Sometimes you can have a terminal illness and still look good. Or at least, not look like hell. I see this with my friend Larissa every day. She’s got Stage 4 breast cancer that spread to her liver and bones, and recently learned that, after ending chemo and going on hormone therapy, her liver had blown up with tumors again. She’s back on a different form of chemo, and her liver is responding well, with the swelling -- and, hopefully, the tumors -- shrinking. Before she went back on chemo, though, she couldn’t keep food down because her swollen liver wasn’t leaving any room for her stomach to do its job. She lost weight, pounds she couldn’t afford to lose.
Of course, in this weight-obsessed world of ours, being thin is celebrated. So even though her collarbones are jutting out and you can almost see her ribs, everyone says she looks “good.” (And we’re not immune -- we actually joked the other day that it took cancer to help her reach her “goal weight.”)
And she does look good, most days. Because she used to be a model, she automatically lights up whenever a camera (or a phone) is aimed at her. She does her patented model’s head tilt and smiles – no matter how bad she’s feeling. The other day was a perfect example. She’d woken up feeling crappy, fighting a cold and dealing with an on-going bloody nose. A photographer was coming later that day to shoot a “day in the life” segment for a breast cancer research organization. Larissa was less than pleased with the condition of her house and was, as her husband Martin said, “in a mood.” After yelling at her vacuum cleaner because it wasn’t doing its job, she got a care package in the mail. She started to open it and Martin aimed his phone at her, so she could document the kindness of others for this blog. The second the phone turned her way, her scowl vanished and a big smile lit up her face. It was amazing to see.
Another example is the photo above, taken at a Vermont brewfest on the Saturday of Labor Day weekend. In the pic, she looks happy, as usual. But not long after that photo was taken, she had to lie down because her hip, deteriorated from both cancer and the resulting arthritis, hurt so much she could no longer walk.
In most of the photos and videos she posts on her blog, she’s smiling and upbeat. She’s putting a good face on what is a very bad situation. When things got bad with her liver, I left my summer job wrangling horses in Wyoming and drove home because I feared the worst. I was truly afraid I wouldn’t make it home before things went south. Thankfully, the cancer in her liver is responding to the chemo and she’s rallying.
But sometimes I tell her she should let people see her when she feels (and looks) her worst. She puts too good of a face on things sometimes, in my opinion. People need to see the reality of cancer, and realize that even when she’s smiling, she’s sick. And scared. And that never goes away.
One of the most incredible acts of kindness and support came from my idol Mariah Carey at her last show tonight in Seattle! All this love is absolutely priceless and provides me enormous strength & will power. It's so nice to shed happy tears for once!!! So blessed!
Mariah Carey's music has and is currently the music I can count on to hold me up on my darkest, and my bright days. This dedication of "Hero" is priceless to me and will be replayed over & over & over & over again!
Please share as Mariah Carey & her team should be recognized for supporting me throughout my fight for my life battling Metastatic Breast Cancer!
Edited by Larissa who still has the happiest tears falling from my eyes!
About a year ago, my hair was thinning so badly from chemo I started to need to wear wigs and hats. My hair was long and curly and was the feature I loved most about my physical appearance. So naturally when it came down to shaving my beloved hair, it needed to be private since my tears ran like a flooding river.
When my hair falls out, it feels like there are tiny bugs crawling on my scalp. I can feel it whether it falls out in clumps or by the single strand.
About a year later, I'm facing the same situation. This time I'm undergoing a different chemotherapy, but with the same results -- my hair begun falling out noticeably over Labor Day weekend. I first noticed it during a shower at the campground on our mini-getaway to New Hampshire/Vermont. I noticed an increase of hair on my hands but I wasn't too worried yet. Then that feeling swept over my scalp -- like small tingly waves and, when I scratched, clumps of hair attached themselves to my fingers.
But I don't want ANYONE shaving their heads for me! Why should others suffer? I'm not going bald by choice! I'm going bald because I'm fighting to survive as long as possible. Over the past year I've learned that it's a major help to have the love and support of my family and friends, so that's why I want you all to be a part of my head-shaving this year. Will this be my last time losing my hair? I don't know, but I do know we can make this time fun, share laughs together and make the most out of a crummy situation!
Here is the drill. I would love to throw a Shave My Head Party, but I don't think I'll have the energy or the time to pull it off before my hair falls out its own. So my dear friend from Michael Francis Salon in Middletown is going to shave my head, and we will share the event through Facebook Live. With cake! Before I got cancer, my favorite cakes were a chocolate cake made by Ria Violano, and ice cream cakes. I stopped eating cake because some say sugar feeds cancer. Maybe some studies say it can, but as as Tina Fey said, “just eat cake.” Thank you, Tina -- don’t mind if I do!
Blogging when you don't feel good it is definitely much harder than blogging when you feel OK. When I started blogging I had bad days, but I was fortunate to have many good days. Recently, I've had many more bad days than good days.
This past week was my first week back in chemo, and I really feel it. I don't know if it was the chemo or my liver that made me sick, but I was puking before I got my chemo.
Last Monday’s drive to Dana Farber in Boston went very well; we barely hit any traffic, we barely got lost, for the most part we were running on time and everything went rather smoothly. But my stomach was bothering me, and had been for days. When I say my stomach is bothering me, it's really my liver — it's so big that it's pushing on a lot of organs, making things very uncomfortable. I have been very fortunate to have had not too many days where I needed to vomit.
The chemo I am on is administered much more easily than my previous infusions, and while I could receive my treatments in Connecticut, I feel it is smarter to get my foot in the door at Dana Farber now, in the hopes that I will become eligible for a clinical trial in the future.
I still walked in to chemo with a smile on my face, full of jokes and sarcasm and grateful to be starting treatment. I am still surrounded by such remarkable people and great help. So this won't be a long blog because like I said before blogging while you don't feel good isn't so simple. So I'm going to go back and rest, eventually try to eat and get fluid down and, most importantly, feel better. I will keep you all updated and in the loop!
Here is an example of how I feel:
Have you ever been really hung over and you knew that for the next few hours you should be careful with the liquids, maybe don't eat and rest it off? Then, in between 2 and 8 hours, you pull yourself off the floor and go eat some Chinese food or chicken wings.
The only difference with me is I don't know when the hangover will end, so I can't go eat and drink a huge glass of ice water. Because lately, whenever I think I'm feeling OK, a few hours later the hangover has begun again. Although I have had zero alcohol in over a year, I'm still a champ! After all those years of practice in college, I know how to pull myself off the floor and I know the drill. I just need to learn the signs of when it's going to happen so I can go on the defense. Maybe there will never be warning signs and this is it until my liver gets better.
Thank you college for the real-life training! Now I just need to find a clean cold surface to rest on in the dog days of summer!
Today I walked into Dana Farber for the second time. The first time was a consultation and they were absolutely wonderful. Today I was lucky to be able to get a follow-up appointment (very quickly) to discuss clinical trials and treatment plans.
It’s no secret that my liver isn’t too happy right now, but we hoped that a certain clinical trial would be a good fit for me. Unfortunately, we learned that my liver tests are too high right now and we need to act fast to start my next treatment. If you’re wondering if I'm sad about not getting into a trial right now, I’m not! I will always be eager to jump into a trial at some point but the medication I will be on - Eribulin (Halaven) - is a type of chemo that would have been in my trial anyway.
My biggest decision today was whether to continue treatment (Eribulin) here in Connecticut or to make the jump and join Dana Farber full time. Eventually, I would need to leave for a bigger hospital. Even though many have faith that this type of cancer will go away, it’s not going anywhere for right now. (And medically you never stop being Stage 4 with breast cancer.)
So.... Drum roll… we are heading up to Boston for treatment! I will miss seeing the Starling Darlings all the time and, as my oncologist says, I will still see her from time to time as well. It’s scary jumping to a huge hospital but I'll be in good hands and close by clinical trials for when it’s my time.
Back to chemo! Don’t feel bad for me; do you remember my video of my last day of chemo? You will hear me say, “last day of chemo, for now!” I never wanted to fool myself that that day I would walk out of chemo and never return. I have metastatic breast cancer, which means my journey won’t be the traditional: surgery, chemo and radiation. It’s another reason why I choose to share my story so publicly. Advocacy and awareness is being able to share your good, bad and the ugly, or how else will people know that Stage 4 needs more?
But now that I’m going through chemo again, I will lose my hair again, but this time I don’t plan to have my husband shave it while I wept in the corner! If I need to lose it again I'm going to celebrate and party through it! I haven’t had a cancer party, but I sure the heck deserve one!