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.