Over The Moon

February 19,2021

There are dry spells and then life picks up speed.  These past couple of weeks, life has picked up speed… lots of speed. Good speed with good news interspersed with periods of waiting. Waiting for our turn to come around for the Covid19 vaccine. In most States, cancer patients have been delegated to lower phases.  Here is a guest post I wrote for SURVIVEiT about just this issue. 

COVID-19 Vaccines, Cancer & Priorities

Trying to get our Colorado Governor’s attention has been, shall we say, somewhat challenging. Patients and advocates have resorted to social media, media and print to do what we can. We aren’t interested in pushing anyone out of line. Our schools need to get opened and our economy back on track.  We are only trying to draw attention to the very real fact that cancer patients, especially lung cancer patients are at a much higher risk for hospitalization and mortality if we do get the virus. This also adds additional burden to our medical facilities. 

Next up on the speed dial is that my last two scans, which are interspersed 6 weeks apart, continue to show stable disease. This is good. I received clinical trial (DS8201a) cycle #9 Thursday and am still dealing with the after affects of steroids, first from pre-meds for the scan on Tuesday and again pre-treatment.  I’m hoping/praying/wishing to be able to sleep tonight. My side effects are becoming somewhat more manageable with anti nausea meds, acupuncture and a new approved supplement. My first ten days are somewhat blah with fatigue/nausea and the last ten to eleven days are much, much better. I am losing my hair again, just holding off shaving it until I can’t deal with the comb-overs and thinning. Third time’s a charm, I got this.

Now for the really, really good news– our first grandchild was born on Wednesday, 2/10/21 !  Early, just 33 weeks, and will be spending his first few weeks of life in the NICU at University Hospital. Our daughter was airlifted down from their home in the mountains while our son-in-law drove at a semi-acceptable speed and got to the delivery room just in time for the final two pushes.  Benjamin Lee was born at 1:49 am, 4 lbs 10.2 ozs and is a champ. He has been taken off the CPAP which was helping him breathe and is now on occasional supplemental oxygen. He’s still figuring out how to nurse while breathing and swallowing at the same time so he has a feeding tube to help him get the nourishment he needs. It’s a lot to throw at a little one from the get go. His parents are doing well, settling into the NICU alternative reality and spending most of their days and evenings hanging out with Ben. We won’t get to hold him until he is released which could be several more weeks, but we get daily pictures and his parents are staying in our lower level so we get personal updates for which we are grateful for. Having them here has been good for all of us in so many ways that it’s hard to describe effectively with words. 

Blessed, exceedingly, over the moon blessed.

2/10/21

First day off CPAP!

2/19/21

Rounding the Circle

November 30, 2020

The shining sun I am seeing is in sharp contrast to the nausea I feel as I watch a construction crane out the window of my infusion cubicle.  Today I am getting a liter of fluids and a bit of steroids to help with the nausea that is presently persistent but which does ease the farther out from treatment I get. The red arm of the crane is swinging too and fro, the bucket it is transporting disappearing from view as it reaches the roof of the hospital building in the distance. There is work going on and I’m enjoying the show and hopeful in the metaphor of some normalcy.

My scans on the 20th showed stable disease. Some decreases in tumor size were noted, some stayed the same, one perhaps a bit larger but perhaps unclear. A solid stable and we like stable, it means the drugs are working.  I can tell the drugs are working as I feel less discomfort, albeit the side effects of nausea have been challenging. On a good note, we did find a drug that is working on the vomiting. I hate throwing up as nothing makes me feel more sick than running to the bathroom to empty my stomach of it’s last meal. 

Treatment last Tuesday and Turkey for two on Thursday with our favorite trimmings followed by a dessert exchange with the neighbors was the highlight of our week. We met on the sidewalk and exchanged pie and cake, wished each other a distanced Happy Thanksgiving, our eyes and voices doing their best to express our feelings. We then returned to our twosomes and ZOOM’s and FaceTime’s with family filling in the loneliness gaps. 

In contemplating what I am thankful for this year, I found myself stuck. Ever the optimist, I was struck by the friends and loved ones we lost this year and wondering how I could spin the losses. I will miss Liz and her bigger than life personality and love of laughter, shopping and family. The hole she has left in our lives is very-very deep. I will miss Marly and her sweet countenance. I wish we could have spent more time together. I will miss Rebecca’s quick, sharp and brilliant wit. I find myself giggling remembering the swiftness of her retorts but I will miss her devoted friendship the most. I will miss Carol and her optimism and friendship over the past many years. She gave life her all, well done my friend. I will miss Patti and her exemplary example of fortitude and drive second only to her endless empathy. I will miss Bob and his love and support, his music and the gifts he blessed us all with. I’m beyond grateful to have the tangible examples of your master guitar and musicianship represented in recordings, videos and photos. Thank you for including me in the magic.

I miss them all. Every one of these dear one’s died this year from cancer except for one and their passings have left a depth of sadness. But I am also so very grateful for the time I was gifted with them.  We laughed, we cried, we played, we shared our joys and our sorrows. We created music and we created beautiful memories.

A Gift 

There is a balm that has eased the sometimes overwhelming loneliness and sadness of this year. We are going to be grandparents and our joy knows no bounds. Our daughter and son-in-law will be expanding their twosome to include one beautiful and loved being in the Spring. We couldn’t be more thrilled or more cognizant of the circle that is life. As we say farewell, we also say hello. The whispers of those who have moved on are ever present in our hearts and shared experiences and the joy of welcoming a little one into the circle is profoundly poignant. 

Around and around we go.

BIG MAC ATTACK

September 9, 2020

“Two all beef patties special sauce lettuce cheese pickles onions on a sesame seed bun.”

I pretty much adhere to a plant based diet.  Fish and chicken will find their way onto my plate for additional protein which I must stay aware of as it tends to drop easily according to my bloodwork.  But red meat appears rarely on my menu. I don’t have a problem making it for my knight in shining armor and I don’t have a problem saying no to the aroma or the flavor. Drive through fast food however occurs only when there are no other options and I try very hard to make sure there are other options. Imagine my surprise when I had a craving, and I mean a CRAVING yesterday for a Big Mac, a dietary delight I haven’t ingested in over thirty years. The experience was delightful even if I only ate half of it.  I’ve decided it’s all about the special sauce which squishes into the melted cheese on the hamburger patty which squishes onto the sesame seed bun with just a hint of pickle.  Suffice it to say that my craving was well rewarded.

I passed all the pre-screening tests for clinical trial DS-8201a and on September 1, I received my first dose. For those in the Lung Cancer community, you can refer to the DESTINY-Lung01 interim results that were presented at ASCO 2020, pretty exciting findings for those with HER2 metastatic NSCLC. No pre-meds are given with the first dose which runs for ninety minutes followed by a blood draw and then three to five hours later, a final blood draw.  Blood is held in high esteem as eleven tubes were drawn before the excitement could begin and I found myself wishing for a glass of orange juice and a cookie as I left the lab to proceed with my ten hour day.  I left tired but encouraged as I didn’t experience any infusion reactions and other than the long day, all went well. 

 Dr. Tejas Patil is my oncologist for this trial. He is quite brilliant and I am not shy in asking him questions which he spends time answering and explaining with hand drawn pictures and study printouts he shares with me. Oh yes, we are getting along famously. I’m also happy to report that Candice (PA), Nikki (trial coordinator) and Dana (Dr. Camidge’s nurse) are following me with this trial as well so there is needed and appreciated consistency and concerted care.

On day two I noticed some nausea and fatigue, and with each subsequent day the nausea and fatigue increased until I was having a very difficult time eating, drinking and staying awake.  I tried all my magic, acupuncture, ginger, more ginger, THC and eventually Compazine which barely took the edge off.  Yesterday, five pounds down and fairly miserable, I had an appointment for more bloodwork and a quick appointment with Candice who ordered a liter of IV fluids, dex and Kytril (antiemetic) and on the way home, the CRAVING hit with a vengeance.  

“Honey, I need a Big Mac!”

“You’re kidding???”

“NOPE! Like I really need one!”

I could barely get home before I opened the bag.

I can go back for more IV fluids if needed and I have an Rx for Kytril which I took again this morning.  The nausea is low grade right now and is a very common side effect of this drug. Everyone responds differently but the info on the patient sites for this drug are full of antidotes and stories, I am in good company and far from unusual.  I’m not sure if Big Mac’s will be added on a regular basis, I might branch out to an occasional Whopper or Bud’s has a pretty spectacular burger I’m told.

  Let’s just say, nothing is off the table.

For your throwback viewing pleasure 🙂

https://www.youtube.com/watch?v=dK2qBbDn5W0

P.S. –  SURVIVEiT fundraising update:

The Indiegogo and private donation campaign was a great success!  Over $41,477.00 to date to help launch the Cancer COPiLOT.  If you would still like to make a donation, you can visit our website: www.surviveit.org.

I was also asked to write a guest blog about my experience participating in a clinical trial during the pandemic.  Here is the link: https://www.surviveit.org/newsroom/bending-without-breaking-cancer-covid-19-navigating-now/

Finding Feelings

August 14, 2020

As I walked into the Cancer Care Clinic on Wednesday, I was pondering the last six months.  It seems forever ago that I had laparoscopic surgery to get good biopsy material for clinical trial testing. That was the end of February, pre Covid chaos as we now know.  A couple of weeks later and I’m not sure that this surgery would have been considered necessary.  To say that the last six months have been a walk in the park would be ridiculous.  It’s been hard, some days really hard.  Floating in and out and through these hard moments there have been mega doses of joy and love and gratitude. Let me focus on what’s important because the other stuff, the hard stuff while very real and must be acknowledged, is draining and I need more energy right now, not less.

Wednesday would have been my fifteenth infusion of the RAIN 701 clinical trial drug.  CT scans were performed on Monday and I got a heads up on what they revealed, progression in my abdomen. My lung remains stable but because of worsening progression and worsening side effects, I’m out of the trial.  That’s the hard news.  The good news is that a couple of weeks ago, my UC team sent in a frozen tissue sample from the February biopsy to be tested for a different clinical trial taking place at UC.  I received news yesterday that I qualified for pre screening which means that I am starting the clinical trial process over again.  There will be more labs, and scans and potentially another biopsy to begin next week.  

How do I feel about this? 

The RAIN trial proved challenging at times.  Going in for infusion every week was a new experience for me and most of the side effects were ones I hadn’t experienced before.  The best part of the every week experience was really getting to know my UC team.  They have been most extraordinary. Truly. I feel very good about this. 

However, another drug, my sixth line of therapy feels daunting. Why another clinical trial? Because dear reader, clinical trials are where the excitement is. This is the arena where ground breaking discoveries are being made.  According to a new article from STAT, (https://www.statnews.com/2020/08/13/lung-cancer-deaths-declining-faster-than-new-cases-due-to-advances-in-treatment/ ) we are making a significant dent in longer survivorship for lung cancer patients, something that was only a dream a few years ago and why I advocate for lung cancer research and participate in clinical trials.

If for some reason I don’t pass the pre screening I will be returning to my SNMWO at Kaiser. I’ve missed seeing him but we have kept in contact and I know that he is only a phone call or an email away if I need his support, advice and care.  

In other news, because life hasn’t stopped regardless of Covid and cancer, my Mom had a stroke a few weeks ago.  The hardest part for me is not being with her, my Dad and my family.  She has made exceptional strides but still has a ways to go. My sisters and extended family are doing a heroic job of making sure my parents are being taken care of and I am blessed to have such a loving and large family, but it wouldn’t be honest if I didn’t say that I am feeling quite helpless.

No, this has not been an easy six months but as my Dad is prone to say, “I woke up this morning and I’m standing on top the grass and looking up at the sky. God is good”. 

Stable

July 1, 2020

Cancer Terminology

Progression –  Means the cancer is spreading. This can be in the same area(s) seen at diagnosis or spread to other areas; i.e., organs, bones, brain, etc.

Remission – can be partial or complete. The cancer is shrinking.

Stable – the cancer hasn’t grown or shrunk, the disease in effect, has not changed.

NED – No Evidence of Disease. Can be short-lived or long-lived. If you remain NED for 5 years, you’re considered cured.

Mixed Response –  Some tumors have responded to treatment and others have not.  This can mean many things and is complex when it comes to treatment choices. 

The consensus from my latest scan is my disease is stable with one caveat, the two nodules my docs targeted for measurements each show a slight decrease in size.  While we were hoping for significant improvement I’ll happily take stable. Now what? Eight more weeks of treatment with tumor markers* checked in mid July and another followup CT scan in mid August. As long as I don’t have any new or worsening symptoms before then, and if markers and scans either remain stable or show improvement, I stay on trial unless side effects dictate otherwise.

That’s the down and dirty.  Going in for treatment every week does get old.  It’s a seven hour day between labs, EKG, care team appointment, pre-meds, infusion, followup vitals and another EKG. Side effects haven’t been too bad.  The initial rash, dry skin, fatigue, abdominal discomfort and diarrhea have improved and in the grand scheme of things, this is doable. 

In keeping with our new world of constant updates, UCHealth docs believe that what is driving my cancer is an EGFR ERBB4 fusion not a mutation. From a novel perspective, this EGFR ERBB4 fusion is a 10 on the 0-10 scale for novel. What this also means is that we have no roadmap.  I’m “Patient Zero”, either outstandingly unique or extremely unlucky. I’m going with outstandingly unique, mainly because I’m more of a glass-half-full type and extremely unlucky is just too negative and doesn’t fit with my “what you focus on expands” way of thinking. My daughter probably summed it up best; “Well Mom, conformity really isn’t your thing.” Not to fear, this could also suggest that new/old targeted treatments are back on the table and believe me, it’s good to still have options.

In other news, recently I joined with seven other Colorado lung cancer survivors and patient advocates sharing our stories, educating and pressing our elected officials to reinstate federal funds for lung cancer research at the 2008 level of $20 million dollars.  Currently, lung cancer is funded at $14 million, far-far too low for the cancer with the highest mortality rate in the world and $6 million less than was allocated in 2008. GO2 Foundation coordinated meetings with the offices of our US House Representatives and Senators with over 200 lung cancer survivors and advocates participating.  It was a memorable experience and I was glad to do my part.

Last week was also Turquoise Takeover sponsored by The American Lung Association – LUNG FORCE.  Myself and five other Colorado survivors shared stories and experiences which you can find on the American Lung Association Colorado FaceBook Page.

Also last week, Foundation Medicine re-mixed a previously recorded video with members of the Patient Community Council to celebrate Survivor Week. The link at the bottom of the page will take you to my Twitter feed if you would like to watch the video.

And lastly, July 19 will be four years to the day that I discovered I had something growing in my right lung.  Four years is significant in the stage four lung cancer world. Four years ago, we were talking about some day being able to treat lung cancer like a chronic disease instead of a terminal one. Today, we can say that within the last two years, more treatments have been approved by the FDA for the treatment of lung cancer than had been approved in the previous ten years! Yes, we are getting closer and we still have a long way to go.

The last four years have also revealed to me in ways previously unfathomable that resiliency, the ability to bend without breaking, holds within it’s sway a universe of boundless potential. I visualize my roots seeking the deep rich earth, creating the stability needed to counterbalance my ever swaying world above ground. My limbs are supple, my trunk is strong. My family, friends, medicine and magic have seen me through the past four years and I am resiliently stable, how about that for a dichotomy! I am also…eternally grateful.

It’s Raining, It’s Pouring

May 1, 2020

The RAIN 701 (Cohort C) phase 2 clinical trial at UCHealth is a GO.  I had all the tests; full body CT, chest CT, brain MRI, bone scans and labs to determine that I met all of the qualifications.  I am grateful beyond words that I have been included.  I’m also seeing how I have interwoven my interpretation of “failure” with the construct of control or the lack thereof.   Which once again bodes the question, “What is failure and how can one possibly fail at life and death?” This seems to be a theme for me.

I didn’t realize how unsettling this process can be.  This is evidence based medicine and there are rules to be followed.  The results must be measurable, meet the standards for replication and the rules complied with. The rules are stringent as this is where medical science meets a human being, a real living breathing person.  When my Dad worked in the lab for American Gilsonite and Standard Oil, he worked in the scientific sphere and I could grasp with my child’s understanding a tiny bit of what he found fascinating about chemistry. But my experiences have taught me that the Universe is fluid, constantly in flux, ever changing, ever morphing and there is a science to this as well.  I am mesmerized by the in-between but the fact remains that when conducting scientific medical trials, there are rules that govern outcomes.  

To throw fuel on the fire, Covid-19 has determined that everyone is now living with new rules. The rules at the medical center are strict.  Masks must be worn and unless you need someone to help you walk, only patients are admitted into the cancer center, at least for now.  

I didn’t have my person with me yesterday.  I didn’t have him with me last week when I experienced an infusion reaction during my first dose and ended up spending the night and most of the following day at University Hospital under observation. Cancer is hard to do alone on a good day and in the era of Covid-19, it can feel like even the good days take on a flavor of unfairness and heightened fear of the unknown. This is difficult for both of us. Jim has been with me for every appointment, scan, and infusion.  The disappointment and fear showed loud and clear in our eyes peaking above our masks as he dropped me at the door, spending his day waiting for phone updates. We are dealing with this new reality but it’s not been easy. I miss his steady presence, his watchful eyes and his comforting love beside me as I allow a study drug to drip into my veins.

My infusions are once per week and that day is extremely long.  I start the day with labs followed by waiting for the results.  This drug lowers potassium and so I take daily supplements and get my levels checked every week.  Next is a check in with my care team for symptom updates and a hands on once over followed by an EKG.  If everything checks out, I move to the infusion room for pre-meds followed by the study drug which runs for 90 minutes.  Then the waiting continues with EKG’s every hour for four hours to monitor any QT prolongation (interruption in heart rhythm) along with vitals.  Because of the infusion reaction from the first dose, we doubled my pre-meds, added another med and increased the duration.  It seems to have done the trick and 10 hours after Jim dropped me off he picked me up. I am impressed with everyone at UCHealth Cancer Center.  They have taken exceptional care with me and are as committed as I am to making sure I have the best outcome possible.  Scans will be done after 8 weeks to see how well the study drug is working.

During my waiting to qualify period, I decided to make cloth masks from fabric I have refused to part with. This box-o-fabric has moved with us to every new house for the past 35 years. Out came the sewing machine and I was reunited with my sewing table making retro fabric masks from the early 80’s and beyond. This has been a great escape and I think I’ve made close to 60 masks. Wearing a mask used to be for Halloween or bank heists, now you can’t go anywhere without one. What can be learned about our fellows by only looking into their eyes? It’s been said that the eyes are the windows to the soul. When we only have another’s eyes and body language to interpret what is being said, what do we see and hear? How comfortable are we with this intimate act? Better food for thought, how uncomfortable are we with either wearing a mask or looking at someone else with a mask? Do we hold the gaze or look away? I find that even eyes have masks that can attempt to hide what we are fearful of expressing. Eyes can also reveal the utter magic of a soul expressing itself in human form. Yes, this is a very intimate act.

And so fellow travelers, we continue to maneuver through our ever changing world. 

Stay safe, stay hopeful and stay loving.

Our New World

March 23, 2020

Surreal

sur·​re·​al | \ sə-ˈrē(-ə)l also -ˈrā-əl

Definition of surreal

: marked by the intense irrational reality of a dream

also : UNBELIEVABLE, FANTASTIC

*Merriam-Webster*

Trying times we find ourselves in. I’ve been working on my mental martial arts skills, rolling with the punches one could say. I wish this post could take on a broader, worldly “we can do this” tone but the wondering calls keep coming in and I must share my own personal update while knowing that we are all dealing with the surreal.

There could have been many updates I could have given since my surgery on February 27, but I was experiencing changes on a daily basis. The surgery itself went according to plan. Dr. S was able to take out the two largest tumors and neither was adhered to other organs so he was able to do what we set out to do laparoscopically.  I did so well that three hours after the surgery was completed, Jim and Lene brought me home.  There was one complication, however.  Most likely because of the antibiotics I needed to take for surgery, I developed an intestinal infection a week later.  The antibiotics destroyed all the good bacteria in my gut and the dangerous bacteria, that we all carry but normally are balanced with the good ones, led to the infection.  Not good at a time when there was a run on TP and cleaning products. Two weeks on a different drug and I am seemingly cured and repopulating with probiotics.  

There is good news as well. The research team at UCHealth was able to pick up a tissue sample and start a cell line, third time’s a charm. There was also more not so good news. I found out last week that I am not eligible for the two ADC clinical trials we were testing for. The specific proteins found on the surface of the cancer cells they were looking for fell below the 10% threshold.  Even if I was eligible, I was told that University is not screening new patients for trials because of the risks involved with COVID-19.  Double whammy.  

So now what?  Remember last year when I was hoping that a new cohort would open for an EGFR/PanHer trial?  On Tuesday, SNMWO messaged me to say that the next phase of the trial had been approved and my EGFR/ERBB4 fusion had been included. The best news I’ve had in 8 months and I don’t have any idea if/when I can start treatment.  This treatment requires weekly infusions at a medical facility where if the predictions come true, could become overwhelmed with COVID-19 patients and I am in the “high risk” demographic.

This is what “high risk” cancers patients are faced with:

  • What’s worse, disease progression or your chance of getting COVID-19?
  • If a patient goes in for treatment, could they be exposed to the virus at a time when the treatment itself is compromising their immune system, leaving them even more susceptible? 
  • In terms of new treatments, can the docs ethically expose patients to potential known and unknown side effects, risking hospitalization for a bed and medical equipment that might not be available?
  • Could we really be looking at:  “All we can do is hope our cancer doesn’t kill us before COVID-19 is under control?”  Are we talking weeks? Months? Years? Many don’t have that kind of time.
  • The reality is that the chance of survival drastically decreases for immunocompromised and at risk patients who do get the virus.
  • And here’s the kicker, at risk patients could fall to the end of the line when it comes to receiving treatment in a worst case scenario.  Choices might have to be made between them and someone who has a potentially better chance of survival. I truly hope it won’t come to this but the conversation is absolutely taking place.

Don’t believe me? 

https://www.forbes.com/sites/miriamknoll/2020/03/20/the-one-two-punch-cancer-and-coronavirus/?fbclid=IwAR3dyKSbQoNzPZwuSe9uf2AiPQiuobCTkEhLpBsiqvLfb4og7tq_-GY1SSg#3c4b5b8d58e6

I listened in on the web conference round table  mentioned in this article and it was sobering.

And from  © 2020 JNCCN—Journal of the National Comprehensive Cancer Network

…Ethical Considerations – “Beyond the care of the individual patient, oncology clinicians will face the heavy reality of rationing care. As the pandemic progresses, there will come a point when channeling a large amount of resources for an individual patient will be in direct conflict with the greater social  good.”…

I can’t get COVID-19, not now, not ever, so I’m isolating. Jim and Tess are the only ones I am in physical contact with. I no longer walk with my friends, but I am still walking. We wave at each other through open windows and utilize conference calls on ZOOM. I don’t go to the grocery store, my knight in shining armor has been but I’m strongly considering home delivery. We don’t do take out but we do take rides in the car. There is a spray bottle of bleach that lives on the kitchen counter and in the bathrooms, the house smells. Our hands are raw from washing but they are clean.  All this so that we can say we did everything we could to get me to the time when I can start the new treatment because life is still good, even with our current reality. In lieu of coffee dates, lunches and hugs, I’m spending lots of time emailing, texting and talking on the phone. I’m thrilled that the weather is warming up and I can be outside grounding myself in the garden. I try not to focus on the fact that the cancer could be growing. The surgery took care of our biggest emergency fears and my last PET/CT scan was “unimpressive” according to Dr. Camidge and unimpressive is good. I’m using all the tools in my self healing tool box, even the ones that I’ve shelved for the past 44 months. My years of study and practice in complementary medicine, which I have used alongside my medical treatment, give me a measure of continuity.

Jim continues to deal with the incredible and at times, overwhelming responsibility and believe me, I know that I am incredibly blessed by his love and devotion.  My prayers and good wishes go out to all of you for we are all connected in the grand scheme of things.  The interwoven Universal web reminds us that what we focus on – expands.  Let’s all do our utmost to envision the world we want, because the world we had will never be the same. We have an opportunity, let’s make the most of it.

Stay well.

WELL POO!

February 26, 2020

Moving quickly into TMI so if you are easily offended or have a weak stomach you might want to wait for a later post, just sayin’. My surgery is set for 10:00 tomorrow morning. Dr. S did a great job of telling us what to expect with this surgery but he left out one teeny tiny, little detail…four hour bowel prep the day before. Did the look of horror just cross your face like it did mine when I got the call from his nurse that I was to come and pick up a gallon jug of GAVILYTE and two antibiotic prescriptions? Now of course this makes perfect sense, he’s going to be probing my abdomen with sharp objects so let’s take all precautions. There’s also the slim possibility that he might need to do a bowel resection and we wouldn’t want any poo getting in the way. (I cringed even as I wrote that.)

If like me you followed your doctors orders and had your first colonoscopy at age 50, you should have already experienced this mature adulthood initiation. If you haven’t already, let me just say that GAVILYTE tastes better now than the ocean water they made you drink ten years ago. Here’s a few suggestions to help you through just in case you’re looking for ways to make the experience less shitty…pun intended.

Things I should have learned the first time around:

  1. ELASTIC!  Buttons, zippers or string ties should be strictly avoided.
  2. No slippery socks.  You will be running.
  3. Multiple hand towels. Good hygiene demands clean hands. You will be washing A LOT.
  4. Use the moisturizing, smelly soap you got for your last birthday and were saving for a special occasion. This is that occasion.
  5. Don’t look in the mirror every time you wash your hands, it’s depressing.
  6. The laws regarding time no longer apply. These fifteen minute increments are NOT the fifteen minute increments of yesterday.
  7. Use the timer on your cell phone and don’t forget to push “start”.
  8. Put your dog in her kennel or outside or tell her to remain on her pillow. Definite tripping hazard. Running in this situation does not suggest playtime.
  9. Ask the nurse lots of questions while you have her on the phone pre prep. Left over Compazine for nausea was a great suggestion. It also handles a sudden headache or schizophrenic episode.
  10. Warm clothing.  Drinking a gallon of cold liquid this quickly can drop your body temperature.  You wouldn’t want to be shaking so badly that you spill any GAVOLYTE.
  11. Yes, you still must drink liquids in between. It compounds the absurdity of the situation.
  12. Do not close the toilet lid. Seconds matter.
  13. Your nose will run. Buy kleenex.
  14. That stupid Charmin commercial with the dancing bears will haunt you when you realize you didn’t buy “pillow soft”.
  15. You might as well spend the last hour of this bad dream in the bathroom on the throne. Forget about running to and from to get your steps in on your FitBit.
  16. Dab don’t wipe. 
  17. Finally, even though what’s coming out is the same color as what’s going in…yes, you must finish the entire gallon.

Some posts take me just a few minutes to write, some take days.  This one took me exactly four hours. Done in real time, a new bullet point emerging as I sprinted to the bathroom and then back to my protected laptop. But hey, there’s still plenty of time left in the day to do laundry and drink clear liquids!  Are we having fun yet?

I would be extremely grateful for your positive thoughts and prayers for a good outcome tomorrow.

The Words We Use

February 10, 2020

After the words came out of my mouth I wondered why I said it that way.  “What about the uterus? If you find cancer there, can’t you just take the whole thing out?”  Like it’s someone else’s uterus, not the one that housed my daughter for 9 months or the one that cycled with the moon like clockwork for most of my life. While talking with the surgeon today I used words like “THE bowel, not MY bowel…THE tumors, not MY tumors…THE uterus, not MY uterus”.

I was distancing. Seemingly, it was easier to think that these were someone else’s organs, someone else’s tumors rather than the organs that I was born with or the tumors that are calling my body home. There is safety with distancing. It allowed me to discuss with a degree of understanding the anatomy we were talking about. It also allowed me to assure Dr. S that yes, I am quite aware of what stage four means without blame or fanciful expectation. Once I got home though and sat with the information we had just received, it became abundantly clear; everyone today was talking about MY body. The risks and the rewards would fall squarely in my lap, quite literally.

It was a good consult. We wanted to see if a laparoscopic approach would yield a better tissue sample for clinical trial testing as well as getting a good sampling for developing a cell line. Jim and I heard much more than what we bargained for and our conversation on the ride home was sparse as we were both deep in our own thoughts. Dr. S is on board to do the surgery but we did get an education on the realities. Please refer to your Grey’s Anatomy episodes for visual reference, there’s a LOT going on in there. Many of you have asked “why can’t they just take the tumors out?” They can but only if they can get to them and only if my tumors are not adhered to other organs.

We all have about five feet of large intestine perfectly coiled inside our lower abdomens. Inside of my pelvis (and yours if you are female and still have all your parts) I also have two ovaries, one uterus, and a bladder.  In addition, all of us have abdominal muscles, various tubes, arteries, veins and other necessities for sustaining life. In a perfect world, Dr. S will be able to remove both of the tumors we can see from the scans. In case he can’t fully excise the tumors, he will try and get a larger sample than we have been able to get in the past.  Just to be clear, this is not a “curative” surgery but it could be a “pre-emptive” surgery to head off a potential bowel blockage emergency. If he can’t get to the tumors with the laparoscope, or if the tumor(s) are adhered to the intestines, he might have to resort to an open approach.  Time spent in the hospital could be just that day or several, depending on how much he has to do.  

Believe it or not, this is the stripped down version of what we heard today. Veering towards the positive, this is a good time for this particular surgery.  Yes, it’s an aggressive move but after weighing the pro’s and con’s, all indications, soul searching and expert opinions point to this being the best next step.  As far as scheduling is concerned, Dr. S is trying to get me in as soon as possible. The stars and schedules (his and operating room availability) are working on aligning.

Getting back to MY uterus, Dr. S has no intention of removing it. It stays with me. 

Good News/Bad News Deja Vous

January 22, 2020

I’ve been here before.  It’s not a comfortable place to be, but it is familiar.  My PET/CT from November 27, confirmed that there was metabolic activity in the two nodules in my peritoneal cavity. These two areas didn’t appear to be aggressive but they still showed signs of growth.

We decided on Gemzar (Gemcitabine), an older drug reported to be a bit easier than the previous lines I have been on.  On December 3rd, Jim and I showed up in the infusion room and Joe hooked me up to the IV pump.  No need to pre medicate with antihistamines and steroids with this one, just a little Zofran for nausea.  Until my ears and throat started itching, that is.  It would seem that I’m one in like, hardly no one, who has a reaction to Gemzar.  Joe stopped the IV, administered Zyrtec and Dex and we waited.  I remained upright, breathing and conscious and the itching stopped so we slowed down the infusion rate and rallied on.

Let’s just say Gemzar wasn’t kind to me and I was glad that a scan was scheduled after four infusions to see if it was working.  That scan took place Friday, January 17 and good news/bad news, I won’t be getting Gemzar any longer.  The PET/CT showed continuing mild progression in the two nodules but the rest of me is doing just fine.  No cancer detected anywhere else.

Once again, SNMWO has reached out to Drs. Camidge and Doebele for their valued opinions but also because qualifying for a clinical trial at UC is still the goal. Now that the largest nodule measures almost two inches, the hope is that a new biopsy will deliver the viable tissue samples needed for accurate testing. We are also expanding our clinical trial arena to see what other trials might be worth looking into.

I wish the damn stuff would just go away. In the mean time I sit in a familiar space, living in a surreal amusement park where the roller coaster morphs into a gentle giant teeter-totter, then into a red whirling dervish, then to a beautiful and slow carousel only to find myself back on the roller coaster, and so on and so on.

Sounds a lot like living life doesn’t it?