The week that moves me ahead or slows me down …


It’s a rainy day.  I don’t know what I want for breakfast or lunch so I don’t make lunch, leave early for McDonald’s, then find no traffic and get to Loyola earlier than normal.  I get my blood drawn, quickly get the results, find I need blood with my Hgb at 7.  Surprised since I don’t feel it.  I usually can tell when the Hgb drops this low.   At 9:00 A.M. I hop onto the shuttle to go to outpatient and get in to see Dr. Clark, the infectious disease doctor, without any waiting.  She’s okay with me going forward with the stem cell transplant.   It makes me feel elated.

Finally, some good news.   I go back to High Dose.  The blood shows up quick.  That’s rare.

I also talk to Dr. Tsai about the CT scan results and Dr. Clark’s okay.  Now we need to wait for pulmonary.  The approval from infections disease is significant and Dr. Tsai orders a test for antibodies.  The original test for antibodies back in December is useless because of the numerous transfusions I received which might have added additional antibodies.   Dr. Tsai is also concerned with my struggling to walk .3 mile, but then, I’m working on it hoping to bring the distance up.  She ordered x-rays on my hips.   What will it show?   I’ll find out later.  I know I have arthritis in the left hip.   The insurance company won’t cover in-home or outpatient physical therapy to evaluate my painful-walking issues.   I’m a little nervous about seeing pulmonary tomorrow and what they will say, but it’s only a one day wait.


Bad start to the day.  First, I did something during the night that got my side hurting, somewhere between my ribs and hips.  Taking a deep breath was painful and pressing into an area near the ribs was painful.   I had an unexpected coughing episode while I was sleeping on my left side and think I might have jabbed my elbow into the side or pulled something.  I don’t really know.  Then, after drinking coffee this morning, I felt quite nauseous.   I took a Compazine and went grocery shopping at Mariano’s with Cyndi.  The queasiness was still there when we got home.  Some buttered toast seemed to take care of the problem.  It didn’t take care of my aching side, which felt worse.   We decided to let Cyndi do the driving to the doctor today.

Besides my aching side, the aggravation of waiting 1 ½ hours to see the pulmonary doctor, Dr. Patel, made the pain worse and me, more miserable and cranky.  I know Cyndi was tired of sitting and waiting as well.  There really is no good excuse for such a long wait.  The doctor was very apologetic about the delay and her reasons for being late were somewhat acceptable, understandable, but the staff should have communicated the delay with patients.   I did tell her that.  It would have made the wait less miserable.

Good news.  Bad news.   The CT scan showed significant improvement and Dr. Patel has no objection to allowing the transplant.  There is still some crud in the lungs, but it looks to be well on its way of going away.  To make sure the fungal infection doesn’t come back, I will have to keep on the anti-fungal drug Voriconazole for a long time, possibly through the transplant and for some time after.

Now, for the side pain.  Dr. Patel thought it potentially could be spleen damage.   Not being sure, she wanted to order a CT scan.   They couldn’t get it scheduled right away in the outpatient center so the alternative was to go through the ER to get an immediate scan.  After talking to Dr. Tsai, it was decided that a scan wasn’t necessary so no need to go to the ER.  Physically, I looked okay and the vitals were good.  They decided to let me go home and if anything were to get worse, trust me to get to the ER asap.  That was fine with me.


 I slept good last night.  My side pain is vastly improved.  I still have some difficulty taking a really deep breath and have some tenderness.   I don’t think it will get worse.  Now, I wait for Friday to talk to Dr. Tsai.

In the meantime, Cyndi and I walked my .3-mile route this afternoon.  I had to pause a few times but my hip wasn’t much of a problem after taking some Tramadol before the walk.  It seems to work better than Tylenol.  My back muscles did tighten up some, but not too bad.  After dinner, Cyndi’s tasty beef barley soup, I had the thought that I could go for a walk.  Well, we did go and do my .2-mile walk.  It almost felt easy.  .5 miles today is pretty damned good.  My side ached a bit after the afternoon walk.  It aches a bit after this evening’s walk, but not too bad.  I should sleep well tonight.


Anticipation.  What does Dr. Tsai have to say?  Not much really.   We talked about the results from pulmonary and that Dr. Tsai wants more clearing of the lungs.  She wants to make sure the fungal infection in the lung is gone.  Going into a stem cell transplant with a fungal infection can be fatal.  Not good.  So, we wait some, but maybe move forward wherever we can.   We talked a bit about my aching side, still hurting some, my walking, and a few other things.  I get to skip my every-three-year colonoscopy.  That could be good or bad, depending.  I’d probably bleed like a sieve if I had one done with my LOW platelet counts.  Not worth the bleeding chance or infection chance.

High Dose (HDTU) was busy today (painfully slow, from my perspective.) It was overbooked like that United flight where a passenger got dragged off.  I wasn’t dragged off, but was made to sit out in the lobby because there was no room at the inn for me.  It happens sometimes.  Blame it on Memorial Day, this time.  It’s easier to get comfortable in a private room with a recliner, a bed, chairs, a toilet and a TV instead of sitting in a lobby in a chair.  Unfortunately, Cyndi took me in this morning and she had to suffer the same uncomfortableness as me.  Sorry, Cyndi.

I didn’t need any blood today, just my Nplate injection and the doctor’s visit.  My next day at High Dose is Tuesday.  It will probably be just as busy except this time I will get there about noon instead of 8:00 A.M.  Tuesday will be a long day since I will probably need blood.  I like the morning times but the sickest patients get priority and I am low on the totem pole.  It’s all relative.

Next week and after.

The next CT scan of my chest will be in about 6 weeks.  In the meantime, my blood needs to be cleaned of antibodies that have built up.  It must be done before my transplant so my antibodies don’t react badly with the donor antibodies, or something like that.  They must get along with each other or I’m in deep doo-doo.   There is a lot to this antibody stuff and a lot I understand about it, but most of it, I can’t seem to explain to others.   I’ll have to think about it and try to explain it to myself first, then to others.

The time frame, the plan, for all this, for me, gets talked about by all the BMTU doctors.  Sometime soon, Dr. Tsai and I will again talk about whether a donor match in the national database can be found (nothing found before) or if it will be my brother Norbert’s marrow (only a half-match) that will be used, or if the use of cord blood is best.

No transplant will occur before July at the earliest.  That’s not something I wanted to hear.


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