That little problem?

My little problem has not gone away.  I can feel the pain under my diaphragm when I walk and I walked all the way to Highview today. 

I got used to it after a block or two or figured out how to walk without jolting my left side. 

It is feeling worse than yesterday, with a peculiar skin sensitivity that reaches around my abdomen on the left side under the diaphragm and around and up to my back.   On a scale of 0 to 10 sometimes I don't notice it and if I move around a little it's a 3 or 4 but can spike to 5 or 6 if I lean over to do something or get chilled and shiver.

Sometimes I wonder if something is swollen and I'm not feeling the pain from soreness but from the swelling pushing up against muscle and nerve.  But either way it's something that I'll communicate to the folks running the clinical trial.

I wonder if it will stop like magic if they take me off the revlimid.  But that would take me out of the trial and mean that I have to take my chances with recurrence on a drug free basis. 

On the other hand my immune system would come back.

well I do have one small problem

Of all the side effects (real or imagined) from the revlimid, the one that has stayed with me and become worse is tucked up under my diaphragm on the left side and feels sore. 

This started a day or so after starting the revlimid as a barely noticeable skin sensitivity and has become steadily worse.  

Is it the revlimid, or something else that had no time to get sick before now?

I suffer today's normalcy

Well, I've been taking my evening dose of revlimid for over a week now and the strange side effects are starting to fade; leaving me with the unpleasant feeling that I shall have to face the world without the peculiar sensations I have become so accustom to.

I went to work this morning and made it through two hours without much difficulty. 

I think I spent an hour catching up with old friends I hadn't seen since December.   Other friends than the ones I caught up with the last week when I had been in.

It is such a gratifying feeling to be in the company of friends. 

But I was bemoaning the lack of side effects. Or maybe the lack of euphoria.  After I came home I was fixing something, maybe a cup of coffee at the kitchen sink and as I was doing something I noticed that I was tired, but it wasn't an unpleasant feeling.  It was a comfortable tired.

That was the big difference today, I have actually started to feel good.

making sense of the senselessness

We went out for Chinese around dinner time and I greatly enjoyed the ride.  I felt euphoric with a bursting sense of inner joy.  Higher than a kite is the expression, I believe.

Consider that I never feel that way normally so it must be the revlimid.  Drugs can seem so liberating.  Aside from the downside and side effects that border on the painful.  I've developed a peculiar skin sensitivity along my side, like a sunburn my skin almost hurts to be touched.  My leg muscles feel a sense of strain from overwork that never took place.   I've had a few other peculiarities that I can't remember.

But every now and then I have this deeply relaxed feeling down my legs that actually feels good.  Or a euphoric feeling.

I really can't make sense of the side effects.  I eventually became familiar with the side effects of the R-CHOP and they were really obnoxious.  This isn't so bad.  But it is strange.

just a little light headed and quietly floating away

I'm beginning to notice things.

I feel so relaxed after dinner; just like a couple of nights ago.  I took the drug a little over an hour ago and I am now floating as though I were on some drug. 

Wait!

I am on some drug: revlimid!


My leg muscles feel tired and sore.  I didn't walk that far!

And I'm sometimes feeling a little dizzy.

looking for that silly little side effect

I am taking my aspirin to keep the more serious revlimid side effects away.  Since some of them can be fatal.

Taking drugs for cancer and the threat of cancer can be so serious.  It really makes me want to fart just to ease the tension.  

But I have felt a few things that could be construed to be side effects, although they have nothing whatsoever to do with the serious revlimid side effects I have read so little about.  The day after my first dose I felt a little strange, perhaps flushed in the neck and euphoric an hour or so later.  But after a nap I felt more my normal self.  I have off and on felt a little stomach upset and perhaps mild heartburn.  And my appetite is not so significant as it was just a few days ago (this might be a helpful side effect).   I am also in the bowels of a fit of constipation.

My legs feel like I have walked much more than I really have.  They don't hurt, but they have that overworked feeling from walking not that far over the last few days.

FYI: This clinical trial lasts a year.   I take the drug once a day each of 21 days and then I get a week off. So one cycle is 28 days, and I will get a total of 12 cycles.

revlimid, the final solution

I have been on revlimid since Wednesday when I received the drugs and started taking them on a daily basis.

Thursday I felt a little strange after I got to work, so I came home and continued to work there.  I started to feel euphoric.  But after being very tired, and then napping for 45 minutes the feeling went away.

The other side effects have been vague, except perhaps for some heartburn today.  And I do take my daily dose of aspirin. 

I am feeling a bit tired, but I'm not sure which chemo drug or infusion that is from.

It has begun to dawn on me that I would not want to have to go through another round of chemotherapy infusions to deal with a cancer resurgence.  So I hope this stuff works. 

stick a needle in me I love the pain

Today was day one of my participation in a Clinical Trial and a fun day it was too.  My port was not working properly and so I was stuck repeatedly and finally given a dose of TPA to unclog the little blighter.  I came in about 3:00 and left about 5:30.

They finally got the blood - vial after vial.  I was told that there was a guy waiting at the shipping dock to whisk it away to California or wherever it was going to go. 

The nurses who dealt with it were simply wonderful and great fun but that port has repeatedly been a problem.  

I've been trying to go to work a couple of days a week at the office just to be there and absorb some of the ambiance, but trying to stay for four hours is foolish.

It kills me later and the next day.

My doctor and his head nurse told me that it will take months for me to recover from this.  At the same time I will be on Revlimid too and it is impossible to say how that will affect my energy level when it has the same kinds of deprecating effects as R-CHOP.

The question I want to ask, and for which there is no answer is: of how much deprecating effect?

another lovely day in paradise

It's Saturday and I love it.  I put in 6 hours of work today which brings me up to 35 which is almost full time.

Theoretically I could sign the papers and terminate my leave, but since I'll be taking what I consider dangerous drugs I think I'll take a pass on that.  At least until I feel confident that they won't cause me to precipitously collapse.

Like so many spring days (although it's hot enough to be summer) it is absolutely beautiful outside.  I went for a walk and although I felt somewhat tired it was not as difficult as it was about a week ago.

Being outside is the high point of my day although spring looks like it is fading and becoming summer.  As the days get uncomfortably warm. 

I have my schedule for revlimid and it looks like I will be at the North Carolina Cancer Hospital one day a week over the next five weeks.  I start getting dosed on Wednesday and I will be in to either see my doctor or to get blood taken. 

Each cycle is made up of three weeks of drug followed by a week off.   There are a bunch of cycles and somewhere in the middle I will be PET scanned for any recurrence; I will also be checked at the end of the last cycle.

Will I be cancer free in another year?

something of a trial

I was really tired today.  This week took it out of me and I ended up working on a project all day that had to be done today.

Am I sick, or unintentionally masochistic?  Maybe both?

But better to do it at home rather than at the office.

I got a call from the folks managing the clinical trial and I am in arm A which is simply the oral drug.  At least I only have one set of side effects to deal with. I visit the doctor on Wednesday and pick up my drugs.

Another name for lenalidomide is revlimid which I think sounds so much less like thalidomide.   It is described on some miscellaneous web page as:  "immunomodulatory agent," and an "antiangiogenic agent".  Just what that means is beyond me.  

Naturally I Googled and this is the first web page I found: Chemo Care.

That is a pretty scary web page.  The side effects sound a lot like the ones I've had from the infusions except I might have a clot or bleed to death.

FYI: Revlimid

It's good that I'm only on one drug because two might kill me. 

a care free day at work

I got in to work at about 7:25 and left about 11:30.  I had intended to stay the whole day but my body just couldn't take the strain.   So I came home.

This was something of an educational experience. 

I brought some yogurt so that when I got a little nauseated I could have some. It helped a lot.  Plain Greek yogurt which was quite good.   Otherwise it was good not to graze: I started to feel thin again.

I can't tolerate standing and talking to people for long periods of time.  I get tired.  A deep in the joints tired.  Bone tired. Tired.

But when I sat in my chair and worked I did pretty well.  Naturally after being without me for so long my keyboard didn't work right and as I ran off to a meeting a friend of mine fixed up my PC so I could work when I got back.

It was  wonderful to be back among so many friendly faces.  I am loved and what a wonderful thing that is.

It took a while to overcome the tired feeling after I got home.  Mary took me out to pick up some lunch and I ate like a pig.  Foolish me. 

Cancer Free?

I saw my doctor today and the folks doing the clinical trial.

According to the Path Report (which I did not get a copy of) I am cancer free.  From what the doctor said it's cancer free more or less because it can come back.

That's right an encore performance.  I'd better keep up on my insurance premiums.

Well my immune system should be mostly (but not all) back so I shouldn't suffer severe repercussions from infections or a cold should I catch one.  It won't kill me.

We talked to the folks managing the clinical trial and I signed the papers.

I promised among other things that I would not be getting any young women pregnant.  The reason is that lenalidomide is related to thalidomide and may mutate the offspring of my lecherous activity. 

Lenalidomide has a long list of potential side effects and the only one I'm concerned about is a tendency for increased clotting.

I could cast off this mortal coil prematurely if I don't take my aspirin.  There are other side effects that are much like the side effects of chemotherapy.  My white cell count might drop, I might get tired.  A lot.

And then there is the rituximab which has it's own side effects.   Also much like chemotherapy side effects which I have tolerated well.


This is all to keep me from DEATH BY CANCER.  Scary, no? 

I am simply amazed at how much I can live through without keeling over.   I am open eyed and sanguine.

My unique view about death is that it'll happen in it's own good time and it's the cherry on top of the ice cream soda of life.  I don't worry about it because I firmly believe it is the easy part of life's trials.

The best saved for last, so I look forward to it.

I'm more concerned about how my family and friends would take my death - and the only thing I can do about that is stay alive.  So I do, but it's an act of love not fear.

I'm really not concerned about me at all.  I am simply fine.

Well, had the PET scan

Mary dropped me off this morning and I walked down to the basement at the hospital to the place where they put the PET/CT radiology department and I was the first to arrive.  One thing I noticed was that the syringe that injected the radioactive glucose into my arm with was shielded with a metal sheath.

And it's going into my arm, I thought.

I remembered my prior post where I likened myself to a popsicle stick sliding into an enormous mouth.  This time I noticed that the cylinder was not that deep and I was bored so I fell asleep a couple of times and hope I didn't snore.

It was a 25 minute ride and I was happy to be through.  Although I suppose I'll have to endure that silly ride again some day as a form of followup.

It was nice to get it done and over with.  I did not eat breakfast and came home hungry.  I ate and still want more.

Tomorrow I visit the Doctor and plan to go back to work a couple of days a week.  I look forward to it.

Don't eat that breakfast!

Well, I guess I began the day asleep.   So without thinking I ate breakfast and ruined my chances of having a PET scan an hour later.   But I got the CT scan so I'm half done. 

And I can get the PET scan tomorrow.  Bright and early.

Wednesday Mary and I will visit my oncologist again and I presume they will take blood.  I would like to know what my white cell count is because I plan to go to work on Thursday and two days a week thereafter.  Caveat: my white cell count isn't too low. 

We'll have to see how I feel. 

several days after the last cycle

I ventured out for a walk a little after 3:00 today and felt comfortably surrounded by warmth.

Scatterings of dry pine straw and pine cones on the side of the road and the dry heat reminded me of the many hikes Mary and I used to take in California.

I felt weary after walking a block.

As I looked down the road I could see the sky and clouds framed in the trees that arch over the road.  I kept going just to feel the pleasure of being outside able to feel the breeze against me and watch it rustle the leaves and branches surrounding me.

I love the scent of the outdoors.

In total I walked about five blocks although in previous cycles I have arrived at the end feeling much better put together than now.

I was tired and still had to walk back.

The cycles have been over for several days and I am wondering if my immune system is as badly damaged as my stamina.   Is my white cell count normal; or must I wait to get it back?

I guess I'll find out when I get a blood test on Wednesday.

I feel somewhat better although not dramatically.  I seem to have less heartburn although the last couple of days I have had occasional nausea.  I'm also missing those moments when my body is exasperated with sudden tiredness.

My exhaustion is less although it took me hours to recover from my walk today.

The dry mouth is still with me but not as obvious.

ex post facto

It is only Tuesday and technically tomorrow is the last day of this cycle for my infusions; but I'm actually feeling pretty good.  I didn't feel like eating today (although I did) and I still feel stuffed from lunch but I ate dinner anyway.

But I'm not tired. 

I didn't feel exhausted shortly shortly after noon. 

How am I going to sleep tonight if I'm not exhausted?

What if I feel good tomorrow?

all those drugs

Wait a moment, I feel a sneeze coming on.  I wonder if it's a side effect?

R-CHOP is a five drug concoction and then Benadryl comes along with it and a bit later Zofran and over the counter drugs like Tums and Zantac.

I probably missed a couple:  oxycodone because I can't take an OTC like Advil, Tylenol or Aleve because they either screw up my platelets or hide a fever (which could be fatal).  I have a bottle of sleeping pills to help counter the nervy effects of the Prednisone. 

It finally dawned on me that I should be taking much more fiber so I take a couple of fiber capsules through the day and of coarse those wonderful magnesium oxide tablets which are so vital when I need to contain the constipation.

But when I get the runs I'm  never quite sure if it's the chemotherapy or magnesium oxide.

There are some other symptoms, like having to breathe heavy just taking out the garbage or when going for a walk (when I haven't gotten that far); that dry mouth that I've had so often and need for water.  I don't know if these are clearly side effects from the regimen or long term things that I will have to deal with post-chemotherapy.

And those sneezes,  where do they come from?

an evening to remember

It was a very nice day.   I went out to pick up a few things from some stores and drove around in the process.  Another day of romping around town.

It has been warm both yesterday and today, and I will have to haul out my shorts from wherever they have been buried in my closet.  I am looking out our front window at the way the sun and wind combine as I watch the unmowed grass across the street.   The trees on our neighbor's lawn have broken out in full leafed bright green.

Chapel Hill has some very pleasant days in the spring.  

Since my first infusion on New Years Eve until now I have had a steady stream of treatments and I wonder how my body will respond in the weeks ahead as I leave them behind.  I have been physically battered by the drugs in ways that I will not understand until I make my passage through the various side effects and conditions.  I will also be in a clinical trial with either Lenalidomide which is related to Thalidomide or Lenalidomide and Rituximab which is a drug from the list of drugs I have been infused with regularly these past months.

Lenalidomide is taken once a day in the morning and Rituximab is infused every two months.  The trial lasts about a year and is specifically for people who have a very reasonable chance of having the cancer come back.

I begin to feel that my treatements are never ending.

a moment to look back on the week

I am lurching toward what is the end of this last cycle and I pricked my finger today to check my blood sugar (which was a bit lower after a walk of several blocks).  I bled more than I thought I should.

It stopped eventually, but normally all I have to do is press it once with the Kleenex and it will stop bleeding.   That was me before chemo.


I have once or twice had a bleeding problem during a chemo cycle.  They talk about low blood platelets but it's almost alarming to have physical evidence of it.

My most serious complaint this week is that I am tired a lot.  Like now. Or when I'm working.  It's why I don't want to go to the store this afternoon.  I don't like to drive tired. 

Although my stomach is sometimes upset, it's good most of the day and only requires drugs at night.

And I keep reminding myself - this does have an end.