Any day now

6/13 – a Tuesday (and it’s not Belgium)

MYOCARDIAL PERFUSION, PHARMACOLOGIC, STRESS – REST

Inject radioactive dye, scan, inject drugs to simulate exercise, more radioactive dye, scan again.  This is how I started my week.  The test took a couple of hours and I couldn’t have any caffeine before it.  That’s okay.  It was too hot for coffee anyway. This test was done using SPECT (single photon emission computed tomography) and not PET (positron emission tomography).  I had whole body PET scan done not too long ago too, from the top of my head to the bottom of my feet.  Both these tests, of course, differed from a MUGA (multi-gated acquisition) scan I had earlier.  Then there are your run of the mill CT (computed tomography) scans, echocardiograms (What!? no acronym for this?), EKG or ECG (electrocardiogram. Wow! 2 acronyms for this one.)

All these tests, all these letters.  All these $$$$’s.

Sorry about the ABCDXYZ … distraction.  Immediately after the SPECT, I went to the cardiologist who ordered it.  I need his cardiac clearance to get the BMT (Oh no! More letters.)  Well, he did clear me even without looking at the stress test results, which wouldn’t be ready for another day anyway.  I am considered a moderate cardio risk.  If the stress test were to find something bad, all that would mean is that I would be put at a higher risk.  There is no reason to keep me from the BMT or BMSCT.  I’ll get to these letters later.

My last stop was in High Dose, or should I say HDTU.  I got my labs drawn, my HgB was 7.9 so no blood was needed.  I wasn’t doing any bleeding so I got no platelets even though the number was down to 5.

This thought crossed my mind that 40 years ago today, I began working at Bell Labs (Bell Telephone Laboratories, I think was the official name, then) in Naperville, Illinois.  So, what. This means nothing to most people.  It’s just a random thought.  I was 40 years younger too, in great  shape, just having coming back from a multi-day canoe trip in the Boundary Waters of Minnesota when I started working.  Now, I’m fighting to stay alive.

6/14 – must be Wednesday

Excitement?  I didn’t know I was going to be coming to High Dose until yesterday.  Dr. Tsai decided that it is time to start desensitizing me. Desensitization is needed to get rid of unwanted antibodies in my system.  The goal is is to minimize the risk of any antibodies I have interfering with the cord blood I will receive during the bone marrow transplant. We want to get along and not reject each other.  Anyway, I started on a course of Bortezomib (IV push) and Rituximab (about a 6 hour IV infusion.)   I did have my labs drawn and my Hgb dropped from 7.9 to 7.0 in one day.  That explains why I was feeling so much more fatigued this morning.  I’m not bleeding so I’m not getting platelets, but I have go back Thursday for blood.  The Dr. didn’t want to overload my system with any blood products today.

Good news about the stress test – nothing bad found.   I was at moderate risk before and remain a moderate risk when it comes to cardiac issues.  Good enough for a transplant.

More good news.  Now that desensitation has begun, I am told I may or may not need plasmapheresis.  If the Rituximab/Bortezomib can get my antibodies to a low enough level there will be no need for it.  Even if they decide I need the plasmapheresis, it may not have to be done before I get admitted. It all depends on my antibody counts next Monday.  I guess it takes 4 or 5 days to see how effective these drugs were, then a day for the test results.  The word is that I should be ready to pack up and go to the hospital at any time with little warning, 

6/15 – a Thursday

I got both blood and platelets today, the platelets because I had some bleeding issues this morning – one of my nosebleeds.

I have to wait until Monday to get my labs drawn and probably Tuesday to find out what’s going to happen next.  Everything is starting to move so fast now.

Before I forget, BMT is Bone Marrow Transplant.  BMSCT is Bone Marrow Stem Cell Transplant.  I use the phrase stem cell transplant and bone marrow transplant interchangeably.  I will get the stem cell transplant in the BMTU, Bone Marrow Transplant Unit.  Oh yeah, HDTU is High Dose Therapy (or is it, Treatment) Unit.  I should know since I’ve spent so many days there this year.  I’ll have to ask.

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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.

The week that moves me ahead or slows me down …

Tuesday.

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.

Wednesday.

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.

Thursday.

 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.

Friday.

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.

.3 miles

[ In the morning]

I feel good today.  I’m not feeling a bit “off” like I was yesterday.   Today, I seem to have plenty of energy. Today is May 18, and again, the date doesn’t really matter.   I reread yesterday’s post and it just seemed so down that I needed to add a cheery post to counter it.  I’m not going to get too cheery.  That would be ridiculous.  I don’t even know what I am going to say, but something will reach my fingers then the keyboard.

I am going to try for .3 miles today with a Tramadol appetizer.  We’ll see how it goes.  Cyndi will walk with me as she did yesterday.  Let’s hope my hips don’t hurt too much or that my back doesn’t spasm so much that she has to go home and get the car to bring me home.  Of course, Cyndi could use the lazy-parent trick-or-treat method by following in a car.  We see this every Halloween even though it is probably people that don’t live in the subdivision but in nearby apartments.  Our subdivision is generous at Halloween.  Anyway, Cyndi would want to walk and not follow in a car.

 [Later in the day]

Well, we are back from the walk. .3 miles.  I even had the notion that I could go a bit farther, but decided that it would be better to make sure I could walk back home.  Cyndi didn’t have to carry me or even get the car.  The hips didn’t hurt today, even though I could feel them at times.  The back muscles started to tighten a couple of times, but I paused before they got too tight.  I didn’t even get short of breath.  That’s a good thing. All in all, this was a good walk.

The strange thing with this disease – some days are bad, some are  good.  Today was a good day, an energetic day.  Besides the walk, I sketched out a design for replacement fencing we are considering and with a little help from Cyndi, fixed a gate with a hanging board and hung a mirror in the powder room.  That’s a lot of to-do’s for me even though it doesn’t seem like much to others.  And to end with something pleasant, the lilacs are blooming and smelling really nice.  Too bad you can’t smell what I smelled when I took this photo.  I really do like the smell of lilacs.

Blooming Lilacs

 

 

 

.2 miles

[ In the morning]

I don’t feel good today.  I’m just feeling a bit “off.”  I cannot describe it, really.  Yet it seems that I have more and more days like today.  No or little energy. Today is May 17, but the date doesn’t really matter.   I need to keep active and I am going to try to walk later.  .2 miles is about as far as I can go now.  The doctors really want me walking a mile.   At one time, I would have laughed and said, “Nothing to it, Doctor.”  Well, times change and a mile seems forever.  One of my hips starts hurting which makes my back muscles ache which makes my other hip ache which makes my calves ache which lengthens the list of excuses.   Excuses that make it hard and painful to walk that make me not want to walk.

Still, I’m somehow going to get a walk in.  I’ve been working on building up endurance, which is hard to do these days.  I got a unit of blood yesterday, but it doesn’t seem to have boosted my energy levels.  That little boost in hemoglobin usually helps.  Not today.

[Later in the day]

Well, I am back from the walk.  Surprisingly, the hips weren’t the first to hurt.  The back muscles tightened up about 1/3 into the walk I had planned.  Frequent rests to let the back muscles loosen up helped.  Taking some Tramadol before walking might have helped with the hip pain.  I’m experimenting with Tylenol and Tramadol to see how far ahead of walking I need to take pain medications and, whether they help or not.  I can’t take anti-inflammatories like Aleve or Ibuprofen or aspirin.   I don’t need any drug that could get me bleeding because of my low platelet counts.  The doctors are also trying to arrange an appointment with a physical or occupational therapist to see if they can figure out a way to reduce my aches.

Do you know how short .2 of a mile is?  It’s just a little over 1000 feet. That’s nothing.  Not long ago, I didn’t even give it a thought.  I just got up and walked whenever and wherever I wanted.   I didn’t really care for walking around the subdivision where I live.  I would rather go somewhere where there is a trail or path.  Right now, I would be thrilled to walk more than the .2 miles in the subdivision.

I sometimes wonder if I am just getting weaker and weaker.  I keep telling myself that everything will get better after the stem cell transplant.   Then, I wonder if I ever will get the transplant.  Staying optimistic is hard work.

I started writing this post this morning.  I didn’t know what I was going to say then.  I think it was partly a way to get me moving, out and walking.  Well, it did work.  It got me to walk my measly .2 miles.  Tomorrow?   .3 miles?