TRUE ADVENTURE REQUIRES AN UNCERTAIN OUTCOME

December 31, 2010

Radiation Treatment Process Details

These three photos show some of the radiation equipment used to nuke me each day now.  There are two technicians involved in the process. The procedure goes like this:

1.  I have to be there at the Radiation portion of the cancer center at the hospital at 7:15A each week day.  By this time, I have already sedated myself with meds.  I am not in a stupor but significantly relaxed...and about to lose a lot of my memory of the next 2 hours or so.  There is one patient before me.  One of the techs comes to get me as soon as that patient is done with his fun for the morning.
2. I enter the radiation room and go get my special teeth guards and tongue hold-down devices from a storage area and position them in my mouth.  No talking after this...more grunts and growls only.
3. I remove my shirt.  The other patents put on one of those stupid hospital smocks with their butt showing.  I have done all of those I am going to wear since all this started so I have told them to deal with it and let me go without a covering.  Besides, for me with my phobia issues, the cold room helps keep me from imploding during the treatment.
4. They assist me lay down on the movable horizontal portion of the radiation machine.  We have formed a special headrest that was formed to my head shape so that my head does not roll around.  It also slightly elevates my head...a good thing with the phobia issues. Once my head is in position, a pillow is placed under my knees to slightly elevate the legs at that point.
5.  Then the fun begins.  A special tight fitting mask was earlier formed to perfectly fit the outline of my head and upper chest.  The technicians get it now and fit it over me.  It takes a minute for me to move my head around so that it is in the right position so that the mask can be pressed down on me properly.  The mask fits right up against my skin; not with the small air space they suggested might be there when first discussing this nightmare months ago....
6.  Now that I am in the mask properly while it is held down on me by the tech, he or she then uses the numerous locking screw downs that firmly lock the mask to the horizontal surface I am laying on.  As you can see in the photos, I do have openings for my eyes. I can slightly flex the mask by moving my chin if I need to swallow...which at this point is becoming more and more difficult as my throat reacts to the radiation I have already received. The tech now observes if a number of narrow beam lights projecting from the ceiling are hitting special marks made on he mask....sometimes they tattoo the marks on the patient but I "negotiated" that out of my Disney package....
7. The techs leave the room and go to the control room.  The surface holding me is lifted a bit and then it moves me into the radiation machine....we refer to it as the TOMO machine. 
8. A CAT Scan is then made taking about 3 minutes.  Yes, a CAT Scan five days a week for 39 sessions.
9. I am then taken back out of the machine while the technicians use the CAT Scan to make absolutely certain that my head is in exactly the right position to match the radiation beam firing pattern programmed for me.  One tech comes out of the control room stands beside me and reads various readings off the TOMO and casually speaks to me (secretly praying I will not pick this moment to have a panic attack) while the other tech is working to make the final Go or No Go decision.  The time to do this varies each day but rarely tmore than 5 minutes or so elapse...thankfully.
10. Once they decide to go ahead, the tech tells me that decision and leaves the room.  I am then again moved back inside the machine and the radiation begins.  I should mention that there is always a lot of noise inside this room, lots of air conditioning, etc.  While I am inside the TOMO, I also have a lot of different noises going on from virtually all directions going around my body.  The radiation beams are fired from all sorts of angles to hit the many many spots targeted to kill the cancer.  The radiation takes just under 6 minutes while feeling like 15.  I now know to recognize that certain sound that signals me that the radiation is shutting down and the exist is about to occur.  I do keep my eyes closed most of the time in the TOMO but do occasionally open them...probably the craziness in me to see if doing so will make me blow up into a full on panic attack.  So far, no.
11. After I am out, one of the techs rather quickly unscrews my mask and lowers the movable surface to a point where I can ease off.  I then remove my mouth guard, wash all the pieces and put them away ready for the next day.

I have worked out an agreement with the radiation center that makes sure that everyone dealing with me knows about my extraordinarily acute phobia issues.  Also, after a couple of incidents where I was told stuff during treatment that I later had absolutely no memory of, everyone knows that nothing is said to me that is important unless it is written down and pinned to Johnny's shirt for his mommy to read - you get the idea.

We leave the radiation center at this point and go home where I pour a can of "food" into my stomach feed tube. 

Then back into the car and off to Doc Q's office where Nurse Mary weighs me in and then takes me to the infusion room to give me a liter of saline solution and a anti acid through my chest port.  That hydration goes immediately into my blood stream. 

During the weekends when Doc Q's office is closed, I report back to the hospital to receive the hydration.  I get the hydration 7 days a week.  While a lot of trouble, the specialist promise it will make the next many weeks of radiation go easier on me.  That's all I needed to hear to agree to do it each day.



                            Photos of the radiation process
Techs preparing me for radiation....fitting my mask in place





December 24, 2010

Christmas Eve update

It sure does not seem like Christmas Eve...sigh.  Both Lieska and I have noticed that the day has just arrived and we missed all the usual spirit, music, etc. I do not mean to suggest I am surprised what with all the running around we deal with each day now that I am in radiation.  But, I guess I just did realize how intensely immersed in all this we are.  Normal life stuff just is not in our radar.  Very little else is discussed, etc.  Beating cancer is indeed a full time 24 hour a day job.

Yesterday, I had my first chemo infusion to go with the radiation.  And it was a BIG dose for sure; about 20% more than what I was getting during the chemotherapy cycles. Fortunately, I only received one kind of chemo drug instead of the three received during the chemo cycles.  Unfortunately, it is the one that causes the most sever nausea...sigh They dripped loads of saline solution and anti nausea meds in me also. Now we are waiting with fingers crossed to see how hard it hits me.  I have my marching orders for a full regimen of daily anti nausea meds that will hopefully keep me away from the howling bowl until the the body is used to it in a few days.  I frankly do not know if the radiation stirs up the nausea now that the chemo is in me.  I haven't had any nausea during the radiation period up to this moment.

Finally I have a regular radiation treatment time at 7:30A each week day.  We haven't gotten used to going to bed earlier so that we can do the early wake up but that will come soon I am sure.  I have to get up about 2 hours early so I can start my sedation meds so I start the day in a blur and do not quite come out of that until late afternoon.  After radiation, we drive 15 minutes over to Doc Qs place for a quick health check up and a liter of hydration drip that takes about two hour.  And then back to the house a bit before 11A.  Makes for a long morning...for Lieska.  Remember, I am pretty much in La La land through it. 

Lieska wants to continue doing some work; she finds it helps to get away from all this.  I miss her but there really isn't anything she can do for me after the radiation and hydration and I agree it has to be a good thing for her to get way from thinking about this cancer all of the time. 

We didn't get a chance to do any Christmas shopping for each other so we decided love will do just fine like it did 18 years ago when we didn't have money for presents.  :)

Merry Christmas to all.  Thank you all for the many kind messages and wishes throughout this adventure.

December 21, 2010

Radiation continues

The two day break from the radiation was a good thing.  I am going to learn to look forward to these weekends; that is clear to me now. 

Today went as planned with radiation around noon at the hospital and then a two hour hydration drip at Doc Q's office.  Tomorrow will be the same. I snoozed through the hydration - remember I am taking that heavy duty sedative.  I take the sedative about 11A and then live in LaLa land until about 6 or 7 that evening. This is some weird existence.  But at least I am able to do what I need to do each day.

Some early side effects have shown up. The first sensations of a sunburn can be felt on my right neck and cheek.  More troublesome is the thickening of my saliva...did not expect this one for a week or two.  By the way, I am now full into my efforts to try and lessen the damage to my mouth, jaw, teeth and saliva glands. I try and rise my mouth each hour I am awake using a brew of water, salt and baking soda.  I occasionally also do a mouth rinse with a medicine that keeps yeast from growing on my tongue. 

My daily hydration is also an important part of making this journey a little easier the doctors say.  So, once a day up to 7 days a week, they pour a liter of water into my IV port located in my upper right chest. It is amazing that they can dump a liter of water directly into a vein going to my heart like this every day.  But, I don't argue because I feel better after every single one of these fill ups; no exceptions.

While I think I am feeling fine emotionally, I notice that holding a conversation for more than 2-3 minutes is almost impossible for me; in person or on the telephone.  I cannot find words to describe it but it worries me because I am concerned old friends are beginning why I sound so blah and so "not me".  Also my short term memory just continues to deteriorate.  I feel like a live in a little moving 24 to 36 window.  Seriously, if someone were to ask me to tell them about my last week, I absolutely could not do - period.  It frightens the hell out of me!  The doctors, nurses and social work tell me its normal and to get used to it.  Well, that isn't gong to happen...this feel so awful.  I think it also plays into this semi anti-social communication thing I am gong through.

The radiation folks have all been awesome dealing with me and my issues.  Each time a treatment is complete, I have this momentary "high" that comes from realizing that we; the techs and me...got through one more without me blowing up into a mind blowing anxiety attack.while inside the machine.  I thank God for each one of those moments of relief.

December 17, 2010

No crispy pieces

Whew! Three sessions down and I have yet to smell a crispy piece of me or feel a burning sensation inside my body.  The radiation team seems to be everything I could have asked for and more.  They all have been briefed by my terrible phobia issues and working there away around it with me. 

I do not delude myself, though.  I know these are the first...and last...good days of this extremely valuable part of killing of my cancer.  So, I am am absorbing the joy of not having any pain or nausea at this time which frees me to smile a bit and dig out of some depression that has been holding me back.  I am finally able to eat some real food so we are working to stuff as much of that down as we can before mid-next week.  Next week brings back the long day of chem infusion into my body to work with the radiation. So nausea is once again just around the corner.

Somewhere out there in the next week and a half or so will bring new side effects from radiation that I have no experience with.  All the nurses and doctors have gone to great lengths to describe what is coming and what I should do each and every moment of the coming many weeks.  Lieska has received a lot of discussion from them as well knowing that her role will be incredibly essential for me to have a chance at this.

It does feel like I am at arguably some sort of a half way point of all this touch treatment.  Supposedly, the tough half is about to unfold.  I think I will pretend I do not know that :)

December 15, 2010

Death Ray (for the cancer) Sesson one complete

The first session of combo chemo/radiation is done. Even better, no duct tape was required, none of the equipment in the treatment room was damaged, no radiologist were injured and I pretty much grinned through the whole thing. I had taken my full load of sedatives of course.

Tomorrow we play the whole thing out again. And each week day thereafter until we have done 39 of these....some time in February. But, tomorrow I am going to secretly chuck 1/4th of the sedatives into the woods and go in that much less doped up to see if I can take it. If it turns out I made a mistake and I cannot ultimately lay down for tomorrow's treatment, so be it. I just have to experiment so I can work away from so much sedation; it is horrible being so brain-dead.

And, like, what are they going to do? Fire me? Punish me and give me cancer? Beat me with a medical grade cotton swab? Or bill me for the wasted session. Hmmm, lets see how that pays out.

"Dennis, your total charges so far are $Gazillions. Now, because you obviously got a hairball caught between your meerkat size brain and your sedative bottle, we are going to have to charge you for that missed session $2,300. Really!? Yes. Is that with or without fries? Dennis, you do not seem to be taking this serious serious! Really?! Sigh...never mind. By the way, have you seen Darth Vader this morning? I need to check with him about adding some cool graphics on this plain looking mask you folks fab'ed for me. What the heck are people going to think if the Paparazzi get a shot of this and go public!? Oh, is it a problem for you if I screw on a little 1/4 wave 2m whip; it gets lonely in there while you boys are firing all those radiation death rays through my head, neck and upper chest."

Yes, yes...you are right. I am feeling pretty good having made it through this first day. I have been told that I will have one or two weeks where the treatment side effects will be very small. But, with total certainty, after that, its going to be very difficult, painful and trying. So! Today I chose to smile, be grateful, give you and me both a little laugh. We can cry, wring our hangs, shout Why Me, and crawl on all fours later. But, this is my pink cloud moment and I will damn well take it!

December 14, 2010

Radiation Begins Tomorrow

Surprise! I need to report that my combination chemo/radiation treatment at the cancer center will begin tomorrow.  Being caught off guard, I am working on some serious anxiety lessening strategies tonight; I needed to get psyched up for this waaay earlier than expected. 

So, here we go head locked in that masked screwed down to the flat surface and stuck inside the radiation machine. I so want to kill off this cancer and live but oh how I have wondered if I will be able to make it through the next 8 weeks....I am about to find out. 

Everything that makes me whatever it is I am today tells me I will indeed cowboy up and get through this...I am apparently just not listening yet :)

Another surprise today - I was informated that the total number of days in the radiation machine has been raised to 39. Treatments are given 5 days a week... it looks like this adventure will go into mid-February. 

After that, I pray for a good PET scan that cannot find any cancer. 

December 13, 2010

Dec 11-13, Saturday/Sunday/Monday

The cancer center took me in under their wing over the weekend, thankfully.  The center, where my radiation will take place, naturally must have an outpatient area open each day for the patients needing some sort of care.  Since the place now has me listed as one of "theirs" because I will be a daily patient there, they treated me like a wounded family member each weekend morning.  I received hydration and meds for nausea each morning. All that hydration and anti nausea juice allowed me to take in the canned liquid food through the stomach feed tude. I checked my weight this morning and was really happy to see I had picked up 2 lbs over the weekend.  I look like a *^%# train wreck still taking place but I feel better this morning. Doc Q and Nurse Mary or Dawn will check me out this morning and give me another fill up of hydration.  The mouth feels more like it has a forest fire blazing away instead of the surface of the Sun so maybe real food is only a couple days away...Man, I miss real food.

The nursing staff at the center used our time there to give it to us straight on what was just around the corner during the radiation.  The first thing they did is make sure to tell me that I  need to quickly make sure my doctor gets my radiation treatment right by remembering to issues a order for daily after radiation. The nurses are certain I will survive the side effects of the chemo/radiation much better...and they darned sure ought to know. 

Since I was feeling better today, I drove to this appointment and then made a quick trip to my office to sign a pile of documents and wish everyone a Happy Holiday.  It was so good to see everyone again. I did not even try to hold back a happy tear or two.  Life is too short to not show you care...

December 12, 2010

Friday report

As I came to, the one sensation I was most aware of was that I had a cold something next to my cheek.  Thanks to the architects who designed the medical building that houses Doc Qs Huntington Beach location, I was laying face down on some lovely fake blue granite tile instead of vinyl on the Infusion Room’s bathroom floor.  I was covered in a cold sweat so that probably made the coolness even more pronounced.  It is funny how sometimes in life even a cold bathroom floor can be such a perfect place to be…

That was Friday about 6:30 P.M. when everyone on the Doc’s staff was likely already home or at Holiday party someplace.  Except for Nurse Dawn and Nurse Cheryl who have earned my eternal love by deciding to let me make an emergency like trip to the office to see what they could do for me to try and get my post Cycle 3 healing going.  I was in really bad shape now down more than 10 pounds in the last week, lingering nausea and stomach problems from chemo and frighteningly weak.  I had not “walked” in 3-4 days; instead I stumbled along with my feet spread a bit for balance, taking those old folks kind of straight-leg steps while reaching out for a wall or something else to guide me along. 

I laid in my bed or recliner for too many days thinking “just one more day” thereby putting myself in a nasty negative G dive that I could not pull out of.   I gave in and asked Lieska to try to get me into Doc Qs even though it was already 3 PM Friday.  My normal Doc Qs was basically shutdown for the weekend so they had referred us to the HB office.  Quick consideration there confirmed the obvious; there wasn’t enough time for me to get there and for them to do any kind of effective treatment.  That is until someone apparently got in the conversation and volunteered to stay after hours for me.  That someone obviously was Nurse Dawn or Cheryl.

We got there as quick as we could.  As soon as Dawn weighed me in, she knew I wasn’t just being a cry baby this time.  So she stuck a needle in to my Chest Port thingy and started pumping saline solution into it thus immediately into my blood stream.  We talked at length about what was going on.  After considering all those details and having Rachelle, Doc Qs Physician Assistant check me out, they added a couple more bags of wonder juice into a tangle of plastic tube Y connections.  If these women had been ham radio operators I would have been proud to see what a wonderful scene they had created and plugged into my chest!  It matched any good rat’s nest of cables, etc., seen behind a ham’s radio table.

Actually the conversation with Rachelle turned out to be a very touching moment.  While we talked, I began feeling so bad seeing how deeply these people cared and how intense they were to help me. I was so sorry that I had to bother them this way and couldn’t hold back water from leaking out of my eyes as I said that as well as how grateful I was to be in that chair safe and under their care.  I quickly turned away and tried to brush water away before she would see it.  Rachelle tried to pretend she has not seen by riveting her eyes on her clipboard.  I knew she had seen, though, because when she did finally look at me again, her eyes were full of shimmering water. Then this angel touched my hand with a special softness as she rushed off; probably the kind of touch these people fight hard to contain within themselves so that they can somehow remain strong when people like me, not one damn tiny bit as tough as I thought, need their care.

After the infusion of the saline and other drugs was complete, I was feeling better.  Still weak as can be but no nausea, I was ready to go home after a quick stop in the restroom.  What I thought was going to be a quick sit down with Mother Nature went bad….real bad.  After winning the battle against vomiting since the middle of October, without any warning, my stomach exploded upwards. It was crazy, just wham up it shot!  I had to dive off the toilet I was parked on…shorts and pants at my ankles...and vomit what tiny bit I had in me.  That quickly turned into horrible dry heaves that went on and on with Dawn and Cheryl outside the door calling in trying to figure out if I was okay.  No surprise to me, as weak as I was, eventually my arms and head slide off the bowl and I collapsed to the floor. 

Or I guess that is how it went – I sure do not have any memory of thinking, “Hey!  I think I’ve had all the fun I can take screaming at the top of my lungs into a porcelain bowl so I’m going to nick a little nap now down there on that pretty blue tile floor.  What a sight that had to be, snot running out of my nose, slobber out of my mouth dripping onto the floor, and my underwear and pants still all the way down tangled in my feet.  Another UTube moment lost, huh?!

Speaking of bathroom, I think I will wrap this up for now…

December 9, 2010

One step backwards...sigh

I spoke too soon.  The weakness took me a step backwards since the last report and I cannot seem to start the post-chemo healing.  My mouth lining and tongue are a total mess.  All those surfaces are rough, feel thick and like leather.  The can food stuff is creating a lot of stomach yuck and constant reflux that burns my mouth like hot acid.  Lieska and I tried to find something....anything...that I could swallow this morning but it turned out to be a humiliating experience as I tried to take each small piece.  I sat in a chair like a blubbering baby trying to take some jello or hard boiled egg whites. I know I will heal up once again soon good enough to go on to the next bag of thrills but I am really sick of this.

Blood lab test results came in yesterday and dashed my last hopes for being allowed to attend my company holiday party Friday for at least a few minutes.  I guess actually every doc and nurse in my world knew that it was out of the question but I kept hoping that I would come out of this last chemo fast enough to have an immune system that could take being close to so many people.  Oh well, I will just plan on having a great time next year...

December 7, 2010

Late night Tuesday

Finally after what seems like an endless number of day, I sit here in my recliner thinking maybe, just maybe, finally I am going to get some nausea relief. I seem just a little more clear-thinking and without as much stomach distress. Lieska took me to Doc Q's so that Nurse Mary could remove my chemo pump and give me 1000cc of saline hydration and a IV anti-nausea drug.   I had another problem this cycle that she could not do anything about; swollen throat.  The swelling has reached a point where I can feel the scars of my initial throat surgery rubbing against the other side of my throat each time I swallow.  There does not see to be anything to do but watch it to make sure the throat does not close up much more before make a quick visit to Doc Z's or the ER.  The swelling does not seems to be getting worse, though, so I am not worrying this issue.

I have not had any regular food since last Wednesday but the scales at Doc Q's said I only lost about 5 pounds, thankfully.  If my head continues to clear up, I will check emails, voicemail, and try to begin to ease my way back into life.  All the lost sleep and nausea, of course, I am really weak and useless for now. 

December 5, 2010

Just hanging in there

The nausea just will not seem to go away yet so I am hanging in there by not moving around much, taking the meds.  Thanks for the NFL to fill in a bit today to help move it along....each day gone is one day closer to Good Days in my book.

December 4, 2010

Going to be tough cycle

As planned, I spent most of Thursday with Nurse Mary and the staff at Doc Q's office receiving my infusion of bug juice.  And, as promised, the dosages were raised to their max....a fact I became well aware of Friday morning.  I woke up Friday feeling pretty good with just a small headache and a now familiar feeling of being a bit on the dingy side of what I claim to be normal for me. 

Around 11A, Lieska and I headed out to go to my work office to pick up some things.  Not a good idea.  We had to turn around within just a few miles because nausea rapidly started to build up.  It was all downhill from there.  Fortunately, I was able to get the nausea under control before having to spend time at the ol’ howling bowl by taking some of the medications given me for just this type of situation.  A couple of rubs on that Lucky Rock undoubtedly helped, too.  After a nap to settle myself, it was time to head to Doc Qs office for hydration and the bone marrow shot.

Saturday brought on some serious chemo brain as they call it when your memory is just trashed.  I am sure I drove the family crazy repeating questions.  The nausea was kept just under the danger threshold most of the day which equates to a day sitting and laying around like a rotting vegetable.  It’s now about 4A and I can’t sleep....part of what is now a normal routine during the chemo sessions.  I was hungry, too, so I just poured a couple cans of nourishment into my stomach through that tube; traditional foods would lead to consultation at the howling bowl I fear.

Doc Q and I met Friday went I was in for the bone marrow shot and hydration.  It is now serious time for her to make some decisions regarding the chemo drug I will receive while undergoing the radiation therapy.  Also, she needed to decide on how I would receive the drug.  The chemo selected, unfortunately, is the one that caused my current nausea but she and Doc C, the Radiologist, believe it to be the one to best enhance the radiation treatment chances of killing off my cancer.  They decided to administer the drug to me over a 5 hour infusion session once every 3 weeks or so during my radiation course.

I also had to make a very difficult decision regarding a second but optional drug to receive during the radiation.  This particular drug has been used with some degree of success to limit some radiation permanent damage to the saliva production organs and the skin in the treatment area.  It has one promised side effect; bad nausea.  Other possible side effects that have been encountered at the radiation center include full body rashes, lowered blood pressure and other issues that have required hospitalization.  Doc Q left the decision up to me.  After wavering a couple times, I decided to forego this drug after deciding I had enough to worry about just trying to get past my phobia issues so that I can do the radiation.  I decided adding optional nausea on top of unavoidable nausea from the mandatory drug just was not worth the odds of any guarantee of limiting radiation damage. 

So, I am told to expect "thick skin" in my neck area. Fine, it will go nicely with my thick head.  I am also now committed to carrying around a bottle of water with me the rest of my life.  Done.  Next? 

December 2, 2010

About that Lucky Rock

When I mentioned the Lucky Rock that was loaned to me, I forgot to describe it.  It is a B I G Lucky Rock weighing in over 3 pounds!


I am one fortunate guys with this much luck on my side, so many good friends and relatives pulling for me, and a strong spiritual base to carry me forward.  Life is Good.


Now I  need to rush off to let Nurse Mary pour that chemo-cocktail into my heart so it can spread it throughout my body to give the cancer a worse time than that juice will me...

Chemo Cycle 3 Begins

Thursday morning I will return to Doc Q's office and spend 6 hours with Nurse Mary kicking off Chemo Cycle 3 by taking two heavy duty drugs by IV through my chest port catheter ; this time full dosage.  At the end of the day, Mary will once again hook up the darned carry-around chemo pump with drug No. 3 - this one now also at full dosage. 

I have sent an email to Forrest Gump asking him to open the box of cholocate so I can see what side ettects, etc. will fill my next 7-14 days.

Thankfully, a very close friend of my in CT has so kindly mailed me her Lucky Rock.  This isn't just any rock.  No way! This rock has been her lucky rock that has saved her from much heartache to say nothing of possible death.  She tells me there is plenty of luck left inside it even though she used up most of the stuff on the outer surface.  That rock sits right next to my head on my bed stand.  The loan of this Lucky Rock is for the remainder of my treatment.  I'll take that for sure.  The Lucky Rock will return to CT after my treatments are over; hopefully still loaded with plenty of lucky to take care of this good friend for years to come.

More time with the Radiation team

I spent another two hours with the radiation team at the cancer center this morning.  We did the sedative again because today was the big day - try and form the mask plastic around my head, neck and shoulders.   Thankfully, with the sedative strong enough to knock out a moose, I was able to lay flat and allow them to form the damn think about me.  Once it was formed, it had to be left in place over me 15 minutes to harden.  The team was wise enough to very quickly cut out eye holes as soon as the plastic mesh material was over my head....that probably saved me from going banadas and destroying all that expensive gear trying to get up and out of that room!

Of course, tonight, after getting that sedative out of my system, I had to check with Lieska to see how much fun I had.  She says things went pretty good, nobody got hurt and the mask-making work is complete. 

Next radiation stop.....the real deal.  We still start my first radiation treatment December 15.  Apparently, cancer does not take time out for Christmas and New Year.  No surprise there...sigh.

Giving Hypnosis a try

Tuesday I had my first session with a Clinical Hypnotherapist - we'll call him Doc B. We have prepared a series of sessions to deal withe my radiation challenges based on a phonbia that keeps me from being able to lay flat with my head and shoulders locked in place. I have no previous history with hypnosis but I am including this work to make sure I do not leave any stone unturned. I will go through a number of session with Doc B; I am eager to see if this work will lead to some relief with this huge problem.

November 29, 2010

Overdue update

I apologize for so much time between blog updates.  I got wrapped up in some Good Days and forgot to get back here. 

The side effects from Chemo Cycle 2 just kept coming!  It was so different from the first cycle.  Finally, the side effects started to ease up on me Tuesday last week.  I returned to the cancer center Tuesday to begin working with my team there to figure out how to get past my phobia that will not allow me to lie down flat on my back....a BIG challenge.  They had me take a sedative.  It worked good enough for us to do some practice time on my back going in and out of the radiation equipment.  But there was a price for taking that heavy duty sedative.  I only vaguely remember the practice at the cancer center, have no memory of eating lunch after the practice session, and have only tiny moments of memory of visiting my cancer dentist and of going to Doc Q's so Nurse Mary could draw blood and do a drip to hydrate me.  It's amazing to lose almost an entire day!  Actually, it’s a bit frightening.  Lieska says that most of the time I appeared to be functioning and communicating normally....except when I kept falling asleep eating a meal I have no recollection of.

While I am delighted that we found one way to get me through the radiation treatment, there is no way that I can take that sedative 5 days a week for 6 weeks.  Doing so would mean that I would be a worthless veg as well as have little memory of that entire multi-week time period.  And I wonder what would be left of my mind on the other side of treatment!   So, the radiation team and I are committed to doing some more practice sessions until we find a way to get me through those 6 weeks.

In the mean time, we are moving forward with making my radiation "mask"; the final assault on my mind....and the biggest one.  Wednesday this week, after the practice session and while I am fully under the influence of the sedative, Doc C and the radiation team will lay me on the flat board-like body support that goes in and out of the radiation equipment.  They will take a special piece of plastic with a tight mesh pattern and heat it up to soften it.  Then it will be placed over my head, neck, and upper shoulders and pressured to form tight around that part of my body.  After the plastic hardens, it will form a mask that, when placed on me when I lay down, provide a means of keeping my head and shoulders from moving more that 1/16th of an inch during the radiation treatment.  The mask is locked down 9 different places to the flat table I will lay on. 

The mask is necessary to lock my body in place so that I do not move while the radiation beams are doing their job blasting.  If I were to move while a radiation beam is fired, I could be very seriously injured if that beam were to strike my eyes, spinal column, or brain.  So, doing the radiation without the mask is just not an option.

But wait, THERE'S MORE!  While under that mask, my mouth is full of upper and lower teeth guards designed to keep radiation beams from reflecting off my metal fillings and BBQing the inside of my mouth.  But wait, THERE'S EVEN MORE!  To make sure my tongue doesn't get cooked during all this, another special piece of plastic is inserted in my mouth to push the tongue down and locked tight against the lower part of my mouth.  Of course, this makes swallowing nearly impossible while laying flat for about 15 minutes 
  
Talk about the worst possible scenario for a person with my phobia!  I could not have dreamed up a worst possible nightmare.  I have dreaded the radiation since first learning the details.  I have even had to consider that I might have to take my chances with the cancer and not be able to go through the radiation.  I am so happy that the radiation team at the cancer center has decided to dedicate time to working with me until we find a way to get me through this.  Even now my eyes fill with emotional wetness thinking about the terror of all this and the determination of those people to help me find a means of doing it.  It is obvious that the cancer center staff has never seen anything as severe as my phobia but, thankfully, even that does not deter them. Together we will find that answer; I am certain of it. 

I did learn some more about the permanent effects of the radiation.  While not too pleasant to think about having to deal with those changes that will affect me for the rest of my life, they are unavoidable and far better than being dead.  End of discussion.

I did get two fishing sessions in; both without fish to take home this time. Howver, both were very relaxing and did make me forget about all this for a few hours. One of them was a trout fishing tournament.  My buddy Jerry from work offered to do the tournament with me and take care of the anchor heavy-lifting.  I think I spent more time sleeping in the boat than aggressively seeking a money fish as witnessed by the picture to the left that Jerry took.  That umbrella was needed to make sure the ol chemo infected skin did not light up like the surface of the sun and get me in big trouble with Lieska and maybe half of my 13 doctors!

Chemo Cycle 3 begins Thursday December 2.  Here we go again!  I wonder what surprises this session will hold for me.  lololol   We better get this radiation thing worked out because after Cycle 3 is over and the body recovery reasonably complete, the Big R is next on the agenda.

November 22, 2010

No cancer in the new lump....Life is Good

Good news! The biopsy on that new lump came out clean; no cancer.  Life is good…
Today I met with Doc C at the hospital Cancer Center. Doc C, my Radiologist, and I had met once before back in September before my neck and throat surgery.  We needed a go-over of that meeting because so many things have been discovered or changed since that first meeting.  Fortunately, while I was there, he was able to check with Doc K who did the needle biopsy last Friday to get the results.  As you can imagine, hearing the good news was a big load off my nerves. 
Doc Z, my Surgeon, and Doc C will have a chat this week to determine if the lump needs to be removed; cancer or no cancer. I am almost certain they are going to elect to keep an eye on it instead of removing it at this time because doing so would delay the start of chemo/radiation in late December. 
I will return to the radiation center tomorrow to do a test run in the radiation machine under sedation to see if we can figure out a way to get me past my massive phobia that, at this moment, will not let me get into position and go through the upcoming daily radiation.  I feel a little better about this crisis today after hearing words that assure me Doc C does indeed understands the magnitude of the problem. After our time together, he told me that a lot of patients have varying degrees of claustrophobia that challenge them during radiation.  However, it is clear to him that the severity of my problem exists within only 5% of all of the people who have claustrophobia. Having lived with this almost all of my adult life, his conclusion comes as no surprise to me.
 I will give a run down on the chemo/radiation treatment after I understand what is coming, when it is coming and what is it going to do to me both temporarily and permanently.

November 21, 2010

Good Days coming?

Maybe the Good Days are close….finally I was able to have some scrambled eggs and a few pieces of bacon for breakfast this morning.  The eggs tasted like eggs while the bacon tasted like.....well, nothing I have ever tasted before!  But, hey, that is progress - one item of real food rolled past my taste buds and actually tasted like something I recognized.  AND the stomach let it stay down there!  This is extremely good news to me. 
I have lost over five pounds since Chemo Cycle 2 started – not a good thing.  I need to get stabilized quickly and get those five pounds – and more – back on before Cycle 3 starts December 2. My mind is more than ready to think about gobbling down KFC, hot dogs, hamburgers, ice cream, etc. I am just not sure my stomach can back up my mouth, though. J
Doc Q says that she going to hit me full bore with the max dosages of my three chemo drugs.  Earlier, Nurse Mary said that I will not regain my strength and energy back to pre-Cycle 2 levels…that is just the way it is as the cumulative hammering of the treatments stack up.  Yes, indeed I need that strength back!
Most of the brain blur seems to have cleared up overnight and I have a peaceful sense of calm as I sit back to watch the Minnesota Vikings on NFL TV on that new big HDTV we picked up to make these days pass faster.  I was born in Moorhead, MN right across the river from Fargo, ND (for your movie buffs, Yes, my family hunts just outside Brainerd, MN) so the Viking allegiance is there to stay.
Saturday was a day with a mixed bag of nausea and fatigue.  The meds kept the nausea down below a breakthrough level, thankfully.
However, Saturday early AM was something else!  I woke up about 3AM with some cramping and need to head to the bathroom.  The cramping and related effects just got worse and worse.  I knew that if the downward spiral continued I would soon begin some really violent vomiting.  Slipping into an almost third person mental state I recall making a conscious decision that I was going to fight this.  I recall going down the complete inventory of anti-vomiting actions I had collected in my mind should a moment like this arrive. 
I made myself stagger to the recliner in the adjacent room and trying to get control of my breathing. Then the cramps would win and I would run back to the bathroom to sit again. Then back to the recliner. I was trying to be quiet with this but Lieska woke up. Moments later the cramps demanded a return to the bathroom. Back to the recliner, now too weak to walk by myself, Lieska held me up.  I asked her to not panic, to be calm and do several things for me.  First we tore off my PJ top; I was drenched in sweat and knew that if I could cool down, it would help keep me on the NO side of vomiting. I was fighting the urge to pass out but kept talking to myself as Lieska did the things I asked her to do.  First we put cold washcloths on my forehead.  When that had only a minor postive effect, we added cold cloths on the back of my neck.  Back and forth to the bathroom two more times with little Lieska struggling to keep me from crashing into the walls or crumbling to the floor.  We opened the bottle containing the “last chance” nausea medicine and I washed down a pill. Of course, the “wash down” meant a new attack of nausea and another trip to the toilet was necessary. Back to the recliner. I had Lieska bring my computer in that had a Guided Imagery CD locked in-place. The CD was developed for chemo patients to help get them through chemo nausea. I barely had the awareness to be able to get the CD started but once I got it going, I forced my complete focus on the words coming from the laptop speakers. Slowly I was able to get the nausea back under my control.  Lieska put a sheet over me in the recliner as the sweats stopped. Not wanting to take even the slightest chance that I would lose control of my body, I had Lieska bring my earphones and a heavy blanket so I could settle into the warmth and comfort of the recliner. 
I drifted off to sleep and Lieska climbed back into bed; this memorable moment of my cancer was history.  I scored it a big win.  I labeled all that cramping, nausea and fluid lose as the body dumping a huge load of the chemo and dead cancer cells from Cycle 2. The nausea fighting bag of tricks worked.  The Guided Imagery training I am receiving from the Cancer Center was validated solidly making it now a permanent mental skill in my arsenal.  And Lieska proved to herself that I am not going to die during an episode like this and that she could be a part of the team I need to get me through these moments. 
With the worst days of my cancer treatment still ahead of me, I am grateful for the challenge the early morning battle laid out. It proved to myself that these doctors and nurses have taught me some skills to help get me through the six solid weeks of Dark Days ahead.
And now back to football Sunday!!!!

Thanksgiving in Turkey, North Carolina some day

I woke up thinking about our new vacation / retirement place in Turkey, North Carolina.   I smiled when I thought about being there for Thanksgiving holiday....maybe next year...and doing some operating on the ham 6 meters band.  I can already hear all the funny remarks I will hear when I wish others a Happy Thanksgiving from Turkey, NC!

I cannot remember if I shared some photos of the 6 acre county place in NC about 40 miles inland from the coastal city of Wilmingtion, NC. 

Here is a link to a few photos:   http://s821.photobucket.com/albums/zz140/k7bv/

November 19, 2010

New Lump Biopsy

This morning my family and I went to the hospital so that I could have a needle biopsy procedure done on a new lump that has appeared below my right ear.  This is the same right neck area involved in the cancer surgery performed on September 24th.  I was happy to have today’s procedure done by Doc K, the Pathologist who did the first comprehensive biopsy work that resulted in the discovery of the cancer back on August 17th. 

Doc K will report his findings from today’s biopsy to my Surgeon Doc Z on Monday or Tuesday.  So, like the first time we went through this uncertain time, my nerves are stretched taunt as the hours slowly go by waiting for that telephone call.  I do not let my mind spend much time thinking about where we might have to go with treatments, etc., if that call from Doc Z doesn’t result in a whoosh of relief, a shared laugh and joke or two between him and me.  One way or the other, I eagerly await the news so that we can continue moving forward!

Dark Days drag on

I just cannot seem to dig out of the Dark Days and make it back up to Good Days.  I guess this second chemo treatment with the increased dosage just going to drag on for awhile.  I have only had one small meal of regular food during the last 10 days.  All other nourishment has come from a can funneled down that tube into my stomach.   This incredible sensitivity to smells is wild beyond belief.  If there was a prize for having a nose like a dog, I’d be a player for the trophy.  My family is going nuts, of course, trying to not create some sort of food smell, etc., that will get a whiff of and go into a panic attack to run away and find some spot in the house where I can escape.  Totally unreal.  
I spend nearly all day sitting or lying on the bed just too weak to do anything else.  Man, I hate this worthless feeling lying around like a slug!   My mind is screaming for (1) some energy and (2) the ability to have some real food.  Oh well, maybe tomorrow this round of chemo will have done all it cancer killing and begin to wash out of my system and let me do some healing.  As I always say “Ya Gotta Believe!”
I am eager to be in Good Days and enjoy some fresh air, maybe wet a fishing line, try and help out online with work. 
I remained humbled by the number of kind messages that continue to come my way from so many people.  I am so blessed to know so many good people….

November 16, 2010

Chemo Cycle 2


Brother Larry snuck a picture while I was getting some fluids via IV...and sleeping
The chemo pump I have carried for the last five days was disconnected from my body today…thankfully.  This second chemo cycle is playing out quite differently that was expected.  The nausea and bone pain was down considerably from the first cycle.  On the other hand, my general condition and overall weakness was measurably deeper than the first cycle.  I am just now at the bottom and feeling fragile – for the lack of a better word.  Anything can send me to the bottom so fast.  Smelling food takes me from feeling pretty stable to crashing down on my knees with weakness that sweeps over me.  It is so hard to describe how a simple whiff of something cooking can send me rushing to my room to slam the door and escape.  I end up on the bed almost in panic trying to get a grip and regain a sense of stable feeling in my mind.  The last time this happened, this evening, a simple smell knocked me down for about two hours.  The only food I can take in is through the stomach tube; this has been the case sense last Thursday.
I seemed to be hit hard with dehydration this cycle.  I went in yesterday for a two hour IV feed of saline.  Unfortunately, I had to have another infusion of liquids today after the pump was removed. 


Once again, I am blessed to have family in town to help with all this running around. My brother and sister in law Susie (who was such a big help when she flew in after Mom’s heart attack) are in from Alaska. 
I have to get my determination back solid on track now that hopefully the worse is over for the second cycle.  Even though I have one more chemo cycle to go, I must meet with my radiation team and do all work we need to do to prepare our plan…and me…for the onslaught of six weeks of daily radiation…except weekends as if that makes it better. J
I apologize for not being able to put something on the blog during the Dark Days of this cycle.  It just is not possible to do it when I am trying to hang on to just staying inside the bubble of stability.

November 12, 2010

Bone Marrow Kicked in Gear

I just returned from Doc Q's office where I received my shot that puts the bone marrow in hyper drive to generate white blood cells....and will give me bone and muscle pain for the next 5-6 days. Nurse Mary also pumped a quart of saline solution into my blood stream through the IV to make sure I am plenty hydrated for the weekend.  She also check the chemo pump I am strapped to for the next 5 days to make sure the little bugger is dumping the drug into me per the plan.

So the "Dark Days" start tomorrow morning.  Actually, in spite of this session being predicted to be tougher than Cycle One, I am thinking that may not play out.  I went into Cycle One in much worse overall condition because of the recent three surgeries and the infection around the stomach tube already starting to flair up.  I am hoping for a little luck that would make this session no worse than the first. 

Ya Gotta Believe!!

November 11, 2010

Another lump...sigh

I’m sorry I did not share this info earlier…I guess I wanted to live in those Good Days before moving onto the next challenge.  J
Yesterday afternoon, I went to see Doc Z, my Ear, Nose, Throat surgeon. I have a new lump on the right side of my neck just below the ear lobe. It is just inside the area the surgeons opened up. Damn!  I became aware of it about a week ago.  I monitored it to make sure it was not just something I was imagining or some temporary reaction to the recent surgery.  Doc Z checked it close and then we chatted for most of a hour.  His bet is that the lump (that feels a lot like the lumps that turned out to be cancer tumors in August) is instead some scar tissue build -up and not a tumor growing.
As I write this, I am in Doc Q’s, my Medical Oncologist, chemotherapy infusion room…you remember – the room with the recliners and that forest of metal poles instead of pleasant trees.  Today is my chemo Big Day; 6 hours of chemo dumping into my body.
Since this chemo session was scheduled for today, Doc Z and I decided to see what happens to the lump during this current round of chemo. If the lump does not disappear during the chemo treatment days, I will have a needle biopsy of the lump done next Friday at the hospital so that we can get quick results.
So Chemo Cycle Two is in process.  All together now; let’s do a little chant. “No puking, No puking, No puking….” 
(a few minutes later….)
Reflecting on the chant thing, I subsequently have concluded that only a cancer patient in chemo could see the humor yet seriousness of those silly words. J

November 10, 2010

"Good" days photos

Earlier I mentioned some enjoyable "good" days involving operating my ham radio on Sunday and going fishing Wednesday.  Here are a few photos of those days of healing for the Chemotherapy Cycle 2 that will start tomorrow.

K7BV/6 ARRL 2010 CW Sweepstakes


K7BV/6 ARRL 2010 CW Sweepstakes Patio Antenna
Irvine Lake 11/10/10 Morning Catch
5.5 lb and 2 lb Rainbow Trout

Life is Good...


  


November 8, 2010

The Hair is Falling, The Hair is Falling!

Check your tickets, people!  Whoever had Saturday November 6, 2010 as the day my hair starts to fall out is the Winner. 

After returning from Irvine Lake, I headed for the shower. The "hair" moment had arrived.  Even though I knew it was coming, I have to admit that seeing my hair coming off my head and into my hands as I washed my hair in the shower hit me like a ton of rocks .  I watched my hair wash off my hands, fall to the tub and wash down the drain.  At first I sort of laughed realizing this moment had arrived. After a few hands full of this, the laughter was gone; replaced by a gut grabbing jerk back to the reality that I have cancer and it will kill me if I do not do everything my doctors tell me to do to beat it. 

After a very nice morning out to the lake, reality set back in.  Not enough to ruin the glow of feeling good all over but enough to put my feet back on the Planet...

Four days of Good!

Oh oh, I have been feeling good and forgot to update the blog and say that!  My brother called to tell me that he thought it might be nice to talk about the good days instead of only the bad days…and he is right. 
The last four days have been really good for me. I am very grateful for that.  Because my chemotherapy that was scheduled for last Thursday was moved out one week, I have had an extra week for the old body to rebuild.  Lab tests Friday confirm that all is well with the blood again after the last chemo thrashing.  And I feel like it!  With the exception of some expected slight weakness, I loved feeling like my ol’ self these four days!  My spirit is back up where it needs to be to whip this cancer, thank goodness.
So - I did some things I have been longing to do for weeks and weeks.
Saturday, I got up ugly-early and dragged Lieska out of bed.  I drove us out to Irvine Lake, the place where I annually recharge my batteries after 30+ weekends of Amateur Radio conventions, shows, and gatherings for my employer, Yaesu. We had breakfast at the old fashion grill inside the tackle shop, renewed old friendships with the lake crew who know me by the nickname “Trout-manic” and then took a walk out by the lake to breath in all those special smells and sights.
This lake is only about 30 minutes from where I live but a great Trout lake with regular fish caught weighing in over 10 lbs. I have fished this beautiful lake hard for 3 winters now and know a lot of the hot spots and little secrets needed to have a good chance at getting my five fish limit. Forever bitten with a competitive spirit, I enter as many Trout fishing tournaments as I can each year. My goal is to win as much money and prizes as possible to offset the money I spend on gate fees, bait, breakfast burritos, and boat rentals. So far, I have only once taken in enough to equal the outgoing…not bad...its almost like getting paid to go fishing to relax!
I start my chemotherapy again this Thursday so I am planning on going out to the lake Wednesday morning about 4AM to be up front in the line waiting at the gate when 6AM rolls around to let us in to go to our favor spots.  Because of the cancer chemo treatment, I am apparently way sensitive to the sun. That means I will have to get my line in the water and catch my limit before about 9A when I will have to call it a day out in the good outdoors…sigh.  That’s okay, just being out there doing something that was a normal part of my life before the cancer is going to be a BIG up for me!
Sunday, I got into my travel hard-side suitcases to dig out some of my ham gear.  There was an Amateur Radio competition taking place that has been a part of me since 1962; the year I received my first FCC license to operate in the ham bands.  This competition is called Sweepstakes and is a Morse code event; my favorite type of radio competition. I won the Novice (newbie) category in ’62 and have enjoyed competing in this event as often as possible ever since.  Outside antennas are not allowed in the community I am living so I assembled an antenna I keep for emergencies.  It looks like a stick of aluminum. I put it on a plastic lawn chair and leaned it against a piece of the patio wood.  Not much of an antenna but enough for what I had in mind. It was great fun tuning the bands searching for my many competition buddies…I found about 100 of them in the few short hours I was able to sit down.  Some of these people go back over 40 years with me! Many of them seemed to know about the cancer and took time out of the high pressure stress of competition to wish me well and chat for a few moments.  Whew - their words really touched me in a big way and got some of that water running from the eyes again.  Life is so great that it can allow a couple guys to say to each other stuff like, “Love ya, Man” over shortwave radio for the world to hear…and care less what anyone thinks.  Love you, too, Guys!  I want to live past this cancer and I want to enjoy more camaraderie and continue the fun with you for years and years to come.  Thanks for the taste of why I need to hang in through this. 
And, God, thanks for putting me together in a way that allows me to get out of myself long enough to feel such incredibly strong emotions and appreciate the courage and humility to admit it.

November 4, 2010

Feeling better

I woke up this morning feeling as close to "normal" - whatever the heck that is - as I have for weeks and weeks.  This is the first sunrise that is not accompanied with pain in over 3 weeks.  The feed tube apparently never has been right and has been the source of my most intense discomfort.  Do not get my wrong; the chemo side effects have not be a cake walk but none of those side effects included actual pain, per se.  It is amazing how after weeks of constant pain, my nerves are just shot.  I guess it is a body reaction to dealing with constant pain and likely a different body reaction than occurs when we have a sudden blast of short term high level pain.

Anyway, I might actually venture out of the house today to go find a recliner that is going to be trusted with getting me some sleep in the not too distant future when the combo chemo and radiation starts.  I already have a lot of sleepless nights walking the halls and hanging out in the living room cause by just the chemo. I think a recliner in another room with a TV to stare at might be the answer for me getting more sleep.  Certain Lieska would be better off without my early morning disturbances.

I did do some things to put the brakes on my mental outlook downward slide.  The staff at the Cancer center is well-equipped to deal with patients who suddenly decide they would rather take the easy way out and just let the cancer decide if they will live or die.  That accurately describes how I felt late last week and on through the weekend.  Today, I feel more like me wanting to visit the some-day retirement place in NC, maybe try to go fishing in the next week or two.

Maybe more important, I feel like I have let a few others try or actually encroach into my areas of responsibility where I work; something that makes me very unhappy because I have such strong specific boundaries on how I like to see things handled for my much-valued customers.  I feel like I have not been watching out for them as close as I like to make sure that they are treated in the manner they have become accustomed to over my four years as their advocate inside the company I work for. My guilt about this should serve as a good kick in the butt to shake off the fog and get back in the grove.

November 2, 2010

Escape from the hospital

I busted out of the hospital about 7:30 last night which is a good thing for me and the hospital staff.  I must say that my general impression of the nurse care during the four days dealing with this nasty infection was no where near as favorable as it has been with my cancer care nurses.  I do not know if these folks are just plain less competent or the cancer care nurse are a significant cut above the norm.  But, I promised to report my experiences as I see them throughout this cancer ordeal; the good, the bad, and the ugly.  Do not get me wrong, though.  I DID have some nurses who were terrific but many more who I judge as barely at or below being totally competent.  My judgement measure is simple - would I trust my life in their hands?  Too many made me want to stealth into my clothes and walk out like a visitor returning home.

An example; I saw the tube that comes from antibiotic and hydration drip bags and feeds into my chest catheter tube dropped by two different nurse and hit the floor!  Holy crap!  One nurse wiped the tip off with alcohol as I watched in horror, too weak to stop her in time, as she plugged that thing back into ME. The other at least had enough sense to disconnect every tube in the system and hook up new tubing.  Of course, he soured the show of brains by just tossing the disconnected tubing over on the counter next to the sink in my room never to return and put that contaminated death weapon into the proper disposal container.  You stick a contaminated tube into a patient and you are as guilt of attempted murder as pulling a trigger pointed at their heart.  No knowledgeable person would disagree with that. Period.

And, oh good grief, the hospital chow was absolutely the worst tasting crud I have ever had to choke down.  I cannot think of a single day in two tours in Vietnam or any DXpedition I have ever been on where I ate more disgusting chow.  And I am including the days I ate MRE's out of a bag!  No surprise, I lost five valuable pounds during this unpleasant hospital stay.

Yes, indeed, I am glad to out of that place.  Because of my uneasiness and the constant laughing and chatter coming from the Nurses Station just outside my door, I rarely slept for more than 1 1/2 to 2 hours.  Last night I slept for 12 hours straight once getting home to a place that felt safe without my life in danger and that provided quiet surroundings. 

So, here is where we are:
  • Six days of IV fed antibiotics here at home
  • A new infection watch is on to make sure the treatment for the first infection has not created a new problem in my digestive system (does it ever end?)
  • Several days of extra special care of the feed tube entry point into my abdomen
  • Chemo Cycle Two canceled this week and moved to next Thursday to let me build back up some reserves I'll need to get through that session
  • Tomorrow I start weekly one hour meetings with a special social worker like professional at my Cancer center so that somebody is watching to see if my mental health is where it needs to be to make it down this long journey. I'd be lying if I did not admit that yesterday was the first day I actually questioned that...
  • Thirteen doctors have been involved in my treatment so far...is there a Guinness Book of Records target I should go for?!

November 1, 2010

Full head of hair still

I do not know who has how much money bet on which day my hair will fall out.  But, if you hold a ticket for today (Sunday) or any day previous to today, you underestimated the tenacity of my hair follicles!   I am well into the period when the hair dump was supposed to occur but it’s a total non-show so far.  Hold your ticket!  Chemo Cycle Two, a more powerful version of Cycle One, starts this coming Thursday.  If the chemo does not get the hair, maybe I’ll pull it out myself during this round of fun!

Sunday – big improvement!

Sunday reveals more improvement. The docs are visibly happy about the results of the treatment.  One reports that the Lab has just reported that they have nailed down the specific bacteria causing all this trouble for me.  We are able to eliminate one of the antibiotic drips.  There is talk that I might get out of here tomorrow even though I will have to continue the IV drip at home.  That is fine with me.  I am way past hospital-phobia and need to get the heck out of here.  My cranky level is climbing and I am sure I have moved over into the nurses’ SOB category.

Saturday – more of Friday

Saturday is a continuation of Friday.  I do notice that the swelling and redness around the G tube seems better.  Visits from my two attending doctors confirm the improvement and we all feel better about the situation.  At least we are on the right track…even if we do not yet know what nasty bugs are behind all this.

Infection still winning

Friday evening, late night and early Saturday morning hours crawled at a snail’s pace.  There is a seemingly non-stop flow of hospital med people coming in checking for any signs of improvement in my pain level while checking the flow of my vital antibiotic IV drip. They have been constantly lifting my no-modesty “gown” to monitor the bullet hole ugly appearance of the G tube’s much infected entry point through my abdomen to my stomach.  It is impossible for the doctors to know exactly what bacteria is attacking me because it can take up to 48 hours for the Lab to grow a culture from a sample of the inflection discharge.  Because of that, they are feeding me two very strong antibiotics to cover all the bases.  To keep these meds flowing, I am getting a constant drip of saline solution with Potassium Chloride that serves to keep me hydrated at the same time.  
I am so exhausted from all the hours of sleep lost over the past two weeks because of this pain.  Things are not much different here except that the hospital bed with all of its adjustments allows me to fine tune my position to one that brings the least amount of pain.  With that comfort comes waves of sleep and no sleep that makes the hours roll past in a blur of non-memorable rounds of questioning from hospital staff, trying to eat, dragging my IV pole of meds into the bathroom, etc.

October 30, 2010

Back in the Hopital again...

I started Friday by visiting the Cancer Center mental health folks.  When my current chemo-only program is over in December, I will start a new treatment composed of chemo and radiation.  That treatment will occur each work day of the week for 7 weeks.  The treatment is going take me some places I am pretty sure I cannot go without a special plan to deal with some deep rooted challenges. 
Next, sister in law drove me over to see Doc D.  It was step-up-to-the-plate time for the Doc to dig me out of this deep pain fissure he dumped me into.  The Doc and his staff checked me out noting that my skin was very red, hot to the touch – sever infection.  Because I have a major chemo treatment day coming in less than a week, the Doc D quickly made a decision to hit me hard with antibiotics.  Antibiotics taken orally are slow acting compared to those taken directly into the body by IV. 
We talked about the urgency of the matter and the options available.  It was a no-brainer.  Doc D had his nurse contact the hospital and then shot me out the door to go immediately check-in. 
No sleep again tonight.  I hope that will change over the next 2-3 days; the number of days I will be here.  I am hoping that my time here at the hospital will let Lieska, my sis in law and Mom all decompress some, too before we start this all over again next Thursday. 
Beside, there are a whole new set of nurses here who do not seem to have heard about my previous two stays here in the last few weeks.  Therefore, this target rich environment will present me with plenty of opportunities to create havoc!!

October 28, 2010

Chemo Cycle Two going to be tougher than One

Here Comes the QRO Chemo Dosages

Doctor Q and I talked today about what will be the plan for Chemo Cycle Two. Because my blood work tells her my body did a reasonable job tolerating the chemo dosages giving in Chemo One, we are going to turn up the chemo dosage to the top limits.  She will closely monitor me to see if I can, in fact, deal wiht the new limits.  I have been told not to worry too much about it; instead just keep Doc Q's office staff informed of changes so they can bail me out of trouble if things go bad.  

I am going to therefore, move forward with installing attractive seat beats here in the house that has been reserved exclusively for me....blush.  I also ask the caregiver tream to pick up some upscale color coordinated knee pads and a comfortly padded ring to go around the top of the bowl..  Later today when nobody is home, I will begin screaming "Buick" at the top of my lungs over and over and over.  By the time the new heighteded chemo levels are beng feed into me next week, I will have perfected the Buick call as well as the univerall accepted dry heaves plea for mercy, "Oh God, save me!  Make me stop!"

Disabled Parking Pass. 

Today the doctor's office completed a DMV document that will get me one of those close-in parking spots.  I joke around about it now but down inside I know that they know that I am going to need that pass in not too many weeks.