Wednesday, April 28, 2010

took a break

Well, I stopped working at 3:00 because I was tired but I was still able to drive to get Chinese at 5:00 (after a nap).

I went for a walk today and made it as far as a couple of blocks.  It's not that I was all that tired, but it was cold and breezy and my long sleeve shirt wasn't keeping me warm enough. 

It was nice to get out.  And I will get through the last of this.

Tuesday, April 27, 2010

another day, and yes I'm working...

Well, I got 8 hours in today.  I've been working pretty close to a 40 hour week since the week after my infusion.  Thank goodness I don't have to drive.

I'm a little tired, considering where I am in the cycle that's normal.  At least the heartburn hasn't been bugging me and I haven't felt any nausea since last Wednesday.

I can finally wind it down and feel an end to the cycle of nausea, heartburn, tiredness etc.

Now I'm just tired.   And that doesn't bother me at all.

Sunday, April 25, 2010

feeling much better

I have been feeling much better and much stronger. 

My diet has changed too: I'm going back on the low carbohydrate grind and am slowly squeezing them out of what I eat.

I went out to do some shopping by myself and drove to some stores.  It was so wonderful and strange to feel myself behind the wheel again. 

I did get out and drive to fill up my tank about a month ago but the last time I drove before that was in December.

I suspect that I'm cresting before I go into the doldrums of the funky blood counts.  I'll be tired by Tuesday, but today I feel great.  

And in the not too distant future I will be out of the cycles and into the never never land of life.

Thursday, April 22, 2010

A Brief walk and lots of work

I'm going to be going into the 10-14 day post infusion doldrums in a couple of days so today and tomorrow I'm in that sweet spot where I feel pretty good and have reasonable energy.

I spent a lot of time working today - there was a project that had to get done.

I haven't been tracking my blood sugars lately, just taking my drugs and eating the usual stuff.  I think it will be time pretty soon to cut back on the starches (so necessary for psychological support) and get down to the business of losing the weight I've gained during all the chemo.

I took a brief walk today in the late afternoon, but I was already feeling tired so I only got a couple of blocks before I came back.   One of these days my walks will be longer every day.

Wednesday, April 21, 2010

waking up late

My muscles were not feeling well last night, and I thought that my back would be having muscle spasms so I decided to take one of my really serious pain pills.

I slept about 10 hours and I felt great.  A little groggy but great.

It's fun not to have to look forward to another infusion. I'm starting to feel better.  I felt better today.

I was beginning to think I would never come out of the tired, nauseated feeling that I have been wrapped in the last several days.  But it is one week since the infusion and that is the border where I begin to feel better. 

I am feeling better. I walked about 3 blocks today.  It was nice.

Tuesday, April 20, 2010

missed a posting

Not for any particular reason, but Monday was simply a day of exhaustion.  I also worked. 

I had thought of sending an email saying that I was brain dead and tired but there was a little bit of my feeling dutiful and in need of the money.  I did about two hours and slept between 11:30 and 2:00 which got me up just in time for an email saying something like "Can you get this done by tomorrow morning".

So I actually put in some hours, and same the next day.   But although I have been a bit better each day I am still tired.

Perhaps tomorrow I will be exhausted without heartburn.  I wait with baited breath.

Sunday, April 18, 2010

not a vast improvement, but enough to make me feel optimistic

I'm optimistic because I've been through this before and I know that I will feel better each day until I get to the point where I start getting tired. 

But tired doesn't bother me that much.

I decided that I would feel better physically if I could once again hear the deep rhythmic sound of someone chanting OM.  So I downloaded several and found an hour long "Jean-Paul Soares" version of that for 99 cents.

Cheap thrills.


Loading my MP3 player was something of a challenge, I wanted to be able to sit outside and listen to it and just feel myself relax.  But getting it to work took a couple of tries and a few MP3 player reboots to get everything I wanted downloaded.

I'm a little tired of taking drugs to ease the various pains involved in chemo and my thought was that this would provide a comfortable ambiance.  

And I was right about that.


At the moment I have my ear phones wrapped around my head and I'm just feeling my insides vibrate so pleasantly.  OM.

Saturday, April 17, 2010

Although horrid, I think the day will end and tomorrow will be better

It has been a day of stomach and intestinal upset and weakness.  After lunch I went up the stairs to get the laundry and felt weak, and breathless and could feel my heart working extra. 

I was breathing hard.

Now that I'm back typing to just typing I'm feeling better.

I took time after napping to sit on the deck in the back of the house and occasionally look at the pages of a book.  

I spent a lot of time looking at the tall pines and young broad leaf trees in our back yard and between our neighbor's houses.

The reason I was sitting on the deck was that I was so easily exhausted simply by walking to the end of the driveway to pick up a paper.

This will not last longer than a few days; Monday I will feel better.  I'll be doing great by mid-week.

Friday, April 16, 2010

Another day after the day after...

A lot better today than yesterday, although that little bit of heartburn is still with me.  Yesterday I had a lot of queasiness and general gut discomfort.

I've noticed over the last couple of days that food seems to keep me satisfied longer.  I don't know whether to attribute this to any particular drug, but I think I will have to start taking my little magnesium oxide tablets on a more regular basis to move things along.

I walked about half a block: it was nice to get out.

It seems to have been a long while since I first started these treatments on New Years Eve and it has been a mix of eerie sensations and joys.

On the one hand the treatments are a bit brutal: sudden chills which pass in a few moments; nausea, intestinal discomfort, diarrhea, constipation and sinus problems.  Not to mention the need for surgery to install a port and the many pokes involved.   The many entertaining postures I take up to get the port to actually work the way it is designed.  There is that copper color my urine takes on during and after the infusion.

Having all my hair fall out.

But my condition when I started wasn't the best: neck and head muscle spasms that would make the world's most pain cherishing masochist scream.  A bevy of drugs to control them.  Nights sweats drenching my T-shirts every night.

I had to sleep in a chair or couch half sitting up after my "in my throat" biopsy.  The inside of my throat was swollen so that I had a difficult time swallowing and I would not be able to exhale properly if I lay on my back.

I was actually dying.  Drugged so that I really didn't think that far ahead but my destination would have been an uncomfortable death.

But even during the first infusion as the Retuximab (Retuxin) was dripping into me I felt a relaxation and sense of relief in my neck and within the week I was able to sleep lying down.

After the first week or so after each infusion the discomforts began to wear off although my immune system would take a substantial hit a few days later.  I would start feeling better as I would recover from the cancer and the infusion. 

Six R-CHOP infusions and four spinal infusions with other drugs are a small discomfort compared to what my "natural" outcome would have been.

And I'm feeling pretty good.

Thursday, April 15, 2010

The first day after my last infusion

I pretty much stayed in today. I got up early, probably because of the prednisone, but also because I tend to nap a lot when I'm infused (Benadryl). 

I started work at 6:00 and ended at 11:00 with a nap that lasted about an hour.  Which is a lot for the first day after.   I'm happy with the amount of work I got done.

Not bad for the first day after - just a little heartburn.

Wednesday, April 14, 2010

The one and only last one?

I hate infusions.  I can finally admit that to myself.

The odds of the cancer coming back is 50/50 which is why I am choosing to be part of a clinical trial in the hope that more drugs will stave off a recurrence of the dreaded lymphoma.

At least for a year.

I have a PET/CT scan in another 4 weeks and I see my oncologist again.   Presumably he'll take blood and I can see if my immune system is up to going back to work.

Which is not to say that I will be ready to go back to work full time. But maybe some time.

Monday, April 12, 2010

Counting down one last time (hopefully)

Well, I hope it's my last one.  I think it is.  It's gotta be!

Wednesday will be my last infusion and I am so grateful that  I made it through this far.  After this comes the complex part of finding out where to go for the clinical trial and perhaps more details.  Find out when I can schedule some time to do something fun (like go to the beach this fall) or travel back to Wisconsin for a visit with family.  Go back to work at the office instead of working at home. 

But first I have to make it through my last infusion.  Take the dreaded prednisone one last time.  Have that feeling neatly described by a certain niece of mine once, quite succinctly: Yuck!

Saturday, April 10, 2010

Quality time with my tumors

Well, presumably they are gone now.  Or scrunched down so I don't feel them anymore; but here I am poised to have my last infusion (coming this Wednesday) and I'm getting weepy eyed over these little friends that have been sucking my life blood like vampires over the last year.

I wonder what the one in my liver would be doing now if I weren't dead or hadn't flushed my system with chemicals that kill tumors?

What about the one in my spleen?

One more inhalation while they press the needle into my port and then spend the next twenty minutes making sure it works properly.   One last blood draw where they test my various cell counts to see how I did last time.   And then the drugs.   The waiting; the napping from the Benadryl and finally going home to the really important questions: will I have constipation, or diarrhea?

Friday, April 9, 2010

awash in speculative retrospective bewilderment one more time

As I approach my last infusion of the six treatments that were planned I want to look back and see how I got here. 

As much as I can piece together from emails this is the time line:


  • It could be a headache (end of June).
  • OTC pain medications (July)
  • X-Rays of neck with small disks C4-5 and C6-7 (start of August).
  • Visited KMI massage person (day of x-ray)
  • Changed monitor at work and try to stand up straight
  • Skelaxin
  • Skelaxin plus muscle spasms in neck (mid August)
  • Carisoprodol (late August)
  • Glasses (September) 
  • Lumps (early November)
  • ENT (mid November)
  • CT scan (late November)
  • Biopsy (I lose my beloved tonsil: early December)
  • Biopsy Report (mid December)
  • Meet with Oncologist (late December)
  • First Chemo session (New Years Eve)

    From this and looking back on my emails to my doctor I would draw several conclusions:

    • Whenever I thought it was one thing or another I was always wrong and I was wrong a lot
    • My doctor was wrong a lot too
    • A lot of the advice I got from people was irrelevant or unusable
    • My cancer was found with a CT scan and a Biopsy
    • The CT scan alone led to guesses until the biopsy results arrived
    • It was treated when it was known
    The lump on my neck was the item that caused my doctor to send me to the ENT who looked down my throat and said that it looked full on one side.  That's why she ordered the CT scan.

    This lump mysteriously vanished three days before my first chemotherapy infusion.  I do not know what caused that lump to appear.  I have many speculations but I know how much I can trust them.

    Thursday, April 8, 2010

    awash in speculative retrospective bewilderment part one

    Next Wednesday is my final infusion; so I thought that now would be a good time for a brief look back on how I got here.

    I think of the speculation, both mine and my doctor's as what delayed me from something that could really help me.

    Sometime in mid-summer I began to have mild headaches.  They were rather vague and used to start in the morning about the time I went to work.  Naturally, I thought nothing of it.  It took an upcoming vacation to get me to email my doctor and get some advice about what to do.

    If you know me you might know that about 25 years ago, before I left Wisconsin I had headaches that seemed to be caused by some "inadequate" disks in my neck. Not enough to pinch the nerves real bad, but enough so I notice.

    In the new x-ray that my current doctor ordered these were at C4-5 and C6-7 for those of you anatomically disposed.  I would guess that the narrowing is the same as in the old x-ray.

    A little evidence can be a terribly misleading thing, and thus began the long venture in the land of "I wonder if it could be X, Y, or Z".   The x-ray was in early August.

    Of course the headache and neck strain could be caused by those little very little disks.  But might posture also be implicated?

    When my doctor was probing the stiff muscles of my neck they relaxed and kind of felt better and he suggested massage.   Which I agreed to and looked forward to with a sense of anticipated relief.

    At this point in my career as a patient I had graduated from simple OTC (Over the Counter) pain medications to pain medications (I think I was taking 4 Aleve per day) and a mild muscle relaxant called Skelaxin.

    I was about to put my toe into the water of sado-masochistic therapy.  I wonder if it should be called body work although the proper term is Kinesis Myofascial Integration and it has as it's theoretical underpinning ideas about how we get stuck in unnatural positions as we get older.  Literally stuck and the therapy unsticks us.  Forcefully.


    I have in the past referred to it as the son of Rolfing, for those of you who are old enough to remember the 1970's.  And the various therapies that evolved then.

    The process starts with the feet and is quite painful.  It doesn't work on the muscle it works on the connective tissues and it works hard.

    Normally in a massage you get undressed in a room, perhaps down to your undershorts and cover your self with a sheet and wait on a table.   With modesty and discretion always in mind.

    Ever have a picture taken of you in your underwear?   Just your undershorts?  After arriving for a massage and expecting a sheet and some discretion?

    Would you feel embarrassed enough to glow a rosy shade of red?

    Well that was the start and then came the painful massage.  

    I hurt from one end of me to the other and at the end my neck was twisted from side to the other side and remember that at that time I had no idea that I was carrying a soft little package of love right in there.  Where it was  being twisted.

    That pain was excruciating.

    Tuesday, April 6, 2010

    in the mid-cycle doldrums...

    Yes, I am in the mid-cycle doldrums.  Those few days where I feel a bit wobbly and don't walk very far.  When I tire early and wish to sleep late.  Those days. Yawn!

    What might be called pollen flour has come to North Carolina, so walking and inhaling all that pine pollen may not be a great idea.  But I did it.  Didn't walk too far; perhaps a block or so, but came back at least feeling that I had moved around.

    I took a hose to both our cars and after I came back inside the house saw more billowy clouds of yellow stuff wafting around from our pine trees.

    Gives a new twist on the term "yellow snow".

    Monday, April 5, 2010

    Day 12 and I am sleepy

    It's day 12 and I have been tired off and on all day.  I did work today, but all during the afternoon I considered quitting and resting.  I finally did at 4:00 but I could have easily quit at 1:30.

    I'm feeling more functional now but I'm sitting, leaning against the couch and not doing anything challenging.

    A cat is propped up on my lap and I have ear buds in my ears.

    I didn't go for a walk - just going up the stairs is a bit of a challenge.

    For the uninitiated: in days 10-14 white and red cell counts drop (were they to be taken) and platelets are trashed.

    Wasn't there a commercial for iron poor tired blood back when I was a kid?

    I've been here before -  I'll feel better in a few of days.

    Saturday, April 3, 2010

    Arbeiten macht...

    I worked today.  There was a project I wanted to finish and I had thought I was almost done with it Friday so I requested more work from my boss.  Then I discovered that I hadn't gone deep enough into the code and I had to actually figure out what it was doing.

    So I spent a few hours here, a few hours there with time for a lunch, a walk and some recreational reading in between.  But I got my project done.


    I just don't feel sick today.  I like working, it fills the time if I couldn't work I might have to do something like write science fiction.  

    Goodness knows what I might come up with. 

    Friday, April 2, 2010

    golden as the rising sun

    We went out to Whole Foods to get some groceries today and ran into our oncology nurse. During the course of the conversation we talked about what some other folks who have gone through chemotherapy have had happen to them. 

    The problems relate to immune system perturbations that begin with fever and end in septic shock.

    People can die from that.

    I seem to have been walking through this like some innocent golden boy trekking down a forest path while all the monsters in the deep and dark feast on corpses downwind and hidden while I stroll by unaware enjoying the country air.

    Thursday, April 1, 2010

    I have the pleasure of a beautiful day

    In lots of ways I am feeling much better today.   And for the past couple of days.  I didn't want to jinx it by telling you.

    But be consoled that your ignorance has been my bliss.

    I have had heartburn less often and my sinuses have been feeling better.  No nausea at all.

    I took a long walk today, maybe a good five blocks and the windows are open.  It was 75 degrees outside today.  Sunny and nice.

    Spring in this part of the country is very sweet.  Stuff (I don't know what) blooming, green grass and the smell of earth waking up.

    Naturally I attribute my well-being to the fact that I have past the one week mark after my prior infusion.  Although I have not experienced the savage diarrhea that I used to have in the first few days after.

    Actually, I've been taking my little white magnesium oxide tablets to help maintain regularity. 

    I can feel some of the places where the tumors were and everything feels perfectly normal. 

    It is of course two more weeks until my final R-CHOP infusion and although the thought makes me ill right now I know that after another couple of weeks I can face it without my stomach asking any impertinent questions.