Anticlimactic conclusion

My blood tests today revealed that my neutrophils, part of white blood cells that are related to immune function, we're too low to safely do chemo. They were 800, well below the lower normal range of 1300 to 6600. I've been here before, but this is probably just confirmation that I need to stop chemo for awhile. Because of my immunosuppressed status, I'm a little like someone with AIDS (clarification: I do not have AIDS) in that getting sick right now could be extremely dangerous and could easily lead to hospitalization. My immune system is much, much weaker than yours right now. So if we have plans to get together and you're sick, or think you might be sick, or have been around sick people, or even just in close contact with young kids in general (who are of course germ factories) we should probably reschedule. At least for a few weeks. I'll wear a mask when in big crowds and continue to not touch public doorknobs, etc. I'll also continue to use the Purell.

I'm glad to be done a little early, but mixed on the subject. I do want the most benefit from my chemo, and I worry that it was cut a little shorter than planned.

Chemo, concluded.

Today I'll do the final treatment of the final round of chemo. It's been 6 rounds total (each 3 weeks long) which means that I've been doing this for 4 1/2 months. Which feels just long enough that I'm having a hard time remembering what "normal" feels like. My blood cell counts have been a little lower each time, which means that were reaching the point of maximal return for chemo: the damage (to my bone marrow, which will rebound given time) is starting to outweigh the benefit. I'm looking forward to gaining more strength and doing normal people things like working and returning to school.

The frustrating thing is the reality that I'll be back doing more chemo after an unspecified period of time, to be decided based on PET/CT and MRI scans. I'll have at least 2 months off, and likely best case is about 9 months. It is very bleak to realize that the chemo is going to be what's keeping me alive. It's becoming an oddly familiar part of me and of my life. I'm getting better at doing it and have the process nearly down to a science, but believe me the constant tiredness, and persistent-occasional nausea and dizziness get old quickly. But, like someone who is wheelchair bound or doesn't have sight in one eye, etc., it the way of things. I can cry about it or just do my best to accept it as the new normal. This would be a good time to quote the serenity prayer.

I have been through all of this before, of course. I aim to make the best of my good times and do my best to. It overly focus on the scary stuff.

People have asked recent about my prognosis, and I know that this is based in concern. But it seems to surprise nearly everyone that I don't have a clear life-expectancy estimate. I'm hollywood they like to quantify stuff like that, but my docs refuse to give an estimate. Partially because they don't want to get sued if they're wrong, but also because there are too many variables. Lastly, and most importantly, it's because it's not healthy to focus on time estimates. I know that many have a need to quantify things this way, but I'm surprised that I do not focus on these.

Anyhow, It's good to have this chapter closed and I look forward to the next.

Round 5 and the passing of a Champion

Today marked the Beginning of round 5. A combination of several things --including an extra week off, potassium supplements and Chinese medicine -- all worked together to bring my neutrophils back up from 700 to 1500, which is a normal range. Likewise, my red blood cells are only slightly low.
I'm feeling the usual: tired and slightly nauseated. It's manageable, and experience tells me that Wednesday (when the IV steroid wears off) will be a low day emotionally and physically. Blah, blah blah. Nothing new there.

Kaia

Perhaps the biggest news in the past few weeks is that Kaia, my 10 year old retired racing greyhound, finally succumbed to her apparent kidney failure. The vet and I did everything possible, plugging her full of pills and IV fluids for nearly 2 weeks in an attempt to restart her kidneys. When she stopped eating and drinking altogether, and the pain started in, I knew then -- as she had clearly known for a few days -- that it was time.

She was a huge part of my life at a time when I spend a lot of time at home, and she was a great source of happiness to me in general.

All of the dogs I've had are as different as snowflakes, and though it would be tempting to say so, it would be unfair to the other 6 greyhounds I've had over the years to say that Kaia was the best. They were all the best -- in different ways. Kaia was the best chemo/cancer companion animal that a person could wish for, and in that way she was the absolute best dog I could have had at this time in my life. She was always patient, kind, empathic and understanding. Maybe these are skills she learned from raising 16 puppies, I don't know.

To that end, I've started to track down info on her 16 pups. Some are still racing today, some have already retired or never raced (and been adopted into homes locally) and some may be due for retirement soon. I'm keeping my eye out. The apple doesn't fall far from the tree.

While I know this won't bring her back, I do know that Kaia had an amazing personality. I feel that chances are good that some portion of it lives on in her kids.

And some race results: she had hardly any ego for such a successful racer:

http://www.greyhound-data.com/d?l=465769

Chemo Flunkie and Kaia Update

Just a brief note today (I hope).

I was all set for part 2 of round 4 of chemo, but after the blood tests came back I was told that I wouldn't be having chemo today: my cell counts were too low. Specifically, my neutrophils (part of the white blood cell count) are about half of where they should be today. About 1500 is normal, mine are 700. 

Though this could seem alarming, its more of a "it was bound to happen eventually" kind of thing. We know that the chemo knocks you down, and low blood cell counts are an expected (though unfortunate) part of this.

What this means is that I'm more susceptible to disease than normal, and they gave me masks to wear when in large crowds (which I should avoid anyhow, these days). I should be extra good at hand-washing, avoid sick people, and -- by extension -- kids in general. This is common sense stuff on chemo, but I need to be really strict about it for the next week or so.

Other blood values were also off: my potassium was low, so they have put me (back) on potassium supplements. This can happen when a lot of fluid is being flushed through, which is what chemo and all the extra IV fluids do, plus I am supposed to drink about 80 ounces of water a day. When I lived at high altitude, it was common to have a potassium shortage since it was so dry.

Likewise, my hematocrit (HCT) is at 26, which is a far cry from my normal when I was at in Colorado, which was about 56. Red blood cells carry oxygen, and at high altitude we build more red blood cells to carry more oxygen. The low end of male human normal is 36, so I'm well below that. This could account for the lightheadedness I've been feeling of late.

Anyhow, the solution is to take potassium supplements, avoid sick people, rest up, drink water, and take the rest of the round of chemo off. I figured they'd push this treatment back a few days, but instead they've skipped it altogether and I'll start up again with round 5 in two weeks. The two weeks off will be nice, though the reason for the time off means that it may take the full two weeks until I feel better again.

This is the first week that I have not had acupuncture through my treatment. This could account for all of these values being off, as well as the persistent nausea that I've had all week. 

Kaia

Also top my my mind this past week is that my dog Kaia is very sick with kidney issues. She's been in and out of the vet, has had multiple tests, and is on a handful of pills. I'm alternately hopeful and pessimistic about her prognosis. The vet knows now that that there is kidney damage from an unknown source, though they seem to have ruled out infection and leptospirosis. Humans can catch leptospirosis from dogs, so that would have been scary for both of us had it been the case.

Right now she's not feeling well and its a challenge to get her to eat and drink. She's under very close observation and I feel like we're doing everything that can be done, but the sad reality is that nothing may be able to be done. I rely on her heavily for daily support and I would miss her terribly, but I am not so selfish that I'd keep her around past the point where it is humane simply for my own comfort of her company. I've gone through this before many times and it doesn't get easier, except that when it is time -- if it is time -- it will be clear to both of us.

(Picture below was taken just this afternoon and depicts her sleeping soundly... which she does a lot of these days. Poor girl.)

Results are in

The Pet/CT results are in. Its not exactly what I was hoping for, but its still classified as good news. I'd like a little more information, but in general this is considered to be positive news: the chemo is working and appears to be shrinking the affected areas. The report also mentions that there are "no new abnormalities". 

See the "conclusion" section at the bottom for the bottom line.

In a nutshell, the SUV numbers (Standardized Uptake Rate -- which for some reason does not spell SUV ) are lower. I was also hoping to know if the tumor and/or affected areas that we know about have decreased in size, but this analysis focuses on SUV values and does not discuss tumor and lymph node size. 

The is a CD of the actual scan images on its way down to Mayo where I'll have a followup second opinion/analysis in a week or more. These folks will have measurements and actual pictures to show us, and may have different recommendations for how to move forward based on what they are seeing.

My Oncologist pointed out that we are (as I know) past the point of hoping that the cancer will disappear. We are now in what I think of as the" damage control" aspect of treatment: we're addressing the issues that we can and using proven therapies to keep the tumors and lesions from growing, and shrinking them wherever we can.

He did mention that there is a point of maximal return, where the side effects of chemo outweigh the benefits of treatment. This is part of the reason why stopping treatment for a period of as much as a year will be preferred. I'd certainly like to be off of chemo, though it will be 9 more weeks (until just before Christmas) before I'm done with my 6 cycles.

I know that I am responding to the treatment, but I know I'm also sounding fairly negative about it. I think I had hoped for more shrinkage in the tumor, etc, and a "wow, we can't find this thing at all!" note from the radiologist, but this is still good progress, even if it means that I'm not done with this year's chemo yet. 

Maybe I'm just disappointed that I responded so amazingly well to chemo last year, an -- while I'm still responding -- it feels like I'm responding in what seems like an average and normal manner. By comparison it feels like a setback, but its all still forward progress. 

Kaia

My dog is continuing to be less-than-100%. She's eating and drinking erratically and has a followup blood test tomorrow (Tuesday) at the vet. She is very tired and seems to be feeling like crap.

The vet will be looking at her kidney values and also looking to see if she's still anemic. They'll be trying to find out if its a kidney infection or the beginnings of kidney failure. At just 10 1/2, she's hardly young but at the same time not old enough to where kidney failure is considered "normal". I'm still hoping that its an infection, based on  the fact that se seemed fine before we put her on all of these pills to cure her. I do trust that the vet has her best interest in mind, but it still hurts to know that I'm currently making my previously normal-looking dog feel like crap by trying to cure a problem that no-one knew she was having a week ago.

Scans and Dogs

This morning I had my long-awaited PET/CT scan. Usually they're no big deal, but this time I was feeling ansty, claustrophobic and itchy. There's really no reason that I should be having an allergy to the oral contrast prep or the radioactive isotope that they injected me with -- usually I tolerate these just fine and the biggest challenge is boredom. Today, for the first time, I nearly climbed out of the machine. The biggest thing keeping me in the machine was that I knew if I moved at all, they'd have to restart the scan. I want the results, so I toughed it out. It was far from the hardest thing I've had to do in my life, but it was harder than it has been before, for some reason.

I'll get the results on Monday when I meet with the oncologist and start round 4 of chemo.

Kaia, my dog, went in for a routine checkup last Monday and her blood test showed that she was anemic -- her red blood cel counts are at about half of what they should be. Further tests revealed wonky kidney values. This points to a kidney issue, but whether its a kidney infection or early kidney failure remains to be seen. Oddly, she was acting great before I took her into the vet (a highly reputable greyhound vet who is known locally as THE vet to take your greyhound to). This I attribute to the antibiotics that they have her on, which are fighting a tooth infection that they know she has, and another kind of antibiotic that is attacking the kidney infection.

Speaking as someone who has taken a lot of pills recently, I know how they can mess up your system in one way or another. What she really needs right now is to keep eating and drinking, and she stopped doing both as soon as I put her on the meds. Their solution? give her Prilosec, which is a stomach-acid reducer. Those who know me know that I am against the (seemingly) never-ending cycle of covering up one pill's side effect with another pill.

I have learned a few things from the 7 greyhounds that I've had over the years. The vet recommended that I soak her food in hot water beforehand to make sure she's getting enough liquid. I've done this before with dogs with dental problems. This works great if they'll eat soggy food, which Kaia won't. I tried it and she rejected it comepletely. So now she's got a stomach full of pills and no food in her. ANd I know exactly what that feels like. Then I remembered some old sick-dog cures: soothe their tummies with yogurt. Check. I used to feed my group of 4 hounds the BaNilla (Banana Vanilla) flavor yogurt from the co-op and sure enough, Kaia loves it. Plain yogurt doesn't generally appeal, I find. If dogs are having tummy trouble, boil ground hamburger, drain/strain and mix with white rice. Its apparently the best food ever invented (as far as dogs are concerned) and she eagerly ate it just a few minutes ago. I mixed in some of her dry kibble and she ate that too. So, 1 st emergency (not eating) averted. Now I just need to make sure she's drinking enough. Adding water to the food works -- if they'll eat it. In the past I have been able to get her to eat pill sby burying them in a wad of peanut butter. Now she's gotten wise to me and won't even eat straight peanut butter. So I now have to "pill" her (put them down her throat manually). To avoid the pills-on-an-empty-tummy problem, I pill her only after she eats.  So now we just need to watch her for the next few days and make sure everything is going in and out okay.

She's due back for another blood test this next Tuesday, the day after chemo for me. This will give an idea if the antibiotics are working, as we'll be looking for more normal kidney function and red blood cell numbers. If not, it will point to a bigger kidney issue. SInce she hasn't been acting like a dog with kidney issues, I'm hopeful that it is reversible.

So this next weekend will be a process of worrying about both myself (and my scan results) and about her. Its definitely a distraction, but not a fun one.

More info on all fronts likely on Monday or Tuesday.

Oops, make that round 3

So, it turns out that I had miscounted: I thought this was the last treatment of round 4, and it was actually the last treatment of round 3. Wow, it really seems like this has been going on forever. I think 2 months is still a long time, but I could have sworn it was 4 rounds in the bag. The PET/CT scan will still be in just over a week, and this will determine how much is left to go. Basically, it will be a minimum of two more rounds (6 more weeks) with a possibility of more. 

I was feeling great yesterday -- the day after chemo -- and remarked several times to Jen that I was amazed how normal I was feeling. We even went dumpster diving for cardboard (its a long story). But today I woke up feeling clasically chemo-y: achey, back pain nagging me a bit, some nausea, super-tired, distracted and not very sociable.

But, I also learned today why this sudden shift might have occurred.

I talked with a new "healing coach" today, who is the first person I've ever spoken with in this process that is fluent in the language of both western and alternative medicine. An RN with 35 years experience, her whole job now is to bridge the gap between the two. Usually -- and maddeningly -- practicioners are great at one side, and know only a very little about the other. Ask a doctor about acupuncture and they may say: " well, I suppose it can't hurt..." Likewise, they'll discount any herbal remedies and will most likely want you to stop taking the, because they don't know what they do or how they work. Ask (most) acupuncturists about interactions of carboplatin and gemcitabine and you'll get a similar blank stare. Its just not in their field of practice, and understandably so.

I was talking with the healing coach about acupuncture (which she thinks is great and perfect for me) and I was commenting on how it tended to make me feel tired and a little emotional/weepy afterward. 

"When are you doing acupuncture?" She asked. Which was an unusual question, I thought. I responded that I'd been doing it usually the day after chemo, but recently I've been moving it one more day out, figuring that they seemed to be interacting in some strange way that was giving me these uncomfortable reactions. "Are they giving you a steroid as part of your chemo?" she asked. Yep, they do. They give me something they call "Dex" (short for dexa-something) which is an anti-nausea med and also has a stimulant component that masks some of the chemo symptoms. She said that most docs or nurses won't tell you this unless you ask, but the steroid can drop you like a stone about a day or two later, leaving you tired and weepy. She said that it wasn't the acupuncture but the *steroid* that was causing this. Really good to know. I'm trying an experiment now where I move the acupuncture out to 5 days after the chemo, so its not having to fight the chemo drugs so hard and it can do its thing better.

She recommended that I not do chiropractic at all right now (it is far too jarring to the system for me right now, she said) but that I do pursue massage. She underscored the need to find a massage therapist that is specifically versed in treating people with cancer who are undergoing chemo. As an example, they need to know what I mean when I say that I have a port, and how to work around it, etc.

She also recommended that I look into a nutritionist, who would understand how the drugs affect me on a cellular level, look at vitamin deficiencies that'd have, etc. She pointed out that these are different from a registered dietitian (which I am personally skeptical of since (last I checked) dietitians they are still taught 1950's food-pyramid approaches to nutrition. She pointed out that nutritionists are usually not covered by insurance, but dietitians are. So, much learned today, and its nice to find someone in the medical field that doesn't just think that the "alternative" stuff just is a bunch of bunk, and finds value in it. I'm not going to treat my cancer solely with herbs, but I'm damn sure going to supplement the chemical treatment with a carefully reasoned list of helpful alternative therapies. 

So, in all I learned a lot today, even if I didn't feel very good.

A new symptom that I'm encountering is a fairly persistent sound of blood rushing in my ears, in time with my pulse. This happens when at rest, even. Its happening right now, has been for hours, and I'm sitting on the couch. My blood pressure is consistently fine and I haven't had any caffeine since this morning. My best guess is that its my blood cell counts dropping and thinning my blood, but its worth a call tomorrow to the oncology nurse, anyhow. I don't feel faint or light headed. It's just something  I'd like an explanation for.

Steve Jobs, Llamas and A Shaved Head

First of all, I wanted to take a moment to acknowledge the passing of Steve Jobs today, co-founder of Apple. His passing hurts me twice: first, and only superficially, as being the end of an era. I am a fan of Apple products, but I believe that he did truly think differently and forever influenced the way we interact with technology. Secondly, and much more importantly, his death is significant to me as he died -- too young -- of cancer. 

I'm sure he felt as I do that it is better to look forward than backward. The goal is not to seek out who to blame or what could have been. It is to make the best use of the time we all have. Anger takes away from this. I have plenty of anger, but when I remember to let it go I feel as if I'm putting my time to better use. 

I am reminded of the time that I had llamas when I lived in the mountains. (NOTE: this is actually a true story, though I realize it is starting out sounding like a joke...)

Llamas are quite large, and the pair that I had each weighed nearly 500 pounds and were 7 feet tall at the ears. Passive as they may seem, they are big, fast and are capable of smashing you against a fence or easily bowling you over on the way past. Llamas have incredibly acute hearing and are very sensitive animals. To be able to work with a llama -- to approach them to harness them or brush them -- you will need to calm yourself. Not just pretend to be calm or look nonchalant, either. A llama's hearing is so acute that they can hear your heartbeat from 20 feet away, or so I have been told. If you are relaxed, they begin to relax. If you are nervous or angry or scared, they can tell this as well. To work with a llama, you need to be relaxed, completely. This is an interesting and therapeutic exercise to go through.

By this analogy: if we let go of anger (or fear), we can approach life more easily. It is not easily done, but well worth it when I manage to succeed.

A Shaved Head

The photo is way overexposed, but you get the idea.

My hair got shaved yesterday by Crazy Helga, who reeked of booze at 3:30 pm on a Tuesday. Somehow, she was the perfect person to shave my head. No fanfare, sympathy, ceremony or chitchat, just buzzzzzzzt... and we're done. Now back to your reguarly-scheduled day.

I was glad to have Jen with me there, though. Its always a shock to see myself afterward, and I think watching the process is helpful for her, too. 

In general, today went pretty well. I had acupuncture and then a meeting wth the therapist. In an effort to combat the back pain I took the plunge and upgraded my home office chair to a real, grown-up one that is about as sophisticated as the space shuttle. I have been sitting in it for hours now with only minor pain starting now (an enormous improvement over the last one) and I'm still getting the adjustments right. This is more time than I've spent at my long-abandoned desktop computer in months. I consider that a plus.

Your loss and a Pretty Good Day

It is really too bad that no one took me up on that bet. I feel much better today than expected. I had the faintest of back discomfort this morning. I took nothing for it and it seems to have faded away on its own.

I slept late while Jen took care of work email, etc. I'm tired, but that's completely normal. I have no appetite, but no nausea either. I think the most important thing is that I don't feel like hell.Usually today (the day after treatment) is the "bad" day. So far, its going pretty well today and if I was scheduled to work tonight or had class I'd be planning to go. I have dinner with friends tonight and am definitely in for that. I might even eat something!

Today or tonight I'll shave my head -- its getting to that point where I'm finding too many hairs in the sink, etc. May post pics, though it always shocks me to see me hairless. THat first glance in the mirror in the morning is alarming and a big, depressing, constant reminder. People tell me that I look good with a shaved head. CLearly, people would hardly tell anyone otherwise, but I find that I miss my sideburns more. I could keep them, but then I look like a pro-wrestler. THen, the soul patch (which I 've had for about 11 years) becomes this glaring thing on my face: my last vestige of facial hair. I might get rid of that also, but without the sideburns or the soul patch or the earrings (that I took out permanently last year after scan after scan where they wanted me to remove all the metal) -- I'll look very, very "normal."

On the plus side, the shaved head lends itself well to a variety of halloween costumes.

Round 3 and Sick Chefs = Bad

Today I begin round 3 of chemo. The last treatment of round 2 had many issues, which will be solved today with a 3-pronged approach:

1) Deep breathing exercises to help calm me.

2) Hopefully having a good needle-sticker

3) Armloads of prescription drugs.

I suffered from nausea and anxiety last time. The anxiety was because of the increasing (or at least, not improving) difficulty in getting the port needle seated right and pain-free. They did give me a topical anesthetic to use on the port site. The problem is that it is fairly short-lived, but it also takes a little while to start working. So I need to plan ahead fairly accurately to make sure that the topical stuff is on and the window of effectiveness is open. Last week, there we delays upon delays so the anesthetic had worn off. Today I'll be bringing the stuff with me so I can keep reapplying it. 

The nausea was also related to the delays. Chemo was scheduled to take about 45 minutes but instead took more like 5 hours. I really need to eat something little every 2 hours to stave off the nausea. Having had a (too light) breakfast, which had also worn off before the treatment began, I was essentially doing it on an empty stomach. What I brought with me was Fiber One bars, which (I found) can actually aggravate an empty stomach. I'm bringing Ensure today, which is really only consumed by people going through chemo and people over 65. At least no-one there will look askance at me, since all of them are going through chemo and well over half there appear to be over 65 also.

I will also be taking my prescription anti-anxiety and anti-nausea pills pre emptively. In addition, I'll be taking my exycodone, my as-needed pain relief booster. Thus drugged up, I will be completely unsafe to drive, but luckily my brother will be the pilot today. We'll also be getting a substantial, normal-person breakfast which will carry me through.

As I mentioned, part of the anxiety and nausea is psychological. That part is hard to counteract, other than through yogic deep-breathing. We'll try that and see if it works. It certainly cannot hurt.

Restaurant Flu = Bad

Jen and I, coming back from the cabin last night, decided to go out to eat for lunch. Ginger Hop, the new(ish) place in Northeast that is in the old Times space, sounded good, even though we've had really hit-and-miss service there. I have enjoyed the food and they do have some very tasty and well though-out menu items.

Arriving, we found that they were open, but only technically. The entire wait staff was sitting at the bar and the restaurant was empty. Once seated, and food ordered, we were close enough to the kitchen to hear this exchange between our waitperson and one of the chefs:

Waitperson: "You get a flu shot this year?"

Chef "Nah."

Waitperson. "Well, maybe you should."

Jen and I looked at leach other. During chemo, a person's immune system is suppressed, meaning I'm incredibly susceptible to getting sick if people are sick around me. 

NOTE: If you and I planning to get together and you're sick, or have been around sick people, we should probably reschedule. Getting sick could be very dangerous, and -- at a minimum -- could delay chemo for a week or more if the doctor decides its just not safe to treat me until I get better. Chemo essentially gives a chemo-person the immune-deficiency part of AIDS. To be clear: I do not have AIDS.  But in a similar way, simple colds and flus can be potentially lethal to someone who is not able to help fight the ailment off on their own. Most likely, the worst case for me is that I'd end up hospitalized for a few days, but still: that sucks.

So, when our waitperson returned with out entree (vegetarian spring rolls) I asked: "this is going to sound like a strange question: Is there someone sick in the kitchen?" I explained that I was going through chemo and getting sick wound be very bad for me. She understood completely, took the appetizer back and said she'd check.

While waiting, we wondered whether we'd get a straight answer, and had mostly decided to leave and go somewhere else regardless.

She returned and said that yes, there is someone sick in the kitchen, but they did not handle our food. 

We said we just couldn't risk it, thanked her and apologized for the hassle, and took our leave. She was very understanding.

Here's a tip: if you're sick, and work in a restaurant, don't go to work. Or better yet: if you're the manager of a restaurant, send staff home immediately if they're sick. Seems like you can't risk the bad press if people get sick from eating at your place.

We settled on Panera, just down the street at University and Hennepin, Northeast. The bored, clock-watcher counter staff were all coughing a bit, but I noticed that the sandwich maker put on fresh gloves and (as far as I can tell) didn't sneeze into our sandwiches. The tables were filthy enough, though, that neither of us wanted to sit nand had each independently reached this decision. It looked like a middle-school school lunch room just after all lunch periods have ended. Crumbs coated everything, and dried liquid spills were common. We asked if they could clean off a table and they did. They seemed unprepared for this, and had to find a washcloth that came from a bucket filled with gray-brown water. We were left with a dripping-wet table and chairs. We asked if perhaps they could dry it also? So sorry for the inconvenience. They obliged, This time they found only tiny foodservice paper napkins that proke apart. I noticed that no one cleaned any other tables after this, though there were at least 5 or 6 slackers seemed bored behind the counter.

Jen and I are in touch with the fact that we're high-maintenance in restaurants, but being germophobic is (or should be) part of the game when you're immunosuppressed. Lesson learned? don't eat out. We decided to make a nice, safe, dinner in.

TANGENT: Jen and I have decided that if were were ever to be on the Amazing Race, we'd be known as the "judgemental couple". We're really good at being snarky about people, places and things, and that just plain makes for good TV. 

Back to the restaurant thing: As a rule, I wash my hands constantly (its the first thing I do when  I come home) and open public restroom doors with my foot or with my sleeve over my hand. I'm not quite howard Hughes, but give me a few years of chemo and see where I end up.

I'm feeling pretty good right now (okay: really good -- all the drugs have kicked in). Lets hope it stays that way. I predict a blog post on Tuesday about how I don't feel very well. Anyone want to give odds on that?

The Cyclical Nature of All Things, and The Port

As I come to the end of round two, with round 3 set to begin next Monday, I feel surprisingly good. Oddly, I feel better here in the final week of round two than I did in the final week of round one. Chemo is cumulative to a certain extent, and it is pretty normal to feel progressively worse overall after each consecutive round.

My best guess for why this is that that I'm on a smaller amount of drugs overall. The pain has lessened over the past week, disappearing entirely at times and -- when it does resurface -- is managed with over-the-counter Acetaminophen. This is a far cry from the time, just a month ago, when I was hospitalized with pain and the narcotic painkillers they used there had only minimal effect. As the chemo progresses, the pain lessens. This means I take fewer painkillers, which means I have fewer side effects, which means that I take fewer other drugs to counteract the side effects that the painkillers create. Also, I switched a few weeks ago from the methadone to oxycontin. 

Pain-wise, much will be revealed next Monday at the start of round 3. Previously, the back pain has traditionally spiked a within a day of getting chemo. If I can get through this next treatment on Monday with no (or minimal) back pain, I'll start tapering off the oxycontin. To compare, the painkillers and side-effect-producing drugs that I have been on have more side effects than the chemo. Which is saying something. Just regular old chemo is a refreshing spring breeze compared to the armload of drugs to cover up the pain.

I have been doing normal-person things and having a surprising amount of energy (for a guy on chemo) in the past week. What this translates to is that I'm able to fully look after myself, including driving, shopping, laundry, dishes, walking the dog, etc. I still get tired, and fight some residual nausea, but I'm learning (or relearning) how to manage these things as well. I'm pleased that I'm able to even help others with their stressful situations at times, which feels good. The (seemingly) one-way flow of care from other people to me is extremely touching, but feels like a huge imbalance is created and a debt of gratitude arises that feels impossible to repay. I know: this is not some scales that must be balanced, but it's nice to be able to give back when I can. I asked recently after a friend's health and he seemed surprised that I'd be asking. This actually hurt a bit: it isn't some sort of competition. Just because I have this stupid disease doesn't mean that I stop caring about those around me. Is my disease more serious? Who cares. I still want to know about others and just because I've got this thing going on doesn't mean that people can't tell me about their problems. I appreciate it when I'm allowed to provide support in some way. As I said, I feel like I've been the recipient of a lot of caring, and if I can pay it forward in some way it makes me happy.

Port Woes

I'm still having some problems with the Port a Cath (the borg implant in my chest that allows them to "quickly and painlessly" poke me to take bloods and do chemo. Something to do with the placement, or my skin, or who knows what, means that the regular needle isn't quite long enough, and so it pops out. 

I'm attaching some pix so people can visualize what I'm talking about. Sorry if you don't like looking at needles. I really don't like looking at them either.

The purple thing is the port. It currently feels like a bump under my skin. The needle goes in the porous area with the 3 bumps, which is "easily located". What this means is they push really hard on my chest with their fingers, trying to find the 3 bumps. The other odd contraption with the tag on it is the needle assembly.

So, the normal needle pops out. And then nurses say, "that shouldn't happen." I've heard this more times than I can count, and let me tell you: I never get tired of hearing it. The solution appears to be to use the longer needle, but that one is just a tiny bit too long, so it is a little unsteady and wiggly. If that sounds like something you don't want to experience: you are correct. I do not recommend it.

Because they've had so much trouble accessing the port, I get anxiety and nausea before they even begin. I realize that this is psychosomatic, but understanding where it comes from doesn't really change the outcome. Right now my main concern with chemo is the needle poke and the the actual infusion process. I feel bad when an experienced nurse tries to start the IV, fails, gets another nurse, who also fails, and they eventually get the experienced one who nails it right away. And then everyone is embarrassed because they couldn't do it and they know that they're causing me pain. And then I'm jumpy because they've already poked me 3 or 4 times so I wince no matter what. But for some reason I have a hard time saying, "you look young. I don't think you'll be able to do this." 

So, is the port better than the arm IV? Overall, no. If you have a good nurse or phlebotomist, its easy in either case. Having a 1" needle pushed hard into your chest is no cakewalk, even if they get it right, and is at best a very unpleasant sensation. Overall, the port has been more trouble than the arm IV. The plus to the port is that the chemo can run faster without pain, burning, pinching, or cold, all of which sensations the different drugs give. There is none of that during actual infusion, but if they run it too fast the nausea sets in. Mainly, I decided to do the port for the later rounds of chemo, where the veins have traditionally deteriorated and it becomes harder and harder to find a vein. 

Anyhow, lets hope that the back pain stays away and that I continue to feel better. At the end of the next round (in a little over 3 weeks) I'll have a followup Pet/CT scan that will tell us how much we've shrink the tumor and lymph nodes, and whether they can still see spots in the lungs. This will determine how much more chemo I'll have and I'll be anxiously awaiting the oncologist's interpretation of the scan. Much to be hopeful for.

Blogger Commenting

Since I have disabled the anonymous posting option, I have been getting a few emails related to trouble posting comments. If you have a Google account (or AIM, or LiveJournal, or OpenID, or blogger) login, you *should* be able to comment. You'll need to log into that account when you comment. If you have a Google account (as an example) it will make you log in to that. I can't think of any reason why it wouldn't accept the Google account login, but apparently it does not for some people.

I personally don't have a problem posting, so I can't replicate the problem. Admittedly, it *is* my blog, so it seems normal that I wouldn't have a problem -- but having said that: it still makes me log in every time when I want to make a comment on my own post. I use my Google ID as my login.

I did some searching and found this link, which takes one through he process of logging in and commenting. Perhaps it may help?

http://www.google.com/support/blogger/bin/answer.py?hl=en&answer=42399

If anyone who knows Blogger better than I -- which is virtually everyone -- can offer a possible solution, it would be very helpful to those who would like to comment but cannot.

Likewise, if you were once stumped -- but have now managed to solve the puzzle -- please post your solutions here so they may help others.

Thanks!

Apology; also: No Apology

I appreciate deeply all the comments I received the other day. I was at a very low point and am feeling substantially better today. I feel that there is a Minnesotan-ness (those who live here are accustomed to the stoic Swedishness that pervades the culture statewide) to pretend that it is all fine and to push it down inside, to pretend that its all fine. Some may think I'm a baby for admitting my pain and sharing it, and it is true that many have endured more with less complaining. I choose to be transparent in my feelings from day to day and I can tell that this makes some uncomfortable. As one pointed out: I am a private person and I have chosen the (perhaps unfortunate) path of living a fishbowl existence. I do make this blog public so that people who know me and care about me can follow along as they wish. I'll have bad days and good days, and it may be uncomfortable to read. I have many times decided (and undecided) to make all of this private for me only, but then I know that for many it is a source of information.

My comments last time, written as I mentioned in the space of a few minutes, made mention of the fact that I was feeling abandoned or unappreciated, and for that I do apologize. I am prone to hyperbole and I do have many who check in on me in a variety of ways. My intention, believe it or not, was *not* to make people feel guilty, but to show what I was feeling at that moment. At that precise moment I was feeling lonely and it was one of those 10 minute periods where a phone call or email would have been just the thing. I *do* get them, but I was feeling needy. So yeah: I was reacting and lashing out. I do appreciate y'all, truly.

It still does make me uncomfortable that there are people that I do not know (and people that I *do* know but am not currently on speaking terms with) who check in. I have decided that, for the benefit of those that know me, I will continue to keep this an open discussion. If you're uncomfortable with the things I say or they seem too negative, check back in in a week or two and see if my mood has improved. Best bet is to catch me on a chemo off-week for the laughs.

Brainfail

Anyone who has been diagnosed with depression or any sort of similar chemical imbalance will appreciate that the brain is a filter through which all is interpreted. If your arm hurts, we can step away from it. If your brain isn't working right (for whatever reason, in my case because of depression, pain and an excess of poisonous chemo drugs that affect me from head to toe) you're not aware that it isn't working right. Or, in my case, I was aware that it wasn't working right, but couldn't quite stop it.

I get chemo on Mondays, for two weeks in a row, and then have a week off. The drugs flood my system and make my skin a sickly greenish yellow color. It feels a little like food poisoning: your entire body is just... off. Not quite right. It's hard to explain. It's like your own body has been replaced with a loaner that doesn't quite fit right and all the parts are still adjusting. The immune system kicks in and fights the chemo (and the cancer), which makes a person tired and generally No Fun to Be Around. So its an odd sort of sick. It sucks, and then it gets better a few days later. As of today I have 11 days off until the next treatment so I will be feeling much better day by day.

A note about the pain

I have talked about the pain off and on, but I don't know if I've ever (or often enough) defined what I meant. Partially, it just kinda hurts all over. Like I fell down some stairs a week or two ago. Everything is a bit sore. But the specific pain (and something that I didn't experience with last year's chemo) is the damned persistent back pain, partially so annoying because no one really seems to know what is causing it. Everyone's best guess -- and this is after talking to a neurologist and 3 different types of cancer docs at the Mayo clinic -- is that the tumor in my pelvic wall is somehow pushing against a nerve. Or something. Yeah, that's what the best minds on the planet came up with. Regardless, this hypothesis seems to be confirmed at least somewhat by the flare up in pain that I experience when I get chemo. Basically, I like to think that the chemo is poking the tumor with a stick and the tumor doesn't like it. Its nice to think that there is a battle going on on my behalf that might be going my way, but not-nice that it's going on in my body. So the tumor flares up and I start downing the funtime pills, and then I get sleepy and useless and annoyed that I can't accomplish anything (like driving, or writing, or work, or school) because my head is stuffed with cotton balls and vinegar. And so I get pissed, and I blog about it. I agree that it it's no fun to hear about someone else's pain, especially when there's literally nothing that anyone can do about it. Worse yet: this is a pain that is *caused* by a $6,000 treatment two Mondays out of 3. Yep, my insurance company is paying them to make me hurt, and then paying to make me *not* hurt, via all of the prescription drugs. It is all for the greater good, and I'm sure there's some lesson to be learned about falling down a few times before you succeed, or something. I want to get the cancer to a point where it is as gone as its going to be, and that means I need to walk through a little fire, so be it. Today, I am strong enough. No guarantees that I'll feel the same positivity in a week or two, but I should come back around again.

2 down and 4 to go

This is the end of round two, and its almost unimaginable that I'll have to do 4 more of these things, or another 12 weeks. Basically, I need to find something to occupy my mind -- stat-- before it turns to jelly. I've been working on a novel and have started another long writing project, and hopefully I'll be able to focus on those. The novel is a bigger undertaking that is practical at this point (I started it before the diagnosis) with complex plotting, pacing and world-building twists and turns that I just don't have the clear head to master, right now. I do want to get back into that world, but I'd like to do it at a time when I can do it justice, and also at a time when the characters can be a little more positive. The last time I sat down to work on it, they all got in a nasty argument. So -- for me anyhow -- the writing that I produce is heavily influenced by my own mood. It's still a solitary activity, though, so I do need to find more to keep me busy.

Keeping busy and a Request

Related to the above, Jen suggested the other day (brilliantly) that I find freelance design work. Its a great idea. I did that professionally for 10 years or more before deciding to become a school teacher as my second career. I still enjoy the design, I just don't feel as fulfilled by it as I do by teaching. So, if you know of anyone who is actively looking for a freelance (piecework, offsite) print designer -- or freelance writing work, for that matter -- feel free to send their contact info my way. I have all the latest and greatest design software and hardware and I still keep my hand in for design projects for the band and for a few friends.

See: that's a positive thing that people can focus on, right? I *am* trying.

Changes to blog and Generally feeling Pariah-ish

First of all, I have made some changes to the blog. You'll now need to be a member of the blog in order to comment. I've been getting more unsigned "anonymous" posts than I like, and this blog is really intended as an online diary for me that I have opened up for those that know me to read if they want to know how I'm doing. So, sorry if posting anonymously is your thing: if you want to send me a comment or note and don't want to do it under your own name, feel free to send me email directly. If you know me, you should have this already. Email is preferable to facebook, FYI.

Who knows: I may decide to make the blog private and people will need to ask permission to have access. This is a pain, but I'm starting to get worried that I have no feedback about who actually is viewing it. I don't like *not* knowing who is reading what amounts to very personal thoughts intended for myself, friends and family. I have been getting 160 or so pageviews on every post, yet only a few comments, so I know that many are reading. Its not the kind of blog where I crave higher readership (unless its people who have bladder cancer that may actually learn something there). So the disconnect between reads and comments/feedback seems odd to me. I had assumed that only 10 or so people were checking in.

Anyhow, I guess this leads into the next comment, wherein I reiterate that this is a lonely-ass disease to have. No one calls or sends cards, write emails or notes (or, apparently) comments or leaves feedback on the blog. People may be tuning in and may care, but I have no feedback on this, so it feels like no one notices or cares. Quite honestly I have felt like my overall friend-contact has dropped dramatically since I got the revised, metastatic diagnosis. Maybe its just that people are laying low and waiting for the storm to pass (me finally dying). I dunno.

Anyhow, its the sort of thing that -- when added to the anger and the uselessness and the tiredness and the pain and the drug side effects -- starts to make suicide seems like a viable option. I can truly understand how people get suicidal, and believe me the tide has turned and every day is a process of reminding myself why I shouldn't just get it over with.

And it really grates when people tell me that all I have to do is think positively. Dammit, it fucking hurts and it all seems completely pointless. How in the hell am I supposed to think positively? Clearly, I am not thinking positively. Allow me this. I know that people have beat cancer by thinking positvely. I may not. I already have a lot of guilt about this. If I don't beat it, is it because I didn't think positively enough?

I have a great family and a one-in-a-million girlfriend, but the few friends that I feel that I still have any contact with spend our time together watching me uncomfortably, not sure how they should act around me. I hide the pain and bolster my mood artificially, not wanting to be a downer. Yes, this thing is on my mind all the time but I like to think and talk about something else. How should you treat me? I have no damned idea. I've never spent any amount of time with someone going through chemo. Basically, treat me as normal, except don't invite me to events a few years down the road, don't invite me to super physical outings, and be understanding of my need for sleep.

Cancer is not a disease that anyone knows anything about -- with good reason. You probably know one person besides me with cancer, and it may have been a distant aunt or something. One way you can help me if we're spending time together is to pick up on cues when I am getting tired that I might need a nap during the day or might need to head to bed -- even if its 9:30. Don't feel like you need to entertain me or like you're abandoning me early. If I'm tired, I'm just going to get more tired until I sleep.

Anyhow, more rants and I'm what feels now like complaints and lists of things that people shouldn't do, which is not what I started out intending to write. Regardless, these are a few things that have been bugging me of late.

I was just talking with my mom and she was telling me that everyone wants the happy, smiley Michael back (but that we'll take whatever we can get, happily). I want that guy back also. Its important to note that he may be gone for good. This makes me angrier than anyone can know.

Not much new

Not much new to report, other than I am becoming increasingly worried that my mood is deteriorating to the point where I'm pissing people off left and right, both in person and in print. I hope this is not the case. Damn this entire thing and the effect it has on me. I hope I still have a few friends and family left when it is done with.

Other than that, more chemo on Monday.

More Cancer Drugs, and Why I Hate Pepito's Parkway Theater

Yesterday I met with the Palliative Care doc. I have previously joked that one could become a palliative care doc in a weekend correspondence course, since it seems like they only prescribe 3 drugs: morphine, oxycontin and methadone -- all for severe pain, and they're essentially the same. It turns out that Palliative care can help with a cornucopia of things. They can prescribe drugs for stomach pain, indigestion, diarrhea, constipation, nausea, depression, insomnia, anxiety... you name it: we cover it all up. But that's all they do: prescribe drugs. So they're more like a cross between a pharmacist and a general practitioner.When I mentioned that I wanted to explore more non-prescription remedies, feeling that I wanted to be on less pills, not more, it became clear that there is little that the Palliative care doc and I have in common. She gave me a pamphlet for a place across the street that does all of the natural stuff including massage, acupuncture, aromatherapy, etc. It was clear that she didn't think much of it, but she's a pill-pusher by trade. I'll call them today and see how they work with insurance, if at all.

Also in the course of the meeting, Dr Bonzo (the pill-pusher)  expressed surprise (or pretended to, anyhow) at all the methadone side effects I was having, including during my tapering off. None of them should be happening. I love hearing that. Sr. Bonzo gave me the option of switching to oxycontin (remember Rush Limbaugh?) and after careful deliberation with my mom I chose to switch to it. They are equally addictive but I hope that it will treat the pain better with fewer side effects. So far (2 doses in) it seems more neutral with fewere side effects and as-good-or-better pain control. The big worry for me is that taking oxy-(fill in the blank) *does* feel good, whereas methadone does not. I am worried about this, long term. When trying to avoid addiction, your painkiller should not be any fun to take.

So, then we go off to Pepito's Parkway Theater in Minneapolis to see Cinematic Titanic. This is basically the Mystery Science Theater 3,000 guys (MST3k) doing their bad-film-riffing live in front of an audience. I haven't seen them live before and I was very much looking forward to it.

The show was great. What happened *at* the show will make me forever think less of Pepito's and the Parkway Theater.

Here's what went down. So, were sitting up front at these table things (we paid extra to have tables closer to the stage) and I have to get up to use the restroom during one of the warm-ups. I had part of my bladder removed about a year ago, so I have to go more often. Its annoying but livable. I come back down the aisle and find that my chair has been removed from my table and there is a guy in a wheel chair siting there. He's probably in his late 20's to early 30's . I should probably point out that I'm not alone at this table, and it seems like everyone figures out at the same time -- me, Jen, my brother and the wheelchair guy, -- that something is up and he can't sit there. The usher realizes his mistake (he had seen the empty seat and had made room) apologizes and and moves the wheelchair guy about 2 feet away from Jen (in a pretty open corner of the auditorium). Now, I don't think I'm being overly-sensitive, here, but I notice that the guy is very fixated on Jen and is staring at her openly. She may have reflexively smiled at him when turning around to talk to (what she thought was) me, not knowing that they'd made the switch. Maybe he has taken this as her being interested in him, even though -- when she figured out a split second after turning around to talk to "me" that it *wasn't* me, she said to the guy, "Oh, you can't sit here. There's someone sitting here already." This is fairly unambiguous, I think. It sounds like it was polite but direct.

So the guy is now about 2 feet away, so close that the wheelchair is in contact with her chair. He keeps looking at her. It's making me uncomfortable. I do obvious stuff like put my hand on her arm and she eventually feels uncomfortable enough to move away, closer to me. Not because he's in a wheelchair (which is neither here nor there) but because he's staring at her and creeping us both out. Some movement catches my eye and I realize that the guy has opened up the front of his sweatpants and is actively rooting around in there with both hands. I don't know what he's doing, but it goes on for about 30 seconds. Possibly he's adjusting his catheter (I wore one myself for 2 weeks and they are very uncomfortable -- though I never once adjusted it in public) or maybe its something worse. But regardless, I really don't want this happening 2 feet from my girlfriend. Call me strange and old fashioned. Let's also bear in my that I'm trying to have a relaxing (and not inexpensive) evening out to relax and forget about chemo and cancer for awhile. 

So, I storm up to the lobby, find a burly-bouncer looking guy doing nothing whatsoever, and explain the situation. I get a blank stare. The 3 women at the concession counter slowly stop talking and also stare blankly. I'm trying to find every was to say (that I can think of) that some guy is -- as fas as I can tell -- trying to expose himself to my girlfriend in their theater and they appear to be giving it about the same priority level of a squeaky seat. Somewhere in there, what with my persistence and increasing disbelief that no-one cares about this sort of thing at Pepito's Parkway Theater, the burly-bouncer dude says "I'd better tel.... ( I can't hear the name) and wanders off in the opposite direction, away from the theater, in no particular hurry. There is clearly no preplanned process here for any sort of security concern.

Still fuming, I go back down into the theater. Mr. Fun-in-the-pants is leaving as I sit down and mutters something about "leaving your 'perfect town'". A few minutes later a managerey type comes and asks me for the story, starting from a place of disbelief, as If I'd said there were aliens coming out of the walls. I explained my story clearly again and the guy, extremely dubious, said they'd "try to keep an eye on him". I would have expected that he'd be asked to leave at very least. No, they're still trying to find a place for him. They come back a few minutes later and say they'd like to put him here, in the same exact spot. Next to Jen. I say no: he needs to be far away from us. And I had to insist. I get a look that makes it clear they think I'm being insensitive.

No, it cannot be overlooked that this man was in a wheelchair. But it seems that Pepito's Parkway theater was ommibilized with fear by this fact. Clearly they had quickly decided that the concerns of a woman -- subjected to essentially indecent exposure -- was nullified by the fact that the perpetrator was in a wheelchair. Where do I figure in: the guy with terminal cancer. Do people add more or less weight to my claims because of my situation? Honestly, I'd hope I'd be held to the same standard as everyone else, and I'd hope that this guy would also be held to the same set of societal norms that we all establish and agree upon. If I take too much oxycontin and my pants fall off in a theater, this is a partial *explanation* for why it happened -- but not an excuse. I could still be held accountable for indecent exposure, even with the cancer pain and prescription narcotics. For the record, I have not yet done this, but perhaps I should try it at Pepito's tonight and see how they deal with it. My guess is that I'd get relocated to a better spot closer to the stage and get free Mountain Dew.

When Jen called today to talk to the manager, he did not apologize, and in fact *bitched her out* for saying that a guy in a wheelchair could be creepy. She was not saying that he was creepy because he was in a wheelchair. She was saying that he was in a wheelchair and was also acting creepy (and creepy is an understatement). She cancelled her ticket for tonight. The manager should have done mush more to protect his business and his reputation. Perhaps, when the initial report came in, having a manager kneel down and talk to the guy in a low-key way to see how he's doing/feeling would have given them a sense of his condition. Its where I'd start as a manager. They were petrified of tossing him out so instead they froze completely, did nothing, and (like so many rape cases) put all the burden back on the accuser.

I do not like how our society treats the physically (and, in this case, possibly also mentally) disabled as invisible. I have spent time on crutches and in a wheelchair and you become invisible. I have a terminal disease and technically am disabled because of it, though it is not outwardly visible, though there may be a time that I too, am confined to a wheelchair because of my condition. Being physically disabled is a lonely state to be in that I don't envy, and I don't hate this guy. What I *do* hate is Pepito's male-chauvanist "you're just a woman" attitude that they seemed to have with Jen on the phone, and their hyper-lawsuit avoidant approach (without realizing the possibility for other lawsuits becuase they are so petrified.)

Anyhow, if anyone feels like calling the Pepito's Parkway theater, be my guest. I have a ticket to go to tonight's show as well with a large group, and Jen was planning to go as well (something that I was very much looking forward to) but now she is not going and I really can't blame her. They promised to refund her ticket, but as of this writing they have not done so. I'm pissed. Not at all at her, but at this situation and at Pepito's Parkway's bungling of the situation. 

I think that if Pepitos' Parkway were to say of the audience before the show "Ok, raise your hand if you do *not* want to watch some guy root around in his underwear right next to you for a minute or more?" I bet they'd get a solid 90% or better. Though, they would likely subtract the women from those voting, because their opinions and feelings don't seem to matter. Welcome to the 1950's, Pepito's. 

6 Rounds and a Cancerey evening

Around about 2 am I was awoken by intense low back pain and lower abdominal pain. This is what I've experienced off and on to varying degrees for the past 6 weeks or so. The pain last night was near to the level that had me rushing to the ER two weeks ago. The difference last night is that I've already been through the pain-management ringer. I'm already *on* the heavy-duty painkillers they'd prescribe, the only difference would be that they'd be IV painkillers, which work more quickly. Last night, I also suffered from severe chills, shaking and teeth chattering. I simply could not get warm. So I took 2 oxycodone (10mg -- a lot) and waited it out. Jen, ever concerned and supportive, watched me like a a hawk until she was sure I was out of pain. During this time I also talked to the on-call oncologist and proposed my theory: since this exact same thing happened two weeks ago, this might mean there's a related cause: I have chemo, and two days later I have a strong, painful kickback from the tumor. Like stirring up a beehive. She thought there was some validity to this, and has seen tumors act similarly, but recommended that I talk to my regular oncogist. I left a message for him this morning.

I also found out today that I am scheduled to have 6 rounds of chemo. Last year I did only 3 rounds, and that was tough. At 3 weeks per round, this  works out to 18 weeks, or 4/12 months. I have not heard this information before so it means that I'll need to get my mind around doing chemo until nearly Christmas.

Y'all should start a betting pool as to when my hair starts falling out and I will need to shave my head. It will likely need to be in the next month. I'm currently planning to have Ming the Merciless do it at Hilda's Hair Hut. Or we could do it at my place as a party, if anyone actually knows how to do it without massive lacerations.

p.s. My new thing for winter is going to be hats with hair built in. Like that rasta hat with dreads? Priceless.

Feeling cancerey

I had the first treatment for round 2 yesterday. It was basically as planned, which is not to say that it was uneventful. The 2 drugs that they give me, Carboplatin and Gemcitabine, both can cause nausea. We had to stop the treatment more than once and slow down the flow becuase I was afraid I was going to vomit. Everything takes longer than planned and I grow weary of doctors and nurses telling me that "it shouldn't be causing nausea" becuase it is, for some reason, causing me nausea. Does that mean that I'm imagining the entire thing and stop whiling, or does that mean that perhaps we should dwell not so much on the middle part of the bell curve where the "average" patient sits, but on me--the patient sitting in front of you that *is* having this reaction, regardless of whether I should be or not?

I also grow weary of doctors, hospitals, clinics, waiting to have my name called, appintment makers, picking up prescriptions, having by blood drawn, weight taken, my lungs listened to and my blood pressure taken. I hate being asked about things that are right there in my chart, and I really hate being asked how are you feeling?" by doctors, nurses, and nearly anyone because it is never a short answer when you've got a laundry list of things going on and subtle-to-severe side effects of the various meds and chemo drugs that push and pull at each other. And I always feel that I should answer "fine" becuase that's what we're trained that people want to hear. Do they mean on a scale of 1-100 with one being dead and 100 being rapture? Are any of us really better than about a 75 on this scale? (29). Do they mean compared to yesterday? (not in as much pain, though my mood is worse and I am more fatalistic -- so is that a net gain?)  are they asking about my blood pressure (normal) my digestion (unpredictable) my pain (changes hourly) my depression, (changes hourly as well), my weight (down) my 12 month outlook (average) my appetite (none) my nausea (changes hourly), what? How do I answer this? Do they mean compared to pre-cancer days? (very shitty). Today I finally decided on "cancerey". Which is annoyingly vague (as annoyingly vague as the original question can be). What should one ask? Specifics are good, and will help me to answer in a useful way, if information is desired. Though my health concerns occupy 92% of my own brain processes at any given moment, I am always happy to talk of nearly anything else as a distraction.

On the subject of nausea: problem with the nausea is that not eating makes it worse, and also eating makes it worse. So during chemo you know that if you're feeling nauseous it probably means that you haven't eaten recently enough, but the process of eating now will make it worse. But if you wait, it will get even worse. So this is why, in my experience, anti-nausea remedies (prescription and herbal) are so helpful to people undergoing chemo. These days I set a timer for 2 hours and make a point to have something little. This avoids most of the not-eating nausea as well as the eating-nausea.

I have been sleeping an enormous amount recently, which is good in terms of recovery, but might be hinting at depression as well. The cause is easy to see, but fighting it off is difficult without medication, since it is increasingly difficult for me to do the things (get lots of exercise and sunshine) that can prevent depression. I may need to add in one more pill to my daily handful, though I hope not. If I can get this bout of chemo finished before winter, I think my chances are good at staying off antidepressants.

Other than that, how am I doing? About the same. Still angry at this thing and tired of the myriad of social/emotional garbage that comes with the physical junk. My most recent source of frustration is that the back pain has been returning. This has been severe enough that I stopped tapering off the methadone and actually went up on my dosage yesterday. I'm still at less than I was (they started me at 30 mg per day and now I'm at 15) but it makes me angry that I will have to stay on this toxic and addictive drug a little longer at least. The side effects are severely life changing, and you do not want to be on this drug. Is it better than the pain? On the whole, its about even.

I get chemo another treatment next Monday, and then I have a week off. I'm not sure if I'll have one more round before my followup PETCT scan or not. The followup scan will tell us if the chemo is working and will give an idea of how many more round I'll have to do this year.

I have been told that "chemotherapy is in my future" -- meaning I'll likely have to do a few rounds every year for the rest of my life. The docs have explained to me that these treatments are "palliative and not curative" meaning they have no illusion of making this cancer go away. It will always be there, it is now just a mater of baling out the sinking ship for as long as we can. So that might be contributing to my depression as well.

Round 1 winner: me

My first round of chemo is technically done. It consists of two weeks of treatments followed by a week to rest and recuperate, and I'm in my "off" week right now. My energy is low but steadily improving. I actually have plans to go to the gym on Friday, though I will be amazed if I manage more than 5 minutes on the treadmill. I won't push it: if I've learned one thing during this experience, it's how to read my body and know when I'm pushing it too hard.

The pain has been steadily decreasing over the past week or so, having seemed to level off at a generalized tightness and faint soreness in my lower back. Sitting at the computer chair (which I'm doing right now) aggravates it a bit so I'll make this brief for my own selfish ends.

I called an talked to Dr. Bonzo (the Palliative Care Doc.) when I realized that the pain was decreasing. The Methadone (which I'm on for pain) is scary-ass shit, and I don't want to be on it one minute longer than I need to. With the pain gone, there is no reason for it. The problem is, there is a reason that this is used as a replacement for people who are addicted to heroine. NOTE: I am not addicted to heroine. Nor have I ever even tried it, but I sincerely think that there are Facebook friends of mine who believe that I'm on methadone as some sort of drug-recovery tool. I always say that the only thing more dangerous than no information is a little bit of information. But I digress.

So I'm on Methadone. If I were to go off the drug cold-turkey, I would have withdrawal symptoms similar to going off heroine. Ever see Trainspotting? Get the buckets ready. I would have the shakes, the vomits, the squirts, sweats, and generally wish I were dead... for a period of days. So I must follow their tapering-off schedule, which takes 9 days. Today is technically day 2 and it is going all right except for a few random muscle jerks and twitches and a poor mood in general.

The nausea is also fading, but I've learned a few things about keeping that in check as well. Its sad that this is becoming routine, both for me and for the people around me. No one should ever get used to this feeling.
 
My next round starts up next Monday, 9/12.

Halluciations and Other Fun Stuff

The pain did return today, and is fading as it gets later in the evening. Possibly a trend developing. So far, the all-natural remedies are working quite well to keep the entire transit system moving without any roadblocks or speed related incents.

For the past 4 or 5  nights I have been hearing music at the edge of my hearing. It sounds like the neighbors next door have their stereo on and you both have your  windows open. Its not like a radio station where I can say "I'd like some Latin beats, now." No, its more like like occationally I hear something that emerges from the background noise, finding (or being given by my sunconscious) some rhythm, structure and tonal accompaniment. It turns out I can imagine some pretty cool and pretty complex stuff. Last night it was Norwegian electric fiddle folk, and the other night it was a 70's era stadium rock band. 2 night ago it was bagpipe music (I played as a drummer in a bagepipe band, so I have been exposed to a lot of it). This usually happens late in the evening (when the music's seeping through). The big tip-off for me that it was not real was when I put in earplugs and the music was at the same relative volume, still very faint but audible. I don't control it, can't guide it or manipulate it: its just there, like your roomate's CD player.

Sometimes I really wish I could write it down. I guess its all original anyhow, as far as I can tell. I guess I can retain trademark to my own halluciations.

I went to go and see my sister in the hospital today. It looks like she's getting the hospital runaround and the docs are afraid to admit that they're not sure what's going on. Or maybe they caused the complications and don't want to admit it. Anyhow, I hope she can take the trek to Mayo if it doesn't resolve soon. They're the people you want to talk to when no one else can figure it out, I find.

QVC Time

At about 8 pm tonight the pain magically drifted away. Whether temporary or permanent, I have no idea.

I have a feeling that it was the opiates finally reaching some sort of baseline level. I know it takes a while for the methadone to get into your liver. From there it is dispensed constantly to the rest of the body in a sort of internal IV drip (as I understand it). I hear that it itakes about 5 days for the 'done to stabilize, and it has been about 5 days.

Drugged up as I am on prescriptions, I feel fairly unsafe to drive and -- as two friends pointed out tonight -- I probably shouldn't be doing any online shopping anytime soon.

Regardless of the cause and duration, I am enjoying this pain-free oasis.

A Rough Day

Yesterday, Wednesday, was a tough day for a variety of reasons. I had chemo, but I was in rough shape before that.

It started out quite manageably, and I was able to make time to bang out a relatively chipper-sounding blog post. But shortly after that it all went downhill.

They sent me home from the hospital on Tuesday with handful of prescriptions, which turned into the largest Walgreens prescription bag I've ever seen, approaching the size of a grocery-store bag. Due to the difgestive-stopping-up nature of the opioids (methadone, Hydrocodone, Dilaudid) they have been trying to make sure that everything was working, down there. They gave me a prescription for Senna, which is a relatively neutral and subtle over-the-counter med. But it didn't stop there, not my a long shot. They also sent me home with Docusate Sodium, Milk of Magnesia, Miralax (which is made of Polyethylene Glycol, a cousin -- ironically -- to antifreeze) and suppositories. And I was to take all of them. I think that with this particular concoction I could have ingested a mixture of cheese and super glue and it would have broken the sound barrier on the way out.

So, things started moving. That was discomfort #1, which ties into discomfort #2. In days previous, I alwasy took a few prescriptions daily in addition to a handful of vitamins and other herbal formulas. On a normal day I take about 10-15 pills twice a day. But this has increased with the pain pills (and the pills I take to counteract the side-effects of the pain pills, and the pills that I take to contract the side-effects that *those* pills give me) to so many pills, unguents, powders and elixirs that Jen has created an excel spreadsheet to track them all.

So, I take a lot of pills, Which is, by itself, only annoying and time-consuming. But the chemo takes away my hunger and makes me nauseous, so I don't eat very often, or very much. Yesterday morning I had about 6 cubic inches of bread with my handful of pills and laxatives.

About an hour later I felt strung out: sweaty, nauseous, light-headed, weak. It all hit when my brother and I were arriving for breakfast before chemo. Before our food arrived, I was scouting out good placed to throw up outside if I needed to. This reminded me of something from my pilot training, where you're always searching for and noting emergency landing spots, just in case. Same thing: if you think you're gonna vom, best to plan your route. The bathroom in this particular joint is hard to get to and I wasn't sure if you needed a key. So I made an exploratory trip: no key needed. My inner dialogue went like this: Bathroom, no key needed. Good. Now, that's an option unless someone is in there, which I'll need to keep a close eye on. Otherwise, that bush outside would work well, but its right next to an outdoor table where a young couple is eating eggs....

And this is a place I frequent. I wouldn't want to be remembered as "the guy that puked on the patio".

I breathed deeply, sipped water and nibbled at my food -- balancing between throwing up because I was eating too fast, and throwing up because I didn't have enough in my stomach. Getting the food to go, I felt even worse: now afraid that I was just plain going to faint or pass out.

As this point its good to remember that I was also likely dehydrated because by digestive system had been turned into an expressway over the past 24 hours.

At the chemo clinic, I was too light headed to walk on my own. A wheelchair was found, and in the clinic they put me in one of the two infusion private rooms that they keep on hand for sick people THey're probably shielded from the very worst end of the cancer treatment folks, as those people do their chemo in their hospice bed.

Dr. Grampa recommended that I go off all of the prescription stool softeners and laxatives until things started moving again. A good idea, I thoght.

Today I feel similarly weak and woozy though not as bad. I think the Methadone is responsible for part of it. Today is also a day-after-chemo day, so its understandable that I'd feel poorly. I'm eating and drinking high fiber stuff and drinking plenty of water so here's hoping that there is a pain-free way to fight the opioids and their side effects.

Og, and I have learned that methadone makes me hallucinate music. More about that tomorrow.

Chemo Dog

People say to sick people, "Let me know if there's anything I can do," and I know that sometimes this is just something we're programmed to say to be nice, but sometimes people are actually looking for things to do. I've started thinking of a few things that I do honestly need help with, and will post them here and let people volunteer if they're so inclined. This avoids the awkwardness of giving someone something to do to help (who maybe didn't really *want* anything to do -- and certainly no-one *needs* to do anything, this is my life, after all). It is also genuinely beneficial to me. Plus people can do as little or as much as they want, and different things fall to different skillsets. This first item is something that I know nothing about, regardless of how good or bad I happen to be feeling.

Thing #1: How do I get my dog registered as a Comfort Dog?

When I was in the hospital this last week, the staff mentioned that dogs are only allowed in to visit if they're comfort animals. These are dogs that essentially just go from room to room getting petted by those who wish a visit. I know that Kaia would be amazing at this and would love it (as would nearly all Greyhounds.) I would also personally benefit as I'd get to see my own dog.

How does this work? Could I do this with Kaia? What are the steps?

Related thing #2: How do I get my dog registered as a Service Animal?

When I was at CONvergence, a local Science Fiction Convention, I happened to walk by the 'con HQ and overheard this conversation:

"She needs to have this dog here with her," The man explained, pointing at the scruffy dog in the woman's arms. She was dressed as a Star Trek bridge officer. "She has diabetes," He continued. "This is her diabetes dog."

I walked past and sadly did not hear the rest of the conversation.

I remarked out loud at the time (mostly to myself) "Diabetes dog? If she gets to have a diabetes dog, then I get to have a chemo dog."

Past the fact that I can't imagine exactly what service a diabetes dog could render (other than barking at people who try to give her sugar) I'd need to come up with a good, plausible reason why I could have Kaia with me as often as possible that the state (or whoever) would accept. I missed her terribly this week and she is very calming for me at a very stressful time. Is a dog that is psychologically comforting allowed? She gets protective when I'm feeling poorly, but she can't exactly call 911 for me. What (honest and applicable) reason could I use, if any?) DIes it need to be a physical reason? If so, what reason could we come up with? 

As a bonus, we know that Kaia's used to wearing a tabard, anyhow. (See actual pic of Kaia, walking out to a race -- with Photoshop Modifications, of course).

Headed Home

It's official: they're working on the release orders now, and my mom is coming to pick me up. I'm looking forward to a world where things don't beep constantlly. Tomorrow: chemo week 2.

Parole Board Hearing Imminent

I met with Dr. Bonzo, the Palliative Care Doc, this a.m. (I'll be working with her ongoing, so she gets a Name). She likes the progress and may even reduce the 'Done from 15mg every 8 hours to 10mg every 8. She gave her approval that I be paroled today from Abbot. Dr. Grampa, my Oncologist, will make the final call but I'm confident that he'll agree. Just waiting on a visit from him now. Meanwhile, the 'Done makes me very tired, so a nap is in order. Will eventually need a ride home, also!

Captivity, Day 6

Its hard to believe that I've been in here at Abbott since Friday trying to nail down a solution to the pain situation.

I was also realizing last night that the pain is only a small piece of the puzzle. I had almost forgotten that I'm in the middle of Chemo, with another treatment scheduled tomorrow. The back pain has been extreme and -- at times -- all consuming -- but as it improves I also need to remind myself that I'm getting farther and farther from my most recent chemo treatment. In this way, two things are simultaneously improving: energy following chemo and mood as pain lessens.

Having Jen, Ray and Steve over to my (thankfully, finally, private room) last night, I realized I was feeling pretty good. The pain was gone, but also my energy had bounced back nicely from the chemo.

With chemo treatments once a week, my blood cell counts wil be back close to normal by the 7th day, at which time I get another treatment and they'll knock me down again. Again and again. Which is just how it goes.

So, in all, I'm feeling pretty damn good today. The pain seems manageable and my energy is climbing back to normal. In a way, this week-of-pain has distracted me nicely from the chemo, to the extent that it had gotten lost in the shuffle. As I was feeling like I had more energy last night and feeling like I wasn't really ready for sleep at about 10 or even 11, I forgot to factor in that I was also feeling more energy as my cell counts bounced back as well.

I am hopeful that I will get out today. I have chemo scheduled tomorrow (wednesday) and I'd like to have a chance to have a fairly normal evening at home (see Jen and see my dog, etc.) before the next cycle begins.

The Methadone appears to be controlling the pain well enough. the pain is probably sitting at a 1 or a 2 now. I just took my 3rd every-8-hours dose of the 'Done, and I'm intentionally waiting an extra hour before taking the Dylotid (which I could have taken anytime after 4 am. I'm trying to be scientific and separate the effects of each, rather than just automatically popping both as often as I can if they're unnecessary.Plus, the Dylotid makes me nauseous, and the 'Done doesn't. they both make me tired, I'm learning.

With the pain now seeming managed, I'm going to lobby heavily for getting out of here today. Ultimately, this is up to the palliative care (pain) docs, and I'm not sure when they're going to stop by today. The chemo treatment that I'm scheduled for tomorrow is just across the street (literally) and there may even be a skyway or subway. Or, since this is the oncology floor they may even be able to do it right here in my own room. But I'd rather sleep in my own bed tonight and make the 5-minute drive back tomorrow.

p.s. cold, fresh tofu spring rolls for breakfast are way better than anything the hospital has on the menu. You may disagree, but you'd be wrong. I'm just sayin'.

Huh. Methadone? Who knew?

So far the Methadone (a surprisingly innocuous looking brown tablet designed as a heroine substitute but without the high) appears to be the Silver bullet. It's early yet, but I've passed on Dylotid twice now, as my pain is at a surprising 0. That's even with bad posture, sitting up in bed.

The nurse was just telling me that the M doesn't peak as severely as others painkillers can. And all IV painkillers can lower blood pressure (causing a bit of a crash): This is in pill or liquid form, eliminating that problem.

The Dylotid also causes me nausea, meaning that I need to pop *another* pill to kill that. Taking the Dylotid as seldom as possible means I take *two* fewer prescriptions, which is good.

Both the Methadone and the Dylotid are opioids, so they will stop up your GI system like a Boston subway line at rush hour. Precautionary measures must be taken!

painkillfail

the pain is back, rating about an 8.

A hour or so ago I met with the palliative care docs, the docs that specialize in pain.

The mega-doses of painkillers they've been using are having less and less effect. They're authorizing upping my Dylotid (not sure how high yet) and are replacing my phentanyl with methadone. This drug is (among other things) used by heroine addicts as a "safe" replacement. Hopefully this will give a clear picture of how powerful it is.

This ain't no way to live. I'm hoping with all of my might that the rest of my life will *not* be a balance between mind-numbing painkillers, and mind-numbing pain.

Meds

I just got done taking my meds at about 12:45am

Partially for the edification of any following along here, and also for my own record-keeping, here is my current med-roundup and pain management plan:

75mcg Fentanyl patch (72 hour). This (new dose and larger patch) takes up to 16 hours to start working, so it will come online at about 9:30 am Monday.

3, 2mg Dylaudid oral tablets, every 3 hours. Regardless if there is pain or not. This is to keep a base level in my system. This amount may be reduced whenthe Fentanyl is try online.

The Dylaudid causes drowsiness, nausea and (for me) itching, which i was reminded of by my body a few minutes later. I called the nurse back in, and to counteract the itching, oral benadryl and Ativan (qntinausea) were given. To counteract the nausea, either oral Ativ

NOTE --- at this point in the commentary I felt overwhelmingly that I was going to vomit. I spent an uncomfortable few minutes in the bathroom until the feeling receded.

In the past, I have taken the IV Ativan (antinausea) which works like a charm. But I/we are trying to work towards at-home solutions. Next time the meds are due, I will request that I fake the Ativan/antinausea pill maybe 1/2 hour beforehand.

It's a recipe that is taking a while to perfect, but I think it will be finalized by tomorrow.

A lot of this is being driven by me, though trial and error and by just listening to my body. I've had to insist on the the scheduled Dilaudid, as an example, and also pushed for the higher dosage of Fentanyl. If you state your case and give reasons for it, your docs should listen. It's my body, and I know it better than anyone else.

To sleep, perchance to have really odd dreams.

*** update: 5:20 am: with my 3:30 am dose I took Zofran (antinausea) 1/2 hour beforehand and It grea. No nausea! ***

Iocaine

Hospital roommates who can only (apparently) sleep with the television on and blaring make me wish for some Iocaine powder for their lime Jello. Or an ejection bed. Luckily I have some hearing loss and I have earplugs.

I am confused, do I quality?

Represent!