First of all, today was my last day of radiation. They made my treatment extra long, I think. I am really glad for it to be over with. Quite painful. My head is still scabbed up, itchy, bald and unattractive. Scott has been lathering on lots of aloe vera which helps for a few minutes. I know this is a milestone but it was hard to get excited about it for some reason.
Scott and Annabel and I had a great Thanksgiving at home together. Scott made white chicken chili and we watched some Disney movies on TV; Mary Poppins, part of Snow White and Sleeping Beauty. We didn't watch them all day, they were sort of just on in the background.
On Tuesday, I turned 37. It was a pretty good day. I wasn't sure how I would feel but I was pretty happy most of the day. Scott and I dropped Annabel off at school. It was their Thanksgiving lunch day. She wanted me to hold her hand to walk inside. That was very special for me because I don't ordinarily go in with her. At radiation, one of the ladies tried to give me a cupcake. When I saw my nurse practitioner, I got a chorus of Happy Birthday from she and the nurses. After school, Annabel brought me a handmade birthday card from her class. There were also lots of birthday presents and treats throughout the day. The only thing that went wrong was an attempt to go for sushi. We got there; sat down; I was too nauseated; we left. Scott picked up some Japanese hibachi instead. I threw up (at home, in the toilet). Other than that it was a really good day.
We had a small family celebration on Saturday for my birthday, our anniversary and Thanksgiving. Dad and Gail, Jeff and Suz, Kim and Karen were all here to celebrate with Scott, Annabel and me. I ate a ton of food -probably more than since I've been home from the hospital -including a slice of Magpie's cake. Yum. I hit the wall and then I hit the bed. It was great to have everyone here for a holiday. We had lots of good visiting and lots of good food. Unfortunately, Karen had to leave on Sunday. But I'm looking forward to seeing her again in December.
Next up is neupogen shots next week to boost my blood counts. We are still preparing for the PEG feeding tube though maybe it is still up in the air. I still lean towards not getting it but I will do it with the encouragement of my doctors. I have scans scheduled soon to check the cancer in my body. I have something else scheduled to check the level of cancer in my neuro system. Both those will dictate the next course of action. Other than that, I am just working on recovering which means mostly sitting in my chair. I'm starting to get antsy so I think that must mean that I'm getting better. My eyesight is still the same. Scott is working on some different ways to help me with the visual impairment since I'm not able to communicate via computer or text without assistance, can't drive. In general, I can't see, the TV, or anything else. This is probably the most frustrating part of my life.
I spoke with Shannon today about the benefit. I'm shocked by how much work is going into it, how many people are involved and how generous everyone is. I am touched. I am looking forward to seeing everyone.
Thursday, November 18, 2010
On Oct 7, I had my Duke surgery for implant and lymph node removal. I spent one night in the hospital. Everything went well. Prior to any of the Duke consultations, however, I had been having lots of headaches. I was worried about that.
After the surgery, I left the hospital to recuperate a couple more days in Durham. That Sunday night, I ended up back in Duke’s ER. My headache was out of control and I was having spells of disorientation and confusion. I was a guinea pig for a week while I was there for observation and tests. They did not find anything while I was there. My tests included another brain MRI, more scans, a lumbar punch. We drove home that Wednesday after a follow-up visit with my surgeon. I got a good report from him –decent pathology –not all clear but a tiny bit of cancer left in there which we expected. My headaches were controlled with medication at that point. I felt like we were waiting a lot while we were at the hospital but we had a lot of laughs. Courtney visited for two nights. She smuggled beer in for Scott and she brought me jammies. There was also an Oodles of Noodles restaurant around the corner where we ate the whole time. The nurses there were awesome.
We spent the night in Charlotte and got home on Thursday. We tried to unpack, acclimate to being home again after all that time and enjoy Annabel’s company. I got a call from Dr. Fanning on Friday afternoon late. She explained the results of the lumbar puncture. I have carcinomatous meningitis. Essentially, my cancer has spread to my spinal fluid and head. There is no tumor. It’s free floating cancer cells.
Because of my new diagnosis, I had more consults lined up with other doctors. The plan was to install an Omaya port in my head to administer chemo to the closed brain system and also get a power port like the one I used to have for administering whole body chemo and drawing blood.
The day I saw the neurosurgeon, I wasn’t feeling well and when I went to his office for my consultation, I was in pain and throwing up, still disoriented and confused. It was very frightening to be aware of being that far away from my brain. I remember trying to talk to my doctor and the words weren’t coming out. So probably the reason I spent the next time away from my body. The neurosurgeon sent me to the ER to check in to the hospital so that I could get some pain relief. I was there for 10 days mostly unaware. I was having seizures while I was there. I had lots of visitors and caretakers.
Accompanying me home from the hospital were some mechanical asssssisstances. A wheeled sitting device, a rubber footed shower sitting device, a portable terlet – all of which, I must say are most convenient. They have been used.
Since I’ve been home, I’ve been slowly coming around. I’m going to radiation everyday right now. They’re trying to get me to have a peg feeding tube. I’m resisting but I guess I have to do it –next week probably.
My eyesight has deteriorated to the point that I cannot read, watch TV or type on the computer. The doctors are hopeful my current course of radiation and chemo will cause whatever is stopping me from being able to read, watch TV or type on the computer to go away. I am not blind but my vision is very impaired. I can see shapes. So obviously, I have an excuse for my late blog this time. I was able to go to an ophthalmologist this morning for a check-up and he says that everything works well it’s just the way it works together so we’re still hopeful the situation will resolve itself.
I have six more treatments of radiation left. This time around the radiation has been very uncomfortable. I have to lay on my stomach on the table with my head clipped in. Did I say it’s very uncomfortable?
The last week or so my head has been scabbing up in preparation to fall out. So the past few days, I’ve been sitting around picking my hair out. Today, Karen and Scott cut and clipped it so I’m in less pain now although bald with a crusty head. Yum. This project involved a sheet and a chair and some scissors and some clippers and a shower at the end…. and then a nap –the emotional stress was too much. Annabel tells me she does not like it but she’s glad to have the bag that I used to collect my hair the past few days. (Karen editorial –she would not have used a bag had I not provided a bag –it would have been all over the floor.)
Other than all of this business, I am very much looking forward to my 7th wedding anniversary in a couple days on the 20th. Scott has taken phenomenal care of me and Annabel during this time. You never know what you sign up for when you get married. He has bravely and lovingly taken charge of our family situation and I love him very much.
Annabel is in preschool now. She seems to really be enjoying it. She has a friend. She is getting sassier every day. The other morning on our way out the door, she exclaimed, “oh, shit, my sunglasses.” Scott and Karen didn’t even hear it. I told her to say “oh, no” instead. We haven’t heard it again but I know it’s on her mind. She has been thriving with all the extra attention and company we have had in the house. She’s taking great care of me too. Last night she tried to help feed me and spilled chicken noodle soup all over my shirt. She is very sweet and cute and very busy.
I’m very humbled and honored about the upcoming Hall benefit taking place on Dec 10th. It makes my heart happy and spirit glad that so many people would think of us. I look forward to seeing everybody there.