Thursday, June 25, 2009

Yesterday's big day at UCLA

Another novel-length post ahead (sorry!)...thanks for keeping up with me. I'll try to be more brief in the future - I just really like to give the details in hopes that it'll help someone else somehow. We had a great day at UCLA yesterday! Bob and I headed down there at 6:45 am so we'd have plenty of time to battle L.A. rush hour traffic and arrive in time for my 8:30 am requested arrival time for the big meeting with Dr.Glaspy. I mentioned in a previous post that Dr.Glaspy is considered the guru, the brilliant oncologist, often referred to as the best in the country. Often times, brilliance can lead to arrogance, ego, and/or other unpleasant personality traits but I'm pleased to report that is NOT the case with Dr.Glaspy! When he walked into the room, I looked at my notepad and saw my #1 comment/question for him "tell him not to give me statistics or predictions on life expectancy - tell him I will decide that" and remembered that telling this to Dr.Barstis was successful and set the stage for the discussion. But suddenly I held my breath and decided to let this brilliant guru speak first. I decided in that moment I needed to let go and trust him, to trust God for putting me in this man's office, and see where it goes. Thankfully, it was a wise choice. He didn't discuss statistics or life expectancy AT ALL. We got right down to the business of discussing the details of this cancer, where it was found, what it is known to respond to and not respond to, and what customized cocktail the guru would be recommending for me. We discussed clinical trials too. At this time I only "fit" into one active study for triple negative breast cancer and it's for a drug called Avastin which has shown success in metastatic cancers (including breast cancer). We discussed the pros and cons of adding it to my treatment and we decided it was not appropriate for me because it would eliminate the ability to use a set of known successful chemo drugs (platinums) because of the way the study is being done, and also because in another study Avastin thus far has showed no improvement for adjuvent use in patients with colon cancer (meaning, for those whose cancers had not metastisized to other parts of the body), and there's always the chance that a new drug could negate or lessen the effectiveness of the proven successful treatment that would be given along with it. Although I won't be participating in that clinical trial, Glaspy confirmed what I had read up on regarding triple negative breast cancer trials - that the rest of them are for those with metastatic breast cancer (Stage IV - thank God I'm not in that category), and some of the drugs being studied are showing great promise and could be available in 1-5 years (in fact, a story about one class of drugs being studied was featured on NBC Nightly News last night. Another that showed success with triple negative breast cancer was reported on at an oncology conference just this month. They're still in early phase trials but nowadays that could mean new drugs becoming available in as few as 1-5 years, buying time for many of us with aggressive types of cancer shown to have a very high rate of recurrance. Long story made not-so-short (sorry!), the chemotherapy regimen that I will be having is very aggressive. It was selected by Glaspy for me in response to me stating that my goal is to "blast this f*cker* and it's rogue cells into oblivion and beyond". Glaspy beamed and responded "You're going to do just fine." :) Here's the plan: 4 cylces of: Taxotere + Cytoxan (TC), PLUS 4 cylces of Carboplatinum + Gemcitibine (CG). The TC is given every 3 weeks, and the then the CG combo will be given in two doses on day 1 and day 8 then off for 2 weeks then repeat until done. After chemo is done I will have radiation (daily treatments for a period of 4-6 weeks). I can start as early as 10 days from now. I need to have a port installed in my chest because of I have only one arm that can be injected into and the treatment plan would destroy the small number of injection sites on my arm and be quite painful and risk infection and other complications that can be easily avoided with a port. Besides the port, the final drain from the breast surgery needs to be out before we start - it should be out Friday or Monday. We are really impressed by Dr.Glaspy- not just his brilliance in his field, but also by his "bedside manner". And, at the risk of sounding arrogant myself, I dare say that I think he was impressed by me too. Why? Well...he seemed to really appreciate my spunk, my determination, and I recall a moment where my smile illicited a great big smile back from him. He even expressed that he could tell I am tough just by the early decisions I've made (bilateral mastectomy instead of single, and by expressing a desire to have the ovaries out too). I remember another UCLA doctor telling me that Glaspy is brilliant but they also warned he is "factual", "to the point", "doesn't beat around the bush". When I heard that I recall thinking to myself that I normally appreciate and respect that approach more than any other but that in this instance, where my life is potentially threatened, such an approach could scare the crap out of me and whittle away at my confidence and warrior status. Glaspy was factual, straight-forward, and to the point, but he was compassionate, confident in my ability to kick cancer's ass, but realistic about the need for multiple plans for the future paths that we may find ourselves on depending on how this first war on cancer goes. We discussed many other things - the BRCA gene mutation test (which I had yesterday afternoon while on UCLA's campus - results take 2 weeks) and how the results might impact my decision to keep or remove my ovaries...I told Glaspy they're coming out either way - results will just help me determine whether it happens in the next 1-3 years or whether I wait a few more years beyond that but either way they're coming out well before I reach 50. We discussed my intention to take an integrated approach to my treatment/wellness - combining medical/conventional treatment with nutrition, supplements, exercise, psychological therapy, guided imagery, meditation, etc. and I asked him "am I missing anything that should also be on this list?" and he said "Nope, you've got it covered." Bob chuckled. I asked if anything is off-limits (food, beverage, supplements, etc.) during treatment and he said "No." I asked qualifying questions about that since I'd heard and read that antioxidants can interfere with chemo and he said that was hogwash and that the effects of anything like that I could possibly take won't stand a chance against the chemo regimen I'll be getting. Wow. I asked him who the best holistic practitioner was and he said Dr.Hardy (who I promptly got scheduled with - seeing her next week). When discussing who would install my port, he explained how easy it is and how any schlub of a surgeon could do it and he said "even (insert name of first surgeon I consulted) up by Dr. Barstis could do it." I laughed, looked Glaspy in the eye and replied "Dr.S is not touching me." He cracked up and said "I'm not a fan of him either". Bob and I joked with him and said that had he walked into the office and just said that alone we'd have said "you're hired". haha. We were pretty stoked by this additional affirmation of our decision not to have Dr.S treat met and to instead go to UCLA. :) Glaspy agreed it makes sense for me get his regimen locally at Dr.Barstis' office (yay, no ego or politics from this guy either!) - there's the lengthy chemo sessions plus the injection required the day after so commuting to/from UCLA for that is crazy and unnecessary (double yay!). That was all before 11 am! Haha. We were down at UCLA til nearly 3 pm. Besides meeting Glaspy I was checked out by a nurse who confirmed my drain must stay in a bit longer and that my swelling is normal and healing is on track. We collected key paperwork from the surgeon's office for disability and also for a Brain MRI that I'll have next week to cover all the bases for baseline knowledge of my cancer. We visited Dr.Hardy's office, got me on her calendar for next week, and got another giant pack of paperwork to fill out - filled it out over lunch and returned it. And lastly, we spent 2 hours with a genetic counselor detailing my family history and having my blood drawn for the BRCA gene mutation test and UCLA cancer registry for research purposes. You'd think after all that a person couldn't manage to fit anything else in. Well if we're talking about ME, you'd be wrong. ;) We left UCLA, ran a couple errands and then I walked into my dentist's office at 5:30 pm for a pre-chemo teeth cleaning! I'm not a fan of the dentist but this is a necessary step because chemo can wreak havoc on the mouth. After THAT, I was officially TOTALLY EXHAUSTED! LOL

8 comments:

  1. I kiss the ground you walk upon. :)
    Exhausting? yes. Clean hair? yes. SWEET
    It's the little things ;)

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  2. Oh Julie, I am praying for you. I am so impressed/in awe of the incredible strength you are showing. Wow. I believe in you!

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  3. Julie -

    I say it again - you are awesome - a superwoman! You are doing all the right things and doing it at breakneck speed!!!

    You are the best surrounded by the best!!

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  4. I repeat what I have said before, you are my hero and my role model. Had tears of joy running down my face as I read this fantastic news. Sending smooches and very LARGE SOFT hugs.

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  5. What is there not to be impressed about? I am glad Dr. Glaspy saw how awesome you are and very happy it went well!! Kick ASS dude!

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  6. I'm on Taxotere ... all the best with your treatment.

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  7. Wow lady, I'm exhausted reading this post! Way to go. Sounds like this doctor is a great match for you. Its ass kicking time!

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  8. Go, go, go, Julie!! Your confidence and strength of character are wonderful encouragement to just about anyone trying to do anything difficult. And keep them details comin'!

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