12.27.10

AYNSLEY:
My mom sounds like Kermit The Frog. I don't know how else to describe it; it's adorable. I know that the speech changes are a result of the tumors pressing on her brain stem or
otherwise interfering with nerve function, but she sounds so damn cute that it's not a tragic side effect to me. The sad ones are plentiful: loss of vision, loss of balance, pain, discomfort, difficulty swallowing, auditory hallucinations, loss of hearing...I could go on and on. It's also fascinating to watch the rapid progression of the cancer-two days ago, she had double vision. Yesterday, the double vision was much worse and her depth perception left. Today she couldn't tell the difference between me and her African-American nurse. I won't be surprised if tomorrow she can't see at all.

Today was...wow. SO intense. The day started with me crying because Gary had to go home-I was planning to drive him to the airport around 8:45am and then head to the hospital. I know he has to go home at some point (and so do I), but I really didn't feel ready for him to leave, especially knowing that today would be the first real business day at the hospital since I've been here. I kept checking the flight status online as I futzed about the house getting ready for the day. It was my best morning yet-I folded all of the clothes I've worn, found my watch and put it on, washed my hair and made and ate breakfast. And compulsively checked Gary's flight status. It kept saying delayed one minute. For an hour. Finally I broke down sobbing and explained that I wasn't trying to guilt trip him, but since he was supposed to fly into Newark and NJ Transit wasn't running and it wasn't safe to be in a cab and his flight would probably be delayed, maybe he could just stay for another day...I know he felt bad and was trying to figure out how to possibly change the flight when I refreshed the flight status and it was cancelled. Best news in a day.

While Gary stayed on hold with Expedia (2 hours, folks!) I left for the hospital. (Gary came later with Ross and Claudia). When I arrived, Mom had already had an MRI on the middle and lower part of her back. The MRI showed that the cancer was all over her spine (which we suspected) and the oncologist determined that the radiation treatment should go all down her spine. This means that her radiation treatments will be a little longer in duration and will probably make her more tired. Today the radiation treatment included more mapping on her mid and lower spine since the first two treatments were only of her head and neck. The position she needs to be in for radiation is really uncomfortable for her and makes it hard for her to breathe since she already has trouble swallowing. She never complains about it, but always makes sure to tell the radiation technicians and us to make sure she's breathing okay.

So, I arrived after she had tried to eat a little bit of breakfast. Shortly thereafter, the hospitalist and neurosurgeon arrived to discuss the next bit of treatment: chemotherapy. Since the cancer is progressing so rapidly, the doctors suggested starting chemotherapy sooner rather than later. The original idea was 5 weeks of radiation followed by chemo, but it's clear that if she has any chance of relieving symptoms, she'll need to start chemo immediately. The chemo needs to be administered directly into the head through what's called an Ommaya Reservoir (not sure if I'm spelling that correctly), which needed to be surgically implanted. The neurosurgeon told us we could do the surgery today or sometime this week and Mom elected to do it today. Directly following radiation. So we scheduled radiation at 3pm and surgery at 5pm. I asked if she would have a local or general anesthesia and the surgeon said definitely general, which made me very nervous, especially with her swallowing difficulty. I asked if he could do a local and he said he really couldn't, but that the surgery was very quick-15 minutes or so-and that that was really the best bet. So I asked Mom what she wanted to do and she said surgery.

The radiation treatment went well-Ross, Dad and I had a sit down with the nurse during the treatment and got some questions answered. Immediately after the treatment, Mom was queasy, but didn't vomit. We pretty much went directly from radiation to surgery. The four of us had a lot of waiting time in the OR prep room until the anesthesiologist came in and assessed her. He explained that he would give her the medicine and she would go to sleep and he would put in a breathing tube during the surgery. After the surgery was over, he'd make sure her throat wasn't swollen and remove the tube and wake her up. But there was a chance that her throat wouldn't be okay for them to remove the tube in which case they'd keep her asleep and move her to ICU until they thought she could breathe on her own. She said okay and he left to go prepare. Then she grabbed our hands and said, "Here's the plan. I'm going to have a successful surgery, the breathing tube is going to come out just fine afterwards and I'm going to breathe perfectly. I'll see you in a couple of hours." Then she squeezed all of our hands tightly, to seal the deal.

Well, that was the plan, and that's what happened. The surgery went well and she was back in her room two hours later, feeling better than she had all day. Despite having the front quarter of her head shaved (which she chalked up to her new breakdancing hair-do), her eyes were open wider than they've been in days, her pain was down despite being detached from her meds for 5 hours and her throat felt better-she had an easier time swallowing. The friends and family who were in the waiting room rotated in to say hi and she was happy to visit with everyone for a few minutes. She joked about her new hair do, asked friends for foot rubs and proudly introduced Ross, Claudia, Gary and me to her new nurses. It ended up being a great night.

Other things worth noting from the day:

• we do assisted yoga stretches in bed-mostly hamstring lengthening and hip opening. When the OR nurse came in the prep room to find mom in Happy Baby pose, she said she never seen anything quite like that and Mom told her it should be required pre-op.
• we overheard Mom's nurse tell another nurse that Mom was a rock star
• Mom's blood pressure has come down a lot from yesterday's high of 170/100 (maybe a medication side effect)
• we had a visit from the speech pathologist who wants to test Mom's swallowing tomorrow. She's concerned that Mom is aspirating liquids and that she may develop pneumonia. No more drinking through a straw and she needs to be propped up to almost 90 degrees when eating and drinking.

Finally, I had so many emails, texts and voicemails today and I simply didn't get a chance to reply-we were in the radiation room, the OR, meeting with doctors, speech therapists, etc. And it's now 11:30 and I'm exhausted. But know that we all SO appreciate all of the messages and thoughts of love and support we've received and I'll reply as soon as I have some down time. Also, if I do respond during the day, it's via my phone, so please excuse all typos!