Final chapter

This may be the final entry in this blog. As most followers know, Diane died Thursday, September 10 at 10:58pm, almost four years from the cancer diagnosis [October 11, 2011] that was to define the last years of her life.

She died peacefully, at home, surrounded by family and the excellent care of Hospice staff. Following the end, she was dressed in her best “Diane outfit”, complete with a head scarf, nails painted and makeup applied. She was allowed to rest in peace through the night with me sleeping by here side as before. I slept soundly knowing that Diane was at peace and would never have to endure a needle “stick” again. She had fought a good fight and was, after all is said and done, on the road again.

The final hours were particularly hard for me as the natural process of dying includes involuntary muscle movements which resemble “normal” movements and it was impossible to know what was going on inside the brain because eye and voice control were shutdown. One particular motion I remember was the moving of her right hand, with the 1^st finger extended, slowly from her side to her nose and then back to her side. This was repeated twice, with a few minutes of rest in between, and I can not help but imagine this as a farewell salute. At one point, Michael, who, along with family, was in route from home, was summoned by phone and when the phone set was placed next to Diane's ear and Michael spoke, there was a noticeable change in Diane's breathing accompanied by a facial muscle tick, followed by a return to the relaxed state when Michael's voice stopped.

The exact cause of her death is not known, but I suspect it was liver failure caused by the advancing cancer. But it could just as well have been the cumulative effects of taking one “poison” after another. Even a strong Irish washer woman's body can only withstand so much. Five weeks before the end, Diane had taken a “chemo holiday” with the hope that a chemo break would allow her body a chance at rebuilding. Although the diagnostic test were showing a positive result from the chemo treatment, the side effects had continually decreased the quality of life to a point that further chemo would likely have ended her life even sooner. So the idea was that a three week break from the chemo would give her body a chance to regain some strength before starting a new round. Unfortunately, Diane's body was not able to recover, and at the three week mark, blood tests indicated liver function was severely compromised and tumor markers were rising indicating the cancer was on the advance. The oncologist's opinion was that additional chemo might slow the cancer attack, but would certainly further diminish the general quality of the body. The following week, additional blood tests showed a further decrease in liver function and increase in cancer growth. Basically, western medicine had nothing more to offer. By this time, around the 3^rd of September, Diane's body was very weak and one could see that various parts of the nervous and muscular system were failing. On Saturday, two days following what was to be the last oncology visit, with the help of David and Maureen, I took Diane to see a Tibetan Healer in San Diego. He confirmed that her body was shutting down and prescribed several herbs to ease the process. The notion of seeking out other alternative healers or workshops and practices no longer seemed viable as Diane's strength and ability to focus was nearly gone.

I believe that Diane's rapid departure, especially the last week, was the result of her “take charge” self. As she often said, “there are no shufflers in my family”, and once she knew the outcome, she willed herself to depart as quickly as possible. Even the oncologist was struck by the speed. Once again, all we have is the fact that “everybody is different”, and Diane was definitely in the “different” group.

I am writing this five weeks after Diane's death, so time has worked some of its magic. Family and friends have provided the best support I can imagine, and for that I am truly grateful. I have spent the last two weeks with Gretchen and family in Bellingham, will join David and Maureen aboard their boat “Coyote” for the coming weekend, fly to Cabo San Lucas Mex to hang with Nathan for a few days, return for the “Celebration of Life” event later this month, enjoy Halloween with Michael and family in Manila, and honor Diane with a family celebration of Thanksgiving at Leucadia Lawns under the Palapa of Knowledge, and move on from there as I think Diane would wish. While it is certainly true that “no one gets out alive”, those of us left behind must comfort each other and keep the ship moving forward. Still, after 30 years of jointly captaining our ship, her physical absence will always be noted. I know for fact that her spirit will always be with me and us.

Diane has always reviewed these blog entries prior to posting, and so it will be this time, in spirit. Gretchen will do the hard work of chasing my errors.

Tom

update

the tibetan healer didn't have anything to offer for the cancer, but based on his exam, provided some herb mixes for general body heath and a two page do/don'ts for food.  nearly all of which we are already doing/don'ting.  hopefully the herbs will help.

i'm ordering some cannabis  tincture which michael thinks might help with appetite.

main issue now is that she continues to be weak, but a little stronger each day, i think/hope. is able to stand and walk [with walker] oneway [ride on walker going back] to bathroom and use toilet, which she prefers over the bedside commode. wants to sleeps most of the time [not good].  not interested in tv or reading. stayed awake/alert for a short skype session with brooke/kids this morning.  appetite is way down, so finding something that she'll eat is a challenge.   fruit juices seems to work today, toast/jelly . we're hoping all this may be radiation related [she's two weeks down stream from the last spinal treatment]. she's alert when awake and aware that she's been asleep to much, but is powerless to overcome just now.

michael and jill are here through tomorrow.  dave and maureen have taken over the cassita and are on call nights if needed [not yet so far].

we canceled the 5 day simonton workshop trip, which was to start this evening in santa barbara. d verbalized she knew it would be pointless because she's so tired and would not be able to focus, and being away from the care infrastructure we have here would be hard. i'll be looking for some similar workshops [meditation, imaging, mind body link] or instructors locally.

hospice has been good at providing equipment needs.  haven't needed people support yet.  should meet with more of the team next week.

dave and maureen took down our king bed and d and i now sleep side by side, she on her adjustable bed, me on a single.  her bed can be lowered and raised to make getting out/in easier and her head elevated w/o struggling with pillows.  she can adjust it herself. she can see the birds as before.  all good.



xoxo tom

a new chapter

the last couple of days have been a struggle, with d not able to walk and barely able to stand with help, but today she's up again and doing short walks [unassisted, but with walker] around the house and able to feed herself again.  thanks, we think, to a blood test discovery that her phosphate level was way low and yesterday we started a med to correct that issue.  seems to be working.  we're hoping for increased strength over time.  chemo is finished, she's not able to handle it anymore, which is to say that additional chemo treatment would likely bring an end of life well before the cancer might.  that means the cancer is no longer treatable by conventional western drug medicine techniques, at least until something better than the current chemo drugs comes along.  radiation for specific new bone spots is still a possible option, and possibly for a larger tumor at other sites should one be discovered.  the liver is more difficult to deal with because the tumor sites are spread out and small rather than one large site.

so d now qualifies for enrollment in hospice care which we have done.  hospice takes over responsibility for general, non curative, treatment of cancer related issues, mostly pain management.   all other medical issues will continue to be handled by our primary care system, scripps clinic.  it is clear from the blood tests that the cancer is ramping up and that d's liver is not working as well as it should thanks to the cancer there.  we may not stay with hospice if they are unwilling to do blood tests every couple of weeks and adjust meds appropriately.  there is some question about that. fortunately, we can bail out of hospice anytime without penalty. then we would be back in the general hmo treatment arena as we have been in the past.  but we would lose access to the hospice in home services and equipment until we reenter the hospice program, which can be done at any time.  it is all a trade off, no easy choice.

we are now free to explore alternative healing techniques that might have been in conflict with the chemo.  we do not plan on chasing every claimed cure, but d has done a lot of research into alternative techniques, and some of them seem to be worth pursuing. tomorrow we will see an MD with a Tibetan healing background.  we still expect to make the santa barbara workshop next week.  after that is unknown at the moment.

and that is all the news we have for now.

news of the day

no chemo this week, diane is not strong enough and chemo would likely do more harm than good according to the oncologist.   rescheduled start of next round for next thurs..  d is determined to rebuild her strength and proceed.  she did get another round of saline hydration via infusion yesterday.  seem's to have helped as she is up and about today with more general stability.  she drinks a lot of water, but we're going to start spiking it with low sugar gatoraid for the electrolites.

radiation went well last week, and the spinal pain diane was having is now gone.  so far, no other general pain has developed.

we're signed up for a 4 day workshop at the simonton cancer inst.  in santa barbara starting sunday afternoon 06sep.  the focus is on the mind/body connection.  diane has spent a lot time developing this link and we think a workshop will help.




today were are going for a big outing to target to clothes shop.  wahoo for us..

tomorrow we're going to investigate the tibetan healing center of san diego.

as always, thanks to all for the good wishes and prayers.   tom

update

8/19/15

It's been a busy time since the last update. As I write this, Cindy is taking D to the first of five radiation session for a new small tumor lieson on her lower spine. This new lieson was noted in a scan done about five weeks ago, but only last week did the associated pain get to a level that D decided to proceed with the radiation to kill the lieson and eliminate the back pain. This procedure has been done twice before and the side affects are relatively minor [mostly fatigue] and short lasting compared to the general chemo.

About three weeks ago, just after ending the previous course of chemo, D contracted a severe baterial urinary infection, which in concert with the last round of chemo [Abraxane/CarboPlatin] really knocked her for a loop. A ten course of Cpro antibiotic along with a three “chemo holiday” has helped considerably, but chronic fatique is still a major issue. A new round of chemo with a new drug is scheduled to start next Thursday, 27Aug, and we're hoping this drug will be effective and also be tolerated better than those used in the past. Fighting cancer is really a chemistry experiement. One never knows how effective [both immediate and long term] a drug will be, or how the drug will be tolerated [side affects]. Every situation is different and the statistical norms don't necessarily apply.

On the bright side, although blood tumor marker numbers [the fuzzy window] have continued to climb, a turmor scan [the definitive window] done about four weeks ago indicated only one new small spinal lieson [as mentioned above] and a 50% reduction in the liver tumor size. A second scan done last monday [three weeks later] indicated a no change condition from the previous scan. While we speculate that the increase in marker count might be caused by the combination of dying tumor cells and urinary infection, the professionals are divided on their opinion about what causes marker count to increase or decrease, hence the notion of “fuzzy window”. As always, a down marker count is agreed to be better than an up marker count.

For now, during the three week “chemo holiday”, we're doing the radiation waltz for five days, working on staying maximally hydrated, doing mild exercise daily [walking at the beach or around the house using a walker for stability], and eating well with a focus on protein to bring D's red blood cell count up.

Another bright spot has been visitations by family and friends and all the support [physically and spiritually] we've received.

We remain optomistic, one day at a time.

good news

on the 09jul15 onc visit d and i were treated to some good news.  blood tumor markers were down slightly [first time in a long while] and the liver tumors which had grown a little a month ago, had now shrunk significantly [not quite 50%].  on the down side, there were a couple of questionable [meaning the radiologist was not certain they were cancerous] new tumor sights on the upper and lower spine.  we took the report as overall good news and a positive payoff for the pain and suffering which d has been through especially over the last several months.  we were also encouraged to believe the new chemo drug [abraxane] was doing its job, unlike the previous drug, xeloda, which had not done well and had significant side affects.  the onc suggested adding an additional chemo drug, carboplatin.  the two drugs have been shown to be more effective than either drug by itself.  we said "go".  so the first 4-week cycle of the lastest chemo drug combo is abraxane+carboplatin.

yesterday, 15jul, d gave her usual weekly blood sample and the results were again positive in that the tumor markers were again stable in one case and again down in the other case.  although repeatedly warned not to make to much of the marker numbers, there is general agreement that "down" is better than "up".  and given that we have seen a steady increase in one of the two markers over that last 36 months and four [i think] different chemo drugs,  we tend to take small pleasures whenever possible.

the chemo cycle is four weeks.  three weeks of chemo infusion, one week rest, repeat.  today is week two of the first 4-week cycle with abraxane+carboplatin.   there had been two cycles of abraxane solo prior to starting this new combo.

as always, we look ahead one day at a time.

update

over last weekend, diane and i were increasingly aware that diane's heart rate was higher than normal [for her] and that it quickly jumped to 120 as soon as she was on here feet and moving.  while the heart rate has been behaving this way since her exit from the hospital, including doctor's visits where it was noted but not acted on, we agreed to pursue the cause more diligently on monday.  so, on monday we called the cardiologist and oncologist.  both offices advised us to go to urgent care if diane was feeling worse than usual, which she was not, and we were able to get an appointment with the onc for 10:30am [the cardiologist was set for this coming friday].  following the onc's exam [with a resting heart rate of 120+], the onc sent us to urgent care for immediate testing which included a chest xray, echocardiogram, ekg and blood tests.  happily, none of the test found something which would explain the high heart rate.  importantly, the xray and cardioechogram did not show any abnormal fluid around the heart [which was the cause of the hospital stay 3 weeks ago].  unfortunately the cause of the high heart rate is left unknown, at least until friday.

for now, chronic fatique, a side affect of the chemo, continues to be an issue.  we're hopeful that continued mild exercise will gradually return diane to a higher level of endurance.  just one day at a time..