The BMT Experience

The following is a copy of the blog my wife kept during the first five years of her fight with Leukemia.  I did most of the writing but the words are hers along with a few embellishments for interest.  All that I wrote was with her approval.





The BMT Experience
My battle with
Acute Myeloid Leukemia


Prologue

It all started with a routine blood test on a visit to my Rheumatologist for my arthritis. On the way home I got a phone call from him saying that there was a very low reading of my white blood cell count and that I should go straight to the ER for a more detailed examination. He said that there was a possibility that I might have Leukemia. Well, needless to say my life seemed to shatter right before my eyes. I was devastated.  I was like, "How did I catch this? Should I have been more conscientious about my health?" etc. A month ago my blood work was completely normal. How could it go that bad THAT FAST? How was I able to catch a bug this bad? I was SCARED! My husband tried to reassure me that this is not something that one can "catch". It is more likely hereditary. But there are no incidents of anything like this in my family. It didn't make sense. Then I started wondering what I did to displease God that He did this to me. Gary immediately jumped on me and said that God does NOT do this to people. He loves us too much. He put us here and let us go. Whatever happens to us is simply in the course of nature. He would never intentionally make His Children sick. I was soothed, for a little while, at least.

We proceeded to our local hospital in St. Johns where our family doctor works and went straight to ER.  Evidently the other doctor called them because they were waiting for me.  They rushed me into a reserved exam room, did a fast blood draw then an ER staff member personally took the sample right down to the lab and waited for the results.  Too soon, seemingly, they came back.  The tests confirmed what the Rheumatologist had said.  There went my last hope of a misreading of the first test. 

The ER staff set up an immediate appointment with the local Oncologist and after reviewing the exam report sent me straight down to Sparrow Hospital in Lansing, Mi. for immediate admission. The following day they started chemotherapy and that lasted for a month. To add insult to injury, I lost all my hair. I knew this was normal but now it was happening to ME!  Some how that makes it all seem so different.  Know what I mean? During this month, in a consultation with my Oncologist, she revealed that the Leukemia was so far advanced the I might not have made it much more than a week. OH MY GOD!!! I almost died! And I wasn't even feeling sick. Only a lot of fatigue. The thought of leaving behind the worlds greatest husband, two great sons and a flock of sweet grandchildren almost put me in shock. I was in a daze for a while. I realized someone Upstairs was watching out for me so I decided that a lot more prayer would be most appropriate.

After about two weeks at home and going back to the local hospital for blood work every other day, they sent me back to Sparrow for another month. I got out of there on the fourth of July. After a couple months of fairly stable and easy living and regular visits to the Oncologist, it was decided that I should have a Bone Marrow Transplant. That was to be done at the Karmanos Cancer Institute in Detroit. The schedule was to be chemo for a week, then radiation followed immediately by the BMT. The rest is history as chronicled in my regular updates on this site.

The Journey begins.
Posted Nov 1, 2009 4:54pm
It is now day three of my Journey to wellness. It is also a battle between me and the enemy (Leukemia). It's goal is to take me out and mine is to tell it to go to Hell and suck sulfur and brimstone. I WILL be Victorious! If God is for me, what cancer can go against me and win? Get the picture? God is Awesome!!!
I was admitted on Oct. 29, 2009 and chemotherapy  was started the next day. It will continue until the 3rd of Nov. Wed., the 4th will be a day of rest and the next day they will give me radiation followed by the transplant itself. After that it will be wait and see.

So far I am feeling pretty good. Well, at least for the first two days. Not nearly like I felt with my other chemo sessions at Sparrow Hospital. But I do have occasional bouts of nausea and diarrhea but not too bad. Also some muscle weakness.

All the nurses here are very friendly and helpful. They make you actually feel loved! The bed is comfy and the food is... well, Hospital food, but a bit on the better side.

That's it for now, catch y'all on the next update.

...and on the seventh day she rested.
Posted Nov 4, 2009 10:27pm
Today is Wed. the 4th of Nov., my seventh day of incarceration here and on the schedule it says "Day of rest". The chemo is now over for a while and the living is easy. The nurses are jumpin' and my hopes are high. (Huh? Where'd that come from?) Anyway, tomorrow is "The Big Day". My brother, who, it turns out, is the only compatible donor out of all my brothers and sisters, will be here early in the morning for the blood draw process. They will remove the stem cells from his blood, bring them to me in a baggie and feed them into my IV rig. Then, it's over. Well, sort of. From there it will be hurry up and wait. On the 11th I start taking Nupogen injections (which my husband will administer). That helps build up my white blood count. When it reaches a sufficient level they will kick me to the street. (Think "Homeless Waif"... just kidding).

But it doesn't end there. They have to do frequent follow-ups to see how my system is responding. They are arranging for guest housing for 30 days for that for me and Gary. I honestly don't know where the money is going to come from for that because it will cost us $1960 for the month and they don't pay for it and it is not covered by insurance. I pray strongly that God will send us a Miracle. Or a Philanthropist in a generous mood!

Well, I guess that's all for now. Tune in again, same time, same station, different day for another episode of "The BMT Experience"
I'm in touch so you'll be in touch. Good night.

...and now, The BMT Experience!
Posted Nov 5, 2009 7:00pm
Sounds like a lead-in to something exciting, doesn't it?  Well, 'twern't nuttin' special. An anticlimax if anything. Eugene, my brother, went through way more of an ordeal than I did. They had a lot of trouble getting a good vein and they had to stab him numerous times. When they finally got him hooked up he had to lay there, flat on his back with his left arm strapped to a board for over six hours straight while they took blood out, extracted the stem cells then put the rest back in. After he was through he came up to visit before going home. He could barely use that arm. And he still had to drive 80 miles home.

After they finished processing the blood, they brought it to my room, hooked it up to my IV and we sat back and waited. When the bag was empty, 45 minutes later, everyone disappeared and that was that. Just me, peace and me Hubby. No hoopla, no busy-busy. It's over. I could have slept through it. After a final blood test they found out that the stem cell level was a bit too low. So now he has to come back tomorrow to give more blood. He has my sympathies, let me tell you. But make no mistake, he is a wonderful brother!

Well, it's late and I must rest. The sun is gone and so is my daily allotment of energy. Call or come up if you can, gonna be here for a while, yet.
This is Sherry, signing off till tomorrow.
Zzzzz-Zzzzz

The BMT Experience - Part Deux
Posted Nov 8, 2009 6:20pm
Nov. 7, 2009  Well, here we go again. DING! Round two. Eugene was here again bright and early this morning, strapped to a table having his veins invaded. It was better this time because they got him tapped quite easily, but he still had to lay there a long time although not as long as yesterday. A few hours later they brought the stuff to me and hooked it into my IV and I was good to go. Yeah, right! It would be really good if I could get up and go! Know what I mean? Anyway, yesterday's stem cell count was 2.99 and today's was 1.3 giving a total of 4.2. Quite good considering they were shooting for a 3.5! Now is more hurry up and wait. I am told that my blood count and the platelet count will drop some before they start coming back up so we'll be keeping an eye on that. I'm feeling fairly good except for occasional headaches and some fatigue. The road to full recovery will be long but with God on my side I will overcome! I WILL be Victorious! (The crowd is on their feet! Listen to the roar! My goodness. Listen, the Angels are singing!!!)

That's it for now, folks. Check back soon for another "exciting" episode of "The BMT Experience"

Evening News
Posted Nov 11, 2009 7:02pm
Good evening Americans, this is not Paul Harvey, but stand by for news anyway. The latest word from Karmanos Cancer Institute in Detroit, Sherry's still there, battling the evil Leukemia monster. She's holding her own and the monster is starting to back down, losing ground. Yay! The report says her blood numbers are about to hit rock bottom. That's good because then she can't go any lower; the only way to go is UP and rock is a good foundation on which to to build!. Tonight at 8:00 she starts getting Nupogen injections which is supposed to make her bone marrow kick in and start making white blood cells. White! As in the Light of the Lord which is going to send that monster packing with his tail twixt his legs. Sayonara, foo'! With a little luck and a whole lot of prayers from y'all, we be winnin'!

Just a short report, tonight, I'm getting quite sleepy so I'll see y'all later.
Tata

Not the last update...
Posted Nov 20, 2009 2:02pm
Hi everyone, I guess it's time for an update since I haven't posted since the 11th and they're cutting me loose today. Things are going really well at this point and I'm feeling much better. My whole blood count has risen from 0.5 to 9.5 and the platelet count from 20 to 152, all since the 15th. These are the numbers that tell them what is going on with my bone marrow and are the most important ones to watch. Everyone here is amazed at how fast the recovery is going. Ya know, Gary and I were discussing this just last night and we came to realize why this has happened. There are several factors involved. First of all, we have stuck close to the Native American culture and beliefs of our ancestors, we totally love and support each other, we have placed our lives completely in God's hands and we have trusted in our Angels. All this has come together to produce the healing that I am now experiencing. This we believe with all our hearts! God is AWESOME!

Gotta go for now, getting lots of Drs. and nurses streaming in and out of here. The updates will continue from where we'll be staying for a while. Thank you for all the kind words and prayers you have posted. It means a lot to me.
Love you all,
Sherry
P.S. I should be getting out about three-ish.

...and the recovery begins.
Posted Nov 23, 2009 4:11am
This is going to be the longest road yet. But I'm going to travel it slow and leisurely. That's the way it's going to go anyway so why be in a rush. Right? I have totally placed my life in God's hands so I'm going to heal at His rate. Whatever He determines is OK with me.
I am currently staying at the house of a long time friend with my husband and we are comfortable here and are very grateful for his kind hospitality. But make no mistake, we SO long for our own bed and surroundings. Well, it has been said that "There's no place like home." (Think Ruby Slippers and clicking the heels three times...)

Can't seem to get rid of hospital-like atmosphere, though, because I still get fed Magnesium by IV once a day which Gary administers. It's a whole quart (well, liter) and it takes four hours. Not too much fun but after that I'm free to pursue other things. But if I go out side, especially near a lot of people, (think Wal*Mart) I have to wear an isolation mask to help reduce the the risk of getting an infection or something worse that my immune system can't fight right now. I don't think I could go out in public like that. People will probably think I'm going to rob the store and call 911 or that I have H1N1 and would avoid me like the plague. Just kidding! (Mostly) The IV thing is supposed to last for seven days starting last Friday so the last one will be this coming Thursday. After that, I don't know. I'll let you know.

That's all I can think of right now. If I remember something I'll come back and edit this or I will put it in the next post. Thanks to all out there who have left notes and prayers. Your support means a lot to me. They help in my recovery.
Talk to you all later,
Sherry

...and the beat goes on.
Posted Nov 29, 2009 11:04am
I am just starting my second week of "freedom" and the Magnesium IVs are continuing, "Until further notice", they tell me. My blood counts are continuing to settle out, however, and that's a good thing. Eventually everything will be good enough that I can actually go home with only occasional visits to the Doctor's office but for now, I will remain under close doctor's care at least through the first of the year. Right now my only option is to hurry up and wait.

What a cool deal! I actually got to come home for Thanksgiving weekend. And this year I have more to be thankful for than ever before. Know what I mean? I still can't be around a lot of people so my youngest son, Paul, and his wife brought a couple plates full of food from their dinner for me and my husband. I really miss my four grandsons, though.

Now that I have all this free time I tend to sit back and reminisce, to review all that I've just been through. I thank my lucky stars that it turned out as good as it did, although, truthfully, I don't believe that luck had anything to do with it. I believe that it was no accident that a lab technician by the name of Sandy happened to notice the abnormal blood counts. I believe an Angel told her to look more closely and now I owe Sandy, and that Angel, my life.

You know, when you are very close to death and you make it all the way back, it tends to give you a new outlook on life. You realize how precious every moment is and how easily and suddenly it can be taken away. Then you want to do more with your life, to make it stand for something more than just a ho-hum existence. I know without a doubt that totally placing my life in God's hands was the best thing I could have ever done. I don't know yet what lies ahead for me but I know deep in my heart that God will lead me to something wonderful.

Possibly the last update
Posted Dec 2, 2009 4:28am
Not much is happening now to write about. Everything is on a steady cruise and it's just a matter of getting all the numbers in the right place. They're slowly settling out and as soon as my Dr. visits get down to once a week I will probably be going home and doing the visits from there. Whenever that happens these will stop and you can just call me at home. You can still call on my cell phone, though.
Talk to y'all later,
Sherry

Epilogue

Yes, this is the last update
Nov. 2014
It is now just past the fifth anniversary of my diagnosis of Leukemia and the battle continues along with a couple more adversaries with which I must deal.  The road has been long and arduous and I am beginning to think that there is no end except when I go Home.  Still, I persevere, I pray that the Lord is leading me where I need to go and that one day I will be well again. 

This will sound strange to the reader but Leukemia is one disease where another is prayed for to go along with it!  Graft Versus Host Disease (GVHD) is a disease that attacks the Leukemia and makes it go away.  It destroys the cancerous white blood cells and allows the bone marrow to make only good ones.  GVH can attack any part of the body but in my case in settled in my lungs.  Consequently it makes it very hard for me to get sufficient oxygen into my system.  I now have to be on oxygen 24/7 and sometimes I still find it hard to breath, especially if the room temperature gets too high.  Also, the GVH makes me highly susceptible to lung infections.  The bad thing is that if I get a mold infection it will be the end of the line for me.  THEREIS NO CURE!

Believe it or not, I am good with that.  I am not afraid of dying because I know I will be going to a better place with the Lord.  I will have no pain or discomfort.  I will be warm and happy.  I will be eternally 35 years old.  And I will be with all my past family and friends.  Somewhere along the way I just might run into some of my past four-legged kids as well!  What can there be to fear in that?  I will also be quite sad because I would like to be here to see my grand children grow up and to see that everything goes well for my son, Paul, and his new fiance.  Yeah, I know, I will be able to watch from Heaven, but it's not quite the same as being here to participate physically.  I love my family dearly, more than life itself and I want to be a physical part of their life as long as possible.

For now I will keep on keeping on.  It's all I can do.  “The Lord is my shepherd, I shall not want...”  The Apostle Paul nailed it when he said, “I have learned to be happy with what I have...” (Philippians 4:11)  So, over all, even with all my ailments, I am happy with what I have because I have a family that loves and supports me all the way.  What more could anyone ask for?

Author's note. 
    I was astonished by the spiritual strength of this woman.  When she first got the bad news I actually thought she might go into depression or something close.  She was totally devastated.  And then one day, she told me, she woke up with a new attitude.  She was bound and determined to beat this and keep her head held high while doing so.  She also told me that from the moment that she got to Sparrow Hospital that she felt Angels all around her and one of those, I am certain, was her Spirit Guide, Maria.  The battle goes on but she is doing well.  God truly is AWESOME!