Since my last post at the end of August, I have made it past the half-way point of the total number of Imfinzi infusions I am scheduled to receive. Some days are better than others, but that is life, no matter what your circumstances. One of my favorite sayings is, “it’s not about what happens to you, it is about how you react to what happens to you”.
The next leg of this journey…
Thursday, September 6, 2018 – Imfinzi #11. I met with Dr. H prior to my infusion. I told him I was still experiencing the uncomfortable swelling in my body, mostly in my hands and feet, and that sometimes the pain from it woke me up in the middle of the night. Continuing to take Aleve every morning helps, but the pain never really goes away (kind of like the headaches I have daily). The tinnitus (ringing in my ears) seems to have gotten worse as well. He suggested that I continue with the Aleve and rest with my feet up as much as possible. He also scheduled me for a CT Scan on November 1 and said that I would not meet with him again until then. I had my infusion and headed home as usual for lunch and rest. The next two days I had the usual body aches and exhaustion that I was almost getting used to. After that, my energy came back a little at a time, but I was still having the sensation off and on that I couldn’t catch my breath or take a deep breath, which meant that my old friend, anxiety, came to hang out more often.
Thursday, September 20, 2018 – Imfinzi #12. I went straight into the infusion room and every chair but one was taken. I had never seen it that crowded and it made me sad. For the hour and a half I was there, all I could think about was everyone who is suffering from this horrible disease and hoping that their outcome is as good as mine has been, so far. Even though I had been feeling crappy a lot of the time, I left that day feeling thankful for my wonderful Doctor and his staff. I was more exhausted than normal, but so fidgety I couldn’t relax. No rest for the wicked!
Thursday, October 4, 2018 – Imfinzi #13 – The Halfway Point! Straight to the infusion room again and it was just as crowded as the last time. I chatted with one of the nurses about how I had been feeling some weird stabbing pains in my port and she said that it was most likely from scar tissue that has built up around it. She was able to access it like normal, so she wasn’t concerned about any blockage and told me to let them know if it got any worse. I also told her that my recovery time after the last infusion had taken a few days longer than usual with lots of anxiety, and that I was having more frequent bouts of exhaustion. She said to keep a record of any changes after this infusion and to call them if the pain in my port worsened.
Friday, October 5, 2018 – Jake and Makayla came in to celebrate Jake’s 25th birthday and on Saturday morning, they announced that Brian and I would be grandparents! To top it off, they are due on our 30th wedding anniversary, May 27, 2019. We are so excited! We had a great visit and lots of fun sharing the news with family and friends. Am I really old enough to be a grandma??? Holy cow, time just keeps flying by so fast!
Thursday, October 18, 2018 – Imfinzi #14. I actually had to wait for a seat to open up in the infusion room and I found out why they have been so crowded. The hospital I go to was bought out by another one and so, a lot of people who used to have to drive much further for their treatments are now able to come to this one. I am happy for those who now don’t have to drive so far and I can wait a few more minutes for them to finish with their treatments before I have mine. I let the nurse know that I was starting to experience some pain when I try to take deep breaths and it seems like I am getting winded and tired easier. She said that I should use my inhaler up to four times a day to see if that helped. I was scheduled for a CT Scan in a couple of weeks and would be meeting with the Dr. H afterward. Unless the symptoms worsened, I would wait to discuss my concerns with him at that time. Another strange thing is that the tips of my fingers were starting to crack and peel and it was pretty painful to pick thinks up, touch things and even wash my hands. The nurse recommended that I try Aveeno lotion or something similar to keep them moisturized.
Thursday, November 1, 2018 – CT Scan and Imfinzi #15. Holy cow, did I have scanxiety before this test! For the entire week prior, I had a hard time falling asleep or staying asleep. I had nightmares almost every night. When I was awake, all I could do was fidget. I was crabby and totally lost my positive outlook. On the morning of the scan, I woke up super early and tried to meditate (impossible to do with your eyes opening every few seconds to check the time) and not fidget. Brian took the day off to go with me, and I was so glad he did. After the scan, we stopped for breakfast and then made our way to see Dr. H. He showed us the images from the scan on his computer and said that there was no signs of cancer (woohoo!). There was a very definite image of the growing scar tissue from the radiation, noticeably more than there was on the x-ray I had had in July. Brian asked if there were any red flags and Dr. H said there was no cause for alarm as I wasn’t having any issues with coughing, but that the scar tissue was most likely the reason for the tightness and pain I had been experiencing in my chest. He also said the scar tissue may even get worse and that it may or may not eventually dissipate. Brian asked him about the swelling I continue to experience in my hands and feet and Dr. H decided to prescribe 10mg per day of Prednisone (a corticosteroid that prevents the release of substances in the body that cause inflammation, but it can also suppresses the immune system) to see if that helps. I let him know that about a week prior I had begun to occasionally see a blue light in my peripheral vision in my right eye. He said that it could be from the headaches that I have on an almost daily basis and that the Prednisone may help that as well. If not, he suggested I see my eye doctor. After speaking with Dr. H and getting the results, I felt like a huge weight had been lifted from my shoulders. Brian and I headed for the infusion room, which, of course, was almost full. We settled in and both fell asleep from the exhaustion of worry as the clear liquid dripped through the IV and into my port.
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I now have only 11 more infusions over the next 22 weeks and I’ll be done (at least that is the plan). I am hopeful that the steroid will help with the swelling and blue light (K-Mart blue-light special, as my sister called me when I told her – funny girl, she is).
At this point, other than another x-ray around early February, the next scan I will have will be after I finish with all of the Imfinzi infusions. This one will be a PET Scan in May, just to make sure the cancer has not metastasized.
As the holiday season marches in, I have much to be thankful for. It is so much different than last year, when I was very scared I may not be here to see another one. In all reality, spending quality time with loved ones, in person or over the phone, should be something we strive to do all year long, not just when the calendar dictates it.
I look forward to a wonderful 2019, where I anticipate being cancer free, celebrating 30 years of marriage with my amazing husband and holding my new grandbaby!
“It is not happy people who are thankful…it is thankful people who are happy.”
“Give thanks for all of the opportunities that even our struggles bring.”
You and all the individuals you are having this experience with are so very strong. Of no surprise to your family or friends is your unending selflessness throughout this journey (I’m sure journey sounds like a stupid word for what you are going through but you are in fact going to arrive at a different place then where you Began). Thank you so much for sharing with everyone! So proud to call you my friend!!!