Results and Plans

“Victory is always possible for the person who refuses to stop fighting” Napoleon Hill

 The Biopsy 

Biopsy day was Monday, April 12 and it threw us another wrench, at this point I feel like I deserve a trophy for the “World's Greatest Dodgeballer” with all the curve balls being thrown (I suppose that would make me more of a baseball great 🤔) The setting was like all others warm blankets; cold hard tables! Strangers' faces becoming those of friends that provide reassurance about the procedure. Fear being replaced by comfort from these “friends” and the prayers that my real friends pray for me at the time of the procedure. What was originally scheduled as a biopsy of the mediastinum was changed at the last minute to a biopsy of my left proximal femur. Here's the lowdown on why: The radiologist who was performing the biopsy was not 100% confident that he could get a good enough sample- and in order to attempt to retrieve a sample from that tumor he would be drilling into my sternum. Given the risk of complications of such a procedure in that general area and a lack of confidence at success he was approved to just drill into my femur instead! Yeah Me- Bone biopsy coming right up! Yup, just rolling with the punches. The reassurance from the radiologist was comforting and with just one more hiccup before the procedure we were all set. A hiccup? You know a last minute “panic” among the medical staff about my polysorbate allergy and the medication they were going to use for sedation. Fortunately after verifying with pharmacy that neither sedation meds contained the preservative I was able to drift into a nice relaxed state. Everyone's first question is always, did it hurt? Sometimes, depending on my mood, I wish to respond with “What, you think it would be fun to have some drilling into a bone while you are awake to obtain a specimen to learn more about your cancer?” But honestly it did not hurt. My only advice would be not to look at the screen and watch the drilling- just saying. My leg actually felt great during and immediately following the procedure, it was the walking thing after that was a challenge. My knight and shining armor was there to help and he fetched me a carriage (aka a wheelchair) and pushed me all the way back to the hotel! Which for the record was a mile down the road, not attached to the clinic- it was an adventure to say the least. The site was tender and weak but I was up and walking a couple hours later. 

Consult with Dr Olivier

This was not the social visit we had intended. His plan was clear, radiate all the spots right now and get rid of them. They are growing too fast and becoming too active to wait around. The radiation would be much different than last year and consist of high dose radiation over 5 days NOT 26.. He did a lot of hand holding (emotionally and physically) and as always made me less anxious and more hopeful. There were some very scary future complications/preventative procedures discussed with the biggest one being the necessity of protecting and stabilizing my femur. The integrity of the bone, although currently stable, is becoming compromised by the tumors growing inside. Considering the largest and most active of the leg tumors is in the greater trochanter (aka hip area) and the amount of vessels in the surrounding area complications could be vast if it were to fracture because of the tumor. His exact words were “it would be a life altering event if the bone fractures”. Given that I am an otherwise very healthy active 42 year old runner placing a rod is a question of when not if. 

On top of that fancy little bonus surgery I will also need to get some cement in my C7 to stabilize my spine post radiation. The “complication” with all of this is that surgery will delay chemo by 6 weeks- if that is indeed how we will proceed with systemic treatment. Dr Olivier has since consulted with his “betsie” and a top notch orthopedic surgeon and had him look at the X-rays that were done earlier. He feels the bone is stable enough to wait a couple months, but would like to revisit a plain film X Ray after radiation. (Radiation softens and destroys not only the tumor but the bone it is in). Pain should be and will be used as a guide to how quickly this surgery will be.

On an emotional level we talked a lot about the sleep I had been being deprived, the anger that I am allowed to feel and his eternal optimism. He admitted to losing sleep over me😌 and again reassures me that my team is working together and with the best of the best to solidify treatment plans. 

The FDG PET

The setting was like all others warm blankets; cold hard tables! Strangers' faces becoming those of friends that provide reassurance about the procedure. Fear being replaced by comfort from these “friends” and the prayers that my real friends pray for me at the time of the procedure…… Oh wait I already said that….. Well what can I say it really was the same thing day after day- test after test- procedure after procedure. All kidding aside, my tailbone hurt more than anything else at this point in the game because of those hard tables. 

Tuesday, April 13 was a busy day that started with a regular FDG PET, ended with a COVID test and had Radiation simulation stuffed in the middle. The FDG PET lowdown: Why another PET? Typical SCC will be evident and show the same activity on FDG as on Dotatate. Dr Dimou was suspicious of whether or not the activity would be the same, less or equal to that of my Dotatate. He speculated that, because of the part Carcinoid part carcinoma pattern already seen, there would be some activity but not as much as seen on the Dotatate. This scan would be helpful at navigating where to go from here. 

Radiation Simulation

The setting was like all others warm blankets; cold hard tables! Oh hell, You get the point! The final step for this weeks trip was Tuesday afternoon and it was to prep me for Radiation which was scheduled to start Monday April 19. This simulation was nothing like last year! Last year was a breeze compared to this. YIKES. I feel like a picture is worth a Thousand words so maybe I should just refer you to the photo at the end of this entry. 😬Dr Olivier did warn me that it would take a while and that I would need to be molded for a mask but his prep for just how awful it was going to be was a C at best (Yes he is fully aware that I grade him on his care 😂) If I had to sum it up in 2 words, WATERBOARDING and Jason (The Friday the 13th mask wearing freak). Imagine if you will, a “slip grip” we put under area rugs, now dip that into hot water, place it over your face, neck and chest as you lay on a tile floor. Then tack the ‘slip grip’ down to the ground so tightly pressed against your face that you can not even blink your eyes open. Let it sit for 5 minutes molding to your face and hardening- that my friends is how that went! And that is what will keep me perfectly aligned during radiation of my neck and chest. The leg simulation was a piece of cake after that! And I was provided with 4 more tattoos, which for the record are just as boring as the ones last year and look like little green freckles! After about an hour or two the simulation was complete and the rest of the prep was now in Dr Oliviers hands. Which meant I could make it home for Dylan’s birthday…….Just as soon as I had one more test...a COVID test. 🤢 Radiation can not begin until I am tested so that is how I got to end my day Tuesday- with a swab up my nose! 

The Results

Biopsy: It is in fact the same cancer as last year and morphologically thymic Small Cell Carcinoma (SCC). 

FDG: Dr Dimou was correct, there was some obvious uptake but not as much as on the Dotatate. What this means: Carcinoids and Carcinomas range from low grade to high grade. 0-20 is low grade carcinoid. Anything over 20 is High grade with a typical small cell being 80-90. I am 40. Technically high grade carcinoma- but atypical for SCC. 

COVID test: Negative- Finally GOOD news. 

Video Call With Dr. Dimou: Friday afternoon we had a video follow up from home where Dr Dimou gave us the above results. He also informed us that on Monday morning my case was being presented to the Mayo Clinic Tumor board for review and a meeting of the minds. He already has a plan in mind but wanted to get as many other oncologists and specialists input. I see him tomorrow (Wednesday) to hear all about the systemic treatment plan but it sounds like high dose chemotherapy and immunotherapy. 

AND NOW ITS TIME TO FIGHT LIKE HELL!!!

Radiation Days 1 and 2

Blahhhhhhhh. Insert whiny pouty pathetic face. Day 1 was Monday April 19 and was terrible. Suffocating. As described in the simulation this now hard molded mask/helmet is now placed across my face and strapped to the table. A deep breath- impossible. Swallowing- difficult. And of course when it's hard to swallow all you want to do is try and swallow! Radiating The neck and chest were the worst lasting close to 30-45 min before they removed the “suffocator”. I thought i did well but when it was all over I was asked to try and stay more still next time- MORE STILL?!?! I am physically clipped into the table. Lol. 🤨🙄 the back of my head felt like i sat too long at the salon with my hair being washed in a porcelain sink leaving bruises in the back of my occipital bone. Dr Olivier saw me after treatment yesterday and came in for a hello during todays.  He too grades me and I am improving from a borderline A- to a solid A in the staying still for radiation dept. I Attribute that to my increasing the ½ a xanax from yesterday to ¾ of a tablet today and did much better. Going for the A+ tomorrow. Two down 3 to go! 

I'm doing ok- trying to keep my wits about myself and find laughter everyday. We returned here Sunday evening are staying in a hotel attached to the clinic again so getting around is much easier and need I say warmer. I am fairly certain I can write reviews on multiple hotels around the area, and may be looking at a part time job as a tour guide. To allow more time at home Sunday am we flew into Minneapolis and took a shuttle to Rochester. As we entered into The mayo clinic area it took all I had (combined with Eric straight up telling me to stop it) to not give all my fellow shuttle passengers a tour of the sights along the way. Getting home was good medicine! Seeing family, friends, sleeping in my own bed, watching Rylies swim meet, all of it was just a touch of normalcy. The next update will be much sooner than these last few have been as I am sure to have tons of info coming my way this week. 

Happy 17th Dylan! 

Hard to see but image on the left is FDG (showing less activity - blue- than what would be seen if actual SCC) and the one the right is same tumor on Dotatate (picking up the activity more clearly-bright red- making it more of a High Grade Neuroendocrine Carcinoma) Also, that is Dr Dimou in the bottom square. 

Here I am and This is the famous mask I wear for radiation

Meet Dr Olivier, and check out the spots on my face from how tight the mask is!

Faith Hope and Love

I cannot get the line, “faith, hope and love and the greatest is love” out of my head. Without love there is no hope or faith I suppose. I am blessed to have so much love in my life because through that love I have hope and faith. That being said I hate all of this!

Can I just be honest for a second, be completely vulnerable before I update everyone?? I hate everything about this. I hate the knowing and not knowing. I hate the questions and answers, I hate being away from home and hate being away from my doctors here. I hate the fear and yet I am scared of the peace. I hate that my kids are going through this and I cant comfort them. I hate when the devil makes me think of dying and at the same time I hate when he dangles the ongoing battle in my face like its a bad thing. Thats not a bad thing! Ugh, I even hate the word hate! It takes energy to focus on faith hope and love. But I do love so much and am loved by so many so I cling to that. I love my husband and am so lucky to have him. I love my family, Friends, army of supporters and prayer warriors. I love that I can find comfort in prayer. I love my doctors. I love the days I feel normal and even the days I dont because everyday is a blessing. 

We arrived back at Mayo on Tuesday April 6, I felt pretty horrible traveling so it was no surprise that my am labs showed my sodium down 8 pts again! I had a very full two days of scans on Wednesday and Thursday. I joke that I was more radioactive than Imagine Dragons this past week. I had a Dotatate PET scan,MRI with and with contrast of the Femur, MRI with and without contrast of Cervical spine, CT with and without contrast of my chest, abdomen and pelvis, and a plain film X-ray of my femur. The days were very long with a Lot of sitting around for Eric so it was nice to have Michelle there to keep him company and give him someone to talk to. 

In true Hybrid fashion, There were mixed results when we saw Dr Dimou on Thursday afternoon to review the scans. The scans used at Mayo are more sensitive because they use Q-CLEAR PET so comparing them to home images is not exactly apples to apples (whether that means its Red Delicious to Honey Crisp, Granny Smith to Fuji or apples to oranges I don't know). Regardless It does not appear that there are any obvious “New” lesions identified which is really very good news. Some tumors have mild growth, some almost doubled in size, and some have not grown. Most all of them lit up brighter and are more “active”which means that they are secreting more ADH - hence my sodium dropping. This means that the injection of Sandostatin did not work as they had hoped. Dr Dimou assured us that there remains hope. He acknowledged that this is scary and was perfectly empathetic. The news (as well as just going through the testing) was indeed scary but I must say that I held it together better than I thought I would and I can only attribute that to the prayers that are being offered up for me. LOVE.  I almost feel better knowing we will be getting more information sooner rather than later now that the first treatment plan was unsuccessful. 

I've got to tell you all…...I am “breaking” Dr Dimou! He is a very professional, extremely smart (Yale Fellowship), corky, and Greek! Like Greek Greek- He graduated from University of Athens Medical School! Last year when we met and he planned my Chemo and when I met with him a couple times we could not shake hands because of covid. This year when we came back in February and had our first meeting I asked if I could shake his hand and he awkwardly agreed. Before we Left in March he extended his hand first. This week he took my handshake and pulled me in for a HUG! Yup, I am breaking him! LOVE

The very next step is tomorrow and that will be a CT guided biopsy of the lesion in my right mediastinum (upper chest). This will give everyone more information about what these tumors are made up of, what the morphology is, as well as how similar or different they are from last year. The procedure is outpatient.  I will be heavily sedated but not under general anesthesia. It should take 4-6 hours total from check in to check out and I am scheduled for 7am- another bright and early morning. If you’re gonna rise you might as well shine! 

Following the biopsy is a consult (which was already scheduled more as a social visit) with Dr Oiliver for consideration of Radiation. I text with him over the last few days and informed him that it's time for him to come off the sidelines as the self proclaimed cheerleader and join the game. He tells me he will have his “game face on” and is ready to kick some “serious thymic cancer butt.” He has much faith that I will get †hrough this. 

Dr Dimou also mentioned a consultation with orthopedics as well to discuss the tumor in my femur which is the mass that is most active and has shown the most significant growth. We have not heard if that is happening or not. I believe that decision was going to be made based on X-Ray and stability of the femur. We hope that surgery to stabilize the bone will not be necessary. More to follow on that. 

The last test that is pending insurance approval for Tuesday is a regular FDG Pet Scan. Why? Well because of the hybrid nature and lack of research available on this Dr Dimou wants to see if there will be any activity that is not somatostatin receptor activated (tumors not activated by the dotatate which would be non hormonal tumors). This was scheduled for last week but was denied by insurance. 

As far as next treatment. No solid plan has been identified and will not be until we have the biopsy results but many options have been presented. We all remain hopeful and have faith that something will work. And it will because we are surrounded by so much love.