Now we have to wait to see if the public finds it and wants some of these awesome toys. Wish us luck. I would love to be able to make enough money on the toys that we could actually not work so much and still be able to do some traveling. We can do this because we have our workshop in the trailer that carries our car. So we can be anywhere and still make toys. I love it. Wish we had done this years ago.
I don't have any appointments scheduled at this time. I am enjoying not having to go to Knoxville this week and I'm sure that Keith is glad to have a week of not taking me. He does not like hospitals and sitting around and waiting but he is being a great strength. Our pastor showed up Monday to keep him company and make sure he ate lunch while waiting for me. Thanks, Pastor Couey. Really appreciate it.
I am taking our toys to a craft show on October 5 and sure hope it is nice weather because it is outside. Keith can't go with me but I have a friend who will be there with her stuff. She and her family have offered to set up the tent and tables and help me if I need it. I really appreciate that.
Have a great week. I know I will.
Love to all,
Jean
But this blog is about my cancer diagnosis and treatment and my feelings and thoughts. So, here goes.
On Friday, September 20 I saw the pulmonary doctor who then informed me that I was scheduled for a CT scan that same day. So I got two appointment for one trip. I like that. I also had to do some breathing tests. Guess they wanted to do as much in one day as possible.
Then, I was scheduled for the placement of the gold into the lung tumor. They are called fiducials and are to help guide the CyberKnife. I just didn't expect to have this procedure quite so quickly but I am glad that it was done. They went down my throat, and into the lungs. They placed 5 small gold pieces (about the size of a grain of mustard seed). While they were in there they also biopsied a couple of lymph nodes that are between the lungs. Not that they think there is anything there but just to be on the safe side. Better to do it while I was comfortably asleep (thanks to Propopal, yes, the Michael Jackson drug) than to have to face another biopsy later.
I am having a little problems from the procedure but none that are unexpected. Any time they disturb the lungs and that whole area there is a little discomfort and coughing. That's about it.
Now I have to wait for the results of those lymph node biopsies. If there is not any disturbing there we will still have to wait 7 to 10 days before the next step. This is to give the fiducials some time to settle down in the tumor. Apparently they will possibly shift some for the first few days. Then after they settle the next step will be to have a CT scan to mark out the path of the CyberKnife. Then another wait while the Physics Department details exactly how the CyberKnife will work.
The way I understand it the CK (for short) will go around my body in a 360 degree circle. Imagine the face of a clock. It has 60 minutes. Well, the CK will hit 100 points on it's way around. Each time it will connect to one of the fiducials so it is always exactly on the tumor.
Only 3 to 5 treatments lasting about 2 to 3 hours and that tumor will be gone, probably to never return.
Oh, yeah, and I get to keep the gold! The tumor will die leaving just scar tissue. The gold will remain in there.
So, just remember the next time I see you, I am worth more than I was the last time you saw me. After all, gold is worth a lot these days. LOL
My general health is still very good (as good as it ever was), my spirits are great and I am looking forward to getting this cancer out of my body so I can quit having so many doctor appointments.
I have many other things that I want to do including working on our wooden toys and games, taking them to craft shows and working on our web site. If you haven't checked it out go to www.travelingtoymaker.com. Doesn't look too bad even if I do say so. I have prepared it with a LOT of help from my brother Steve. We have very interesting lessons over Skype. He is in Ecuador, I am in Tennessee. But he is an excellent teacher and is very patient with me, even when I am being thickheaded. Thanks to him it is looking good. Now we have to wait to see if the public finds it and wants some of these awesome toys. Wish us luck. I would love to be able to make enough money on the toys that we could actually not work so much and still be able to do some traveling. We can do this because we have our workshop in the trailer that carries our car. So we can be anywhere and still make toys. I love it. Wish we had done this years ago.
I don't have any appointments scheduled at this time. I am enjoying not having to go to Knoxville this week and I'm sure that Keith is glad to have a week of not taking me. He does not like hospitals and sitting around and waiting but he is being a great strength. Our pastor showed up Monday to keep him company and make sure he ate lunch while waiting for me. Thanks, Pastor Couey. Really appreciate it.
I am taking our toys to a craft show on October 5 and sure hope it is nice weather because it is outside. Keith can't go with me but I have a friend who will be there with her stuff. She and her family have offered to set up the tent and tables and help me if I need it. I really appreciate that.
Have a great week. I know I will.
Love to all,
Jean
Monday, September 16, 2013
Latest report on biopsies and other info
What a wonderful weekend!
The weather was absolutely beautiful, in mid 70's and low 80's days, and mid-50's at night.
And there's something about being told you are have not been given a death sentence that makes every day more wonderful.
After the doctor called on Thursday and told me that the lung cancer is actually confined to the lung and can be treated, I felt as if a weight was lifted off me.
Today we sat that same doctor to get his plan for my recovery.
1. Kill out the lung cancer by using the CyberKnife for 2 to 5 treatments.
2. Chemotherapy (several, number not specified, cycles). The therapy he has recommended is a combination of 2 things. Shots to be given in my stomach, not through IV or port. A cycle is 28 days. One shot per week for 2 weeks then off two weeks. I think even I can handle that.
3. A bone marrow transplant. This is an option that would probably extend the time before the possibility of the cancer returning for 10 to 15 years.
He has recommended that I go to Vanderbilt in Nashville, TN to be evaluated for the possibility of the transplant. I have told him that I would prefer to have that evaluation (and possibly treatment) in Oklahoma where my family would be closer.
This transplant would consist of the following steps:
1. I would have to be evaluated to see if I am a candidate.
2. I would have to accept having that treatment.
3. I would take chemo until they get rid of the cancer.
4. They would give me shots of something to make me produce more white cells.
5. They would draw my blood (not bone marrow) for two days straight.
6. They would store this and be able to pull out the items needed for the transplant.
7. They would give me intensive chemo and I would have to be hospitalized in isolation during this time.
8. When my body was ready (all bone marrow killed) then would then give me the transplant but it would be my own marrow and cells.
9. I would stay hospitalized for another period of time, in isolation, until recovered (another 2 or 3 weeks).
10. This would extend my life by several years.
I would certainly like to hear any feedback that you can provide. I don't know even if it is a good thing to do. He said he would not even suggest it if I was 80, but since I was "a young woman" (his words, not mine, for all those who are laughing right now). I thought it was a great compliment since I am applying for my Social Security this week (I will be 65 in February).!!!
The reason he would do the chemo as listed above is to make me eligible to do the transplant. If I chose not to do the transplant the treatment would be different and more aggressive.
I see the Radiation Oncologist tomorrow to do my final radiation treatment and find out when he will do the CyberKnife.
Part of my question is whether the job will last long enough to do the therapy. When this job is over we will be going to Oklahoma. But the doctor says that this treatment can be done anywhere.
I also see the pulmonary doctor on Friday.
Will not post again until after the Friday appointment, but do hope to hear back from some of you to help me make this decision on the transplant. You can call 918-284-9117, email or reply to the blog.
Looking for a little feedback,
Jean
The weather was absolutely beautiful, in mid 70's and low 80's days, and mid-50's at night.
And there's something about being told you are have not been given a death sentence that makes every day more wonderful.
After the doctor called on Thursday and told me that the lung cancer is actually confined to the lung and can be treated, I felt as if a weight was lifted off me.
Today we sat that same doctor to get his plan for my recovery.
1. Kill out the lung cancer by using the CyberKnife for 2 to 5 treatments.
2. Chemotherapy (several, number not specified, cycles). The therapy he has recommended is a combination of 2 things. Shots to be given in my stomach, not through IV or port. A cycle is 28 days. One shot per week for 2 weeks then off two weeks. I think even I can handle that.
3. A bone marrow transplant. This is an option that would probably extend the time before the possibility of the cancer returning for 10 to 15 years.
He has recommended that I go to Vanderbilt in Nashville, TN to be evaluated for the possibility of the transplant. I have told him that I would prefer to have that evaluation (and possibly treatment) in Oklahoma where my family would be closer.
This transplant would consist of the following steps:
1. I would have to be evaluated to see if I am a candidate.
2. I would have to accept having that treatment.
3. I would take chemo until they get rid of the cancer.
4. They would give me shots of something to make me produce more white cells.
5. They would draw my blood (not bone marrow) for two days straight.
6. They would store this and be able to pull out the items needed for the transplant.
7. They would give me intensive chemo and I would have to be hospitalized in isolation during this time.
8. When my body was ready (all bone marrow killed) then would then give me the transplant but it would be my own marrow and cells.
9. I would stay hospitalized for another period of time, in isolation, until recovered (another 2 or 3 weeks).
10. This would extend my life by several years.
I would certainly like to hear any feedback that you can provide. I don't know even if it is a good thing to do. He said he would not even suggest it if I was 80, but since I was "a young woman" (his words, not mine, for all those who are laughing right now). I thought it was a great compliment since I am applying for my Social Security this week (I will be 65 in February).!!!
The reason he would do the chemo as listed above is to make me eligible to do the transplant. If I chose not to do the transplant the treatment would be different and more aggressive.
I see the Radiation Oncologist tomorrow to do my final radiation treatment and find out when he will do the CyberKnife.
Part of my question is whether the job will last long enough to do the therapy. When this job is over we will be going to Oklahoma. But the doctor says that this treatment can be done anywhere.
I also see the pulmonary doctor on Friday.
Will not post again until after the Friday appointment, but do hope to hear back from some of you to help me make this decision on the transplant. You can call 918-284-9117, email or reply to the blog.
Looking for a little feedback,
Jean
Thursday, September 12, 2013
God is still in the Miracle Business
After being told on Monday that it was possible that I might only have 12 months to live if the remaining spots were Lung Cancer, the biopsies came back with those spots being multiple myeloma. PRAISE THE LORD.
My doctor, Dr. Aljadir, personally called me at 8:10 am after he presented my case to the tumor board this morning. He said, "I thought you might like this news sooner than later and that it might help you have a better weekend." He then told me that they will be able to treat the one incidence of lung cancer with the CyberKnife in about 3 treatments. That will be wonderful. I can handle that.
Will find out all of the details of treating the multiple myeloma (chemo) on Monday and then will let you all know, but had to share this great news now!
GOD IS STILL ON THE THRONE.
A much happier person this evening,
Jean
My doctor, Dr. Aljadir, personally called me at 8:10 am after he presented my case to the tumor board this morning. He said, "I thought you might like this news sooner than later and that it might help you have a better weekend." He then told me that they will be able to treat the one incidence of lung cancer with the CyberKnife in about 3 treatments. That will be wonderful. I can handle that.
Will find out all of the details of treating the multiple myeloma (chemo) on Monday and then will let you all know, but had to share this great news now!
GOD IS STILL ON THE THRONE.
A much happier person this evening,
Jean
Tuesday, September 10, 2013
And I thought yesterday was bad!
September 10, 2013
Well, after practically being given a death sentence of one year yesterday, today has been such an up and down day.
I had radiation scheduled for 9:00 am and triple biopsy (not bypass, but biopsy) today at 10:30 am. Well, Dr. Kelley, the radiation oncologist wanted to see me after my treatment. Not an unusual thing, since he sees all radiation patients once a week and I had just completed by 5th treatment. He explained that he has been talking with Dr. Aljadir, my medical oncologist, about my case and they really thing the biopsies today are going to show just multiple myeloma and not lung cancer. If that is the case then Dr. Kelley says that three treatments with the CyberKnife will take care of the lung cancer and there is a 95% cure rate and it never comes back. (Emotion 1: Relief)
I then asked him about the size of the tumor on my T12 spine. He showed me a CT scan picture and that tumor is taking up over 1/4 and almost 1/2 of my vertebra. For the first time I realized that if it is allowed to progress it could cause paralysis if it gets into the spinal cord. (Emotion 2: Being really scared)
So, then I went to the IR (Interventional Radiology) for the biopsies. I was so distressed that the wonderful nurse who has taken care of me the other two times, Tammy, hugged me and let me cry. (Emotion 3: Relief at being able to say how scared I was and being comforted)
Then the doctor came in and said he was not going to do biopsy on T-12. (Emotion 4: Anger) I explained as calmly as I could to the doctor (and I was not very calm) that I was weary and exhausted and financially hurt by having to come back for biopsies all the time and now they were not going to do one of the biopsies. Besides the toll that it takes on my body (my blood pressure goes up to about 238/105 every time I go in there, even with medication), having to have the different parts of my body invaded as they take tissue and/or bone pieces during the biopsy, and financially the fact that it costs me $150 copay for every one of these procedures, the emotional impact is just dragging me down. And now he tells me he is not going to do one of the three biopsies that the doctor asked them to do.
I then pulled out my doctor's orders and asked this doctor if that meant that this paper was not worth anything!!! I was so mad. Then he said something that brought on another emotion (Emotion 5: Thankfulness). He said as a doctor he has to "First, do no harm". He went on to explain that there was a certain risk to doing the biopsy on the T-11. That I could be totally paralyzed from the waist down (Emotion 6: Fear) Just didn't realize that danger existed in doing the biopsy.
They gave me Versaid and another drug so I was not in pain and did not remember the biopsy on my hip. I was awake off and on while they did the biopsy on the lymph node. But it didn't hurt. When I went to recovery and found out that I could finally eat today (had not had anything to eat or drink since midnight last night and it was now 3:00 pm) I had the final emotion of the day (Emotion 7: Happy). I was happy that I could eat.
Oh, yes, and Keith was able to visit the medical oncologist office and reschedule my appointment with him to Monday, September 16 instead of the following Friday. So we will find out all the results that morning. (Emotion 8: Relief)
So yes, this was a day of ups and downs, highs and lows... well, you get the picture.
I am already so tired of all this running and I told Keith today that I could see why some people just give up and don't want to pursue treatment any more. Not that I am there at all, but I just can see why after a few years that a cancer patient can get to that point. This trying to get well is exhausting, taxing on your body, and very well worth it!
So, now I will be posting again on the 16th after I get the results.
I hope everyone's day has been smoother than mine. In fact, I hope you have had an excellent day!!!
Still trusting the Lord. I can do all things, through Christ, who strengthens me. Thank you Lord, for this promise. Please help me to remember it in all situations.
Keep your chin up, Everyone.
Love to all,
Jean
Well, after practically being given a death sentence of one year yesterday, today has been such an up and down day.
I had radiation scheduled for 9:00 am and triple biopsy (not bypass, but biopsy) today at 10:30 am. Well, Dr. Kelley, the radiation oncologist wanted to see me after my treatment. Not an unusual thing, since he sees all radiation patients once a week and I had just completed by 5th treatment. He explained that he has been talking with Dr. Aljadir, my medical oncologist, about my case and they really thing the biopsies today are going to show just multiple myeloma and not lung cancer. If that is the case then Dr. Kelley says that three treatments with the CyberKnife will take care of the lung cancer and there is a 95% cure rate and it never comes back. (Emotion 1: Relief)
I then asked him about the size of the tumor on my T12 spine. He showed me a CT scan picture and that tumor is taking up over 1/4 and almost 1/2 of my vertebra. For the first time I realized that if it is allowed to progress it could cause paralysis if it gets into the spinal cord. (Emotion 2: Being really scared)
So, then I went to the IR (Interventional Radiology) for the biopsies. I was so distressed that the wonderful nurse who has taken care of me the other two times, Tammy, hugged me and let me cry. (Emotion 3: Relief at being able to say how scared I was and being comforted)
Then the doctor came in and said he was not going to do biopsy on T-12. (Emotion 4: Anger) I explained as calmly as I could to the doctor (and I was not very calm) that I was weary and exhausted and financially hurt by having to come back for biopsies all the time and now they were not going to do one of the biopsies. Besides the toll that it takes on my body (my blood pressure goes up to about 238/105 every time I go in there, even with medication), having to have the different parts of my body invaded as they take tissue and/or bone pieces during the biopsy, and financially the fact that it costs me $150 copay for every one of these procedures, the emotional impact is just dragging me down. And now he tells me he is not going to do one of the three biopsies that the doctor asked them to do.
I then pulled out my doctor's orders and asked this doctor if that meant that this paper was not worth anything!!! I was so mad. Then he said something that brought on another emotion (Emotion 5: Thankfulness). He said as a doctor he has to "First, do no harm". He went on to explain that there was a certain risk to doing the biopsy on the T-11. That I could be totally paralyzed from the waist down (Emotion 6: Fear) Just didn't realize that danger existed in doing the biopsy.
They gave me Versaid and another drug so I was not in pain and did not remember the biopsy on my hip. I was awake off and on while they did the biopsy on the lymph node. But it didn't hurt. When I went to recovery and found out that I could finally eat today (had not had anything to eat or drink since midnight last night and it was now 3:00 pm) I had the final emotion of the day (Emotion 7: Happy). I was happy that I could eat.
Oh, yes, and Keith was able to visit the medical oncologist office and reschedule my appointment with him to Monday, September 16 instead of the following Friday. So we will find out all the results that morning. (Emotion 8: Relief)
So yes, this was a day of ups and downs, highs and lows... well, you get the picture.
I am already so tired of all this running and I told Keith today that I could see why some people just give up and don't want to pursue treatment any more. Not that I am there at all, but I just can see why after a few years that a cancer patient can get to that point. This trying to get well is exhausting, taxing on your body, and very well worth it!
So, now I will be posting again on the 16th after I get the results.
I hope everyone's day has been smoother than mine. In fact, I hope you have had an excellent day!!!
Still trusting the Lord. I can do all things, through Christ, who strengthens me. Thank you Lord, for this promise. Please help me to remember it in all situations.
Keep your chin up, Everyone.
Love to all,
Jean
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