Day +66

Its been a hectic week of clinical visits, procedures, blood draws, you name it. 

Ultrasound today confirmed a diagnosis for the horrible, bloated belly.  Its "ascites", the fluid buildup outside the organs in the surrounding tissue.  They've got me on a special med (specialized diuretic), but they are going to schedule a procedure to remove the fluid.  They are literally going to lay me down, poke a hole in my abdomen, insert a catheter, and drain the fluid out.  They say it will bring instant relief, and I'll leave the procedure with an abdomen that looks pretty much normal without any fluid.

I'm impatient, so I can't wait for the procedure (even though I will be awake through it).  Heck I'll bite a stick if they want me to.  Just get this fluid out of me.  In the meantime, I continue to take the medicine.

The imunoglobulin infusion is scheduled for Thursday, so we'll see how that goes.

I just wanted to drop a few updates today.  Everything remains unchanged.  I'm just taking it as it comes. 

Day +65

Had a clinical visit at City of Hope today.  Great news!  ALL of my markers for complete graft came out at 100% again (a couple more markers showed 100% even from last testing). 

There were a few issues with my regular lab work from today.  My platelets are continually coming down (not good), white counts were low (again), and a couple other markers were troublesome.  Good news on that is it's medicine related.  My bone marrow is working perfectly.  It's producing everything it's supposed to, but the medicines are still chewing up the cells.  So they discontinued a medicine, adjusted others.  I expect by my next clinical appointment on Thursday that my numbers will be going back up again.

I'm still weak, so standing from a sitting position is very difficult.  Also, climbing my stairs at home has become almost an impossible task.  I can't wait until these medicines flush completely out of my system.  I'll start feeling human again.

My belly looks like I'm eight months pregnant, and it's hard as a rock.  I have a scan scheduled for this week to see if the abdomen is swollen from GVHD or if there is a fluid buildup outside my organs in my stomach and intestines.  In the meantime, the doctor has given me a specialized diuretic that is supposed to clear the fluid if that is what it is. 

He didn't want to wait for the imaging test results, so he started me on them today.  I started taking the specialized diuretic today, and I can actually feel it working physically.  So I think the scan is only going to confirm that I have fluid buildup outside the organs.  If that's the case, I'm finally going to have relief from this bloated, painful belly.

I got a call today from City of Hope that I need an infusion of imunoglobulin.  It's a crucial part of fighting bacterial infections in your system.  My levels on that were low today apparently, so I'm going in for infusion this week.

In any case, each day brings its own challenges.  I have to take this one day at a time (not easy for me).  I should be out of the woods with this chapter pretty soon.

Day +61

Well here we are at day +61.  Recent days are really presenting new challenges.  Post transplant comes with a dizzying quantity of prescription medicines.   I'm currently managing over 20 different prescriptions multiple times throughout the day on an almost unmanageable schedule.

I've been experiencing a gradually increasing fatigue in my muscles (upper thighs especially).  My strength has been weakening, and I can't sleep at night.  I've been getting about three hours a night for quite some time.  Sleeping pills haven't been working.

Hopefully that is all beginning to change as of today.

I fell at the top of my stairs last night.  I hard to crawl to my bedroom and onto my bed to get up.  I had planned on reporting that at my clinical visit today.  But it turns out I had more to report than I expected.

When we got to the City of Hope, Corless dropped me off at the front door area.  I got out of the car and stepped up a curb.  When I did, my thigh muscled gave out, and I took a nasty fall onto the sidewalk.  Corless and a nurse tried to lift me into a wheelchair,  but they couldn't lift me all the way.  A big man showed up and lifted me into the chair.

Once I was wheeled to the clinical area,  it was able to get out of the wheelchair and resume normal walking.

I reported all of this at clinical (including the cuts on my knee - which they treated).  So the doctor finally discontinued four medicines and cut back a couple more.  Thus medicines where doing more harm and the balance between benefit and detriments had finally swung too far.  I can't be falling down and not sleeping and enduring ever increasing fatigue.  Besides, the medicines were chewing up my platelets, white cells and a good deal of my blood markers.  So those numbers are supposed to improve.

Overall, it comes to a balancing act between anti rejection drugs, GVHD drugs, drugs to help improve post transplant recovery, and the ultimate benefits.  Managing the drugs and the effects on my recovery are challenging, but ultimately I am constantly improving.   Some days I have more challenges, but I know I've come such a long way in a relatively short time (61 days).

So I thank God for every day, because I know this is all leading back to a normal life.  It's a long slow recovery,  but at the end of this road is a normal, long, healthy and happy future.

Day +53

Today is day 53. I had another bone marrow biopsy yesterday. It’s my 12th one. After the first one, I swore I'd never let them do that to me again. I have another clinical visit tomorrow.

What was nice about the bone marrow biopsy this time was that they actually put me completely unconscious for the procedure. I had always previously been completely awake for the entire thing, and let me tell you it is the most excruciating thing imaginable, even with the iv pain medication and the local anesthetics.
The last time my doctor at City of Hope did the last biopsy, he promised me he'd never put me through that again. True to his word, he didn't.

Funny story about the biopsy: When we started, they needed me to roll over onto my stomach, because they pull the biopsy from the back of the pelvis, just above your rear end. The way the doctor asked me to roll over was hilarious. She said "I need you to roll over sunny side up for me". I started laughing, and of course I chimed in. I said "You mean moons over my hammy"? Of course they started laughing, and the entire thing got out of control with the euphemisms. So it started out fun, which was great.

Because it was a procedure where they put me out, they had to do it in a special O.R. type section of the hospital with an anesthesiologist etc. The anesthesiologist was pushing the unconscious medication into my pic line, and he said "You have about 10 seconds. Start counting from 10.” So I started counting. I don't think I made it to 4. Then I started complaining that I just couldn't go out, and I asked him to give me more. They all started laughing, and the doctor that did the procedure said "Sweet you're done. I need you to roll over onto your back. You are in recovery."

Wow, that was fantastic. I don't remember a thing. I didn't feel a thing And with the pain medication they put into me in recovery, I never felt any pain afterward. I can't believe I ever endured the other 11 biopsies.
We're supposed to go over the results of the bone marrow biopsy tomorrow. Bone marrow biopsy after transplant is a milestone. They are looking for any anomalies such as immature cells, mutated cells, cells that don't look like their acting right and make sure the new transplant is producing enough fresh, life sustaining blood and marrow to crowd out all the old fibrous tissue that had formed during the myelofibrosis.

I'm completely cured by the bone marrow transplant. I don't have myelofibrosis anymore. They just use the bone marrow biopsy as the test that everything is truly going as expected.

So I'm expecting another good report tomorrow. I'll update to let everyone know how it went.

Approaching Day +50

Sunday will be day +50 of 100 days.  I'm almost half way to taking off my masks and eating an unrestricted diet.  Day 100 is also the day the City of Hope starts scaling back my clinical visits, so I won't have to travel so far so often.  Day 100 is a true milestone, so I'm excited to be half way.

I want to take this time to get some information out to everyone and express how truly important it is that you give it some serious consideration.  It saved my life.

I'm surprised how many bone marrow donors are out there that I run into in my daily life and wouldn't even know it.  My pharmacist is a donor -  a neighbor, a friend, a cousin, check out clerk.  I'm continually surprised.  (it comes up because I'm wearing a mask and rubber gloves everywhere - people ask)  Two of my dear friends became donors because of my journey.

I also learned recently that a friend's cousin who is Japanese had a donor who flew in from Japan, gave the donation and flew back to Japan.  Amazing - makes me emotional.

Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible. They depend on people like you. You have the power to save a life. Take the first step today.

If you want to consider registering with the National Bone Marrow Donor Program, here is the information:

http://www.marrow.org/ - click on the "Join the Registry" tab.

Take the first step to saving a life.

Day +41

Day +41 and more good news!  The results of my recent DNA testing are in, and the DNA in my bone marrow and circulating blood stream is 100% donor.  There is no more Richard in the bone marrow or circulating blood.  What that means is the transplant has taken 100% - HALLELUJAH!

My normal DNA is still the same.  My personal DNA in my body hasn't changed, and it shouldn't.  But the transplant has fully grafted.  100% success!

The rest of my numbers all look good again.  Some of them are holding, and some of them are increasing.  I look forward to the coming weeks as I get better and better.

Day +100 here I come.  (that's the day they consider you out of the woods and clinical visits scale back and they just monitor every few weeks until they completely release you to have a great healthy rest of your life.

It was truly the best news I've had in a long time, and I'm so blessed and so grateful!

I'll see you all soon!

Day +38

Well, I'm 38 days into recovery after the bone marrow transplant, and everything is going remarkably.  I had my second clinical visit yesterday at the City of Hope.  Everything is going in the right direction.  In fact, my white counts are in the normal range (low to mid, but NORMAL).  My platelets are NORMAL.  My hemoglobin (red cells) are NORMAL range (low, but NORMAL).  All the other markers they look for in the blood (about 70 different ones) are all in a good place.  There are no signs or indications in any tests so far that there are any cancer cells anywhere or any abnormal cells that may manifest into cancer cells at any later date. 

The graft has taken, and everything is going in the right direction.  The donor cells have completely taken over, and there is very little, if any of me left in there.  My new blood type went from B+ to A+ (weird), so that's been causing some minor complications and impeding the progress of the development of the red blood cells and such.  But that's all transient, and will resolve itself over the next few months and just become normal.

I am experiencing some Acute Graft to Host Disease (GVHD) - definition: the donor cells recognizing my own body as foreign and creating an immune attack on me.  My stomach and intestines are still swollen, but I'm taking meds for that, and it should resolve itself over the next few months.  The only thing that is actually irritating me at the moment is that I have a very swollen, bloated belly like a pregnant woman.  The only other complication of the is a recurring rash with itching all over my upper body (shoulders, chest back and arms).  I'm taking meds for that too and treating the itching with creams and powders, and that too will resolve itself over the next few months.

So as I recover, I've been told that the "Acute" GVHD is what they want. 

There are two types of GVHD.  One is known as "Acute", and the symptoms appear immediately.  It's the physical response of the transplant creating an immune response to my body as foreign and needing to be dealt with.  Early GVHD is a good sign that the graft has taken and is trying to deal with the new environment.  Acute GVHD is the one that resolves after a few months, and there are no future problems.

The other type of GVHD is "Chronic".  That is when the immune responses start later and never goes away.  Chronic GVHD has to be dealt with for life.  Chronic involves things like skin problems, liver trouble, chronic intestinal issues or other conditions you don't want to deal with for life. 

So the acute stuff I'm dealing with is in the category of the standard stuff they expect and deal with.  And in the end, the acute stuff resolves itself in a few months, and I'll never look back.

I also found out that my donor was a local 42 year old male!  I couldn't believe it.  The chances of that were impossible!  As you can imagine, finding a donor match after my brother Cory (the best possible donor) was not a match, was prospectively not possible.  But for me, not only was it possible to find this donor, the donor was my age, my gender, my heritage (Italian Irish etc), my exact immune match (HLA - human leukocyte antigen), nearly my exact chromosome match and my exact match in most of the DNA markers they look for.  And they found the donor so fast, it was unheard of.  Timing was perfect, and so was the donor.  Do you realize how impossible that is!!!! ?

When I say the timing was perfect, I mean that if they didn't find the donor when they did, I wouldn't be typing this now.  I was out of time, and I would have been gone by today.  I had really no more marrow left in my body to produce enough life sustaining blood to keep me alive, and I was making more and more frequent emergency trips to the ER, clinging to life.  Each emergency trip was worse that any before it.

In fact, the last trip to the ER (when I was losing all that blood - 32 hours of transfusions etc.), I was actually not expected to make it.  I remember talking with one of the doctors that was going to perform a procedure, and I could physically see the fear on his face.  He told me I had put him in a position that he never wanted to be in.  He said it was going to be possible I wouldn't survive the procedure, so he was in the position of either successfully performing the procedure - from which I could die in short order.  Or I would not survive the procedure, and he would be in the position of standing over my dead body.

He said he had to tell me all this for the sake of disclosure, but it was very difficult to deal with.  But you know what?  I signed the papers and said "do it".  At that point, I had been up against so many of these "this is it, you may not survive" situations that I didn't care.  If I did nothing, I'd be dead within a few days.  If I had the procedure, I may live (even if it did put him in a difficult position).

Well you all know how that worked out THANK GOD!

For two years I've been passing through this furnace.  It should have destroyed me, and I should be dead now.  But hallelujah I've passed through.  I'm at the back door, and I can feel the cool air on my skin.  The sunlight is shining, and I can feel it on my skin.  I can smell the breeze, and it's wonderful.  I don't smell the ashes anymore, and I'm about to step through the door and shut it behind me forever...