Wednesday, December 06, 2006

12.06.06, From Zion, Condition, Updates

[I just sit back here and watch what is happening on this post, this post to cover my ass for all the days I've missed, the days of distraction, trying to cover for pain and other things. Thanks to Kim is all.
]

"Travelogue and Updates"

Tuesday, 28 November 2006

I asked Scott if I could do this blog as an opportunity to share some thoughts. Some of this is indeed a travelogue, on our recent trip to Salt Lake City.
Some thoughts on my past two months in Seattle and learning what it means to live with cancer. Finally, an update on the situation, Scott’s condition, that sits so heavily on everyone’s mind and heart. Perhaps this will be more than some of you are prepared for, and surely not the news you’d prefer to hear, but here I go . . .

There are moments in everyone’s life that for one reason or another stay cemented forever as one of Life’s Defining Moments. Watching a son say goodbye to his mother, both people thinking that perhaps it will be the last time. If it were simply that, it’d be sad but not very unique of a situation. But, the mother is in the Intensive Care Unit at the hospital and the son is visiting her from out of town. The son is 8 months into a fight with Stage IV pancreatic cancer, a disease with a mere 20% survival at one year. It’s a race, for life or death as the case may be – will the elderly mother outlive her son in his fight with cancer, become one of the 80% who do not make it, within the next four months time? Or, will the son beat the odds only to watch his mother succumb to old-age disease, tired body parts and systems slowly failing in an escalating cascade? And what of the family? Trapped in the middle, watching old and young alike struggling as disaster and tragedy lurk around every corner. This is of course all happening to a family that has already experienced another tragedy, another senseless death barely a year ago.

Unfortunately, this does sum up a big part of what I took away from the trip we made to Salt Lake City for Thanksgiving, to visit the Swaner Clan. The trip coincided with his mom being in the hospital due to a yet undiagnosed cardiopulmonary disorder. So, a tough way to spend the holiday, between trying to manage the holiday frenzy and juggling hospital visits to see Scott’s mom, as well as Scott’s own ever increasing issues with cancer.

I hadn’t met most of the family before, and didn’t quite know what to expect even as I had gotten the basic who’s who from Scott. Many interesting observations on human psychology and coping mechanisms, family dynamics and relational roles. I’ll just leave that one there =) Everyone I met was very nice, and I was touched with how involved everyone seemed to be in all the sickness, and helping out wherever they could. I still remember how draining the daily trips to the hospital can be, coupled with the feeling of helplessness and the constant waiting for news, any news from any doctor that might bring the situation closer to resolution. Big thanks to everyone for your graciousness and hospitality.

Shifting gears now to Scott, and how he’s been doing. I’m sure you’ve all sensed from the diminished frequency of blogs that things have been getting tougher as more time passes. If you’ve communicated with him recently indeed his thoughts are darker as the quality of his days increasingly fluctuates towards bad. It’s hard to deny that the clock is ticking louder, if not also faster. Idealistically, every day starts with the hope of being better than the last, but too often these days precisely the opposite seems to happen. It’s rough to start a new day when the night just kicked your ass. The cancer seems to be actively spreading, day by day despite the rage and fight against. It moves faster than we do, faster than we seem capable of adjusting and adapting to. There is no such thing as “managing” the disease, only a weak attempt at not getting steamrolled by it. It seems to manage Scott, dictates what he can and cannot do, what he can or cannot enjoy even. I can launch a complaint, scream that it’s not fair, but what’s the use?

The synopsis is that things have been pretty rough. He spends a lot of time just trying to get the pain under control, which becomes a physically draining task. Most days, he has a tough time even getting started in the morning as his mind seems foggy and slow. The days start with a big dose of pain meds, at whatever hour between 5 and 7 am that the pain becomes unbearable, then lie back down and wait for the meds to kick in and try to catch up on some sleep that didn’t happen the night before. Late morning, try to wake up for real and start some semblance of a day which might include some phone calls, some email, or mostly lying down or sitting still and reading if he still doesn’t feel too great. Try to push down some food in order to take some meds, drink some glycojuice. By the time I get home from work between 5 and 6, often the pain has returned in some (usually pretty serious) capacity. All this to mean, all but a couple hours of each day are pretty much stolen from him, from us, by this loathsome disease. Thus, the challenge becomes: can we make the best of that brief time each day. I won’t deny that it can be overwhelming.

Additionally, Scott’s been experiencing shortness of breath for the past several weeks. Initially, this was attributed to his diminished red cell counts (anemia), as was his general lack of energy and tiredness. These are all very common chemo side effects, and thus not of particular concern. He’s already on a biweekly drug (Darbo) to help manage the anemia. His breathing got acutely worse on the Saturday night/Sunday morning after Thanksgiving while we were in Salt Lake. Bad enough that we paged the doctor on-call in Seattle, to ask what we should do. She actually suggested a range of possibilities, from anxiety and stress on the mild end, to a pulmonary embolism on the severe end as explanations for this sudden change. Her recommendation was to get a chest scan as soon as possible.

Monday morning, back in Seattle we went straight from the airport to the Cancer Care Alliance for what should have been a regularly scheduled chemo appointment. We relayed to the nurse what had happened over the weekend, and she arranged for the CT scan that the on-call doctor had recommended. A quick check of his blood oxygen level put him at 92%, which was not a very good sign as normally it should be closer 97%. Five brutally long hours later, the CT scan showed a pulmonary embolism. Scott was told that the decision to go ahead and do chemo that day anyhow or postpone was his. After all that had happened with not getting any sleep for two nights, waking up early to catch a flight, then all the waiting around at the hospital, he could barely put together a coherent sentence. I tried to get him to eat some soup, and he kept falling asleep with the spoon mid-way to his mouth. Not getting chemo was probably a good idea.

On the pulmonary embolism – it’s essentially a blockage of an artery in the lungs by fat, air, clumped tumor cells, or a blood clot. They’re not sure what caused it, but apparently cancer patients are at an increased risk for developing them due to changes in the clotting mechanism of the body and/or as the tumor spreads. There really isn’t any quick treatment to get rid of the clot, but they gave him an inject-able blood thinner called Lovenox to help dissolve the clot so that his body can slowly resorb it over the next several months. This means he won’t get better very quickly but he shouldn’t get any worse either. They arranged to get oxygen delivered to the apartment that afternoon, to be used ‘as needed’ and so home we went.

I must say that this particular piece of news was difficult to digest. On the one hand, it’s pretty bad news. But it’s uncertain how bad it is, or if something else will come along and be even worse? For now, it’s manageable with the oxygen at home and it’s slowly being treated with the anti-coagulant (blood thinner). In terms of quality of life, it does make it harder but it still doesn’t beat out the pain as the biggest detriment to this factor. It just means this wretched disease is only getting stronger as it takes more away from him . . .

Thursday, 30 November 2006

Fucking cancer. I can’t keep up. In the day and a half since I had started this post, things have changed yet again. It’s progressed, or at least we’re more aware of the progress now than we were two days ago. To be frank, it’s moving fast . . .

I don’t have the complete details as I wasn’t present for today’s appointment, another restaging, but I will relay the details best I can. There has been a significant change in the CA19-9 cancer marker number. This is the number that started approx 12,000 when Scott was first diagnosed. At it’s best, we saw a drop to the 5,000 range after the first several rounds of chemo in May/early June. However, by the second restaging mid-July when we learned that the chemo was losing it’s effectiveness the number started to slowly but steadily rise again . . . 8,000; 9,000; 12,000. We’ve been trying to play catch up ever since. The most recent numbers have seen a much more accelerated increase. I saw a number from November 13th at right under 30,000. Today, we learned that his most recent test (Nov 27th) came back at 41,000.

An update on the pulmonary embolus, which turns out to be emboli. Two of them, one on each lung. Luckily, neither of which are too close to the heart (fear of it breaking off and causing a heart attack). Tumors, and sizes thereof, were not really discussed today as this restaging didn’t involve a pre-restage CT scan.

A significant portion of today’s discussion with Dr. Whiting centered on management of the pain that has been ever increasing, and overall quality of life issues. And yes, end of life issues. The decision to continue with chemo or not was posed, as it’s become evident that there are diminishing returns to balance with the side effects of chemo that have been intermittently manageable, or somewhat heinous as was the case with the acneiform rash from Tarceva.

Some new meds for pain management were prescribed: a fentanyl patch, Dilaudid, and another one that I can’t recall the name of. The thought was that Scott has been seriously under-medicated for pain for a while now, and the hope is to try to get it under control. We keep getting told that he shouldn’t be suffering as much as he is, and maybe this will be a positive change. Although, it is scary that they’re bringing out the big guns on this one, so to speak. As a drug, fentanyl has an analgesic potency of about 80 times that of morphine. The patch is meant to offer a slow but steady dose of this compound continuously. Dilaudid (aka hydromorphone) is one of the most potent narcotics they can prescribe. He’ll give these new drugs a whirl as soon as the prescriptions actually get filled.

I lack Scott’s eloquence and grace with prose, and thus apologize if my delivery is too blunt or harsh. Scott and I have had a few conversations on what to tell people, the friends and family that are concerned for him and anxiously await any updates, any news at all. As difficult as the news is to hear, it has been exponentially harder to deliver and I wanted to help him out on this one. I hope this allows everyone some time to think about and reflect on the situation, what has been happening and what might be happening sooner than we’d all like. Difficult times lie ahead, and your continued support and encouragement do not go unnoticed nor gratefully received.

6 comments:

Anonymous said...

thank you, Kim for the updates. i was getting very anxious as number of days without post increased. I felt so sick as I read your posts over and over again. I really feel inadequate of any words but please tell Scott that I am... that I am still thinking about him and wishing, though may be in vain, for his pain to ease away a bit. Please tell him that I, that I think about him everyday and wishing, wishing the best for him. At the risk of sounding like a broken record, thank you again for your sensitivity and caring. At a time like this, I wish I had a religion so I could at least say I will pray for him but as a nonbeliever, I can only read your posts and think hard on how I can help to ease his pain. But I'm pretty slow when it comes to Scott so please tell him to tell me if there's anything I can do to help. Please tell him that I love him.

Anonymous said...

Please make it through Scott. I'm praying for you. A lot of us are.

-Mickey

spacely said...

Thank you so very much for the update on scott. He would want to try and talk on the phone and that was too exhausting for him. Thank you also for the wonderful person you are kim, to be there for my baby brother. Spot tricia remember who loves you....me

Anonymous said...

*Thank you* Kim, for the painful update. I miss Scott's "voice," but you are the next best thing. So glad that you are there for our friend.

Anonymous said...

thank you for updating - i wish it was better news; scott, sorry to hear about your mom - i wish both of you well...

tossing salads said...

*sigh* :( thank you kim. love and the best vibes i have coming to seattle.