Yesterday was my last day of radiation treatment! And what a day it was. Just pure joy, thankfulness, another undescribable, words-just-can't-touch-it-kind-of-day. But of course, I will haplessly attempt it...
I picked up celebratory cupcakes at Crushcakes Cupcakery (they were fabulously accomodating, again!) for all of my my now dear friends at the Cancer Center of Santa Barbara, Santa Barbara County Clinic and Pharmacy, and other doctors. As I went to my final treatment, last day appointments and picked up my new assortment of medicine for the steroid taper-down (WOO HOO!) that will occur over the next month, I found myself sad to say goodbye, but hoping the next time I see them is at the grocery store, in a restaurant, or the theatre. Where I will run up and give them hugs, and they'll wonder who is this girl, all healthy, and with hair?
So what's next for Girlbert? Well, there's certainly no going back to normal, since there never really was a normal to begin with.
But I tried as best I could to allow myself to do as much of NOTHING as I could muster today. Boyfriend, too. But with all the activity, the schedule of having to be SOMEWHERE, six days a week, often changing multiple times a day, with a moment's notice, there's certainly a lot of catching up to be done. Medi-Cal denial still waiting in the wings. Social Security paperwork and requirements to tidy up. Charity applications to fill out. And the regular stuff of figuring out how to cook, clean, and work to pay rent and bills.
My next MRI and doctor follow-up appointments aren't for over a month - after the holidays. My doctors tell me that although the chemo and radiation have stopped, changes will continue to occur over the next month, and so a picture and any discussion aren't necessary until then. So more wait and see. But time to rest and enjoy the holidays, which is a tremendous blessing!
And finally, some more attention for my horse. I might even read a book or a magazine. Or take a picture of a bird. Let the real healing begin.
My dad writes of this 1978 photo, "...both you and your dad had hair."
How cute are we?
I'm certainly not missing my hair or saddened by the loss of it, thanks to a number of factors:
The first being that I find it quite exhilarating that I can get in and out of the shower, dressed and be out the door in 15 minutes. That's crazy, even considering the fact I've always prided myself on being a pretty low-maintenance horse girl, comfortable popping a ball cap over a pony-tail most days. Even when I wanted to get a bit gussied up, I was a 45-minute-max, shower-to-door-girl. No all-day, multiple-hour beauty routine for me. But 15 minutes? With a shower? Wild!
The second, of course is that Boyfriend continues to be fascinated by my baldness, loves to shave the left side of my head to help me keep it even, and tells me how cute and sexy I am, ummm, pretty much every opportunity he gets. Feels good. And I continue to feel like I won the Boyfriend lottery... How is it that a girl could be so lucky? Sigh.
BUT - I have become OBSESSED with other people's hair. I find myself staring at peoples' hair, wondering, Should I try something like THAT? After years of KNOWING my own hair, and what I think works for me, my face, my hair type, color...suddenly there are SOOOOOOO many options. And it would have NEVER crossed my mind to cut my hair short previously. NEVER. I'm going to be forced to try some short styles as it grows out.
What about highlights? And why not some fun with colors, too? Blonde? Red? Things I would have never entertained previously because the committment would be too permanent on longer hair. People have also told me it may very well come back different - curly, thicker, finer, straighter. I can't wait to see what I have to work with!
So in light of the fact that Monday is my LAST DAY OF RADIATION, I'm open to suggestions. Because it's going to start growing back soon, and a girl has to think about these things!
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.
Enough with the green wig, right? Did she do it? Did Girlbert shave her head?
And nearly a week ago, at that. But then I went and got all sick with a broken immune system, and have been useless to edit video and write anything to do it justice. And you have to do something like shaving your head JUSTICE, am I right?
Because it's not everyday that somebody shaves her head BALD. Even Britney only did that once.
Extra special thanks and so much gratitude to the entire staff of the Hans Wolf Salon and Spa in Santa Barbara. Ryan is the man responsible for the Extreme Girlbert Makeover a couple of months ago, and he did the head-shaving honors, joyfully declaring, "I've always wanted to shave a woman's head!" So glad to be of service. And Colleen Elizabeth fixed up my eyebrows so that my face would be up to the challenge of pulling off BALD.
I finally get a good, clear view of my biopsy scar. Kinda Franken-like, just in time for Halloween, I guess.
And then my brother shaved his head, declaring, "I can't let you be the only bald Tomlin!" We've never looked so alike - obviously! Boyfriend, of course, shaves his head anyway, so I kinda feel like the hot, bald chick now. It helps that he tells me that every five minutes, of course...
My life is a fairy-tale.
If only I could click my ruby-slippered heels together and have each of my favorite bald men on either arm...
Despite all my best efforts to stay unexposed and rested up, the chemo and radiation have supressed my immune system enough that I have a pretty good chest cold. No worries (or temperature, which can be a biggie for a person in my condition), though, I seem to be clearing it out, and should be over it in no time at all. Longer than the average person, obviously, but I'm on the up and up.
But my docs want me wearing a mask on my face in public, (the better to cover the steroid fat-face and acne, I say!), hand sanitizer in my back pocket, and be really cautious. As in, do you really need to go into CostCo today? Probably not...
But we did have some health and banking-related errands to do yesterday, so I got to get out of the car and go into some places. And you wouldn't believe the looks! One of my favorite stops was to the bank for a deposit, and walking in wearing my hat, sunglasses and mask - you should have seen all the teller's faces! They asked, "Can I help you?" through some very intense looks and gritted teeth...fun! "Just need to make a deposit," I said, taking my sunglasses OFF (sheesh) and digging through my purse. They remained ready to push that button.
I did notice that every other person I came across did a double take, but I'd have done the same (and probably have), in the past, never thinking there are people out there with compromised immune systems that have to be really careful during cold and flu season, not to mention this swine flu thing.
But here's the cake: Toward the end of our afternoon errands (we'd already deposited Mom at the airport, so SAD to see her go - such a good time with her!), we decided to pull over at a coffeehouse on State Street and let me run in and get a couple of cups of hot tea, Boyfriend staying in the car. So I pulled my mask on, hopped out and opened the coffeehouse door to THE. DIRTIEST. LOOK. EVER. The dirty look was shot by a customer who'd turned from the counter to watch me step inside. I smiled through my mask, he was probably unable to see it. He turned away, finished paying, the woman he was with standing off to my other side, waiting for their order. Then he turned back to me.
"ARE YOU CONTAGIOUS?"
With what, the swine flu? Like I'm just walking around with the swine flu? 'Cause I heard they all can't get out of bed, or are in the hospital.
"Actually, I'm a cancer patient, and the chemo and radiation is suppressing my immune system, so I'm wearing this (pointing to my mask) to prevent myself from being exposed to anyone else who might be carrying something." Like yourself, sir.
"Humph," he frowned and walked past me.
My eyes followed, and the woman he was with looked ABSOLUTELY. MORTIFIED.
I turned back to the counter, and all the teenage coffee shop workers behind the counter were significantly wide-eyed with disbelief at what they had just witnessed. In unison, "What can we get you started?"
"A cup of chamomile, and a cup of jasmine tea, please."
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.
Birthday: The Extended Version My Boyfriend is Better This Probably Ruins All Future Birthdays
Lily Tomlin was scheduled to do a couple of shows in Santa Barbara the weekend after my diagnosis in May, but they were cancelled due to the Jesusita Fire that was raging through town. Shortly after, I noticed that the shows were rescheduled for October on my birthday weekend, and I thought How fun would that be? I mean, she's an ICON, I've always found her hysterically funny and we do share a last name. Despite the extravagence of buying tickets to go see a major comic in a Santa Barbara venue (Ha! We're POOR, remember?), I may have mentioned a time or SEVEN that I thought that'd be a fun thing to do. Without any real seriousness.
So I've already told you about my birthday. Low key, treatment, doctor appointments, cupcakes, plenty to do, thrilled at the idea of an early evening of homemade pizza and a movie with Boyfriend. It was perfect.
But upon waking the day after my birthday, Boyfriend informed me that there would be an extended birthday surprise for me in the evening, so we would need to stay on schedule to be back in Santa Barbara, fed, rested and gussied for a bit of a late evening. "The timing just didn't work out for yesterday, I'm taking you to a surprise tonight." Huh. No one had ever surprised me with anything for my birthday before. Really. How curious and exciting!
So I stayed on schedule, stayed low-key, took my meds when I was supposed to, and we were headed back to Santa Barbara in dressy duds at 6:30 for an unknown, surprise something. We parked in City Lot #9, and Boyfriend led me, teetering in heels to the Lobero Theater.
Audible gasp. "HERE? No, no, no..." I stopped and turned to see his spreading grin at my realization. "HOW did you do this? This is expensive..." "I made a friend at the theater, M, explained the situation, and she got us in." He'd used my brain cancer, birthday and my Tomlin cards. How many times does one have three cards for ONE situation? A genius, that guy. "And we're going to the pre-show party, too, so let's keep moving..."
I got to meet M and the executive staff at the Lobero to express my thanks. So gracious. One of the staff members even informed me that I could write a question for Ms. Tomlin on a card, and she may answer it during her Q&A at the end of the show. My question? Would you pose for a picture with a fellow Tomlin?
Why not shoot for the moon, right? I mean, I was already most of the way there...
So the show was non-stop hysteria for over two hours. I only had one mild seizure and got preoccupied with my meds once, then sailed smoothly to the end with tears of laughter and joy running down my cheeks. Have I over-used the word gratitude yet? Yeah, probably, but don't expect it to stop anytime soon...
Suddenly the show was over, and Q&A time had arrived. She stood at center of stage with a handful of question cards. "Oh, Lisa - is this true? Where's Lisa Tomlin? Another Tomlin! Wow! I don't meet many of you, just once in a while..." She was speaking to all of us, standing in ovation, but I waved my hands and said, "I'm Lisa Tomlin!" a crazy grin spreading taking over my entire face. WOW.
So after the performance was complete, I was graciously ushered to the green room and did INDEED get my photo taken with the lovlier, wittier Tomlin. We chatted about the Tomlin name, and she reinterated that she really didn't meet many of us, but she was always interested in where we came from. I even made her giggle when I told her my Tomlin parents and little brother were GOING. TO. FALL. ON. THE. FLOOR. when I told them about my evening. I even got a Tomlin hug. Amazing.
Boyfriend is going to have a hard time topping this one.
And I thought the orange and pink flower arrangement from my gay friends was over-the-top!
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...