It's been an eventful few weeks, to say the least! Here we go:
A couple of weeks ago, Layne and I were at the mall shopping for an interview outfit for me (more on that later). A few times throughout our time there, I had to stop to catch my breath and was getting light headed from walking and would find a spot to sit down every so often. After about the third time this happened, and Layne said I looked like I was about to pass out (which I was), she pulled a pulse-ox out of her purse (because of course she had it in her bag. While she was on maternity leave. #supernurse). For those of you who don't know, a pulse-ox is that thing the doctor puts on your finger to get your heart rate and oxygen levels. ANYWAYS, my heart rate from walking was 155. This, as I learned, is absurdly high, especially from simply walking. She checked it again after we got in the car and I had sat for a few minutes and it was now in the 120s, again, absurdly high. She instantly asked if I wanted to go to the hospital. I laughed and said she was being paranoid, and I was just out of shape. Being the protective big sister/nurse that she is, she made me call the on-call triage nurse at my oncologist's office and tell them about it and I left a message.
About 30 minutes later, while I was driving to Barnes and Noble (the best store), I got a call back from the nurse who said I could either come in to the office the next day to get checked out OR I could go to the ER. I asked what she would recommend and she said based on my symptoms (elevated heart rate, tightness in my chest, my hemoglobin levels--even though she was going off my labs from 3 weeks prior at my last chemo), it was highly likely I was having a pulmonary embolism, which is a blood clot in the lungs. I said okay, and called Layne to let her know I was now driving myself to her ER, and she said she would call ahead and let them know I was coming (#perks).
After I was admitted to the ER, I got an EKG, which looks at your heart rhythms, and had blood drawn for labs. I felt like a super star, because mostly everyone who works in the ER knew who I was and I felt special that they were all coming in to check on me! My oncologist happened to be at the hospital and heard I was in, so he came to see me too!
The EKG showed that I didn't have any abnormal arrhythmias, meaning my heart was pumping normally, just at an extremely fast pace. The doctor came in and examined me and wanted to send me for a CT scan to get pictures of my lungs to check for a blood clot. After a couple hours of waiting, I had the CT, and about an hour later, we had the results. My labs were all normal, and the CT scan didn't show any blood clot. So, the doctor told me I could stay overnight to be observed, or I could go home and have Layne and Aaron watch me. Obviously, I chose to go home!
The next day (Thursday), I noticed my left arm was looking swollen and puffy. I asked Layne for her opinion, and she agreed it did. We decided to keep an eye on it. On Friday, my arm was still puffy, but I wasn't in any pain, so I decided to forge ahead and go to Dallas for my friend Megan's wedding. By Friday night, my legs and feet were now also puffy. I had edema, which is the accumulation of fluid in your extremeties (hands, arms/feet, legs). Here's a beautiful picture:
I brought Layne's pulse-ox with me to track my heart rate, and even walking up one flight of stairs would put my heart rate in to the 190s. It was a good time, obviously. The new theory, since pulmonary embolism had been ruled out, was that I was suffering from congestive heart failure, which can happen with chemo. I know that term sounds scary, and believe me I had my own "oh my god am I going to need a heart transplant" moment, but all it really means is that my heart wasn't working as well as it should. I promised Layne and Aaron I wouldn't over do it, and that we would get it checked out on Monday when I went in for my surgery.
On Saturday, the bride-to-be and a group of us girls went on a wine tour and it was SO much fun. They all knew what was going on with me and my heart issues, so they were being great about checking on me, but also knowing this was my first time I was able to drink since starting treatment and agreed that I had earned the right to have some fun!
Let's just say one of the few cancer perks is having a prescription of anti-nausea meds for when you inevitably become hungover.
The wedding on Sunday was BEAUTIFUL and I was so happy to be able to be there for it! Megan and Matt, I love you guys so much :)
I went to the airport straight from the wedding, because YIKES, I'm getting surgery in the morning! I was lucky enough to have my cousin Roxy fly down from Colorado to help out for a few days, since Aaron had to go back to work from paternity leave on the day on my surgery.
On the morning of the surgery (Monday), I was oddly at ease, after weeks of anxiety building up to the operation. I wasn't supposed to go in to the OR until 1:30, but of course things were running late, so by the time 2:30 rolls around, and I haven't eaten since the night before, let me tell you I was HANGRY. While the surgeon was marking me up, Layne was telling the resident surgeon about my little ER trip a few days prior. He said he would let her know, but this was the first part of the miscommunication that led to the nightmare that was my life last week.
The surgery overall was a success. Even though I feel that I look like Frankenstein's monster when I look at my scars, I know that my surgeon did a great job. While the surgery was meant to be outpatient, they decided to keep me that first night because it was taking so long for me to wake up from the anesthesia, my oxygen saturation level was low and I was unable to go pee (both of these can be normal after anesthesia). So Layne and Roxy left for the night around 9:30 PM and I was eventually carted up to (what felt like) the penthouse suite! I had a large, private room and it was awesome. What is not awesome, however, is trying to sleep in a hospital. For the first 3 hours once I got up there, the nurse had to check my vitals every 15 minutes (not exaggerating). After those 3 hours, it moved to vitals check every 30 minutes, and then eventually every hour. Around 4 AM I started to have pretty severe pain in my left side, which I shouldn't have been able to feel since they gave me a nerve block and I was pretty doped up on Fentanyl. The on-call doctor came to check it out and tracked how it was looking/feeling. It was becoming super swollen and she said it is possible there is a vessel leaking (blood) and they may have to go in surgically to get it all out. Once my regular surgeon came in in the morning and evaluated me she agreed I needed surgery and they took me back what seemed like straight away! As
Layne mentioned on Facebook, I had a hematoma (collection of blood) that was 300cc/about the size of a Coke can. My surgeon had mentioned that this complication usually happens to one patient of hers per year, and as my luck would have it, I was that patient. While recovering from my 2nd surgery, my heart rate jumped and stayed in the 140s so they did an EKG, just like when I was in the ER the week prior. They also took labs to check my chemistry levels since I was extremely lethargic and white as a ghost. I had been anemic from the chemo, but losing all that blood from the surgery had sorta tipped me over the edge and dropped my hemoglobin down to 7.5 (extremely low) and I then got my first blood transfusion, which may or may not have turned me in to a vampire--still waiting on those results ;)
During these days in the hospital, I saw SO many different people: surgeons, hematologists, cardiologists, nurses, social worker...even a Priest came in to see me to see if I needed anything! It was overwhelming to have this many people trying to help me get healthy, especially when the lack of communication between them all grew and grew, which I thought was about to give my poor sister a heart attack via frustration.
By Wednesday, an echocardiogram was ordered to check out my heart, because my HR was still so high, the swelling in my arms and legs still had not gone down, and I was short of breath doing absolutely nothing. I was feeling better, and while the cardiologists found nothing suspicious on my echo and cleared me to go home, my surgeon wanted to keep me another night to meet with an oncology cardiologist the following day (womb womp). Thursday morning I got ANOTHER echo, this time with strain, to test if my heart was functioning improperly. Surprise! It wasn't. They determined my heart simply was reacting to the cardiotoxicity from the chemo and there was no underlying defect. Unfortunately, they took more labs and my hemoglobin had dropped down very low again, so I got ANOTHER blood transfusion. All in all, they finally released me around 5:30 on Thursday with a crap load of prescriptions--pain killers and beta blockers--with a follow up with my surgeon in a week.
Recovering at home was SO much better than in the hospital. It was hard (and still is!) that I am unable to pick up and hold my favorite dude baby James, but it was nice to be back in my own bed. Because of the drains I had on both sides, I essentially had to sleep sitting up, which I had kind of gotten used to but still sucked. Between Thursday and Sunday I slept most of the time (or at least tried to) and was extremely grateful for painkillers.
On Wednesday (5/10), I first had an appointment with my radiologist, Dr. Olejyar, and he determined I would be ready to start radiation in 3 weeks time. Woo! The next appointment was set up and I was feeling great. From there, Layne and I went to Mayo for the follow up appointment to see my surgeon so she could assess my incisions and *hopefully* get my drains out. She said that I am healing nicely and my drains were ready to come out and I honestly could have cried because I was so happy. If you've ever had drains after surgery, I know you understand haha. While it hurt SO bad to get them taken (or should I say ripped) out of you within an inch of your life, I was relieved when they were finally gone.
Now. During the initial surgery the week prior, they had found some residual cancer in my breast and in one of my lymph nodes. Because of this, and because of my predisposition to cancer because of my gene mutation blah blah blah, my surgeon stated that I will need more chemo. She said it would be better to "over treat" me than under treat me and allow this cancer to spread anywhere else or come back more aggressive. Obviously, having just finished 5 months of chemo 3 weeks ago, this was not news I was excited about. I told her I would talk to my oncologist and go from there.
Today is Friday, and I've just come home from seeing my oncologist. He agreed that because there was still cancer in my system, I will need more chemo, and thus I will begin a regimen of Carboplaten (a new chemo for me) in just over a week. I'll have 3 rounds total, and each will be 3 weeks apart, thus totaling 9 more weeks worth of chemo. Because it is too hard on the body to do chemo and radiation simultaneously, my radiation has now been pushed back until after my new chemo ends. While I am discouraged at having to do more chemo, I know that it is for the best.
ON THE PLUS SIDE, I AM HAPPY TO ANNOUNCE I'VE ACCEPTED A JOB TEACHING ENGLISH AT WILLIAMS FIELD HIGH SCHOOL! Since our school calendars are year round, I'll begin working in July! Those of you who know me well know that I've always wanted to be at the high school level and I am so excited to be able to begin getting my life back to normal.
As always, thank you all for the love and support! I can't tell you how many texts and messages and I've received since the day of my surgery letting me know people are thinking of me and it honestly does give me that drive and motivation to keep going when things get rough. I am so lucky to have such a wonderful support system.
Love,
Kristen
