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Apr. 3, 2007  Maria and I just got back from an appointment with Dr. S, the Oncologist.  He seemed pleased with my progress to date since I wasn't accompanied by an oxygen tank and cannula.  Last time we met with him - about three weeks ago - we talked about how to "stabilize" the cancer since he couldn't (wouldn't) treat me in my then pusillanimous condition.  One option was a non-chemo-type "biological" treatment that works on the enzyme pathways that the cancer uses to spread.  However, as we talked about it and read more about possible side affects, we learned that in some Japanese studies there was a serious side affect - an interstitial lung problem, often leading to death within a few weeks.  Although not common, it occurred more often than one might want to risk.  Since I got the "BOOP" while on chemo, neither did he desire to go that route again.  Dr. S wanted to think about it/research it some more.

I then asked Dr. S. to look at the scar from the biopsy on my side that I had back in February.  It has been very tender and hurting a lot the last couple of weeks (recall that the PET scan lit up a spot on my flank and the subsequent biopsy confirmed that the cancer had spread through the blood).  Dr. S. said he was quite certain that "my old friend" (the cancer) was  back.  When we asked what to do about it, he said it might be possible to remove it surgically or we could radiate it, BUT, that he would prefer to leave it there, at least for now.  I'll explain why in a minute.

He said he has definitely ruled out using either the biologic approach mentioned above or the chemo I was on when I got the lung problem.  But, he said, we need to know where the cancer is if it's anywhere outside the two known places.  To do that he wants me to get another PET scan next Tuesday.  We know my lungs will light up the scan like a Las Vegas night as a result of the BOOP, so that part's not diagnostic, but it will show if it has moved in anywhere else, i.e., bone, liver, brain, etc.  He then listed about 4-5 different chemo treatments that are used for my particular cancer and said he's chosen one because it seems to have the least adverse side effects and is equally effective to the others.  It requires an infusion every 21 days which will work out great with our "vacation" schedule (Hawaii and Tofino, B.C.).  He might start it as early as next week so they gave me a Vitamin B-12 shot today so I will be ready.

Why leave the cancer on my flank there as long as possible?  It's the "canary in the mine" thing.  Dr. S. said that the presence of the tumor will allow us to evaluate the effectiveness (reaction of the tumor) to the chemo he's selected and if it's not working, to move on to another one.  Simple huh?  If it gets too painful, he said we will then have to deal with it.  I told him a little pain is a good character builder.

So, where's the good news you ask?  It's that I'm still here and that there is a treatment course that we are planning to embark on - I like to call it ... HOPE!  I said in one of my earlier postings that this stuff might get me eventually.  It likely will unless unless I get smushed by a garbage truck, drowned in a vat of molten chocolate,  or sink my boat on the high seas first (it could happen).  But as I said at that time, I have decided I will not die today ... or tomorrow for that matter.  Maria and I will continue to try to stay in the moment and to live, love, and enjoy whatever time we have left together to the fullest.  That includes planting trees, making plans, enjoying time with our family and friends, and maybe, just maybe, doing 3.7 seconds on that bull named Fu-Man-Chu.

Apr. 13, 2007  As John mentioned in the general update, the combination CT/PET scan showed some mixed information regarding both John's lung condition and what the cancer has been up to while John's been recovering from the lung condition. As for the lungs, while the last X-ray taken at the hospital looked pretty good, the CT scan showed a lot of "changes" in the lungs. In other words, he still had BOOP-like "stuff" going on. Today, we learned that the CT scan he had last Tuesday showed improvement  in the lungs, except for the expected scar tissue from the radiation treatments. Dr. S was pretty impressed by how well John is breathing and his returning muscle strength. In addition to this good news, we also learned that the original tumor is smaller yet than it was in January and that, while it still lights up a little bit with the contrast liquid (F-18 FDG), the uptake is much less than it was in January. Considering that John only had 3 treatments of the planned 24 for the last chemo, it's good to know that the original treatments are still impacting that first tumor.

We were disappointed to learn that there are three new spots showing up on the scan. They are all within the "chest wall" and all on the left side of John's body, which may explain some of the pain he's been experiencing in recent weeks. He has definitely been experiencing pain in the subcutaneous layer of the left flank, due to that tumor, which was biopsied in January, growing back. It's now "multilobulated" and about 4.5 cm at its greatest diameter. Dr. S decided that the pain has been interfering with John's life too much to just leave it there, and we now have other spots to look at in a future PET scan, so either the surgeon will remove it or it will be radiated, whichever best allows us to continue with our plans to go to Hawaii and Tofino. The doctor says they are equally effective options. In the meantime, Dr. S wanted to start chemo right away, with the hope that John won't develop some other random dangerous reaction to this one. If he tolerates the chemo well, John will have one more treatment the day before we take off for Hawaii and one before we leave for Tofino.

We suppose that this is what it's like to "manage" this disease: As Roseanne Roseannadana used to say, "It's always something!" Somehow, though the news wasn't as good as we might have hoped, it also wasn't nearly as bad as we had feared, and we feel that knot of unknowing beginning to unwind. The hardest part is always waiting for information, results of tests, etc. No matter how busy you make yourself, the fear of the unknown seems to want to hang around.

John alluded to the song, Live Like You Were Dying, last week because that's what we are doing, even though neither of us plans to check out any time soon! It's a good way to live, and one we know we should all be doing, whether we know we are sick or not. So, we are taking the trips we always wanted to, building the fire circle John always wanted, fishing for springers, changing doctor appointments to accommodate clam tides, putting our hands in the earth, watching the sun rise, spending as much time with our friends and family as they can stand, and holding each other close. Sometimes it feels surreal to be cramming in so much fun so fast, but that's just how the schedule has developed. There will probably be some time for a breather after the traveling.

Apr. 18, 2007  As you can tell from John's entry, he's feeling the effects of the recent chemo treatment. He hasn't felt really great since Monday, but yesterday he awoke with a wheezing in his chest and a bit out of breath. We knew this was a possible side effect of the Pemetrexed, but still wanted to be sure that it wasn't a sign of BOOP reemerging. Today, he had an X-ray which confirmed that his lungs are fine. It was a big load off both our minds. And Dr. S says the breathlessness is most likely caused by the chemo (I think that's what John was referring to when he mentioned "Maria's diagnosis.") because he is still able to inflate his lungs as much as he was last week and his O2 saturation has remained near 95%.

In other news, John had been in a lot of pain from the tumor on his side and had taken some Oxycodone on Monday night to alleviate it, making him pretty groggy and generally not feeling well. So, he decided to stop taking pain meds for awhile and see what transpired. He thought, too, that the tumor on his side felt better. When I looked at it on Tuesday, it was indeed less swollen and much less tender to the touch. Hmmm, we wondered, could it possibly be that the chemo is already working??!! Neither of us was quite brave enough to stake much excitement on the hope at that point, but today (Wednesday) it's even smaller and flatter. Dr. S confirms that it's probably the chemo doing its work! YES!! That means it's also working on the new spots as well as the original tumor.

Dr. S thinks the pain John has had in his chest and back for the past couple of days is the chemo causing "radiation recall" in the scarred areas of his chest where he's had radiation before. Apparently, chemo can cause the body to experience pain in areas previously treated. So, the original tumor is probably hurting again as well. All in all, the doctor seemed very pleased that the chemo was apparently working and relieved that there is no evidence of a BOOP reaction going on in John's lungs. Tomorrow, we see the pulmonologist who saved John's life in ICU, Dr. F, and will undoubtedly get more information about the current state of his lungs, as well as the go-ahead to reduce the Prednisone, I hope! I think a lot of John's general malaise is caused by the massive amounts of this steroid he's had to endure for so long.

John is too tired and chemo-headed to express the relief we both feel after today. He'll start receiving radiation tomorrow on the side tumor, as well as the one on his 12th rib. But, as always, the treatments make you feel icky even as they are trying to help you get well. We are hopeful that Hawaii will still be possible and even, maybe, clamming this Saturday. All will depend on John's energy level and how he feels. He didn't want to be in Hawaii worrying about symptoms, so if we get most of the mysteries solved before we go, he'll be able to enjoy the trip. Both Dr. S and Dr. H (the Radiation Oncologist) are happy we're planning this trip and are bending over backward to schedule treatments around our travel plans. They are as amazed as everyone else at John's positive attitude, courage, and toughness. I am so proud of him.

Apr. 22, 2007 Everyone’s best guesstimate at this point seems to be that I have (or had?) Myocarditis (inflammation of the heart).  I don’t know that anyone knows how exactly that you get it - it just kind of happens. The low oxygen stats and lung wheeze are still anybody’s guess and could be caused by a number of things, including the beta blockers being given to me to lower my heart rate.  Dr.  L (one of the oncologists who works with Dr. S) was just here and spent a lot of time going over the possible causes of my problems - but the bottom line is still that we just don’t know.   She is great about trying to explain everything though.

If it indeed is myocarditis that was causing the elevated enzyme (Troponin I) level, that enzyme should come down now that the chest pain is gone. Right now, it’s elevated and has continued to go north with every test, indicating some kind of perturbation on the heart. Usually elevated enzymes indicate a heart attack but might also be the result of the myocarditis.  I suspect it’s one of the main reasons that they wont let me go home yet.

Apr. 30, 2007  Two pictures of my left arm with "Petechial hemorrhages" which are small blood blisters that occur almost spontaneously from capillary bleeding.  In this case, the cause was likely the blood thinners (Coumadin and Lovenox) being administered to prevent blood clots, in combination with large doses of Ibuprofin (anti-inflammatory) as treatment for Myocarditis (an inflammation of the heart that sometimes is manifest when immunity is compromised due to chemotherapy).  The Ibuprofin was discontinued.  I have some on the right arm and left leg as well but not as many as seen below.  They are neither painful nor do they itch.  The challenge will likely now be to keep these puppies from breaking and getting infected.