Saturday, August 16, 2014

Good news and More bad news

Praise the Lord!  The blood tests show that there is no more multiple myeloma.  The prayers and the transplant worked.

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.

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.


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

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.

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.

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,

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. 

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

Love to all,

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.