It is easy to forget that I am not the only one weathering this storm.
Here is a email update sent by a loved one to their circle of support. May it offer you more insight then I might or a different view of the road to healing.
- Aliza had her 8th infusion on Monday, April 10th. Her 9th is scheduled for this Monday, April 24th.
- This was a bit different for me as I was home and able to be closer to the action. This is what I saw...
- Monday (infusion day)... everything goes as usual in terms of the drugs and the process... Aliza comes home exhausted and looking very pale.
- Tuesday... she is still very tired but unable to get much rest... her cheeks are flushed...
- Wednesday... Aliza sleeps most of the day on top of a good night's sleep.
- Thursday... Aliza forces herself to eat though the constipation gives her a rising sense of fullness... she waits for the mouth sores to erupt as they usually do at this point...
- Friday... she discovers and reports to me that it is possible to be constipated and have diarrhea at the same time...
- (I'm out of town for Saturday and Sunday morning.)
- Sunday afternoon... we have a wonderful Easter / birthday lunch (we celebrated Jan's - April 13th, Lillian's - April 18th, and my mom's - April 20th birthdays)... the mental fog has lifted somewhat but Aliza is easily overwhelmed if two people talk at the same time or change topics too rapidly.
- Monday and Tuesday... I am out of town once again.
- Wednesday... Aliza is very teary-eyed... she is sitting on the floor of her bedroom surrounded by paperwork and her laptop, crying... she is trying to finish a few work projects that would have been quite easy and routine before the chemotherapy... she is having trouble focusing and connecting her words to her actions... she is very discouraged and her anxiety / grief are palpable... being the trooper that she is, we chunk her focus down, she keeps plugging along, and with help from Rob, gets what needs to be done, done.
- Thursday was a better day... she went to Lillian's music program at school, had coffee with a neighbor, and went to lunch with Jan and my mom.
- Later that night... Aliza shared more of her internal struggle in an email... she wrote... "Monday is coming and I am trying to mark a few things off my list.... my head is a bit clearer tonight so I am attempting to answer a few messages though I recognize that this might be my last response for a season. Its is getting harder and harder to respond- the physical task of typing (fumbling fingers) and the mental task of gathering thoughts and ideas plus the struggle of auto correct and poor spelling mean that it takes longer and longer to respond. Its hard for me to have messages in my inbox and not answer back (just like receiving a letter or gift in the mail). I know its not forever but its still another thing that probably needs to be shelved... and that's hard."
- Further down she added... "chemo 8 has been a lot of focus on what I can't do or can no longer do and that has been hard. And I think by having a few "see you later" messages and blogs will help it to not feel like a pending To Do thing and something that is not right now. I want to change my 'have to' into 'want to's' and I want to use what energy I have in time with my Sparkles and the joy in the moment (not the have to or the should do's)... The hardest part is changing my mindset of things I think I should do to things I want to do and CHOOSE... Its the loss of choice I grieve the most."
- Breathing test and CT scan results... according to Aliza, she passed the breathing test... the doctor replied to her follow-up email with something like, "It looks like we are on track." Later when I asked Aliza about it she told me that the CT scan was more for the doctor than it was for her. She seemed comfortable with him knowing more about what is going on with her body than she does at this point. The only changes that were imagined is that one of the chemo drugs would be stopped, but that was not the case. Rob and Aliza meet with Dr. Azar this Monday before her infusion. We anticipate a fuller report and conversation.
- Added to all of this, Aliza has shared with me another aspect of her emotional, intellectual, and spiritual preparation.
- She is hoping that she falls in the 70% group that reaches a point of remission after the 12 infusions.
- At the same time she acknowledges that she could require more infusions, different drugs, and perhaps some stem cell treatment.
- In other words, at this point she is hoping for the best and preparing for more difficulty and trouble.
- She has also realized that even with the best case scenario, her full recovery will be extensive.
- If everything stays on track, the 12th infusion will fall on Monday, June 5th.
- Three to four weeks after that, she will have a full body PET scan to confirm that the cancer is in remission.
- If the PET scan results are negative, meaning no cancer, and the remission is confirmed, she will have her port removed a week or two after those results are in. (She was hoping that it would be done before her 10th anniversary, which is July 7th, but that won't be the case.)
- She will be dealing with the side effects of the chemo (it will still be in her system) for several weeks, if not 4-6 months.
- After all of this, she will begin slowly getting back into shape, resuming more of her routine, and taking on her responsibilities at home and at work.
This is possibly more information than you wanted. I thought it would be best to err on the side of more being more than my usual approach of less is more. Thanks for your patience and understanding.
