I need new words. If I could ask just ONE MORE THING of the Universe, it would be for new and improved words that could come just even close to the MAGNITUDE of what happened on Saturday. I've made up words before - INCREDITUDE, for instance, but we already used that one. In fact it became the name of the party - my fabulous friend and brilliant hostess Jill Freeland's idea.
But to make up a word, or even multiple words for how I felt on Saturday - JUST NOT POSSIBLE.
So all I can do is thank you all. For being there. For your energy. For your kindness. For your love. And the gifts...
Unbelievable. And so helpful. I'm still at a complete loss as to how to express the overwhelming love that I feel for you all.
I have been having the week of all weeks with my MOM. I'm so glad she's here to help out, and it's been so healing to have her all to myself for the week. She's been able to drive me to all of my appointments and take me on all my errands, not to mention indulge me in a little retail therapy, all while Boyfriend can stay home and get some work done. As my full-time caretaker, he's not had much opportunity for anything work or self-related in a LONG time. So throw some intense mountain bike rides and extra sleep in with the web application work he so loves (and needs to do!) while Mom and I are off doing our own thing, and he's been a VERY. HAPPY. BOYFRIEND.
So here's the health update:
Treatment is still going well, no major increase in side effects to report from the last two weeks. Still too skinny and finding it hard to sleep at night with all the steroids, but I just try to take lots of breaks, wind down with my Tulsi Tea, and go to be early. If I'm up at dawn, I'm up at dawn. More meditating time.
Despite my efforts to keep my immune system strong, and I'm not one to get sick much anyway, I'm fighting a sinus cold and laryngitis. Although all the gabbing with Mom is certainly a contributing factor to my voice problem... And I'd like to think that some of the yuckiness that is sliding out of my nose and eyes is bits of tuber running for it's life! ;-D
And it's official: the hair is coming out. In clumps. But only on the right side. So the plan is to take it all off, eventually, maybe by the end of the week. Lots of hats, woo hoo! Boyfriend's excited, 'cause now we'll have the same hair-do!
Want to help with the party? Anything to assist Jill and Dirk in putting together this amazing effort would be so appreciated! If you have time to help set up, or connections in any of the following areas, please contact Jill directly.
We don't have a monetary goal in mind, for several reasons: We have plenty of ideas for ways people can help us if they simply have time or used items to donate. We also want some amount of what people would like to contribute be in the form of credit at groceries, markets, and complementary health care centers that we frequent to assist me in complementing the Tuber Removal Program. View the full wish list and party details here.
A lot has happened! And I intended to write everday, but I've been allowing Boyfriend to step in with major updates, because we're on the low-stress-for-Girlbert-program. And I've been trying to be a good girl, despite some peaking (drug-induced) creative and physical energy.
So this is long-winded, but hopefully broken down into enough chunks that you can all manage, whether you choose to skim it over or swallow it whole. I did attempt to put in some kind of order of importance...
Medi-Cal Continues To Give Me Seizures Boyfriend touched on this in his birthday post from yesterday, but after 7 months of hoops with Medi-Cal, I have been informed of denial due to a technicality. My case has been closed, and I will have to appeal the denial, as well as REAPPLY and start the process over to get the ball rolling back in my court again. 7 months, people. And this is after my Ninja Neurologist got me on the fast-track to approval with a letter stating that I may not be alive in a year without treatment. Unbelievable, but as always, we'll deal. We're putting our heads down with some social workers and lawyer friends, and we'll get it turned around. The squeaky wheel plan continues.
Treatment Is Going Well I am really happy to report that two weeks into chemo and radiation, I've had no debilitating side effects. All the medication I'm on has side effects, don't get me wrong, but I'm managing very well with rest, good food, a regular schedule, and loads and loads of meditation to keep my mind in order. My docs warned me that the irritation of radiation would cause some more swelling and sure enough, my seizures have increased a bit - I have one or two mild, conscious episodes a day, but only one like the episode Boyfriend wrote about on Friday, and nothing like that since. I took my activity level down a notch (steroids make me feel like Superwoman!) after Friday, and my Ninja Neurologist tweaked my seizure meds and added a sedative/anti-seizure drug for me to take at night to sleep.
My docs have all warned me that the further I get into radiation, the more side effects I may experience, as the tuber dies off (ba-bye little tuber!), and my brain may become more irritated throughout. But we're all prepared to deal - I'll get to take more naps, maybe!
The oral chemo is going really smoothly. The anti-nasuea drug seems to be doing the trick, not to mention I take my one, oral dose right before bed on an empty stomach. My only complaint is that one of the major side effects is, of course, CONSTIPATION. So despite the fact we're still pretty high raw, juicing like fiends, and I'm downing water like it's going out of style, hello hemmoroids! Good times, but not that I don't have the experience to handle it. So back to Alice I'll go, as necessary. I'll need a good cleanse when this is all over, anyway.
So just how is Au-Naturale-Girlbert and her complementary treatment plan really feel about all the drugs and western medicine? That it's the right thing for my body, right now. I'm grateful for it, and know this is the route I need to take to heal my body, and ELIMINATE THE TUBER. But I'm asking LOTS of questions. Every side effect, every medication and dosage change. And my doctors have thoroughly explained to me the necessity and purpose of each drug so that I understand the benefits for any detriments. My comfort level with all of it is quite high. My only concern is that my mind stay sharp and functional, and hasn't seemed to be an issue with all the increased spiritual practice. My mind is as clear and grounded as it's ever been, despite all the drugs. I couldn't feel more blessed.
About My Weight Many of you have asked if I'm eating. Yeah, I'm skinny. Too skinny. Skinnier than I've ever been, but I'm ravenous! But I agree that checking in at 5'8" and under 120 pounds is a bit disconcerting (haven't weighed anywhere near that since MIDDLE school!), so I asked Uber-Oncologist Dr. G, about it before I even began treatment. "I have one more question." At 6pm, the tail-end of our squeezed-in appointment to get some questions answered before I begain treatment the following week. "Sure - what's that?" He turned toward me, from the computer monitor full of my scans and charts. "I've lost a lot of weight - more than 15 pounds in a couple of months - is that the steroid making my metabolism go wild or something? I though steoids were supposed to make me gain wight. My energy has been really high, and I know they have that effect, too." "How's your appetite?" "I've been ravenous." "Have you been thirsty? Having to urinate a lot?" "Really thirsty and I have to pee all the time." "Hmm. Your blood sugar was pretty high in the hospital," he referred to his computer screen for reference, "126. Steroids can cause diabetes." The tears came instantly. "That's in my family history," I whimpered. The D-word. After watching many family members struggle with diabetes, my ultimate health goal had been to keep myself from ever having to hear a doctor tell me I had the D-word. Cancer schmancer. Dr. G shook his head reassuringly. "Dont worry - medically-induced diabetes is totally reversible. But we'll check your blood sugar in your blood tests anyway to make sure." My blood test the next day showed my blood sugar back to normal. Whew.
In the meantime, I shared this story with my brother, who shares my ultimate health goal of avoiding the D-diagnosis. Perhaps channelling our Grandma T's (sometimes inappropriate) sense of humor, he exclaimed, "Oh my - 118 pounds? Brain cancer is like the best weight loss program ever!"
And we laughed, because we're Tomlins.
About That Trip Up North... Boyfriend already touched on this in his earlier post, and I've been meaning to, oh, but for the time of really doing the words justice!
Here's the bomb: Following my treatment at the end of November, we'll be moving up to Marin County, CA - the lovely town of Fairfax, to be precise.
So you remember that trip, over a month ago, now? I experienced a profound shift while visiting our dear friends in Fairfax, and sensed an overwhelming connection to the place as a healing center. A mecca, even. Upon driving into town the first time, we came upon healing center after local market, after meditation retreat center after organic restaurant after holistic health care office, and my only thought was that this was the place for me. Seem abrupt? All I can say is that it immediately resonated with me at such a high level, it couldn't be ignored, and the 7 days we spent there only confirmed what I knew in that initial moment. Boyfriend and I both experienced a huge shift in our relationship during our stay, and we're not attributing that to any accident. We also deepened our relationship with the dear friends who put us up for the week, and can hardly wait to live in their community. Not to mention a much better proximity to a major University Hospital, more dear friends, and the Neuro-Accupuncturist I will continue to see throughout my healing journey. The utmost importance has been placed on my health, increased autonomy, adjacency to nature, proximity and access to like-minded, spirit-driven people, continued healing, and happiness.
Friends and Family Visiting I've just wrapped up well-timed visits from friends and family this week. A great girlfriend from Wisconsin was here over the weekend with her little boy, and such a treat to spend time with them - it'd been over a year since I'd seen her last. The magic of spending time with children - very healing. Then my baby cousin (okay, so she's 24!), whom I haven't seen for over 12 years, and her boyfriend stayed with us Wednesday night, and I couldn't be more thrilled to see her and connect with out-of-touch family at this time in my life. The universe continues to astound...
Relief Is On The Way In the form of more family coming in to help out, as Boyfriend and I continue to manage schedules, work, and appointments. We couldn't be more thrilled that my mom will be here next Tuesday for eight days to help out with driving, erranding, cooking and whatever. Not too mention lots of hugs and love. Just the relief of not having to drive me to treatment everyday will free up Boyfriend's schedule immensely to get some much needed work done, which will help our financial situation tremendously. Then Boyfriend's parents will be coming on November 4th for about two weeks, and we're are thrilled for the company and help. They have lots of friends in CA, too, to they're looking at it as a double treat. Can't wait to see you all. Thank you, thank you, thank you.
That about wraps it up! Please keep in mind that I share my journey on this blog because I believe it is a powerful tool to help me heal. Your traffic, your comments, your positive energy - I FEEL all of it, and be assured that what you put out into the universe in a loving way will come back to you in amazing and profound ways. So leave your love here, and you'll heal yourself...
Earlier this week we found out that Medi-Cal denied Girlbert's application on a technicality. Happy birthday. Yes, we can appeal. Yes, we can submit a new application so all is not lost. But the cost to her in time and effort was enormous so she was a bit devastated, had a seizure, meditated, and tried to grasp the technicalities of what to do now. And of course, her creditors phone calls just keep coming. So the situation is dire but not desperate.
Today Lisa woke me with painful cramps and joint pain in her knees and feet. Maybe it's the medications, maybe it's overuse, but whatever it is the pain brings the risk of seizure. But for Lisa, it was a wonderful morning, looking out our window seeing the trees just touched by the new day's light through the mist. It was wonderful because while we had another exausting day to look forward to, for a few moments we could just enjoy each other's company. It was wonderful because it was her Birthday.
The determination against any odds to be positive is what makes Lisa shine. While it might seem irrational and delusional, she knows only too well the situation, with daily seizures, now near constant pain, risk and reminders at ever turn. Yet looking around the waiting rooms we now frequent, the grocery store, or walking down State Street, Lisa leaves a wake of people whose days have been brightened by her Shiny, Sparkly Energy.
Today, there was another side to her. She wore her "What are you grateful for?" t-shirt from Cafe Gratitude. We bought cupcakes from the Crushcake Cupcakery and she went to every technician, nurse, and doctor she has and explained how she could not possibly express the extreme gratitude she has for everything they have done and continue to do. And she passed out cupcakes. And when I compare how she looked then to how she looked recieving this beautiful flower arrangement (and we haven't afforded ourselves flowers in a long time), I'd say she beamed with the flowers but she was simply overpowered with joy giving away cupcakes on her birthday. As she said this evening: "Are you happy? Because that's all I care about." That is Lisa.