Another Round of Pain and ER
On Saturday night of last week I got to feeling really bad again. I suffered through the night, and then called the on-call docs at University Hospital on Sunday morning and decided to go back in. I was hoping they’d be able to do some more suction and relieve me of some of the intestinal fluid build up. So we went down, prepared for me to get admitted again. Well, that didn’t happen. I was there for a number of hours, in the ER, while they ran more tests, consulted with each other, and finally decided the best they could do was change up my pain meds, and maybe offer a few more meds as well. So Grant had to come all the way back down to pick me up again. But I did feel better, and I think it did help stabilize me.
I think the perfect storm of what really caused the pain on Saturday, was 1) not having had my Pepcid antacid which was supposed to have been in my TPN, but which hadn’t been for a few days, so I was having painful acid stomach, 2) I decided the oxycodone wasn’t helping my stomach and I didn’t feel like I needed it for surgical pain, so I quit it pretty cold turkey (mistake!), and so then a storm of pain just grew and took over. So now that Pepcid is back on board, and I’m staying stable on pain meds (morphine this time) I’m staying more even keeled. It seems to be better to take a little bit of pain meds more often, rather than letting it go too long.
One of the things that was weird after going to the ER on Sunday was that they had prescribed various meds which I was supposed to be able to pick up from their ER pharmacy before I left. However they were out, and of the one major ones I was really going to need, the morphine. It is an oral solution that I do sublingually as I can’t really process it any other way. I used oxycodone in the meantime, and then checked with various pharmacies around and discovered that is not something they usually carry. So I ended up back at the local hospital pharmacy, which did have it in stock, which was a relief, but then there were some questions about how things were packaged and how they couldn’t be broken down, and did the docs authorize that quantity in that case?, etc., so it took me until late afternoon Monday to get that going and on board.
I had needed a lab draw earlier in the week for my follow up with Dr. G on Tuesday. The home health service had suggested they could come out Monday but I was in town anyway so I stopped by my usual lab to have them draw it, and found out that now that I have a PICC line they are not equipped to take blood that way at that location; I’ll need to go to the hospital in the future. So in that case, I just let them poke me again.
The TPN (total parenteral nutrition) formula got tweaked end of last week, for more fluid volume, and to include the Pepcid, so I’m not struggling with the dehydration, or the acid stomach. It runs for 12 hours overnight, and now that there is more volume running in that 12 hours, it wears out the batteries in one session! At least batteries are provided with the “prescription” of TPN. But it seems like rechargeable batteries or an AC adapter would be less wasteful. We’ll see if we can make that happen.
I have to say that in some ways TPN is very easy. I am relieved of the need to shop, cook, actually eat, clean, or even process and digest actual food. Of course the downside is I don’t get to taste actual food. As I think I’ve said, I keep watching cooking shows, especially America’s Test Kitchen and their subsidiaries, and that seems to be satiating in its own right, interestingly.
I have had a number of PEMF sessions in the last week. CJ uses muscle testing and her intuitive healing sense to pick the most appropriate three frequency programs to work each time I’m there. For example, yesterday she ran programs for Ovarian Cancer, some kind of Rest and Relaxation, and Immune System Balancing. It changes every time. It is very relaxing usually. However, yesterday’s was interesting as for part of it I was having muscle twitching in my extremities. With the state loosening stay-at-home orders, CJ’s schedule has filled back up so my next opportunity to get in will be in a week.
I had a phone session with one of my IFS counselors this week. We jumped right in to parts work around the cancer, and some interesting things came up, most notably that the cancer is a part, who has been trying to get my attention. So we’ll see what comes up next week about that.
Follow up with Dr. G
Grant and I had a virtual follow-up visit with Dr. G on Tuesday. We both agree he is a gem. And he is telling it as he sees it, which is that the best he can offer at this time is some more chemo, but it might not buy me much, and might negatively impact quality of life, so no pressure from him either way. He reiterated that surgery is just not a great option, as once cancer gets in and around the bowels it becomes sort of a moving target, and do I really want to keep having surgery, and recovering from it, only to have it show up somewhere else? We discussed more radical surgery options, which he said he has done on other patients, but don’t seem appropriate here. So apparently the whole gyn-onc team is of one accord when it comes to that. He apologized for not being very available lately due to the whole COVID-19 situation. His best guess is that I might have up to six months. He is a good guy, and he’s gotten to the end of his tools. That must be very hard to take, as a physician. He’s chosen a hard specialty.
Medical Aid in Dying Act
So I’m happy to live in Colorado which has authorized the Medical Aid in Dying Act, as of 2016. So I had already begun the process with my primary care physician, Dr. Johns, and have gotten through some of the steps already. Still a bit to go. Dr. Johns would be primary, and Dr. G will be secondary. They both say that most of the people they have helped sign up for it don’t go ahead and use it, but I do want to have it in my back pocket, just in case. So that is in process. And to be clear, I am still planning on doing “all the things” that will help me create my own radical remission. I realize that just because Dr. G and his team are at the end of their rope, that I am not, in fact, at the end of mine. But it is sobering. A certain amount of putting my affairs in order seems prudent. Other kinds of paper work also need organizing.
I have had two mistletoe IV treatments this week. It also includes high dose Vitamin C. Grant took me to Boulder on Tuesday for the first one, and my Dad took me Thursday. On the way down on Tuesday I got to feeling really nauseous and unwell in the car, and we had to pull over so I could attend to that. Grant checked with his ex, a nurse, an found that if one is not used to opioids on a routine basis, they call it opioid-naïve, it can cause nausea at first. I think I might be over the worst of that now.
Nice Visit with Maria and Yani
After being in Boulder on Tuesday, Grant and I met up with Maria and Yani in a park in Longmont, Thompson Park. Maria brought a picnic which was lovely. They have tenants who run a Chinese restaurant so she had picked up some meals for us from them. I had a bit of broth, but Grant chowed down. We again did the outdoor social distancing thing, and it was lovely. I’m enjoying that part of “physical distancing” that often it takes us outdoors on lawn furniture or lounge chairs, out amongst the green growy things, and watching everyone else who is out and about, often with dogs. And even squirrels running around.
Nice Visit with Phyllis
My friend Phyllis read my last blog, had a wheeled walker, and offered to bring it out, so we made that happen Wednesday. To be extra safe we hung out in the back yard talking, probably a good 12 feet apart. We happened upon each other professionally, but the relationship rapidly became a good friendship. We’re very much on the same page, so we had a nice chat, and I got the use of a fabulous wheely-walker! However, the down side, is that it is just that much too wide for our bathroom door, which is narrow. Alas. So I won’t be able to use it as I had intended, but it very well may see other uses instead.
Home Health Nursing
Another set of helpers that has joined my team are the home health nurses. They will stop by the house if I need them. And they also stop by weekly on Thursday to change the dressing on my PICC line and take weekly labs to make sure my nutrition is appropriate. Yesterday’s nurse, because of constrictions in both of our schedules, came at 7:45 a.m. But it all went well, and I’m “dressed” for another week.
Nice Visit with my Dad
Thursday Dad drove me to Boulder. I really have to be careful about driving because these pain meds cause drowsiness; hence, the rides. We drove down and back on our old family track that we always used when we lived in Boulder and would drive up to Fort Collins every other Sunday to see the extended family, including grandparents. So that in and of itself was nostalgic. We had a nice chat. And while I was having the infusion, Dad did a little hike up on the mesa behind NCAR, which is something he always liked to do when we lived there. We drove by our old house for a little bit of nostalgia. And it was a beautiful day, too. Spring has sprung finally, and all the fields and meadows are just full of lush green grass. One has to appreciate that while one can, because it doesn’t last long in dry Colorado, cold semi-arid steppe that it is.
Denise continues to do energy work on my behalf from afar. She seems to be unearthing interesting things. Among many other things, she got the vibe that it would be good if my black cat (“Do you have a dark cat?”) would sit on my belly as he has good energy for me. So I’ve been taking him up on his willingness and desire to give me hugs. I think I’m safely enough past the surgical issue that it’s okay to do that. There’s quite a bit more she’s been pulling as well, but probably too much to go into here.
We are still in the process of learning about Cellect-Budwig and what of that I can add to my protocol. Denise’s energy work pulled from the energetic side that it would be okay for me, but that Doxil is probably a no. So at this point I’m willing to give it a try, although it will have to be modified because of not being able to eat.
Small Bowel Obstruction
Have I actually come out and said this, that this is the problem? I’m not even sure. The basic fact is that there is a blockage in my bowel which is keeping food and liquids from going through, so it backs up, gets uncomfortable, disallows processing of nutrition, and therefore the G-tube was inserted to allow for diversion of fluids out of the stomach and into a bag. And I’m not eating any solid foods. And I’m only getting nutrition via IV. There, if I hadn’t said it before, that’s what’s going on.
That is probably more than enough for now. I’m finding I’m a bit slower on the writing aspect as I’m a bit drugged/drowsy. Maybe you’ll be able to tell? I remember getting funny emails from my ex- that he had written after taking a sleeping pill. Maybe it will be like that.