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
Saturday, March 15, 2014
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
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