I had my PET scan on 6/23/22 thanks to the awesome folks at ARA who squeezed me in. The following morning, just after 8am, I received a call from my Oncologist's office letting me know she wanted to meet with me at 2pm. Knowing she wanted to meet with me, we thought that it couldn't be great news, as they would have happily told us good news over the phone. I ran to the computer to check the patient portal and saw that the PET scan report was already accessible in my account. Usually these results take a few days. So, I called Drew into the office and we shut the door and reviewed it together. Before seeing the report, I honestly felt in my gut that the cancer had spread to my bones, due to the symptoms I have been having this year. We were a little surprised to see it in SO many places in my bones though. There are many cancerous areas---in my ribs, sacrum, pelvis, hip, spine. But, the PET only scanned from my nose to thighs. Honestly, I feel it in my legs. In addition to these places, the cancer is also in a couple of places in my liver, as well as some pleural space in my right lung area and in MANY lymph nodes below and above my diaphragm (even one by my heart). Needless to say, we both were just in tears reading it.
I have been feeling my body "deteriorating" over the past year, but I figured some of it was just attributed to "getting old." Ha! Now, I know there are other reasons I was feeling tired, less motivated to do things I used to love to do and why I have been losing weight I don't have to lose (I just haven't felt like eating much).
Anyway, after Drew made some super nutritious juice for me in the juicer and I got some nutrients in me, we decided it was time to sit the kids down and tell them what was going on. We were completely honest with them, but also told them that God performs miracles still and we are going to attack this from every angle that we can. We have so many people praying for healing, and God is leading us to the right treatment for me.
At 1pm, I had a call with another alternative/integrative/natural healing center in Florida to discuss what they had to offer. I have felt led to use a lot of natural therapies that I am constantly researching and finding science-based and results-based data to support. I would love to go to a place early in my diagnosis to just give the cancer a huge knock-out punch with everything we've got. It's crazy how expensive this stuff is since it isn't covered by insurance. I mean, just for a ballpark we would be looking at an average of $45,000-50,000 at all the places I have contacted. So, we are trying to decide if we can try to piece the stuff together at home for cheaper. I wish there was a place like this in the Austin area.
At 2pm yesterday, we met with the oncologist. We were pleasantly surprised that she was very hopeful and encouraged us greatly. We reviewed the PET scan together (I can post the video link here in case anyone wants to see: My PET Scan Walk through Video) and she told us that although it is in a LOT of places, it's not a ton of cancer in each of these places. It was encouraging watching the actual images vs reading the report. But, this is a systemic disease. So, for example, it doesn't make sense to go in a do surgery on my liver to pull out the cancer. If the cancer is circulating through my system, it will just find another place to land. She said the liver is a big, fluffy organ that cancer can easily make a home in. So, you attack the cancer systemically. This is what I plan to do using conventional medicine (but not Chemo) and alternative medicine. She still has the same recommendation as before: Exemestane (aromatase inhibitor) and the target therapy drug Verzenio (a newly approved CDK inhibitor). At the end of our appointment I asked her, "So, does this mean I'm not going to die from the cancer soon? I mean does this look really bleak to you?" She told us that she would expect this first line of treatment to work for a couple of years. Then, you move to 2nd line. And my genome testing will tell us even more when we get that back of other things that could help my specific cancer (which right now we know is 99% estrogen positive, 2% progesterone positive, and Her2- (but with 1+). Now, this is just from the conventional treatment side of things. One interesting thing is that the thing that originally brought me in and concerned--the right supraclavicular lymph node--actually didn't even show uptake on the PET. So, I guess it left that lymph node after the biopsy.
I am still piecing together my alternative treatments. When I get that all figured out, I will post here. I feel that the natural treatments are key, as they will help my immune system do what is was created to do--get rid of those rogue cancer cells. Whereas, the drugs I am prescribed from the conventional medicine side don't really help build my immune system--and in fact, can hinder it a bit. I am definitely feeling all the bone pains now, so I am hoping that as treatment continues, the bone pain goes away.
Thank you so much for your prayers! We will continue to post updates here, as I have been overwhelmed with texts and have had difficulty responding due to being in so many appointments, phone calls, etc. I am SO thankful though that so many people love us and care for us. I just want to make sure I can update everyone, so this is definitely the best way. I may also create a facebook group where I can post links to these just so we can have update notifications a little easier. I am so thankful for everyone who is reading this and praying for us. The prayers are most definitely felt and I know God can work wonders through our prayer. I can't wait to share with you are next PET scan which may be in a few months, which will show death to the cancer tumors!! Already praising God for the healing He is doing in me!
Prayer requests:
1. That I can eat more and gain weight. My weight has been creeping lower each day. It's hovering around 95/96 in the mornings, for example. I would like to get back up to 100 lbs.
2. That the treatments work and cancer doesn't have a chance at survival in my body. That my body is a terrible host for those cancer cells! Also, that I don't have terrible side effects and I am able to continue with the treaments for as long as possible. I currently have an itchy rash/hives all over my body and I hope it goes away quickly. Wondering if it is my body detoxing from the pet scan or just with the change/increase in nutrients I am giving my body
3. That I can find the right mix of alternative treatment that can be sustainable long-term.
4. That God would make the path known on whether to go to an alternative treatment facility, and how and where to go. Or, whether I should stay here and try to piece things together on my own.
I'll end with some happy. Photos from Father's Day...we were so thankful to get to spend last weekend with Drew's awesome parents.
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