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?