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:

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 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.