My previous post sat for 12 days before I published it. When one writes about one's life in real terms, others who have a role are exposed. Is that fair? I truly don't know what role fairness has in life....fairness as a concept, an ideal...has utility. But I have no means by which to really understand it. Right now, life feels exceptionally unfair on a few fronts and I am trying to cope with the new feelings developing tonight. My head aches. My belly has some pain. It's been a tough day. As I left the counselor tonight she summarized what she believes is happening: "you are suffering from a broken heart"...we both had tears and I acknowledged she is correct. The chapter of heartbreak will not end in an instant...and I will return to the tiresome topic. Note to self: it's getting tiring.
I actually had written this post about my Stanford appointment the night I posted the last...but my ailing phone I was working on shut-down suddenly when the battery was low, though not critically so (its new issue). ..and I just learned what was written is lost....a theme I am tiring of (loss). The Stanford appointment of May 24 was important.
Daughter Hannah is now done with her semester at HSU and thus was able to come with me and drive. It takes about five and a half hours to drive down in good weather. We got there on time to valet park & sit only a few minutes. The first professional in the room took vitals, then the resident doctor came & introduced herself and her colleague, a grad student. The doctor followed. Hannah asked Dr. Dorigo if she could record our appointment which was a great idea. That said, it's funny, but I remember well what was discussed.
I explained to Dr. Dorigo that I stopped the chemo at the point I felt my body indicating saturation of chemo. He knows I have gone in for high dose iv vitamin c all the while doing chemo - all rounds - in an effort to maintain a quality of life I want, so I might one day accomplish my bucket list goals (another topic: amending the bucket list to reflect the inability to persue dreams with the one I wished to). He genuinely understood. He did note my great response to Doxil & Avastin, which is undeniable. But my poor body. [My dear body. My dear imperfect and ultra-durable, adaptive body...I love you. I am so sorry to have put so much toxic materials into you in order to kill off that disease you let shack-up...it had to go! Thank you kindly...now please respond well to our non-toxic-to-healthy-cell cannabis treatment & let that shit go again, ok? ] ...my poor body told me it was going to have lingering effects if I kept going after the mouth sores gave me a glimpse of suffering.
I had received a call from local oncologist Dr. Richa back in April. The voicemail he left was upbeat...gleeful. He spoke of the Foundation One results and very good news...a pill. I knew I would return to Stanford and have the ordering oncologist, Dr. Dorigo, explain findings.
Dr. Dorigo gives talks, researches, publishes, performs surgeries...he's an incredible team member & I both told him so and thanked him. He is a gyneoncologist. He explained to me the tumor material itself was sent from Syracuse to the lab and four genetic abnormalities were identified. One was the BRCA ...and for that there is a parb inhibitor drug, self-administered orally. He lit up when discussing it to the point I felt it should be acknowledged. It inspired him to explain fully his glee: 30% of women respond to it and it has worked for some for years. Side effects? I had to ask. He said some women experience excessive fatigue, some vomit or get nauseous, some get headaches...& to him these symptoms are manageable. Hmm. Does not sound great...but another possible tool to have in the background waiting to be used. Dr. Dorigo was also excited because to be eligible to use the drug, one must have completed three previous treatment courses, which is my realty. He went on to say he felt the drug should be available as a tier one treatment for its utility is that good.
I then fully explained the Rick Simpson Oil (RSO) treatment regiment...how I built up from a smaller amount to 1 gram per day. Dr. Dorigo expressed his support for cannabis use for symptom management and added it does not kill cancer. I replied that I understood he would not be able to endorse a treatment that did not have the research & double blind studies. I let him know that I knew with certainty my CA 125 was 25 then post chemo shot up to 51. I also told him of the spotting & Dr. Basch finding a tumor.
I was thinking and digesting all the while Dr. Dorigo talked. I told him if my CA 125 is down, I will keep on with the cannabis oil treatment until it is not productive to do so. I would learn more with scan results and would use those two tests to track progress of treatment just as had been done w chemo tx.
Assuming I would eventually want to try the Olaparib, Dr. Dorigo asked me to get another ct scan w contrast. I agreed and all felt it likely could be done the next day. I said I would like to get a CA125 test done the following day, too, and I called and got it arranged.
Before the trip, I had called the integrative medicine clinic and was lucky; as hoped for I got a cancellation appt. for two days after the Dorigo appt. The social worker had successfully arranged lodging for us at a nearby apartment complex, making it possible to stay the three days without hardship. So the middle day had me get a blood draw and a ct scan w contrast. Interestingly, the big, new ct machine used did not require me to drink the same shakes as usual, not as long of a fasting time, either. Different. That evening, we hung out at the complex's hot tub. It was very nice to have Hannah's dear friend and closest thing to a second daughter, Jannette, come and visit with us. Dear Jannette had flown to Syracuse to see me after my surgery & before my chemo. She was there the day I had my port installation surgery. We love each other.
The appointment with the integrative doctor did not provide as much info as I had hoped. Initially I thought I was scheduling an integrative oncology appointment, but it is integrative medicine, like my own Dr. Basch's practice. The doctor had reviewed my records. She gave the recommendation I do not combine cannabis treatment with Olaparib. Interestingly, Dr. Dorigo had stated he felt I could take them together. She was failing to consider the side effects and how cannabis would counter them. Her thoughts are worthy of further contemplation though: cannabis taxes immune system and so does Olaparib. She feels that might be too hard on the body. Again, though, the high dose iv-c assists w taxing the body. It is duly noted that this recurrence had me tackling a gland infection, shingles, bladder & kidney infections. And the vitamin c arguably has not prevented these.
Meanwhile, Dr. Dorigo's nurse called about Walgreen's beginning the process of insurance approval of the Olaparib and to expect their call. I inquired about the CA125 test and she had the results. 25! 25?!? "Well," I continued, " I know for sure I will continue to use the oil at this time. I will not begin Olaparib at this time." She said she would note my chart. I asked that Dr. Dorigo call with the scan results.
We headed for the City with me elated over the CA 125 dropping news. A sign the RSO is working! We met my dear friend who moved to Texas from CNY around the same time I left. Dan had let me know he was at his dear old friends home in the Bay Area days before and it seemed rather fortuitous I was heading down & meeting up would be possible. We had some eats in the Haight together and then a stroll & smoke in Golden Gate Park. A few hours total and we parted ways. Hannah and I shopped at an outlet mall for Chloe's upcoming birthday. We got so tired we had to secure lodging in Ukiah!
That weekend was granddaughter Chloe's sixth birthday celebration. She is a delight to my heart. I love her deeply and dearly. Doing things with her...little things...any things...brings me founts of joy. When asked to name reasons to live, being able to further my relationship to her and other grandbaby Karli are at the top.
Purpose. Life. Painfree. Cancerfree. My vision.
I heard from Dr. Dorigo the following Tuesday. I think his calls' surprise factor remains. He said that all of the tumors were larger...nearly doubled in size. He spoke of tumors on the liver, spleen and honestly...I was going numb, in shock, while he said more. He asked if I had pain. Not really. He said he was not overly concerned with size. I reaffirmed my plan and he said that he understood, it was fine, to keep him posted. During the appointment, he stated it would not be a problem for me to do the oil tx for a few months & before accepting Olaparib if the oil did not produce desired results.
For the record, I'm making decisions as they come. I continue with the RSO. I don't like the degree of incapacitated I get. And its becoming increasingly difficult to care for myself. I continue to work on emotional issues. I need more support in a very serious way and thus far, I don't have a viable plan. I do go back and forth about my plight. I sometimes feel like fighting til I win. More often lately, I feel like dropping off an embankment and unburdening those few in my mix. I'm unwanted by the one who I have loved. I stop. I give thanks for processing a great big wad of hurt today. I asked questions and heard answers. It changed me. I do not feel the same. My desire to understand landed me a better understanding...on several fronts. It's a different understanding than that I sought though. I'm reeling. May I rest in peace tonight, for I need to. Tomorrow morning, Carl ftom Resolution Care will come for spiritual guidance. Carl is safe and real with me. We will take me further through my journey of emotional pain....in an effort to provide a healing clime.
Next: what happened the day after the scan results were revealed?
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