8-week follow-up scans and doc visit: brace yourselves, here it comes…

Dear Friends and Family-

This is difficult for me to write, so bear with me. I had my 8-week follow-up visit with Dr. Leal yesterday. The news was not good. It appears that the cancer has started growing again. Yes, after all that treatment this spring. I have not been feeling my usual self this past two months, which I attributed to continued side-effects of the chemo. While some of that may have been true, ultimately the cancer is responsible for the majority of my symptoms and general sense of low-energy and less-than-well-being. The major tumor in my upper chest is again pressing on major veins and arteries, as well as whatever nerve is making me start to go hoarse again. One of the lobes of my right lung is now blocked off and the rest are partially occluded, explaining my shortness of breath.

Dr. Leal mentioned a third chemo drug that we could try, although it has a very low response rate but with all the usual side-effects. I am not too keen on going this route again anytime soon, given how I have been feeling this summer. My gut tells me that it would be trading any chance of feeling OK for the next few months and beyond, for a 10% chance that it would succeed and buy me a little more time. It would also incur a much greater likelihood of illness and hospitalization than before, because I am that much more worn down after all I’ve been through than I was even 6 months ago.

She said she would ask the Radiation people if they think I am eligible for any more of that treatment, although my sense is that the probability of their agreeing is low. There was another, very aggressive chemo drug combo, but I turned out not to be eligible for that, so it’s out.

That led her to mention the “other” option: hospice. This is essentially where I forego any further treatment designed to fight back the cancer, like chemo and radiation, and opt to pursue palliative care only. This is designed to keep me comfortable, treat my symptoms as they arise, and make sure that I stay as much in control of my remaining time as possible. When cancer patients get sick enough from chemo, they can suffer from all kinds of infections and illnesses, and very often end up in and out of the hospital a lot. This also does not appeal to me. Hospice is designed to keep the patient at home for as long as medically possible.

Unfortunately, part of me hears “hospice” and thinks “giving up”. I have a strong will to live, and I am still very much in the mindset of “what do we do next?” It’s the hardest thing to try to change that mode of thinking. I so very much want there to be more good options to try. I can be stoic and put up with chemo and its effects, as long as there’s a decent chance for real benefit from doing it. That’s what we guys do – soldier on through! That’s what I’ve been doing for the last year-and-a-half. I’ve gotten fairly good at it. However, it’s a huge change, going from “Forward, March!” to “This Far and No Further”. Deciding not to look over the next hill is rough.

Now I must shift my thinking to management. Time management. Symptom management. Expectation management. I respect the philosophy and goals of the hospice movement a great deal. I agree with all of it in an abstract, intellectual way. But now that it’s MY neck on the line, it’s quite hard to embrace it personally, for myself. To be honest, I have spent the last couple of months feeling pretty poopy, and knowing that yet another round of chemo anytime soon would be a genuine hardship as opposed to simply an annoyance. There have been times when I’ve contemplated stopping treatment in favor of attempting to feel better. Moreover, there have been times that I have contemplated pursuing yet more treatment, and upon reaping a near-certain harvest of horrible side-effects and illness, well imagining myself to be better off… well, you get the point.

I can’t really find a nice, neat bow to tie this post up, so I’ll just end it here. Because of my hoarseness, it’s difficult to talk for any length of time, so I’d prefer emails to phone calls if possible.

-Gordon

Follow-up scan and meeting…

I had my follow-up CT scan yesterday and my meeting with Dr. Leal today, as this round of chemo finally winds down.  Once again, all the scans showed 100% stable disease, with no advancement of existing tumors and no new activity anywhere.  Certainly good news!  It’s been a bit of a rough ride for the past several weeks, due to the two extra cycles of chemo I received and the cumulative nature of the side-effects, but I still believe it was worth it.  Now I can look forward to a long period of recuperation, sorely needed.

Dr. Leal briefly discussed some new studies I may be able to participate in down the road, but didn’t give me any real new information so I won’t bother reiterating them as they have been mentioned in previous posts.  I’ll have another scan done in 8 weeks, and then, presumably, we will discuss next steps.

So, no shocking revelations this time around, just confirmation of what is already known, and the reassurance of continuing clear scans.  I’ll be ignoring this blog for quite awhile.  However, if anyone has specific questions you can ask me via the comments section here, as I will get a notification when a comment is left.  My electronic door is always open!

That’s it for now – will report again in 8 weeks.

6th and final cycle completed. Vacation time!

Went in for my 6th and final cycle of chemo yesterday.  I’m happy to report that it went fairly without a hitch.  My blood work was hampered a bit by a less-than-perfect IV line, but they were able to get what they needed in the end.  The infusion went pretty smoothly, and I again chose the sleep-gambit to pass the time.  Very effective.  I find the whole process rather like flying across country with a couple of layovers.  Lots of time spent waiting for activity, a few delays to make things go slow, and finally I am released to my destination.  And a lot of staring at walls, waiting for things to happen.

My numbers looked relatively the same as they have been recently – a bit low on the red and white blood counts, but otherwise nothing of any concern.  There will be the followup scan and visit with Dr. Leal in three weeks, and then I’ll get a much-needed break for a good long while.  They say the effects of chemo are cumulative, and I can really feel that this time around.  My veins will need the break to recover, and today I am feeling an overall sense of not quite being 100% myself.  It’ll pass as the weeks wear on, I’m sure, but I’m looking forward to a long rest from it all.

Dr. Leal mentioned the next best option for future treatment was a new form of immunotherapy, where the immune system is “trained” to seek and destroy cancer cells.  She did say there were no current studies of this going on at UW Health, but that she anticipates something becoming available in the near future as this technique is being tried on more and various types of cancers.  She also mentioned that, because this would be considered not to be “standard of care,” that there might be a cost to it.  I figure I’ll cross that bridge when it comes, but I am very open to something that could hold a lot of promise.

Meanwhile, it’s time for a much-needed rest, and to enjoy the Spring and Summer for all they’re worth!  Our fab new deck is open at last, and we will be lazing around on it at every opportunity.  The yard is budding out, and I plan to let it mostly go au naturel this year, save for mowing and maybe a little weed control.  I’ll report the results of the coming scan and meeting, but for now, I’ll see y’all in the funny papers!

Cycle 5 and after…

I’ll try to keep this post brief and to-the-point, as my recent posts have been a bit long-winded.

Went in last Wednesday for my fifth chemo cycle.  Things did not run quite as smoothly as usual this time, for some reason.  The chemo infusion center is undergoing some remodeling, so things were moved around and they were a bit backed up due to loss of some of their old space.  However, my treatment was only delayed by about an hour.  The lab staff had a hell of a time placing my IV line and I ended up, after three tries, with a nasty goose-egg on my left arm, which is now aging into a rather lurid blue bruise.  Bleah.

I ended up snoozing through most of my infusion, since Jeanette stayed home to nurse some post-trip fatigue from our trip up to Bayfield the previous weekend (which was super-fun, BTW!) and found that sleep is the best time-killer there is.  The afternoon ended up going by pretty quickly since I spent 80% of it in dream-land!

To top things off, my radiator blew up on the drive home.  I ended up limping the car back to our driveway by driving it a few blocks at a time and then parking and shutting it off for 10 minutes to cool down a bit before trying again.  I ended up spending a few hours that evening replacing the dang thing.  All is well now, but it was definitely NOT on my list of post-chemo recuperation activities!

I’m also finding that the heavy-duty anti-emetic they give me for the first three post-chemo days has some rather strongly unpleasant side-effects.  I’m past that for now, but still not quite 100%.  These first few post-treatment days can be the worst, naturally, so I’m trying to be smart and lay a bit low.  Some good news: my insurance is finally paying for my 7-days of Neupogen shots at home, so I took them home with me and won’t have to go to the hospital to have them administered.  That’s at least a small relief.

That’s about it for now.  It’s all the usual temp-taking and monitoring for the next couple of weeks, and then back in for the sixth and final cycle.  Will report more as warranted.

Final exam day… and some surprises.

So, today was my follow-up visit with Dr. Leal, after four cycles of chemo that started way back in January. I went in expecting the usual mixed bag of scan results, and maybe some heavy discussion of my future. However, I was very happily surprised to hear that my scans showed absolutely no advancement of any of my tumors, and no new activity anywhere. I don’t need to tell you what good news that is, and how relieved I was to hear it. My blood-work showed totally normal kidney and liver function, and a noticeable recovery of my blood counts, indicating essentially healthy marrow that is able to bounce back quickly.

Additionally, Dr. Leal thought it was very likely that my coughing, which has been returning and kinda bugging me lately, is from residual effects of the radiation I had last summer, and not from cancer activity.

The second surprise was that she was encouraged enough by these results to go ahead with two more cycles of chemo, which would complete a full 6 cycles. I was given to understand that, in the absence of a significant reduction in tumor size, she was not likely to want to risk further health impacts by continuing chemo after four cycles. I was very much expecting not to continue. But she was pleased enough with the lack of advancement since my last scan 7 weeks ago, plus the fact that I tolerate chemo well, to want to go ahead after all.

I take this as good news. While I don’t relish the two extra doses and all that goes with them, I think just the fact that she wants to proceed means she is seeing enough benefit from what I’ve had so far that more stability, and maybe even some reduction, could be gained by going on. I’m hopeful, and intrigued to see if this will pan out.

This means another 6 weeks of the old routine starting next week, including those daily shots, but I’m ready to see if we can actually gain some ground here for once.

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I also enrolled in another study. This one is an NIH study seeking to develop a blood test for cancer detection. This would make it much easier to detect cancer early, and would obviate the need for invasive procedures to obtain biopsy samples. I basically don’t have to do anything additional to participate, so it was an easy call. I hope they are successful, and that a lot of people down the line can be helped by this.

All in all, a much better day than I had anticipated, full of surprises, and full of hope for the future. Can’t ask for much more than that.

Followup to my recent round of chemo tomorrow and Wednesday.

So, tomorrow I go in for labs and a CT scan, as followup to my recent round of chemo.  Wednesday is my followup visit with Dr. Leal.  I expect the usual mixed bag of good and indifferent results, as that seems to be the usual pattern.  The scan will probably show some improvement in some of my tumors, but probably not as great as the docs would like to see.  For whatever reason, and despite their repeated statements that small-cell lung cancer is “very responsive” to chemo, mine doesn’t seem to want to react to it much, at least not as much as it did to radiation last Fall.

As I have mentioned a few times in the past few months, I can tell from how I feel overall that this round has, in fact helped me to feel better, and has ameliorated or altogether gotten rid of the symptoms I was having back in December.  I also know that, for whatever reason, the effects of chemo continue to manifest over the months following treatment, so there’s the strong possibility that any scan a couple of months down the road may show further improvement, as happened after the radiation.  Glass half-full, and all that.  However, that’s pie-in-the-sky right now.

They are also discussing giving me a blood transfusion in order to help compensate for low red-cell and hemoglobin counts.  Since these elements are extremely important in transporting oxygen in the bloodstream, such a boost would help me feel more energetic and vital, and would be felt immediately.  At first, I heard the term “blood transfusion” and was a bit taken aback, picturing being hooked up to a huge bag of someone else’s blood at one end, and a siphon hose or something at the other!  Not true – it’s really just an infusion of hemoglobin derived from donated blood (thank you, anonymous!) to boost my low levels until my body has recovered sufficiently from chemo to be able to manufacture its own supply better.

After talking to some knowledgeable people, I feel more confident in it, and will be ready to give the go-ahead.  And I’ll look forward to the boost, as my fatigue has been somewhat bothersome the last couple of months.

That’s the big news today – will report on the actual meeting Wednesday or so, when everything is more concrete.

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I’m sure by now that everyone has seen or heard about the big cancer breakthrough reported on 60 Minutes last week.  Researchers at Duke University have had amazing success with a terrible form of brain cancer, called glioblastoma, by injecting a modified form of the Polio virus directly into brain tumors.  Apparently, the virus triggers the body’s immune system to start attacking the tumor, and only the tumor.  After several months, patients were found to have almost no tumor remaining, which is near-miraculous for a cancer that usually kills in a matter of months.  Of course, there were setbacks, and other patients did not respond well to the treatment, but the greater result is quite hopeful.

As I watched the clip, I felt two things at once: first was gratitude for being here, in this time and place, to see, and possibly benefit, from such an incredible breakthrough.  I am glad for the study patients who have been given a second chance by this therapy, and I really hope it all pans out and becomes a truly new and effective treatment for a sneaky and pernicious disease.

The second was a big shock of caution.  This, too, is pie-in-the-sky at this point.  It’s totally legit, unlike all the snake-oil “cures” well-meaning friends have cornered me about over the months.  But it’s very early days, and it will be many months or years before it becomes widely available, if it even does at all.  But I felt that rush of “maybe I can do that” for a moment before I stopped myself.

I can now, truly, understand the lure of snake-oil.  I have watched my dear wife deal with this kind of thing for years.  I have understood it intellectually, and brought all my natural skepticism to such fantasies.  But it was never truly personal for me as it is now.  She is incredibly strong and has taught me so very much about maintaining hope and love of life in the face of being dealt a really bad hand.  And she has felt the lure, and has been stung by disappointment, and has had to get up and continue on despite it all.  I can only hope to emulate that strength, and I am, most of all, grateful for her example.

In the end, I’m reminded that my main job is to hang around long enough that something like this might come along and change things for me.  But until then, my most valuable asset is confidence.  Confidence in my doctors and nurses, in my treatment; in the people into whose hands I’ve literally placed my life.  That confidence allows me to stay positive, and thus to enjoy my life right now, which is all I really have.  It was good for me to see this clip, and even to have the mixed feelings I had about it.  I felt rather uncomfortable and a bit disturbed by it for a couple of days, but it helped me to clarify what’s important.  I can’t waste energy waiting around for a miracle-cure, and I can’t waste time looking for a magic pill.  Living now is what I need to do.  If and when such a thing becomes real, that will be a great day.  But until then, it’s Spring, the world is bright with sunshine, and I’m heading out into it.

Cycle Four begins.

Went in for my fourth chemo treatment yesterday.  This time there was no drama, they got me in pretty dang fast, and everything went smoothly and surprisingly quickly.  Even the chemo nurse was a fast talker!  Unfortunately for you, my dear reader, that means no stories about Vern or Cooter, and no new denizens to add to the fun.  Just the usual efficient, friendly, attentive ministrations of the Carbone staff.

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Dr. Leal was in a chirpy, upbeat mood.  I think the sudden vast improvement in the local weather has everyone feeling good this week.  I am certainly feeling it!  My numbers looked pretty good, due to the 25% dose reduction initiated last cycle.  My red blood cell counts are a tad low, but not dangerously so, so they consider me slightly anemic.  That goes a long way toward explaining my relative lack of energy and tendency to get winded after, say, marching a couple of laundry loads up the stairs and changing the bedding.  There still may be a cancer component to that symptom, but anemia would account for a lot of it too.  This should resolve itself slowly as I recover from this treatment and my body can begin to produce blood cells more normally again.

 

I will be driving in yet again for my 7 Neupogen shots beginning next week.  I actually don’t mind doing so, as it kind of breaks up the day, and I use it as a chance to do errands and stop for little snacks along the way.  Day 10 will bring a CBC test, which will hopefully show decent neutrophil levels and give me the information I need to not freak out about getting a fever so much.  My temp tends to rise a bit in the evening and then begin to drop back again when it gets late.  I watch it like a hawk starting about Day 8 and all through that weekend, which is when my vulnerability to infections is highest.  It is apparently a common effect of chemo, and causes this day-10 dip in lots of people’s immune systems.

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After that, I’ll have the final CT scan in four weeks instead of the usual three, as Dr. Leal will be out of town.  Fine by me; it’ll be a longer break from appointments, and will give the meds that much longer to do whatever they’re gonna.  I predict the results will be the usual mixed bag of good/not so good.  The likelyhood is that the scan will show minor improvements and, hopefully, nothing new.  But, as my study coordinator Martha said, the way I feel is the primary indicator, and I maintain that all this chemo HAS helped me noticeably and significantly.  That’s my story and I’m sticking to it.

 

After all this is concluded, I guess I’ll get another lengthy break so my body can recover.  Time to live life, enjoy Spring and Summer, and work on going up a pant size again!  At some point, I think they’ll want another scan to see where things are a few month out.  I don’t know what further options there are – perhaps more chemo at some point.  I tend to tolerate it well enough, and I think it has been helpful.  Perhaps more radiation if they think I can tolerate the scarring I experienced last time.  I know they are concerned about the cumulative effects of all this, so I can’t say how eager they would be to inflict it on me again.

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The concept of head/brain irradiation is still out there as a preventative measure to counter small-cell cancer’s tendency to spread up to the brain.  That prospect is still daunting to me, as it carries potential memory and cognitive effects with it. All my head MRIs since last Spring have come out clean, meaning that they have been unable to detect any cancer there.  That doesn’t necessarily mean there IS no cancer lurking, just that it hasn’t reached a detectable level.  Yet.  So they’ve back-burnered that issue in favor of the more pressing (literally) issue of the mass around my heart and wind pipe area.  That and general symptom amelioration have been the primary goals so far.

 

I have to confess, perhaps for the first time here, that I have already experienced moments of inexplicable memory glitches.  They have been rare so far, and I mostly notice them while playing shows.  I come to a song or a section of a song that I know I know well, and the music I need is just not there at that moment.  It’s weird and disconcerting, to say the least.  I don’t think it’s a sleep issue, because I’ve always been a hopeless night-owl and am used to functioning on 6-7 hours of sleep.  It could be simple aging, although, as far as I know, memory and cognition have never been issues in our family.  It’s pretty mild as these things go, but I note it for posterity.  Probably, it’s just a weird glitch.  Dunno, we’ll have to wait and see.

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For now, I’m happy to be concluding this round of chemo.  All in all, I have tolerated it quite well, it has helped me in many noticeable ways, and has been altogether worth the trouble.  I’m very much looking forward to enjoying 2015 in a way I was not quite able to do last year.  I still maintain a positive outlook each day, and I am so very thankful for my generous and loving family, my awesome group of friends, and mostly my wife, without whom this whole story would be very different, and not for the better.  I don’t, and can’t, know where the road I’m on is heading.  That information is unavailable to the mortal man.  But the scenery around me is beautiful, the air smells good in my nostrils, and the path is leading me over a lovely hilltop, past which I’m still eager to see what lies beyond.

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