It has been an eventful few weeks since my last round of chemo and blog post. This process is quite the journey. Just when I think I know my path and all the decisions have been made, there always seems to be a new bump in the road.
My last round of chemo was fairly uneventful. I did not have to have the Neulasta patch, which was pretty amazing, and took away the bone pain and aches that made the other rounds so difficult. Strangely, I had quite a bit more nausea than previous rounds. Good news is now, at three weeks out, many symptoms are fading. I had coffee for the first time since mid-April and it tasted good! I still feel like my sense of taste is dull, but things I love no longer taste terrible. I will say the cumulative effects of chemo have been harder than expected. My energy level is still way down. The chemo brain/chemo fog/brain fog (whatever you want to call it) has been rough and hasn’t faded at all yet. I hope it starts to resolve soon. I had such great notes for the first few months after my diagnosis from doctors appointments and phone calls. After the surgeries started, I couldn’t easily write, so that decreased dramatically. I am constantly finding myself trying to recall and remember things, and having a hard time.
As mentioned in the previous post, I am still struggling with my right arm. I had a pretty rough day a few weeks ago. When I did meet with my original breast surgeon, she immediately diagnosed me with lymphedema. I thought it was mainly a follow-up but the whole appointment was centered on my arm and how to manage things. This news hit me hard. On one hand, I had been having trouble with my arm for weeks and was not surprised, but since lymphedema is a condition you manage and not something that can be “cured” the news and her certainty was still jarring. To complicate things further, she explained she felt I needed to go back to the drawing board, talk to my radiation oncologist, and seriously consider not doing radiation now that I have a lymphedema diagnosis.
Statistically, everything I have had to do to treat the cancer has increased my chances of lymphedema. From the beginning, all my doctors spoke so much about it and the likelihood of complications. From the beginning, we decided to be aggressive with treatment and I felt I understood the risks. I also seemed to be on a good side statistically and really hoped lymphedema was not in the cards for me. I even had that cutting edge procedure done to help lessen my chances of having problems. Many have asked if this means that procedure didn’t work? To be honest, we don’t know. Maybe I would have had much more severe issues already without it. At this point, I just have to figure out how to move forward. There is still a chance that as the chemo drugs leave my body, my arm will improve some. More physical therapy and lymphatic drainage massage can help as well. It is all manageable but a huge bummer. I don’t feel like I have all the answers I need, and my arm bothers me to some degree all the time. The more I do, the more it hurts. I also feel like I am getting some dramatically different information from my various doctors. I am trying to get an appointment to see my surgeon that performed the specialized lymph procedure. I thought I had one on the books for the end of August, but looking at my health app, now I don’t see it. Frustrating...and just another time I wish I could properly remember who I spoke to and why I felt the appointment had been set. I definitely need a doctor to help me navigate this portion of my care and am still working on figuring that out.
Unfortunately, my radiation oncologist was unable to meet with me until August 2. The date is coming quickly now, and it is definitely soon enough that it does not affect a treatment plan either way, but feeling uncertain about radiation and feeling like that decision is once again looming is difficult.
Reconstruction on my right breast takes place very soon. Surgery is Tuesday, July 27th, and I have never been more excited for surgery in my life. I really dislike the expander. It is very uncomfortable and I can’t wait to get it out! While there are still many restrictions for 4-6 weeks after this surgery, the recovery and pain is supposed to be much easier than the previous procedures and I am grateful for that.
To complicate things a bit more, on the morning of Sunday, July 4th, I was walking along railroad tracks to a small parade with the family and some friends, and I fell. I landed directly on the steel rail. I busted my chin open and displaced my expander. It made for a very eventful morning. I received six stitches in my chin. My chest and ribs have hurt quite a bit since the fall. At first, I thought I popped the expander but it seems I just caused it to majorly shift. A chest x-ray indicates no broken ribs. One of my doctors explained that the bruised ribs, movement of the expander, and my body generally unhappy with the foreign body in my chest, could easily explain the pain. I cannot lay down or sit up without wincing, and sneezing, coughing, laughing all cause sharp pains. This fall has also stopped my physical therapy progress, but my PT assured me the set back shouldn’t change things overall, and for now, I just need to let my chest heal.
I have so many doctors these days, but I also lost a doctor. My PCP left the practice and I currently do not have a primary care doctor. I am trying to decide if I should try to find a doctor at Stanford to consolidate/streamline things, or if I find a new doctor at PAMF closer to home. I have received conflicting info about this from the doctors/NPs I have at Stanford as well. I need to make a decision though. When I fell on July 4th, I didn’t even have a doctor I could message or see. I also need to see someone in general.
I am still really struggling with sleep. {Another reason I need a PCP.} I started this post around 5am after writing it in my head for over an hour. I do think I have figured out that anxiety is the main cause of my major sleep issues. Some nights I don’t sleep well, but that is something we all deal with. It is the nights I literally can’t sleep that are so hard. Only being able to sleep on my back (which I have never liked) doesn’t help things. I am hopeful that once I recover from this next surgery, I will be comfortable on my left side. I have had some doctors already tell me I should never sleep on my right side regularly again, which is disappointing since that has always been my preferred way to sleep.
I feel like this post seems a bit whiny, and I apologize if it comes across that way. I will say that as I have moved from the posts being mainly information, process and decisions to side effects and how I feel, I have been more hesitant to write. I don’t want to sound like I am complaining, and it is hard to write these days and not feel that way.