Thursday was a very good day. I had a CT scan on Tuesday, and saw the gyn-onc’s physician’s assistant, Lisa Babayan, (Dr. Guntupalli was in Singapore giving a talk at a conference) who informed me, and Grant by phone, that there is no evidence of any cancer on the CT scan. Period. And my CA-125 number was 9, still well within normal range of 0-35. So I guess that makes me officially NED, No Evidence of Disease.
Wow. What a wild ride this has been.
I am so grateful for the fabulous team that I found, or Grant helped me find: Dr. Fields, my primary care physician and her team including Dr. Arellano, Dr. Gebrekidan-Asmerom, the gynecologist who suspected it wasn’t just a cyst, Dr. Blanning who turned me on to mistletoe, Dr. Guntupalli, the gyn-onc, and the entire team at UCHealth, Dr. West, who along with Dr. Fields will help me take it from here in preventing a recurrence, Joanne Henritze, M.S., exercise physiologist, and sympathetic and knowledgeable butt-kicker and cheerleader, and now adding to the team, Dr. Thomas, from Remission Nutrition, who will help me dial in the best way to keep this at bay. And it is important to remember the teams at Traditional Chinese Medicine, and LymphWorks, as well as Denise Proulx, Jin Shin Jyutsu practitioner, and instructor of Allied Health at Front Range Community College.
I am also so grateful for you all, my family and friends and team of supporters and cheerleaders, who have been following along on my journey. This has meant so much to me. Words cannot express. Thank you.
Finally, huge gratefulness for my love and my partner Grant, without whom I know this process would have been so much harder, if not impossible. Big love!
Onwards, and upwards!
I have applied to become a volunteer at University Hospital in Denver, one, because I would like to help and give back, and two, because there is a grand piano in the lobby that I have wanted to play, and it is reserved for volunteers. So I have begun the process. I am not through it yet, but I had a lovely meeting with the volunteer coordinator on Thursday while I was there.
It sounds very much like piano playing in the lobby could very easily become music-assisted counseling, depending on who is listening, what the music triggers for them, and how they react. So I will apply two of my skill sets there, once approved, and will play for an hour or two when I am down for check-ups.
Speaking of which, check-ups with most of the docs will be quarterly from here on out, at least for the first year. Lisa Babayan even said the CA-125 number now is not an indicator, once again, because so many things can affect it. It, on its own, is not sufficient to diagnose. Only if I begin to have symptoms. And that is not going to be a thing for me, I’m determined.
So one of the ways I will be fending this off, and staying as healthy as possible, is to be very careful with my diet. To that end, I have begun to see Dr. Thomas, an ND, in Denver, regarding appropriate diet for staying in remission. I had sent her my responses to a very thorough questionnaire ahead of time, and we spent two hours together with her asking even further questions.
On the phone ahead of time she had said she wasn’t sure if a ketogenic diet would be appropriate for me, until she saw labs and reviewed my case. After meeting with me, she thinks it would be appropriate for me. It has been shown to be very effective with the kind of cancer I had. And there are no red flags in my case to cause her to veer away from it. However, she is willing to give me some time to ease into it. I am doing pretty good staying Paleo, but Keto is stricter about carbs and especially sugars. And this time of year it is very hard to avoid Palisade Peaches. I even said, maybe life isn’t worth living if I can’t have Palisade Peaches in season. Yum! So she’s giving me a few weeks.
One of the things I’ve been curious about is about ancestral heritage and diet. The Paleo Diet is based on the assumption that we humans have been evolving for thousands, or millions, of years as hunter gatherers, not as farmers and ranchers, and therefore our physiques require the hunter gatherer diet. Then what about all those diets that have come and gone which infer that, for example, the Asians are so healthy, so everyone should eat Asian style, or the Italians are so healthy, so we should all eat in the Mediterranean style? But what if I don’t have Asian or Mediterranean genes? Should I be eating more in the Viking style since my ancestral heritage is much more centered in northern Europe and Scandinavia? She agreed with that idea, and partly for that reason, feels the keto diet will be appropriate to me and my heritage. She gave the information that Asians have a certain gut flora, they are still not sure why, that allows them to process soybeans, in a way that many other humans cannot. So, we are both looking forward to how my 23andMe results turn out. It is showing they are 7/8 through the process in being ready to report. She will be able to advise more specifically once she knows those results.
Interestingly, there is also a gene that determines whether coffee works for a person or not. I have a hunch that coffee is not good for me, but I do have a sort of compulsion towards it, mostly for the flavors, sweetness (non-sugary of course), and fatty creaminess, which I put into the coffee. So…, anxiously awaiting results.
In any case, we had a very lovely chat, and I am looking forward to reading her recommendations in full, which I have not yet received.
I had a session with Joanne also on Thursday. (It was a big day!) She really worked me harder than she has before, and I have been sore the last few days. We are finally to the point where we can work my abdominal muscles, which were basically severed from above my navel, to almost my pubic bone. We also worked my legs and, um, shall I say, posterior, as I lost a lot of muscle mass here. Building back up will be good for me. She has said, yes, gain weight, but let’s make it muscle weight, not just fat weight. Like I’ve said before, I’ll probably come out of this experience healthier than I’ve ever been.
Lisa Babayan clarified for me what Dr. Guntupalli said last time. I had misheard HRT or HST, but what it was actually is HRD, which basically means that the tumor that I had was very responsive to chemo. Can I just say Hallelujah? I know I’m not so churchy anymore, but that is how I feel. I am so grateful that Dr. Guntupalli did the laparoscopic surgery first, determined that it was too far spread to cut out, and elected for chemo first. I was quite resistant, but after consulting with all my advisors, we went ahead with three rounds of chemo, and it worked great. And that is why. If surgery had been the first thing done, it would have been much more debilitating, likely affecting my digestive system and intestines, maybe having a colostomy, and therefore my quality of life from thereon out would have been much lower. I am so grateful for that decision of his. Again, Hallelujah. Grateful also that it was so responsive to chemo. Thanks to that HRD. I don’t understand the mechanism, but there it is.
I also found out for sure this week that the type of mistletoe I’ve been having is the one that is most effective for me. It is Viscum Mali, also known as Helixor, and that was the one found to be most effective in the BioFocus testing that was done in Germany. I have had it both subcutaneously and through IV. I’m sure that has helped my situation as well. Again, Hallelujah.
As I said last time, my finger got slightly infected. However, treatment worked quite well, and it got back to mostly normal within a few days. I had been concerned with my low white blood cell count, that it could really get out of hand, literally, so I am relieved to report it was dealt with quickly and relatively easy. Dr. Arellano stated that if my white blood cell counts had been normal she would have taken a wait-and-see approach but we decided together not to risk it.
I am happy to report that my hair didn’t really re-fall out after fourth and fifth chemos. Maybe a little thinning. Eyebrows and lashes thinned. But I still have hair! So now it can just continue to grow. I’m tempted to color it, at least to something that approaches the sun-bleached color it had been before, if not something completely wild, like purple or teal. We’ll see….
I am also happy to report that the insurance company has confirmed that they now (finally!) have all the documentation they need to determine my eligibility for long term disability (LTD) insurance. There was a long delay, starting with their original request in mid-June, in getting some records from University Hospital, and multiple third parties who handle records releases, which would show there was not a pre-existing condition. I finally woke up to the fact (after I felt “weller” after surgery and chemos) that I could probably access that information myself on my electronic patient portal, so I found it, and sent it off. I’m not sure if that was the final information, or if they had actually finally gotten the records themselves, but in any case, they have them. They will be making the determination on Tuesday, 9/11 (I hope that’s not an omen.) Cross your fingers for me, please. Or prayers, thoughts, positive vibes…, whatever feels most comfortable for you.
It would really be helpful to the finances, and to give me more time to recuperate from the cancer and the treatment thereof. My immune system is, and may stay, compromised from the chemo. Lisa Babayan said that my white blood cell count will likely come back up to my “new normal,” whatever that is, within about six weeks of the last chemo treatment. So I’ll be interested to see where it lands.
Also, I lost a lot of body weight and muscle mass which Joanne has been helping me regain, and will continue to. But in the meantime, my strength and endurance levels are not back to my pre-illness levels, and when I say pre-illness, that may mean a couple of years ago, because who knows how long this was really brewing? Having some financial support would really help me get back on my feet.
So, I’ve been getting back to work, very, very part time, as a private practice counselor. I’ve also been helping Grant with his construction business, also very, very part time, with small errands, or discussing and brainstorming scheduling with him, or whatever seems most helpful at the time. Nothing too demanding.
Just one foot in front of the other on the road to recovery, wellness, health. Whew! What a relief.