Wednesday, October 24, 2007

why it's important to remain humble

You all know how pleased I was with the good news about the dramatic drop in my CEA count. I was also very happy to be in that final "boost" week where the radiation treatment field was finally reduced to just either side of me instead of from my back as well. I was thankful for these things and looking forward to the time in between the therapy and surgery.

Monday afternoon Jody and I met with Dr. Grasso as planned for when the chemo/rad was finished. I'd been doing some research and had some specific questions about his approach and what to expect afterwards. I wanted to know instead of wonder so I asked.

I will not lie; some of the probabilities are unpleasant if not absolutely shocking. I have been pretty upset since then but I am holding onto my faith. It has not failed me yet.

I'm going to lose the better portion of my rectum and an astonishingly large section of my lower colon. Dr. Grasso's plan is to resect back far enough to take out the blood vessels and lymph nodes surrounding/supplying the area including the tumor. It is aggressive, but I believe there will be little to no chance of ever having a problem again. Again, I will not lie. This scares me a lot. I'm looking at what seems to be a quarter of my lower bowel using the illustration Dr. Grasso used to describe this too me.

The resection is going to be limited by the size and shape of my pelvis. Beyond just attaching the healthy sections together in a straight line, he has two techniques that will make up for the lost capacity of the rectum. The one he wants to try is called a J pouch where the rectum is turned back on itself to form a J-shaped area to hold more waste. The bottom of the J becomes the new opening to the rectum and this is a proven method used by lots of surgeons with success. Another is to cut the lowest portion of the new section and stitch it back together sideways making another larger space. The downside to both of these methods will be more urgency and more frequency in trips to the bathroom. There is no getting around that it seems.

Recovery is going to be kinda ugly as I will be wearing an ileostomy bag for most of December. I am hoping the resection will heal in time to lose the bag before Christmas. To my perfect shock, my diet -still- will not matter and I can eat anything I choose. Go figure.

The worst is the risk to my reproductive system. I do not want to be gross nor do I know the biomechanics of the nervous system, but there is a probability that I will not be able to have kids the "normal" way. I may have to go through minor surgery to collect and/or bank my semen because this colon resection may leave my plumbing turned backwards. He is confident I will not lose any ability to have sex with Jody but my ejaculate may wind up in my bladder instead of outside where the little swimmers can try to make a little John or Jody.

Above all else this was the most heartbreaking for me. Jody endured a miscarriage two years ago. For the few days before it happened we were both profoundly moved that we would be parents. This was one thing we both wanted but had given up to God to decide when we were ready. Suddenly, we were ready. Even though we didn't feel prepared, that decision had been made and God thought we were ready. But we weren't and that time was really only to enlighten us both that having a baby was something we both really want. And that we need to be patient for the time to come instead of try to force it upon ourselves at the expense of our relationship or our friends and family. We knew then we would probably need help getting pregnant. Though it has crushed my spirit for a few days now, the reality is we will probably still need help. Just now it will be both of us needing help. Adopting an unwanted child is also still out there and may turn out to be what we are supposed to do nonetheless.

So yeah, my radiation is done and the last of the chemo pills are gone. I'm still hurting but I can now look forward to healing up and getting some strength back. One thing is most clear as well; I've no room to be proud for "surviving" this or any other ability except to lay it all out there and pray for help. This is my test and I know I will pass.

Friday, October 19, 2007

Three point seven, baby!!!

I had to post again...

I was on the phone with my mom checking on me when I got another call. Mom excused herself and wished me a good day.

On the other line was Dr. Lee, my oncologist. I wished her a good morning and mentioned that I was intending to call her later today to see if the results from my most recent bloodwork had come back. They had and the results were very, very good.

I am not anemic and my kidney and liver functions are normal. Those weren't the factors I was interested in though so I asked about the CEA (CarcinoEmbryonic Antigen) counts. On my mind was the last number I'd heard which was 19; a borderline indication that metastatic disease was on the move... cancer spreading, in layman's terms. Seriously sick people have CEA counts above 100 while normal, healthy people count only 1 or 2.

Well, as of this past Tuesday my CEA count is down to 3.7.



cast your vote

Yeah, it's 4am and I'm posting, but I've been kept awake this night and I just need something to get my mind out of the bathroom. Yonder computer will entertain me with more BMW tidbits and I will surf to some electric vehicle sites starting with this one and dream about an electric car that actually performs like a car. It would be awesome to carve corners at Summit Point making no noises but tires squealing...

On to the subject...

Now that all this hubbub has died down to a dull roar there is some time to relax. I will have some regular blood checks to do between the end of whacking the tumor but before the surgery to remove it. Otherwise, I'll be home just getting my strength back until then. Since surgery will most definitely lay me up even longer, we've toyed with taking a vacation. Jody and I are fortunate enough to be able to afford to take a week off and get away and we are thankful for it.

Surgery will be the week after Thanksgiving and we anticipate having family and friends the week of Thanksgiving so we're looking to get away before then.

Two destinations keep popping up largely because they were two of the most relaxing places we'd ever been; Isla Mujeres in Mexico, and taking another cruise.

In reverse, a cruise would be great again because this time we'd go just for the ship. No attempts to adventure anywhere off the ship, just us and the lounge chairs and no effort to eat or drink. One possibility is cruising with a line not so popular with kids. One minor irritation was the level of noise on the cruise we took back in April so fewer kids would be nice. That's also a minus because we did just take a cruise for our anniversary back in April. But a big plus would be the comfort level on a ship which just about guarantees a relaxing trip.

Isla Mujeres was the island Jody and I visited on our last vacation as boyfriend and girlfriend; we came home engaged to be married. :D A return trip could be relatively stress free but not as effortlessly as a cruise. Jody would be put upon to do all of the speaking (No hablo mucho EspaƱol) and the trek to the island would definitely require all of my energy if we were to go today. I'd be wiped out by the time we got there unless I get a lot more strength back soon. We'll go back there in the future nonetheless so trying to go just for this time before surgery isn't a dealbreaker. It would be great though just sitting under a palapa all day. Just imagining it now is soothing away a little of the last few months. :sigh:

Feel free to post alternatives. I want to be warm and relaxed and preferably close to a pool or ocean without a care in the world but hopefully able to order a girly-drink without Jody's assistance as an interpreter.

Tuesday, October 16, 2007

:thmp thmp thmp: Is this thing on?

Good afternoon, all. I am still alive though I wish I could sleep off the rest of this. Birthday Friday was a doozie that I should have begged off of but I didn't want to disappoint my family.

We went to one of my favorite Mexican places; El Azteca. It took some time to get inside which is always a sign of good cooking, but I had to bail to get a donut and a coffee because I was getting shaky. Back home I was so tired but there were gifts to open and I figured I could rest late on Saturday.

Bill got me a cool pocket 8/16-bit game with little cartridges filled with old arcade games. Biggest surprise there was a DigDug II that I never knew existed. Most fun so far has been Donkey Kong Jr. Joanie and Josh got me Oblivion for the Xbox, but I'm going to demo it first because I think it is an RPG. Mom and Dad got me shop manuals for my BMW from Haynes and Chilton which I hope will get put to good use soon (please let the chemo and radiation wear off fast!). Jody overloaded me with movies, a quiz book, an XBox cheat book (tsk tsk), and an extra Xbox controller. (I had to download Bomberman from Live so we can play each other now.) The last gift was a quilt Jody had made with friends after sending patches all over the place to have friends and family personalize to help me get better. I was really touched and I will definitely take it with me to the hospital but I was so tired when I opened it that I couldn't really express my thanks. I was really really out of it.

Truth be told I was exhausted before we went out Saturday evening and I haven't really recovered since. I pushed it going out with Joanie on Saturday to pick apples and though I was feeling good out in the sun, I paid for both days the rest of the weekend and through today. I'm burned up and short-tempered and I know I've lost it over the smallest and stupidest things. For that I am sorry and blaming the drugs or the radiation is only an excuse. I just feel like crap all over and, even when asked, there isn't anything I can think of that will make me feel better for very long at all. I just want to be finished already. That or unconscious for the rest of the year until the surgery is done. Someone's old joke about being sick and tired of being sick and tired comes to mind but I can't remember whose it was or if I'm even remembering it right.

Friday, October 12, 2007

happyish birthday

Yes, today is my birthday. I looked back over the blog and saw that I was hoping today would be the last of the chemo and radiation therapy. Well, it will be a week from today and all in all I am not a complete wreck as I thought I might be.

This had been a rough week until once again I took charge (with a great deal of help from Mom) and went out of my way to get the liquid Oxycodone Dr. Cheston had prescribed/suggested/hoped/gambled would help me with the intense pain trips to the throne had become. She instructed me to take the stuff about half an hour before getting out of bed for my morning edicts to the kindgom or half an hour before I felt I'd be so royally seated. Though it had taken some rational yet insistent argument with the local Kaiser pharmacist, a hundred miles round trip later through the worst DC's traffic system could muster, I had my little bottle of the next thing to try and was praying it would work.

Lo and behold it did. It's no business as usual by any stretch, but the edge is very dull now and I am not leaving in tears or shaking so hard that I need sleep. Because the stuff takes effect so quickly and is essentially a substitute for one of the Oxycodone pills, I have backed the pills down by one and will ween myself off of them with purpose when therapy does come to an end. They are addictive and though I do not feel myself wanting for them, I do want to make sure I don't.

This all happened just in time for Joanie's visit from Idaho. She arrived Wednesday night very late and has been filling in for Mom since yesterday afternoon once she got over a little jet lag. The morning liquid Oxy does me so well I do not need to immediately rush home after radiation to get some breakfast... though that is still a better start to my day than not getting any! ;)

Today Joanie took me in for the final full-strength radiation exposure. I learned earlier this week that the final week would be tapered off nice and easy. I felt bad having broken down in the doctors office when I just couldn't get them to adjust the field, but the news about the last week going to be lessened did help steel me for these last four days. They're done now.

Joanie and I celebrated with a little shopping and a realization that brick and mortar stores can sometimes just plain suck. I've wanted some new hiking shoes and I prefer to try them on to see that they look nice on my feet and fit well. Price is a not a major factor, but I don't even try on shoes that cost too much. There is no practical reason my mind accepts for such wildly different prices for shoes. When I thought I'd found a pair today for a reasonable price (what I now consider "reasonable" is also rather nutty) I got an immediate runaround from some English as a second language clerk who ran off with the shoes to get another box that said they shoes were nearly twice what the first box said. Funk that.

Joanie had been homesick for Chik-fil-A but another ESL below average student couldn't be bothered long enough to finish taking our order before hooting and hollering behind us for numba seex and numba toooo. Maybe it's the chemo or maybe it's hanging around all the baby boomers but man have I developed a sincerely bad case of please speak English-itis. Service settings really do demand clear communications, ya know?

My birthday wishes? A tuchus that doesn't keep me warm at night, adjustable camber plates, swaybars, and R888's for the BMW, and a normal life again. Or maybe that 1:8 scale Lego Ferrari F1 car... to go with the 1:10 scale one I built last year. :D

Wednesday, October 10, 2007

just a little bit more to go

I feel bad that I haven't made a post in a week but I have really hit the skids. That last bit of fight I had was all that was left and, in the end, I didn't get what I wanted. Instead, I've got more drugs to handle the side effects and they are doing more and more to make me less of me than I want, despite trying to be conservative and scientific in how I watch myself taking them.

It seems the only thing I have left with enough oomph to squeeze out any more adrenaline is anger. When I get mad, I can do anything. I crash hard for it, but I get it done. This week it will be getting a prescription filled that poor Jody got chased from one pharmacy to another and could not get filled. I'm going back to the Kaiser pharmacist and if I get one breath of how they don't want to order it because it's liquid and they'll get stuck with it, I will go mental on them. Mental as in are you using your brains back there? What do I care if you have to order it? Order it. What do I care if you get stuck with the bottle after giving me what I've been prescribed? Are my premiums NOT already covering these costs? Your paycheck? The lovely building we're in? The overhead expenses of drugs going bad on your shelves? Isn't there a board of directors and shareholders making a profit off my premiums?

Order the damned stuff.

I wouldn't be so angry except for the fact that I'm in pretty much constant pain and have not yet been able to get out of it. I have seven more days of radiation left and then I can start feeling hopeful. I've been in tears every day for a week now for one thing or another though mostly it's just that one thing. Last week I couldn't understand why people would do illegal drugs; the kind of stuff that scrambles your brain into seeing things but this week I'll take it... or at least something to knock me out until the radiation effects calm down.

I am trying hard to hold on. I am so fried I just want it to stop.

Wednesday, October 3, 2007


Today was the day I'd had enough. I've been biting my tongue and laughing off a lot lately so today I fought back.

Yesterday was Doctor Day for the week and I repeated my request to see if the radiation field cannot be reduced. Dr. Linder said it was possible but not recommended for the same reasons Dr. Cheston had said it wasn't possible and not recommended. At this point in my treatment, the side effects are having a greatly increasing negative impact on my quality of life. Dr. Linder said it could be a week before I'd notice any change but also said the effects would last a few weeks after treatment was finished. I was told at the beginning that I'd be monitored and my treatment would be adjusted so today I'm cashing that chip in. I've requested that both doctors consult with one another and consider altering my exposure field so that I can start feeling better in a week instead of in four weeks. The tumor is most definitely shrinking and I feel it is not out of bounds to ask them to refocus the energy to keep hitting it and as little else as they can.

Today I was supposed to get a biopsy taken of whatever the little shadow was in my right lung on the PET scan. Emphasis on was.

Weeks ago the liver biopsy had come back negative and Dr. Lee wanted me to get my lung checked. I was told this one would be more conclusive because the surgeon would use a scope to actually look at what he/she was going to sample. The liver biopsy had been guided by an active CT scan but the surgeon then had admitted in his report that he had seen no lesions on my liver during the scan and had effectively been sampling me blind. When it came to light today that he (same surgeon) would be doing -another- CT-guided scan to sample my lung, I panicked.

I protested immediately and said I thought I was going to be anesthetized and that the biopsy would actually be taken only from a lesion that could be seen with the surgeon's eyes. "No, that;s not us. We don't do that here." Well then, I'm not doing this here either.

For starters, I was already against having this second biopsy done. It was based upon a very faint little blue blob in my right lung nowhere near as brightly shown as what my liver had been. Regardless of the results of the biopsy, my therapy would not change. I am already taking chemo as if I have stage 4 cancer so that any mets disease would be poisoned and killed before it can get going. A negative result would not reduce my chemo nor shorten my radiation and chemo regimen. A positive result won't increase them either. I will have to be PET scanned after surgery in any event. This is not to mention the hassle of fasting for another day while already weak and having to suck down chemo to make me even weaker without any food for fuel to just stay awake or walk into the hospital. This biposy was a waste of my time, a waste of my insurance benefits, a waste of the surgeon's time, and too late in my regimen to make a difference.

I apologized to the surgeon, but I told him I had no confidence he would find anything. If the cought that started this whole mess had been caused by mets in my right lung, guess what? It's gone now. I was not interested in laying awake through another blindfolded pin the tail on the Sco procedure.

Meanwhile, I now know I will be checking in to GBMC for surgery on Thursday, November 29th. That most likely keeps me in the hospital though the weekend and probably the better half of the first week of December. I also believe the surgery with be laproscopic and not terribly invasive. I will make absolutely sure of this with Dr. Grasso beforehand so that I am not surprised again like I was today.