The week that almost was, could have been, and wasn’t

 

Monday, 6/19 –

I get tested for antibodies to find out if the desensitization started last week is working.  I’m told to be ready to get admitted, the same day, if the test being run shows a score under 3000.  Don’t ask me about the test (some kind of antibody testing.)  It takes a while for the test to run, so I go home and wait for a phone call.  Late in the day, I do get the call and the number is over 3000, but Dr.  Tsai wants me admitted Tuesday anyway.  The thought is that maybe they will begin doing plasmapheresis as an inpatient to bring the number lower.  I am supposed to call Tuesday morning, but should packed for the hospital.

Tuesday, 6/20 –

I’m packed, ready to go.  I call in and talk to the stem cell transplant coordinator who checks with the doctor.  The plan has changed.  I won’t be getting admitted, but need to come in asap so another round of Rituximab/Bortezomib can be administered.  Arrgghh!!! Make up your mind.  I go in to High Dose, get these drugs, followed by two units of blood (HgB dropped from 7.7 on Monday to 6.4.)  A long day.

I do talk to Dr. Tsai and complain about the “get admitted today” to “get admitted tomorrow” to” not getting admitted” all in less than 24 hours and how irritating this is.  It feels like I am one of those bouncing balls in a lottery machine and my number doesn’t come up.  She apologizes.  Fine.  Since my antibody levels didn’t drop off, she thought that maybe I could begin plasmapheresis as an inpatient, but after consulting other BMT doctors, it was decided that it would be best to go for another round of chemo towards desensitizing me.  What a mess!  Frustrating, Confusing.  Irritating.  You get your hopes up, then knocked down.  It’s been like that all year.  The plan now is for me to come back on Friday for my routine checks of my blood, then Monday morning to check antibody levels and maybe go through the same confusing, irritating process as the Monday this week.

Dr. Tsai and I have talked about the treatment plans and how they can change quickly, even day to day, and that I should be ready to get admitted at a moment’s notice.  Everything depends on the blood tests now and when my body and blood will be ready for the BMT and when scheduling permits.

Friday, 6/23 –

Dammit.  My HgB is down to 7.4, my platelets down to 3.  It’s decided I could use a couple of units of blood today and some platelets. The bag of platelets was more than double the normal size.  A generous donor, I guess.  One of the units of blood was larger than normal too.  If they didn’t give me some Lasix, I think I might bust like a water balloon.  I also had a chest CT to check on the clearing of the pneumonia I had and other crud.  Let’s hope the scan is clear enough for the BMT.   Pulmonary cleared me after the last CT a month ago.

So, what’s next?  My next potential date for getting admitted is July 5, 2017.  If my antibody counts are under 3000, this date becomes a “sure” date.  If not, the doctors will have to decide on more desensitizing chemo or maybe plasmapheresis.  Also, I did find out that the closest matching donor cord blood I will be getting is coming from France and Britain.  Watch out people, I may become European after my transplant.  Whether that’s good or bad I don’t know.

 

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Getting closer

Yesterday, Friday, June 9, was a long day, a hectic one at times.   On days I go to High Dose, I get up at 5:30, wash up and get dressed, have some breakfast, make a lunch in preparation for a full day in High Dose, get all my pills and reading material together.  I leave about 7:20. On good traffic days it takes less than ½ hour, other days more.  After I get to Loyola, I text my wife that I made it there and am going into the building.  Cell phone service is sketchy at best and Sprint seems to have the only reliable service inside the building.  I don’t have Sprint.  I don’t have cell service in the Cancer Center.

Next, I get my blood drawn, wait for the results and hope I won’t need anything.  I usually do.  Once I know, I call Cyndi from the room phone, let her know which room I’m in and how long my day will be.  I began with a round of platelets, then snuck out for a bone marrow biopsy with Dr. Tsai, came back, got some blood going, had lunch, got some more blood going, dealt with getting appointments scheduled and talked about my future treatment plan with doctors and nurses.

Finally, I left for home, in the worst of rush hour, stopped at Walgreen’s to pick a prescription I refilled, got home, plopped into my chair only to remember that COMCAST SUCKS. (The cable went out on the main TV and COMCAST won’t be out to fix it until Monday – 4 DAYS.)  The other TV works but it’s not in a comfortable place to watch and it doesn’t have all the channels the main TV has.

Plopping down wasn’t the best idea since my butt hurt from the biopsy.  It wasn’t too painful, but it reminded me that 4 or 5 new holes were dug out of my pelvis across several attempts to get at some bone marrow and fluids.  The one and only time my pelvis was generous was the very first time I had a bone marrow biopsy.  Since then, the doctors can’t seem to find much of anything.  This was the fifth biopsy.

Where would I rather have been yesterday morning?  At BAGS.  It stands for Breakfast at Grandma Sally’s.  Grandma Sally’s burnt down and never got rebuilt, but the breakfasts continue with a handful of people I used to work with.  Every few months, we get together for breakfast.  It was nice.  I can’t go to these or any breakfasts (or lunches or dinners.)   Well, maybe I could go if the restaurant is not busy, it is mostly empty and if I eat away from anyone else.  That means I eat alone or maybe with my wife.  Someone somewhere even said I should carry some wipes and wipe down the table before eating.  The doctors want me to avoid infections.  I’m not going to argue about that.  I’ve had enough that have delayed me from getting transplanted.

Cyndi says that I am not in control of my life and that the doctors at Loyola are.  Cyndi is right.  They have controlled my life for a while now.  It stinks, but I have no or very little choice.  Not letting them control my life isn’t an option.  I won’t have one if I don’t let them control me.   I get my 2 cents in when I can.  That seems to be the best that I can do for myself.  I’ll have to give this topic more thought.  I really don’t have a life without the doctors.

What’s next —

June 21, 2017 could be the date that I get admitted to the hospital for my bone marrow stem cell transplant.  I say “could” because there are a couple of things that need to get done first.  Getting cardiac approval for the transplant is the next hurdle.    I had an echocardiogram done recently.  It showed some changes from the previous echo that Dr. Tsai wants cardiology to look at. The appointment should have been scheduled for some time last week and wasn’t.   It finally got scheduled for Tuesday morning.   Then after scheduling the appointment, the cardiologist’s office calls back and says they want me to take a stress test before the cardiologist looks at me and tells me if I am good to go or not. You would think that they would have had the sense to mention and schedule the stress test before scheduling the doctor’s appointment.  Now,  the stress test is scheduled for Tuesday, at the same time as the cardiologist.  The cardiologist is going to have to reschedule, hopefully later in the day Tuesday or in the same week.

What a mess!

Trying to schedule anything, especially when multiple doctors are involved is a pain in the ass.  Doing it on a Friday afternoon is even harder.  Cyndi did the heavy work here.  It wasn’t me.  This is where her comment about my having no control over my life originated.   She sensed that I’m being pulled in all directions without control from these different fiefdoms who don’t always play well together when it comes to appointment scheduling and coordination.  Each specialty seems to live by their own rules that ignore the needs of other specialties.

Cyndi did a great job  trying to get appointments scheduled, handling multiple phone conversations with doctor’s offices and myself all at the same time .  I love that woman.

After the cardiologist hurdle, I get to get begin a desensitization process to reduce the number of antibodies in my system so that they do not encounter rejection problems with antibodies found in the cord blood stem cells that I will receive.  My latest labs show that I have less antibodies than before which will speed up the process of getting rid of as many antibodies as possible.

The first step is to get an IV infusion of Rituximab.  It takes 6 to 8 hours to administer.  The way I understand it is that it doesn’t kill off any antibodies, but works on the cells that produce antibodies.  Later in the week I get another drug via an IV called Bortezomib.  This one only takes about 15 minutes to administer.  I’m not sure what this one does.   I’ll have to look that up. Once  these drugs do their thing, it will be determined if I need to go through any plasmapheresis, which is used to remove antibodies from my blood.

If I get past all the above, I will be admitted into the hospital where I will spend several weeks, maybe a month or more, first getting my immune system killed, then replaced with cord blood.  If things work, the cord blood will begin to produce healthy bone marrow and healthy blood cells.  One problem with cord blood is that it takes longer to get cell production going than with matching donor cells.  This is mostly because there are less cells in cord blood.

Another post will get into the nitty-gritty of the hospital experience.  And, of course, if anything changes or comes to mind before any of the above happens, I’ll post about that.

Moving forward, but …

Another post, so soon after the last one.  Well, this time I know a little more.  A little can be a lot sometimes.  Moving forward is better than one step forward, two steps back.  It’s a good thing.

There always seems to be something that gets in the way.  For example, I had an echocardiogram done the other day.  The part of it that the doctors were previously concerned with improved from what I am told, but now there is something else in the echo that needs a cardiologist to look at, or rather, have the cardiologist look at me.  Shit.

I might have had the sense to ask Dr. Tsai what this other thing is, but my brain stopped functioning as blood poured from my nose – just as Dr. Tsai was entering the room.  Perfect timing.  I had Dr. Tsai grab some paper towels from the bathroom.   At the time, I was being transfused with blood dripping into my internal jugular vein as blood drained from my nose.  Such fun!  The blood going in won the race.

It was a busy day in High Dose today, Friday, 6/2/17:  Lab draws, dressing change, 2 units of blood, 1 unit of platelets, my weekly Nplate injection, the visit with Dr. Tsai, nosebleed included.  I haven’t been getting platelets even with low platelet counts, but since I’ve had some bleeding issues this past week, they decided that it wouldn’t hurt to give me a few.

Tuesday was an interesting drive to Loyola.  I’m driving along and feel my fingers sticking to each other and the steering wheel.  WTF???  I look and I’m bleeding.  I grab a paper towel I fortunately had in the car and keep on driving trying to stop the bleeding.  It’s only after I get to Loyola that I realized the blood came from one very small, barely larger than a pin-prick, hole in my finger that had scabbed over.  I must have knocked off the scab somehow.  Stop lights helped a lot.  It was the only time I could really apply pressure.  And, no, I wasn’t distracted by my bloody driving.

Bleeding.  I hate bleeding.  I imagine most people do.  It’s Saturday, the 3rd and I was thinking of going for a walk early before it got too hot.  I’m not ready for this hot weather yet.  So what happens?  That damned nose of mine starts bleeding again. It doesn’t take long to stop when I apply pressure, but it makes you not want to do anything for a short time after in fear that it will start up again.  I was really bummed out, more than usual, because of this.  The one step forward ALWAYS seems to have a reverse to it.  I rate this nosebleed at about a ½ step back.

I did make up for this half step by going to Yorktown Mall and walking there.  Of course, Cyndi came along.  I made it ½ mile with less rests than I do walking the streets of my subdivision.  I felt good about that and it cheered me up a lot.  The cane I bought yesterday helped.  I didn’t have any hip pain and my muscles didn’t tighten up like they did last week.  The smooth floor made a difference as well.  Sidewalks in my subdivision are uneven, sometimes treacherous and contain obstacles deposited by Canadian geese.  I’ll find out of the cane helps me walk on the sidewalk when the weather cools.  Later, when we got home we cooked up a couple of T-bones.  For some reason, they were really good this time, better than normal.  The bad thing is that I can’t drink any wine with it.  I don’t need to thin my blood any more than it is.

It’s Sunday and no nosebleed this morning although it seemed like there might be for a brief moment.  Saline mist sprayed up the nose helps with the dry stuff and helps flush all the gunk.  I can’t blow my nose because of fear of starting a bleed.

Later, we went to Yorktown Mall for a walk.  I did manage to do the ½-mile walk, but I forgot to take the Tramadol beforehand.  I found out that the Tramadol does work.  I was in a bit more pain today without it.  The cane definitely helps; otherwise, I might not have made the full distance.  I probably walked an additional ¼-mile when we went shopping and between walking from/to car and store.

Moving on that’s what’s happening.  Let’s hope cardiology doesn’t find anything to keep me from being transplanted.  They didn’t before.

I’m scheduled for a bone marrow biopsy this week.  I didn’t know I had one scheduled until I looked at the Loyola myChart site and saw the appointment schedule.  I will have to yell at someone about this.  Someone should have told me about it.  Not a big deal, but annoying.  This will be my fifth bone marrow biopsy.

Blue Cross Blue Shield.  I’m under my wife’s federal employee program for this insurance.   It’s a pretty good plan but a bone marrow stem cell transplant needs all sorts of special approvals.   Approvals are being worked on.  Quickly, I hope. With the amount of money that BCBS has spent on me already, I don’t think they like me very much.  They probably want me to just go away.

Desensitization is the next step, but I’m not sure when it will start.  Soon, is what I hear.

For the transplant, cord blood is to be used.  There are no donors in the database that match and my brother can keep his bone marrow.  It comes down to antibodies and minimizing rejection.  More on this later as I know more.

Thursday, June 1, 2017

There is really no reason to write other than I’m getting impatient and antsy and stir-crazy.  This is one outlet that I use to calm me.  No one has to read this blog or post.  This post will probably bore you.

I need to go upstairs, wash up, get dressed and think about when to go for a walk.  I took my pre-walk Tramadol ½ hour ago.  I updated my list of questions for Dr. Tsai and decided to write these random thoughts floating around in my mind.

Ups and downs.  Good days and bad days.  Full of energy or too fatigued to do anything. Feel good one minute, then feel like crap the next minute.  Much of the time there is no rhyme or reason for all this.  I get some blood one day.  It usually makes me feel better the next day.  Other times, I feel worse the next day.  One day I can walk .6 miles (in 2 separate trips) with little trouble.  Other times I struggle to walk .3 miles with many stops to rest and let my aching muscles relax or to catch my breath.  I refuse to cut any single walk back down to .2 miles.

I’m waiting to find out what comes next.  I didn’t see Dr. Tsai on Tuesday (5/30), but will on Friday (6/2).  I am writing this on 6/1.  Dr. Tsai scheduled an echocardiogram for the Tuesday that just passed.  Why?  I don’t know   I found out about it when scheduling called and said I have to come in for the test.  Getting the test could mean that things are moving along and they just want to compare the results against previous tests.  Or, it could mean they see something in the lab tests or my struggles to walk or breathe that warranted this echo.   When you’ve had cardiac issues in the past, you don’t like medical people ordering heart tests.  Cardio signed off on the transplant before.  Let’s hope they are still okay with it.  I will find out Friday.

The appointment time was in the middle of my scheduled time in High Dose.   I go to High Dose, get my labs drawn and dressing changed.  The lab results come back and I could use some blood.  Instead of ordering up the blood right away, they have to wait until I come back from the echocardiogram, which of course is in another building.  Because of the time of day, I only get one unit where I might have otherwise got two units of blood.  No real big deal.  but now I will probably need blood on Friday.

Yesterday, after dinner, I sat down at the computer to check my mail.  Suddenly, my nosed poured blood.  I hope it will come out of the shirt I was wearing.  No warning at all.  Not even a sniffle.  It stopped, with minor pressure, in about a minute.  I didn’t go for the evening walk I was contemplating.

I’m also not too thrilled with how some things are done.  Yesterday, Wednesday, Cyndi called the pharmacy to get my next dose of Granix scheduled and delivered.  She was told that the dosage was being reevaluated and to wait until I see Dr. Tsai.  It’s a minor thing but it would have been nice to find this out from Dr. Tsai’s office instead of the pharmacy.  I’m hoping that they will be cutting back on the dosing since it has been working so well.  This is about the only thing that has been working well, even though I am having a harder time finding a bruise-free area to inject myself.

Well, I’m now dressed and Cyndi and I went on the walk.  I was miserable and almost felt like giving up on it, but I didn’t, thanks in a large part to Cyndi’s encouragement.   My back muscles kept tightening up today, faster than normal and they took longer to loosen up when I rested.  I got the .3 miles in.  When we got home Cyndi, put some Ben-Gay onto my aching muscles.   I’ll try for a walk this evening, but maybe the .2-mile route.

It’s time for lunch.  This is it for this post.  If it was too boring, I warned you at the beginning.  Now, I’m bored writing it, with adding any more words to this mostly unnecessary post.