Monday, June 22, 2009

Much anticipated, and somewhat feared Monday gone right :)

Long update for a long day... This morning I was a bit alarmed that the last remaining drain was still filling up rapidly - something it started doing as soon as the other two drains were removed. I know it has to be less than 30 cc in 24 hours before they'll remove it. The day they removed the other two, all three were below that threshold, in fact they were at about 20 cc. But by Saturday morning the amount started climbing...so much so that by Sunday night I figured out there was 80 cc or so for the day/night. UGH. I called the nurse at the surgeon's office to report it and ask if there was any reason to be concerned - she said it is totally normal and it's compensating for the other drain being gone on that side. She said that if it tapers off to 30 cc /day or less by Wednesday it can be removed. If I'm at 80 or so now, I'm guessing this sucker won't come out til Friday. Oh well. Besides mild panic about my drain situation, we had a pretty big day planned. In the morning Mom and I met with an oncologist here in town, Dr. Barstis, who is part of the UCLA team and has an extention office here locally. I had a laundry list of questions but had to first inform him that I did not want to hear any statistics or predictions about the time I should expect to live - I told him, as I choked back my tears, that I WILL DECIDE HOW LONG I LIVE as far as this cancer business is concerned. I paused, expecting him to cop an attitude (as so many doctors would after a proclamation), and then sighed with relief when he responded "I don't believe in statistics...everyone is unique, and I agree with you that you will decide...." Yay! OK, once THAT was out of the way, I braced myself for the ego battle I also had anticipated - whether this guy would be willing to administer treatments to me under the direction of another doctor - the UCLA director of oncology in Westwood. You see, oncologists are like many other kinds of doctors in that each has their own way of doing things and set of beliefs. Two people with the exact same diagnosis could get completely different treatment regimens/drugs, sequence, etc just because of the experience/beliefs of the oncologist they go to. Thus, the patient needs to be educated in order to know how to choose which doctor's recommendation/regime to go with. I'm no expert at chemotherapy, but I'm a quick study and have done my homework on the doctors, the hospitals they're affiliated with, etc. And, even though I've never met the UCLA doc in Westwood, we are sure we plan to go with what he recommends, based on his reputation, the referrals, and other factors. So, before I could break the news to Dr.Barstis that we were there to ask if he'd administer the program that the other doctor recommends (so that I won't have to endure the awful commute back and forth between here and the UCLA center in Westwood), I was shocked to hear him say "I've looked over your case and I want you to know that we want to help and we think Dr. Glaspy should call the shots on this one." (Glaspy being the head honcho at UCLA that we're meeting with on Wednesday). This doc knew I was meeting with Glaspy this week - since they're both part of UCLA they can access all my reports/tests/consult and physician notes/appointments scheduled. I turned to my mother and got a kick out of the giant smile on her face....which matched the one on mine. So I said "So, you would be comfortable teaming with Dr.Glaspy and administering the treatments to me that he recommends but doing so here in this office close to home?"...and his response was a clear and resounding "yes, absolutely". He went on to say that Dr.Glaspy is brilliant in this area (aggressive breast cancer, triple negative, etc.) and that he believes him to be the best in the country. Oh heck yeah!!! Woo-hoo! Yeah, baby!! :) Doc said I should do very well - he commented on how great I've bounced back from this MAJOR surgery (and of course mom had to chime in to inform him I've looked this great since the day after surgery - love ya mom!) and reminded me that the cancer is out and now the treatments needed are protective - to eliminate any remaining cells circulating in my body to prevent further growths from establishing. He expects I'll have both chemo and radiation (as the surgeon predicted), and he explained why the radiation administered here is actually more advanced than the equipment down at UCLA's main campus (though they're in the process of getting their equipment updated it wouldn't be done in time for my treatment) - so I guess I'm lucky I live where I do since radiation is a daily treatment over several weeks. Woot!! My friend and neighbor is an infusion nurse at this local UCLA cancer center where we met with this doctor and I'm so excited that I'll be able to get treatments locally and have her smiling familiar face there when I go in and have someone I personally know and trust to ask questions if things come up. Treatment would start 4 weeks after surgery occurred - for me that is the second/third week of July. I'll have a port installed in my chest 1-2 weeks prior to that and Dr.Barstis gave me the name of a doctor that he felt does the best port installations so I'll be checking into getting that scheduled since that would need to be done 1-2 weeks from now. The port is critical for me especially now that I only have one arm that can be injected into (my left arm is off limits due to risk of lymphedema now that my lymph nodes are gone on that side). It would be installed under the skin up high on my chest and would be used to hook me up to the chemotherapy infusion bag(s) for the treatment process. It'll be a minor surgical procedure to install it, under local anaesthesia. It's kind of gross but it's the best approach for me so it is what it is. The actual drugs/treatment I'll be getting will be determined by Dr.Glaspy. We meet him on Wednesday. Dr. Barstis agrees that a holistic approach is critical for an effective fight. He approved of the vitamins I bought at UCLA and showed him to be sure there weren't any ingredients known to be detrimental during chemo. This prompted him to suggest that I get an appointment with Dr.Hardy at UCLA - she's a holistic doctor that is well known for her work with cancer patients in areas such as nutrition, supplements, and eastern medicine to supplement conventional treatment. Turns out that the vitamins I bought are the ones that the breast cancer boutique store clerk said were "recommended by Dr.Hardy" - at the time I had no idea who this Dr.Hardy was that she was so excited about when she sold me the vitamins. LOL. Tomorrow I'll be calling Dr.Hardy's office down in UCLA to set up an appointment. On a related note, I've been reading Bernie Siegel's books on the mind-over-body phenomenon and what you can do with meditation and visualization to enhance your body's healing process and last night I went to his website http://www.berniesiegelmd.com/, and found that his center is in Connecticut, not far from where my family is and where I grew up. They're doing a retreat for couples soon but there was no date posted yet so I sent them a note. Today I received a reply that they're planning it for the first few days of October. It just so happens to be days that I already had blocked off for vacation since that is when Bob's vacation time is - so they said they'd put us on the list and send me the flyer with details as soon as it is printed so we could sign up for it. Woohoo! I probably won't be done with treatment by then but I'm sure the docs can work it out so that I'll be between treatments so we can go. I'm so excited! It seems to me that everything is just coming together...I just KNOW I'm in the right place at the right time and that I have the best team possible working with me to kick cancer's ass. Between my determination, my outstanding medical team, and my amazing support network (you! :)), I am so ready to fight and win. That was all before 11:00am! By noon we were back home and welcoming my dear friend Nikky and her adorable 11 month old son, Junior, to our very first in-person meeting and playdate :). Nikky and I met online through a pregnancy support group and became friends quickly since we were both put on bed rest. She lives in northern CA and was down visiting some family and set aside this afternoon to spend it with us. We're so glad she did because we had great fun watching Cooper and Junior play together. I'll be posting pics from the playdate on Cooper's blog in the next day or so. Needless to say, I'm totally exhausted now. Once I post this, I'm taking a nap. Tomorrow: Intake appointment with a cancer support organization that hosts support groups, more rest than today, a bunch of phone calls, and writing thank you notes. :)

12 comments:

  1. I am SO happy to read this! I have a big smile on my face to read that you had such good news. One thing after another just seems to have fallen into place for you. If you're stuck dealing with this, you at least deserve that much! And I think that after today, any doubts you may have had about any of your doctors or treatment options should be out the window. Sounds like this Doc will be excellent and confirms that the others you have picked are also top of the line!

    I am not HUGE into holistic medicine, but just after studying hypno-birthing and having a wonderful experience with it, I truly do believe in mind over matter and visualization to help with pain relief and promote healing. I will have to check out the website you listed.

    Oh Julie, I am just so happy for you!!! If I were closer I would have to drive and visit just to give you a giant hug!!!!

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  2. Yes it does really sound like things are coming together for you ... in a real good way.

    All the best to you ... I'm really happy for you!

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  3. I am so glad to hear that everything is headed in the direction you've chosen! Your strength and determination is amazing, you're a true inspiration. I hope that if I am ever faced with such a serious situation that I can handle it half as well as you are handling all of this!

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  4. Julie -

    I am ectastic about your day!!!!!Talk about everything falling into place and on your terms!!! I am just thrilled for you. I amso have a big smile on my face!! Your team of Drs. become your second family and just as I have, you have the best looking out for you.
    You are incredible and I cannot wait to meet you!

    I repeat my mantra - I had cancer, cancer did not have me!!! Knowledge is power.

    Michele

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  5. I am super impressed with you! You get it done lady!

    Hope your recovery is going well and of course, sending prayers and thoughts your way.

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  6. Julie,
    All good news!!! You should become a writer. You do a great job communicating via the blog.
    I love reading your updates, and I'm inspired by your determination and strength! You are in the right place at the right time... we all are!
    Cindy

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  7. Mediports are awesome and I think getting more and more standard with chemo. My dad had one put in after going through chemo for a year without one and what an amazing difference! So much easier!! Another girlfriend in San Diego is going through chemo for leukemia and she said it was easy and makes chemo much simpler! You are going to do awesome!! Like always!

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  8. You amaze me!! You outlook is totally awesome, and if you weren't as proactive as you are, I'm sure it (alone) would get you through this mess!!I'm so glad I got to share (in person) in your good, fortunate day!!! :)

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  9. Re the PORT: Make sure you have it "installed" on the side that doesn't interfere with you and Bob cuddling in bed :-)

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  10. So gald you put together such a kick ass team! Things are going well becasue you are making them go well!

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  11. Hi Julie,

    I'm so sorry to hear of your diagnosis and all that you are going through. From the little that I know of you, I'm sure that you can kick this thing. You're strong, you're a survivor.

    It sounds like things are going well and your doctors are awesome! That's a HUGE plus!

    One thing I want to tell you about is a book called "Eat to Live" by Dr. Joel Fuhrman. He talks quite a bit about cancer in his book, and how you can increase your survival rate once you have cancer through your diet. I thought you might find it useful.

    April

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  12. What awesome news to read today! Yes! I'm loving your Dr. Barstis, Julie! I'm so glad there were so many positives today; let's keep 'em rolling in... :) I know a few people who have used various Eastern treatments/interventions and have had great results (acupuncture, herbs--wasn't for cancer, but pain relief). Get some rest, girlfriend! You are one busy lady!

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