On March 3, 2015, I was able to fly up from Hawaii to the Mayo Clinic in Minnesota. The journey up there was a long one — my first connection was in Dallas, and then onward to Chicago (where I met my mom who flew from Jersey) and then onward to Rochester. The journey was made longer, however, by a crazy blizzard that hit Chicago that night and grounded all of the outbound flights. My mom and I walked around the airport, grabbed a bite, and nervously awaited the news to find out whether we’d make it out on time for me to get to my appointments at Mayo the very next morning at 7:30 AM.
Around 8 PM, we were sitting at the gate, talking about this complicated turn of events, when a woman sitting nearby chimed in and said that she was headed to Mayo as well. She was going for an experimental treatment for a rare condition and was used to the long journey that she took from her home in Massachusetts to Minnesota every four weeks. She was set on the next flight to Rochester that was leaving shortly, and we anxiously awaited on standby to see if there was room for us to go. I was still in pretty bad shape, having only gotten out of the hospital a week or so before. There was a chance that there’d only be one open seat, so we knew that between my mom and me, I’d get the seat since I had to be the one present for the appointments — but I wasn’t sure I’d be even able to manage my bags by myself. Our new friend, Karen, took me under her wing — she helped me onto to flight, off the flight in Rochester, helped me at baggage claim, shared a cab with me, and then it turned out we were at the same hotel — and she showed me around the underground tunnels that connect the hospital to pretty much everything. I was grateful to not have to endure Rochester in March other than to go from the airport to the hotel — everything we had to do and everywhere we had to go was connected by underground tunnels. Karen took me out to dinner and then got me settled into my room, left, and I fell asleep for about a half hour before I shot up in bed with that all-too-familiar Prednisone anxiety attack.
I called Sean and he talked me through my panic by talking about anything else. That kind of panic attack is something I’ve only experienced when on high doses of Prednisone. It felt like every nerve in my body twinged; my chest would tighten, my heart would race. There was no rhyme or reason to it and usually it would only happen in the middle of the night, and the more I tried to rationalize what was happening and logically talk myself out of it, the worse it would get.
My mom had still not arrived and I had no idea where she was — I knew that she had caught a flight from Chicago to Minneapolis, but that was up to a two hour drive, but that was all I knew. I stayed awake until she arrived sometime around 2 AM. It turns out that when she landed in Minneapolis, she was on the phone with my grandmother, telling her how she was going to find a taxi to take her the rest of the way, when a family traveling from Jordan to Mayo for their father’s cancer treatment overheard the conversation. She was the only one in her family that spoke English and leaned into her parents to say something, and they all nodded with approval. She then shared with my mom that they already had a car waiting and were on their way to Mayo as well. So began the trek into the night with kind strangers that bore the beams of love to someone they didn’t have to.
The next morning, we sat down with the two different doctors in the IBD clinic, who took more than an hour with us as they examined me and then created a timeline of everything from diagnosis onward. I couldn’t believe how thorough they were. It was determined that I needed to get a colonoscopy the next day. They discussed the possibility of doing a colon resection and said that we would make that decision after we saw what was going on in there.
I was grateful to be there but also exhausted, and on top of it, it was very new to me to now be sharing my disease so widely on social media. While at the hospital in Hawaii, we realized that we weren’t going to make it with the thousands of dollars of medical bills that were already stacking up and the more that awaited, and that I’d be unable to go back to work. I was able to eventually get Leave-Share from work, where teachers donated sick days to me, which was incredibly helpful — but we were already struggling, let alone now add in all of these expenses. Due to the circumstances, my sister created a GiveForward page for us, and I was suddenly thrust into a very public setting of sharing my disease with every person I knew under the sun and their mother. Up until that point, I had been very private about my health. It was overwhelming. I was not only fighting my body, but was also dealing with a lot of voices coming in, all with the best of intentions, but nonetheless, it overwhelmed me.
As we got into the elevator after that first appointment, I checked my Facebook, and found that someone commented on one of my Mayo post updates and said, “Oh thank god, praise Jesus!” to which my husband responded, “no, thank the Mayo Clinic, and praise the doctors that are going to make her okay.”
I agreed with my husband — I was tired of the thoughts and prayers, though I knew they were well-intentioned. I knew that they came from a place of love, and from people not knowing what else to say, but the idea that “God” was responsible for any of this or for any of my treatment infuriated me. Years before, I was visiting with my very sweet and very loving, but very Irish Catholic grandmother, who said to me that God gave me Crohn’s because he loves me. Growing up in a large Irish Catholic family, I never felt that I fit into that particular mold, and the idea that “God” would do this because he loves me made me feel even more alienated — and I didn’t feel that “he” now got to take credit for any of my care or treatment.
After my colonoscopy the next day, it was determined that my entire colon was inflamed, so a resection was out of the question — and the doctors weren’t sold on a colectomy.
Entyvio had just been approved for Crohn’s-use, so it was decided that we would go that route. Further, they were upset that I hadn’t yet been treated for my Osteoporosis, so I would also get a Reclast infusion. My mom and I, used to insurance companies, asked if this was going to take a while to get approval and if we should extend our stay, to which the doctors responded, “Oh, no, she’s going to get both infusions within the next couple days. We don’t care about the approvals, they’ll come through, and if they don’t, they don’t.”
Quite a change from what I was used to hearing, where my infusion center in Hawaii eventually said to me weeks later, when they screwed up the pre-authorization process, “Well, I guess you aren’t getting the infusion, and we won’t accept the promise of cash-payment because we know you won’t be able to actually pay it.” (More on those shenanigans in the next chapter.)
After my Reclast infusion the next day, we went back to the hotel room, and within hours, my right arm was swollen, red, puffy, and sore. The next day, it felt worse. We weren’t sure what was happening so we called the IBD clinic, who directed us to the ER.
Soon, I began to have a feeling it could be a blood clot, especially because it was right where my PICC line had been, and during the last few days in the hospital, the line wasn’t letting the nurses draw out any blood, but was letting medication push through.
Now at Mayo, I was wheeled up to an ultrasound room where a young woman began the ultrasound. She was beautiful, with long, red hair, green eyes, and had a very serious air about her, but had clearly developed a gift for gab from having to deal with people probably more than she liked to. She made small talk with me, inquired about my journey to get there, and I watched the screen as she pressed down on my veins. I knew what to look for; I waited for a vein that wouldn’t quite collapse and had kind of a small black pebble blocking the way. I found two, and each time, I’d say, “Oh, there’s one — DVT or superficial?” and she’d smile and say, “I can’t confirm that, dear,” but her expression was enough for me. Back down in the ER an hour later, the doctor confirmed that I had one DVT and one superficial, and that I would be admitted for the night for observation to make sure that nothing dislodged and ended up in my lungs.
The private room was spacious, clean, and peaceful, and I was thrilled to not have any coughing roommates watching Cops all night.
We began the whole blood clot process of Warfarin and Lovenox, the latter I always dreaded. I’ve had to get them many times over the years during hospital stays and other blood clots, and once had a male nurse that injected it right into muscle instead of fat, and that was most unpleasant.
Anyway, the rest of the stay went well at Mayo. My mom and I enjoyed having the one on one time together that we hadn’t had in years. One night we went to dinner at a restaurant somewhere along the underground tunnels, and another night, we ordered room service and watched a movie. As I gathered our plates and cleaned up after our room-service treat, I noticed my mom watching me, and she kind of had this look of acknowledgment and surprise, and when I asked if she was okay, she said, “yea, I’m good — I just kind of saw you as a woman for the first time, and it was really nice.”