ex post what?

How do you say "after the" as in "after the cancer" in Latin.   I went to an on line dictionary and it basically came back with nothing.  

Ex post pestis?

But I'm not a scholar and I have to come up with some better way to say "what do I do after the cancer?"

I feel like the day is new. Like I just graduated from high school. Like I have to figure out what to do with the rest of my life.

I saw my oncologist today and as I was leaving made an appointment to see him in another three months.  Three months is a wonderful period of time to not see a doctor.  Maybe next time I can wait another three months?

All of the side effects of the revlimid should be over.  I still have a headache, I still tire easily and sometimes I still feel like crap.


But I am cancer free.  What do I do now?

An herbal brew to warm the heart

Back when I was talking to my doctor about funny heart beats he mentioned things like stress and caffeine (and at least one other thing) that could in some way be related to my new peculiarly thumping inner daemon.

Well, my heart. 

Since I couldn't do anything about the small truckload of drugs  that were infused into me that are specifically heart damaging; and the three months that I had been on revlimid also not good for the heart; I decided to try to minimize the caffeine.

Since I am an absolute addict to my favorite coffee the idea of stopping cold was out of the question.  I'd only come back to it after feeling like I have a nail driven into my forehead.

I cut back to one cup in the morning (it is quite strong) and after that I drink herb tea.  This all seems to work to keep my heart from thumping occasionally.   I would think it's not back to being a Swiss watch; but I don't feel any discomfort during the day or into the evening. 

I must have had a lot of caffeine in me. I can really feel the difference.

listen to your heartbeat

Starting Sunday morning I've been listening to my heartbeat.  Off and on.

It doesn't skip  a beat, but every few beats there's one that's a bit more of a thump than it should be.

Kept me awake a little bit last night.

Since it's been going on more than a day I figure it's not going to kill me.  No real discomfort other than the ill timed thumps.  No sweating, no nausea.  Just thump.

I finally decided this morning that I should tell Mary, after all I didn't want to keel over and not have her know what had been going on.     She suggested I call my doctor not the oncologist.

She wasn't terribly concerned since she was familiar with the symptoms.

We called and they wanted me in RIGHT NOW.  Wonder why?

Well, Mary drove me in and read while I was called in to the little room where I would be examined.

There is nothing I find so embarrassing as having my shirt off while someone attaches things to my chest.  I have fat in all the wrong places. Very lumpy.

So my doctor's most ancient nurse dragged a cart with a little machine on it and had me lay down and start attaching the little cups.  I didn't get a good look at them so I think they're cups.   I really don't know what they are.

But she stuck them on while I concentrated on the ceiling.

The test was over very quickly and my shirt was back on and the doctor came in and listened to my heart and explained a few things to me.

The beats were regular, and normal.  He pointed out the parts where the beat starts and that big spike (and I forget what that means) but the gist of it was that those little peaks vary a little bit in regularity.  And beats that take place too far apart & and then too close together cause the thumps (we're talking milliseconds).

He said he had heard a couple of them when he was listening.

It appears that I don't have quite the Swiss watch ticking away in there that I used to.   But it's nothing that I have to worry about.

If it doesn't go away or gets worse I could always have a monitor attached.   I wonder what that would be like?

The last monitor I wore was for reflux disease and a little tube had to be put down one of my nostrils.  The calibrating was done with a much wider tube and gave new meaning to the motto: "up your nose with a rubber hose".  They put the cream to deaden the pain up the nostril that was too small for the hose (deviated septum) and then ran out of time so they put it up my other nostril without any.

It would be attached to me for an extended period of time but my doctor would get good data.

I don't want to do it.

time to reminisce about symptoms come and gone

It's been two and a half weeks (roughly) off the revlimid and some things are working better than before.

My heart, for example, isn't doing hard double thumps in the evening.  Although it was so exciting wondering what would happen next.

The Walkies during the past week show that my muscles and fitness level are improving; but long term recovery is slow.  I am tired by the of the week.

My old familiar headache that feels so much like the cancer headache that started a year ago is still there although I don't have all of the strange neck sensations that I believe revlimid precipitated.

I notice it off and on throughout the day.  Driving home from the store today, for example.  I believe that it would be a pleasant experience for those who like the occasional whip of pain.  Ouch!

The rash has faded, although I did notice a bit of it when I went to the pharmacy this morning and had to be out in the sun and heat for a small while.  But it wasn't much.

I am not as dehydrated as I was on the revlimid, although I still get up three times at night to relieve myself and drink water because I have dry-mouth.  But the dry-mouth isn't as bad.


My stomach is not feeling well in the evening - last night I got up out of bed and took some tums - that seemed to help.

My appetite isn't what it once was and a bowl of cereal will last me all morning.  I am eating more starches and grain products so my constipation is not a problem.  My blood sugars are high but not so much as to cause immediate concern.  I measured 146 the other morning and I will rectify that but not now.

I feel good in the morning and enjoy my work and dorking with my Ubuntu Linux system which I put on an old laptop recently.  I don't feel so good at night however.  Part of it seems to be stomach upset but I believe there is a mental part too (although I can't put my finger on what).

When I look in the mirror or try on almost any pair of pants I notice  how much of a gut I have gained.  Thus the exercise.  It's a little difficult to do what I once did because I don't have the stamina and literally don't have the stomach for it.

So I don't feel crappy as much as I used to, but it hasn't gone away.   And since the cancer is gone, I have the more mundane tasks of trying to get out of the shape I got into from the various amounts of prednisone  and chemotherapy.

I won't even discuss where my sexual interests have gone.  I put them somewhere, and I haven't been able to find them. 

My employers have been very good to me but one of these days they may want me back in the office, and I know that I would not be up to it right now.

It may be a while until I am up to it.

another day for that delightful state of mind

Although I actually did get some work done today (and spent some hobby time with my favorite Linux box) I had at least several hours of pleasant incapacity sometime around noon.   My guess is that it's late in the week and although I didn't walk far today I'm not able to sustain peak periods very long.   They wear on me over a period of days; where if I were well it would just be hours.

So I was probably just tired.  Mary took me to get some lunch and later I got busy again.  But while I was out I didn't have to think about any of the details that I normally do.

I am almost back to feeling normal - at least during the day.  If I focus on typing (like now) in the evening I just develop a  headache.  Reading isn't quite so bad.

I took another walk..

At the moment I'm a bit exhausted, so I don't think I'm over all the drugs I've been ingesting (in one form or another) but I am getting better.

I took another walk although I was a little more tired today afterwards than yesterday.  Maybe I'll skip tomorrow.

Usually in the morning I have a little "chemo brain" where I exist in the soft fuzzy presence of the kind of thoughtlessness that some mystics strive for.   I get mine by prescription but what does that matter?

At the moment I don't feel well, but earlier I was feeling great!  If only it would last.  Not much in the way of headache today but my lungs feel troubled.  Can't really tell if it's the last dying echo of revlimid or simple allergies.

I do after all live in "allergy heaven". 

Walkies (from Training Dogs the Woodhouse Way)

It was a bit warm outside at noon, but I decided to walk anyway.  The house is air conditioned and I was cold. 

The walk was my usual four block hike to Knob Court and it was uneventful.  I didn't really get tired until the walk was over.   Also, since I'm off the glimepiride my blood sugar stayed up.   Well, as much as could be expected since a walk like this will usually drop it a bit anyway.

I had relatively mild headaches today and I'm wondering how much eye strain is contributing.  My speculation is that the drugs affect the muscles in the eye. 

Or I'm just getting old, maybe.

Is it Chemistry, or Stress?

I remember struggling to walk when I was three or four sessions into the R-CHOP infusions.  Sometimes I would walk a block, sometimes two.  When I approached the end of the cycle I would begin to recover and would actually make it up a hill or two and wind up four blocks distance.

My goal would be to make it to Knob Court and back again.  Whether I made it or not, the idea was to try.

I walked it today with no stressing and straining, a brief rest to drink after the first rise, and no extra or painful effort at all.  I was a little surprised that I made it that far that easily.

I also felt a headache coming on as I started my way back. In some ways I am starting to feel normal in the AM but I do get headaches in the PM.  I'm wondering if the headache is sun-related (I forgot to put a hat on); because of the physical stress of the walk or the fact that it is just that time of day?

Well this is good progress and I am looking forward to more walks as the weather cools off. 

And it will be nice when the headaches go away.

Borrowed Time?

Every few days off the revlimid I notice some change in feeling of well being or alertness that I start to look forward to a week, perhaps two when the side effects will diminish more. It's been a rather long road although I've forgotten the thousand and one plagues from the beginning of this until now.   Thank goodness for a shallow memory.

I was in the middle of flossing my teeth when I remembered the scent of saline solution after it's been pushed into my port.  I didn't remember the hospital just the sensation and the feeling my sinuses had.  I almost smelled it.   Not quite a headache and not unlike smelling the deathbed room after visiting someone who is dying.

It occurred to me that I am perhaps on borrowed  time.  My tumors could have killed me, but I had a reprieve.  And it occurred to me that I have borrowed quite a bit of time already.   My thyroid stopped working right when I was about 45 and I came to the point where I didn't want to go on anymore.   I was about 50 when my appendix came apart in the instruments of the surgeons.    I am a diabetic.

 I am already quite far in debt in the time department.


I have headaches almost every day.  Actually, I think it is every day.  It's the drugs; one or many working in concert.   My heart thumps funny almost each night which started with the revlimid.  When I get tired, I feel weak and my body feels awful.

I should feel that my life has become some vast black pit that I am looking into but I am determined to make it through this and will get better. I will simply borrow more time.

Have I been looking for perfection?

Once upon a time I depended on drugs to keep me alive; or setting things up so I could stay alive.

And I still take levoxyl (talk about being a druggie). 

Then came revlimid with it's various and many discomforts.   But I'm glad I was on it for 3 months, if only because it gave me a bit more treatment to at least potentially keep the lymphoma at bay.  And it redirected my attention from the disease to the side effects.

Better to be directed to think about the petty pain and discomfort than to dwell on the really big and potentially fatal question of "will this cancer kill me"?

Fortunately for me, although I am off the revlimid I still get headaches, my neck is still stiff and later in the day, I still feel like crap.

It's heartwarming to know that I have these many small things to occupy my time instead of the one big question:  will this kill me?

That was Monday - this is Wednesday!

I am still relishing my freedom from the revlimid.

This morning I woke up late after having a very deep sleep.  I started working at about 8:00 and occasionally took a break for a snack, lunch, shower or biological necessity.   But I felt so much better than I had even yesterday.

It is as though only a day ago I had a latex membrane between me and my physical feelings.  Today I feel more like me; more in touch with my body.  More alert; more intuitive.  More functional. 

It took me until about 1:00 to notice the drain that work had on me and by 2:00 I had a headache and took a break.   Resting helped and then I went back to work and finished a small project.  But then I felt worse.

While I was feeling good this morning I had no trouble with "chemo brain" like I had yesterday; and the day before.

There will be no revlimid tonight.  I look forward to tomorrow.

I dropped out of the study

I saw my oncologist and clinical trial coordinator nurse and asked to be removed from the study. 

They both were very supportive. 


I will no longer be treated with revlimid, but I will still be followed for the study so we will keep in touch.  They're all such nice people it'll be fun.

My concern was to stop the treatment before it really did some damage.   I was feeling terrible with or without the drug.  As I signed the papers requesting my withdrawal I felt an overwhelming sense of relief as though weight had been lifted from me. 

It is wonderful to feel that sense of optimism and hope which I have not been able to feel for so long.  Rather I've been hunkered down throughout the chemotherapy and then the revlimid.  I had good days and bad days but never an optimistic sense that I really had a future.

It's such a nice day!

Today is rather nice compared with yesterday and the day before, and the day before that and the day before that.  I was able to sleep as late as I liked and did not need to go fetch and carry a great deal; I've also been able to nap.

No disturbing dreams.

I'm not feeling sore muscles accentuated by the revlimid.

At the moment I don't have a headache either and my neck isn't as stiff as it was just a couple of days ago. 

My last revlimid was on Tuesday night so it has taken four days for the side effects to recede to the point where I feel well.

What's it Gonna Be?

Since I've had a busy week getting stuck, stabbed and scanned.  I thought I would take this brief weekend respite to consider how I'm doing and what's next.

If you're one of my regulars you probably know that the MRI scan of my head came out clear of any cancer.  I don't have a brain tumor.

The cerebral spinal fluid taken during the lumbar puncture on Wednesday was clear as well.

I will find out the result of the Friday's CT scan on Monday when I see my oncologist.

I'm starting to feel that I've had a bit too much of this.  What's the point of telling my oncologist anything if he'll just have me tested and poked;  and then find out I'm OK?

He's doing this to ensure that I don't have a brain tumor or something going on in my spine because one (perhaps more) tumors were along the spinal column to the point of displacing some of it.

I saw this on the CT of my neck taken in November 2009 - little chunks of my C2 vertebra gone missing.  They almost looked like bites taken out of it.   That scan was taken about a month and a half before my first R-CHOP chemotherapy session so there is no easy way to tell if the tumor made it all the way to the spinal canal.

So he ruled out brain tumor as a possibility.   Which leaves revlimid responsible for my headaches.

I had a nap this afternoon and I feel better now but the revlimid is getting more difficult to tolerate.

After I went grocery shopping today my neck and shoulders hurt although my headache seemed to be gone.   I believe that I experienced depression this last week after going off the drug.  It is an uncomfortable feeling.   

Were my nightmares last night from the revlimid or from being off the revlimid?

I'm getting used to the usual side effects such as rash, diarrhea and constipation and the various discomforts that go along with them.

I'm tired a lot and I just ignore it and do what I have to do.  I work while I'm sleepy or fatigued.

But the muscle pain in my neck was  so reminiscent of what I went through with the tumor that I find it very uncomfortable.

The last few days of the part of the cycle where I am on the drug I feel lightheaded and mentally confused.   I also felt as though I had caught a cold - at least my chest felt that way.   I felt sick.
 
When I go off the drug every three weeks for a one week break I have uncomfortable sensations in my body that I take to be withdrawal symptoms.  My metabolism seems slow; my skin is dry and there are patches on my fingers where the top layer of skin has fallen off.

The plus side of revlimid is it may be preventing recurrence of my many tumors.  The downside is considerable discomfort.


When does the one outweigh the other?

CT today and I feel strange

It is after all normal not to feel well every now and then; especially when you start the day with no breakfast. 

And I am not feeling well today.  This is the second drug hiatus where I've felt pretty bad off the drug and I am beginning to wonder if I'm having withdrawal symptoms.

The contrast that I drank was not that bad.  Diet Pepsi with something special mixed in to make things stand out. 

You may recall that the MRI was just my head; this CT was just for chest, abdomen and pelvis. 

Which means that my neck was skipped.  You may recall I've been having stiff and painful neck muscles as well as headaches that seem to originate in the neck.   Side effects of the revlimid.

Every now and then I get the feeling that revlimid is a dangerous drug and I take it with risk that I don't know how to estimate.  I looked in the consent form at the list of side effects and muscle pain and headache show up in 3-20 percent of patients.  For the lucky few (less than 3 percent) we have chest pain, heart attack, congestive heart failure,  blood pressure and flow issues.

Need I say more?

methinks I need a longer needle

I paraphrase the resident who took my spinal fluid sample.   He actually asked me if I knew whether the other folks who had done this had used a longer needle.  I didn't.

Later he said a longer needle also draws less fluid because it is narrower. I was kind of hoping it wouldn't hurt as much.

It is enlightening how each of these lumbar punctures leads me to a new and deeper understanding of trepidation and angst.     I almost feel like I'm alone with God and He might just bring the ax down on me.

Maybe it's the preparation - the woman who tells me to unbuckle my belt, undo my trouser top and unzip a bit.   When I was face down on the table she adjusted my trousers and undershorts down a bit and then tucked sheet into them and pulled my t-shirt up to mid chest level.  

I was on a long metal table with a thin mat with a sheet over it.  I braced my feet against the foot stop at the bottom and my head was quite close to the top.  

My embarrassment only lasted long enough for me to think about what was going to happen next;  I clasped the pillow I was leaning against and worked it between the thumb and forefinger of my right hand.  Squeezing hard.

I did that at several points during the procedure.

I've actually had five of these "punctures" now,  I should be used to it.  Blase.

This one actually took less time and was less dramatic because the resident only had to get fluid out and I was well hydrated. 

My oncologist didn't have to show up with a vial of drug to inject.  That saved half an hour right there.

I doubt that they will find anything in the sample.

If they do find something I will be shocked and horrified.  It will mean that I have something not quite benign in a place where it is difficult to kill. It will mean a future of successive spinal infusions.  Perhaps other infusions, just for fun.

Let's hope not.

A little more spinal fluid please, I wonder how it tastes?

At 9:00 AM tomorrow I will be blessed with the pleasure of another lumbar puncture to remove a bit of spinal fluid.  

My doctor wants to know if there are METS.

This is in all ways rational because I still have headaches and the MRI was negative.  Also one of the tumors was eating into my C2 vertebra and others were along the spine but further down so it is possible that I have metastasis in the spinal canal.

I think I'm having a side effect of the revlimid.  But considering my track record for self diagnosis, I will do as my doctor wishes.

CT on Friday.

Finally, at the beach!

It's hot and muggy at the moment, but I think it's wonderful.

I have dim memories of a time over six months ago when my prospects were not so good.  Constant pain occasionally muted by skelaxin or carisoprodol and aleve to the point where I was truly dulled.  Unable to sleep in a bed and finally after a surgical procedure to get a sample of the tumor in my neck unable to talk in a normal voice.  Daffy or Donald Duck come to mind.

While I was probably fantasizing more about being down at the beach, the deck does very nicely.  I can see the ocean, all the people on the beach and the scattered umbrellas and tarps.  Everyone it seems loves the sun and keeps to the shade

I can hear the din of the waves in the distance and could even take a stroll out there if I wanted to.

Of course I want to keep to the shade because of the revlimid which I have been able to take each night and fortunately not missed once.  My rash has a direct sun sensitivity feature.

Speaking of my rash, it appears to be on my legs as well as on my forearms. One of the little red spots looks big enough to be a bug bite. But other than size I can't tell the difference.

the wonders of modern diagnostic equipment

I believe I only flinched once when I was deep inside the entrails of the MRI machine.  After all, it was only doing a head shot.

Headache? Cancer patient? Check for brain tumor!

Well I don't have one!

There is of course the fear and trepidation as I approach the Great Machine that curiously has a hole in it the same size as my front loading automatic clothes washer; and I immediately have visions of my head being inside of it as the drum begins to rotate.

I am imagining the staples that were put in me to close off my intestine during an appendectomy back in the previous century will come flying out of my abdomen.    I was assured by the tech that this would not happen.

The technical staff informed me that I was in for a two stage experience first they would scan my head and then they would inject dye (Gadolinium almost sounds like linoleum) and scan it again.

My oncologist had asked me if I was claustrophobic.  I was about to understand why.

A small specially designed white plastic cage was placed over my face as I lay there and I felt bracers pushing against the sides of my cheeks to keep my face and head in position while I was in the machine.

There was a squeak; a repetitive squeak as though some old and decrepit machine had a wheel about to fall off.

But the loudest memory I have is of a door buzzer going off right next to my ear.


Somehow they managed to get the door buzzer to vary it's frequency; but not enough to make it melodic.

Oddly, they had put quaint little ear plugs in my ears just before they put the cage over my face and those stupid little things did no good at all.

Between the buzzers and my face being held in place I began to feel the tickle of post nasal drip; that urge to cough and the simultaneous need not to.  I was scolding my self with a "don't screw this up" knowing that to have a problem is to go through this all over again.

My opinion (and understand I have no medical background) is that my neck muscles are in a state of Post Traumatic Stress Disorder from the tumor that had somehow inserted itself in their midst. They are still stiff and occasionally I notice it.  I think the revlimid helps them to remember and I get headache and sensations just like before.

Peculiar and wonderful stuff this revlimid.  I wonder what torture it will come up with next week?

It's the revlimid stupid!

My oncologist thinks my headaches are directly from the revlimid.  Considering how much my muscles were abused by the tumor that was deep in my neck I can see that. 

I have a high risk because of the number of tumors I had but the chemotherapy was so effective that I probably don't have a problem right now. 

And the revlimid may be helping me.

I am getting an MRI of the head and neck tomorrow night.  And my oncologist wants a little spinal fluid to analyze and we know how they get that out. Ouch.

When I saw him I had been out and in the heat and humidity and my rash started to flame up.  One of the nurses commented that my face looked all red. The nurse coordinator for the study noted the bright red little spots on my arms.

It's not the measles or chickenpox but it's almost as good.  I looked in the mirror after I got home and I thought there was more on my forehead and a some on my face.  I haven't seen any on my face before.

I'll know that I do or don't have a tumor by the time I go to the beach.  I can take aleve when I get there.  Considering that these headaches feel just like the headaches I had before my tumor was diagnosed, I will want to know.

I could see myself wallowing in the prospect of new cancer with the glee only a true self pitying hypochondriac can appreciate.  

Instead I'll be enjoying myself.

I think my doctor is considering bouncing me from the study.  Today he mentioned that with the rash, nausea, headache and generally feeling crappy I may not want to continue.

If I had half a brain I'd take him up on the offer.   I'm on cycle 3 out of 12 and they seem cumulative. So how bad am I going to feel in a month or two?

Or six months from now?

Whoops

Well I have noticed a mild headache that doesn't feel good.  It's not the same headache that I had last week but it's just a little annoying.  Seems to affect my neck.

It's intermittent but persists and I had hoped that it would go away but it hasn't.  So I sent an email to the nurse coordinator of the study tonight and I expect to get some communication from her tomorrow.

I've also been feeling more ill over the last several days.  I went for a walk today and only got a block and a half.  My endurance is less than it was.

I just hope that this doesn't screw up my vacation next week!

another day without a headache

I stopped taking the zofran and aleve on Friday and the headache and nausea are still gone. 

I've been on a glimepiride hiatus since Wednesday when I saw the study coordinator nurse and my oncologist.  Now that I think of it I recall several instances of uncomfortably low blood sugar over the past month.

My blood sugar this morning was 118, yesterday it was 117 so I seem to be  doing OK so far.

It looks to me like my headache might have been the result of low blood sugar.  I'm just really twitchy about head and neck pain after my experience over the last year.

 

ex post painful

Since I've been painfully paranoid about my recent round of headache and nausea I thought that I should try to take stock today and find out how bad they still were; so I stopped the Aleve and Zofran.

And although I would feel twinges of head or neck pain it was fleeting and nothing that I would take a pain med for.

Time to enter this into my log.

I don't have a good explanation for why I would have several days of not feeling well, but it could very well be blood sugars. 

All I really want is for the pain to go away.  And it actually may have.  I'll know better over the course of the next several days.

I should probably take some aleve to the beach anyway.

not that I'm a little paranoid about this?

Mary suggested I start a log about my headaches / nausea which I can safely say is much less of a problem with the right drugs: aleve and zofran.

And my log details the activities of the past few days: the arrival of the pain and nausea on Monday afternoon after I didn't feel too good most of the day. The fact that I was very tired.  The morning headaches Tuesday and Wednesday and the decision to go with pain medication and anti-nausea drug after.

And I don't feel half bad drugged up;  plus I'm back on Revlimid now: a fine concoction for the well diseased.

The more air brainy symptoms of revlimid don't seem to show up anymore and I do have to wonder why although I felt a little spacey on Monday when I had been off the revlimid most of a week .  Half of me wonders if I had withdrawal symptoms although the other half doubts it.

I didn't have a headache this morning and didn't expect one because I took an aleve before I went to bed and that lasted into this morning when I took another and a zofran.   I took drugs when my head started to hurt.

I will be sure to take aleve and zofran with me to the beach.  Maybe I should grab my old bottle of skelaxin and take that too; just in case my neck muscles get jumpy.

have my little friends come back to me?

Like so many things in the world pain and nausea can be interpreted so many ways it is impossible to say for certain what causes them.  Whatever I think doesn't mean a lot without the proper medical opinion to back it up.

Then action follows if action is possible.

So if I am having headache along with some nausea it may or may not be a new growth of so many little friends.  I should say new friends; the old friends are dead.

Those little blighters who kept me up with headache and neck pain and had to be biopsied to determine exactly who they were and how to kill them.  They may have left little seeds to grow in the garden of my body again.

The nurse I talked to today thought it was a blood sugar issue because I had a really bad headache this morning.  She thinks overnight blood sugar are a good possibility because it's a long time between dinner and breakfast.

Its a reasonable suspicion and one that I can test for over the course of the next several days.

My oncologist says that since I've been feeling this way for days it's probably not low blood sugar.


He wants me to notify him if the pain and nausea worsens.  Or see where it is when I see him next on August 9th.

Since I've been wrong about such things in the past I will hold my opinion until it's confirmed with some test.  It's nice to know that if the pain gets bad enough there will be tests.

And a CT scan on August 6th in any case.

I slept a lot today, I hope I can sleep tonight.

I woke up and sent an email in to work and then did a little web surfing while the TV in the background gave me a headache.  Normally I would have emailed my supervisor with a project status report since we usually have the  project status meetings on Tuesday. Today I just didn't feel up to it - I just sent a note to everybody affected by my work or other developers that I would be out sick today.

I napped on the couch from 9:00 AM to about 1:00 in the afternoon.   I've been gradually feeling better since.

is my feeling crappy a side effect?

The last day I took revlimid was last Tuesday -  but I've had a certain lassitude today and I don't feel so well at the moment.   For a couple of minutes I thought maybe flu like symptoms means I caught something and it's taken a few days for my body to go postal with it.

But after a brief thought (because too much thought would just hurt) I think it's just another silly little side effect.

I'm wondering if it isn't a withdrawal symptom from not having the drug for almost a week which would mean that I'm addicted to revlimid.  Does that mean I'm addicted to a dangerous drug?

Is that silly, or justifiable insanity?

Mary want's me to not work tomorrow and just rest.  I think I may need to.

PS the rash is improving.

all about a few hairs

Just to let you know (as anyone who sees me knows) my hair is growing back, although it looks like a crew cut.

You wouldn't know I had just been bald.  And my beard is coming back.

It is a wonderful thing, although being without hair made so many things so low maintenance. 


The rash seems to be improving a bit.  I apply a cortisone ointment and that seems to be helping.

Maybe not being on revlimid 4 days is also helping?

I will begin cycle 3 on Wednesday and that will see me into August.  I will be taking revlimid while I am at the beach.  Speaking of cycles and such I will have a CT scan on August 6th and talk to my doctor on the 9th about it.

Am I cancer free?

I will start taking the revlimid again on the 11th of August.

Rashes as a side effect for this wonderful (yes that was sarcasm) drug are common.

When will I ever learn that I will get side effects just like anyone else?  I have some bizarre idea that I'm going to waltz through this with no problems! 

Here I am over 60 and I have not mentally evolved past my late teens.   Although that does beg the question: why bother now?

silly little side effect

Well, I just visited my oncologist yesterday morning and he thinks my rash is a revlimid side effect.

He thinks I started to get better not because I was taking the acyclovir but because I was off the revlimid and got better then. 

I would suppose that I shall have to go back and look at my calendar and check the dates on that to see when the acyclovir and time off of revlimid overlap.


My white cell count was 3.0 (and that is after 3 weeks of revlimid) so it's a little better.

One problem I noticed is that trips to the doctor require a certain degree of energy and I come back home and am tired for the rest of the day.

On to the rest and recouperation

I just downed the last pill of revlimid in my little white plastic bottle with a sense of triumph and relief.

Triumph because I made it through another three weeks of this stuff without anything too horrible happening and relief because tomorrow I will begin to feel normal.

I sent the clinical trial nurse coordinator an email last Friday detailing my rash and today received phone calls from folks at the hospital informing me of my appointment at 8:30 tomorrow morning so the doctor can look at it and gauge what to do about it.

My rash doesn't seem that bad to me, but it's been worse before and it's just starting up again now, so in another week or so it could conceivably be a rip roaring monster; but I feel OK now. 

counting down the pills

After taking my revlimid this evening I counted four pills left in the bottle.  Starting on Wednesday I will begin my week of "rest and recuperation" that is part of each 28 day cycle.   I will have successfully completed the three week "pill popping" part.

Considering that I've gone through one of these "rest periods" already I know I'm going to be feeling great.

One of the reasons I'm looking forward to having a wee bit more of an immune system is that I have a rash on my forearms and a bit on my ankles and lower legs.

Sounds familiar doesn't it?

Yes it's the same viral rash that I had before the two separate rounds of acyclovir.

The difference is my side isn't hurting now, but my forearms feel a prickly sensitivity much like the prickly sensitivity I felt in my side before it developed an uncomfortable burned feeling.

Yup, it's the same, just different.  Ouch!

smooth sailing today

Not a lot in the way of side effects today, just the usual dry mouth and dehydration.  I keep a jug of water handy when it gets out of control.

I took a bit of a walk this afternoon - hadn't walked in weeks - so I decided to go only a few blocks; but enough to get me started.

The last time I walked I was coming down with a serious rash and that must have been a month or so ago.

I have no rash now, no sensitive skin and no bloodshot eye. 

Aren't I lucky?

a day without side effects is like a day without ...

I got up early today and came downstairs to log into work and spent the day working on various projects.  No noticeable strange feelings or anything.

It's been a pretty uneventful day and it was easy to put in eight hours.

I had a brief spat of exhaustion at about 4:00 but I got up and walked around for a bit and it seemed to abate.

Fortunately I will be able to work straight through the week since I don't have any doctor appointments scheduled.

Thank goodness for that!

bafflement of side effects

Did I just have a day of diarrhea amidst days of constipation?

Here I am taking a drug that will do funny things to my thyroid and I'm wondering did it spike my T4 level so high that I got the runs or is it just the drug?

At least it wasn't the vicious diarrhea of R-CHOP fame which tends to be fairly insistent.


It was almost as if I had taken too much magnesium but I hadn't.  

It seems that when I get enough sleep the more bizarre nervous system side effects go away.   I say this because I took Friday off and had plenty of nap time.   And I don't feel weak or have any of those funny tingly sensations.

On another note, it is Sunday and I have survived my sixty first birthday by several days.  Am I surprised!

revlimidified

I've been a little over a week into the "take the pill" part of the second cycle of the clinical trial.  I can't wait until it's over. 

Revlimid gives me the strangest side effectual sensations: tired; strange feelings of weakness that I eventually recover from; and the odd sensation that leaves me to conclude that there could be a street value in what I take at absolutely no cost.

At the moment I'm feeling a bit like I had too much to drink last night. 

My difficulty is that I find it easy to forget what the side effects feel like and when they are made up of odd sensations, like my skin being prickly, they are hard to describe or quantify.    I enjoy them anyway, at least they provide a new surprise every few days.

Something to keep me entertained.  If a little strangely.

treating the eyeball

As you may have noticed from my blog posts I have an infected eye.

Wonderful you say but how did I manage that? 

Well, my eye gets dry in the evening like a dehydrated alcoholic and crusts over after I go to bed.  I have difficulty pulling the lids apart in the morning.  Although Visine drops in the evening prevents the worst of the dryness, my eye is red and mean looking.   I believe it is called "pink eye".

This all started sometime in my last or second to the last R-CHOP infusion (think dehydration and punk immune system) and I thought that it  would go away.  And it did come and go and if I didn't bother to pull back the lid of my eye I wouldn't notice it so much.

But it was still there and diseased. 

My eye managed to get better while I was on Acyclovir for my other condition: a rash and painful skin irritation (not in the same spots).   But it came back.

So Friday I decided to call up for an appointment at my doctors office and saw another doctor and am now taking 5 400 mg tablets a day (I had been taking 3 on the last go round).  I also was prescribed anti-bacterial eye drops that I take every few hours.

I have an appointment with an ophthalmologist for Monday.

oh the immunomodulation of it all

Today I saw my oncologist and the nurse coordinator for the clinical trial that I am on.  I saw my family doctor yesterday and I have had enough of doctors.   I am thankful that I will not be seeing my oncologist (or anybody else if I can help it) for another month.

I have my new supply of revlimid which I will be taking (one 25mg pill) once a day.   It is classed as an immunomodulator which means that it either suppresses or stimulates the immune system.   Considering those funny little numbers that I asked my family doctor to explain to me yesterday I would say it is the first of those, but if it actually helps me avoid a recurrence of cancer then I suppose it could be the second.

The confusion of it all is quite stimulating.

I have had a week of no revlimid and I am so looking forward to the dry mouth, constipation and immunomodulated discomfort.

Contemplations of Blood Work

I saw my family doctor today and showed him my lab work to obtain an English translation of what was obviously an obscure accounting of hematological ledger domain. 

Although my white cell count was knocked down to 2.3 from 3.9 (normal is 4.5-11) it then rose to 2.7 before beginning to bounce down gently to 2.6.  The important conclusion to draw is that it didn't crash and actually went up after dipping low.

Not great, but not terrible either.

My thyroid numbers turned out to be normal; in spite of my peeling, and flaking dry skin.    My understanding of this is that my T4 was high, TSH was low meaning I had lot's of T4 which is most of what the thyroid produces.  But eventually it became normal.

And to think I was feeling just like I had a lousy thyroid. 

I was a little anemic.  Platelets were good.  Nothing to indicate I should disabuse myself of the revlimid.

Speaking of disabuse, my one red eye is really bothering me; I'm going to bed.

a day of rest and recouperation

Each cycle of the clinical trial is a three weeks on and one week off affair starting on Wednesdays.  And I am in about the middle of the week off of cycle one.

I have perhaps only a slight rash on my arms, I wasn't able to see any on my legs and my side feels normal.   But the acyclovir runs out today so we shall see what I feel like in a few days.


I have not sent the reports from my blood work to my family doctor yet since he is on vacation this week. But since I had such low white cell (and other) counts I thought he would be interested in looking at them. 

Not to mention the funky TSH and T4 values.

I took some extra levoxyl over the last few days and my finger (and some spots on my thumb) are starting to heal.

I am off the pain med until I start to hurt from one thing or another again.  I can finally get a normal nights sleep.

bleeding into a tube for science

My port worked pretty well today.  Mary says it's because I've been hydrating for the last few days; and that could be true.  It's been (I believe) three weeks since that side of the port was dosed with TPA and flushed.  But it worked which made the blood draw much easier.

So I had a pleasant conversation with the nurse as she put a needle into my port through my skin.  I wonder if her being pleasant had anything to do with my not feeling quite so much pain as the needle went in.  Or maybe it was the residual pain medication in my body.


But we talked and eventually got on the subject of the clinical trial and side effects; and I looked down at my hand.  I had noticed that the top layer of skin had peeled off a fairly large part of one of my fingers showing the underside layers which look more red and raw.  

She was going to call one of the clinical trial coordinators about the blood tests and said she would mention my finger.   I said I would be waiting for the initial results such as the blood counts.

I waited around after the blood draw to meet with one of the coordinators of the clinical trial and receive copies of some of the old lab reports and a hard copy of tests that could be done promptly on today's sample.

Ray was nice enough to draw my attention to the TSH and T4 tests which indicated that the Revlimid may have been chewing on my thyroid.  My skinned finger confirmed that. 

No wonder I've been so sluggish and spacey.

The blood tests are illuminating: my white cell count was 3.9 four weeks after my last infusion and I expected it to get better, but on the revlimid it has been 2.3,2.7 and today 2.6.  Normal is 4.5 to 11.

Some of the other immune system related counts were low as well and it occurs to me that I may have to spend the next year with my immune system compromised. 

This will certainly put a crimp in the carousing I had planned on doing in the local student bars.

the rash seems to be going away

It looks like my rash is less than it was.  And my side doesn't hurt as much either. My eye is looking normal too.

It is always nice to feel the relief of subsiding irritation and pain. 

I put in a long day at work today - I logged in at 7:30 this morning and just logged off a few minutes ago at about 8:00.  Got done what I wanted to get done though.

When I get busy it's difficult to take my pills when I should.  I just took my acyclovir and I should have taken it 5 hours ago.   I took my revlimid two hours late.  



Tomorrow I'm scheduled for a blood draw and today is day 21 in the cycle so for the next week I don't have to take any revlimid.  Whoopee! 


I wonder if my immune system will recover during the week?

the acyclovir works on my eye...

I was somewhat relieved to find that I could see things in focus with my right eye this morning.  For the many weeks I have had a good deal of sludge in my eye but it works better now.  It has lost that bloodshot look too. 

I am pleased by this side effect of the anti-viral.

But I still have a rash and my side still hurts; it may not be as bad as before but I am a very poor judge of that kind of thing.

Sometime things feel better, then they don't.  The imponderables of being diseased.

here a pill, there a pill, everywhere...

Once upon a time I only had to remember to take my levoxyl first thing in the morning.  Early enough so I could wait an hour before breakfast.  Levoxyl is a synthetic thyroid hormone that keeps my metabolic rate high enough so I do not simply become slug like.  If I eat breakfast too soon it can be absorbed by the food and pass through my system without doing me any good.

Occasionally I read about the relationship between such drugs and insulin resistance and after much dieting and exercise I started taking metformin with meals for my type two diabetes.   I recently added glimepiride because my blood sugars went ballistic while I was on prednisone during R-CHOP therapy for my lymphoma. 

I feel like one of those jugglers who starts tossing one thing in the air and then adds another and another and another.

Back when I was a young lad in middle age my doctor put me on an aspirin regimen.  I fell off the wagon several years later after emergency surgery when I had a conversation with the surgeon and he said that I had bled a good deal during the operation.

Well revlimid has some potentially fatal side effects related to blood clots and so I am back taking at least one aspirin a day to ward them off.

It goes without saying that to continue to participate in the clinical trial I must take the revlimid; at least in the three weeks in each cycle that I am scheduled to.

Which brings me to the last of what I think are the required drugs the Acyclovir which I take three times a day for what appears to be a viral infection which causes a rash and some pain on the surface of my skin.

To deal with my sinus problems (which are many) I have a bottle of flonase which I squirt (2 times) up my nose each evening. I also take a 24 hour antihistamine and a singulair tablet.

At my age I am naturally constipated but especially so on the revlimid so I take an "as needed" dose of magnesium and fiber capsules.  Obviously (to me) I haven't been taking enough of these because I am still constipated.

The magnesium may also help with healing a compression fracture that I have at my L-4 vertebra.

Because of the pain on or in my side (sometimes I can't tell which) that feels much like a bad sunburn,  I take a serious pain pill at night shortly before I go to bed.   Since it has such an impact on my ability to think I only take it to help me sleep (so I don't roll over on my side and suddenly wake up in pain).

If I have stomach upset from the revlimid (the heartburn from the R-CHOP is going away) I have some tums and zantac.

These are the drugs I am taking now, I have stopped taking the muscle relaxants (Skelaxin and Soma) that I had to take to stop the spasms in my neck muscles; the 4 Aleve each day for the headache caused by the tumor pushing up against my neck muscles.   And the various pain medicines I took to control the pain after surgery on my throat to biopsy my tumor.

Speaking of drugs I have not had any alcoholic beverage since two glasses of wine on Thanksgiving last year when Mary and I went out to lunch at the Irregardless Cafe in Raleigh.

Life might be difficult at times, but at least it's well medicated.

I always wash my eye out in the morning

It would make sense if I were a former sufferer of chicken pox; then I might have shingles.  Instead I have some unnamed probably viral disease that resembles shingles.

Speaking of which the rash seems to be extending up both arms and both legs.  The swath of skin that feels sunburned is still feeling that way but it still doesn't have a rash.

Enigmatic diseases are annoying.  But I can trust my right eye to have something plain and ordinary - pink eye.  I think that's what it's called.   This is not directly from the revlimid; but was developed in my last cycle of R-CHOP chemotherapy during the deeply dehydrated days.

So this morning I washed it out with some warm water; just after I got out of bed until I could see clearly through it.  That's probably something I should do every day.

the end of the week and what's that little itch?

After experiencing the vicissitudes of R-CHOP and somehow coming out of it feeling bright, cheerful and ready for more; I am suffering the decrepitude of chemo-lite: revlimid.

My arms have started to itch; and I'm afraid that if I went for a walk my ankles would itch as well. At least I'm taking Acyclovir which should help if all this is some virus let in by my asleep-at-the-switch immune system.

My body is starting to itch - different parts itching in concert.  As though they were contesting to discomfort me.

The pain med does well against the pain, but have they got any anti-itch oral medicine?

 

feeling better already, but what is it?

Well, what is it?

The pain - which seems to be on my skin wraps around from the upper-left quadrant of my abdomen along the line of my diaphragm almost to my spine.   The amount of pain varies from day to day and it had been quite severe.  It isn't so bad today.

Probably because I saw my doctor.  Does the magic of the word placebo come to mind?

I do have a wee bit of something to ease the pain, but I can't use it during the day because I have to work.  But it will keep me from being in pain when I go to bed and that is a very nice thing.

And rolling over on my side has been "surprising" sometimes while I've been trying to fall asleep.  

So I have an anti-viral prescription and of course the pain reliever.  Presumably this "condition" is the result of the revlimid (my doctor said so) I would assume that it's not that the revlimid does it directly, but that a virus that my immune system would normally deal with becomes a problem (this problem) because the drug is an "immunomodulatory agent" whatever that is.

Which reminds me, it's time to take my revlimid.

I'll find out tomorrow?

Well, the swath of pain from my abdomen around to my back is about the same today.  I'll see my oncologist about it tomorrow.

When my side/abdomen first flared up (or at least when I noticed it) my thoughts were that it was some deep problem with my spleen or something.  Although there wasn't any noticeable pain deep in my side I might have felt something in there.

Now I'm thinking something released by the decrepitude of my immune system.  It feels like sunburn on my skin.

I don't think I'll be coming off the revlimid.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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?

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.

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.

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".

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.

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. 

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.

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.

ibid: what does that mean anyway?

I'm about where I was yesterday. 

Because of the glimepiride I'm able to keep my blood sugars reasonable while I've been taking the prednisone.  Only one more prednisone stint to go thank goodness. 

Now my major symptom is heart burn. All those little cells that line my gut have been R-CHOP'd to death.  They don't protect me from my own stomach acid anymore. All good things burn even the tomato basil soup that tasted so good.

My sinuses are a bit of a problem too, it seems they have gotten sensitive and if I bend over to pick something up the blood rushing to my head and increased blood pressure makes me get a headache.

But altogether I think these are small problems compared to what I think others have to suffer through while on chemotherapy.  My oncologist said there was no science to how the symptoms appear after I mentioned that mine had changed where they showed up in the cycle. 

The whole idea of chemotherapy is that it kills the cancer before it gets you. So naturally there is a certain down side to taking this course of action.  I would imagine that for some people, that course of action fails.

I have placed myself, with help and encouragement, on one side of a bet that I will survive the chemotherapy.  Not everybody does.  So far everything implies that I will. 

Lucky me.

It was an OK day, not much to write about

Tomorrow is my last day of prednisone for this cycle, and that will help with things.  At least sleep.

I'm not experiencing very much nausea, mostly just occasional heartburn.  So I'm doing pretty good. 

I managed to get three blocks in my walk today, an improvement over the last couple of days and even better than last week. 

Things will look up until they look down again.

I got little more than a couple of hours of sleep last night because the prednisone kept me awake - I would drift in and out of sleep and look at the clock.  I did take a sleeping pill and some pain medication.  Eventually I took a muscle relaxant during the night because of pain in the middle of my back.  I wonder if it was the 
L4 compression fracture acting  up? 

The muscle relaxant helped with the Muscle spasms, so I was back to drifting in and out of sleep.