Wrapping It Up

Today marks the third anniversary of my ovarian cancer diagnosis. I had my last CT scan about a month and a half ago, and it showed rapid growth of tumors, particularly on my liver and spleen. My CA-125 (tumor marker) 5 weeks ago was in the mid-600s which is where it was when I was first diagnosed. I also had an embolism in my left lung which is apparently common for cancer patients, but I have felt no symptoms from it.

I met with my oncologist a few weeks ago, and have decided to suspend any further treatment. The Avastin is no longer working for me–it usually will slow cancer growth down for about 6 months but I got about a year out of it. So I am officially on hospice now, even though I mostly feel okay and can still do things for myself, gradually with more and more effort it seems. I have been asking here and there throughout my treatments exactly how one dies from ovarian cancer but never got a straight answer. In my last meeting with the doctor he painted a grim picture of intestinal blockage and throwing up alot, so I was feeling some anxiety about that. When the hospice people met with me the first time and I told them his description, they looked at me like I was crazy. They countered with a peaceful, albeit drug-induced serenity at the end. I figure they know a heck of a lot more than he does about dying, so I’m going with their version.

I do want to share a few insights I’ve gained through this 3 year journey in an effort to “unmask” some realities of ovarian cancer. Here are some things I have learned:

  1. Don’t get your port taken out after your first round of chemo. I was foolishly hoping that if I removed it, the cancer would disappear too. My first scan was completely clean after chemo. Six months later it was back with a vengeance and I was sorry I had to go back and get a new port put in.
  2. When your platinum drugs start to fail, don’t rely on Avastin alone to keep the cancer under control. Parb inhibitors are the latest drugs, and there are more being developed all the time.
  3. I took the dewormer, Fenbendazole for about a year. It was impossible to tell if it helped or it was the Avastin alone that slowed down my cancer, but in all my reading and groups with ovarian cancer, I did not hear of anyone that was cured using it. I do believe some cancers respond to it, but I don’t think ovarian is one.

The worst I had to endure:

  1. The initial surgery I had in which they removed two small sections of my colon, forever ruined my digestive system. Without getting too graphic, let’s just say it all became very unpredictable and traveling or even leaving the house for any length of time was scary because I didn’t know what would happen, and there was no stopping whatever was coming.
  2. Although I have been told this is very rare, the carboplatin attacked my bladder to the point that I was having to urinate constantly. Even the oncologist finally acknowledged that it was the carboplatin because when we started the second round of chemo a year later, it happened again. And when we stopped it, it gradually went away. This was so bad, I can’t even stand to think about it! I’m sure my life would have been extended another year if this had not occurred.
  3. Losing my hair of course, and to think this is third on my list says alot about the other two! You’ve heard of chemo curl, in which your hair turns curly after having chemo treatments? Well, this I have never heard of–my hair went from very thick, naturally curly hair to limp, soft and straight. I learned to appreciate my curly hair.

The best part of the last three years:

  1. Having the gift of three years of life to do many things I needed and wanted to do. I got to retire! I did a ton of family history work! I took a few trips I’ve always wanted to take! I got to see my granddaughter growing up and spend some time with her! I did a blog to help others! I learned a little about drawing and water coloring! I’ve read some fantastic books! Lately I’m trying to see every good movie out there that I’ve never seen before. I cherish all that I’ve been able to do and accomplish.

My last thought is please don’t feel sorry for me–I don’t feel sorry for me! I have a strong faith in the next life and hope for a better world. 2020 has been a difficult year for all of us, and the worst for me, next to 2017 when I was diagnosed. I posted Mount Rushmore as my featured image, from the trip I took there last year. A reminder of the strength of our great country and hope for the future.

My love and thanks to all who have helped me and continue to make it all worthwhile.

Relaxing Update

There’s nothing like a cancer update to take your mind off of a worldwide pandemic. Just doing my part. The above photo I took at one of my favorite places to relax, Mirror Lake in the High Uintas of Utah. I hope you enjoy it as I fill you in on my cancer progress since early January.

Just to remind you, I was started on Tamoxifen (an anti-estrogen pill) in January which sometimes helps slow ovarian cancer. I’m still taking the Fenben (dewormer) and getting Avastin chemotherapy every 3 weeks. I have not changed my diet mostly because there’s only certain foods that appeal to me right now, such as fruit, salad, cottage cheese, cheese and crackers with an occasional taco or burrito. Oh, and Skinny Cow in the evening. I saw my oncologist this week and reported that I was feeling about the same with no abdominal symptoms. I asked him about parp inhibitors which seem to be the up and coming treatment for recurring ovarian cancer. He informed me that they are usually given as a maintenance treatment after receiving successful platinum chemotherapy. Since I have not had that for about a year (remember my bladder can’t tolerate those drugs), we would have to jump through some hoops to be able to qualify for it. I really was just interested in why he never brought it up before and that answered my question. It’s also like $10K per month (over the counter I presume) so I’m not likely to go for that. Every decision I make is predicated on the cost/benefit principle of life. Does the cost of my choice or behavior outweigh the benefits I may receive?

Here is something interesting. My cancer markers since December:

3 December 2019    163              28 January 2020     262     avg. increase per week = 12

18 February 2020     297             avg. increase per week = 11

10 March 2020     312                  avg. increase per week = 5

My latest increase came in at the lowest I’ve had, so that is good. I am taking more of the Fenben than I was–5 times per week with probably a slightly larger dose. I am buying the 4gm dose and just estimate what 1 gm is. And perhaps the Tamoxifen is helping as well. We are continuing with the current treatment until I see him again in July.

So that is the update in a nutshell. Be safe, love your family and wash your hands:)