A week of tough decisions

Jen resumed chemo last Tuesday night.  She just completed the final dose of her current cycle last night.   Jen is feeling the effects and as per usual she will probably be feeling pretty awful until near the end of the week.  She has also started taking a low dose of Bactrim since her Lymphocyte count is a little low.  This is a common practice for chemo patients and Jen has been on it previously as well.  It can unfortunately lower white counts, but is given to prevent a specific type of serious pneumonia that can occur with low Lymphocyte counts.
Jen went to City of Hope this week for some preliminary blood work and a required physical assessment prior to beginning the first phase of the Car-T trial.  Jen is scheduled for her Leukapheresis on May 2nd.  It will be a long day with her appointment time starting at 5am that day.  Her next scan is the following day - Thursday, May 3rd.
As I mentioned in the last post, City of Hope reviewed their protocol regarding Optune prior to the Leukapheresis after I asked them for a reconsideration.  They have now changed this requirement for everyone going forward.  Hopefully this will be of benefit for others in the future.  Unfortunately, in spite of this, Jen has had to temporarily discontinue using the Optune.  Her scalp wounds finally reached a point where she was unable to continue.  This past Tuesday we debated continuing and decided to keep going.   At about 3am on Wednesday morning the machine began alarming.   Over the next 7 hours we tried everything to make it work.  We changed out every piece of hardware,  changed multiple arrays, all to no avail.  The machine kept erroring.   All this was occurring while we were both exhausted,  Jen was feeling miserable from the chemo,  and on top of all that had swollen eyes and a sneezing fit for hours due to her allergies.  We finally had no choice but to suspend using the device.   We believe some of the scalp wounds were just too bad to allow sufficient contact between the arrays and her skin.   The reality is, we probably pushed longer than we should have, but we were both afraid to stop.  It will probably take at least 2 weeks for her scalp to heal enough to resume.  I wish we could have planned for her stop date instead of being forced into it.  I would have scheduled a wound care appointment for the day she disconnected.  The soonest appointment we could get was this upcoming Tuesday.   Jen is enjoying her new found freedom being untethered, but again if we had planned better,  this freedom would probably be better enjoyed when she wasn't on chemo.
We are both a little nervous about suspending the Optune. especially in light of Jen's last scan.  If the next scan does show growth though, and we hadn't halted,  surgical options would be off the table due to the increased risk of infection from the scalp wounds.   Allowing the skin to heal will ensure we have those options available if needed.  Of course, stopping the Optune, could lead to growth.  There really are no good options, but this was a necessary step.  We both pray that the chemo and diet will be enough to hold the cancer at bay.  Please continue to keep us in your thoughts and prayers.
And on top of all this,  I will be having knee surgery this Friday.  Hopefully, everything will go well and Jen and I can get back to going for walks and hiking - an activity we both really enjoy.