Dancin' in the Rain

My doctor’s appointment the day we got home from my clinic visit last night was 10 AM.  It seemed a little early, bt I knew I could catch up on rest later.  So off we drove.

Lab work, wait for results.  Physicians assistant Kelly went over results and did a mini exam.  Then she went to get Dr. Finn ( Petersen).  He’s one of my doctors, but is also the director of the program.

So, He liked my results and had a partial bone marrow evaluation to share with me.  I AM DISEASE FREE!  There is no sign of any dysplasia or abnormal cells at all.  It means my donor specimen is doing what it is supposed to do…fight my bad cells! He said I look good and my bone marrow looks good!!

There could never have been nicer words to hear.  I still will learn the DNA studies next week, but the percentages aren’t important related to the fact that the transplant is working.

Prayers and love and support from all of you has helped this process.  Heavenly Father hears and listens, and if it is his will, he will answer.  He has answered!

It’s not what you imagine.  That temperature thing I had going since Saturday finally reached 100.4 F and I called the clinic.  I was instructed to go directly to 8th East where the bone marrow transplant ward is.

Now they told me, since I ‘only’ had a borderline temperature, no other symptoms, they would probably take blood cultures, blood work consult with the PA and doctor and let me go home.  I tried to make sure that happened by eating a piece of cheese cake a friend brought over.  If I didn’t eat it, it would have been left for Peter and he had his own.

They put me in a room, just in case they had to admit me.  It was spacious enough, but the bed and chairs were harder then I remembered and I prayed mightily not to have to stay.  Peter and I rotated clockwise from the bed to 2 chairs to try to get comfortable.  :(

Lab work was the same as Monday, no sign of infection there.  But, my doctor decided I should get a IV antibiotic anyway.  11:45 PM.  It took an hour for the pharmacy to mix my drugs and another hour for the infusion.  12:45 AM. Peter finally got comfortable as possible on the bed and I wiggled around from chair to chair.   Infusion started at 12:45 and I tried not to watch he clock.  Ever been so tired you couldn’t sleep? That’s where I was then.  I closed my eyes and it helped and the hour passed.  Monika came in, disconnected me, and out the door we ran, never looking back.  It was just before 1 AM.

Well, I was dancing under the stars as we walked to the car, prime parking that hour of the night!  Yippee. I got to go home.  The unique part of the situation was that I had an appointment that same day ( since it was after midnight) and I was trying to get my temperature to stay low till then.  No way.

We were home by 1:30 AM.  I just got into bed.  Had to get out of street clothes hours later when I was too warm.  Up for meds at 6 AM and 8 AM to get ready for doctor’s appointment!  That’s my next blog.

Good news, I am still home. Not so good news is my body is trying to run a fever.

I’ve had a very slight fever according to mother’s standards, which is usually not significant.  It’s been bouncing between 99.1 to 100.0 since Saturday at least, with a few normal numbers scattered in between.  I have to go to the hospital when it reaches 100.4 and ” plan to stay a few days”

That means blood cultures, bring the fever down and wait for blood cultures to grow nothing.  It’s common and usually happens to every transplant patient.

Usually it is just the graft vs host process.  So, I drink lots, keep tabs on my temp and pray it will get back to normal, soon.

In the meantime, I am packed with a couple days things with directions for bringing the rest as needed.

It will definitely be better to be there and monitored, if necessary.  So, no more news on this account means I fought it and won!

I was told in high school never to use the word you are defining in the definition. Got graded down for it.  Makes sense.  How could you know what it is if you have no idea what it is using the same word.  That’s my support of teachers teaching lessons well.

Chimerism is the process of combining 2 specimens, in my case stem cells, into one patient.  This is the result we await for 10 days since my latest bone marrow biopsy.  It happens in stages.  The ideal situation is 25 % engraftment after 2 weeks, 50% after 4 weeks, 75% after 6 weeks and 100% after 8 weeks or 2 months.  Engraftment is the donor cells taking over my cells in periods of time. The testing is done via previous DNA fingerprinting of my cells and my donor and they determine percentages from that. I am in awe of modern medical technology.

That doesn’t mean my transplant adaptation is done.  Then the new cells and antibodies it produces has to enter and replace all my old antibodies in all my tissues and organs.  Could be getting rashes, abdominal distress and an endless list of side effects.

Besides it taking over my body, the donor, through chimerism,  will also seek and kill andy blasts that may be lurking in the back alleys and by ways of my body.  WOW! 

Now, when I say the word chimerism, the word sounds like, but isn’t , similar to Chameleon.  Pretend I am the brightly colored animal as it tries to hide in the leaves from it’s predators.  They predator leaves and I go to my natural habitat and turn, maybe , nataural green-brown.  Or visa versa. I don’t know the original color, but I change.

In my transplant process, the donor is hiding out, reproducing cells, until it is strong enough to take over the host and become it’s natural self.  Confusing?  It’s amazing, actually.

So, that’s where I am. Waiting another 9 days ( weekends don’t count, I think.)

I’m feeling better.  They have had to decrease my cyclosporin which causes fatigues as a normal part of the process  And I go to the doctor just 2 times per week.  All an improvement in my life.

Chimerism visualization

It has been 28 days since my bone marrow transplant.  A little nausea, much fatigue, moderate pain in the legs, sitting and resting in chairs that feel like stone are the major side effects I experienced.

So, today I had my 28 day diagnostic bone marrow biopsy and blood tests.  My blood and my donor’s blood have been DNA fingerprinted.  This information will be used to identify the percentage of my original leftover blood cells in bone marrow and peripheral blood and what percentage belongs to my new blood. They are hoping for 40 – 50% split.   The process is called chimerism and I will try to explain it better another time.  It is incredible high technology for tracking 2 different sources  of blood, in this case.

I dropped to 2 visits to hospital per week and changed 2 meds.  Hopefully the fatigue and leg pain will decrease.

It takes 10 days for complete studies to return.  So, I have plenty of time to think positive and keep moving forward.  Thankfully, the sun is shining more, and that helps.  It takes lots of prayers and smiles to leave the process in the hands of the Lord.  That is where I get my peace.

My blood cell counts are improving daily.  We just don’t know if the cells are my cells recovering ( boo) or if they are my wonderful donor cells ( yea).

I do know that the cyclosporin has fatigued me to tears and is the cause of my morning nausea.  That makes life more understandable, but not much more tolerable.  That’s not true, I am forced to rest and rest and rest.

I barely have enough energy to fart and I say that in a kind way because my dear friends, Don and Cindie, remind me I will return to the days of being a fart on a hot skillet. ( their loving way to describe my exuberance for activity).

On Wednesday, May 19, 28 days since the stem cell transplant, I will be tested inside and out for my donor versus host activity.   Let’s all cheer for the donor cells!  They will then decrease my cyclosporin, so less fatigue and nausea I hope and decrease  office visits to 2 or 1 day a week.   I can handle all that easily.  I am so fortunate I have no other symptoms, yet, related to graft versus host disease.  I have to watch out at least  to day 100.

This is my paradise for now.

This is my favorite place right now.  My lilacs are in bloom.  Smell them? There is a light breeze with the birds twittering and flying from tree to tree. Paradise.

I had a good report from the doctors on Wednesday.  Platelets still rising, Rbcs stable and Wbcs low but stable.

The extreme fatigue I am having may be contributed by the cyclosporin, my primary anti rejection medicine.  So, last night I went to bed early to see if that would help.

So this is all there is for now.  I hope to  sleep in on Thursday.

Bob the Builder

Drink lots of fluids, preferably 3 quarts a day, the doctor says. That’ll flush the bad chemicals out of my body. OK, I can do that.

I don’t drink a lot of juice. I prefer to eat the fruit, but  I drink milk, I drink herbal teas,and lemonade. That’s not enough.  My creatinine is slightly raised and sodium down because I am drinking too much water.  Now I know this is because of all the drug’s I’m on.  But, it’s gotta be fixed.

I stopped at Whole Foods and perused all the drink isles and additives that may help.  At least I know that no artificial preservatives exist in them.  I found 5 different Odwalla drinks higher in sodium, 3 powder mixes to add to water and 2 water beverages. I shall add a little more salt to my foods.  That’ll help me retain fluids!   I will try these and see if they help when I get my blood drawn on Friday.

Well, to quote Bob the Builder : “I can do that.”

tick-tock clock

Time for more blood work. Monday, Wednesday, and Friday are my special days. I still have a catheter in my chest wall, so it is a simple process.

Great news.  My platelets are still increasing, from 55 on Friday to 97 today, Monday.  Yippee.  Rbc’s stable but low, but no transfusions yet.  They would be the next cell to respond to the bone marrow transplant. Good old Wbc’s are dropping as expected.  I am in the neutropenic  range, my total neutrophil count is 500.

That was my magic number to get out of the hospital the end of March. That number means I wear my mask all the time I am out and there are people around. I’ll be susceptible to infections and take my antibiotics faithfully.  I’ll be safer when they start going up and get over 1.0.

So, I’m improving.  It has been almost 3 weeks since the transplant and numbers look really good, so far. Next week tells the real story with in depth tests.  I’m happy with the progress so far.

Well, news is getting better.  My platelets are slowly rising and it could be positive growth of the donor cells.  Now, the doctors warn me they could drop a little before rising again, so I think I’m ready for anything. ( ha-ha.)

Wbc’s and Rbc’s still dropping.  Wbc’s, the cells to protect me from infection, are the last to recover.  So, next I look for increased Rbc’s.  I am quite fatigued some days  and it could be my low Rbc’s.  I’m checked 3 times a week for change in drugs and CBC, so the docs will catch and fix whatever I need quite rapidly.  No transfusions needed yet.

Big evaluative tests are on May 19th, but will take several days to get the results. That will be when they can tell my what percentage of my cells belong to my donor and what percentage are my diehard cells waiting to be told to go away.  ( Thanks ,Kerstin for that insight.) Some fun things happening there I will report later.

For the time being, I “Don’t Worry” ( or try not to ) and I “Be Happy.”  Love ya.

P.S. Eva, do you have a dance connection with this blog?  I love the beat of the reggae music, but can’t get a dance routine out of it!  You are my insightful friend!! Help me out!! Love you.