“You say I am loved, when I can’t feel a thing, You say I am strong when I think I am weak, And You say I am held when I am falling short, And when I don’t belong, oh You say I am Yours.” ~YOU SAY song by Lauren Daigle
I’m Starting this entry on Tuesday…..Travel day. I figured this would be a good way to pass the time as I listen to my “faithful friends” playlist. This playlist is a compilation of songs my friends have sent me over the past 5 months. I believe it now consists of 33 songs and that doesn’t include the ones People have posted on the Kate Strong Facebook page. The songs bring me great peace and comfort like most music does. I am four weeks post op today. I am so grateful things worked out like they did and surgery happened early on allowing me to be back to my active self as soon as chemo is done in August. The recovery has been a little more challenging than I expected. I've been honest during this entire journey- so I’m not going to tell you it was a cake walk! It certainly is different having a rod down your entire femur and screws that you can feel above your knee. I've had some PT but have done most of my stretching and range of motion exercises at home. I’m not running BUT I am up to a fast enough walking pace where my watch picks up activity!!! So I am finally getting “credit” for walking in circles around my street. In two weeks I should be cleared to submerge….. oh the healing powers of water- bath, ocean, bay, or pool- I can’t wait.
While home this trip I had my second round of chemo. It was rough with vomiting during treatment and yet pretty awesome. Hu? What? Chemo awesome??? Well it’s pretty darn awesome when my close friends knew how difficult it was going to be for me to sit alone during chemo for three days so they decided to show up each day and dance outside in the parking lot with signs. Yeah they did!! It was fantastic, they made me feel so much less isolated and completely “held”. This core of friends I’ve been blessed with have been walking through this fire with me all day, everyday and I am excited to get to the other side with them….. with everyone!
Last weekend I was invited to my friend's parents' church to be prayed for. No one really knew what to expect but it was simply amazing. Very powerful. There were so many ways that God was talking to me through the pastor's words and the music. There have been a lot of those “God speaking to me” moments over the last few weeks. I will read something and then someone will say it. Numerous friends have texted me images of rainbows appearing while they pray for me. Songs that bring me comfort are being sung or played in random locations. It's too many to mention but enough to share that there are signs of God's presence that I can not deny.
Aside from chemo there were no added medical hurdles this trip home. With the exception of one sodium check I have stayed in the normal range and have not had to increase my medication at all. I have labs today when I arrive but I am confident it will be normal Today and I pray that my neutrophils are stable enough to have chemo tomorrow (pending PET results).
Pause……. Currently Landing in Rochester- looking out the window wondering where the “welcome back Kate” sign is?
It was full steam ahead upon arrival. First stop blood draw at 10:05. They were looking at my CBC, CMP and TSH. My CBC was abnormal- since Friday, my white count only went up from 1.8 to 2, my neutrophils creeped up just barely into a possibly safe zone to give chemo at 1.004 (has to be over 1) and my Hgb and Hct both went down. My CMP showed that my sodium was normal at 137! And my TSH (thyroid) was normal (checked because of immunotherapy). 10:45 was PET Scan check in- same old same old! Wait about 45 min after check in for the radioactive tracer to be mixed, then go back and fill out paperwork, start an IV and BAM 1 hour after check in the Dotatate is ready to be injected. Then it was another 50 minute wait before they walked me to use the bathroom, got me on the table and by the exact 60 min mark (the amount of time it takes the tracer to get to every part of your body) the scan began. It comforts me to believe that people's prayer during all the PET prep has made this process easier every time…… or is it that I am just getting used to it? By 3 pm we were done for the day. As silly as it may seem this always tends to be the most relaxing part. It's the period between the scan and the results….. and I no longer have the dread of the test lingering over me, and I don’t have any results yet. So for a couple hours I feel FREE! Of course I was tired while I was “Free” I took a nap.
Wednesday: My appointments did not start until 10am so after some stretching my sister and I went out for a “little” walk, 4 miles later we returned. She was unhappy with me- to say the least. BUT it was a good way to waste time and keep my mind off the inevitable 10:45 follow up with Dr Dimou. Eventually we were out of time and after a quick XRay of my femur we were checked into Oncology. 🤢 I had a feeling that chemo was not going to happen, I was not sure if it was because of bloodwork or PET results I kind of just knew- scary how many times I have accurately “just known.” I was right again. No Chemo this week. Actually chemo has been CANCELLED not postponed……
Here are the facts, there is no way to eloquently write it:
The current treatment is not working well enough to continue, The PET scan provided a lot of information. The results were mixed. It did not surprise me at all considering how everything has been mixed. We know that there are some tumors improving and other tumors that are worsening and becoming more active. As of today they feel the tumor in my L4 is the most “dangerous” one as its SUV max doubled (SUV is the standardized uptake value and is a semiquantitative measure of the tracer uptake of a tumor the brighter the worse it is). There is one new tumor in my left hip that is not very active. We don’t know the size of any of the tumors just yet because they are not visible on CT images taken during the PET. Long story short There is just not enough improvement to stay on course with intense IV chemotherapy, so we will be discontinuing the current treatment course including the immunotherapy.
The meeting with Dimou lasted about an hour and half. He decided that it is time to switch the course of treatment to two oral chemo meds for two weeks on two weeks off- these meds attack high grade neuroendocrine tumors NOT SCC tumors. Eric feels Like this is what he wanted to do after round one of chemo but had to follow the recommendation of the tumor board. It was a lot of info at once so we decided that we will meet him again tomorrow (Thursday) to talk some more. In the meantime he is going to look into other top oncologists on the east coast and well across the US for us to consult with to get more brains involved. As said 1000 times before this is a very unique and difficult situation and there are no known therapies specific for treating it. He also plans to speak with interventional radiology about another injection type treatment, and consult with Dr Olivier about radiation. Dr Dimou is weary of Radiating everything because we NEED to treat systemically to stop the cancer from further progression and too much radiation can permanently destroy bone marrow which can make systemic treatment unavailable in the future. MRIs will be done tomorrow and Friday morning to look at the size of tumors and see if there is anything that did not light up on PET. That information will NOT affect the decision Dr Dimou made because based on PET results it’s evident we don’t have good control on the cancer and must move on.
After visit with Dr Dimou we went up to the 18th floor to see if Dr Natt could meet with us this week. When she heard we were there she came right out of her office to see us immediately. It was a quick, reassuring visit to discuss Tolvaptan and current sodium control regimen. She was as sweet as ever and felt that it would be best to continue on the medication, drinking to thirst, and 3 grams of NaCl. My sister told her how we talk about her all the time and what a hero she is in everyone’s eye since she was the one who figured this all out last year. She was flattered and in turn said that she too talks about me all the time 😊.
Dr. Olivier is on vacation but I did talk to him yesterday over text. He is unable to access reports and imaging while away but hopes to talk to Dr Dimou in the next few days. He is relieved that the images are finally showing that radiation worked. When initial scans showed no change and some growth of spots he was quite literally heart broken.
Here is the POSITIVE side of all this: It remains Hybrid and since it’s not fully responding to SCC treatment it COULD mean that less aggressive treatment may be the answer. Confusing right?? Less aggressive treatment could be better?? If I had a clear way to explain it I would try. I told the kids this: if you have a circle for a target and you have a BB gun or a bow and arrow with a really wide arrow head you initially grab the bow and start firing away because it is more aggressive than a silly BB gun…… but the arrow is too large and won’t go through the circle target, so you have to now use the BB gun and Viola…… those tiny, not so aggressive “bullets” get through the target!! Another Positive: there is only ONE new Tumor since May and we have to be thankful that the spots that were radiated are less active and shrinking.
It's now Thursday…. Day three…..We followed up with Dr Dimou and gathered more information. The appointment was one of the more surreal visits. There were a lot of keywords that I listened for that were not mentioned. Hope being the main one. And when that word was missing in a discussion of possible plans for treatments I became “that” chick in the oncology office, you know the one from the movies. The one whose mind drifted off and all the talk around her becomes distant and muffled. I didn't sit there and think negative thoughts, I sat there and thought- there is no way this is how this is going to play out. Yesterday I really felt like the images are not telling us everything, that they were wrong- and that thought kept creeping in my head as Eric and the doctor were talking. I don’t know what kept me sitting there. What kept me from just walking out. But I didn’t.
You know, I honestly thought all I had to do was push through chemo and immunotherapy and then get some time to live normally again and that doesn’t seem to be the case. It seems we will spend more time searching for effective treatment rather than living with it.
As far as a second opinion- we discussed which route we would consider, an oncologist that specializes in neuroendocrine cancer or a lung cancer specialist like Dr Dimou (I DO NOT HAVE LUNG CANCER BUT WAS ASSIGNED DR DINOU BECAUSE SCC IS USUALLY IN THE LUNG)? At Mayo, Dr Dimou has been working in collaboration with a neuroendocrine specialist regarding my case, and we feel consulting with such a specialist would be the best approach since we are not planning on jumping ship with Dimou. Right now it looks like MD Anderson Cancer Center in Houston is where he/we will be reaching out to.
Thursday was also MRI day! The scan was at 4:15 and included bilateral tibfib (lower leg), and right femur. The radiologist suggested not imaging the left femur because the rod will distort images and therefore could provide inaccurate information. The one big problem with that is we can not monitor the growth of the new tumor at the hip. This MRI was long and painful. Really painful. Really long. It was every bit of 2.5 hours long on a hard table with no pillow or support allowed under my knees. Somewhere during what I would imagine was the first hour my left femur started cramping, my heels started burning and my feet went numb. The pressure of my sacrum on the table, regardless of the pad under it, caused my back to tighten. And the physical stress collided with the emotional one causing tears to shed one right after the other. At 7pm I was done. Done on so many levels. The MRI of my L-spine was Friday morning before we caught our lyft to Minneapolis to fly home. YES fly home in time for Rylie’s birthday (and mine) on Saturday. I will have more info about treatment after a video follow up with Dr Dimou mid week.
So here are my thoughts, my take home, my prayer. I have started feeling like I NEED to take more charge in my treatment. One of the things I asked my doctor at home months ago was about complementary therapies- Cold therapy, acupuncture, food. I asked for guidance if any of those may help or be beneficial to add to the chemo. His response to food was “I wouldnt deprive yourself of anything that makes you happy at this point.” And I just took that. Which is not like me and will not be moving forward. I have been looking into different therapies not to replace medicine but to add to it. I am not sure it will make any difference but I have to try. Now that my leg is improving I hope to get back to exercising more. I am choosing to look at this treatment change as a way to maybe live a little more. And an opportunity to regain some “control”. In this really fucked up situation, I have to seek “control” wherever possible. I have to seize the good days and do what brings me and my family joy. I ask for prayers of peace, patience, and for reassurance of God's plan.Healing is coming I just don’t know what that looks like.
Side note….. Rylie asked me to leave a rock at mayo the Rock was painted at youth group and said John 1:5 on it. I left it in the flower bed outside the main entrance to the clinic not really remembering what that Bible verse was. I looked it up a couple days later “The light shines in the darkness and the darkness has not overcome it”
