Cold to the Bone Chill

I think I had my last PET scan in October, and since that time I seem to have been doing pretty well.  Mostly I've been trying to find a solution for my stiff neck/headache problem which is fallout from having a tumor in my neck and then being treated by a drug that has muscle cramps as a side effect.

My oncologist says the Revlimid I was taking doesn't have headache as a side effect.  Sure, except my neck.  

In pursuit of a pain free experience of life, ever hopeful that I can find a "cure" I applied an NSAID topical cream to my neck, and my neck felt better.  But then I started experiencing side effects.  Nausea. 

I have over the past several weeks experienced a chill.  It starts in my head and goes down my spine and is disconcerting.  It's the kind of chill that you get just before you vomit.  Like you are just experiencing sudden cold.  No goosebumps; just cold.

Well, last night it was very bad, but the feeling went away.   It was somewhat more intense than it had been the last two times I felt it. 

But why do I get it?

Let me speculate:  I took an NSAID the last two times it happened, although much earlier in the day.   I had not taken Skelaxin for a couple of days.

I wondered if I had been sensitized to NSAID side effects, so just using something that used to be no problem would result in nausea and a very strange feeling.

Could it possibly be a withdrawal symptom for Skelaxin?

Blurp! Just a little Tipsy last Night

I enjoyed a glass of Malbec last night.  It was an old bottle of Castello del Diablo left in the refrigerator for at least six months which, if you like cheap wine, is one of the better ones.

It is Chilean, which helps account for the price.

Maybe I did have a bit too much, but my liver seemed to take it pretty well.   

It's the rest of me that isn't feeling well this morning.  Bit of a headache, neck getting twitchy.  Just like that slightly hung over feeling I used to experience regularly in my college days.

I took a couple of Advil a bit after breakfast and am waiting to discover if my stomach will start to feel upset after a while.

As you are probably guessing by now I am looking for OTC drugs that I can use to supplement the Skelaxin which is a muscle relaxant.

It has been a hit or miss proposition.

Drugs are burdened with side effects, which are unclear until the drugs are taken for a while.

The only prescription topical NSAID I tried made me sick even at a low dose; and as a result I studied how that class of drugs works and discovered the peculiarities of prostaglandin suppression.

I'm looking for some topical Ibuprofen right now which I expect to work better than the Aspercreme, but not work so well that is suppresses my prostaglandin production to the point where I get an upset stomach.

Well, it might work.

So I will probably revert to a Skelaxin in a bit to deal with the stiff neck and headache I have today.

I have emailed my family doctor, who I see on Wednesday to help me manage my neck as a tension headache.

I wonder what kind of treatment he'll come up with.  I read about tension headaches on the web and the article said that one of the treatments, aside from a frontal assault on the pain with wonderful drugs, are some varieties of anti-depressants.

Just looking at the caveats of those kind of drugs, I might not be able to take NSAIDs with them because of the potential for bleeding problems. I can feel the potential pain from that already. 

I'm wondering how a drug like Paxil, a GSK antidepressant will make me feel?

I've been thinking that I'm probably a mentally deficient depressive anyway, maybe I'll get cheered up with that drug.

Of course the fact that some drugs have strange effects on my central nervous system that they don't on regular people leads me to wonder what sort of mental side effects I will develop.

Maybe I'll become supper happy and really piss everybody off.   Nothing like a personality change to give your friends the willies.

It has been long enough that the Advil had kicked in and my headache and neck feel a bit different.  Advil doesn't work very well on this headache, but it does take the edge off.

We'll see how this works.

Oncologist Visit Today

It was a fun day, visited my oncologist and had a conversation about my general condition and of course, my neck pain.  He basically said that my headache does not appear to be the result of tumor, and headache isn't listed as a side effect of Revlimid, and since the neurologist thinks the stenosis doesn't matter: I have a tension headache.

I am amazed at how often diagnosis are ad hoc.

At this point I seriously regret having participated in the Revlimid study.  The stuff really did a number on my neck and my doctors talk about it like it just isn't so.

In terms of general condition, I'm doing pretty well.  My stamina is somewhat less than what it should be, and of course my neck hurts, but aside from those two things, I'm OK.

I got a copy of my blood test and the white cell count is 4.7 which is lower than it used to be before chemo, but now is considered normal.  It's just .2 over the normal threshold since normal is 4.5 to 11.0.

For some reason my chloride level is just 2 points under normal.

My Absolute Lymphs are just a little low, and my doctor said that's normal, there is a long recovery time for that after chemotherapy.

He suggested that I should have my family doctor manage my neck pain, at least until I get into the Headache Institute in Chapel Hill.

What do you do for a tension headache?

I tried some Naproxin the other day and I felt some of the nausea coming on.  Maybe after chemo my prostaglandins are not so great.

Back to Basics

The Nausea got worse and was persistent.  I had several days of worsening upset stomach.  That is a listed side effect of Voltaren Gel so I stopped applying it to my neck. 

I have been off it for about a week.


The nausea cleared up after a couple of days without the Gel, but what do I do about my neck now?

I did not feel like going back to Aspercreme since Aspirin has the same problem.

NSAIDs suppress the production of Prostaglandins which are important in the stomach lining.

It appears that the more effective the gel/creme the more it is likely to cause a problem.

I decided to go back to Penetrex because it seems to work.  After the Aspercreme and the Voltaren Gel I'm surprised at how well it works.  I'm hoping that since it's "natural" it won't cause any major problems.

Over the last several days, I have had ample opportunity to experience the genuine headaches without a drug to ameliorate their effects.  It took a while for the stiffness and pain to come back.

The Penetrex helps a lot, but some pain and stiffness still leaks out.

I take Skelaxin for that.

Singing the wonders of a new drug.

Voltaren Gel has been a real relief.

I've been using it off and on for about a week, and it has greatly reduced the soreness in my neck. 

I applied it before I went to work on Friday, and after about three hours at the office the headache in the deeper muscles started to come through.

Today I noticed a little nausea, and since this is a COX-2 NSAID it may cause some stomach upset.  Granted, I don't eat it so it has to do it from the drug that makes it through the bloodstream to the stomach lining.


So I begin to wonder if I need to take less of this, even though I am taking a small dose.

As I approach the day when I will go to the Headache Institute, I am learning more and more about my intractable headache.

Believe me it is a pain!

It took the pain away!

I applied some Voltaren Gel this morning and it got me though most of the morning at work pain free (about 3 hours).

Pretty good for some gooey stuff.  

The normal application is two grams, and there is a flat plastic measuring tool that measures out two grams, and I know the amount of this stuff that I'm using doesn't come close to that.

I feel optimistic that I have something that will help.

Let's talk about progress.

We are into April and the middle of the month will mark the two year anniversary of my last R-CHOP infusion.  Sometime in the second half of April 2010 (or perhaps earlier) I became cancer clear.

Now that it's a couple of years and I haven't had a relapse, my odds of having one are lower than they were.

Well, I don't feel any different.  But it's a pleasant thought.

I'm over the cancer.  But I'm not over chemotherapy and I include my three months of Revlimid in that.  I don't know which was worse, but the R-CHOP was of longer duration.

I think the Revlimid did something to my neck muscles.

I'm not as terribly exhausted as I was when I was on either R-CHOP or Revlimid but I get tired a lot.   On Tuesday I visit the office and allow myself two hours, and it really tires me out.

I find a comfortable spot when I get home afterwards and take a nap. 

My neck still has problems that cause headaches, but I have learned new ways to ameliorate them.

I noticed that the area where the neck indents just below the skull on the right side hurt a little.

Actually kind of sore to the touch deep below the skin and I had the idea that I had inflamed muscle (if that's possible).   So I went looking for anti-inflammatory creams to apply and started using Aspercreme and then Penetrex with it to relax my neck.

It sort of works and just about the whole day the headaches are reduced to the point where they're not badly irritating.  I still feel something in my neck that doesn't feel right, both the quiet grinding and snapping sounds my neck makes when I move it certain ways, and the deeper muscles that still are stiff and waiting to tense up.

The surface twitches and twangs with bits of pain shooting up my neck are greatly reduced.

It has occurred to me that putting Aspercreme on my neck and having it absorbed through my skin is perhaps not something I should do for too long.

I've asked my doctor to prescribe a topical NSAID for me to use and he gave me a prescription for Voltaren Gel which has it's own problems, I'm sure.

There is no drug without unpopular side-effects.  I wonder how that drug will screw me up?

It's a highly prescribed drug, so they don't have it at the drug store.   Maybe I could get some from AMAZON?

A couple of days without serious drugs.

I managed to stay off the Skelaxin, and that more serious stuff for over a day.  My neck got a little twitchy and seemed a bit stiff when I went out for my walk. But I haven't had a seriously bad headache yet.

I'm applying the Penetrex and some Aspercreme and so far that's been working, at least to keep the real nasty pain away.

I do feel a few uncomfortable twinges in some of the deeper muscles.  

Paperworked over.

Well, the paperwork for the Headache Institute is done and in the mail.

Thank goodness, it actually gave me a headache!

Naturally, I forgot to put something in, my list of supplements and DRUGS, but they'll call one of these days and they might ask about that.

Presumably once they get the stuff they'll call and I can make an appointment. 

I am so thankful that it is over, although, given my handwriting, they might want me to redo it.  I put several printed pages in so they could contact my many doctors, or send them a report afterwards.  What I wanted to very be clear about I put on a printed page.

All except for that list of drugs. But it is all printed out (except for the ones I forgot) and in a convenient spot for when they call. 

Or I can take it when I go in.

What a wonderful idea it was!

I woke up with a nasty headache this morning.

It was the kind that I can feel along the vertebra of my neck, so when ever I moved my neck I felt little twinges of pain.

Yup, stopping the Skelaxin was a real good idea.

One Advil, and half a Skelaxin later I felt my neck start to recover.

After I fed the cats at 5:30 and breakfast I had another Advil and another half a Skelaxin; and eventually I felt better.

I have a couple of refills of Skelaxin to go, I'm concerned that I'll run out before I get into the headache institute and can get this fixed.

Once more into the breach!

For the last several days I have been skipping the Skelaxin.

After going through a few days of funny feeling muscle cramps in my left arm, I'm actually feeling pretty good.  Sometimes.

I've been applying Aspercreme in liberal amounts in the hope that the problem is that my muscles are a little inflamed.  It seems to work on the top layer of muscle, but doesn't get down to the muscles deeper and under the skull.  Or the muscles that drop down to my back, but I haven't really been applying it there.




Right now I have some muscles that are sensing a new flexibility and others that are cramping up.

I'm thinking for tonight that I can avoid the Skelaxin if I load up on some pain medicine.  Or maybe I should just take the muscle relaxant, after all, it's my muscle that feels cramped.

I was looking around for some more potent anti-inflammatory to apply topically when I came across something called Penetrex, which is a non-prescription anti-inflammatory and I hope it works better than the Aspercreme.   

It hasn't come yet, but it's supposed to work on the kind of tissues that I'm having a problem with.

Wish me luck, why don't you?

Paperwork

In preparation for meeting my new doctor (the next in a long list) I have been filling out the Questionnaire.  Getting dates for things like lumbar punctures, CT scans and MRIs when I came across this question: "How often do you exercise?"


That was after the section on social history which encapsulates: education, salary level/household income, occupation, caffeine use, eating habits and a few others.


Why don't I just supply my whole life story?

Looking more deeply into the paperwork it looks like I'll be coming close to doing that. 

Since my neurologist said that my daily headache  is probably just a muscle thing, I should find a way to deal with this other than Advil and Skelaxin on a daily basis.

She's right of course.

But I had no idea there would be this much paperwork to fill out.  

It is a real headache!

What a Headache?

I went outside to bring in the mail and found a large brown envelope from the headache institute to which I have been referred. 

Just a little moist from last nights rain.  The envelope it was on top of was out and out wet.

These things happen. 

The rather large questionnaire was damp in a few spots but otherwise OK.  I am letting it dry after paging though it.

I need to dig out information about the neurologist who referred me; dates on MRI's and CT scans.  But the questions asked assume the scans were about headache/neck pain while in reality they were about lymphoma.

It's a long questionnaire full of little boxes to check and questions about drugs and a whole section that looks like a questionnaire about whether I'm depressed or not.   I suppose it's efficient; it's also a pain.

I will be introduced to another doctor.   Not something I enjoy.

I would like relief from the daily headache and get off drugs if possible.  Or I would like better drugs.  Ones that really work.     

Drugs that I can add to the list of the many drugs I take, just to get by.

Waiting for relief..

For the last couple of weeks my headaches have been pretty mild and somehow I thought I was getting over the bad pain.


I've got a very bad headache at the moment and I wonder, why did it hit now?


Fortunately I can feel the Skelaxin and pain medicine that I took almost an hour ago kicking in and I am beginning to feel a little better, but there must be a better way to deal with this long term.

I've been thinking about the Carolina Headache Institute which is, I believe, the place my neurologist referred me to.   Although they haven't called me yet.

From the web page, it looks like it focuses on all kinds of headache, migraine or cluster headaches for example.

I'm a little concerned that my neck pain may not be quite their bread and butter since it's mostly muscle pain (so my neurologist said) in my neck.

When my headache is bad I feel like I'm suffering the after effects of being hit in the back of the head with a baseball bat without having to endure the initial thwack!

It's those muscles at the back of the head, especially on the right side just behind and beneath the skull.


I hope they can help me.  I'm skeptical, but it would be nice if they could do something so that I wouldn't be stuck taking muscle relaxants and pain pills for the rest of my life. 

A visit to the Neurologist

It has been well over a year since I've seen my Neurologist.   She had changed her hair style and was striking.  We hit it off on the right note when she came to get me and I told her that she looked different, she laughed.

I am however always stymied when a doctor asks me why I am seeing them and I have to start describing my symptoms. 

As it turned out I wasn't in great pain when I was there, I was rested.  I had to wait until I got home and the pain in my back and neck had time to gel.  Pain medication followed.

As I figured out when I went off of the Skelaxin for a while just a few weeks ago, the drugs become less effective as you use them more.   Some of their side effects might start to surface as well. 

The point of this is that over the long term drugs (I have at least two large bottles of Advil to help the Skelaxin) are not good.

So my attractive doctor is referring me to a headache institute right here in Chapel Hill, not associated with UNC Hospitals where they may have therapies that will allow me to come off the drugs.

She suggested one possible therapy which is injections of Botox in my neck muscles.

It would be wonderful if my stiff neck and headaches would go away.  It is almost too good to think possible. 

I could have a glass of wine again without checking to make sure I hadn't taken some drug where alcohol was "contra-indicated".

Maybe the pain will be "contra-indicated".


 



 

Almost Monday

Monday will roll around in the morning and I am wondering if I should shower and then work, or work and then shower.

Although I start work at 8:00 AM or shortly after I usually get up about 7:20.  Since I have been trying to sleep more, and be more rested I've been getting up later.

The schedule goes something like this:  I am sleeping in the big stuffed leather chair again because I hurt my back.  Tipper, one of our dear little kittens (not being sarcastic here) wakes me up whenever she thinks it is time for breakfast.  Since she can't tell time this can be as early as 2:00 or as late as 4:30.  This morning she got me up by making some ripping noises with the newspapers next to Mary's computer.  I felt so relieved, I looked at the clock and it was only 5:10.  I got some sleep.

After I fed the kitties (at 5:30 AM) I wrapped myself in my old yellow blanket and slumped into that same big leather chair for another three hours.

I was well rested today. 

I'm semi retired and I don't think my bosses care when I start work.   I could sleep later.  It's just a question of convincing myself that it's OK.   And I do need the rest.

I am planning to put in six hours on Monday so that I can reduce my hours on Tuesday when I plan to go in.   I do that because I become very tired once I go in.  I have issues with functionality the following day.  I have periods of being brain dead in the morning.

Not a pleasant side effect.  I'm not over the chemo yet, and I have no clue what to do about it.

A little work never...

I went to work today, just in time for a 9:00 programming project meeting.  The Business Analyst, Systems Analyst, Tester and the Programmer (me) get together to see if they all have the same opinion about what the project is supposed to get done.

I was almost done with the coding, but it was good anyway, and we were all on the same page so the project went ahead as planned. 

It was fun to be at work and after being there for close to an hour I felt my endorphins kick in and I relaxed.  This is in contrast to the last time I was in and my adrenaline glands kicked in and I felt stressed.

So today was better.

I was busy throughout the two hours I was there; I entered at 9:00 and left shortly after 11:00. 

Bone tired.

One good thing I noticed is I didn't eat all that time so my stomach felt empty.  But then I got heartburn and I am reminded I need to bring some Tums next week.

So about two hours in the morning is about all I can last at work before I start to get  tired.

Better than the week before when I put in 3 hours.

I will try again next week, and we can see how that goes.


FYI got a new appointment for my Neurologist March 9th at 2:20.  

It's nice to know....

I went to UNC hospitals yesterday to visit the neurology clinic only to discover that I was a day late.  I had the appointment slip with the right date in my hand, I had simply deluded myself into thinking that the date on it was the 23rd not the 22nd.

My malfunctions multiply. 

Considering the amount of time it took me to recover today, it's nice to know I'm still recovering (not fast enough) from the anti-cancer drugs. 

It's been almost two years since the end of the R-CHOP and maybe a year and a half since the Revlimid. 

And I am still messed up.  I can't really go into work very often or exert myself much doing other things either.

At least I feel pretty good most of the time.  When I don't get tired from something.

Another day at the office...

Tuesday I went to the office.   I got there about 9:10 and left about 12:15 which is about three hours and that was too much.

By the time I left I felt like I was floating, which is not a good sign.

I was exhausted on the drive home and then I had to stop off and pick up some kitty food and treats; and while I was there decided to stop at a New York style Deli for a sandwich and burger for lunch for Mary and me.

By the time I got home I was really exhausted and took a nap after lunch.  I felt very tired this morning and signed onto work later because I wanted to nap.

So it doesn't just screw me up for one day.

It's been almost two years since the end of the R-CHOP and over a year and a half since the Revlimid and I still can't function normally.

They finally got to me....

It was another beautiful day in Chapel Hill, North Carolina, so I took a walk a couple of hours ago.   The usual four or five blocks.  The little temperature icon on my desktop now says 61 degrees and I just went out to bring in the mail. 

The air out in the open is cool and fresh, it's like the first day of Spring.  A couple of our windows are open, so the fresh air is flowing into the house.

It feels like the first day of summer vacation.

I don't know why I feel that good. 

Now that I've set the mood, I can admit that I wasn't able to stay off Skelaxin more than maybe a week and a half.   Sad but true.  Headaches and neck cramps finally got to me.

It's really not amazing how discomfort and pain wears on me after a while.

I started taking half pills, and eventually graduated to whole pills.  It was a real relief.

Sometimes, I don't feel great even if I do take the pills.

I should see my neurologist the afternoon of February 23rd, maybe I could see if there is a stronger muscle relaxant for the really bad times when even the Skelaxin does not stop the pain.   It's probably not appropriate to take the serious pain pills I have.


  

Well, sometimes it hurts a little

After coming off the Skelaxin (that muscle relaxant that I need for my neck)  several days ago, my mood is improving.

When I flossed my teeth yesterday, I could taste the mint. I've noticed my sense of taste and smell being more sensitive to other things as well.  

I do still feel the occasional twinge or twitch of the long muscle on the right side of the back of my neck, pain at the back of the skull where the big neck muscles are attached.

It is as though I were recovering from an injury to the back of my head and a soreness around the spine at the top of the neck where it abuts the skull.

The various pains and sensations come and go; and don't seem to last very long.

The tumor has been gone close to two years, you'd think the soreness would be gone by now. But then my healing abilities have been retarded most of that time recovering from the various anti-cancer drugs.

The tumor was in there and painful for a solid six months or more.

I am thinking the Skelaxin affected my mood, helped with the stiffness in my neck muscles and masked the pain in my neck tissues. 

I will see how well I can tolerate the pain; it may be worth the upswing in my mood.

I actually feel happy now which I haven't felt in a long time.  I feel like some binding has been taken off of my psyche and I'm a bit more emotionally sensitive.  

I look out the window and see the sunlight on the pine trees and the lawn and I feel wonderful.  Not really euphoric (like how the Revlimid made me feel) just enjoying a very nice spring day.

Of course it actually is a nice day. 

I should savor this, I haven't felt this good in a while. 

Surprises of Abstinence

I've been off Skelaxin for a several days now.  At first I had odd muscular sensations around my face and neck and intermittent pain but after a while these faded and I feel pretty good.

I am taking a couple of Aleve twice a day to mask pain that has appeared in various places. 

I think I experienced withdrawal symptoms. And taste things better.

Wonders of the Drug

As you may know I have been on Skelaxin off and on since the fall of 2009.  And an interesting drug it is.  I never really bothered to check it's side effects until today, because the problem that the Skelaxin resolved of neck tension headaches seemed like such a problem that I didn't want to look.

But my prescription has run out, and it has been over a year since I saw the neurologist who prescribed the drug to me.  So I thought that I would try a little experiment and try to get by without.

But let me list the side effects that I found on a very helpful website: drugs.com.  First the light side effects:  Dizziness; drowsiness; headache; irritability; nausea; nervousness; upset stomach; vomiting.

I've actually had some of these: Headache, nausea and vomiting.

The more serious side effects are:  Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); fever, chills, or sore throat; unusual or severe tiredness or weakness; yellowing of the skin or eyes.

I don't think I've had any of the severe problems; but it's not like I really keep track of these.   I wonder if my heart thumping problem is related.

All things considered I feel motivated at this point to continue to not use Skelaxin, just to see what the symptoms of that are like.

I've noticed the occasional headache from the bad part of my neck and I might take an aspirin for that.  Or maybe an Aleve.  But I won't take a Skelaxin.

I visited my oncologist last Wednesday

I visited my oncologist last Wednesday and had a pleasant conversation.  I am still in remission.   I see him in another four months and after that it's once every six months.  I will be seeing him in May sometime which will be just over the two year mark from my final R-CHOP infusion and I will be on the slick road to diminished probability of recurrence.

I like not having cancer.

I still have issues and I'm not sure how much they are just post chemotherapy hangover or some other problem.

I've been experiencing some nausea recently and I vomited once just over a week ago.  To put this in perspective, I didn't vomit from any of the chemotherapy in cancer treatment.  Got a little sick but never took the "plunge" so to speak.

I used to think of myself as having a cast iron stomach and it's not like that now. 

I am guessing that at least some of the problem comes from a habit I developed of taking my Metformin  (it's supposed to be taken with meals) at the beginning of the meal rather than at the end.

I've corrected that, but I'm not better yet.

Some things will make me ill, such as some combinations of food or simply some kinds of food.  It's difficult to maintain the lifestyle of a chocoholic when chocolate upsets your stomach.

Sometimes I don't feel like eating in the morning. 

I am sure I need to change my diet although I haven't planned out how I should.

I visited my regular doctor on Friday and I heard him say my test scores had not gotten worse over the "Season" of over-eating.   They're actually slightly better, but I have to reduce the carbohydrates.

When I have added more cheeses, meats and peanuts to my diet my test scores got better.  All the bad fatty-acid numbers dropped.

My blood sugars got much better.

I am working on changing my diet in that direction, I just hope eating that stuff doesn't make me feel ill.

I am on Barnes and Nobles

On B& N : My Secret Lymphoma

On Amazon: My Secret Lymphoma


From the overview on B& N.

This book is one patient’s sometimes humorous account of living with and being treated for cancer which he likens to having a mistress.   Headaches that began in June of 2009 were not diagnosed as Diffuse Large B-Cell Lymphoma until mid December.   Given odds of 50/50 by his oncologist he describes the tests, bone marrow biopsies and treatments which included six cycles of R-CHOP, four spinal infusions with other drugs and, while in remission, three 28-day cycles of Revlimid (AKA Lenalidomide).   Starting with the R-CHOP treatments he describes the day to day side effects of chemotherapy and his attempts to deal with them.  The remainder of the book describes the aftermath of treatment which lasts much longer than one would normally expect.

I'm PUBLISHED!!!

Shocker!

I'm actually published:  My Secret Lymphoma

"My Secret Lymphoma" has was uploaded yesterday, and I signed on to my email just before I went to bed last night and there was an email from AMAZON that my book was for sale.

The book covers two years of treatment, followup and recovery.


Table of Contents:

• Preface
• Working with Cancer
• It Was Only a Headache
• Cervical Vertebra Spacing
• Kinesis Myofascial Integration
• Begging for Drugs
• A Neck Exam, CT scan and Biopsy
• Oncology, Needles and Tests
• R-CHOP and Intrathecal Mysteries
• First Infusion Posts
• Second Infusion Posts
• Third Infusion Posts
• Fourth Infusion Posts
• Fifth Infusion Posts
• Sixth Infusion Posts
• Blog Posts Before Revlimid
• First Revlimid Cycle Posts
• Second Revlimid Cycle Posts
• Third Revlimid Cycle Posts
• Dropped out of Revlimid Study Posts
• Blog Posts after the Revlimid
• Afterword

 
I will be working to produce a version that I can upload and publish on Barnes and Noble.

Uploaded my eBook to Amazon

Exactly two years ago today (which was a Thursday) I was still having my first chemotherapy (R-CHOP) infusion.

An hour or so ago I uploaded "My Secret Lymphoma" to Amazon.   It may be available to the public in a couple of days if there are no hitches.

List Price $4.99 .99.

Neck Doing Better

My neck seems to be doing better - I forget about it until something reminds me and they if i stuff a couple of fingers in the right spot I can feel it.  I'll mention it to the oncologist when I see him but I don't think it's cancer.

On a brighter note -  I am close to a final copy of a kindle version of "My Secret Lymphoma" and discovered a way to create a version formatted for the Nook.

So when I get the copyright settled, I will publish on both sites. 

Unless I figure out I can publish before the copyright process is complete,  I should publish in a little over two months.

New Neck Pain not as Severe

The new neck pain that I've been feeling over the last half dozen days or so seems to have receded quite a bit. 

There is still a tenderness deep in my neck but not as apparent as it was just yesterday.

I feel good about that.

I wonder what it is?

The "ghost pain" that I first felt on the 20th is still with me. 

It's not bothering me much just this minute, and I can't sense a lump with my fingers.  It seems to be deep in the muscle on the right side of my neck about where you would want to check for pulse.  

I can feel it, with a little pain if I move my neck wrong, bend over so the blood pressure in my head changes or if I palpate the area.

This is annoying, I just had a PET scan a month or so ago that said I was clear.  Now this.  It probably means more scans, and possibly treatments.

Well I see my oncologist on the 18th and I'll let him figure it out. 

Ghost Pain in Surgical Area

It is slightly over two years since I had surgery to take a slice of the tumor that used to be in my neck and I am feeling some residual tenderness and what I can only think of as ghost pain in that area. 

Why should this bother me now?


At least it's not cancer. 

I think I'll take an extra strength aspirin and a Skelaxin to relax the muscles.  Maybe that will help.

Party Down!

I attended the Holiday Party Luncheon at work today, held in the training room and had a couple of hours of fun and frolic with my chums.   It was great.

After about an hour I was feeling a little light headed and very relaxed although my neck bothered me a little.  Now I feel really tired.

As Mary just told me, it will be a long while before I get my energy back.  Until then, I'll forget how any persistent exertion makes me feel. 

And then I'll exert myself and remember.   My neck doesn't feel so great either.

PS: the waiting time for the kind of copyright I applied for averages 3 months.  So I don't anticipate publishing until March.

Submitted My Document for Copyright

Yesterday I submitted my manuscript to the US Copyright office and presumably I will hear back from them at some point.   After that I will upload the file to Amazon and plan to sell it for $5.99 a copy.  Kindle edition only.

Mary tells me it's the price of a Latte.

It's the heartwarming story of someone who gets cancer and doesn't know about it until he's sporadically in extreme pain. 

I tried to keep my sense of humor.

Like so many projects, it is impossible to tell from where I sit if it will be successful, so I live in hope. 

I'll have more details in future posts.

One step closer to a book!

As you may be aware from past posts, I'm turning my blog into an eBook.  Truly the path to publication for the lazy. 

I have had a bit of a milestone in that I have finally been able to tun my word document into all the appropriate files that I need to create a Kindle book.
 
It's still just files on my laptop, but it is a step closer to when I will be able to upload to Amazon and you will be able to download it if you are interested.

I still need to review the manuscript, and I have to copyright it, but I am getting there. 

It's a little shocking to be this far.  It was quite challenging.

Just a little Kink in the Neck

I am doing fairly well, when I stay away from doctors.  I see both my regular doctor and my oncologist in January. 

I think I need to see my neurologist in order to keep the Skelaxin coming.   As ever, I have good days and bad days with my neck.  Maybe one or none (like yesterday) on a good day and then a couple today.

For some reason my neck is bothering me today, both the parts that should have been bad all along (the stenosis) and the new bad (just under my skull on the right side of my neck where the tumor had me for lunch).  

Normally the stenosis doesn't bother me so much.

Periodically I think my neck has been doing OK long enough that I think I don't need the medication and I don't take it.   Then after a day or two it starts to hurt again.

Other than my neck, I'm doing OK.  

I made a lot of progress creating a "test" kindle book from my manuscript.  I kind of balked at the suggestions given in "Kindle Navigation" because they were a little laborious but the advice was worth it.  It only costs 2.99 and it did the trick.

So I am closer to creating a book and publishing it on Amazon.  

Of course, with all the keying stuff in and peering at the screen, my neck kind of hurts.  But I have something I can take for that.

Catch-up and Progress Report

Mary had lunch with some friends today and one of them, Sue, said that I hadn't posted since October 11th.  

I feel like I've been letting people down, so I thought I'd give you a new report.

I have a history of peculiar side effects from a number of drugs that I've tried for various reasons. 

Nexium, for example gives me heartburn, as well as reminding me of the ancient roman practice of 'nexum' which was a debt bond contract where the debtor pledged his body as collateral, and pieces of it could literally be carried off by his creditors. 

Naturally, when my throat was sore treatment began for acid-reflux which at the time must have been the illness of the month. Eventually, due to Mary's urging, I had my esophagus scoped and no damage from that mythical disease was apparent.   I ended up wearing a 24-hour monitor with a little tube that went up my left nostril and down into my esophagus to check levels on a meter.  I needed to write down the times that I ate. 

Eating produced the most interesting sensations because the peristalsis would pull on the tube and I would feel as though I couldn't quite swallow properly. 

Oh the vicissitudes of medical tests!

But I was talking about side effects.  Levitra.

Levitra is supposed to do one thing, provide a certain thrust and parry quality to a certain male body part.  I've tried this drug several times, and when I found that the normal dosage was just too much for me: headache, upset stomach, causes my ears to flush and shrinks whatever libido I have left down to the size of a pea.

Like so many other drugs I've taken, I wasn't sure if I was going to have a coronary.

But, I lived through it and then tried a lesser amount.  Not much better.  It simply was debilitating. 

If I take a tiny amount, I feel a pleasant vibratory sensation in my feet; but I don't think it comes in dosages that small.

Like so many drugs, I shall have to relegate Levitra to the trash bin; or save it until I feel suicidal. 

But I was going to talk about headaches, just to lift the mood a little. 

I have been trying to cut back on Skelaxin but whenever I do that I end up with a worse headache than when I take it regularly.  

It is beginning to dawn on me that I am going to be dependent on a regular prescription for a very long while.   Just to feel normal.

Talk about doctor dependency.

I don't think it's the stenosis in my neck that is so much of a problem, it's that empty spot that used to hold a bit of a vertebra and a bit of a tumor.  It is on the right side of my neck and just under my skull. 

And if I don't feed it muscle relaxants it becomes obnoxious.  Thank goodness I don't have the problems with Skelaxin that I have with Levitra. 

Now that I am NORMAL

I had a physical yesterday with my regular doctor and asked him to help me through the PET scans both from December 28th 2009 and the more recent October 3rd.

I now know about the wreckage of coronary arteries and the sludge in my Aorta which leads me to ask about the places that were not scanned.

Just how gunk-ed up my is brain?.

Is that the real reason that I've become so sloppy in my old age?

My A1C was 7.4 so I need to work on that.

Although I do exercise, if I exercise enough to put a dent in my A1C I will need to spend the rest of my time recovering.  

I plan to be avoiding carbohydrate such as the "sausage muffin with egg" that I have become accustomed to at least a couple of times a week.  I'm not sure the "sausage" part is good for my lipids either.

It's the stuff that leaves you with that good heavy feeling in the gut that's probably bad for you.   After one of those my stomach feels like it has a piece of cast iron in it.


I'm also shrinking.  I used to be 6'5" and I am now 6'4".    I put that down to all the little pads between my vertebra from the chest up that are no longer at their robust former height.

My lipids are moderately bad and my doctor is thinking of putting me on a Statin if I don't improve in the next three months.

I wonder if my liver could tolerate one of them?

Technically, I'm not sure if I qualify for a prescription of Levitra, but I want one.  With all the diabetes, clogged arteries, and cancer treatments, I'm ready for a good time.



 

Blissfully in Remission

A few months ago, Mary and I were going for a Sunday drive near Jordan lake, as we turned onto one of the side roads to come home, I momentarily thought about all the other people I had known who had cancer and died.  It seemed almost like they got better and then it came back and killed them.

My exact thought was: "This could be the end game."

Rather melodramatic when you think of it.   But the headaches have, off and on been both painful and strange.   They show up one place, like in front, and then on the side of my head above my ear.  I get an ear-ache and just strange sensations like tingling or a tactile feeling akin to being touched.


A few weeks ago Mary convinced me to email Lisa and see my oncologist, and  thus it was that I had a PET scan this morning.


A PET/CT scan is so much easier to deal with than an MRI.  First, it doesn't buzz or clang, and there's room enough inside for you to breathe.   Although as a doughnut machine I would say it is about five feet front to back which is somewhat shorter than your run of the mill MRI.

Also you can breathe.  Occasionally.  It has a large doughnut hole which unlike the MRI cannot be mistaken while you are in it for an oddly shaped coffin.   Your nose does not brush the top as you go in.   Your head and neck are not encased in an ancient restraining device that has been updated for the age of plastic.   And they do not give you earplugs that do not work very well.
 
So the PET was relatively pleasant.  Arms over the top of the head and the post nasal drip only made me want to cough and wretch once.  Eyes watering.  

I was served by two of the same technical people that had done this with me before, but this was the first time I noticed that Heather had a quite fetching appearance.  She did seem a little overly ready to help me take down my trousers so the zipper and belt buckle wouldn't mar the scan. 

I arrived at the waiting room about 8:30 and was taken in to "my little room", number 4 to have a catheter put into a vein on the side of my right wrist.  The glucose was tested and came out to be 150 which meant it was good for the scan.  About 10:00 the technician or nurse or whatever rolled a machine in and hooked it up to the catheter.    After testing I was infused with the radioactive glucose look alike drug that the tumor would suck up, if it was there. 

About an hour later I went just across the hall to the the room with the machine and began the process.   I unloaded my pockets, book and jacket onto a chair, was helped by Heather to slide my trousers down while I was under a blanket, and then I was trussed up in straps in much like a hot dog in a bun incongruously wrapped in bandages. 
 
To make a long story short, I am cancer clear.  It's a good feeling. My oncologist is of the opinion that the tumor did damage inside my neck.    
 
When I swing my head a bit from side to side it makes funny cracking sounds, as though I've got knuckles in there.  That is just one of the peculiar sensations that I experience in my neck, aside from the painful sensations that make me think there is something physically wrong in there.

This goes back to the tumor that was eating into my C2 vertebra as though it were its bag lunch sandwich.  The CT scan that I looked at showing little bite marks was taken more than a month before I was first infused, and so the little monster had a very long lunch break to consume bits and pieces.

I know that it grew extensively before the chemotherapy put a halt to it and I will always wonder how much the tumor actually ate.

I may need pain pills, real ones.

I settle now for Skelaxin and Advil. But I still have a few of those Whopper drugs left from the bad old days, and I took one-half of one of those.  I feel some relief coming on.

So slowly.

I just don't like pain. Think of those lucky masochists who love the stuff.

The Schedule has been Rescheduled

Well, I must have been complaining so much about my headaches that Mary insisted I contact someone and get it looked at.

I will be having another PET/CT scan on Monday 10/3 and let's keep out fingers crossed.

Then I will see the oncologist at 1:00 on the same day.  Mary's coming along.

Landerwood Drive

Today's walk was all the way up to Landerwood Drive which is two longish blocks farther than Knob Court which is how far I usually walk.   The walk back was a bit more effort as some hill work was involved.

I had no chest discomfort in hiking up those hills even though I did not stop or slow down.  I haven't gone that far in quite some time, so I feel that this is an accomplishment.   Or a good sign.

Those leg exercises have been helpful. 

I was having some neck/head pain this morning so I took a Skelaxin and two Aleve which eventually kicked in.  It's just mild neck muscle discomfort now that comes and goes.  I'm thinking I will never be free of this.

On a lighter note, Mary has been reviewing my "My Secret Lymphoma" book and has suggested that I include more about what went on at work when this was going on and maybe I need to tell the prospective reader more about how I made the transition from working at the office to working at home.

More to do on that.  Not so close to completion after all.

I've downloaded kindle software to my PC to check the formatting after I convert my word document to the kindle eBook format.  Kindle eBooks are readable on an iPad, iPhone, Mac and of course on Windows (which is where I keep my collection).

I thought I was so close to being done, but it has to be complete before I publish it.

A Note About Headeaches and Such

I have the funniest kinds of painful/tactile feelings in my head and neck and I'm not sure what to think.  Is this the usual bullshit my neck gives me because of the stenosis and the dead tumor, or is it a problem?

I have been away from tumor-ville since spring of 2010 as noted in a number of PET/CT and later just CT scans.  And I have been off drug treatment for over a year.

I should be fine, the way the drugs worked on the cancer, I should be low risk.

But every now and then I have a new sensation in my neck.  The tissues that were hurt by the old tumor just below my skull on the right hand side of the back of my neck bother me.  They still feel sore. 

If I don't take some Skelaxin or more recently, some Skelaxin with Advil I get a headache; and it doesn't just go away with a little time.  It gets worse.

When I do take some Skelaxin, I sometimes feel strange tactile sensations that wrap around both sides of the top of my head. 

Most of the time it's just the neck muscles, and I'm really not worried about them, they've been acting up since the second Revlimid cycle over a year ago.  It is that feeling that there is pressure somewhere in there, right under the back of my skull, or in my skull. That's what has me a little skittish.

Today, while driving to get some groceries, I had what I can only describe as a ghost tumor sensation under some of the muscles in the back right upper quadrant of my neck.  It felt strange and then went away.


My headaches also get worse if I am under stress or if I spend too much time doing computer related work; they simply confuse things.

PS: I am scheduled to be PET/CT scanned in January and we will see then if this is my cancer come back or simply my very messed up neck. 

Saw Oncologist Last Wednesday

I saw, my oncologist last Wednesday and I look pretty normal.  He didn't even discuss my blood work.   I complained about my headache, something Mary had put on the list for me to talk about (thank goodness) and he went over the original PET/CT scan which I didn't read closely when I first saw it on New Year's Eve 2009.  

If I had read it I might have given up hope for walking out of the cancer hospital again and again.   The cancer was much progressed from the November 15th CT scan that discovered the original tumor in my neck.   By the time I was waiting for my first infusion it had wormed it's way around to the left "para-vertebral soft tissues"  as well.  The soft tissues within the spinal canal had increased uptake.  "Numerous foci in the spleen".  One in the liver, one close to the pancreas; and the list goes on. 

What comes to mind when I look back on it is that I am glad I didn't read it.   I didn't have just six.  And the cancer was everywhere.  If I had not been infused right then, it would have gone into my brain.

I would have been a dead puppy.

But what it looks like is the stenosis in my neck was probably there from years ago, but the tumor did things to my neck along the spinal column.  I don't know why the Revlimid made the pain flair up, but I notice that the muscles that were damaged by the tumor are the ones that are a bit twitchy now.   The pain is in the same place and sometimes it even bears a resemblance to the pressure I felt underneath.

It has been over a year since my last treatment with Revlimid.  My neck still gives me headaches.

Incremental Improvements

At this point, over a year out from chemo and in remission, I am working to get myself in better physical condition.  I do this with a pair of old plastic sand filled dumbbells that weigh about 11 lbs and a single fancier dumbbell that weighs about 10 lbs.

I'm surprised at how many muscles I can persuade to enlarge with just those 3 little weights.

I had much success (by my standards) for shoulders and arm muscles and now that I've been trying to get the leg muscles that I use for walking and the back of the leg and butt muscles, I have had some success.  

I walked today and it was so much easier after a couple of weeks of leg workouts.   I just walked to Knob court, but going up that last hill was easy.   When I got to the top of the hill I felt some chest discomfort so I turned around and headed home.  I felt no muscular or bodily discomfort however which is a substantial improvement over just a few weeks ago. 

My next goal is to get more aerobic exercise on a regular basis so I can deal with the "chest discomfort".


I've been there before, this is familiar territory.

Splashing around in retirement

It is so very nice to have taken the plunge (more or less) and retired.  I can nap in the afternoon and I have a new place to work with a lot of green in the view.   I work at my little round table in the morning from 8:00 to noon, although I might start a little early or end a little late.

That little round table had been covered with books and bits of old computers piled together leaving room for the cats to enjoy the view out the window and slouch lazily in the sun.   There was lots of cat litter and just dirt when we finally got down to the actual surface.

But the big thing is I'm not stressed as much and I can work on my new book 'My Secret Lymphoma' which discloses the mystery of how I became ill and managed not to keel over prematurely.

I plan to publish electronically via Kindle.

Waiting for Semi Retirement

Next Thursday is my last day at work as a regular employee and I will be there physically about 4 hours.   I expect a going-away lunch which I am looking forward to.   I hope I don’t become too tired until I get home and can crash.

Then Friday, one week from today will be my first day as a half time contractor which should leave time for writing and afternoon naps.

I have more than a book or two that I would like either to read or re-read.  I have a history of WW I written from the perspective of the Central Powers by an author with access to archives that were available only because of the fall of the Iron Curtin.  I have a number of other books, some of which I haven’t read yet that I am looking forward to.

Working only half a day.  What an idea!

My Oncologist Says I look GOOD!

Well, must be better than last time.

Although I did feel exhausted from the two hour journey to the hospital and back.  I managed to work a bit but I was tired that afternoon and the next day.

I may look good, but I have not recovered.

When I saw my oncologist last (February 28th) my white cell count was 3.9 which was an improvement over the previous 3.7.   This time it was 4.3. 

Normal is 4.5-11.0.

I must be getting better.  Well, sure.  The last time my white cell count was close to this I was about to start Revlimid and it was 4.0.  Now almost a year off the drug and I am beginning to approach the normal range.

But I could be described as a success because the lymphoma did not come back.

Well, lucky me.

It is almost the end of June and it is beginning to dawn on my that I will be retiring as of July 1st.  I do not know if there will be any contracting on a part time basis after.

Not that it matters.  Except that I could be fantasizing about retirement with more gusto if I knew for sure.

a little followup for my friends...

I seriously doubt that anyone is reading my blog anymore.   Even I haven't looked at it in a while but the effects of the cancer treatment still linger, and it is a year and a few weeks since I began the treatments with the dreaded Revlimid.

I had headaches that started during the revlimid treatment and thanks to the fact that I'm not on it anymore, physical therapy and muscle relaxants, I feel OK.

Would you believe that at one time I was one of those health fanatics who believed that I could never take a pill every day.   Every once in a while Mary reminds me of that.

In the past couple of years I have literally been on enough drugs to kill some people.  I feel very lucky to have survived the cancer and both the R-CHOP and Revlimid.

But one thing that did not happen before the revlimid is that my vertebra did not seem to slide around quite so much.  Not so I could feel them.

I've been walking more and using some light weights because I need to get stronger.  I'm also stretching more to help with my neck. Not moving is not good for the body.

I'm eating more broccoli just because it's healthy.  

Some strength is slowly coming back although I still work from home and I have no idea if my immune system has improved.   I'll find out more when I go back to visit my oncologist on June 1st.

I have given notice at work that I will retire July 1st and I may work for my current employers on a contracting basis after that.  Sporadic and temporary work.   Presumably part time.

The things driving this are that my energy has not come up to it's before-cancer level, and I develop headaches from working extended periods on a computer.

I will keep posting on and off because I want to keep a record of how I'm doing in relation to how long I have been off the drugs (I'm also writing a book).

Over a year since the last R-CHOP and I'm still fatigued

It is over a year since my being infused with the last R-CHOP chemotherapy - and it successfully eliminated the lymphoma.   Six infusions and three months on a clinical trial with Revlimid and I am still not ready to go back to the office.

I work from home and I still feel fatigued and I have questions about my immune system.

My blood results at the end of February were not encouraging.  My immune system has not crashed, but I wouldn't describe it as robust either.

At this point I'm thinking I'm not going to be over this for a while and perhaps I should simply learn to strategically nap in the afternoon.  Or earlier.

How will I feel when early August rolls around and I will have been off Revlimid for a year?

Something of a milestone

It has been almost a year since my last R-CHOP infusion and I had something of a milestone this week as I was able to walk two blocks further this week on each of my two walks.

Up until now, typically I would walk four blocks and need a lot of recovery time and maybe take an hour to rest.  But I was able to walk six blocks and felt reasonably well afterwards.

This is not to say that recovery is just over the next rise.

Today I did my usual shopping trip after Mary and I took one of the cats to the vet early today and I crashed after the last store.  Nausea, confused thinking and abruptly tired.

I'm at home, I'm resting and feeling better, except for the tired part.  Still tired.

Time to turn of the computer and nap. Cogito, Ergo....  How do you say in Latin, I think therefore I sleep?

Adieu my poor little port...

Well, the port removal wasn't as psychologically traumatic as I was letting on.  Or was it?

I remember I would feel it uncomfortably scrunched against my shoulder when I rolled onto my right side at night. Sometimes it's the annoying things that you really miss. 

I have had that port since January 13th of 2010 which makes it over a year old; and it has been gone for over a week and a half.  The incision is healing nicely which surprises me considering that other bruises in the very recent past have taken a month to go away.

The big bruise has gone away and the other odd looking spots are clearing up. 

A couple of the stickies in the middle came out way too early when I took the first bandage off two days after the surgery.  Sticky tape strips are a series of long skinny white adhesive strips covering the incision.

So I now have a bit of a scar in the middle of the incision.   The outside stickies held pretty well, and were on days longer. 

Actually, it will all be closed and that is the only thing I really care about.

I have had innumerable "port accesses" where a special needle had been inserted, and since my port was a double port (I like to say double barreled) both ports would have to be flushed; and I would get two needle sticks for the price of one.

Ouch.  I actually prefer the other sticks.  The ones in the forearm, wrist or hand.

Maybe neither are really great.

The port was the last little remnant of cancer treatment that tied me to the UNC Cancer Hospital and required me to go in monthly for flushing.  


Now I'm trying to figure out what to do with the rest of my life as I recover from the R-CHOP chemotherapy and the Revlimid.   I had six R-CHOP infusions and three cycles of Revlimid (about 3 months worth) and I am not very fit for work. 

I had no idea that recovery would take so long.  Issues include: not being able to walk as far as often as I would like which would help with the diabetes; my muscles being sore for a long time after I walk; feeling tired if I walk a day or two in sequence. 

The R-CHOP ended in mid April of 2010; Revlimid ended in the first couple of days of the following August. 

I'm not over it yet.

On top of this I have stenosis in the neck and thoracic region of my spine which predisposes me to headaches when I have a stressful situation; or focus too much on the computer I use for programming.

So I am seriously considering retirement; or at least a half-time retirement if possible.  Primarily because it would give me more time to sleep and tend to recovery.

Like last year I am looking forward to the beach as a place where I can feel the openness of the sky above the Ocean on a daily basis.  At least for a week.

I'll bring plenty of drugs for my neck: don't want any stinky little headaches showing up.

 

Thinking about that little sore spot where my Port used to be.

It is the second day of my port being gone and I am simply emotionally devastated.  There's only a sore spot left where it once was, and I know they won't put it back on for me.   Every once in a while the area stings a little.  When I reach over to touch it there is a raised spot where some gauze is located and it's almost like I still have a port.

I am sure that these feelings will pass.

I wasn't supposed to take a shower today, so as we were going somewhere I took pains to wash my hair and other places without doing a full shower.   An odd process, but one that I know I can do again should I have to.

Tomorrow I am supposed to change the bandage after I shower with it on.   I think I have about a weeks worth of bandages and I should change the dressing each day.

I find it strange and peculiar that "dressing" goes both on a salad and on a wound.  What were they thinking.  Let's hope that I don't get my salad and wound confused in the days ahead.

In Memory of My Port

My cute little port was installed January 13th 2010 and now is out on March 8th, 2011.   I have had it over a year. 

It was a sad moment but this morning between 9:30 and 9:45 my port was removed from my upper right chest/shoulder.  I got a look at it as it was a little gummy, covered in ooze and damp looking.  It actually looked a little bug-eyed (it's a double port).   A purple little bug eyed monster.

Mary, my fearless driver, compatriot and wife, and I arrived at the hospital at 7:12 and ambled our way up to the escalators and the first check in station.   I was number 12 on the list and was given a little blue laminated piece of paper with that number on it. 

After a thorough processing, and a long wait, we were headed to Vascular and Interventional Radiology where we were checked in again (although without the paperwork) and redirected to the waiting room. Where we waited about 10 minutes before  I asked somebody at the desk labeled "Check In" if we were in the right place. She said that we were and there was a phone around the corner (behind a wall) where we could call the Catheter Lab and tell them that we were waiting.  


If dentists were real doctors they would force you to strip stark naked and wear a bib while they did tooth extractions.  This was a similar experience.  At least they gave me a blanket.   And let me keep my diaper like undies on.

There was the little room with the curtain and the instructions and I found myself propped up on a gurney being rolled down one hallway and up another.  I was thankful that someone who knew the way was pushing.

I had been lost in this hospital before; hoping I wouldn't step out the wrong door and be locked out and stuck on the opposite side of that monster from my car.


Eventually we were outside a room which looked like an operating room of sorts.  There was a long skinny table in the middle of this room that had six to eight flat panel monitors across from where the wielder of the scalpel would stand.

The nurse or tech who had pushed me was so short that she could easily step under the monitors.

But I actually never left the gurney.  That's where they did it.

She was there, then the guy who was going to clean my chest area was there and got busy and I was duly cleaned up and they put a mask on me to keep my dirty breath from contaminating the area that was going to be open soon and ready to receive my germs.

A blue sheet of something antiseptic looking was put over my blanket and what looked like blue dish towels were draped over the area bordering the cutting space.

I don't know how long we waited for the surgeon but eventually he arrived and proceeded to keep up a running conversation while he worked on me.   Asking me about what state I was from and when I answered Wisconsin he started talking about the areas the he was familiar with.  I'm sure it was to keep my wide awake mind off the fact that I was being sliced open and a once useful leftover from chemotherapy was being pulled and pried out of me.

The pain killer was the same one dentists use - lidocaine.   And it reminded me of a tooth extraction - one of the big ones.

The basic method was to pull the catheter - a long plastic looking hose that went into a deep vein.  I asked them and they said they were not going to do anything like suture the vein.  The vein would heal itself.   They just basically yank on it until it comes out.

That old double barreled port was a bit of a problem to get out.  It had a lot of scar tissue around it and I could feel it being tugged, pulled and what felt like pried off my pectoral muscle.

But it finally came out and the doctor held it where I could see it.  Viola!

Surprisingly it really was once more.

My CT scan came out clear.  I am cancer free, in remission and will probably stay that way.

In my discussion with my oncologist, if I don't have a strong feeling about it, that was the last CT scan until I have symptoms.

On another note - since I am cancer free and have been at least since April of last year the port will be coming out.   Next Tuesday.

Well it's been fun but "I won't have anything to write home about".   But I am getting a book together and will publish it sometime within the next year.

For those of you who want to have a copy of your own "My Secret Lymphoma".

Once more into the breach!

Monday is my next CT scan at 11:00 in the AM which means that I shall have a very early breakfast because I can't eat X number of hours before.  Fortunately it is not a PET scan which is dependent on glucose uptake and has more stringent fasting requirements.

I see my oncologist at 2:00 so I will know the results which I expect to be clear.  I am an optimist and damn foolish too.

I will have to schedule surgery at the main hospital to remove my port.   On the one hand I shall be relieved to have it gone, but in some ways it has been my umbrella on a stormy day.   Like so many folks I believe that if I take an umbrella with me on a stormy day, the rain will hold off.

I know that this is a specific kind of fallacy, but I can not remember what fallacy.  More likely I never knew it's name.

Having the port removed is as psychologically jarring as having it put in.   But it does have to be flushed once every month, so it requires me to take repeated trips back to the hospital.   When I would rather be sleeping.

I shall simply have to get over it and get on with life.

It will be a long wait...

One day soon, probably at the end of this month, I will provide the results of my next CT scan, and possibly an overly dramatic description of port removal.   I am betting that my lymphoma doesn't come back and I trundle on my merry way; laughing and cracking jokes.

The physical therapy was over last Friday and I don't have to go back until or if I have a problem.  My neck is still something of a pain but it's not as much as it once was.  I use a heating pad a lot and do some exercises that my physical therapist gave me and one or two Yoga poses.

I have stayed off the skelaxin for the better part of a week; and I believe sleep better because of it.

The only thing that actually causes a problem is work under certain circumstances such when my stress level goes up (hot project syndrome) or I type and look at one area of the computer for long periods of time.  Stress can give me very bad headaches and 'terminal-focus' as I like to call it requires me to hold my head in one place and hold my shoulders up to reach my laptop.

Fortunately I'm an old guy so I will probably choose to retire sooner than I would have otherwise.  But I like to spend all my time on a computer anyway since I like to write. 

So I seem to be well on my way to normalcy; if not already there.  

Vertebral Vertigo

I think my family doctor has rather high expectations for physical therapy.   He thinks I won't need muscle relaxants. 

There have been beneficial effects although the therapy hurts a bit sometimes.

During the session a couple of days ago I asked my PT guy what he was doing and he said he was pressing on ribs (just below the shoulder) to move the vertebra.  He also pressed areas of my neck rather painfully (I'm not one to complain) to move those vertebra.
 
He also applied some traction with a towel wrapped around my head to stretch out my neck.

This is in addition to some things he did with my head that I can't describe very well.

My neck cracks in the oddest way when I lean it over to the left and then right side. My PT guy said I don't have to worry about that.  I have a lot more mobility now and my neck feels more relaxed.

I've had some improvement, but I have good days and bad days.

If I sleep late (like today) my neck feels much better.

Stress (like meetings) cause pain.   I wonder if working itself is the problem?

Adventures in Neurology: Tendentious Spinal Tendinitis

I had a neurological exam a couple of days ago with a young and attractive neurologist.   A pleasant break from all the male doctors and therapists I've been seen by recently. 

I always prefer to disrobe for ladies.

Naturally a neurological exam entails a certain little metal hammer with a rubber stopper on both ends of the head and my first thought was 'lead hammer treatment' which is I know spurious and pointless, but it came to me nevertheless.

Hammer just below the knee, some places on the arm and this attractive young woman kept hammering her thumb nail when she was doing part of my arm.  She said it was so she could feel the tendon, but it looked like it hurt.  And yes I asked her about that.

I saw my MRI and and it looked as though my spinal cord was being squished inside of my spinal canal.  But it would be inadvisable to try surgery  because that could make it worse.

I don't have any of the more serious symptoms such as tingling or numbness in my arms or legs; weakness in my legs.   Inability to do fine finger coordination (as in typing).   And many others.

I just have headache and a stiff neck.  I've noticed that my neck cracks a lot. 

Therapy: stretches, physical therapy, maybe a little yoga.  I also have prescriptions of muscle relaxants to soothe the knotted muscles.

Neck Stretch Manifesto

Oddly enough I discovered something about my neck condition on Monday and which is that high pressure meetings give me a headache.  My project has to be done by the end of This Week and I got a couple of people to finish it with me.  Plus the Systems Analyst showed up for the meeting and my boss was on the phone.   Isn't there a ROCK SONG from the 80's called PRESSURE?

Well the headache and tension lasted into today and when I got to Physical Therapy I mentioned that I had discovered something that causes my headaches to get worse and the PT guy said something to the effect:  that's great - now you can avoid that.

Yep.  Try to avoid that.

Well there were some more exercises and my PT guy did some things were he held my head and had my try to turn it or move it in certain ways.

He also wrapped a towel around my head and pulled it up and back.  Which helped with the part of my back just below the neck that felt knotted up.


So on my way home I was able to turn my neck much more easily and I have much more flexibility.

I still have headaches, but I bet if I could get rid of the meetings they might get better.

The Neck: Such a Tender Little Thing

It is too early to tell if I've made a great deal of progress in the physical therapy.  Although I have had interesting conversations with the therapist.   He's from California and lived a long time in the Bay Area and we share an interest in Asia.    He spent some time at a university in Japan.

Although I now enjoy the pleasure of mild to moderate headache daily, compared to the pain and anguish caused by my neck tumor, it's not much.

The therapist did some tests to check outside the spine at what seemed to be pressure points to see if when he pressed hard there was some pain other than muscle pain and there was not.  Which I guess means that this is a mild case of whatever it is.

Moderate pain is always better than severe pain.

I inquired about the neck stretching contraption my doctor had been describing and he said he thought I wouldn't need that.  Just exercises.

There are muscles that are commonly weak on most bodies that my therapist has given me exercises to strengthen.   There are also exercises that stretch neck muscles and I believe pull the vertebra apart on one side when they pull them together on the other side.

Another bit of advice is to do the exercises when I feel a headache getting worse - and that was useful advice.

My therapist pointed out when we were talking about the stenosis, that it extended beyond the cervical area of the spine to the thoracic area just below.

I could feel headaches getting worse with the R-CHOP infusions, but the severe pain didn't start until the revlimid.  So I guess the damage is done and I will have to recover, probably slowly.

This condition leads not just to headache but cramps in some of my neck muscles and the muscle above my collar bone on the right side.

One thinks of cancer, then the cure but not the side effects from either the cancer or the drugs taken to rid ourselves of it.   It is as though the shadow of the disease lives with me still.

If I exert myself for several hours I still feel weak.   But I guess if the cancer therapies kill fast growing cells, they do something to the regular cells.

I wonder what it is?

Happy New Year! A little New Year/Old Year Retrospective:

One year ago yesterday I had my first R-CHOP infusion and I cannot tell you what fun that was.  I think I pissed off the head nurse.  Either that or she liked me.   It is very hard to tell.

We arrived in the waiting room of the infusion center and a hospital identification band with my name and number was clipped around my left wrist.   We took a seat on a couch and I looked around at the other patients.  One that caught my eye was a very young woman who looked in her teen years.  She had long blond hair and was dressed in comfortable looking gray sweats.  She was with her parents.   

I was haunted by the thought of someone so innocent and attractive having to endure what she was about to go through.

Of course I have no idea what regimen she was going to be on but I thought she was awfully young to have to face the consequences of this kind of therapy.  But I suppose cancer drives us to embrace horrid therapies.

In due time my oncologist showed up with an envelope of prescriptions and the pathology report from the PET scan which showed that I had many more tumors than the one that gave me headaches.

Altogether Mary and I counted six tumors and as Mary looked though the document she noted where the tumors weren't.  They seemed to have missed the places that would be difficult to treat.

But I had one in my liver and one in my spleen which might explain some of the days that I had felt very bad.

My oncologist also explained the drugs that I would be taking each day for up to the first five days.  Chief among these was a heavy duty steroid prednisone, a choice of drugs to relieve the nausea (one was zofran and the other compazine) and a big orange pill which was I believe allopurinol which is used to treat gout.  This last drug was to counteract the problem of the tumor cells breaking down and putting all kinds of things that should be inside of cells into my bloodstream.

I think we were some of his first patients because he only gave me 5 days worth of prednisone and limited quantity of zofran because it was expensive.   We ended up having a little talk about how he was increasing our costs because of how he was prescribing his drugs.   My oncologist had been a researcher in Seattle before coming to Chapel Hill and I do not believe that he had spent a great deal of time with human subjects.   Patients.

He is Asian, and I believe hit it off with my wife better than me.  Although he tolerated my rambling.   Mary and I both liked him immediately.

We were called into the infusion center and I was shown to a very comfortable reclining chair.   Mary had to make do with something merely functional.

The ubiquitous question when you are in a cancer hospital and they are about to take blood or infuse you is: "Do you have a port?"

That is because at least one of the drugs is essentially caustic and the other drugs are not good for your veins.

They put the needle into a vein near the surface so they could tell it was in the vein and let it drip saline for a while.   The nurse explained the nature of the drugs - if they put it in higher near the elbow and missed the vein the joint at the elbow might need replacement.

It gives new meaning to the words "dangerous drug".

Since I had a port for the following infusions I can tell you that it is indeed better.  But it still hurts when they put the needle in.

The head nurse explained that they would titrate the first drug because some people have a bad reaction to it.   They explained that they did this for patients initially so that they didn't kill them.  Or some such words.

It could be a fatal reaction.

So we waited, and waited and it dripped and dripped and I had absolutely no reaction.  They kept asking if I was cold and if my heart was causing me to rock side to side and I always said no.

What I did notice within a couple of hours of this was that the headache was going away and my neck was feeling better.   A little part of me was thinking that all they needed to give me was that one drug and the cancer would go away.

We left the cancer hospital late and because it was new years eve we had to venture into the parking structure which is up a long ramp and some distance away.   The side effects of the drugs hadn't hit me yet.   As we walked out of the hospital one of the nurses who had stayed late to handle my case turned to us and said good night and Happy New Year. 

Mary and I stopped off at Burger King that evening after visiting the drug store to get my batch of prescriptions filled.   I was destined to sleep in our "Venus fly trap chair" a big stuffed leather chair and ottoman that is very comfortable and I would sweat up my T-shirt and shorts that night. 

I developed cancer sometime about my 60th birthday and it wasn't treated for six months. It gave new meaning to the term "New Year" because although I would get up the next morning after an almost sleepless night feeling horrid I had a new lease on life.

Within a week the swelling on the inside back of my throat had gone down and I could sleep in a bed again.

And then it was just a matter of making it though the treatments.  Or so I thought, considering that the treatments themselves can be physically devastating.