Getting by with a little help from my friends

Wow. Where to begin.

I am enrolled in Hospice and that often is a foreboding word, so I thought I would explain a little bit about the services provided, which are so much more than I expected. As I anticipated, they will deliver services to me here at home as long as I am able to live here. Fortunately, if the need arises, I can transfer to assisted living, which is just down the hall from our apartment, and Hospice will supplement any needs over and above those provided by Bell Trace.  I get a weekly massage—my first being today—and, though I knew my shoulders were tense, I didn’t realize how tense until the massage. I fell asleep before she left!! I have a traveling wheelchair courtesy Hospice, and I am probably safer in a chair than on the rollator now. Ralph and I meet with a social worker tomorrow and I will be visited weekly by an RN.

Well. First of all, I am comfortable with no need for pain easement. I am seven weeks after my last infusion and there are a few intimations of my mortality. Small changes in the “gyring” of my inner gyroscope, shortness of breath, headaches and, of course, the blasted fatigue—there are so many things I still want to do!!! I had hives for a few days after Dr. Dayton broke the news, and still find many spots that need scratching from time to time. Occurrences of burning mouth more frequent, weight dropping rather dramatically, and some chest pains—none lasting very long. Just letting me know my body is preparing me for the inevitable. Food mainly tastes like sawdust, and my appetite is waning. I even passed by liver and onions the other night. Not funny, but I had to laugh when the hospice RN said, diplomatically, “Beth, it will be OK to use Aleve now before getting into the opioids. It’s only interaction with deflenac is ulcers.” And so it goes.

I’m keeping busy and Ralph is a terrific helper—I’m still in an “I’d rather do it myself” mode, and he humors me as he is pampering me. And I am learning to accept help and say “thank you.” B

Love,  Beth

Bad Road Ahead

I have been dreading this day, but I must tell you that I am no longer taking keytruda infusions because the cancer, particularly in my left lung, has grown considerably between the last two MRIs. There were other options--but none that gave me more than 5% chance of remission and most of which are very hard regimens for the body and then going through the rites of passage of dying on top of that. There are, as I read my medical record, at least 11 places in my body to which the cancer has metastasized and it would be foolhardy to think they will not show their ugly faces, so I chose not to pursue treatment. Ralph is in reluctant agreement that this is the best course of action for me right now. 

 My last infusion was mid-June, and I've known this for a week or so now. It was my intent not to burden you with the information until there were more specific infirmities that made it seem imminent, but that has kept me from emailing you above a facebook posting or two, and it is more important to me that we communicate than to keep this a secret.

 I think I was not as surprised as I thought I would be. A few months ago, I went through a strenuous time and I think that might have been a foreshadowing of knowledge that my body wasn't working well. Though I've kept a positive attitude about it, I've felt a diminishing of energy, balance, and lung ability. I'm having a few bad days here and there--mostly related to high blood pressure which I'm sure is a result of the stress I'm feeling. But it drains just a little more strength from my body that it needs to fight whatever is coming. 

 To most intents and purposes, I am the same old, same old; I treasure each day and keep myself busy writing and painting. I expect to keep that up as long as possible. There's no timeline here and I expect to keep chugging along as best my body will let me. I just need for you all to let me be me throughout this stage of my life. Again, I am so thankful for the past two years.

 Again, take what you will from these postings. I will not be posting frequently and do not intend to add a great deal of day-to-day detail, but probably will add some of my recent thoughts on the subject, for what they might be worth to you.

With a heart bursting with love,  Beth