Reflections on Death

November 23, 2019

My Mother-in-Love died this week.  You might think that I made a mistake calling her my Mother-in-Love rather than Mother-in-law, but no, this is how we introduced each other,  Daughter-in-Love and Mother-in-Love.  Not right off the bat mind you. Her youngest son and I met and married young, very young, and I’m not so sure that everyone around us thought we would still be married 38+ years later.  This was evidenced by her attempting to fix him up with a lovely Greek girl shortly after we began dating. After we were married however, she embraced our love for each other and welcomed me into their family.

She was first generation Greek American. Her father emigrated as a young adult and settled in the Denver area where he worked making wheels for locomotives and later as a coal miner. Once he saved enough money, he wrote to his mother in their small village saying he had found a husband for his sister and also asked her to send him a wife.  Being adventurous young women in their late teens, the two crossed the oceans, arrived at Ellis Island and took a train to Denver to meet their future husbands. They did what so many emigrants have done before and since.  They found a way to hold on to their heritage while embracing the fact that they were creating for themselves, their children, grandchildren and great grandchildren, the American dream. 

My Mother-in-Love was beautiful and vivacious. The only girl and youngest of three, I’m told she was the apple of her Daddy’s eye.  She was a risk taking, fun loving, gracious, devout, demanding, giving, willful working woman, and she was a survivor.  After her first husband died at the age of 39, she found herself with five children to raise and support alone. She continued managing the business they had taken on together, finding it necessary to ask her mother for help with her children.  She remarried and gave birth to her sixth child a few years later while working many days from 5:00 am to 5:00 pm. She employed friends and family over the years, many whose first job was washing dishes, wiping tables, filling the coke machines and doing the next day’s food prep.  My husband learned how to run the cash register while standing on a stool at the tender age of 6 or 7.  It’s no secret where he gets his work ethic from.

She loved to cook, and was exceptional at it. Stories abound about her delicious Greek chicken, tiropitas, spanakopita, dolmathes, paximathia, baklava, rizogalo, and lamb with spaghetti. She was a strict teacher when it came to teaching others EXACTLY how she wanted Greek dishes prepared and it took a period of testing before she was willing to let me in on the secrets passed down from generations of Greek women. She was the Queen in every kitchen and I learned early on if they were coming to visit (which they did at least once or twice a year for sometimes a month at a time), I was to yield the kitchen and best of luck finding the pans, bowls, condiments and utensils that had been relocated to a “better” place because after all, it just made good sense. She did this not because she was trying to be difficult, but because that was just her way. I found this hard at times and our willful and strong woman ways could clash. This dance continued, her rearranging my space, me moving everything back when she left, until she could no longer manage the kitchen and this broke my heart. My memories of her teaching our daughter to make kourambiethes, dressed in matching aprons, flour and powdered sugar covering the counters and floor, laughing with sticky hands as they touched each others noses is unforgettable. As is Lene excitedly bursting through the door with purple fingers exclaiming that Yiayia showed her how to “pop the eyeballs” out of squid (being prepared for the Greek Festival) still makes me laugh.

My Mother-in-Love died eleven days before her 94th Birthday. She began taking medication for Alzheimers disease in 2005 and lived in memory care for the last five years of her life.  She never knew about my cancer diagnosis, she had already slipped too far away from the world she tried so desperately to hold on too. While I would have loved to unburden myself over a cup of coffee or a glass of wine, instead we simply held hands and that was enough. She had an uncanny way of knowing what one needed, maybe not wanted, but needed even before they did.

I spent several hours with her in the days before she passed and it was impossible not to wonder if this was what my own death would be like.  I know it sounds a bit morbid but as I’ve said before, the after death part doesn’t bother me, it’s the dying process that makes me a bit squeamish.  I try and balance these conflicting feelings by attempting to live in the moment and yet do what needs to be done to be prepared. I guess I could call myself a Mystic Realist, it seems to fit.

I’ve had the privilege to sit with a few people before their deaths and have experienced some incredible moments.  A special moment that stands out with her was when she looked out across the room and said, “Well, Hello!” as if a friend or loved one had just stopped by for a visit. Another poignant statement was, “I’m in between here and there.” At one point a look of wonderment appeared on her face and she said with almost palpable awe, “Isn’t that something!” as she gazed into a reality that only she could see.  There are those who will say that the brain does many things as it responds to a lack of oxygen and hallucinations often occur. However, I have spoken with several people working in Hospice who say that the dying process is a sacred honor that they are humbled to witness. Many come to believe that what is taking place is nothing less than supremely divine.  I choose to believe that she generously shared what generations and generations have experienced before and yes, I will too…death is simply a transition, but letting go is hard.

One of my favorite sayings is “May you receive a gentle landing.” I know she was welcomed with open arms as she crossed over from this world to return home. She deserves the softest of landings.

I will remember and cherish her strong yet callused hands, her quick laugh, her equally quick temper, her love of family, the sparkle in her eyes, her giving spirit and her gently flawed humanity.

Mother-in-Love, I am blessed to have known and loved you. 

May her memory be eternal.

At our wedding, in the kitchen, 1981


What Just Happened?

November 15, 2019

Tuesday at 6:31 pm, SNMWO called and said, “Is this a good time to talk?”  My heart picked up speed and my palms were sweaty as I sent a silent reminder to myself to breathe.  I had that feeling you get in the pit of your stomach when something big is about to be revealed. He was calling to tell me that he had heard from Dr. Camidge about my biopsy results.

The biopsy went well.  The Interventional Radiologists (the “s” because there were two) found their target and extracted samples which pathology deemed sufficient.  Two hours later, Jim and I were home making dinner.

Then we waited. For 12 days we waited.

I was expecting one of the clinical trial coordinators to call letting me know that yes, I was eligible for at least one of the ADC trials.  What I wasn’t expecting was SNMWO calling to say they didn’t find the necessary proteins being tested for because they couldn’t find cancer cells in any of the samples. 

Excuse me…WHAT? HOW? WHY?

Is this good news or bad news? GULP…

He assured me that the biopsy team was top notch of which I have no doubt. I was with them for over an hour as they talked me through what they were doing. At least I think that’s what was happening. I was under the influence of happy drugs and only pretending I was awake. I do know the point of the needle could be seen inside the mass as this was a CT guided procedure. Four core tumor samples were taken with an 18 gauge needle in the area of the tumor where activity was seen on the PET scans in June and again in September. So how could this be? I know that solid tumors consist of cancerous as well as non cancerous tissue which is why scans are so important in this kind of biopsy. One or maybe two negative findings would be easier to understand than four. SNMWO and I are perplexed. The upshot is I won’t be starting a clinical trial and it’s been three months since my last chemo infusion. So far this year, I’ve spent more time off of treatment than on… so who’s complaining.

The next step is a PET/CT on Nov. 25th.  I have a follow-up appointment with SNMWO on the 26th to go over results and potentially start another line of chemotherapy, depending on what the scans reveal. Future clinical trials aren’t out of the question but I’m pretty certain each would require yet again, another biopsy.  SNMWO said he didn’t want to make me into a human pincushion and I reminded him that I get acupuncture once a week so he has significant ground to cover to catch up. It makes me happy to hear him belly laugh.

Peering through my rose colored glasses, I’m choosing to believe this is good news. However, I would be ever so grateful for your prayers and good vibes.

*For reference: SNMWO = Super Ninja Most Wonderful Oncologist

PATIENCE GRASSHOPPER

October 28, 2019

I did see Dr. Camidge; aka Super Ninja Most Wonderful Oncologist’s mentor, Director of the Thoracic Oncology Clinical and Clinical Research Programs at CU and lung cancer oncologist extraordinaire, on October 8th at 3:30 p.m. He was just as we remembered from my second opinion appointment, especially his sense of humor. “Love what you’ve done with your hair,” he deadpanned followed by a quick smile as he walked into the room. We discussed three Antibody Drug Conjugate (ADC) clinical trials taking place at UC Cancer Center that I might be eligible for and I signed the paperwork as Jim and I met gazes from across the room.  Any of these three trials sound promising but to see if I qualify, I first need another biopsy to determine if a certain protein (different one for each trial) can be found on the surface of the cancer cells which have formed about a one inch egg shaped nodule on the left side of my abdomen.  Each of the three trial sponsors gets a sample of tissue along with another sample for Dr. Doebele to retry a live cell line. If there is any left, we store it in the bio bank.  I might have all three proteins in which case we choose the best trial for me or I might have none. In that case, most likely back to chemotherapy and wait for another promising trial to open.

“So, when can we schedule the biopsy and get this show on the road?”  I ask with wide-eyed optimism.

Exit doctors and enter clinical trial coordinators.

Patience Grasshopper.

Three weeks have crawled by with a wedding and birthdays to celebrate, a successful fundraiser for SURVIVEiT, and a CT scan last week because of some pretty intense chest and back pain. The good news is the radiologist, medical oncologist and radiation oncologist ruled out pulmonary embolism, pleural effusion and disease progression in the lungs, chest, or upper abdomen. What we think is causing this jaw clenching radiating pain is most likely chest wall nerve damage related to the SBRT I had in January. I’ve had to resort to the occasional pain meds which is new for me but this is a marathon, not a sprint and I’ve been pretty damn lucky so far.

Thursday, October 31, is Halloween and also the day my biopsy is scheduled for. Test results will take another 10-14 days. I’m taking suggestions for a costume to show up in and I will consider all except the grim reaper.  Glinda, the Good Witch of the North, complete with ginormous pink dress and bubble to float out in is a viable option, especially considering the drugs they will be giving me. 

Yep, I think pink dress, bubble and good witchery is definitely the best option.

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The Good, The Bad, And The Not So Ugly

While traveling down this road full of pitfalls and glorious heights you learn a lot. Like how to bite your tongue when you want to scream. Or suggesting that everything is a-ok when you really don’t know. Or offering hope to someone else when you’re having a difficult time finding it yourself. Then for the umpteenth time, coming full circle to: no matter what, I still win! You find that you never knew you could dig so deep within yourself discovering who you truly are. Discovering what is actually important to you, not to everyone else…to you. Discovering that everything you ever wanted you actually already have, have had it all along. 

Let me recap the past few weeks.  Two weeks ago, I went to Dallas to share my story with about 200 conference attendees at Foundation Medicine’s (FMI) fall meeting .  These passionate folks are committed to making sure that genomic sequencing testing gets to everyone who needs it while helping advance the science of cancer care.

( https://www.foundationmedicine.com

You’ve heard me talk about this before, my commitment and belief that everyone diagnosed with cancer should get Comprehensive Genomic Sequencing testing.  It’s the only way to know what is driving a patient’s cancer and assure that the patient and their doctors have the information needed to access the best medical options available. 

I was treated like a rock star even though I never sang a note. Jen, Sharon, Maggie and a host of others, attended to my every need while making me feel welcome and appreciated.  I experienced the excitement of being on stage again, telling my story and confirming that FMI is making a difference in peoples lives, including mine. Sharing coffee and danish with FMI’s CEO, Cindy Perettie, was a definite highlight. FMI is definitely in good hands with this woman at the helm in my humble opinion.  It was a wonderful few days and I am incredibly grateful to have had this experience and opportunity. 

I returned on September 13, Monday the 16th I had scans and the next day Jim and I met with Dr. Narayanan, aka; Super Ninja Most Wonderful Oncologist (SNMWO). The PET/CT showed that the nodule we were watching grew and there are new mini spots lighting up in my peritoneal cavity, that’s the bad news.  Here’s the good news, that’s the only place we are seeing it. 

So where do we go from here? I was hoping that an EGFR/PanHer trial we’ve been following would be available but it’s not open yet and the biopsy tissue I donated in June to grow a live cell line wasn’t successful, there weren’t enough cancer cells. SNMWO suggested another chemotherapy we haven’t tried yet or Immunotherapy. He also suggested reaching out to the University of Colorado Cancer Center about a clinical trial and this is the direction we decided to pursue.  Kaiser approved the referral earlier this week and I’ll be seeing Dr. Camidge on October 8 for a consult.

Waiting, watching, wondering. That’s what I’m doing right now. If I am eligible for one of UCHealth’s clinical trials, I’ll be switching over my treatment location and meeting a new team. I have mixed emotions about not being under the consistent and watchful eye of Dr. Narayanan. While I know he will be keeping tabs and will always be my number one go to, it feels like losing a friend, a partner, my gifted and trusted doctor and the quarterback of my team. How can anyone else possibly fill the size 20 shoes I have put him in? My expectation is that the mentor will live up to the brilliance and caring of his student, for you see, my SNMWO was once a Fellow* to this highly respected lung cancer specialist. Having already met Dr. Camidge is a plus, he was my second opinion doc and I have run into him at events and requested his expertise over the past three years. I know I would be in excellent hands but keeping it real while sharing with you the inner workings of my mind, as it relates to the realities of my world, is therapy for me and one of the reasons I write and bake cookies.

Have I told you lately how much I appreciate you, your prayers, support and love?

Stupid crazy cancer.

*A Fellowship is the period of medical training, in the United States and Canada, that a physiciandentist, or veterinarian may undertake after completing a specialty training program (residency). During this time (usually more than one year), the physician is known as a Fellow. Fellows are capable of acting as an Attending Physician or a Consultant Physician in the generalist field in which they were trained, such as Internal Medicine or Pediatrics. After completing a Fellowship in the relevant sub-specialty, the Physician is permitted to practice without direct supervision by other physicians in that sub-specialty, such as Cardiology or Oncology. WikipediA

It’s Not About The Hair…Well, It Kinda Is.

August 18, 2019

Pre-cancer, when someone would ask, “What physical attribute do you like the best about yourself?” my response would be, “My hair!” I had lots of it and like my astrological sign of Leo, it was my mane. In the 80’s it was “BIG”. In the 90’s it was still “Big” but not as “BIG”. In the 2000’s, “BIG” became relative and I added highlights and color to my still long, but less “BIG” tresses. My hair spoke to me. It reminded me of my femininity and I was adamant about not cutting it until I was very old or no longer capable of raising my arms high enough to put my mane into a ponytail.

Chemo changed all that.  

In May of 2017, shortly after I started on my second line of chemo, I had my head shaved. I didn’t want to wait for the day when it came out in handfuls. What remained of my long hair fell to the floor as Hana applied the clippers, a precursor of the changes yet to come. The day was significant because I had members of my posse with me. We made a day of it, taking pictures, lunching, it was a celebration of female camaraderie and support. There were no tears shed as these women fortified me and  I didn’t dwell that day on my shaved head as my pate was quickly covered by a beautiful natural hair wig. Over the next couple of years, I developed a love/hate relationship with my wig. It was hot. At times it felt like there was simply too much of it. Traveling was a challenge as was washing and styling. More and more, I found myself with a baseball cap, ignoring the wondering and often times, pitying looks.  

Changing treatments allowed my hair follicles to regenerate and slowly but surely, my hair grew back. No ponytail, only sassy, spiky, easy to deal with short “BIG” hair.  It felt pretty amazing. My wig was placed out of sight, no longer a reminder of hairless days, relegated to a shelf in the closet surrounded by darkness behind a closed door. 

But, the last time I found myself facing chemo and losing my hair it didn’t hurt this bad. This time it hurt and I mean physically hurt. My dying hair follicles were screaming in agony as I looked at Jim with tears in my eyes and pleaded with him to use the clippers we use for grooming Tess to shave off my hair. Being the good man that he is, he complied as I cried. Hearts were breaking in the back yard as Tess, hiding hyper vigilant behind glass doors, made ready to run if the clippers came in her direction. After the deed was done and my hard earned hair growth was swept up and tossed, I once again plunked a baseball cap on my freshly exposed scalp and we headed up for a few days of mountain therapy. Grateful not to be in pain, grateful that there wouldn’t be hair falling out in our mini house on wheels, grateful for the respite of the mountains with my man and my dog. Grateful that I had a few days to process the return of this crappy disease.

My wig has reemerged from its previously relegated position as closet shelf placeholder.  Washed and trimmed, I wear it when I want/need to go cancer incognito.  With or without my wig, I can feel my leonine alter ego once again noticeably thriving. Perhaps a bit wiser, more realistic and most importantly…still alive.  

Treatment update:

The first month of treatment (infusions once a week for three weeks followed by one week off) is behind me.  I started round two on 8/12 and I’ll get a two week break following treatment #6 on 8/26, perfectly timed so that I can be in Dallas to speak at Foundation Medicine’s annual meeting in September.  Scans are scheduled for September 16 and I’ll get results from my Super Ninja Most Wonderful Oncologist on the 17th.  While my neutrophils are taking a hit, my tumor markers are responding favorably. The side effects are mostly the same as before, raw tongue and fatigue being most bothersome.  I continue to rely heavily on acupuncture, massage, meditation and Love to ensure I’m doing everything I can to help mitigate the damage to healthy cells while encouraging the medicine to work. xoxo


What Was That Again?

I wish you could read my mind

as it would clear up my words.

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July 9, 2019

There are many reasons I can think of that make writing update posts difficult. Sometimes, I am still in the throws of processing recent findings and I’m just not ready to go public with the news, be it good or bad. There’s also the fact that sometimes words are woefully inadequate to truly get across what I want to express. The reality is, I can’t control how you will interpret what I write or say and you can’t know how I struggle to get my deepest intensions across.

To make my point, these were the most impactful words written on my recent biopsy report: 

“Metastatic adenocarcinoma consistent with history of lung primary.” 

Packs a punch doesn’t it. I think the radiologist got his point across pretty well but I still came up with a few of my own interpretations:

1)“WOW! They must have gotten me mixed up with someone else.”    

2)  “I knew I shouldn’t have had those 8 desserts and 6 glasses of wine.”                           

And my favorite:

3)  “ARE YOU  F***ING KIDDING ME!”                                             

Denial 

Pain and Guilt 

Anger

I haven’t yet worked all the steps for this latest round but I believe Dr. Elisabeth Kubler Ross would still be a tiny bit proud.

After more than a week of discussions and opinions followed by more discussions and opinions, we decided today that the best option is for me to go back on systemic treatment. Since Taxotere and Cyramza worked so well for me in the past, I will return to a similar doublet. Taxol will be the drug of choice this time around along with Cyramza. This regimen won’t be as toxic, but the trade off is time; i.e., instead of getting treatment once every three weeks, I’ll be getting treatment once a week for three weeks with one week off and repeat.

I again say farewell to my hair, eyelashes, eyebrows and appetite and Jim and I will rekindle our relationships with the nurses in the infusion room. In the meantime, I’ve been digging deep and unearthing my backup mojo. Looks like I’m going to need it.

Sometimes the reality of this crazy cancer world I find myself living in, sweeps the rug right out from underneath me. Yet, while I’m floundering through the air, I can often catch a glimpse of sublime love and gratitude.

I know this because I’ve interpreted that God works in mysterious ways.

The COSMIC* Rollercoaster Ride

June 15, 2019

It’s not like I didn’t know this could happen.

It’s been pretty damn easy the past six months not having any cancer treatment. While it was strange only going into the infusion room to get my port flushed, this was purely maintenance. Things were looking good. An unplanned CT scan eleven weeks ago, because of issues which turned out to be blood pressure medication related, confirmed we were on the right track and we decided to stick with the planned six month PET/CT on June 11th and throw in the annual brain MRI for good measure.

“Your MRI is clean!” reported my Super Ninja Most Wonderful Oncologist.

“That’s AWESOME!” I replied. “How about the PET?”

Turns out the PET revealed two very small nodules near the left side of my bladder in the peritoneal cavity, each with slight metabolic uptake as well as slight metabolic uptake along the posterior margin of my uterus. “Well that doesn’t make sense…lung cancer doesn’t usually metastasize there.” we mused.

“Let’s get some additional eyes on this.” said SNMWO.

In short, I have a date with the Interventional Radiologist for a biopsy. It seems one of the nodules is fairly superficial and it shouldn’t be too difficult to get a tissue sample. Even though I would forgo furthering cancer research for zero disease, my cancer mutation is so rare that it isn’t in the COSMIC* database and there is interest in developing a cell line with a portion of said sample. While this research might not impact me, it could have potential future benefit for others. Passing it forward, doing my small part to help eradicate a disease that kills approximately 400 people every single day.

I’m not panicking, in fact I’m strangely calm.

We can see the radiologic changes in the lung from SBRT in January, but the lung itself looks good and the rest of my scan is clean. Choosing to focus on this golden tidbit of light and hope is now familiar, for I’ve been down this road before. Did I mention I’m one month short of my three year-stage four diagnosis date? Three years can seem awfully long…and awfully short.

Most importantly, I can still visualize a world without cancer. Its right there…can you see it?

*COSMIC is an online database of acquired mutations found in human cancer. Somatic mutations are those that occur in non-germline cells that are not inherited by children. COSMIC, an acronym of Catalogue of Somatic Mutations In Cancer, curates data from the Cancer Genome Project at the Sanger Institute. Wikipedia.

Where Everybody Knows Your Name

March 18, 2019

Today was Lung Cancer Support Group. Once a month, anywhere between five and twenty-five people gather in a basement meeting room at our Medical Center to be reminded that we are not in this alone. We show up by ourselves or with our significant others, take off our masks and deposit them in the trash bin by the door. Once we enter into this sacred basement room, we are enveloped by Lisa and Cecilia and Doreen. These remarkable women are our Lung Cancer Support Group Care Coordinators and they have created a sanctuary where we swim in the sea of shared experiences of pain, joy, anger, love, loss, relief and grief.  We squeeze together around a rectangular table and greet each other like they did on the TV sitcom Cheers. Except, instead of tipsy voices shouting: NORM!, joyful voices exclaim: ED! PATTY! ANNETTA! These three especially have shown us what tenacity, love and acceptance look like.

It took me months after I was diagnosed to show up at support group. I didn’t want to share my feelings, I didn’t want to admit that I had cancer.  What I imagined was a Twilight Zone version of a cancer twelve step program: “Hello, my name is Peggy and I have cancer”. To be completely honest, I initially resisted being in a support group because I was angry and I didn’t want to be reminded of the fleeting nature of life and death. I also didn’t want to feel the pain of loss.  If I hadn’t followed dear Cecilia’s encouragement, I would have missed out on this tightly knit group that expands and contracts. We welcome and release. We learn and we teach. We talk and we listen.  We laugh and we cry. We offer camaraderie and we offer hope.

Over the years, we have welcomed many new faces.  They arrive with that “deer in the headlights” look, the same look I had when I first walked in that door. Sometimes they come back and sometimes they don’t. Sometimes it’s just too much. Too much information, too much raw emotion, too much cancer.  It’s a group that no one willingly wants admittance to. We find ourselves here out of necessity and yet, no one understands our new normal better than the person sitting next to us. 

Having Jim at my side has been the greatest of all gifts. He joins me in being supported by this group and in turn, being supportive. Cancer after all, isn’t just about the person who has it. The commitment and love that is expressed by these incredible caregivers is so beautiful that I often find myself in tears when I hear them introduce themselves as husbands, wives, sherpa’s, cheerleaders, taxi drivers, lovers and teammates.

Some of the bravest people I have ever met sit around that table.

Yet, the last thing we think we are…is brave.

Telling Stories

We all have our stories. Our stories after all make up the tapestry of our lives. Several months ago, I was approached by Health Monitor Network wanting to feature my lung cancer story in their ‘Advanced Lung Cancer’ edition. A ninety minute phone interview followed by a 4 hour photo shoot and this is the final product. Jim and Tess handled their roles beautifully with Tess stealing the show showing off for the camera with a smile on her face and a dance in her step. She continues to amaze us with her resiliency.

I am honored and grateful that Health Monitor Network chose to share our stories, may they reach far and wide. Lung cancer remains the #1 cancer killer in the US, more than colon, breast and prostate cancers combined. Yet the dollars spent is drastically, unfathomably disproportionate in federal spending to other cancers. These statistics are beyond unacceptable and the only way the statistics will change is if our stories are told and action is taken. Share our stories. Change the statistics.

We ALL have lungs.

“Pay No Attention To The Man Behind The Curtain…”


the silent voice of the wizard whispers in my ear as I’m lying on my back, naked from the waist up, arms over my head, unable to move with a metal plate on my diaphragm. I’m trying desperately to not hyperventilate. There are cameras above me and I know someone is watching. The name Varian is imprinted on the space age machine hovering over me and I close my eyes and wait for ‘it’ to happen. 

Goodness, this sounds like a nightmare or a science fiction novel yet to be written. Instead, it’s my experience while getting SBRT to a cancerous nodule threatening to wake up in my lung. 

Other than having a metal plate locked into place on my diaphragm to ‘normalize’ my breathing this hasn’t been as bad as it sounds. Why the metal plate? I was told I was a very good Yogic breather – deep inhalations followed by long exhales. One would think this was a good thing but in this case, not a plus.

The staff is great. My doc is great. The medical physicist I’m told is great but I haven’t met him/her yet so I’ll take their word for it. The techs positioning me on the table are superbly considerate, professional and friendly, clearly explaining what they are doing and what will be happening. It took a week after getting 4D scans to come up with this treatment plan.  A tremendous amount of thought went in to mapping out the trajectory and how to give just the right amount of radiation to just the right areas while doing everything possible to avoid important things like nerves and bones and arteries.  So far, this treatment has been pain free and side effect free, everything that I was told it would be.

Jim and I will return on Monday, Wednesday and Friday this week for the final three SBRT treatments. When will I know if this has worked? Possibly not for six months. My next scan in two-three months will more than likely show an uptake in SUV activity because of inflammation caused by the radiation so the following scan will be a better indicator.

When I look back on the past two and a half years, I think I’ve done pretty well in confronting my fear, seeing it’s face and acknowledging what can be gained and/or lost. But, every time a new treatment arises, I must once again go back to the well and find more faith, more hope, and more strength. With help I find it, I always find it, but DAMN this is a crazy ride. 

While not very original this was a moment for me… I got my very first tattoos! I asked for something exotic with color, flowers and feathers but I was only allowed four tiny black dots for reference. Permanent reminders of a hopeful future. Too bad my insurance doesn’t cover body art. These tiny black dots are the beginnings of a new chapter and I think the completed picture will be quite lovely.

The awesome Kirsten and Ally with ‘Varian’ in the back