The irony - I was supposed to race to the oncologist's office after work and pick up my oncotype reports. Wednesday's "high wind advisory" turned out to be a severe wind storm with gusts up to 81 mph reported at the ROC airport. So, around 1:30, I got a phone message saying that Interlakes Oncology lost power in both Batavia and Brockport offices and were closing now and that I would not be able to pick up my reports. Right. Yes, this is how things go. The office manager called me right away and asked what she could do. I called our school office (we were running on a generator at this point) to see if we could accept a fax. Not working. I called Evan and had him dig up the fax number for Sloan and hoped that Interlakes in Monroe county still had power and could send it. (They did and they did - whew)
Onto Wednesday afternoon. The wind storm made dismissal at school a lengthy process. In the meantime I was receiving calls from Will and James' school saying that afterschool care was cancelled and they were putting the kids on the bus to go home! Eeek! I was stuck at school, they were on their way home, and thankfully Evan was not working and was able to meet their bus. We didn't have power at home and, of course, the first thing the kids did when they got home was flush the toilet. So, that meant the well pump lost it's prime and will not recover without a lot of effort and swear words. Got home, put everyone in fleeces, ate pb&banana sandwiches and took the boys over to my brother and SIL's. There were so many trees down that we had to turn around and take detours several times! Thankfully they still had power. James has been a disaster all week in anticipation of being left for 3 nights. Usually the tears don't work on me....but this time they did.
Returned home at 9pm just as Dave was returning from BUF airport. Strongly suggested we get a hotel near the airport so we could shower and leave from there. Nah, Dave said, we'll fly out at the crack of dawn and arrive in NYC, check into the hotel, and take a nice shower before the appointment. Turns out we couldn't check in until later that day.....which is why I spent the whole morning traipsing around classy NYC in my DAMN PAJAMAS! Ugh. Anyway, left Evan in the dark, cold, waterless house - had to flip the well pump circuit breaker for fear that the power would come on and the pump would burn up without a prime. There is an 18 year old in charge of it, after all. Double ugh.
It's now noon and we were able to check in and SHOWER - thank the lord. Heading to appointment next.
Sloan Kettering - wow - we were impressed! We met with an oncologist fellow from Ireland first. His accent, intelligence, and fast-pace were amazing. He knew everything about my case. This is the first time a doctor didn't make errors about what they thought that knew about me. He spent about an hour with us. He knew his stuff, was able to answer our questions, and sited study after study to support everything. We then met with Dr. Comen, along with the fellow, and continued our conversation. They 100% agree that I need chemo. Again, saying that I am so young and that I am raising children - the "young" part never, ever, ever gets old. However, I learned that I am somewhat rare to have this cancer at such a younger age as it usually picks women in their 50s and 60s. Lucky me. We discussed different chemo options. During our visit, they brought my case in front of 5 sets of peers at Sloan so everyone had a chance to weigh in, and in essence, I got 7 different 2nd opinions at that visit. They narrowed my chemo down to 2 options: ACT and TC. Those initials stand for chemo drug cocktails, which I won't even pretend to be able to spell or pronounce! Both cocktails could do the trick, but ACT might be a tad better - but not without some potential side effects of heart problems and leukemia. The chances are small, but there.....but the benefit of the drug outweighs the worry of those side effects. We left there feeling very good about this recommendation. They will write up a report for us to take to my oncologist in Brockport. Sloan says these drugs can be administered without a port in my chest and that the cycles would last 4 months. However, it is up to each individual oncologist office to determine if they want you to have a port. Apparently it depends on how good their nurses are at starting your IV each time. I will always have to use my right arm. Keeping my March 17th surgery date for port placement until I can determine if they need me to get it.
Because I have an estrogen fed cancer, there is some talk of putting me into immediate menopause. The chemo has a chance of starting that process. I could also take Lupron shots to put me into menopause. This would all be decided upon after chemo. Lots of side effects, but namely hot flashes. Dave decided that was a good time and good idea to ask exactly what a hot flash is. Smh. The doctor explained that hell. I then asked the doctor what the life expectancy is of spouses who ask such questions. Apparently it's not a long life expectancy.
Also, after all the oncotype testing hell, they neglected to get my HER2 scores for all the tumors. We have to call and have that done. If I am HER2 positive, I would need an additional chemo drug. They would guess that I am not, but it needs to be checked. So, excited to start that damn process up again....
Left that appointment and went to the wig store that is supposed to be the best in NYC. Set up an appointment for tomorrow. Tried on a couple of wigs......and left and drank a lot of wine.
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