Flush!

I went in to the Cancer Hospital today for a port flush.  The nurse, who had drawn blood and flushed my port many times did the work and it went well.  Good red return so no need for a big anti-coagulant to flush it out.   TPA takes at least half an hour.

I saw the Nurse Navigator and said hello and also my oncologist - albeit socially not professionally.

It was fun bumping in to everyone, they all said I look better - I have hair now although I think it is a bit curlier than it use to be.


I got to see the scheduler, a nice young man Mary and I have come to know because of the many times we've scheduled appointments for me there.  He's done most of them.  

I gave my email address to him so he could keep me up to date on a couple of referrals he was setting up.

After I got home I received an email from him and made an appointment for next Tuesday with a physical therapist. I'll be seeing a neurologist at some point but that department will call me when they're finished reviewing my file.

All in all I'm doing pretty well.  

Occasional pain that doesn't last too long and sometimes I take drugs.

Oh! How I love the Pain!

It has been a fun week. 

I saw my family doctor Monday, and had a cavity filled by my dentist on Tuesday.  These experiences have been kinder to me than some other things I've had to experience in the last year.

Since I have been paying attention to my neck problem,  I've been feeling far less pain.  I take regular doses of Skelaxin.  It is because the little scrunched nerves all up and down my neck tighten up my muscles and cause them to spasm. 

And if I just ignore it, it will get worse.  And eventually feels like serious pain.  But it takes a while to get to the really bad pain so I have plenty of time to get a little something to take the pain away.


This morning I was unable to go back to sleep after waking up at 5:00 but my neck wasn't nearly as bad as it was when I had done nothing for it a couple of weeks ago.   I had taken some muscle relaxant and Aleve before going to bed and that was good for most of the night.  It would have lasted the whole night if I hadn't gotten up.

I'm pretty oblivious when I'm asleep.



I've informed my doctor that I'm in the process of making an appointment to see a neurologist and will see a physical therapist after that.  

My doctor wants me to get into physical therapy  and in our conversations has implied that I will need much less Skelaxin in the future.   He then described a device for stretching my neck to get a little space for my nerves between my somewhat compressed vertebra.

For some reason an image of a medieval torture device came to mind - modernized with upgraded leather straps and fine aluminum bracers.

The device he described fits around the neck and pulls the head - excuse me, my head, up to stretch the neck.

Will it really do any good?

I would just like to drug myself into oblivion but I doubt that those drugs will be prescribed.

I think the most serious pain med I will be getting for this pain is Advil.  With the help of a little muscle relaxant.  

Such is life.   Pain relief is not recreational.  But it is a pain.

So I'm stuck with this?

The MRI came out clear of cancer; but my neck does have problems; they just won't kill me unless my head falls off.

My doctor explained that I have:  Cervical Stenosis;  which is not that bad compared to cancer.

I'm not happy about that, but it means my neck problems won't grow on me like they did before.

I'm stuck with it and there is no quick fix.  Too bad.

Thud or Adventures in Claustrophobia

Although the tube extends an egregious number of feet, I feel that my head and body are going into the open door of a front loading automatic washer.

Naturally this is incorrect, since I know I will not be rotated.  But I will be mixed up.

In all such front-loaders, your body lies prone on a flat-bed rack which will insert you like some long and distended tongue into the slenderest of tubes.

There is a thin blue line down the length of the tube from end to end right up at the top so you can tell that they have you in there right side up.    There is not much room, and while I am being slid in I try to keep my arms in so they don't get scissored off by the sides of the machine.   All the while I'm in there I don't feel quite comfortable letting them relax.  

There are a couple of post-it's of Tonka toys pasted across that blue line. 

They had given me a big red ball to squeeze just in case I got claustrophobic and could no longer bear the sense of confinement.  I kept thinking, is this what it feels like when you're buried alive?

Well, I guess - except for that blue line.  They don't put that on the inside of the cover of the coffin because it won't matter to you if you're right side up or not.  And they know that.

But to get back to my story I was having an MRI.

I have a headache every day and it starts in my neck and goes all the way around my head unless I take enough drugs to make it all better.

One can confuse the lack of pain with being well.   I often do, especially when I take a really good painkiller.

At least one of my tumors (back when I had them) was chewing close enough to my spinal canal that my oncologist thinks I am potentially a candidate for a brain tumor.   And he would like to verify that my headache is not from that. 

But the pain is in my neck so he ordered a head and neck MRI.

Personally, I think my neck is being problematic, and the only other time it hurt like this it had a tumor deep in it's muscle wall.  Pressing out, and causing all kinds of mischief.  Crunching on my C2 vertebra.

But I could merely have a damaged neck that has hurt more in the last week than in the week before.

Be that as it may I was in for a ride in an MRI and to enjoy the ride I listened to the entertainment and I tried to catalog the sounds as I listened to them.  There were the loud high pitched buzzers that did not seem to predominate.  The sound of an unmuffled  diesel engine; maybe a tractor engine.  It would vibrate at a couple of different frequencies enough to make me think of all kinds of instruments that vibrate for various reasons.   Vibrators for example.

There was a mechanical woodpecker sound.

I would have to say that the tractor and diesel engines along with the occasional: "Whack!" were the dominant sounds.

Let's see - this is therapeutic right?

Put someone in a narrow tube, add loud noise and don't let them move for oh over an hour an a half.

I actually fell asleep in the middle of the noise.  Thus bearing witness to the peculiarities of the human psyche.

But it is over and now I can wait for the results.  But I think I will take a pain pill first.

I get by with a little help from my friends.

At this point I figure that I either have my little friend back in my neck or I have a chronic neck problem.

If my little friend is back he probably has little brothers and sisters.  In which case I'm in for another round of chemotherapy.  Yuck.

If I have a chronic neck problem then I am in the position of begging my doctor for drugs to control the pain; a rather unpleasant prospect.

The MRI will be Tuesday at 11:30 of my head and neck. 

And we shall see after that.  My neck is having some of those peculiar sensations that I had when I had a tumor growing under my neck.

It will be a relief to find out either way.   But which is worse, cancer or a chronic neck problem?

It's a headache. With uncomfortably familiar sensations in my neck.

Yes, sometimes I wonder what it would be like to recover from the pain so I can tell how bad it really is.  I feel as though I have been dulled to its full effect.  

I've been having memory lapses where I almost smell the saline they use to infuse me with anti-cancer drugs.  Pleasant, no?

You can probably guess that the pain I'm feeling has somehow reminded me of the hospital environment. I can't escape it.

I shall forever be plugged into a drip, drip, drip.  Thank goodness I still have my port.

As you can probably guess the headaches have gotten bad enough that I actually have to deal with them.  The degree of sloth I have is considerable, and my inertia something incredible to overcome.  Finally, today I overcame it and sent an email to my oncologist, copying his nurse navigator and my family doctor.

My head hurts.  I forgot to take an Advil.  Or maybe I didn't and it just feels bad.  I think I took the Advil.  I'll take another.

I found an alternative which will (I think) stop the pain.  It is rather serious pain medicine but I don't want to feel anymore pain tonight.

The back of my neck doesn't feel right; it feels like something is swelling up inside of it.

With the way that I feel I am wondering if a little tumor had been born in a comfortable place where it can cause me pain. 

The R-CHOP was very effective, how could the cancer come back?

Either my neck is plain messed up or I have an old familiar friend come to plague me.

We shall see next week.

My Neck is Causing Headaches

Over the past week or so my neck has started to hurt.  At first it seemed so insignificant I ignored it. But I have been taking Skelaxin to keep it quiet so I can get to sleep, and after waking up at 2:30 I was unable to get to sleep again so I got up this morning at 3:00 or 3:30.  

My neck muscles feel pulled.  And I have woken up with a headache the last couple of days.

It was a year ago that I was between the biopsy and a diagnosis and I remember my neck hurting not at all because I finally had good pain medicine. 

I sent a note to my oncologist's nurse navigator and I suspect I'll be going in to see my oncologist.  I just don't know when.

Wiped after 3 mo followup with oncologist

The parking lot is located quite some distance from the cancer hospital, and I felt tired by the time I was ushered into the little room where I would wait almost an hour to get poked for blood and see my oncologist.

This delay tells me that I am low on the priority list - meaning I am in relatively good shape and am not someone to really be concerned about.

After all, the cancer should be gone.

I was able to tolerate my stay at the cancer hospital pretty well, and I went home and since it was a vacation day, did anything but work.

What I was surprised at was how tired I was the next day and how weak my leg muscles felt.  My body was wiped from a simple visit to my oncologist.

Surprise - I still have a chemo hangover.

followup 3 mo

I had my 3 month followup visit today with my oncologist. 

I'm doing pretty well, I just have a fatigue issue and I'm having a difficult time building up stamina so that I can walk further and exercise more.

My issues are: fatigue, headache from the neck muscles at the back of the neck and very slow healing.

My white cell count was 3.7 which is some improvement - my filtrate level was 2.3 which is also some improvement.

So my immune system is still nothing to write home about but it's a notch up from where it was before.

I will be back to see this doctor again in another 3 months.  I will get another CT scan the same day and if it is all OK will probably have my port removed.

Taking Stock of My Status A Year Later

It has been about a year since the biopsy and there is quite a difference between then and now.

It is nice not to have cancer anymore although since it might come back the thrill from that prospect does not have the pleasure that it probably should have. 

And my neck doesn't feel normal.  It cracks a lot when I move it and I can sometimes sense that some of the muscles feel that they've been pulled. 

I wonder how my C2 vertebra is doing.  Did the part chewed out by the tumor ever fill back in with anything?

Occasionally I take a pain pill for headache and neck strain.  

Otherwise I'm more or less in good shape.  I have to diet or something to deal with the weight gain I experienced during chemotherapy.   My blood sugars run high but not enough to worry about.

I am walking about once or twice a week.

My thyroid medication is finally at a comfortable dose.

I still have episodes of tiredness and I do not know how much my immune system has recovered.  It was just below the minimum values for normal in early October, but considering that I took my last dose of Revlimid August 3rd I was hoping to have it back by now.

I feel that I am on a plateau slightly below normal standards.  Still occasionally tired, and my immune system not quite back yet.

But my dose of Levoxl is good!

Old Notes and Further Nostalgia

I sent this note to my family doctor on 11/25/2009

It has been an interesting couple of weeks all things considered.  The biopsy included half a tonsillectomy free of charge.  Over the last couple of days I have noticed that I now have cramps further down the muscles at the back of the neck closer to the right shoulder as well as where I used to have them before on the side of my neck.   I thought it was worth mentioning because it is a change.  I was unable to sleep in our bed last night, I ended up on the couch sleeping in almost a seated position.  Not the most comfortable way to sleep.   Thanks,

Obviously, I can't keep my dates straight - I had thought the biopsy was later.  But it was in November and we are either sitting on the anniversary today or or we are right around it.

It's always nice to remember these big events - my tonsil going missing; the lousy sleeping arrangements.  I almost think I should do something to celebrate - have a glass of wine or something.

Back then, with all the funky drugs I was on, a glass of wine would not have been an option.

I'm being maudlin - Here's a little nostalgia

Here it is November and it's about a year ago that I had the CT scan that showed my first visible tumor. 

A lump had shown up on my neck that it turned out had nothing directly to do with the tumor that was at the back of my neck between the muscle wall and those great blood vessels that service the brain.  The scan showed that my tumor was eating into one of my vertebra - the C2 vertebra.

This was on the right side of my neck and the ENT that looked at it could see the bulging out on the back and right side.  She sent me to get the CT scan.

It took a week or two to get a CT scan and my ENT wanted me to get back to her the same day with the results.  I think she had suspicions.

Once you know you have something it suddenly seems to take forever to get to the next test; and the next test for me was a biopsy.

Mary and I went to the outpatient clinic where the biopsy was going to be performed and they wanted me to bring my living will if I had one.   That is a really weird request to get from someone.  Think of the possibilities.

This is not a simple: here let me stick this needle into you.   This was a throat operation.   My ENT (who sidelines as a surgeon) excised my right tonsil to get to the mass.  Good with a knife that one.

She told me afterward that she wanted to get enough out so that she wouldn't have to go back in to get more.

Soon I will be having another Thanksgiving dinner - I was on drugs for the last one; I stopped the muscle relaxants so I could have a couple of glasses of wine with dinner.


The biopsy was in early December and the diagnosis of lymphoma was in mid December.   I saw my oncologist for the first time the Monday after Christmas and had a series of tests.

My first infusion was New Year's Ever 2009.  What a way to celebrate.

Way post chemo and when will I get better?

It has been a while since my last checkup, adding some electrolytes to my diet and ingesting a lower dose of my thyroid medication every day.  My metabolism has slowed and I have had a bit of weight gain.

I guess that fixes the big stuff, but I have to ask:  when will I be better?

I still have the occasional bad day, can't over extend myself very much and in general have not gotten over the effects of the combined R-CHOP and Revlimid.

I don't feel bad, I just can't do very much.

I guess I'll spend a lot of time around the house?

Who dreams of electro-lytic sheep?

I finally acted on my family doctor's advice and got a mixture of electrolytic stuff to take.   It seems that I have been drinking water a lot (the diabetes) and my electrolytes are not quite what they should be.

I am also wondering if all of the chemotherapy which involves a lot of diarrhea and dehydration didn't add something to this.  Maybe I should have been taking this stuff a lot sooner.

This was only detected because my doctor as a blood test that looks for it. 

So while I was at whole foods yesterday I picked up a small plastic jar of the stuff and mixed it with some water.

I think it helped.

Twelve Micrograms Lighter

In some ways the time since my physical has been rather blissful.   Except today when I thought I had a cold.  I took some Benadryl and it seems so much better, and that was at 11:45 this morning.  The cloudiness of mind lasted quite some time but I recovered and found myself working into the night because my projects have needed attention.

I am not a workaholic.  I don't even play one on TV!

But the other thing that's been going on that I have been happy about is my reduction by a full 12 micrograms of my thyroid medication dosage.   I feel fine.

Wasn't that a Beatles song?

When on the fully loaded 137 ug I was always focused.  So much that it practically hurt:  I couldn't come down from it.

But now I feel so much better; and I feel that I rest more and don't miss as much sleep.

This might do me some good.

My Physical Was Today

There is nothing quite like a physical to buck you up after wading through the doldrums of post chemo blahs.

There is the prelude of the mandatory tests checking hearing and lung capacity and the EKG which are especially helpful for those approaching quasi geriatric decrepitude and senescence.

But I forgot about the pleasures of forgetfulness.


So I hear pretty well, I can breathe and my heart is in surprisingly good shape.    My ejection fraction is 55-60 percent.   And the ECHO report didn't say terrible things about my poor little ticker.   It has a few little oddball things: Diastolic left ventricular dysfunction (impaired relaxation); There is mildly increased left ventricular wall thickness with normal chamber size and contraction.

But what the hell, my little old heart just keeps chugging away.  I'm not going to complain.

My lipids looked good relatively speaking, I expected much worse.   My glucose was 137 and my HbA1C was 7.4 which is more than I would like but not all that bad when I put it in perspective.

My immune system has ticked up a little.  Since the last blood test taken at the hospital. 

The question about atypical lymphs was answered in the sense that it is the kind of statement that needs to be understood in the context of six R-CHOP infusions (ended mid April of this year) followed by three months (and three cycles) of revlimid.

And revlimid does strange and wonderful things to the spleen which is centrally involved with the immune system.  Well, I was being sarcastic and ironic.

My doctor said I look good on paper.  I replied that so did a lot of people's financial statements just a few years ago.   He also said that looking good on paper didn't guarantee anything.

Sometime after I was examined on the table I noticed a bruise that I had from where the phlebotomist had taken blood for my physical over a week ago.  I am very slow to heal - I still have a bit of the bruise from blood taken from me on September 29th.   I have another issue that has hung on much longer than it should have.

On a lighter note my doctor and I discussed my levoxyl dosage and since it brings out in me that focused and organized state that works so well with my trade;basically turning me into that obsessive compulsive computer programmer that so many people have come to know and love.

I think it's about time that I switched back into being that laid back bohemian I always wanted to be and was once upon a time.   I was hoping to do this before I dropped dead of hyper-activity.

My old dosage was 137 micrograms and the new dosage is 125.   A drop of 12 micrograms.  I know that I will have moments of great relaxation before I adjust to the new dosage; and probably moments of sleepiness.

But maybe I won't wake up so early in the morning.  Like I did this morning at 4:30.   A good night's sleep might be therapeutic.

Altogether I am still down with the chemo and have not come back to normalcy.  My immune system has been assaulted.  I won't be back to normal for a long time and I do not know how long I will be like this.

My most prevalent symptom is fatigue; in one form or another.

welcome to the world of post cancer enuei

I have come to expect to be fairly strong most of the time and to only have deep tiredness perhaps the day after some exhertion.  So I find it strange to be so very tired on a Tuesday; and the only thing I did yesterday was walk my usual walk to Knob Road.   Although I did find it tiring.

I don't know that this should mean anything in particular but it is way early in the week to feel this way.

On another note, I received a copy of the ECHO report and I will just take my oncologist's word that it says my heart is essentially normal. I will discuss it with my family doctor on Thursday.

I am still feeling a deep and achy tired.

essentially normal

Just an FYI for the curious.   Although I have not received the ECHO cardiogram report from my oncologists nurse yet,  my oncologist has seen it in draft form and my heart is "essentially normal".

I wonder what that means.

My lab report is "reasonable". 

Good news, I'm sure.

what you've been waiting for?

Well, I finally have my blood work back and there are parts of it that I don't understand.  But some parts are obvious.

The reason that these were taken was that I'm not recovering from the chemotherapy as quickly as I think I should.   So with that in mind I'll see if I can see things that will slow me down or show how bad the chemotherapy has been.

The first thing on the list, and most obvious to me is the Hemoglobin A1C which was 7.4.  That's much higher than it would have been before I had any tumors.   It's not the 10+ I had when I was diagnosed with diabetes.  It's not catastrophically high.  But it's bad.  Normal is 4.8-6.0.

My TSH (Thyroid Stimulating Hormone) is 0.31 which is low the normal range is 0.6-3.3.  That means my pituitary does not think I need thyroid hormone.

My T4  which my doctor told me is most of what my thyroid produces is 1.42 which is high. This seems a little odd because I have thyroid disease and take a pill to supplement my personal production of T4.  The range is 0.71 to 1.40.

So I guess I'm just zinging right along.

As for my immune system:  my white cell count is3.4 which is about what it got up to after I came off the chemo but before I was on the revlimid.   That's nothing to write home about.   I can fight off infection but probably not well.

I don't understand what the other numbers in the immune/blood section of the report mean but I'll list them and

WBC Comments: ATYPICAL LYMPHS PRESENT.

My absolute neutrephils are 2.0 which is the bottom of the normal range 2.0-7.5.

Platelets are in the normal range at 187 normal is 150-440.

I know platelets involve clotting and neutrephils are important for fighting off infection but the rest of it is Greek to me.

Cardio Ultrasound

Like many tests I've had not directly related to cancer I had my ultrasound at the main hospital, Memorial Hospital.  The Cancer Hospital, Women's Hospital and Children's hospital are all connected to the Main Hospital by a large enclosed high ceiling glassed in space.

It has the feel of an airport and people walk back and fourth, some dragging little wheelie things that look like suitcases.  There's even a Starbucks.

I wonder if my heart would have done those little thumps if I would have had a cup.

I arrived early and found my way to an information desk and then to the escalators.   When it didn't feel like an airport it felt like the Student Union where I went to college.

At registration they gave me a map and directions to the elevators which was very helpful.  But I still got lost.

The place is a maze.

I finally made it to the waiting room and read Niall Ferguson's War of the World.

A young Chinese looking woman who was obviously from the States brought me into a small room and I took my shirt off and laid on a bed that had the head part lifted up.  Once I laid down for a bit I realized I should have taken my shoes off.

My blood pressure was a hideous 190 over something equally bad.   Although now that I think about it I had hiked quite some distance from the car parked in the garage to that little office.

My BP is usually about 120/70.    

It was interesting to look over at the monitor and see an upside down image of my heart slosh around on the screen.  The tech - that nice little Chinese looking woman explained some of what was going on and how my heart points down and to the left and that's why she was holding the ultrasound device where she was.
 
She was trying to get pictures of my heart and time it so that it could be caught in the act of doing one thing or another.   Some of the pictures weren't clear so they had to be taken again.  There was another woman in the room who looked like her superior and she occasionally took the gizmo and held it up against my chest. 

This all took some time.  Meanwhile the little squiggles  from an ECG ran across the bottom of the screen as various patterns were displayed.

Every once in a while I would hear a sound that reminded me of the mechanical swooshing sound my mother's ancient washing machine used to make.  Another sound reminded me of the rhythmic sounds one of our cats used to make when he was barfing.  It had that familiar feel to it.

Those sounds were actually the sounds my valves made.

They had visual displays of the sounds as well; and took a large number of pictures.  

Altogether there were four different spots where the put the little thing that resembled a toy electric razor and each time they did they covered it in a little blue tinted gel.  Gui gunk.


I had started on time at 2:00 and left the place at 3:20.     I will see if I can get a copy of the report.

after the big stuff is over

Now that my lymphoma is gone (or seems to be) all I have to deal with is the aftermath.  For example my boss would like it if I could come back to work full time.   Soon. 

Although at this time I feel pretty secure because the people who are his bosses are incredibly decent.  I am shocked by how supportive they are.

Actually my boss has been pretty supportive too.


But the effects of the R-CHOP and Revlimid linger and I have no idea how long those effects will last.  

Normally I would have just lived with it but because I have to answer to these people every few weeks I can't just say that I can't come in without talking to a doctor about it.  

Let's be reasonable if I could be all better right now I would make it so.   But I do not know how to do that.

I have to wait for nature to take its course.  My body has to heal and that may take a while.

the office visit

One must remember that medicine is an art not a science.  Information can be teased out of the patient and it is my experience that nurses are better at this than doctors. 

There are of course blood tests and they help too; I suggested a Hemoglobin A1C and my doctor smiled and said yes.  This test should tell us all how badly my red blood cells have been mucked up by the high sugar levels I've been providing myself with.

For a diabetic, it is always good to remember that starch breaks down into glucose.   And I had become addicted to toast and butter with my eggs.  

Other tests will be TSH which is the thyroid stimulating hormone produced by the pituitary gland and a T4 test which measures thyroid hormone itself.  

I am scheduled for an echo cardiogram because R-CHOP can damage the heart.   Sometimes mine does not seem the same; especially when I get tired and short of breath walking. 

It is reasonable that the R-CHOP chemotherapy and Revlimid account for my difficulties; but there are other possibilities and it is best to look into them now rather than later. 

It may save my life.

prep for a visit to my oncologist

Just to get the timeline straight my last R-CHOP infusion was mid April and I took my last revlimid in early August.   I'm still having fatigue after any exertion such as going in for a port flush.

My last visit to my oncologist was August 30 and I sent an email to the study coordinator nurse (and bizarrely expected her to forward it to my doctor) in short:

 I am somewhat better hydrated and have less dry mouth. Much less constipation.

My energy level is better, but if I walk perhaps 3 times in a week I will be exhausted by the end of the week. Week before last I was tired on Thursday after walking Monday, Tuesday and Wednesday. I walked on Thursday as well but only went half as far. I was tired Friday. If I don't walk I feel better towards the end of the week.
 
I still have headaches. They aren't as bad when I was on the revlimid or as frequent. My neck doesn't feel as bad as it did on the revlimid.
 
While I was on the revlimid I would occasionally feel a couple of thumps from my heart, but it was infrequent and went away immediately. In the evening several weeks ago I felt more frequent thumps that seemed almost to be an irregular heart beat. When it happened during the day I called my family doctor and he wanted me to come in immediately and gave me an ECG. The little squiggles appear to be normal, although if you look at the spikes you can see that their regularity is not perfect (as they used to be). Some of them are a bit further apart or closer together. My doctor heard some of the heavy beats when he listened to my heart. Since caffeine can affect this kind of thing I greatly reduced my consumption of caffeine and they seem to have gone away.

A couple of days ago I emailed my oncologist's nurse navigator and the following are the important parts of that email:

In many ways I have recovered from the Chemo and Revlimid but when I
went to work a few weeks ago I was able to stay for 3 hours before I
started to get tired.  I came home and it was difficult to work so I
napped for two hours and felt better after that.

Last weekend I went shopping on Saturday morning and went to the
pharmacy, Trader Joe's, Whole Foods and Harris Teeter.

After I got to Harris Teeter I became tired and started to not feel
well.  I know four places might be a bit much, but I figure if I can't
put up with that I'm really going to have a hard time going back to work.

The plumber came over for a few hours and we talked over the kitchen
sink which had a problem.   He was only there for an hour but I had
repeated moments afterward of feeling suddenly tired until I rested.

So my question is for people with whom fatigue hangs on longer than it
should how long does it hang on?
 
So I will see my oncologist on Wednesday and discuss all this.  They'll probably take blood (once more) and look at the results of the tests the way an Augur examines sacrificial entrails.

What will they find?

what about that fatigue?

I emailed my oncologist's nurse navigator last night and got a response today.

It seems that fatigue at this stage is not normal so I will be seeing my oncologist next week.

I'd be more clever, but I have a headache and am too tired.

Monday AM is my port flush.  Since it's a double port it's one flush per side.  Stick that needle in and push that plunger.  Twice.  Goodie.

fatigue remains

I don't seem to have much in the way of reserves yet. 

Saturday is "grocery shopping" day and first I went to the pharmacy to get some of those wonderful little pills that help things move through my intestines without plugging them up.   Then over to the place that has some nice (cheap) bread that I like and a few other special things; then on to the place that has the good meats and where I buy most of our food and then to the supermarket where I get the rest.

All this shopping takes about two hours and somewhere at the supermarket I pass the point where my body can be comfortable anymore and I may get flu like symptoms or just feel like crap.

And then I come home with a car full of goodies.  And I unload and do some stuff with all the nervous energy before I collapse and check out mentally for the next four hours.

You can see the problem, one of these days they will want me to come to work and I will have a problem with that. 

a bit of dental work

It was a very pretty day in Chapel Hill today; I drove to the dentist at about 6:45 AM to finish having a couple of crowns put on my back left and the drive felt nippy.   I was wearing a T-shirt so my arms felt the cold.

Before the procedure started they numbed up the inside of my cheek and injected something to ease the pain.   While I was waiting for the lidocaine or whatever it was to kick in they sat me up and I watched one of the morning talk shows.   I felt lightheaded like I was having an anxiety attack.

I never have anxiety attacks - what's wrong with me?

Is this one of those little things that I have and will discover that is not the same before and after chemo?

It's Saturday, Oh Yes and How do I Feel?

I do the shopping rounds on Saturday, it takes at least a couple of hours and I can consider the fact that I make it through more than one store as an accomplishment.

It was only a few months ago that I had a difficult time making through one store without having the experience while walking down one of the aisles of abruptly feeling a sense of weakness. 

In store number three today I had "flu like symptoms" without the nausea; somewhat the way I had felt when my liver wasn't working right so many years ago.   It eventually passed.

Normally I feel fine, except a little over weight. 

Considering how little it takes to put me in a physically weakened state,  I am wondering how long it will take my body to recover from this. 

Will my body will recover from this?

Another Day in the Life

I went to work at the office today for the first time since some time in May and lasted about three hours before I began feeling the energy drain out of me. 

My boss replied to an email I had sent out earlier that said that I was in the office (my boss and I are on opposite coasts) as I was about to enter something I tried to pay attention to how I felt and I said I was sleepy.

I ended up going home and basically crashing.  Tired, oh so tired.

Now mind you I can sit and program until my eyes crust over pretty much as long as I do it at home. 

Well, maybe not that long. 

But it's not the programming; it's all of the people that I meet and greet; many  of whom I appreciate and like a whole lot.

This experience does make me wonder how long it will take me to recover from the effects of the drugs.  I should be over them by now.  I'm not.

Another day of freedom

It is not quite a week from when I last saw my oncologist and I am starting to get used to the feeling that I might be well once I get over the final depredations of the drugs.

I still have headaches and my neck is still stiff and behaving oddly.  My muscles don't feel good.

I am limiting myself to one cup of coffee in the morning to prevent my heart from having peculiar off beat thumps.

I'm usually brain dead or simply very tired by the time I get to the end of the week.

But it's nice not to have Mr Death tapping me on the shoulder and asking me if I have the time to take a walk with him. 

I remembered something today from July 2009 which was back just after I had started having headaches.  I was driving home from work and I had the feeling that there was a female presence in the car with me telling me that I would be OK that she would stay with me and protect me.

In all of this maybe that would have been one of the better things to remember.

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.