I have had so many friends reach out and ask how things are going/how things went in December. I wanted to write a basic update about how things went at the first appointment, or at least continue the conversation since I last wrote.
The MRI was honestly the worst part of the first round of appointments. I was already nervous, not for the MRI itself, but just the whole experience. So, when I was called back to the lab area outside of the suite, I was a bit confused. I wasn't told ahead of time that contrast would be used...and while I have had contrast multiple times, it just caught me off guard. I am typically a "hard stick" when it comes to IVs, and I wasn't thrilled with the nurse who was trying to deal with my veins. Don't get me wrong. She was wonderfully kind but struggled with the IV nonetheless. The final product was a rather uncomfortable hand IV, but hey, anything has to be better than major surgery, right?
The next thing that caught me off guard was the fact that I would have to enter the machine head first. Also, Mayo doesn't use the open MRI because they feel it is not as accurate. I was prepared for the tiny tube, but not the fact that my head was entering first. When I walked in, one of the nurses just stood there...waiting for me as I stared at her, wondering why the pillow was in the wrong place. Reality set in, and I lay down where she pointed. As they quickly bustled around, clipping things to me and putting the cage type deal around my abdomen, I slipped into a panic attack. So ridiculous. I didn't start crying until the second nurse came over and asked the first nurse, "ummm what's the matter with her?" [so many facepalm emojis here] I was then embarrassed, but eventually calmed down.
The MRI was fine, and the nurse was very soothing to listen to, as opposed to the recorded voices telling you to "breathe in, breathe out, breathe in, NOW HOLD IT AND DON'T MOVE A MUSCLE." They played lovely Christmas music for me, and all was well. When I exited the tube, however, I got a little faint feeling and had to sit there and regroup. But, it was finally over.
My friends picked me up from the hospital, and we enjoyed an afternoon of Christmas shopping at IKEA, and then a late lunch at one of my favorite eateries, Newk's.
On Wednesday, December 5, Heath and I returned to Mayo to meet the other doctors and to begin the actual clinical trial. There was a lot of paperwork to complete, including consent forms and a series of questions about all the things...physical symptoms, emotional awareness, psychological questions, etc. The orthopedic surgeon informed us that the radiologist had been correct. There are actually three tumors in a bit of a line along my ribs. They can't completely tell if they are necessarily connected, but they can see that the largest of the three appears to be metabolically inactive. Because of this observation, they have decided to inject the steroids into the smallest, most active tumor. I was still feeling a bit nervous, even after the other research nurse so gently said to me, "Why are you nervous? What is there to be nervous of? Haven't you ever had a steroid injection? You'll be fine..." (insert eye rolling emoji here). Despite her encouragement, based on the MRI experience the day before, we all agreed that I would take a Valium to help ease the nerves. :)
The actual injection took place a few hours later. The radiologist who is helping with this part of the trial was incredible. She was very down to earth and had a teaching demeanor. She was very knowledgeable about the trial and the research behind it. It was nice hearing her "teach" this to the radiology tech who was helping with the ultrasound. It just clarified some questions I didn't even realize I had. She was so funny, in a super nerdy way. She was so excited that within my body, we have a natural, built-in control...two actually. She was just thrilled about this added bonus ;) I am so glad I can provide three tumors for them to study!
The injection itself was fairly straightforward. The radiologist first injected lidocaine to numb the whole area. Then, with the use of the ultrasound, they slowly injected the allotted amount of Kenalog into the chosen tumor. It was slightly painful, but more of a burning sensation than anything else. We waited for a few minutes after it was done, and then I went on my way!
For the first few days after the injection, I had a pretty dull but constant pain at the site. It hurt to twist or turn my body too quickly and basically felt like a deep bruise along my ribs. BUT, on the third day after the steroids, MY BODY WAS SHOCKINGLY PAIN-FREE. No more nerve pain, no more tumor pain, no more back pain...it was kind of glorious. This pain-free sensation lasted for about three weeks, maybe four. Then, the pain gradually returned. I can now feel my tumors constantly...when I breathe, when I cough, when I stand up or lie down, when I twist my core...it's kind of a pain, no pun intended :) It's so crazy. I didn't realize how much pain I had been in until it was gone. I am anxious to discuss this whole experience with the doctors.
Which leads me to my final point...tomorrow marks six weeks post-injection. We are driving up to
Jacksonville in the morning to meet with the doctors again, and then onto the second injection in the afternoon. I believe the oncologist will be in the meeting tomorrow, and I think we might be scheduling an appointment for me to meet with a genetic counselor. Have I mentioned that a small percentage of these tumors are hereditary? Most likely, mine isn't, but we want to rule it out. Just another layer to this complicated saga. :) We will cross that bridge when we get there.
Unfortunately, we won't know if this trial is working for quite some time. I am trying not to react to the constant pain and assume that the tumors are growing. The best part of this trial is that this is my path now. No need to really think about the other treatment options at this moment because I have committed to the trial for two years. Of course, if we see that it is definitely not working, we will jump ship and start something else anew. Who knows...maybe by the time this trial is over, there might be a cure, or at least more knowledge about these tumors!
I am trying desperately to maintain a positive attitude. There are hard days...especially when my body just hurts, but for no external reasons that others might see or understand. I'm grateful for my tribe of people...my husband, our families, our amazing friends, near and far, the phone calls, the texts, the snail mail...I feel so covered in prayers and encouragement. I keep reminding myself that this is just a season...that this, too, shall pass...we have weathered some crazy storms during our life together, and we will continue to weather this one, too. And hopefully, we will emerge at the end to a beautiful rainbow, one full of peace and maybe the understanding of why we have been in this storm in the first place.
Thanks for traveling alongside us.
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