Newsings & Musings

Massage 1 Results

The day after the miraculous results of the massage last week, I was again, very sore and uncomfortable. So disheartening. However, one of my housemates suggested that with that kind of deep tissue massage one often is sore the next day. So that’s a thought.

Massage 2

So last Friday I had a massage with my favorite lymph drainage massage therapist. Due to her being covered by insurance, and me having a large credit with her, I figure she’s my most go-to helper in this way. She didn’t work the abdomen as hard as the oncological massage therapist, but in the process she did decide that based on what she was feeling, my sigmoid colon seemed normal to her. That aligned with my experience of certain things, ahem, coming out. Maybe that stricture is loosened up already? I don’t know. I didn’t experience the kind of relief that I did with the previous massage. But maybe.

Dr. West

Yesterday I had a phone meeting with Dr. West, because due to COVID-19, they are only doing virtual appointments. She was looking at test results from about two weeks ago, and my levels that are off are explainable by this continual pain and inflammation. So I’m on the same protocol.

Based on everything I told her she’s thinking maybe it is a combination of three things: 1) adhesions and scar tissue, 2) side effects of Rubraca, and 3) possibly ulcers throughout my digestive system. Mouth sores / ulcers (stomatitis) are a known side effect of Rubraca, and I have them, so why wouldn’t they also be elsewhere? And another is abdominal pain, with no further explanation of where or why. Further, a third is constipation. And all of this starting hitting the fan for me only a few weeks after I started this particular PARP inhibitor. So I’m really wondering whether I can / should continue with it, or with any PARP inhibitor.

So based on that discussion, I am going to consult with Dr. Guntupalli at my next (also virtual) appointment on Thursday to see if I can change PARP inhibitors, or reduce the dose, or something. (BTW here’s on article on him from the Denver Post about how the hospital he is at is preparing to deal with COVID-19. It gives some interesting family history about him which I liked learning.)

In any case, this is unsustainable to me, to just continually be in this constant abdominal pain. It is really messing with my QoL (quality of life). I have lost a lot of weight. I’m 5’9″ and am down to 112 lbs. That is not good. I look quite skeletal. Ugh. I just want to feel normal again.

I have told her, and others, that this has been the worst experience of my whole cancer journey. And no end in sight, which is also what makes it hard to bear. Something has to give, or it will be me.

Rolfing

Yesterday I had an appointment, finally, with our local friend and rolfer Tim, who Grant swears by. He also worked me pretty hard, and felt that he could actually feel the various strands of scar tissue descending into the abdominal cavity from the surface incision sites.

I was again quite sore last night before bed, got up in the middle of the night to take acetaminophen and ibuprofen, which do make a quick and noticeable difference, but may not actually be that good for me, especially if ulcers are an issue, and today I’m evaluating whether I feel any better. From what I understand it will take multiple treatments to really get things loosened up and undone.

So I have another appointment next Monday. I can thank the COVID-19 scare for that, as all non-essential, non-medical appointments have been deemed inappropriate, and so Tim has lots of openings.

Works for me, but I worry about all these wonderful providers, small business owners who have suddenly and unforeseenably lost huge chunks of their monthly income.

After the appointment it is always recommended to go for a walk, which has been hard for me during this. The abdominal pain makes it hard for me to stand up straight, I feel myself pulling to the right in a sort of defensive posture for the pain that is on the right. But I slowly shuffled around his block, and noticed there were lots of folks out and about walking, or kids playing in the park, or people walking their dogs. All seemed to be staying 6′ apart, unless it was fairly evident that they were members of the same household anyway. Physical distancing to avoid spread of COVID-19 is hard, but also easy.

COVID-19

We are definitely noticing the slower pace of living this way. Fewer airliners overhead, if any. Much less road traffic. Still hearing quite a lot of ag and oil and gas trucking going by on the two highways which are literally one block away, and perpendicular to each other. People are out in their yards more. Going for walks more. On Facebook more. So much humor goes by there that it is really entertaining, and good for us, to be able to laugh at this situation.

Some people are listing off all the things they’ve accomplished while “stuck at home” and oh my! It makes me tired just reading it! I don’t have that kind of energy even when I’m well, much less now. I wish I could enjoy it more.

Whatever work that can be done from home is being done that way. However my partner does work that cannot be virtual, by definition, so he’s out and about in it, on a very small scale, and in pretty safe ways. Certainly not in big groups of people.

We did go for a drive in the great outdoors on Sunday, just to get out and about, took the dogs, and did not see another person who wasn’t in a vehicle. So pretty safe I’d say.

Dr. West clarified that even though my blood work all looks pretty good, just the fact that I’m on Rubraca makes me immune-compromised because it is an immune-suppresant. That is sobering. I always said I would never go there, after my mother died prematurely from immune suppression drugs treating her rheumatoid arthritis, and yet here I am. Maybe she was also HRD+ and that is how it manifested for her. I don’t know. I’m not sure how the science of that works.

In any case, COVID-19…. I feel that we are at a massive turning point for humans on the face of the planet, and things will never be the same again, and hopefully, that is a good thing. We shall see….

Radical Remission Docuseries

One of the things that has been going on during this social isolation time has been Kelly Turner’s Radical Remission Docuseries. What great timing! One hour, free, every day, on the 10 things she found to be most important for those who managed to beat cancer or other “hopeless” illnesses like MS or Lou Gehrig’s Disease (ALS).

It has been really good to revisit all those topics in depth, with interviews of survivors as well as providers. Re-inspiring. I am realizing how much I’ve let down on all of them.

Having a Strong Reason for Living

And the fundamental reason why I’ve been letting down is that I’m having problem with one of the tenets, “Having a strong reason for living.” So I’m working through that a bit, realizing through my IFS lens that really I have a part who doesn’t really know what the point of her existence is, never has.

Also I have been working through the Radical Remission book, and some of the exercises she recommends, which are credited to Rick Jarrow, are about visualizing a few different scenarios: 1) What would you do if you had a zillion dollars and were guaranteed success? and 2) What would you do if you knew you were going to die in two years but would be symptom-free in the interim?

Interestingly for me, the answer was immediate for both, and exactly the same: go to France, probably in the south-ish, but not tourist-y central, have a little, ancient, rock house in the country, read, write, experience French culture where they are so good about making everyday things art forms, and just live.

I don’t have a strong drive about DOING something, or PRODUCING something, or having a CAREER, or a MISSION. Probably a big part of my problem throughout my lifetime, at least in this American culture. I just want to experience nice things, quietly, subtly, reservedly, possibly even introvertedly. I don’t want high pressure. I don’t want noise and chaos and competition. I just want people to be nice and if they’re not, I don’t really want anything to do with them.

I’m thinking I should play lotto and hopefully win said zillion dollars so maybe that could become a reality. Otherwise I’ll have to play “be-tend” at home.

At the very least I need to remember that my five highest strengths (input, intellection, futuristic, ideation, and adaptability) from the Clifton Strengths Finder include taking in a lot of information, processing it, thinking about it strategically, and just enjoying it. Hence the “reading and writing” part of my fantasy. I’m not really a hands-on doer sort of person. I like pondering, leisurely, and at will. Anyone who knows me knows I’ve never really been a high-speed, go-getter type person. There are other Clifton Strengths that describe those people (focus, achiever, activator, discipline, etc.). What I have always struggled with is how do I earn a living from playing leisurely with ideas? Hence the need to win lotto. Or maybe I can organize my thoughts about some topic well enough to write a book. Or maybe not.

So that’s what I’m struggling with. What do I really want to do with this life on this planet at this time? What is really possible? Sometimes I’m ready just to be done, because of the chaotic cluster-f*ck that humans have caused on so many levels on this planet: climate catastrophe barreling toward us, cheeto-head for president, now COVID-19. I definitely have some parts that are ready to go on to the other side. So answering the question of “What makes you excited about living?” I have to be pretty honest and say, “Umm, not much. Really.”

I’m open to the idea that being here is a sort of assignment and it’s not really about what I want, per se, but rather, how can I help? And yet that also seems like, “Am I helping? Have I ever helped? Whatever help I can offer, is it remotely enough to make any difference whatsoever?” Dunno.

Dolores Cannon and others like her would say that just being here, just lending positive energy, just being a sort of beacon may be all the purpose one has to have at this time on planet Earth. And that that’s okay, and valid. Pretty hard to take. I feel like I’m sitting here twiddling my thumbs, not accomplishing anything helpful, nor enjoying myself, neither one. It’s distressing.

So clearly I’m neither Self Led (IFS), nor in Presence (Tolle) at the moment. I’m feeling afflicted by parts (IFS) or ego/pain-body (Tolle). I suppose that is part of the journey of a potentially / likely terminal diagnosis, to work through all these questions, and come to terms with them.

The Other Side

I ran across a new person to add to my list of people who are interested in “the other side.” I can’t even remember how she showed up for me, but her name is Suzanne Giesemann, former high ranking U.S. naval officer, turned medium. I’m reading her book, Messages of Hope, based on her experiences which turned her on to the “other side” perspective. That helps. It is helpful for me to remember that life on this planet at this time is IN NO WAY the only thing going on. There are other levels of existence. There is connection and love.

So it is hopeful, and it is also helpful in remembering why I’m not overly attached to this one life. I keep thinking about it in terms of bodies as vehicles for soul. I have a body that now is compromised pretty extensively. It could possibly be fixed, but it might really be totaled, in other words, not worth paying to fix.

If I were terrified that this were the only life and I was terrified of dying or annihilation, of course I would be doing everything, in a sort of panic-induced state, to TRY AND STAY ALIVE!!! But I don’t feel that way. I know it’s not that scary. I know there’s more than meets the eye.

So that’s the question, is it time to turn this body in to the junk yard (ashes to ashes, and dust to dust) and go get a new vehicle? Or do I keep this one limping (currently literally) along a little longer? I’m not afraid of losing connection with my loved ones because I know souls are forever and loved ones travel through soul-space-and-time together. It wouldn’t be goodbye forever, just “See you in a bit.”

So there I am. “Break on through to the other side”? or “Should I stay or should I go?” or “I still haven’t found what I’m looking for.” or …. other suggestions?

In any case, implementing exercise, or special diets, or thousands of pills a year of supplementation, are kind of hard to get motivated for if the current body is “totaled.” One of the things I’ve noticed in these Radical Remission testimonies are how many of them made the choice to work hard to stay because they had little children. Of course. I would too, if I was in the same situation, but I’m not. I don’t have that. I don’t have any children. I’m not anxiously waiting for a kid to graduate, or get married, or for first grandchild, or anything like that. That is not part of my current life trajectory.

In fact, there is some indication from Dolores Cannon and others that some of us souls came into body and deliberately did not have children so as not to have those kinds of ties to this life. So there we are.

Whatevs.

I could do some more very literal soul-searching to find out more about if there’s more for me to do on the planet. Whatever it is, is either very subtle, or not quite evident yet. Maybe COVID-19 will be enlightening.

That’s enough for now, probably far too much.

Musings of the inhabitant of a potentially totaled body.