It's happy hour somewhere!

My and my AfroDizziac robe.

Hospital Time

As I expected they might, Abbott ER did their own CT scan (they didnt have the recent MRI and oncology scans in their systems). What surprised menis that the didnt find anything else going on, such as diverticulitis, intestinal blockage or anything else that might be causing the pain. Dr Grampa's guess that the pain was linked to tumor pressure (and that only shrinkage via chemo mightt be my only hope to stop the pain on it's own) seems to be right on.

Abbott bumped me upstairs to the hospital last night with the plan of nailing down a pain regimen that works, under close supervision. Major changes so far include loads of IV antinausea and pain meds, and replacing my 12mcg Fentanyl patch with a 50mg patch. The pain comes
And goes. I was feeling no pain at all last evening, but right now it is wheedling it's way back, waiting for a recent dose to kick in.

So far I am very pleased with the oncology/cancer floor at Abbott. I may be here it a day or two until the get the pain under control and have a plan that works.

My mood is not perfect, but at least I can think about something other than the pain.

My dog is safely with friends, also, though I am told she might be allowed to visit!

My Friday night? ER.

The back pain was too much, I realized that the ER was the only place that could help. Hopefully they'll do more than just give me different drugs to cover up the pain. If it's fixable, I want it fixed -- 'cause it's getting harder to function. Mom and Jen are here with am at the Abboott ER.

Something new

So finally the barfing begins. First time in over 30 years, and it never happened during chemo last time of course. It tasted like pills and vitamins. I'm working on eating a banana now, slowly. Since I'd jut taken annoy about 2 minutes before, I have a feeling I'll need to retake that one.

Back pain up to about a 9. I think I need to get a base level of the oxy in my system. I felt totally pain free for a couple of hours yesterday, I may have falsely attributed that to the Fentanyl, but I think it was the combo that was the key.

Chemo +1, Drugs, More Ranting

It's strange to be back here again -- in chemo land, and my reintroduction to the infusion center yesterday was emotional and hard.

Yet again, I get snubbed by the Breast Cancer Army. In the middle of my treatment I see a woman come in to the infusion center with her head (clearly shaved) covered with a hanky (I'm sure there's a better term for this but this is all I can come up with at the moment). She has three proud female trends with her. I'm in an otherwise abandoned row with my mom and brother. They take one look at me, notice my lack of breast-cancer-ness and lack of female-ness, and move on to another, much more crowded, row. I'm not exactly sure why this is, but all of the breast cancer survivors I've met in the infusion center (and, to be fair, more so their friends who accompany them to treatments) are very snobbish an appear (for some reason) actively anti-male. I realize that breast cancer is a female phenomenon, but the most important part of this is *cancer*, which does not discriminate based on gender. I have said this before, but I feel the burden of having an odd and obscure cancer that is not one of the "popular" cancers and does not have bumperstickers, ribbons, walks, keychains, coffee mugs, etc. Maybe I am just overly sensitive, but it only serves to make me feel more alone.

My back pain has been my major compliant and has been getting worse of late. The only time I've found total relief from it is to quadruple my prescribed dose of oxycodone. Whichbmeans im taking 10mg Oxycodone and 650mg acetominophen every 2 hours. I have only done this 3 times, as an experiment to seen if it would make it go away. This makes me worried about eventual addiction, as you can imagine. Dr. Grampa, the oncologist, ramped up the painkiller to a Fentanyl patch (12 mcg/h). This is like a nicotine patch (I assume) and is a small clear patch that goes on the skin and dispenses a controlled dose over 72 hours. I put it on yesterday afternoon and its working now. I take this with my oxycodone, but at least now I don't need to exceed my prescribed amount. I'm still flooding my body with opioids, of course. Another down side of this is that I cannot safely/legally drive until I am off of these, which may be a few weeks. Dr. Grampa believes that it may be the tumor causing the pain, and if that is the case the only hope of fixing the problem (as opposed to simply covering it up) is through chemo, which will (or should, anyhow) shrink the tumor.
Right now I'm just overjoyed that my back is only slightly sore--as opposed to a constant, all-consuming knife-blade in my lower back) so the chemo side-effects (low level nausea, lack of appetite, tiredness and deadened taste buds) are minor.

The opioids make me clumsy and liable to drop things, but I'm not a juggler so that's not much of a loss at the moment.

My spirits are returning with the decrease in pain. Let's hope that the lack of pain and good spirits are a trend and not just an anomaly.

Chemo

I had an appointment this morning with my oncologist. It was very like a bad dream when they said they had me scheduled for chemo afterward. I'd been planning to start next Monday, but their plan was different from mine. This was not at all what I was planning on doing with my day. I agree that it is good to start as soon as possible (and I've been trying to hurry this process up for a month or more) but this came as a shock. It all begins now. The first of the drugs is already running. No, I am not excited. This is not like the first day of school, where there is excitement mixed with the trepidation. It's a sign of how serious this is that I'm back in this place. Pain, discomfort, tiredness and nausea are my new normal until further notice.

Appointments, Insurance (again) etc.

I continue with my chemo-prep planning.

Next monday I have an appointment with a new chiropractor (that takes Medica). The great thing about my (hideously expensive) self-insurance plan, Minnesota Comprehensive Health Association -- with Media as my chosen provider -- is that eventually everything becomes free. I pay about $280 a month, and after I have hit my $3,000 out-of-pocket annual maximum, everything is 100% covered. Prescriptions, doctor visits, surgery, chiropractors... they all cost $0.00. This means that I end up paying a little over $6,000 a year, in the end, but last year my total bill would have been about $150,000 -- so its still a big savings.

Some have asked, so I will clarify: this is not Minnesotacare (which is our Minnesota low-income insurance plan that we've had in place for years. So there, rest-of-the-country-that doesn't-think-everyone-should-have-health-insurance.

Minnesota Comprehensive Health Association (MCHA) is not low-income insurance, it is high-risk insurance. They only way to get on MCHA is if you have a pre-existing condition that makes you ineligible for other health insurance. Cancer qualifies, FYI. I was on MinnesotaCare (that's the low-income one) but then my financial situation changed and I had also outgrown MinnesotaCare, which only covers $10,000 of surgical benefits. Those who believe that the poor should not have health insurance will still be happy to note that at least the poor are not getting very much coverage under MinnesotaCare. Also, I dropped MinnesotaCare because I wanted to go to Mayo, and last year my MinesotaCare provider (HealthPartners) didn't cover Mayo. This year, 2011, they do. It all changes year-to-year.

So, I'm on MCHA. Its pricey, but it is literally my only option. Well, I could get a job in Corporate America or move to Canada. But corporate America wouldn't like the fact that I'd need to take 2 months or more off every year for my cancer-related junk, and Canada just isn't very interesting. So, until the US nationalizes health insurance -- or I turn 62 and qualify for Medicare -- yours truly will pay $6,000 a year for health coverage. Its still a net savings over what it would cost, but its a screwey situation.

I also have an acupuncturist appointment scheduled next Tuesday. Acupuncture -- which is perhaps the most helpful single thing that I found during my chemo last time --  is not covered by Medica. So I'll spend about $50 a week for the next 2 to 4 months getting those treatments. Its worth it for me.

I also have an appointment with Dr. Gesme, my once and future Oncologist, to talk about everything and actually, hopefully, finally, perhaps get a chemo plan scheduled. I'm shooting for Monday the 29th to begin chemo.

Many have volunteered to join me for Chemo, but its an oddly personal and vulnerable time, as the patient (me) doesn't feel very presentable, isn't usually in a good mood, has tubes running out of them, is sometimes in pain and uncomfortable and has a tendency to fall asleep. Some have come along before and looked extremely uncomfortable (there are some very sick people in the infusion center, my cancer brothers and sisters that are at varying stages of their treatments). Its also most of a full day commitment, as treatments are about 5 to 6 hours. I appreciate the offers greatly -- truly -- but I'll likely just call on family.

Again, I wait -- the sooner I begin the sooner it will be done.

Years

The port is in (as previously noted) and I am now left with two bandages on my upper right chest. The smaller one is apparently from an incision that helped to guide the catheter into my vein, the bigger one is from the actual installation site. I have no pain from it unless I bump it, but since there is no constant pain to remind me of its existence, it makes for an ouchey night, as I turn over.

Ever had oxygen and felt like you could smell the tubing smell afterward for a bit? I have that now. I was on O2 yesterday for a bit during the procedure -- but I attribute it to the fact that there is a rubber/latex/silicon/something tube in my vein, and when I exhale, I can taste it. Kinda strange.

I got a call from Dr. Hunter, the Mayo Urologist that I've been working with for a year or more. This was just a followup call to answer any question that I had, and I asked him some hard questions. He is one of the world's leading experts on urothelial carcinoma, so I figured that he would have some ideas.

He was reluctant to give life-expectancy estimates. Everyone is. Partially with good reason, as people could fixate on this number. He did say that I have some good things in my favor: usually this disease affects only people much older than me, so my (relatively young) age is a plus. Also, I have good renal/kidney function, which is another plus. I also responded well to chemo before, which is another plus. 

One negative is that I had chemo and it *didn't* make it go away forever. It chased it away for about 9 months. That tells them that the chemo should make it go away for awhile, but it is unlikely that it will make it go away forever. Dr. Hunter stated that -- at some point -- the disease will progress. He is reluctant to give life expectancy estimates, but the best he was willing to say is that my lifespan will now likely be measured in years, not decades.

I know that none of us have any guarantee of a long life. People say, "well, you could get hit by a bus tomorrow!" True enough. But if learned individuals told you that it is very likely that you will get hit by a bus tomorrow, and that you fall into a category of people that tend to get hit by buses frequently, would it change your outlook?

I know, there is no sense harping on it and focusing on the negative. Dr, Andrew Weil once said something that stuck with me: all healing is self-healing. If a patient decides they're going to get better, they will do better than a patient who decides that there is no hope and that they're not going to get better.

My problem a the moment is that I'm not sure that *I* believe that there is a hope. I've been told some very scary news. I need to get my head into a better place and start to believe (rather than just say) that I have a chance. This is perhaps my biggest hurdle at the moment. I'm working on it, but it may take a while to get to that place.

Procedure Done

I'm all done with the surgery at Abbott and my mom and I are waiting in recovery.

The porta cath procedure is uncomfortable but livable. I'm used to (and spoiled by) Mayo and I kept focusing on Abbott's stained ceilings, weathered nurses, very young doctors and the disorganized feel of everything.

The picture is the "Power Port" porta-cath device, or one identical to it, anyhow. It's about the size of a thumb. The long white tube was threaded into an artery in my neck, and the big purple thing is under the skin near my right collarbone.

Once the incision heals, it will be completely invisible beneath the skin. The domed area is where the needles and IVs go, and the 3 bumps can be felt through the skin to orient the needle. Infection is the biggest risk now, and I'll need to watch it closely for the next week or so.

Port O' Cath

This morning I'm off to Abbott Northwestern to have a Porta Cath installed. I think "implanted" is the approved nomenclature, though "installed" seems more appropriate.

This is a metal and plastic device that will go underneath my skin in the my upper chest area. It will allow the nurses to have easier access to my bloodstream when taking blood and giving me chemo.

I didin't have this done during my last chemo (it wasn't discussed until about halfway through).

This was part of the chemo that I dreaded the most: the (sometimes lengthy period) spent fishing for a good vein. The longer chemo goes, the harder it is to find a vein. Other than the needle sticks before and during treatment, the actual chemo process is just a boring 5-hour wait in a chair. It more like having your hair colored than anything else. Except you don't get your hair colored. Oh, and it costs like $6,000 each time. Now, when I go in for chemo, there will still be a slight needle sting when they take blood, and another when they start the chemo IV, but they'll be right in, every time.

Once the porta cath incision heals, it won't be visible above the skin, and it will be (hopefully) eventually removed once all this is (hopefully) over with. I'll be only lightly sedated, and the procedure is just an hour or so, though I am still nervous when anyone is messing around with my bloodstream near my heart.

I know that Abbott Northwestern is commonly regarded as a pretty good hospital locally, but my confidence is shaken at the moment. Mayo clinic -- one of the best medical institutions in the world -- messed up big time with me twice recently. They should have scanned me more often, and they should have been using PET-CT scans, not MRI and chest X-rays.

Anyhow, wish me luck and more soon, tomorrow at the latest.