I suppose there is quite a bit to update everyone on, but I often find that I hesitate to update because I’m usually waiting for the next news or next doctor appointment to clarify the plan. The plan is ongoing, which is great (I function best on a plan), but it makes it feel like there is never a period or exclamation point at the end…it’s just a bunch of ellipses (I think that’s what you call the dot dot dot). Here is the update on where I am medically…
We had another trip to Tampa last month to do a fancy-pants PET Dotatate scan, blood work, and meet with my doctor. My iron is low, which may explain why I am fatigued so often and becoming Captain Catnaps. I will have to start iron infusions, which fortunately I can do at Northeast Georgia instead of having to fly to Tampa. They also want my weight to come up, so calories trumps sodium at this point. If I can eat low sodium, then great (that helps keep my bloating down), but the higher priority is to slap some cheese on basically anything, chug some milk and eat a steak…weight gain and high protein is the first goal. They want me to eat 70g of protein a day, which may be normal but is a LOT for me! We feel like Forest Gump at our house but instead of shrimp it’s steak. We eat steak tacos, steak burritos, grilled steak, steak burgers…you get the point.
We also learned that I will start a new form of treatment that is basically a shot in the butt once every 28 days. Mike told me that this form of shot is referred to as a “butt dart.” HA! I wish he were kidding, but apparently, I’m about to start getting butt darts. This treatment more than likely won’t shrink my tumors, but it will stabilize them. Why am I going on a treatment that will not shrink my tumors, you ask? Good question. It is my understanding that there are several reasons…1- my weight, iron and platelets are low, so starting a major treatment could be risky. 2- the weird lump on my chest needs to come out, so they can figure out exactly what that is and make sure my tumors aren’t trying to metastasize in weird locations (like a lump in my chest). When we went to Tampa the lump on my chest (which I’ve already had removed once before) was very “angry,” large and sensitive. It hurt to touch, and it looked like a golf ball was going to pop out of my chest…sexy, huh?! What I forgot to mention was that my day in Tampa doubled in doctor appointments rather quickly. Before I left meeting with my doctor, they sent a dietician down to speak with me, then they sent me over to a neighboring building to meet with a breast oncology nurse practitioner (to examine my chest lump), then do an ultrasound, then do a biopsy…oh, and more blood work. The nice thing about Moffitt is that they cater to you and will try and do all that they can to help you even if I’m only there for 24 hours. The tough part was that it was a long day for me, and by the end I was in tears from being poked, prodded, pricked, mashed and just emotionally drained from everything. It’s hard to take all the information in, understand it, think what important questions to ask, and process all the news you’ve been given.
Let’s back up a second and talk about the dietician…my new best friend! I explained to her that trying to find low sodium options for breakfast but high in protein (while easy to fix and eat amongst getting 2 boys under 7 out the door on time) was proving to be hard for me. She asked me what my preferred breakfast was, which I sheepishly told her, “an egg and cheese sandwich on toast from our local country kitchen called Papa Jacks.” She said (this is where we became best friends), “Great! Eat that every day!” WHAT?! Really?! That’s amazing! Okay! We’re done here- you can find me at Papa Jacks every morning now! Sold! She explained that there would be sodium in the cheese and bread but not an insane amount, and the egg and cheese would be good sources of protein for me. Woohoo! So, if you would like to stalk me then you can find me in the ole PJ drive through at about 8:45 every morning.
Next event was seeing the nurse practitioner at breast oncology. Now, my chest lump is almost on my sternum, closer to my clavical, so don’t imagine this is the average breast oncology appointment. I don’t think I’ve opened a can of worms with an entirely new type of cancer for myself (yet). I have never seen a breast specialist, and let me tell you I have never been that felt up by a woman before in my life. It was a little awkward for me; I’m not going to lie. She was very kind, and I had to remind myself that she does this all the time…it’s just a little weird to have someone all over your boobs by a person other than your husband! Just sayin’! Fortunately, she didn’t find any areas of concern, so they decided an ultrasound (vs. a mammogram) would be more informative. The ultrasound was very uncomfortable because they had to mash so hard on the lump, and it was very sensitive and painful. I thought I was done after that, but then I started getting instructions and paperwork for a biopsy before we had to race to catch our flight. So much for grabbing that delicious (high in sodium) cheeseburger from Portillo’s on our way to the airport! At this point, I was getting wiped. I was out of steam and starting to feel the emotions creep on me. My lips were chapped…why? WHY? Why could I not find one darn Bert’s Bees chapstick in all my stuff? I have them everywhere, and the one time I needed one I could not find it. Mike had to go buy me Carmex in the gift shop, so I could find a little comfort for my lips. I swear I was close to having an orgasm when I finally got to put on that lip balm- magical!
What was NOT orgasmic was the biopsy. They have to ultrasound the lump so they know where to navigate the needle (which was still painful), then they have to give me several lidocaine shots to numb the area (which was painful), then they use this catheter type thing that looks like it has a hook on the end of it and we all watch on the ultrasound where it’s navigating. Once they find the spot they want to take a sample it makes an awful clicking noise (imagine a toy gun firing) and it sucks in a sample which puts pressure on the chest lump that is already sore to touch. This whole needle in, find what you want, take a sample, fire the toy gun thing ends up happening 5 times. The third one I started to feel more pain because they went deeper, so they had to shoot me up with more fun-fun lidocaine. It was not pleasant to say the least. I was in tears. I hit my wall. I was done. Then I had to go downstairs and get more blood drawn. When I got in the car, I just cried. I was just done. It was a lot, and we still had to race to the airport, drop off our rental, catch our flight, get our truck, drive to my parents to get the boys before my day was going to be over. Mike knows the way to my heart though and bought me a super cool neck travel pillow with memory foam. Best husband ever! He buys me Carmex and travel pillows. I am going to keep him.
So, what’s next? I start the iron infusions to help my iron levels improve and also help my energy. I start the butt darts which should help stabilize the tumors which are once every 28 days. I go back to Tampa in a few weeks to see a sarcoma doctor to discuss removing the chest lump (which has shrunk dramatically, by the way). I’m not sure if the biopsy helped relieve some pressure or what, but it feels and looks much better. It still needs to come out though and tested to make sure we know what it is exactly. The biopsy shows that it’s an Atypical Lipomatous Tumor (ALT). They are rare tumors (ha- no shock there…of course what I grow on my body is rare…why would it try to do something common) but benign which is the good news. They said they were a little concerned with how some of the cells appeared though, so the verdict is: it’s gotta come out! After that, we’ll know when I go back for that to be removed, and we also have a genetic counseling appointment to figure out if this is something that I could have potentially passed on to our boys or not. Fingers crossed that I did not, but if it is a possibility for them I would definitely like to know in order to stay on top of anything that might arise. Possibly, after my iron, weight and platelets come up, and this chest lump is removed then I could get off the butt darts and start a treatment that will actually SHRINK the tumors. I can’t get off the diuretics until that tumor shrinks because I’m still dealing with bloating. I am also starting to get my back pain again which AGAIN won’t go away unless we shrink the tumor or I get another nerve block. It’s like a circus, folks! BUT I take it one day at time, and all I can do is put one foot in front of the other. That’s all any of us can do.
I have learned one other thing. If I look at my life, every pocket is amazing. I have an amazing husband, I have 2 great kids, I have loving-helpful-supportive parents, I am fortunate to get to be a stay-at-home mom, I still get to coach competitive cheerleading, I get to teach BodyFlow, I live in a great home and neighborhood, I have fantastic friends…the list goes on and on for all the great things. So I have ONE pocket that isn’t great, and that’s my medical pocket. It’s just a pocket though. It’s just one pocket. The rest is a blessing and beyond amazing. THAT is what makes it easy to put one foot in front of the other and focus on the good because there is so much good!