Ain’t nothin’ but a “G-tube,” baby!

I was sitting in chemo a week ago Monday, wondering just exactly what it was that I was doing there. Why? Me?

For my smart friends who have grasped the simple reading of a monthly calendar, you probably thought I’d be starting my vaccine by now. Or in June (or back in March for those who are counting).

But apparently these ‘things’ take time, and a lot more than we had ever hoped for or been told. Since we hit the start button, we’ve learned a lot about the research process, the FDA, and the time it takes to get a trial to come to fruition. (read: it’s not easy) General problems included international miscommunications, $100,000 peptide synthesizers in shortage, and so much more!

To summarize how this all affects me — because that’s what this is all about now, right? — I was planning to start the vaccine this week or next, and we received word of yet another delay, this one to the tune of late October. But this time, this time. . . They are actually making my peptides and there is real forward progress. So perhaps this one is real and I can look forward to the cure in a short two months.

But with delay comes setbacks, in my case at least. I have had to endure more chemo, this being my third different flavor. This was finally the juicy one that caused me to lose my hair. To finally watch my hair fall out after nine years of treatment is comical. Sort of. There were maybe a few tears here and there. But at least well-timed with this summer heat.

This is Allison, Kristin’s sister, subbing in to finish this post on her behalf but under her watchful eye, of course. Big sisters are always good for that, no matter how old we get. Another positive step in getting her fueled up for this round of chemo and immunotherapy was having a feeding tube inserted through her stomach wall on Saturday the 11th, two days before this chemo started. With the gastric tube (affectionately called the “g-tube”), she’s taking in over 2,300 calories a day. We don’t know how long she’ll have it in place, but this has taken away a lot of the stress that accompanied mealtimes and taking down even just fluids. She can now focus on getting rest and recharged and allows us all to keep our eyes on the prize: the vaccine in October (fingers crossed for that date!).

We will update everyone as more dates unfold, but for now, our focus is getting Kristin strong again. Thank you for your love, prayers, energy and support.

With love,

Team Kristin

It’s happening?! Roger that!

It seems of late I’ve started every post by saying something like, “it’s been so long since I’ve given an update.” And considering my last post was in January, this one isn’t any different. Let’s just say there’s been a lot going on. A lot.

So I am going to start with a question. Would you like the good news first or the bad news? Hmmm. There is no one reading to answer so I’ll have to do that for you. Let’s go with the good news!

It’s actually GREAT news! After many months of documentation, proofing, and so many other things I can’t even explain, the FDA has given the personal vaccine trial approval to move forward. YAAAAAAYYYY!!!!! That means all of the money the Peabody Fund (You!) raised, ($220,000+) as well as the generous $1,000,000 gift from the Strauss Family, has given 11 patients the chance to be in this cutting-edge vaccine trial and hopefully change the future of cancer cures! We found out Friday afternoon and we’ve all been on cloud 9 ever since. It’s surreal, almost too hard to believe. The only person who might be more excited is our fierce leader, Dr. Ezra Cohen. This has been his passion, his hard work day-in, and day-out, for the past 3.5 years. We spoke with him on the phone and thanked him profusely. But he said to us that this wouldn’t have happened had we not started the fundraising. He is so humble, such a gentleman. We are so blessed.

I will be the very first patient to begin this trial and to do so I have to go through a thirty-day ‘washout’ of my system. No other immunotherapy drugs, chemo, etc. can remain in my blood. Thankfully I ended chemo treatment last month so we don’t need to worry about that. If things go according to plan, we can expect to get my first injection around July 11.  We have a few hurdles to overcome; mostly documentation, and of course the lab in the Netherlands has to manufacture my vaccine. That’s kind of important. : ) I promise to update you all when things are a go. We are so anxious to get this vaccine in my body!

This is probably a good segway to my bad news (insert unhappy face). The reason I haven’t been writing is that I’ve been very sick. I’ve been hospitalized five times since December, for multiple reasons. I had a recent MRI and CT, and the tumor near my ear continues to grow (but not further along the brain stem, which is great) and the metastatic cancer is worrisome. I have several large lesions and enlarged lymph nodes. I have a plum-sized tumor in my left lung which is causing uncontrollable coughing, and another in my right lung, just slightly smaller. It seems all of the immunotherapy and chemo drugs I have been on did little to stop the growth of cancer. My doctor is concerned and so are we. If the vaccine doesn’t work, we have no other options available today. At this point, we are also trying to buy time. The field of cancer research is moving so quickly, you never know what might arrive on the market in two months.

I am also very weak and spend my days in bed. I haven’t been walking outside or doing yoga; two of the things that I love so dearly. Even a massage can be painful. (not fair for a spa owner!) I rarely visit with friends because I’m in such bad shape. The pain from the tumors causes so much turmoil in five different parts of my head that I am medicated around the clock. Sometimes they cause cognitive deficiencies, which is so hard for me to tolerate.

All of that said, I am going to end on a happy note. I pray several times daily, for others and for myself, and it brings me so much joy. And, I want to thank you for the prayers and beautiful notes with words of encouragement that you send my way. They mean so much to me and help cure the darkest of days.  I could not have made it through all of this without you and your love. I have so much gratitude, it overflows. On days when I can barely get out of bed to brush my teeth, I think about my family and friends and can’t believe I’m so lucky to be the recipient of this love.

We have one more month to go. . . and I’ll be on the path to a cancer-free body!

 

 

 

 

 

 

 

 

 

 

#Hello2018! And an update : )

 

As we say goodbye to Two-thousand and seventeen, I have to remind myself to seal it with a kiss, as opposed to a bunch of negative four-letter words, which would more likely relay how I really feel about last year. Whether it be the passing of Bowie, Prince, Cohen, and so many others, or the year that the Russians took over control of ‘Merica, there wasn’t much joy for me and millions others. (Sixty-five million, to be precise) And that’s the end of my political rant for today. Promise.

And for me personally, there were more downs than ups, that’s for sure. I’ve been rather quiet of late, because it gets old sharing bad news, and studies show that people like to read happy things on Facebook, not sad. So my page would basically be abandoned if I kept everyone informed of what’s been happening! : )

But it’s a brand new year, so you get an update today!

The week before Christmas I spent five days in the hospital; I had an infection in my wound where the tumor is growing, and it required antibiotics that only the hospital could deliver initially. After five days, they released me with an order for home nursing, which included a new PICC line, and antibiotics delivered for one hour, three times a day, for six weeks total. Let’s just say I wasn’t thrilled about the vinyl black bag I have to carry around with me….not so fashionable, and it’s not enjoyable being tethered to anything. But after a swift kick in the attitude, a dear friend gave me a new perspective on the antibiotics and black bag. This was basically delivering me a powerful potion, a nectar of the Gods, the equivalent of gold juice. My healing cocktail. And so now I don’t mind it at all.  It’s like I’m carrying my cure.

I also had a hemorrhaging problem when I got home from the hospital, which was not fun! Imagine blood gushing out of your bandage, in the middle of dinner when nothing has caused it.  This happened for days, until we determined it was Heparin, an anticoagulant drug we used to flush the IV line, and it turned out I didn’t need to be using it at all.  (old protocol from home care with new technology from UCSD….not communicated well in the transition.)

Thankfully, once everything settled down, I was able to relax and spend Christmas with Heaton, Wyatt and Mom.  But we were missing three very important people over the holidays. Allison and the girls had to cancel their trip to Laguna for Christmas. Sweet Nadiya had Croup and a double ear infection. Sadness! But the good news is that Josh was able to peel away from work and they got to spend it together as a family. So it worked out in the end!

Finally . . . . on the medical front: I have been on two trials in the last nine months which we have terminated. They were not giving us the results we wanted. The tumor by my ear is growing rapidly, and I have a new enlarged lymph node in my lungs, as well as lesions there and in the liver.  So I just started a new protocol— basically a trial, but I am not on the actual trial, because it would have taken weeks to get through all the documentation.  I am just getting the drugs on my own. The trial is called DART, and it’s two immunotherapy drugs, Nivolumab and Ipilimumab. Read about it here if you’re really into this kind of stuff.

Bottom line, Dr. Cohen, my oncologist and the man in charge of my personal vaccine, said that we ‘need a win’ now, to get me through the next few months until the vaccine is ready. The vaccine is in the manufacturing process with the company in the Netherlands, and going to the FDA for approval. Soon. He would do anything he could to speed it up but it’s literally out of his hands.  So for now, I am doing everything in my power to stay healthy, and pray that the new DART protocol I started last week will give us the much-needed win we need.

On the note of the very exciting personal vaccine trial, we ended our Generosity campaign yesterday, and with the donations made by all of you, as well as The Strauss family— and many people whom I’ve never met— we raised a whopping $1,216,356!  This amount will fund twelve patients in the clinical trial at UCSD. It is so incredibly exciting, and I thank you from the bottom of my heart. It may very well end up being the final cure I so desperately need.

And with the close of 2017, I, along with all of you dear souls, get to ring in the new year and visualize the very best 2018 possible. I’m keeping my thoughts positive and looking at the best in everything. And my wish for this January 1? I ask all my dear friends to send prayers, healing energy, love, light, mantras, rubs on precious stones and twirls in the sky with your favorite energy sticks, if you’re lucky enough to have one!

Happy 2018 to all!  XOXO K

Breaking News from the Peabody Fund!

Hello dear friends and family, and all of you sweet souls out there who have donated to the cause!

I am delighted to give you this breaking news from the Peabody Fund. Thanks to your collective generosity and an unexpected gift, I can report the following:

$197,000 Peabody Fund donations + $1,000,000 Strauss Family donation = FUNDED!

Before I give you all the details, I want to say this is the best example of putting your wants and wishes out into the universe, making them known, praying for them, and asking all of your loved ones to help.  If you want something badly enough, it will happen!

This week we received the incredible news that Iris and Matthew Strauss of San Diego have generously donated $1,000,000 for the development of the personalized cancer vaccine trial led by Dr. Ezra Cohen, my oncologist and fierce cancer-elimination leader!  The Strausses have been huge supporters of UCSD, founding the Early Detection of Ovarian Cancer Center in memory of their youngest daughter, Stefanie.

Their gift, along with the donations from the Peabody Fund, will support the personal cancer vaccine trial led by Dr. Ezra Cohen, professor of medicine and associate director for Translational Science at Moores Cancer Center.  This is the most cutting-edge cancer research happening today.  I believe Dr. Cohen said it best, “This is the first time a trial like this has been done. The idea of a personalized vaccine that can be applied to all types of cancer by activating the immune cells is unprecedented.”

To give you a recap on how this works, every cancer has a different molecular makeup based on the specific mutations and other genetic alterations within the tumor cells. And each person’s immune system will respond to different stimuli in disparate ways. In order to make the treatment work, they will develop a precise vaccine therapy that combines the uniqueness of an individual’s cancer with the particular message needed to activate their immune system to fight the toxic cells.  As I have said before, this isn’t about breast cancer or prostate cancer or head and neck cancer; this is about YOUR cancer.  (and MY cancer!)

With the money we have raised through Generosity.com and the Peabody Fund, combined with the Strauss family donation, there are now funds to support eleven patients in this groundbreaking trial.  But we want to continue our fundraising efforts! With each additional patient in the trial, we are able to help another family and gather more data to benefit the science.  If we can raise another $30,000 we can add a twelfth patient to the trial.  The greater the number of participants, the better!

To make a donation, please visit our site at Generosity.com or donate directly to the UCSD fund page.  And please like our Facebook page, and follow us on Instagram, and if you’re inclined, share, share, share!!

We cannot begin to express our gratitude to the Strauss family for their generous donation. The future of cancer treatment is just around the corner.

All my love and gratitude for your support and your generous donations, you truly made this happen!

XOXO, Kristin

The press release for the Strauss donation follows:

http://ucsdnews.ucsd.edu/pressrelease/strauss_family_gives_uc_san_diego_1_million_to_help_develop_a_cancer_vaccin

Awesome news on the fundraising front and a Kristin update, too.

Hello dear friends and family!

It’s been much longer than I had hoped to write — but as they say, sometimes the best intentions don’t go as planned.

First, I want to start with incredible news regarding the Peabody Fund: Cancer Vaccine Project. Due to your overwhelming generosity, we have received donations totaling over $110,000! It is hard to believe we have come so far in just over three weeks! I cannot thank you enough for the very generous donations — it is true that every single penny adds up. We knew it would be a long road to $1.1 million dollars but we are well on our way. I am so grateful for your love and support! I am so overwhelmed by all of you and will always be looking for ways to pay it forward. 

And for an update on me. The last few weeks since we started the fundraiser have been really tough. I had visions of daily updates and sending thank you emails and instead I have been in bed most of the time, resting, sleeping. I haven’t cracked open my computer in weeks. The headaches are getting worse and seem to be 24/7 these days; even morphine and dilauded are not doing their job. I have found myself wondering what is causing these headaches: is it the nerve damage following 90 Gy radiation? Or is it more cancer growth along the critical nerve structures? I had another nerve block a month ago and it did nothing to alleviate the pain. At the end of the day, I am faced with two distinct scenarios: the nerve damage is causing the headaches and I will live with them for the rest of my life. Or, the headaches are tumor growth.  And that, we cannot tell.  Scans of the brain show inflammation along the area but unless they open me up again, it’s just speculation.  Oddly enough I find myself hoping for more cancer so that this vaccine will get rid of it. And that feels very weird, hoping for more cancer.

On a related note, I had a biopsy on my initial tumor site a couple of weeks ago and there is more tumor growth, which probably explains why this wound of nine months is not healing.  I have no idea what this means for me because they can’t operate on this area again until we do reconstruction with a transfer of nerves and tissue from my arm. So more doctor appointments this week to see what my options are in the meantime.  Ahem…

These days are challenging to say the least. There have been a lot of tears lately, wanting to feel normal, wanting to be a better mom and wife, wanting to spend time with friends, wanting to work and be active. Just wanting to wake up without my head feeing like it’s going to implode. Wanting to live life.

Yesterday was Heaton’s eighth birthday and it took every ounce of my being to show up at the beach for two hours and celebrate with him. Thankfully I have good friends, Mom, and Wyatt who did everything so I could just show up. On Saturday, my sweet (now big) boy took home two gold medals in his age group for boogie boarding and body surfing and sadly I missed it.  Here’s a cute pic of the birthday boy, covered in frosting following three cupcakes, showing off his next round of sugar from the pinata take. (thank you Miranda and Chris!)

I will admit I feel badly for the sadness of this blog combined with such amazing news on the fundraising front, and the joy of having a wonderful family. As always, I try my best to be authentic. I’m just not my best self these days.

In closing, I hope you can join us for a very special event, Mandalas For Kristin — a one-night silent auction at Davis Gallery in Austin on September 23 — featuring mandalas created by 60+ very talented Austin artists and photographers. I am so grateful for the outpouring of love by the Austin art community. A big thank you to my mother, Jan Heaton, as she sent out invitations and had such an incredible response. She is one well-connected and beloved woman about town. : ) Check out our Facebook page for more event info, and I hope you can make it.  And please, share with your friends!

With everything in my heart, I thank you for your love and support. I have so much to be grateful for in all of you, my dear friends and family, and the future that you are helping make possible, with a cure for me, and nine other people. The future is so bright. 

Love, Kristin

 

I lost 17 pounds on the cancer diet!

Hello my sweet friends.

Once again, so much time has passed. The last several months have been tough — a test of my fortitude, my emotions, and honestly, on some of my worst days, my will to live. There are days I feel like the cancer is getting the best of me. And this is the hardest thing to admit. I have an ungodly amount of strength, desire, love for my family, and joy of waking up to each new day. 

 You — my support group — have followed me in person or read about my plight; the last eight years filled with nine surgeries, ninety radiation treatments, chemotherapy, and all of the the unfortunate related side effects that go with an aggressive, rare form of cancer. And as many cancer patients will attest, the treatment sucks way worse than the cancer itself.

There are days I wish I had taken the alternative route, living only on turkey tail mushrooms and turmeric, weekly colonics (maybe not), interesting tonics carried across the border and magnets strapped on all sides of my body, using their universal pull to remove the disease.

But when it all started I was scared. I was pregnant. Doctors knew what to do. How to protect my baby.  I believed them. And after a short visit with the folks at Gerson, down in Tijuana, to learn about their miracle tonic — and a subsequent “you’ve been declined” letter because of the proximity of the tumor to my brain, my decision was reinforced: stick to the conventional plan. 

My cancer, mucoepidermoid carcinoma of the parotid gland, has a five year survival rate. For me it’s year eight. So yes, you can call me a survivor. 

Some of you have also called me a warrior, Wonder Woman, and so many names I feel I hardly live up to. Most days I feel like half a human, lying in bed with intense headaches, some that don’t go away for days at a time. My head most often feels like it is stuck in a vice, with an evil villain from one of Heaton’s games squeezing it tightly, wondering how much more I can take.

I spend a great deal of time stuck in my head, despite the best intentions of daily meditation and yin yoga, wishing I could be the perfect, involved mom that so many of my friends are. But the notion of being a homeroom mom or even showing up once a week to tend the class garden are hardly feasible in my world. I feel lucky enough to read to Heaton in bed or spend the occasional day on the beach with him, tucked under an umbrella, watching his love of the ocean unfold. He is a true fish, that one. 

With this last recurrence in November, all options were off the table. They tried to remove it surgically but it came back within two months. So here I am now, wearing a bandage to cover the gaping hole by my ear that just won’t heal. 

Starting in September I’ll be doing some progressive wound healing for eight weeks in a hyperbaric oxygen chamber, five days a week, two hours a day. It will help the healing process, we assume.  But it’s the metastatic disease in my lungs that concerns me most. We need to do something on a scale that hasn’t been done before. 

This week, my team and I are launching an important project. I am telling you now because I’m asking you to be on the lookout. And more than anything, I want you to share, share, share. My life could literally depend on it.  

Love kristin 

p.s. in one of my sick attempts to find humor in this, yes, I’ve lost 17 pounds in the last 6 months.  It’s likely from Cachexia, a cancer-related illness that often accompanies metastatic disease. It’s also a sign for ‘healthy’ people, that when you start losing a bunch of weight inadvertently, you should go see your doctor.  But it sure is fun eating my weight in lobster, here at my family reunion in Maine, and some ice cream. 

…and many more!

I sit here on the sofa, wide-awake at 2:33 a.m., warm cup of tea in hand, on the early morning of my 47th (gulp!) birthday.  I reflect on the fact that I am 47.  That sounds dangerously close to 50…how can that be? It feels like five or six years ago I was sitting in Benjamin’s (‘been-HA-mean!’) Spanish class at UT wondering how I got stuck with such a lousy professor.

But here I am, 47, and happy to be alive, celebrating another birthday.

A disclaimer: I am not usually up at this hour; my days of last-call at the bar ended years ago. If I go on and on with non-sequiturs, I’ll blame it on the hour and my beverage choice of chamomile vs. cappuccino.

This morning I woke up at 1:00 after a terrible dream about a tsunami flooding our four-story beach condo, being whisked away in a helicopter with my family, and other awful things. So I lay awake in bed for an hour, thinking to myself…”what was that all about? We’re 120 feet above the beach, and I don’t think the waves would make it that high, and duh, we don’t have a four story condo.” This dream was not about me. But like any bad dream, you either go right back to sleep or you dwell on it until it makes you crazy. And I haven’t had a nightmare in a long time, so it kind of rattled me.

I started thinking about other positive things, to shift my mind to a happy place.  Which then led my brain to some typical, incessant planning. For those of you who know me well, I’m a planner. A flexible and often spontaneous planner, but a planner, nevertheless.

I then started to wonder…is this why I’m still here? I was given this diagnosis eight years ago and according to the statistics I should be in an urn in our living room. But I’m not. Is it because I can’t seem to let go of the future?

I know a lot of people dwell on their cancer. It’s an easy thing to do, especially when you’re dealing with recurrences and symptom management, year after year. And don’t get me wrong. My days are not perfect. The headaches and the pain can take me down for days at a time. And I have an open wound from my November surgery that has been bleeding for seven months now. I just tell myself that those uninvited, mutated cells (the cancer) are on a superhighway out of my body, and it’s causing a little bleeding from the traffic jam.

But back to my planning. I think it must be what keeps me alive. This week we met with a contractor to talk about some little renovations for our house this summer. I still forward my partners emails from brokers about future spa locations. I made travel plans to Europe for the first week following the end of my weekly labs while on trial.

Last night at an Easter egg decorating party in the park, I ran into a new friend of mine who has also had some health ‘issues’.   We spoke about how important it is to re-frame the illness and envision your life, as you want. It is a proven; if you let your mind consume you with thoughts about the dreadful illness, it can take over your body and grow.

And, you may be thinking— now that my cancer is stage 4, and had been hovering at stage 3 for seven years— that perhaps I’m not doing a good enough job of envisioning my perfect health! I do have to remind myself that this is an aggressive cancer. And there is still time. I’ve said to many friends that there hasn’t been a better time to have cancer, ever. The advancements they are making right now are crazy exciting. And I have also been blessed with the very best doctors.

So admittedly, I try to take it easy on myself that the disease has progressed. No one has ever enjoyed hearing the words “stage 4”. But I rarely –if ever— truly consider that I might die soon, although I have been known to make some bad jokes about it. : ) And I am comforted by the fact that my days consist of meditation, yoga, and unintentional, vivid planning.

To let you peek into this crazy little brain of mine, a typical hour might consist of:

“I am cured — I’m so healthy it’s embarrassing! – I’m at Pearl opening our super beautiful spa in three weeks! – I’m skiing in Aspen next spring— I’m helping my friend open her yoga studio in Laguna (please!) – I’m writing up ideas for dem.it.forward, a fun concept to save us from the apocalypse – etc.) And then back to work, writing copy for a marketing piece.

As I really need to get some sleep, I will wrap up this rambling.

Before I go, I want to share that I had a will drawn up early last year, like any responsible adult with children and a business (oh, and cancer) should do. It has been sitting in a safe place for months. It has a line for my signature and two witnesses. I signed it. I had a friend sign as a witness. But that third line remains blank and isn’t valid without it. I recently determined it’s because I’m not ready to go anywhere yet. Hopefully someone will remind me if it gets to that point, but I can’t believe it’s going to happen in this decade or even the next. I have so many more things to do in this life.

Finally, it’s tradition on my birthday now, after meeting the wonderful Wyatt and adopting many of his traditions, to thank my parents on my birthday. It was at 4:59 a.m, about an hour ago on this day, 47 years ago in Alexandria, Louisiana, that my mom finally got to hold her daughter, who came out after a 24-hour labor, breach, doing the splits. Thank you. You’re awesome too, Dad, but Mom, you really deserve the credit after that labor.

So, happy birthday to me….and many more. 

p.s. this box came from Allison yesterday. The most amazing, talented, wonderful sister. Can’t wait to open it today!

The Man with a Plan

I believe, like many people, that things happen for a reason.  Some of those things are not always clear, and we find ourselves asking ‘why is this happening to me?” But having faith in one’s purpose in life and setting your intentions and most importantly— believing in the knowledge that God and the universe will sort out all the details— is a very comforting thing.

And, every obstacle is an opportunity.

And now I’ve got a new opportunity, and I have a man with a plan. It’s not Wyatt, (although it could be, he’s that amazing) and it’s definitely not Donald Trump, because he’s got no plan and will be impeached before the end of this year. (Setting intentions!)

The man is Dr. Ezra Cohen, and he’s my new oncologist at UCSD. And somehow, he has me feeling pretty good after a day of setbacks.

The bad news we received yesterday is that the cancer is not only in its original location, but has spread to my lungs and diaphragm. Two weeks ago we found out I was having a local recurrence, the third in just two years, and had a PET/CT to look at what else was going on in my chest, as I’ve been coughing a lot lately. He broke the news yesterday afternoon, and I will admit I was a bit numb. But okay.

The plan, while I can’t divulge all of it (yet) will be starting with a targeted therapy called Inlyta that has been used successfully in renal cancer and has the same marker as my cancer, following a month of tumor sequencing and all kinds of genetic stuff that I’ll never really understand, let alone be able to explain. : ) I plan to start in the next 2-3 weeks and continue on until phase 2 is ready. (More to come on that, later)

When I said there’s a reason for everything, it has become clear that our move back to Laguna was a bit of synchronicity. Having faced so many issues with the last recurrence, I needed a good, closer-to-home cancer team to follow up with me monthly, instead of making the long haul trip to Boston every time I had an issue.

My lead surgeon in Boston prompted a meeting with the new head of Head and Neck Cancer Surgery at UCSD, Joseph Califano, and our meeting with him led us to Dr. Ezra Cohen, the new head of Oncology for Head and Neck Cancers. Let me just say I have landed with (what I believe to be) the most exciting researcher and clinician dealing with immunotherapy for these cancers in the country. Not only that, he was appointed Chair of the NCI Head and Neck Cancer Steering Committee, so it’s safe to say he is well revered. Even my wonderful oncologist in Boston said, “There’s no one better” which fueled my confidence even more.

This man has a plan and has exciting things in store for me. I can’t believe I just called cancer treatment ‘exciting’ but who knew…

I feel so grateful and so prepared to get rid of this cancer, once and for all. I envision my healthy, full-of-energy body, taking me on a ski trip next spring, even if Wyatt has to drink hot toddies in the lodge all day, which you know he won’t complain about. Fellow skiers, get ready to hit the slopes.

XOXO, Kristin

p.s. My matcha tea was just made much better thanks to Heather Snow. (Love you, H!) It feels so perfect, drinking my daily ritual in such a profound reminder cup.

Third time’s a charm.

It’s been five months now since I celebrated my one year anniversary of being in remission.

But I’m sad to report it’s back.  (insert very unhappy face!)

But the good news: it’s small, it’s contained, and I’m going to get that scrappy little genetically mutated piece of garbage out of my body.  

So here’s how it all went down.

For those who don’t know, we moved back to Laguna in August on a whim.  We sold our house while on vacation, which wasn’t even on the market, and rushed back to Austin to pack our house and move in two weeks, just in time for Heaton to begin first grade.

The allergies in Austin were just killing me- on top of all of the other issues I have now following 90 Gy radiation (that’s three times what a normal cancer patient will receive in a lifetime) like my throat closing up, mucositis, a half-paralyzed mouth and vocal chord, vertigo and what seems to be a chronic infection in my right ear. I am just a hot mess of cancer treatment symptoms.  Anything I could do to alleviate one more issue was a no-brainer.  So here we are, back in Laguna with some fresh ocean air.

But back to the tumor.  All summer long, I had a small wound behind my ear that randomly opened up one day, and just wouldn’t heal.  This was a leftover wound from radiation and surgery from eighteen months ago now.  And that stubborn little thing just wouldn’t close up.  Even my local ENT tried to cauterize the wound two times with no luck, so we were running out of options.

On a random chance meeting with my lead Boston surgeon who was in San Diego for the annual ENT conference, he suggested I meet the new department head of Head and Neck Cancer at UCSD, saying I needed good consistent care on an everyday basis. It’s not easy (on us or the wallet) to fly to Boston every time I have an issue.  So we met this wonderful doctor, Dr Joseph Califano, four weeks ago.  After looking at the wound, and considering this crazy cough I’d had for weeks, the laryngitis, and the ongoing pain, he decided to biopsy it.

Sadly the news was not at all what we expected.  The cancer was back.  But if there’s a silver lining in this grey cloud of mine, it is that the cancer appears to be localized, superficial, small, and hopefully easy to remove.

We spent the last few weeks looking high and low for alternatives to another surgery. My surgeon told me last time that there wouldn’t be another surgery in my future.  But here I am, going in again.  I have been so excited about the advances that have been made in the last couple of years with targeted therapies.

We tried to find an immunotherapy treatment that was available- either FDA approved or in trial, but sadly my cancer is rare, also referred to as an orphan cancer.  (Stay tuned for an orphan cancer fund….there isn’t anything worse than a cancer diagnosis, only to learn that you have one that isn’t researched unless it happens to get picked up in a basket study)

We leave for Boston today, and I’m scheduled for surgery tomorrow at 11AM EDT. The surgery could go one of two ways.  The main issue is the closure of the wound.  My poor skin is so battered from all of the radiation and the nine big and little surgeries I’ve had, that we may have to do a skin and nerve graft from my arm and leg….just adding to the patchwork that makes up the quilt I call Kristin.  But that will come later, and only if I absolutely have to do it.

I will confess, this time is so different from the last recurrence.  When I recurred on my five year anniversary, I was so full of energy, and wasn’t living with any symptoms that affected me physically.  But I’m in a different place now, with intense neurotrophic headaches that can take me down for a full day, and the emotional fatigue that goes along with it.  I am doing my best to muster up the strength to go through this again, but it is going to be a challenge, for sure.

My dear old friend Rod Seymore shares these beautiful quotes every Monday morning, and last week was especially relatable.

“Every challenge we encounter in life is a fork in the road; and we have the choice to choose which way to go – backward, forward, breakdown or breakthrough.” -Ifeanyi Enoch Onuoha

I’m going for the breakthrough.  Even if it’s a little harder to get there. Asking you all to send prayers, love, light and any long-distance healing (and blood conservation) meditations that will help me get through surgery Wednesday morning.

I’ll report back soon, post-surgery.  Praying that I’ll have good news and clean margins to share.  Love to everyone, K

p.s. another shout out, this one to Lina Flake for the photo opp.  That sign (and other silly props) arrived in the mail yesterday and it just couldn’t have said it any better! XOXO

p.p.s. let this serve as my out-of-office reminder.  I’ll be back on task this Friday. Monday, latest. : )

Good news..one year clean..sort of?!

Author’s note: for those of you who want the good news, skip to the last paragraph and enjoy that glass of wine.  For all you others who want the real story, keep your glass of wine and read on.]

 

One of these days, I am going to report back that we have taken the long journey to Boston, I’ve done a few MRI/CT scans, visited eight of my doctors, and received the awaited call from my lead doctor.  “Everything is perfect, Kristin!  Looking great!  Keep up the good work! Whatever you’re doing, keep doing it!”

But for now, the conversations are more like this.  (picture me in my house, doorbell rings, I’m walking to open the front door, and my lead surgeon/oncologist is standing there, with a giant check in his hand)

“Kristin, it’s me, Derrick, with Publisher’s Clearing House! You’ve won a million dollars!”

Me:  “Wait, Dr. Lin, you’re with Publisher’s Clearing House now?  What about that surgeon job?”

Dr. Lin: “Oh, don’t worry about that now!  You just won a million dollars!”

Me: “Oh, that’s wonderful!!!  Yay!  Can I cash the check now?”

Dr Lin: “Yes!  Of course, but just remember to pay the taxes first- not exactly sure how much they will be, but I’d go ahead and write that check for $999,990.000.  That should cover it.  The other $10 is yours.”

Ahem.

Starting to feel like this is my story.  And yes, I am delighted to be alive but I would like a simple Hail Mary without an asterisk and fine print.

So the story goes like this:

We got home from Boston a week ago, tomorrow.  After two crazy days of appointments, we finally heard back from the doc this afternoon.  According to the lead radiologist, the scans appear as if there are “no new changes.” And for that we rejoice!  But then, he says, “But there is slight enhancement in Meckel’s Cave” and that means there is something new near my brain, and the previous 4 seconds of elation we felt just got reduced to a moment of bliss followed by a question mark.  He finishes his thought, with something about possible radiation damage, but it’s really hard to absorb the good when all you can do is ponder the negative.

I live this life…days with yoga and physical therapy and gentle meditation, followed by invigorating work for a business I adore, and most importantly, the joy of a family life that is full of love, but I have to admit that living scan to scan is a tough life. Making life plans on a quarterly basis is not ideal.  And contemplating the longevity of your family unit is even more painful.  As I wrote about many months ago- life is fragile, and we all know that.  But many of us do not live our daily lives that way.  Even with my really dreadful health and history of cancer, it is still hard, even in my body, to be mindful all the time and live each day to its fullest.

Those with crappy health like myself can relate to this.  A few weeks ago, in the midst of a hotel booking, the agent asked for my credit card expiration date.  “4/20,” I repeated. And as I stared at that date while I read the numbers aloud, I wondered, will I make it to 4/20, or will this piece of plastic outlive me?   

For someone with my type  of cancer — mucoepidermoid carcinoma of the parotid gland– and there aren’t that many of us,  we all know that living past the five year mark is something to celebrate.  And as of now, I am at almost seven!  But for someone like me who has this insane will to live, that isn’t good enough.  Because I want to be the model patient…the one who dies of old age with a bourbon in her hand.

I’ll say that at some point it becomes difficult, when running into friends at social events or making small-talk at work, to answer that question, “How are you??!” without saying “Great!”  Truth is, I am thrilled to be alive.  But the side effects of the treatment I’ve received (3 X the amount of radiation they give to people in a lifetime) plus the nine surgeries, have weighed heavily on my health and my spirit.  If I were to list all of the issues I have today, from vertigo to a half-paralyzed tongue with speech issues and twenty other things, it would remind most of the side effects rambled off at the end of a commercial on tv for a new drug.  But the problem is, I’ve got all of ’em.

My only hope today is that tomorrow I wake up with a whole new outlook on life and healing.  Because frankly, 92% of the days that I rise, I wake up with a spirit that is focused on healing and love and life.  But the other 8% wants a barely legal frozen margarita and plastic cheese queso (Austin people, you know what I’m talking about!) and a three-day bender with Netflix and Talenti gelato.

To end on a high note, for tonight, I am officially at the One Year Mark. And I am three months away from my next set of scans.  I do have something pretty awesome to celebrate!  That means another quarter-year of (mostly) bliss, and some beautiful sunshine in Laguna with my amazing family. But if you see me between now and then, and I’m eating queso, please go ahead and kick me.

Love to my friends and family, K