Cycle 2 and Pence Visits Mayo

This week marks our sixth and final week here in Rochester. Woot Woot! I wish I could say it went by fast but that would be a lie. I can however say that perhaps it is a little bittersweet.  The reality is that Mayo Clinic not only saved my life but it changed my life.  I am not sure how anyone can come here as a patient and leave without a new perspective on human kindness.  As I mentioned before this health system is what all medical systems should strive to emulate.  It’s a simple approach, put the patient first. I know this experience will forever change my approach to patient care as a Nurse Practitioner.

Thursday was day one of round two and for once, it was uneventful!  Eric likes to joke, “no drama today Kate!” and Thursday was drama free. IV infusion went seamlessly, and the pain was not as bad as round one.  I am uncertain if it was because of the allergic reaction, all the Benadryl and steroids or the stronger dose of meds that made round one so much worse but round 2 was not too bad. And no its not because I am some crazy specimen of a being- it probably has to do with the fact that I took every anti-nausea med available to me and max dose of Aleve and Tylenol! HA! After the spine and joint pain following round one I wanted to be proactive.  Saturday was my last dose of chemo for this cycle and I was determined to get out and enjoy the day. I thought it would be fun to do a half marathon walk, Eric thought I was crazy. You see, I am stubborn! Shocking I know! Some think stubbornness is a flaw, I would venture to say its my strongest asset- esp these days. I was much slower than usual but after 5 hours, we completed the 13.1 miles! To date, based on my Fitbit calculations, Eric and I have walked 168.37 miles since arriving at Mayo……wondering if I can make it to 200 miles before we leave?? In all seriousness, walking has been what gets me through these long days. The fresh air, endorphins, and the sheer utilization of hours has been therapeutic.  I wish more than anything I could do some Yoga but the steroids have not been kind to my ligaments, muscles and tendons and at this point its just too painful.  I am hoping once I get home and can soak in some Epsom salt and detox from radiation bending over and touching my toes won’t be such a struggle anymore.

Hair update: Well, I am not sure if chemo is finally not being such a bitch or it is being a complete sarcastic bitch! Basically, my hair is taking the long road to baldness. I feel like a golden retriever. The shedding is INSANE!!!! The bald spots are becoming more and more noticeable, and when the wind blows through it I can feel the breeze on my scalp. HAHAHAH. Weirdest feeling in the world. Every time I run my brush through it there is about as much hair in the bristles as there would be if I had not cleaned it out in a year. Hair gets everywhere, even in the pockets of my pants- true story. BUT I still have some and it looks like I will be able to wait until I get home before the big shaving- which at this point is going to be very liberating.  

On Tuesday, April 28 Mike Pence was at Mayo Clinic! (Yes, I know, he wasn’t wearing a mask). I had already missed the “Mayo Singer” performance while here so I was NOT about to miss the VP of the United States. I saw on the local news that he was landing at Rochester Airport (in Rochester, MN (LMAO)) at 11:40 am so I ventured down to the clinic around 11:30 allowing time to get through regular Covid screening and any increased VP visit security.  I had strategically called in a refill Monday in case I was not aloud on campus until my radiation appointment time I could at least have access to the pharmacy. I aimlessly wondered around the clinic atrium on the subway level until I spotted a group of employees playing it cool up on the lobby level. In hopes that they had top secret information I befriended them and found out that he was bought in through one of the non-main entrances but would be coming through the Gonda building main entrance for photo shoot after he toured the campus. I spent the next 30 minutes walking around trying to decide where to position myself when out of the corner of my eye I saw TV cameras outside. Clearly that was where I needed to be. Long story short after about an hour or so of assessing the actions of camera crews, secret service, road closures, and snippers I decided to move towards the Gonda Building entrance and hit the JACKPOT! The director of public affairs had arranged for hundreds of mayo staff to line up to be greeted by the VP and I landed myself right in the mix. By no exaggeration at all I was one of maybe 5 non employees there. Mission accomplished.

When I relocated from my original outside post, I ran into my “Cancer store” friend Lori! The one who went to her car to get me Clorox wipes when we first arrived in March. I had run into her a couple times before and chatted with her in passing but it was so nice to see her and spend the next few hours chatting with someone other than Eric.  I should mention, Lori is in the know! She was able to get us the scoop on ETA, where to stand, etc because she is friends with the director of public affairs. She pointed out all the big wigs that were in line waiting for VP Pence and Low and behold we ended up talking to the CFO of Mayo Clinic for almost an hour. I even got to see Elvis the Mayo singer! Finally at around 3pm, 15 minutes before my radiation appointment the motorcade finally came through and Pence got out to greet the health care providers, employees and MYSELF. LOL

I had my last appointment with Dr Oliver and we came up with a pretty solid plan for follow ups. I like him more than the medical oncologist (who is also great, I just prefer Dr Oliver) so I was happy he was so willing to take charge on follow ups.  September, at 3 months post completion of chemo, I will have a brain MRI and Chest CT. We will continue with CT of chest every three months with Dotatate PET as needed. Although I will have to have my local oncologist order the scans he assured me that both he and Dr Cassivie (surgeon) will be reviewing them.  As a result of the thymectomy (surgery) and radiation I have already started developing scar tissue around my pericardium, this can be confusing and raise unnecessary alarm with radiologist who are unfamiliar with cases such as mine. He said that not many radiologists have experience in reading images like mine and he doesn't want an "over reading" to  cause us any unneeded stress and at the same time he doesn't want to run the risk of them missing something again.
On a quick side note- The medical oncologist here sent my tumor for a molecular test and it did not reveal any mutations in any gene interest, ie the cancer is not genetic. This is very reassuring and great news!

Finally this week a co-worker at my office designed, ordered and is giving out "Kate Strong" bracelets and I have been getting pictures of people wearing them.... I know I say it all the time but I miss work!!!!!
Again, the support I have had is humbling. Truly blessed.SO all in all things are good, cycle two was not to bad, my hair is waiting for me to get home, I saw the Vice President, and I am almost done with radiation!!! My next post may just be written from the comfort of my own home!

Cycle 2 Day 1 

13.1 miles same day as chemo day 3

CFO of Mayo 

Air Hugs with My Friend Lori from the Cancer store

Kate Strong Bracelet Photos 

                     

April 20- Round 2 of chemo attempted

Round two was nothing, it did not happen. At least not yet. Before each round of chemo I have labs done to check my liver and kidney function, magnesium, and most importantly my CBC. The CBC is a complete blood count that looks at White Blood Cells (the cells that fight infection) specifically the Neutrophils, as well as Red Blood Cells to make sure I am not anemic and Platelets (the part of your blood that forms clots).  Chemotherapy medications affect they way my bone marrow works and cause neutropenia, low neutrophils, which puts me at greater risk for infections. Because of neutropenia, administration of chemo meds has to be separated by three weeks. The medications they are giving me have a nadir (the time when my WBC are at its lowest as a result of chemotherapy) at day 10 post treatment with recovery between day 14-23. What this means is that 10 days after treatment I have no immune system for 4 days and then it starts to rebuild. Why am I explaining all this??? I failed my blood test. Yup, failed it! My Neutrophils on Monday were still less than 1 (or 1000 depending on unit of measurement). Administering chemotherapy while neutropenic is a really bad idea because it will just make my risk of severe infection greater. Throw in there a little Covid-19 pandemic and it is NOT a good situation. Not only do both chemo drugs I am on cause neutropenia but  radiation does as well so my low levels 23 days after treatment was not a huge surprise to my oncologist.  I on the other hand was surprised, I feel fine! No symptoms of neutropenia at all. In fact Eric and I went for an 8 mile walk Saturday and a 10.5 mile walk Sunday.
There is an injection available that they can give patients to help boost there neutrophils but unfortunately it is contraindicated with my radiation therapy. Oh the things I have learned! So now what? Well first of all they have to decrease the dosage of each medication by 20% for the remainder of treatment.  This was a little worrisome because I went into this thinking the medications and dosages they chose were the best way to make sure I have complete recovery, and now they are decreasing it.....does that mean I will not be getting the medications in the BEST possible way. I went through this when they had to change the IV Etoposide to oral after reaction too. Dr. Dimou reassured me that this not only was safe but that it was protocol he had to follow, and well he knows way more than me so I am just going to take his word on that. The only real "problem" is that it just delays the completion of treatment. Thursday at 6:30 am I will have my levels checked again and I pray that my neutrophils are in the "safe" range.  If my neutrophils have recovered I will be able to start my second round that morning. Really hopping it does not get delayed any more because then I am at risk for flying home during the Nadir phase.

Things around the clinic campus are starting to pick up since when we arrived. It certainly is not even close to how it was in February but there is starting to be some signs of life again. One of the shops in the atrium has reopened and the corridors have more people.  Its nice to see that they are easing up on the restrictions that they had in place and are allowing more non emergent patinets in. I often wonder what it would be like to go through all this NOT during a pandemic. I have a folder that the oncology department gave me that has a list of free classes they offer ranging from yoga and meditation to art and music therapy. Unfortunately all the programs have been canceled as a result of Covid-19. Anyway.

The weather today is the warmest it has been in Rochester in over 200 days....and its only 70. This past weekend was really nice in the upper 50s.  As I mentioned before, Eric and I went on two really long walks this weekend. On Sunday we wondered up and down the streets of a super cute, super hilly neighborhood (called Pill hill because it is where many of the original Mayo doctors lived). One of the houses had a garden flag post in the front yard where they had "Joke of the day" hanging (see below for picture). We came across a dog that looked exactly like Mason, they way he sat, his face/nose, even his head nods. We must have stood in the street talking to this dog for a sloid couple minutes. As we wondered about we came across a sign for the "Plummer House". We had no clue what the heck it was or what to even expect but we had nothing else to do so we followed the signs. Turns out it is an 11 acer historical landmark estate where Dr. Plummer used to reside. In 1901 Dr. Mayo asked Dr. Plummer to join the Mayo Clinic Staff. Plummer went on to set up the medical record keeping system, designed many Mayo buildings, and invented the pneumatic tube system.  Today the house still has all the same furniture and decorations and serves a venue for parties and weddings and attracts many to its gardens in the spring (However, its the end of April and nothing is in bloom yet)Obviously the inside was closed to the public right now but we were able to at least stroll through the gardens and imagine what it would look like with everything in bloom. And now you learned something new!

Today I had my 15th radiation treatment, 8 more to go!!!! The only new side effect this week is that my skin is starting to turn red and get irritated at the site of beam administration. I had another follow up with Radiation Oncology (in person this time, so exciting) and everything continues to look great. I will be happy to have this part of treatment over. Goodness, and I thought I did not have much to write about today.

Yard Joke Sign 

The Plummer House

April 12-19: Dylan's Birthday and the Hair Cut

I am officially more than half way through radiation! Which means I am closer to going home. We are all set to return to Virginia on May 4.... and trust me when I say I am counting down the days, heck the minutes until then. Radiation has been going well- aside from the undeniable hunger I have everyday with some itchy skin and fatigue the side effects have not been to bad. Last week we had my second video follow up call with Radiation Oncology and this time we got to speak with both the resident from last week as well as Dr. Oliver.  It was a pretty informative appointment. He reviewed with us how they lined up my original PET scan (before surgery) with the post op PET scan (from March) and showed us where the beam is targeting as well as how much radiation is getting to the exact location of where the tumor was.  It was really cool. (Eric was supposed to take pictures while Dr. Oliver was explaining it all but he only took one.) The images  allowed us to see that greater than 80-85% of the radiation from the beam is hitting where my thymus once was and the immediate surrounding tissue. The other 15-20% (which in negligible) of the radiation  barely reaches the top of my heart, breast tissue, and lungs. The cancer I had tends to aggressively return to where it initiated so the fact that we are killing the cells in that area with such accuracy is HUGE.  Had we not been approved for proton beam radiation half my lungs, most of my heart and a good portion of breast tissue would all be radiated, not to mention that the precision of targeting the location of the tumor would not be as accurate..... We are very fortunate to be able to have this covered by insurance AND have my parents stay with Dylan and Rylie so we can get the BEST treatment. 

At the risk of sounding corny, I wanted to piggy back on my previous blog "The one with all the C's" (which by the way was a play on how FRIENDS labeled all their episodes).  This past week I found some really great "C"s...…. Care Packages, Cards, Coloring Books, Completed Puzzles, Cutting Hair, Celebrations, and Church.  I can not get over all the love and support that I have received while in Minnesota. It is everyday, no joke, EVERYDAY that a card or a care package arrives. From family and friends to patients and co-workers as well as Friends of friends and friends of my parents so many people have sent prayers and well wishes.....THANK YOU! 

Being here with not much to do I realized that I am kind of living the life of a preschooler! I spend most days working on a puzzle (which I finally completed on Friday) coloring (which really does help pass the time) and napping. Eric even takes me out for recess.  We go for about a 3 mile walk almost everyday which is good for the mind and body. On Sundays we walk down to the church and take some time thanking God for all our blessings and of course asking for help to get through the next week!

 Keeping with the covid lock down phenomena of women cutting their husbands hair- I had to cut Eric's hair last week....which for the record, should certainly be added to the vows! Not going to lie, it took close to 2 hours, and I will not ever be doing it again. It turned out fine with only a few arguments but it was touch and go on who was going to make it out of the bathroom alive.

Sunday was Easter and there was a blizzard. It snowed all day! All day! We did venture out to the church before it got to bad. It just didn't seem like Easter without all the pews filled.. Aside from Eric and I there was only one family of six praying. They were all dressed in their Sunday best and it was nice to hear someone say “Happy Easter”.  We stayed about an hour before we headed straight back to the hotel to make brunch.

Dylan turned 16 on Wednesday!!! I am not even sure I know how to put in words what that day was like. I am chocked up just trying to type this. The outpouring of love that day was so great that it was palpable half way across the country. Technology can be a real curse and yet the greatest blessing. Through text messages, DMs, and the help of some amazing friends we were able to pull off a birthday surprise he will never forget. Friends new and "old" came together for a social distancing birthday drive by shout out full of balloons, signs, gifts, Chick Fil A and the most beautiful cake ever. There was every bit of 20-25 cars of friends that showered him in love!!!! My heart was so incredibly happy as Eric and I watched it all over facetime.

Finally, last week marked the beginning of my hair falling out. People talk about losing their hair during chemo but I feel like they leave out some very important information. Listen, I knew it was going to happen, the oncologist told us there would be "significant alopecia" with one of the chemo meds so we knew it was inevitable. I knew that it would start off by thinning and blah blah blah blah. What I did not know is that It is super ANNOYING!! It started falling out the day after Dylan's Birthday. I would scratch my head and find that strands of hair were coming out. By the end of the day more and more would come out as I ran my hands through my hair. On Saturday it got real frustrating. Imagine if you will you are in the shower washing your hair and handfuls of hair are coming out as you shampoo- and it sticks to your back, your arms, and your chest. Then its all over the shower curtain and wall. What a mess to clean up!  I am not sharing this for pity, I am just keeping it real! Hair falling out is straight up annoying and no one ever talks about that. I used to think as soon as it started falling out that I would just shave it (in good old suck it cancer kind of way) but on Saturday my mind shifted a little.....Forget this, lets have some fun! If its going to thin out before its all gone lets make it less annoying. I have a lot of hair, losing long strains was gross so I decided to have Eric cut off about 6 inches. For the record it took less time then it did when I cut his hair!  Luckily the manager at the hotel had told us he had scissors we could use when we needed them, so we didn't not have to go out and find scissors. He did a pretty good job. And it helps that lopsided haircuts are in style! Lol.... I think next week (ok whos kidding, more like in a few days) I will go shorter and by the weekend I would imagine it being gone. I was hoping that I would be able to hold off until I got home and have the kids be there to help shave it but cancer is a real bitch...…Good thing I can be a bigger one so I win!
Monday starts round 2 of chemo! Wish me luck!

My new Hair Cut

Signs, Balloons and more!

The first  line of cars

The Birthday parade of new friends
Starts with Brooke and Family, wait for it!

The "old school" crew

April 10: Good Friday

This week started out pretty uneventful. The weekend went smoothly with no real problems or side effects from chemo earlier in the week. My joints were pretty achy but Aside from that and what I am told is called "chemo coma" with accompanying nausea and my Benadryl hang over I faired well with side effects from the first round of chemo. Sunday marked 2 weeks of being here and I am officially in the clear from catching Covid-19 on the flight out....Woot Woot. Eric and I went exploring the "city" of Rochester. With everything closed walking was pretty much all there was to do so we walked and walked and walked for hours! It was nice to get some vitamin D and exercise.  The churches are not holding services but are open for prayer a couple hours a day so we were able to get our palms. There were only 4 other people in the church so Eric was ok with me sitting in there to say the rosary (he is a little over protective these days).

I am all set up for resuming chemo at home, of course that didn't come without a little drama. The first oncologist I was scheduled with called to inform me that based on their new "task force guidelines" I need to quarantine for two weeks after returning to Virginia before they would see me for an office visit and administer chemo. This was a huge problem because there is less than a week between my last radiation (and my return home date) and the first day of my 3rd round of chemo. I was astonished that they were actually denying me timely administration of chemo that I have already started. I mean come on, its not like I am coming in for a steroid injection in a joint or even for a consult to initiate treatment. No matter how much we pleaded, the office manager would not budge. She was awful, she even refused to state that they were denying me chemo.....She kept repeating the same line over and over....."we can treat after the two weeks of being home".  We were both so frustrated and felt helpless. This was the largest oncology group near us, and honestly the only one I knew of. I  immediately started calling oncologists in Richmond at VCU and Duke Cancer Center.  VCU was not very nice on the phone and Duke, although willing to help, would be 3 hours away. After shedding a few tears out of frustration, I checked with our insurance and realized there actually was another very small oncology group in Virginia Beach. I called and an angel answered the phone, 👼her name was Chloe! After explaining the situation she said "do not worry about a thing, we will get you home to your family and treat you right on schedule. The last thing you need to stress about is staying on your chemo schedule." Ahhhhhhhh Finally!!!!!!! Bottom line...... I have an oncologist lined up at home, Mayo has talked to them, records have been sent, and I will get chemo on time in May. 

You know, growing up my family called me Killer Kate, a feisty little  force to be reckoned with....I've stepped that up a little these days and now Eric calls me Chemo Kate! Virginia Oncology Associates got a taste of Chemo Kate. 🧏🏻‍♀️

I had a video follow up with radiation oncology yesterday. It was supposed to be with Dr Oliver but it was with a resident instead, which was fine. He was very nice, informative and answered all our questions. On the technical side of everything the radiation treatment plan and beam approach seems to be working perfectly. My second CT verification appointment was later that day and Dr Oliver would be looking at images to make sure no adjustments need to be made.  

Yesterday also marked my first, of what I am sure will be many, mini melt down.🙍🏻‍♀️  What I am about to say is going to make me sound a little crazy, but its my story not yours so oh well. HA!  I had a full on melt down because they removed seating in the "holding room" for radiation. Yup thats right, no chairs, none, gone! There are still chairs in the main waiting room (where there used to be snacks and beverages available while you wait but those are gone now too) but then you go back, put on your gown in a little dressing room, lock up your belongings and sit and wait until your radaition room is ready.  Now you have to sit in your dressing room and wait. It is pretty horrible. As if I dont feel isolated enough being away from home, during a global pandemic, locked in a hotel room, with no place to get away from everything and now I have to sit in a dressing room alone with the door closed and wait for radiation. I can not make this up. As terrible as it sounds (at least to me) the staff was so supportive.When they saw me crying (yes I was crying, in a mask, which made breathing difficult) they immediatly wanted to fix the problem. They did not try and deffend the choice they made to remove the chairs, they actively listened and came up with a solution. They offered the option of sitting back in the main waiting room with Eric from now on instead of sitting in the dressing room. i know it sounds pathetic and  I am borderline embarrassed about my melt down.....luckily the staff was supportive and empathetic- they all wanted to give me a hug (but they cant because of the virus). We will see how tonight goes. 

While I was in radiation, Dr. Oliver called twice to make sure I was doing ok and apologize for having the resident do the video call. I could not believe he called at 6pm just to check on me, the doctors here are just so amazing. 

Today is Good Friday.  Never in a million years would I have imagined that after getting ashes here post op in February For Ash Wednesday that Eric and I would spend half the lentin season in MN. But we have. We have seen -20 degrees and we have seen 60 degrees! Sunday is expected to bring 5-8inches of snow. Maybe we can build a snow bunny for Easter.

Me and my only friends here....the Mayo founders

The new waiting room
For radiation 

                                       

Statue of a doctor inside the Downtown St Johns Church 

See, no chairs 

A Blessing or A Curse?

I am Six weeks post op and this week was going to be my first week back at work. I really miss work!! I miss my co workers and all the Laughs we would have everyday and I miss my patients!  Six weeks seemed pretty overkill  when De Cassivi said That was how long it would take to recover, but he was spot on. It took close to five weeks just to have energy and stamina to complete daily tasks. I am no where close to having half the strength I did before Christmas. (Yikes and now its Easter😳) Now that I am able to move freely and exercise again I am working on regaining strength and flexibility.  Its sure isn't easy........ seems unfair that it takes so much training to be able to run for miles and miles, to touch your toes or  hold yoga poses, yet it takes no time at all to lose it all. Good thing I have all the time in the world right now to work on getting it back.

Last night I couldn't sleep, my mind runs all the time. I started thinking, Things just do not always turn out like we plan, do they! I mean really, It is not everyday someone goes through chemo and radiation 1200 miles from home during a global pandemic is it?!?  What the shit! Who could have imagined this?  Certainly not I.
I wonder if its a blessing or a curse.  The universe seems to be standing still as my world gets a little jolted and jared. When I first got the news about having to return to Mayo for follow-up, consults and initiating treatment  I immediately thought about everything I would miss. Dylans first few High School baseball games, his confirmation, his 16th birthday. I thought about how I would miss getting Rylie ready for her Philadelphia field trip and all the exciting events as 8th grade came to a close. Not to mention just the everyday life of teenagers and the laughs we have together as a family. (Although hectic on a daily basis, it truly is what I live for!) I  had  already been struggling with Dylan and Rylie growing up too fast, with only having Dylan around for two more years. I felt like time was slipping away and every moment needed to be cherished.  So I can't help but wonder, is it a blessing that everything has been shut down, that the baseball season has been cancelled, that the field trip was scrapped? Is it a blessing that the world is standing still almost as if it is waiting for me to get better so life can resume? Maybe! Maybe I am the lucky one in this.

Or is it a curse? A curse that I am missing all these bonus precious days with my kids home from school. And what about from an education stand point. A blessing or curse? The math that Dylan is learning right now is what the SATs are based on, without a strong foundation/understanding what will his scores look like? A curse, for sure! But maybe not- MAYBE this is the the time for him to learn more important life lessons that 16 year old's should learn.

 Listen, I get it, I understand everyones kids are driving them bat shit crazy and that facilitating education on a daily basis  is enough to make many drink at noon..... but what if we look at all this differently. How many of us have said that there is a real problem with todays kids? That they are so disconnected from reality while completely connected electronically? How kids today do not even know how to talk to one another. How we watch them sit next to each other and spend more time looking at their phones than the faces of their friends. I know personally I had wondered how the world as I knew it growing up could evolve into a more greater place for my children when so many teenagers lacked some of the basic principles of humanity. I know that sounds harsh and like I do not love my children and their peers but I think we all know what I am getting at here. Perhaps being forced through social distancing to be without real personal connections will make Dylan and Rylie realize just how precious sitting with friends at lunch is. How important social relationships are. How the world truly is a better place because of the people we surround ourselves with. Hopefully they will remember the time when they couldn't hug their friends and they will never take that for granted. Hopefully they learn a little more about their faith and the strength they can get from prayer.  SO I choose to believe it is all a blessing and not a curse. That this is a giant reset button on the world and I am actually "lucky" enough to deal with all the bull shit of cancer treatments and not miss baseball games and field trips at home. I have to believe that the real blessing in all of this is that I am far away from them now so that I can be even closer to them later and that I will be blessed enough to have all the "bonus" days then.

Chemo Cycle 1 Done & All About Radiation

Thursday marked the completion of my first cycle of chemo.  The oral Etoposide chemo was tolerated much better than  IV and so for the next three cycles I will do IV Cisplatin and oral Etoposide  on day one followed by two more days of Etoposide oral chemo. Next round starts April 20. We have to wait three weeks between cycles to give my immune system and bone marrow time to heal. The fun side effects are expected after day 4 post chemo so that will make for a fun weekend of Eric waiting on me hand and foot! Nah!!! Hoping the weather will be cleared by then so we can get out exercise off some of the side effects.  The list is concerning but the alternative is  worse so mind of matter will be our motto.

Thursday was also the first day of proton radiation therapy. Aside from all the high tech machines in the room you wouldn't even know anything was happening. The room is large, really large, about the size of two regular MRI or CT rooms. There is a Conveyor belt of sorts in the ceiling that moves the machine that delivers the beam. The table rotates around as well as moves across the room to access Xray imaging and  CT imaging  all while I lay perfectly still in the mold that was made earlier last week. The process is long and probably boring to anyone reading this but I need to put it down so I can get it out of my head. So skip the next paragraph if you are not interested.

Radiation starts with getting in the correct position which seems easy but it takes a lot of wiggling to get in the precise position from the stimulation. The table jiggles to move you  ever so slightly so you do not get out of position.Then there are X-rays, I actually have no idea what they are looking for at this point. Then you wait for the beam- and its super anticlimatic because you cant see anything- its invisible! The beam is invisible and perfectly soundless. Not kidding. Makes you wonder if anything is even happening. There are four rooms that can use the beam one after the other so once the machines are all lined up to your tattoos you wait your turn for the beam to be delivered to you.  I have to be radiated from two different angles (hoping to get an iron man emblem at the end of this 🦸🏻‍♀️) so the proton beam machine moves around to the tattoos and I wait for my turn at getting beamed up.  Sounds simple, but there are very intelligent people behind the scenes assuring that it is delivered EXACTLY where it needs to be. Once a week at the conclusion of the treatment that day the table moves over into a CT machine and takes an image of my chest, abdomen and pelvis to assure that there has been No anatomical changes (ie Im not gaining or losing to much weight or any other changes in anatomy have occurred). This is vital to making sure again that the beam is being delivered exactly where it needs to go.

Now I am not so sure I will be able to get any real  good photo shoots in radiation. Tragic I know! Eric is obviously not  allowed anywhere in the back so we may be out of luck- unless I can get a rad tech to humor me and take some pictures.  They did say I can bring my phone back and take some video and pictures of the set up which I plan to do this evening. In a prior post I mentioned that I lack seniority the first week of radiation so my times basically are Past my bedtime.  Tonights appointment (2/24)  is not until 9pm which will make our journey to the radiation oncology location a little tricky. Over half of all main entrances into the clinic facilities are closed to ensure the  very few patients  left here enter through only a few designated Covid 19 screening check point areas. Before 6pm this is not a problem because of how the mayo campus is all connected via skyways and foot subways and there are more screening check points. Oh and by the way it's snowing! In April!

Also, in case you didn't see last two posts comments made using safari web browser are not showing up, i know many have asked about that. If you read the blog using Edge or chrome they should post.

April 1: K8 vs CMO

Yesterday was K8 vs CMO round 1 and The reality is that it was no fabulous chemo debut.....I thought I would walk in get my two chemo infusions and walk out like a bad ass “welcome to the chemo club.... mike drop”!!! However, for lack of better words,  I got bitch slapped. Twice!

Don’t get me wrong I know this is going to very hard, and that it is very serious but I can not dwell on that- so I just focus on being a bad ass. 

The day started out well! I really was on top of my game... had a lovely time with nurses, I was not nervous, we talked about my zebra shirt and the meaning behind it as well as our kids. She advocated from me and messaged my doc to get permission for a second long acting anti nausea med called emend. It was approved and we were off and running. IV premeds, steroids and fluids were being pumped In and everything was great. Then came a big Ol sucker punch. The Emend was being administered when all of a sudden I got a twinge in my back, then heat and pressure in my chest. I looked at the nurse and told her my chest felt weird... she knew immediately I was reacting to the medication and in 10 seconds there was about 7 nurses in the room. The reaction was intense with chest pressure, coughing, throat closing up then flushing of my face and upper and lower extremities- it kind of felt like I would imagine Dr. Bruce Banner feels when he turns into the hulk. They were able to act quickly and stop the reaction fast. I spent the next three hours getting my first chemo drug and did well. When that medication was completed my line was flushed and then they started my second chemo Etoposide (this chemo is the one I get three days in a row- so 12 doses of). That is when the score became K8 0 to CMO 2! Ha! Despite having benadryl, Pepcid and steroids on board i had another pretty significant reaction. 

Turns out I am allergic to the preservative that is found in both of those IV medications called Polysorbit 80.There is a very low percentage of people who have a severe or anaphylactic allergic reaction to that.......#zebra 🙋🏻‍♀️🦓 The nurse and I had a good laugh she said "u know you really are a zebra”! 

The rest of the day was kind of a blur considering all the benadryl i was on. Needless to say we did not finish the Etoposide infusion. After a coming together of the minds at mayo we decided to proceed with an oral version of this chemo. There was one other infusion option that could be considered but there is more risk for organ toxicity and it does not pair well with radiation. So we will proceed with oral Etoposide today and tomorrow. Today I will take my dose of six pills in the chemo clinic so I can be observed for two hours. Hopefully the nurses do not run and take cover when i arrive. Here is hoping all goes well today! 

Now for radiation update. Talked to Dr. Oliver, my rad onc yesterday (who called me from his cell because he is out of the office this week for what was supposed to be spring break, instead he gets to work on my radiation plan.) They have completed my radiation plan but he felt it was only a 95% he was making adjustments to one of the machines to make it 100% so we start radiation tomorrow.

How covid 19 impacts this: after all was said and done yesterday my nurses who practically saved my life twice yesterday could only give me air hugs. You just dont know the power of touch until you cant do it. It was kind of like after my follow up with Dr. Cassivi when we were saying our goodbyes and  we couldn't even shake hands- it felt so incomplete. The halls here are getting more and more empty everyday. Today all the chemo nurses are wearing masks.

PS. Chemo for dummies was very interesting I esp liked learning about how poisonous my urine will be! I mean seriously these are real things no one else talks about when talking about chemo. I have to close the toilet lid when i flush because they dont want it to aerosol 🤨mind blowing info. If anything gets soiled we have to where gloves to clean it up and take special washing precautions. And now we all learned something new-ish.

* comments posted using Safari do not come through! I know many have reached out saying they commented but wasn't seeing it! If you use chrome or Edge it will post. And since I am so bored and have nothing to do I fully expect everyone to reread every post and comment again JK! 

Day 1 before the TKO

Day 2 Handling  Etoposide oral like a Boss