I am finished with chemo for now. Met with my transplant team twice this week. Started the workup yesterday (Friday 9th). They drew about a 55 gallon drum of blood from me. Met with financial counselor, insurance person, RN, and MD. I was supposed to have an echo (heart test), but the machine broke down.
I’m going to recap the next few weeks as best I understand it. I am going to receive an autologous transplant (my own cells). Transplant doc feels it is best first choice. The RN gave me a written calendar of events for the next 30 days.
The pre-transplant work up consists of such items as echo, pet scan, ct, blood work, and who knows what else the next week or so. Then I’ll go into 4 days of injections (neupagen) to cause my bone marrow to crank out lots of shiny brand new baby stem cells. Then 2 days of harvesting the stem cells.
My “calendar” they gave me with dates and times says to carry Immodium with me everywhere I go at this point. Great.
After that, as soon as Carter blood care has enough blood and platelets matched and on hold for me, then they will start “BEAM -7,” a seven day count down. Day 7 down through day 1 will be intense chemo to basically wipe out as many white blood cells (and others) as they can. Consequently, they will transfuse a lot of blood products to keep me boosted up. Kill cells on one hand, replace them on the other hand. The hopes are that the defective white blood cells will be the greatest casualty in the process.
The RN stated the first few days of BEAM chemo aren’t too bad.
Either 6 or 7 days of BEAM, then 1 day of rest + IV fluids. On day “Zero,” they will infuse my previously harvested stem cells back into me. They told by this point I will feel miserable.
Then begins a 14 day count toward discharge. Manage any problems, and pending no serious complications, go home on day 14.
I was cautioned that “go home” doesn’t equate with “feel good.” I was told to be prepared to feel about as bad as one can imagine on discharge.
Then comes a slow recovery at home of approx 3 months before I can return to work, depending on the speed of recovery.
That’s the autologous stem cell transplant process as best I understand it.
This last week has been rough. Fevers, sweats, high blood sugars (picture in the 300’s and one in the 400’s), weak, tired, achy, just generally feeling miserable. My mouth got dry around Wednesday night, everything just sticking to everything. I sipped on ice water. My tongue at one point during a nap stuck to my left teeth thoroughly enough that when I woke up and tried to take a drink of water, some of my tongue stayed on my teeth. Want to talk about a serious ulcer right now on my tongue? Not a fun deal.
Received antibiotics and blood yesterday.
My bottom has also been hurting something fierce. Having a bowel movement is extremely painful, like over the top. Doc told me yesterday he might have to get surgeons involved if it doesn’t start improving. This would delay the transplant a bit. Evidently, I have some kind of erosion or fissure or something. Not recommended for a weekend of joy.
I wish I could say I was Mr upbeat, but I’m not. Feeling rather down. I’m already tired, weak, and ready for this to be over with but the worst has to come.
Looking forward to visiting with family this weekend, stepsister is coming up for a visit. Family has a way of lifting spirits.
Walking Through This Together 
Glad I got to see you. I know you are miserable with only even greater misery coming in the next few weeks. But try not to lose sight of the goal. Prayers going your way. brenda
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Thank you Brenda. We enjoyed your visit, thanks for all you have done. You have made a huge difference!
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Robert,
Please know you and your family are in my prayers. Please wrap yourself in the love of the prayer shawl I gave and know many are praying for you everyday.
Stephanie
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Thanks Stephanie!
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I know you are BEYOND miserable at this point but you know what…you are getting your Stem Cell Transplant! There were days, not so long ago, when this seemed so far away and you wondered if it would ever come. I can’t even begin to imagine how your body and spirit feel at this point. Keep that chin up and know that there are some bad days ahead but that your faith, family, and friends will see you through. LIFE, my friend, is what lies ahead…past all the icky feeling, sticky tongue, Imodium carrying, possible fissure pain, chemo, blood / platelet transfusion filled days…are more days that you will be healthy and happy…and above all, living! (((Hugs)))
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Thanks Brandi. You are correct, keeping my long term vision on the final result: return to work. I just need to get to that point now…
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I’ll be praying these next few weeks for superhuman strength and patience for you (along with prayers for your comfort and healing!).
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Thank you!
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Robert keep the faith, uou are going thru a rough time but I have faith you will beat this, love you guy. Joyce
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Thanks so much Joyce.
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Robert, very best wishes, love and many prayers from Downunder for what is ahead of you. You are a very strong person to go through this. I wish Janice and your girls and extended family courage as “they walk through this with you”. Will be thinking of you. Lu Seymour Australia
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Thank you so much Lu!
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Robert
Know we have been out of touch, but I am thinking of you and your family. I know with your strength that you will beat this. I am praying for you!
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Means a lot to me Susan. You are such a fun person and have always been a great mentor and good person to work for. Might have to make a point to say hello to you next time I’m in South Texas.
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