In early March I had another ct-scan. This was done a few weeks earlier than planned. I've been having horrible lumbar spine pain, different than the tailbone pain which has since resolved. I've actually have had this lumbar pain since the holidays, but had just chalked it up to traveling. In early February I started having this pain continuously and it worsened. At this time I also developed complete numbness to the anterior aspect of my right thigh. It's especially annoying when I feel the need to scratch my leg but don't feel any relief when I do scratch it.
The only idea I ever have that my tumors have increased in size is back pain. And so I wasn't surprised when Dr. D told me the immunotherapy wasn't working and that the tumors had grown, especially the one in my right iliac crest wing and a new one was in the stomach, one around the pole of a kidney and one at the base of my left lung. I tried really hard not to cry when I heard the news, but I was completely devastated. I had hoped so much that this treatment would be the one that would shrink the tumors. Dr. D wasn't as hopeful as she has been in the past. Basically she said to me, "You ultimately know the outcomes of this disease" as she handed me a copy of the CT-Scan results. She is a good doctor, but treats me more like a colleague than a patient.
The options she gave me were to try a PARP inhibitor which has been very promising in BRCA positive patients. I'm BRCA negative, however there is a 20% chance this will work in BRCA negatives. The other option was start weekly IV chemo, one that she offered would take my hair. Um, that isn't an option. The bald part isn't so bad. It was the growing it out that was awful. And if I'm going down, I'm going down with my hair. Call me vain. So we are on to the next treatment with hopes it will be the one that will dissolve the tumors. Given that I'm going to be traveling a bunch in the next 3 months I opted for the PARP inhibitor. Dr. P mentioned this treatment when I saw him at Mass General. When I left Dr. D's office I felt like my time was dwindling and that I really needed to get my affairs in order, which I do need to do regardless.
I cried several tears that day along with Lauren and my parents. I'm so grateful they were with me. But then we dried our tears and set out to do some shopping. I was sure I'd cry myself to sleep that night, but I didn't even shed a tear. That night as many other times over the past nearly 4 years I felt an incredible sense of peace and comfort. The prayers of so many were answered and have been answered as I've been able to carry on my daily routines (with the exception of a hard workout because of the pain.)
Last Tuesday, regardless that my insurance doesn't want to cover the PARP inhibitor because I'm not BRCA positive, the drug company sent me 2 weeks of treatment which I started. That night I broke out with hives. My awesome neighbor found me some benadryl from another neighbor and after a few days the rash cleared up. But what hasn't cleared up is the awful metallic taste that I have when I drink water. I love my water bottle and drink a ton of water every day. I have found however that adding crystal lite helps this problem as well as peppermint tea. This treatment is so new that Dr. Dan has never even used it. We looked up the side effects and 39 percent of people get dysgeusia or alteration of taste.
I started thinking that if the presacral mass, which actually shrunk 9mm on this scan, from the radiation I had in the Fall that it could help with the mass on the iliac crest. I'm pretty sure this is what is causing the back pain because it is on the same level as the back pain. Plus it is pushing on the artery and the nerve, which is causing the numbness to the thigh. So I made an executive decision and made an appointment with Dr. Q.
This past Friday I returned to Boise for my scheduled appointment with Dr. Dan. He is so optimistic and every time I leave his office I feel that I have several years to live. He tells me we have yet to run out of options. He also didn't feel that the spot near the lung was cancer. That was reassuring. He was impressed that I had already made an appointment with Dr Q and told me he was going to run down and talk with her before I saw her. She of course is super positive and felt another round of radiation would help with my pain. Typically she likes to do radiation over a 5-6 week period. I don't have that long. In fact I told her I only had a week. She said she could do that but would rather do it over 2 weeks. Even the social worker Diane was involved and got my plane ticket change fee waved. I LOVE St. Lukes MSTI. The staff is incredible, sincere and they feel like family. The feeling is completely different than in AZ, where the warm family feeling is definitely not there.
I had my first radiation treatment late this afternoon. I feel just fine for now, with the exception of some killer back pain. Given I'm having three times the dose as typical I'm sure the side effects are right around the corner. We are also radiating two other small masses that I can feel in my pelvis which drive me crazy, especially because when I found the one around my pubic bone in June it was tiny (and Dr. Dan brushed it off as scar tissue) and now it is close to a centimeter.
And so the fight continues. I haven't given up and I won't until I can't hang on any longer. The research and medical professionals would say there is no hope for a cure and there likely isn't, but there are still options. I hope it's this PARP inhibitor and I'm one of the 20 percent that it works on. I still believe in miracles and hope for one. When I read my scriptures each night, it's amazing how a verse or sentence will catch my eye that gives me hope and faith to keep hoping for that miracle.
Saturday was the General Women's Broadcast from SLC which our church has every 6 months. The first speaker talked about my favorite scripture, "Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge him and He shall direct thy paths." Every time I think of this scripture I focus on the word trust. She however focused on the word lean. Sister Cordon said, "When we spiritually lean to our own understanding, we lean away
from our Savior. If we lean, we are not centered; we are not balanced;
we are not focused on Christ." I just love this. It gave me new insight into this favorite scripture of mine.
In the same conference Sister Burton said, "But I know and I believe that thou are the Christ the Son of God. Sometimes we have to remember in Whom we trust; some One that loves us perfectly and wants nothing but the best for us. We may not understand everything, but as we seek to follow His loving example, we will find the peace that we are seeking in our lives."
I often think of the many people I've been able to meet, the opportunities that have come my way and the characteristics I've developed over the past nearly 4 years. And it's all because of a diagnosis of ovarian cancer. It is in these thinking moments that the why questions are answered.
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