Struck by the synchronicity: On November 7, 2016, I was sitting in the infusion room getting my first doublet dose of chemo, looking at a 5% chance of surviving five years and feeling scared, overwhelmed, sad, mad and fragile. When I look at the picture of myself and that first infusion, I can’t help but wonder where that woman has gone. She was angry and pissed off that she was being asked to walk this path, and rightly so. I feel so much compassion for what she/I went through on that day. Determined to make the best of a crappy situation, spinning her wheels trying to find someone or something to blame. She/I was afraid of becoming a burden and of not being ready to say goodby.
November 7, 2022, six years to the day later, I was a floor away from that same infusion room preparing for my umpteenth PET/CT, laughing and chatting with familiar faces about Thanksgiving plans. I am having a difficult time putting into words this juxtaposition of events. Am I still that woman in the picture? Six years of cancer treatment has changed me, how could it not? I’m a specialist now when it comes to my own personal disease and there are times when I’m still sad, mad and fragile. My biggest fears remain the same, I am most afraid of becoming a burden and of not being ready or willing when the time comes to say goodby. I have the blisters and calluses of a trekker and the vision of a seeker, walking a road that I wouldn’t wish on anyone.
In May, when I was in the hospital with a small bowel obstruction, I came the closest to date to facing my deepest fears. There weren’t any good options if the obstruction didn’t resolve on its own and I found myself at the mercy of fate. One of the surgeons bluntly told us that even if the obstruction did resolve I needed to prepare myself for more of the same, be it weeks or if I was lucky, maybe I’d get a few more months. My cancer was once again progressing and the damage was all too clear.
A lot can happen in six years, a lot can happen in six months. My November 7 scan showed no change from the August scan, “Scan is stable…No growth anywhere!” . There are a couple of lymph nodes we are watching, my tumor markers remain in normal ranges and while I am still dealing with treatment side effects, I am not noticing any cancer symptoms. Mobocertinib has been a miracle drug for me and I cannot thank those responsible for stepping out of the box and prescribing and supplying this drug enough.
Six years since that first chemo infusion and five months into my seventh line of treatment I find the emotional roller coaster exhausting. But I’ll take it.
I’ve been delaying getting my teeth cleaned. Yes, I know, a healthy mouth means a healthy heart but my heart hasn’t been the number one concern. First, it was Covid and my March 2020 cleaning was cancelled. When I got the notice that it was once again safe to visit my dentist, my nausea was so awful that the thought of sitting with my mouth propped open for an hour brought on anxiety dreams. But six years of chemo caught up with my teeth and my two front uppers as well as the lowers began to chip. This was not a good look. I knew what was coming, they were going to take one look at my mouth and declare a massive overhaul. If I’m totally honest, I wasn’t sure how much longer I was going to need teeth so I’d need significant convincing for this to be a sound investment. I was ready for the “just make sure I can smile without embarrassment” discussion. Then I got my scan results from last Thursday’s PET/CT.
First line from the IMPRESSIONS section:
“Excellent treatment response with near resolution of all FDG avid malignancy. “
The tears of relief were instantaneous as Jim and I embraced each other, shocked at the turn of events and overjoyed with the reality of the findings. “Near resolution” means that there are a few spots that show a bit bright but the vast majority of the metastasis is gone or shrank significantly with virtually no activity.
I’m still pinching myself, astounded by the significance of this report. My cancer symptoms had disappeared shortly after beginning the new treatment but the scan offers validation. Yes, I am still dealing with side effects but the scales most definitely tipped towards life and I am overwhelmed with gratitude.
It’s affirmative. I’m going to need my teeth for a while longer.
On May 5th, I was scheduled for a PET scan to see how things were going since starting back on Enhertu after February’s surgery. Prior to the scan, I told Melissa, my radiology tech, that I had been experiencing gripping abdominal cramps, nausea and vomiting for the past couple of days. Of all the scans I’ve had in the past six years, Melissa is probably the most familiar friendly face. Knowing that what I was experiencing was not normal for me, she requested a stat reading of my PET results which were questionable but inconclusive according to the radiologist. Feeling worse and already at the medical center, I checked into Urgent Care where a CT without contrast (meaning I didn’t have to pre-medicate with steroids, yay!) showed that I had an obstruction in my small bowel and I was auto admitted to the Hospital. I spent a very long six days (worst Mother’s Day ever) pacing the hospital floor with the occasional hall pass to walk outside with Jim and Tess keeping me company in the parking lot. For the most part, I didn’t have to deal with hospital food. IV fluids only for the first few days, progressing to a liquid diet followed by a soft diet of jello, pudding and yogurt. Eating, simply being able to eat anything solid and keep it down became the objective.
Small bowel obstructions that don’t resolve on their own are typically referred to surgery, and we consulted with three different surgeons. In my case, surgery was not an option. A reverse NG tube to drain gastric juices would have been the next step, buying more time with hopes that the blockage would still resolve on its own and making for less pain, nausea and vomiting. So what could they do if the blockage didn’t resolve on it’s own you ask? Keep me as comfortable as possible. I heard myself reprising the same old refrain that repeated like a stuck record in my brain when I was first diagnosed, “ARE YOU F&*^ING KIDDING ME!” Simply put, I didn’t feel sick enough to die but I also know that that’s not a prerequisite. It did feel like a sucker punch even though I’ve known that this could be a complication since the moment I found out that the cancer had metastasized to my abdomen. This part of the story has a happy ending, the obstruction resolved on its own. On the day that I was released, I kept down a half of a piece of toast and a few bites of cream of rice cereal which was beyond exciting! I left with instructions to follow a low fiber diet and promised to return to the hospital immediately if things changed.
To add another layer of uncertainty, disappointment and worry to the mix, scans also revealed that after 18 months on Enhertu (16 months in clinical trial) my cancer had progressed and I began the process of qualifying to try an oral targeted therapy, off label. This proved difficult from the standpoint that even though Dr. Patil at UC had first suggested I try this approach and Dr. Narayanan seconded his suggestion, Kaiser would not approve this drug’s use for my one of a kind mutation. After two denied insurer appeals, the drug manufacturer approved me for their financial assistance program and I am getting the drug delivered monthly at no cost.
Starting a new treatment as I’ve said before is challenging in many respects. Emotionally, I dealt with the changes it would mean when it came to drug delivery. My previous six lines of treatment have all been infusions. On treatment days, I would see my doctor and then head over to the infusion center where the room was full of other patients and nurses to watch over us, making sure there were’t any infusion reactions (of which I have had several) or any other problems. Being surrounded by professionals who knew how to handle any situations which might arise was always a comfort. I signed for and accepted this drug at my front door. Jim was saddled with the responsibility to watch over me, phone at the ready in case he had to call 911. We actually discussed driving to the hospital where we would wait in the parking lot as I swallowed my first dose, you know, just in case. It took me an hour and a half to muster the courage to take those first four pills and I’m happy to say that all went well. I understand this anxiety is reversed for patients who start out with an oral chemo and then need to switch to (or add on) infusions. I can say with authority that these changes are challenging and life altering. Every. Single. Time.
With my new oral targeted therapy I take four pills everyday. Instead of a big hit every two to three weeks (plus pre-meds), I get a smaller hit every day (without the pre-meds). Side effects are also different with this drug. Diarrhea has been the most challenging, I didn’t even know this kind of diarrhea was possible. Constipation was one of my previous complaints with all the other treatments I had been on. Between the steroids and the anti nausea drugs, I became very familiar with stool softeners, magnesium and fiber. I have expanded my knowledge base to now include Imodium, Lomotil and Rice Crispy Treats (actually good for combatting the big “D” – who knew!). Luckily for me the low fiber diet I am on is also what they recommend for helping with diarrhea so there is a faint silver lining to this. For any cancer patients reading this, my nutritionist, Mary, recommended a product called Enterade, designed for cancer patients consisting of amino acids and electrolytes which I believe is helping a good deal. My SNMWO and his oncology nurse, Jamie, are keeping a close eye on me and I feel supported. As unpredictable and uncomfortable as the side effects are, I must also say that I have noticed a reduction in the cancer symptoms I had been experiencing making a strong case for continuing.
I will see my SNMWO again in a couple of weeks with scans the end of July or first part of August. We are hoping to take our mini house on wheels for a few outings this summer once I can get the big “D” a bit more under control. Time with Ben and his parents is always great for lifting our spirits and he is growing into a toddler force to be reckoned with. We are having so much fun 🙂
As always, I am eternally grateful for the Love, prayers and good wishes coming my way. Truly the best medicine there is.
Oophorectomy. Actually, a Salpingo Oophorectomy, that’s when they take out the fallopian tubes along with the ovaries. Not a hysterectomy, the uterus stays to stand guard over the nether parts.
My ovaries…that’s where the cancer has been very slowly increasing for the past many months. Must mean that the treatment I’ve been on has stopped working, right? The answer is not necessarily that definitive. Cancer care is complex, as much art and intuition as science. When what might be considered oglioprogressive disease presents, the idea is that just that area(s) can be treated with surgery or radiation therapy, like what we did with SBRT (stereotactic body radiotherapy) to a right lung nodule in January of 2019. Other areas remain stable and hence make this surgery a good option. Another very significant reason to have my ovaries removed is that they are still small enough to take out before they potentially cause further trouble.
Two years ago, I began my clinical trial journey with UC Cancer Center, Lung Cancer Clinic. Clinical trial number one was RAIN Therapeutics’ Tarloxotinib, under the watchful eyes of the imminent Dr. Ross Camidge, Candice Rossi, NP and clinical trial coordinator, Nikki Conti followed by clinical trial number two, DESTINYLung01, with the brilliant Dr. Tejas Patil and clinical trial coordinator, Josh Saginaw, RN. My last appointment included not only thoroughly reviewed suggestions from Dr. Patil for ongoing treatment but a few tears as well. I will miss them and am forever grateful for the compassion, empathy, dedicated care and friendship they have so generously extended. I’ve been assured that I can still consider them members of my oncology team and that has made this transition easier.
Instead of totally changing gears with a new drug, (Number 7) we decided on treatment plan Number 6.5: Salpingo Oophorectomy and continue with Enhertu (clinical trial drug which was granted Breakthrough Therapy Designation for NSCLC (HER2) by the FDA since I began the trial). What is true is that Enhertu has been very effective and we believe that I am still getting clinical benefit, despite the ovaries. I am once again back in the expert care of my SNMWO (for those new to the blog: Super Ninja Most Wonderful Oncologist) at Kaiser, Dr. Vignesh Narayanan. Dr. Sarah Whittier, gynecological oncology surgeon and robotics and laparoscopic specialist, will be performing my surgery this Thursday, February 17 and I will resume treatment March 7.
I’ll have had a nice long break from treatment, my last infusion was on December 30 and my body is responding well. Enhertu’s most troublesome side effects have been nausea, dehydration and vision issues. Acupuncture helps as does energy work and anti nausea meds. Most recently, I’ve added CBD oil daily. Now that the side effects have mostly resolved, I’m gearing up for the restart of treatment with mixed emotions. One day at a time.
For now, I say goodby to my ovaries and thank them for a job well done. Without them, we would not have been blessed with our incredible daughter who along with our loving son-in-law, gave us the gift of becoming grandparents!
I experienced a Christmas miracle this year, yep, a downright honest-to-goodness miracle. My December scans showed resolution in the area of my lung that we were concerned could be progression. All other watched lesions fell within stable parameters and we didn’t need to be concerned just yet with a change in treatment. Christmas Day was spent watching Ben diligently rip the paper off his presents to get to the surprises inside. At ten months old, he was a bit confused with our delight at watching him do something that didn’t seem that out of the ordinary. Paper shredding is a favorite pastime. We on the other hand, found Christmas magic in his every move.
As we fast forward to my January scans, a size increase in another watched tumor was enough to be logged as progression and I am out of the trial. While it has been at times challenging, I am grateful for the 16 months I was in this trial. We saw shrinkage of my cancer burden and until a couple weeks ago, stable scans. I am also beyond grateful for the amazing professionals I’ve met through this trial. Your expert care and friendship has been instrumental in the treatment’s success and I recognize you for the angels you are. So what’s next? My spectacular oncology team has already set into motion next steps. I’m feeling good and in a good place to try another treatment and so I will. I’ll share more when the i’s are dotted and the t’s are crossed.
We had an interesting discussion at our last lung cancer support group meeting. When is enough, enough? We often find ourselves moving in starts and stops from a hypothetical question to one that can become all too real. Quality of life and balance become catch phrases as we maneuver through our unique uncharted territories. We all do this our own way, in our own time and there are no right or wrong answers.
Before I was diagnosed, I remember making the statement that if I was ever diagnosed with stage 4 cancer and my only option was chemotherapy, I wouldn’t do it. It was easy to make this statement then, I never believed I’d ever have to make that choice. Let it be said that there are innumerable shades of gray in the black and white lines we draw in shifting sands. I have a unique perspective from where I sit, watching the lines continuing to blur in and out while contemplating my seventh line of treatment.
And so here we are. I welcome the continuing adventure and will do my best to meet it head on with authenticity and of course – Love.
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.
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:
ELASTIC! Buttons, zippers or string ties should be strictly avoided.
No slippery socks. You will be running.
Multiple hand towels. Good hygiene demands clean hands. You will be washing A LOT.
Use the moisturizing, smelly soap you got for your last birthday and were saving for a special occasion. This is that occasion.
Don’t look in the mirror every time you wash your hands, it’s depressing.
The laws regarding time no longer apply. These fifteen minute increments are NOT the fifteen minute increments of yesterday.
Use the timer on your cell phone and don’t forget to push “start”.
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.
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.
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.
Yes, you still must drink liquids in between. It compounds the absurdity of the situation.
Do not close the toilet lid. Seconds matter.
Your nose will run. Buy kleenex.
That stupid Charmin commercial with the dancing bears will haunt you when you realize you didn’t buy “pillow soft”.
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.
Dab don’t wipe.
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.
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.
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.
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.
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
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!”
Pain and Guilt
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.
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.
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.
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.
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