I left off after my last hospital visit which was at the end of May. I received several iron infusions which greatly helped my energy levels after being severely anemic for so long. My follow-up appointment with my doctor went well and we talked about the next plan of action. I would have a new round of chemo the next Tuesday morning for the mass in my lung.
My doctor decided that it would be best for me to get another iron transfusion in the clinic because I was so low, almost nonexistent on my iron levels two weeks before. So, I went down the hall with the nurse and was set up in a little chair in the middle of the triage area and got an IV. And as I have said before, IVs and I just don’t get along, so that took several minutes to get that figured out. Then we started the iron infusion.
This shouldn’t have been too dramatic except nothing with me happens routinely. Within the first thirty seconds of the infusion I started sneezing. I didn’t really think anything of it because when I start sneezing I can sneeze for awhile. But, I kept sneezing, and sneezing, and sneezing. . . My nurse checked on me to see if I was okay. I said I was fine so she didn’t think anything of it. This went on for about ten minutes. Then my nose started to itch. Then the inside of my mouth started itching. And then the right side of my bottom lip started to swell up. Then, my throat started to close up. My nurse came out and was like umm….. Are you okay?!? I shook my head, “no”. She sent someone to get a doctor to order Benadryl.
We got Benadryl. . . Meanwhile as we were waiting for this to work, my Vasculitis specialist came around the corner and just started laughing at me. If you knew my doctor, you would know that he finds me quite interesting because apparently I don’t really follow any normal protocol for anything we are doing with Vasculitis. He smiled and then asked me to start singing. First of all, I was getting pretty loopy from all the Benadryl they gave me. Secondly, all the songs that I knew suddenly left my head. Fortunately, my nurse started singing Jesus Loves Me so I joined in. My doctor just wanted to make sure I could breathe normally. He decided to put me on a small Prednisone taper. During one of my appointments we had talked about how I don’t like Prednisone and what it does to me. Because of that, we had decided not to have that as my main tench drug but instead a drug called CellCept. My doctor thought it was great that I would have to take some Prednisone in light of that previous discussion. I was allowed to go home and thankfully everything was fine.
That was in the middle of June. I was now on a maintenance drug for the next two months before the last chemo kicks in. I took two doses a day two pills each time. I actually finished this three weeks ago. Thankfully, during that time I had no major problems! I had two follow up appointments with my doctor just to check in to see if everything was going alright. And it was.
Between coming off of my medicine and now has been a little bit of a struggle. I have been getting pretty bad headaches almost everyday which is frustrating. I also am having a hard time eating. I have been trying a different, very limited diet, however, everything I eat makes me sick. Fast forward to three weeks ago, I went to see a different doctor because my primary specialist was on rotation in the hospital. It was just a checkup. So, it was pretty uneventful. The last two appointments I have been able to drive myself! My doctor was so shocked, but it was great!
My last appointment went well. However, because of the stomach pain I have been having, the doctors got worried because of the previous colon issues I had. The location of my pain is where my gallbladder is, so the doctor doesn’t think that it is vasculitis right now… but it might be. She referred me to a GI doctor since I haven’t seen one since last November. We already know that my gallbladder empties very slowly.
I went to see the GI doctor and pretty much had the same kind of appointment as always–just with a new doctor. “We don’t know what’s wrong with you. We are 90% sure we know what is causing this. But we still think we need to do scopes again. Just to be sure. . . We are going to run some labs to see if your diabetic, if you have chronic pancreatitis. . . ”
Something I have learned from going to so many doctors appointments is to be your own advocate. The doctors only know as much as you share with them along with the labs, scans, and other tests. I’m finding out that it is important as you go to each appointment to make the decisions for yourself–not for them. At the end of the day, it is your choice to make the best decision for you. We ran a bunch of different labs that day. Other than the previous symptoms that are returning, I have been feeling okay…until a week ago. . . and I may or may not have made another trip to the hospital. But as always, more on that next time.