Finally, at the beach!

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

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

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

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

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

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

the wonders of modern diagnostic equipment

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

Headache? Cancer patient? Check for brain tumor!

Well I don't have one!

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

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

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

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

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

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

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


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

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

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

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

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

It's the revlimid stupid!

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

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

And the revlimid may be helping me.

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

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

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

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

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

Instead I'll be enjoying myself.

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

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

Or six months from now?

Whoops

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

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

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

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

another day without a headache

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

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

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

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

 

ex post painful

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

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

Time to enter this into my log.

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

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

I should probably take some aleve to the beach anyway.

not that I'm a little paranoid about this?

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

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

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

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

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

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

have my little friends come back to me?

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

Then action follows if action is possible.

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

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

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

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

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


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

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

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

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

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

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

is my feeling crappy a side effect?

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

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

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

Is that silly, or justifiable insanity?

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

PS the rash is improving.

all about a few hairs

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

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

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


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

Maybe not being on revlimid 4 days is also helping?

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

Am I cancer free?

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

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

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

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

silly little side effect

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

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

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


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

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

On to the rest and recouperation

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

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

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

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

counting down the pills

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

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

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

Sounds familiar doesn't it?

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

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

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