Jan 31 - Hydration Week

So this week has been frustrating! Monday - Radiation facility having difficulties so I went over to chemo with a chance to come back later for radiation. At Chemo, it was discovered that my kidneys had not been functioning fully and we would not be doing chemo this week but I would be having hydration Mon - Weds. The key "marker" is Creatinine. Prior to starting on Jan 7, the level was 0.9 against a "Normal Range" of 0.76 to 1.27. On Monday of this week, this number was 2.23. After hydration, I returned to the radiation facility around 11:30am and received treatment around noon. (Someone skipped lunch to fit me in!) Tuesday - Radiation facility down again. Over to Chemo to for hydration. At 10:30, I went back to radiation facility as they said the technician had arrived, replaced the part and only needed to reboot and run diagnostics. At around 11:15 they came out and told me the machine failed the diagnostics and we'd reschedule. At this point, my frustration overflowed a bit and I asked to reschedule all remaining radiation treatments from 7:30am to afternoon. They were able to slide me into a 12:30 pm slot -- so at least if the machine is "down" first thing, I won't waste my time. Wednesday - Radiation at 12:30 without a hitch. Chemo for blood work, hydration, and a scheduled visit with the doc. Good news, the Creatinine is down to 1.97 after only two days of extra hydration. Doc says we'll do chemo on Monday no matter what. If the Creatinine is within range (below the 1.27), we'll do Cisplatin at a 20% reduced dose (due to Kidney and Hearing side-effects). If the Creatinine is not below the level, we will proceed with Carboplatin which is not as kidney toxic...but would require weekly treatments for the remaining 3 weeks of radiation. I'm pretty sure I'd prefer only one more chemo treatment. We talked about how much fluids are required, as I'd been told 64 oz a day and I'm certain I'd been hitting that mark. The doc said that 100 oz a day is a better mark to shoot for, but that number includes all fluids -- the "Ensures" I've been "eating", the clear soups, smoothies, etc. Thursday (Today) - will head down for radiation / hydration in a short while. Have already consumed 28 oz of fluids today. 8 oz of Ensure for "breakfast" and 20 oz of ice water here at the office. We see the Radiation doc after today's treatment and will try to be civil as we voice our frustration over the extension of the treatment caused by the unreliability of the treatment facility. In my mind, every day this drags on is more pain and suffering and it delays the start of the real healing after this treatment is over.

Jan 28 - Chemo Postponed for a week

My kidney function wasn't where the doc wanted it to be so he decided to push back the 2nd round of chemo for a week. We're doing IV hydration for 3 days this week and we'll go back in on Monday next week and take a look at the labs again. I know I'm drinking at least 64 oz of water a day, in addition to pretty much "eating" only soups and liquid meals. By "normal" standards I should not be dehydrated but the chemo and radiation definitely screw up how the body works. I'll just have to double my efforts to increase my fluids....and stay close to a bathroom! Got my 14th Radiation treatment done this afternoon -- the machine was "down" again this morning. I'll be just past halfway through at the end of this week!

Week 3 underway

22 Jan - Back at it today after a day off due to MLK holiday.  No issues with the radiation -- took a picture of the mask today (on my iPod) -- will upload it once I get the pic onto my PC.   Still having hearing issues, have a meeting set on Friday morning with the hearing lab.  Want another test prior to Chemo "round 2", which is scheduled for Monday.   Also trying to get an appointment with the therapist whose role is to help me continue to swallow properly throughout this treatment.   I've not had difficulty with this yet, but am definitely starting to feel things differently in my throat.  It is not hard to imagine this can become a huge issue.   It is difficult to eat enough food now due to a combination of factors: 1. I always feel "full" because I drink so much to keep my mouth & throat wet, 2. My sense of taste is whacko, so very few things taste "right" and even less tastes "good", 3. I'm tired from interrupted sleep.   I get up about every 60 to 90 minutes to wet my mouth & throat.

On the good side, the treatment definitely seems to be working.  The tumor on the left side that seemed to bind several glands (probably the saliva gland along with at least one or more lymph nodes) is no longer a large hard mass.  It is both smaller and now is soft, like normal tissue again.   Not sure when we'll have any actual scans whose purpose is to measure the size the tumors to gauge the effectiveness / progress of the treatment.  I'll ask the docs that on Thursday when I see them again.

18 Jan - 9 Treatments down, 26 to go....

Week two is down.   On the plus side...the mask really doesn't bother me anymore.  On the down side, the side-effects are starting to pile-up -- especially the dry mouth and foods "losing taste"....

We get Monday off due to the MLK holiday, so three days off and then back at it on Tuesday morning!

15 Jan - Radiation #6

Yesterday's radiation was cancelled due to equipment issues.  We had a lot of rain and the site lost power over the weekend.   I'm first appointment of the day (0730am) and by 9 they still hadn't gotten all the equipment "rebooted" and properly networked -- so we just tacked one on at the end!

Meanwhile, we did do a new CT Scan -- as "ordered" last Thursday -- due to weight loss in the tumor area and a desire to continue to be a precise with targeting as possible.

Today, I had normal Radiation at 7:30 and will do so the rest of the week.

Aside from tiredness -- which I attribute to waking up so much during the night -- I felt great today.   I'm gettting up for 2 reasons.  First, my mouth is dry, so about every hour I wake up to get a few sips of water to moisten things.  Second, I'm hydrating so much that while I'm up, I might as well take a leak.  Pretty sure this is just how it's going to be for a few months.   Seem to have finally crested the hill on nausea.  This means that at least I'm eating enough now that I'm not being woken by hunger pains.

Continuing to "hydrate" as the "big risk" from the Cisplatin chemotherapy is potential kidney damage -- so taking no chances there.   However, another risk is hearing loss, and I'm definitely experiencing changes in my hearing -- it is becoming very sensitive....annoyingly sensitive.   Going to research that some more and do everything I can to save the hearing.

Along the way, lots of friends are helping out with tips, research articles, etc with ideas helping me ride this out the best way possible.  Thank you all!

I'm going to start building a list of things I'm going to do once this is over.   Right now, I'm just waiting for the day when I will next enjoy a Campioni's Sausage and Extra Cheese Pizza!   ....and a great Belgian ale....

Thurs, Jan 10 - Day 4

A couple of notable things:
1. Yesterday, at 1pm, when I sat for "hydration", my BP was 120/75.  My first nearly normal reading in weeks.  It was again 130ish over 90ish this morning immediately after radiation...and that "mask".
2. Today's radiation included a visit with my Radiation Oncologist.  Seems I've lost quite a bit of weight in my neck since the machine was programmed and we'll need to reprogram the machine so that the bulk of the treatment is hitting the target areas.   With my face thinning, right now they're hitting too much epidermis -- which is not desired.  Adjustments will be made in the next few days, I guess.
3.  The weight problem follows from nausea -- which I have really not been able to kick.  So,....Chemo leads to nausea leads to lack of appetite and inability to sleep.  Vicious cycle.  Today he told me to change the pattern of my nausea meds - which I've done.   Let's hope this breaks the cycle.  I have managed to eat 3 times today -- which is way more than the past 3 days.   Who knew eating would be hard this early on -- and not from pain associated with eating -- just overwhelming nausea.  It's like I took a boat into the ocean without dramamine and a huge storm blew up and has stayed for 4 days....it is that bad.

Radiation tomorrow morning then I get a weekend off -- hopefully to recuperate a bit and get back on top of this!

Jan 8 - 2nd Day of Treatment

7:30 am - Radiation.  This went better today.   First off, I was mentally prepared for the length of time I'd be in the mask -- that helped.  Then, I think the mask wasn't quite fitted correctly yesterday.  Today it seemed to have more breathing room.  Finally, I brought my iPod in and they have a little speaker unit to plug into.   I had set-up a few playlists but went with 3 consecutive live versions of LaVilla Strangiato.  Clocking in at around 8 min each, I'd hoped to be in and out before the 3rd one queued up...but it took about halfway into the 3rd or about 20 min total.  I can definitely feel a bit of stinging on my face/neck on the side that is being radiated.  As I understand it, the same level of inflammation is occurring throughout my tissue.  So, two down, 33 to go!

8:30am - Hydration.  After radiation, I went straight over to the Chemo clinic for "hydration".  They mandate two days of hydration following the chemo treatments I'm getting.  So, today, I strapped in for  a liter of saline + magnesium from 8:30 to 10:30.

After treatment, I went home for lunch and to change clothes and came into the office afterwards.

I'm dead tired, having failed to keep up with nausea meds yesterday and waking up at 3am with a real bad case of it.   Didn't realize it was nausea from the treatement and I had medicine for it, I kept lying in bed til 4:30 when I got up and took a Compazine and settled on a recliner in the TV room with my alarm watch to get me up.   Hopefully, I can manage to stay awake late enough this evening that I'll sleep through and be better rested tomorrow.   With Nausea comes loss of appetite.  Wasn't hungry yesterday and not so much today.  Gotta eat, though.  I can see where this will get really hard -- not hungry, lose your sense of taste, and it starts to get hard to swallow (hurt to swallow, even) -- yeah, I can definitely see how this will get hard over the next two months.  Longer, really, as the effects don't exactly ease up immediately after the last treatment.

Right now, my biggest worries have to do with the Radiation and the mask.  I literally can't move.  What if I have to sneeze.  Or what happens on the days that my nose is too stuffed to nose breathe?  You know how hard it is to get Sudafed these days.  This morning, with the nausea, I was legitimately worried that I'd have to throw up.  They assure me they can get me out of that mask in seconds...but I doubt it covers those situations.  Worse, if you stop the treatment, you probably have to either skip it, or start completely over.  Each day's treatment involves a bit of machine calibration, followed by some sort of rest period (I assume this is processing the calibration data into the "program" that aims the treatment) and the actual treatment time is 8min.  So, roughly 20 min in the mask.  Last I want to do is reset that clock!

Jan 7 - First Day of Treatment

7:30 Radiation --  This went well...the "mask" is difficult to adjust to...it holds my head completely immobile, including immobilizing my jaw.  It is really tight.  I assume it'll get easier -- meaning I'll panic less when it's on.

8:30 Chemo...   Well, this started with "hydration", 1 liter of saline/magnesium solution over two hours.  Near the end, I took (by mouth) some steroids and anti-nausea medicine and they added some anti-nausea into the drip along with a diuretic.   Well, I'd been peeing every half hour, the diuretic dropped it to every 15 minutes.  After the liter of saline, they added the bag of Cisplatin which was drained over the next hour.  Then, another liter of saline over another two hours.   I finished up at 2:30pm.

They said if I get "sick", it will be nausea and that'll most likely come later in the work.  There's a chance it won't be bad for the first round of treatment but it probably will be for the next two.  We'll see.

I let them leave the needle in the port so I don't get stuck again tomorrow and Wednesday.  I see the Chemo doc Wednesday during the hydration treatment.  I expect to see the Radiation doc on Thursday after the Radiation treatment.

So, it's radiation every week day at 7:30am.  I had chemo today and hydration tomorrow & Weds then it's just radiation until Jan 28 which is the next round of chemo.

Port Implant

4 Jan 2013 - Had the Port Implant yesterday.   The surgery was not a problem, but afterwards....having this tube in my upper chest / neck just feels weird.   I guess I'll get used to it -- at least "everyone" says you get used to it...  

Everything seems OK with the implant today.  There's some bruising in the neck area where they inserted the tube into a vein - and, of course, there are two incisions that are stitched up.   Oddly, the incisions don't really hurt / throb today.  As I said, my biggest issue is adjusting to the "tugging" I feel every time I raise my right arm or turn my head.

But...all the ducks are lined up to start Monday.  I have my first Radiation at 7:30 am and the chemo office opens at 8:30 and I'm scheduled to be taken immediately.   On Tues & Weds, I'll have radiation at 7:30 and then go (across the street, basically) to the chemo for "Hydration IV".  AFter that, it should be just radiation for the remainder of the first 3 weeks until the 2nd chemo treatment.

Confirmed Start - Declined "Research Study"

02 Jan 2013 -

Confirmed the following:
 - Port Implant -- tomorrow at 1pm, "Same Day Surgery".  Abby is taking me.
 - 1st Radiation - Monday, Jan 7 at 7:30am (first appointment of the day).  Joyce is taking me for this.
 - 1st (of 3 total) Chemo - Monday, Jan 7 at 8:30 (first appointment of the day).  Hope I can do this on my own.  We'll see how bad I feel after Monday.
 - Hydration IV - Tuesday & Wednesday at 8:30, right after Radiation. Again, hoping to do this on my own.

Last week, I declined to participate in a research study.  The planned / recommended course of Chemo for my type of cancer is 3 doses of Cisplatin (1st day, midway through, last day).  The study would've placed me 50-50 into either A) 2 doses of Cisplatin, 1st day & midway through -- skip the last dose), or B) Treatment with Erbitux.  After lots of thought, I decided to push through with more Chemo, not less, on the grounds that I'm young and otherwise healthy enough to handle the treatment in return for increased efficacy against these tumors.   Your first attack on the cancer is your best....follow-up treatments for recurrances are dodgy, so throw the kitchen sink at this one.