April 30, 2008
I've decided that will have no more bad days. Not that I've had any lately necessarily, but from now on they will range from good to great, period. A good day may mean I 'm not feeling quite as good as the day before, but it will still be a good day as long as I can wake up to it, stay upright and reasonably coherent into the late evening and go to sleep in my own bed that night. Now if this sounds a little to simplistic or sappy, too bad. It is all in the attitude one brings to the day. It follows the old saying, "Any day above ground is a good day." I'm not the first one to adopt this attitude, by any means, but I think it's important to either say it out loud or write it down to have it take on a life of its own and become who I am, to live it, as such.
On the medical news front; my still open 2007 surgical wound is acting up a bit and we're currently addressing that without going into detail. I began my new chemo last week, as previously reported and have had few or no side effects from same. I'm eating like a horse, sleeping like a baby, except when I wake up at 3:00 am like this morning, which I may pay for later today when I run out of gas; but that's ok. Nothing from my surgeon at UCSF yet - still at their conference. to return early next week. As far as I'm concerned I'd like to get the scar closed up and then treat the tumor with chemo, avoiding the long term side effects of another big surgery, but I'm keeping an open mind and will consider all options presented on a benefit vs. risk basis and go from there
All I know is that Anne and both agreed that yesterday was my best day yet because I got out in the garden to pick weeds and water; nothing like fresh air and sunshine to make it a great day.
April 25, 2008
I started a new course of chemo yesterday, Carboplatin, after a week of waiting after hearing that the doctors think there may be a new spot in the right frontal lobe and collaborating on how best to deal with it. My surgeon thought another biopsy would be best to identify what we are dealing with, which is the last thing I want at this point; nobody goes back into my head unless it's absolutely necessary, that really scares me for all of the possible temporary and possibly permanent physiological side effects.
A great nurse administered the treatment, Jen, who spent time at Dana Farber Cancer Institute working with brain tumor patients on treatments an trials. She was a wealth of knowledge and support as well as very compassionate, a great combination for a chemo nurse. The treatment itself was fast after the labs came back; I slept well and am feeling fine today, expecting that not to change and if it does we'll deal with it. The only frustrating part of the day was finding out that my UCSF surgeon, Dr. Berger, will be unable to look at my MRI films until 5-8, I don't know why not, but that's the way it is due to delays on the local side in getting information to him in a timely manner. Despite efforts to follow up with the various offices with the information, We can only advocate as strongly as we can and we then have to rely on their professionalism, which is lacking at times, but not usually, thankfully.
So it's onward and upwards from here. When and if it is determined that there is indeed an additional spot, we'll deal with it; what else can we do but stay positive and focused on healing?
April 18, 2008
Anybody who tells you their cancer is, "under control," is in denial, including me. Cancer does what it wants, when it wants, to who(m?)ever it wants. I think that we sometimes forget that cancer, by definition, is usually described as a group of cells reproducing out of control and unpredictably.
We were sitting in the Cardiac (EKG) waiting room ay Sansum Clinic on Wednesday when I felt a seizure coming on. It never developed to a full blown episode but would've been fairly large because it was coming from the right side; yes, I can tell which side, which tumor, the seizures originate from because they each have their own characteristics. The ones originating on the left side are more mellow, a pulsing dizziness that lasts about 45 seconds and leave, there is seldom involvement in the extremities and there are no lingering after-effects typically. The right-side- originating episodes are more physically violent and fully incapacitating with full physical involvement of the left side of my body with and some spill-over to the right side. It has left the left side of my face not necessarily numb, but I'm not able to smile; which leads me to believe either the infection is back or there is some swelling in my brain again that's causing pressure on my facial nerves. I had a pre-scheduled, well-timed, MRI Wednesday and have not had any definitive results from anyone yet. My Oncologist says he thinks there has been some tumor growth, and there is definitely swelling in the tumor area; it's evidently difficult to differentiate between the two. We're "waiting" for a second opinion from my surgeon and another from UCSF.
I say, "waiting," because we are going forward with plans for the HBO therapy as well as life in general, there's not much point in wringing my hands and worrying, it does no good and is actually detrimental to my health. I may not have my cancer "Under control," but I never want to let it have control over me. Life goes on.
April 15, 2008
Busy day yesterday. We saw rehab, had an adventure to Costco and met with the Wound Care Center to talk about the hyperbaric chamber (HBO) therapy for the still open (and I mean open) surgical wound from September of 2007.
Rehab was good. All we did was conduct the assessment, but I feel like we identified what we need to concentrate on, chiefly my left arm and fine motor skills in the left hand. I go in for my first actual session on Friday morning, so there will still be time for a nap in the afternoon - we must keep our priorities straight, right?
There is a downside to this as well, though, in that I will miss my visiting PT'S, Cathy and Candy. I really looked forward to their visits, the workouts, our conversations and their company in particular. Very professional and very compassionate, positive attitude from both. I will miss them, but I'm excited about ramping up my therapy at RISB.
Costco is always an adventure, so many tools and things, so little time. Got some great fish some computer stuff, etc. and I didn't get tired! I think taking Keppra out of the picture as a part of my seizure control regimen really makes a difference. It was making me really dopey (I heard that) and tired as well as making me irritable, as well; there are few things worse than a dopey, cranky headcase, ya know?
The HBO Clinic was very interesting and I think we're going to proceed down that path as long as we can get all docs to sign off on it. There is an increased seizure risk in the highly oxygenated environment of the chamber, so I'm waiting to hear back from my neurologist to make sure he feels the treatments would be safe for me and then we'll go ahead and schedule the sessions; there will be five sessions per week for a total of twenty, I think he said. I'll get to catch up on my movies as the tube is clear, I'll be rolled in on a gurney and there is a DVD Player. Each treatment will take about an hour and a half, that' three full episodes of Stooges.
I'm scheduled for my next MRI this week, so we should have a good picture, literally, of a lot of the issues by the end of the week along with a course to pursue. Many of you have asked about the chemo treatments; we should also have that answered, although my oncologist wants to continue with the Avastin and CPT-11 as it seems to be effective in growth control to date.
I've decided that cancer is a waiting or awaiting game; you're always waiting for test results, opinions from consults, the end of a treatment and for the beginning of the next and always, always, always awaiting the next sunrise.
April 10, 2008
That's about all I hear around my house these days; well, that or, "Hey, put a hat on, man, I'm trying to eat, ya know?" Although Anne says it differently, "Don't pick that, you idiot!" Where's the love?
So we go to see the plastic surgeon today ; and what's the first thing he does? Picks the damned thing! I mean goes to town on it, until it's totally clean; I looked at Anne and demanded, "How come you don't yell at him?"
"Oh, be quiet, you idiot." Wow, tough room.
Our surgeon, who knows us now and knows that we joke around just shook his head and laughed as he figured out what was going on. I explained to the doc that lately, all of Anne's sentences are ending in,"You idiot, and sometimes, "You, idiot!" the doc is single, although he does have a girlfriend/fiancee, whatever. Last time we were in his office before Hawaii, he asked us how long we'd been married, "19 years," I said, "15 of the best years of my life." to which he just smiled and shook his head as though he was thinking, "You poor bastard, you really are an idiot, aren't you?" I've learned the look, I get it a lot these days.
Anne said, "I've heard that line so many times it doesn't even phase me (wait for it) you idiot."
April 8, 2008
We saw the infectious disease doc today, Dr. Hosea, and gave him a box of chocolate covered macadamia nuts, we got a box for all of the doctors and their staff from the ABC Store right across from the hotel in Hawaii. He was very appreciative, as was his staff. They always seem surprised when we do this, like we are his only patients that do this stuff . . . maybe we are, who knows? Who cares?
He took a culture of the wound and told us that the wound care dep't. at the hospital has the referral for the hyperbaric chamber treatment, or at least the consultation, so we'll set that up ASAP - it can't hurt to try it and I'll do just about anything to keep from going through another surgery to close the wound on the top of my head. As my plastic surgeon said, "Tom, if I thought rubbing your head in a pile of manure would help to close up your wound, I'd do it." You're not the first person to want to try that, doc.
No answers yet on re-starting chemo or if that's the plan. Still lots of unanswered questions, some will only be answered by time, and they are usually the most disturbing, so better to not even ask, right?
April 5, 2008
Well, we're back! We had a great time, great flights, great rooms, etc. I love Hawaii, period.
I wouldn't want to live there again, but it's terrific to visit.
The flight over on Hawaiian Airlines was on time and very comfortable, as was the flight back.
I was very happy that we got rooms on the next higher floor than last Summer, so we had the same view, if not better - more pics of that to come. The girls had a great time at the beach every day; the water was great and air temps were right around 80 each day, then down to 65 each night, so very comfortable. Less shopping an very few day trips because we didn't rent a car for this trip, but the girls were satisfied to stay at the hotel beach and do their shopping on foot.
As hoped, we had a delicious dinner at my brother and sister-in-laws's house on Sunday evening and they bought dinner for Anne and me at a restaurant called Ocean in the Outrigger Reef hotel, great food, beautiful sunset from the lanai dining area - no pretense and very comfortable - highly recommended. It was great to see both of them and my nephew, too.
One of two regrets is no water play for me on this trip. I thought it best to not push my luck by wading into the surf this time, so I didn't go in at all - very tough pill to take, but better safe than sorry, I guess. We're going in to see the plastic surgeon to figure out how to close the surgical wound once and for all, I hope; that is what kept me out of the water, after all.
The other is I'm thinking it was probably too soon for me to go for a number of reasons, chief among those is the fact that the girls were very concerned about me whenever we went anywhere. I don't think they could relax like I wanted them to be able to. I think they had fun, so I know it was worth it for them. We're not going anywhere else until things resolve themselves medically for me and I am at least physically more able.
All in all it was a well earned trip that went off like clockwork. Aloha.