I finished my high dose IV Interferon today. It was emotionally great. Now I’m trying to finish packing my bags. My parents have been doing most of it. I’m at the threshold of tears because it seems so overwhelming. And I’m just trying to pack my carry on. Its 11am and I have a 6am flight.
I know I’m really happy to be done, but right now I feel so tired.
Its going to be a long day getting back in NYC.
A famly friend was over, with her whole family (dog included.) Her new sister in law is a Reiki practitioner. (I think I mentioned the wedding a few weeks ago) So she did some work on me. A lot of it was similar to what my massage person has done. Certain ways of holding and touching the feet and ankles, holding & rubbing the belly. By the time she was done, I was so deeply relaxed I fell asleep for 3 hours.
I guess the idea is that the chi is blocked and the Reiki helps unblock the chi. So it leads to a quickening of the healing process. I don’t know whether it was just psychosomatic, but I was very relaxed from it. Its hard to say.
Not so relaxed now, though. Sunday night is such an emotionally turbulent time for me. Tomorrow I will hopefully start the final week of the treatment. I hope I clear the liver test. I haven’t taken any Tylenol for two weeks, so that is not a factor. I feel pretty good; I mean *right now* I have a pit in my stomach and have been crying off and on, but before I started thinking about the blood tests tomorrow, I was felling pretty good.
N.B. I noticed that I had a montly archive on the side of the blog. It shocked me to realize that I had been here for so long. It has been five weeks, going on the sixth.
I don’t quite understand, but Saturdays are the hardest day of the week. I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard. Same as the previous weeks. I sleep in way too late. Have no energy. Cry for no reason. Can’t eat. No fun.
Today the plan was to go to the beach. Really, it was my brother’s plan. To take KM to the Oregon coast, and to let one of the dogs play in the wet and. I was the limiting factor. He kept asking me if i was ready yet. I was still in my bathrobe. I knew that we were going to be getting there really late. I felt pressure. And then I started crying. I didn’t want to hold them back, but I aslo wanted to go. I also didnt want to go, but I didn’t want to give up and not go. Oh, what a jumble in my head.
I did go. It was worth it. The wind was strong. The ocean was big. The dog was really happy. I slept on the way there and the way back.
x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time. LK and I are going to hang out on Monday, but other than that, my friends have returned home. I am, of course, a little bit sad from that. But I also know that I have all my friends in NYC when I return. Seven days.
I’m feeling really stifled by my family right now. I know they don’t mean to. But it happens. I’m really looking forward to going back to my regular life.
That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with. From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally. NYC/Brooklyn is going to be a culture shock. It is going to be hard again. And there are going to be lots of people.
this is the guided imagery meditation i do right as i am going to sleep, which is “an especially powerful time” according to Belleruth.
Belleruth Naparstek’s Meditations to Relieve Stress
It’s kind of supercheese. But it totally works:
i haven’t made it past the first five minutes
i fall asleep each time
that’s the idea, of course. she says so. in my ear.
i have one about Cancer, but i have been kind of scared of it. but i will try it out soon.
It wasn’t as bad as the first day for sure, but I did have the chills/fever pattern. I was so worried about my liver function being low enough, I didn’t take any preventative Tylenol (as I had been the first two weeks), so I immediately felt the effects even as I was getting up from the infusion chair. And definitely on the way home in the car.
When I got home I took some Tylenol and Advil, and crawled into bed with all the covers and the heating pad. My muscles were on the threshold of contracting and doing the chills/shake thing that Bob told me about. But I didn’t go into shakes. I hugged the heating pad around my chest, slept off the chill for an hour and a half, and woke up sweating with a mild fever feeling. And hungry.
Following my Naturopath’s advice, I ate a lot, exercised a bit (15 minute walk), and am about to go meditate. I feel much more in control mentally. And, of course, I am control minded, shall we say. (Appending the work “freak” just seems unsavory in this context…)
my liver function was too high, so i am not getting drugs this week. this was a kind of a let down. (i am drinking a detox tea to help my liver get ready for its test on monday)
the unexpected silver lining is that i get to feel normal again for the week.
i have an appetite, some energy, and my sense of humor back.
up to this point, i have had absolutely zero appetite, been sleeping 14-16hrs a day, and yawning constantly. and kind of emotionally ‘flat.’ not that much pizzaz, shall we say. (which is to say, dull and emotionless…)
i started to feel it on tuesday, but it took until wednesday for my appetite to really come back. around dinnertime i told my mom that i wanted to go out for dinner. like, i wanted to go out somewhere nice, joking that i only had another five days of enjoying food, before the drugs started again. she laughed and asked where, and I mentioned this one restaurant Higgins that I had never been to. turns out they had a gift certificate that had been sitting around for a year, and she made reservations.
i also went for a bike ride with my dad. just three miles around the fairmount loop.
and i drove the car over to my friend KT’s studio. first car driving this trip, which is the same as saying first car driving since last thanksgiving (9 months?). At thanksgiving I scraped the front end of my dad’s car in a parking garage.
Chemo today was easy. And i’m doing okay w/ side effects. (None so far besides fatigue) I didn’t get as tired as I have been. Many yawns, but that is it. I find that eating helps me stay awake, and I have found a few things I can reliably eat. Salad, pasta salad, water, bread.
I’m getting good at showing up, getting plugged in, and then falling asleep while the IV fluids and Interferon drip into me. It does not scare me anymore.
They drew my blood and did the tests on it. My liver function is high, and my white blood cells are low, but this is expected. I’ve got 20% more to go before they have to cut the dose. But my immune system is close to being compromised. They used the word Neutropenic (http://en.wikipedia.org/wiki/Neutropenia). I’m not there yet, but that is the risk.
I kind of have a little crush on the nurse that does my chemo. Not a real crush. More like a nurse crush. Like a “You just stuck a needle in my arm” crush. Its tiny, and by saying it, I either risk killing it all together, or getting it blown out of proportion! LOL.
I spent most of today in bed. Total fatigue. I lost my appetite too. I guess that will mark the beginning of the chemo negative 15. Which is the opposite of the freshman 15.
I weighed in at 201.5 this week. I haven’t crossed 200 since I was a ski racer (2nd mention in less than a week!) and then it was all muscle. Right now, it is *not* all muscle. LOL. It is the result of lying in bed for 6 weeks recovering from surgeries.
And it is also the constipation. All these drugs they give you stop up the tubes. Lets just say I’m full of shit right now…
I was lying in my parents glass room as the sun went down listening to Bach’s Cello Suite, regretting that I didn’t even want chocolate, and realized what I really wanted was a milkshake. So off we go to Ben and Jerry’s. Maybe I’ll even get some pleasure out of this.
Today is Friday. I didn’t have Physical Therapy or Massage Therapy this morning, so I slept in. Until Noon. And I’m still sleepy, but I have to get myself ready for chemo.
Yesterday was the day I got tired
To quote the literature the side effects for the first and/or second week are “Flu-like syndrome, consisting of fever, chills, malaise and myalgias… This is usually dose-related and appears early in therapy.” Been there, done that. My fever is down, my chills are going away, i’m still a little achy. But now I’m tired. Really tired.
Again, the literature: “Unlike fever, fatigue does not decrease over time; in fact, it may persist and even intensify as therapy continues. Physical or mental fatigue accompanied by cognitive deficits may occur. Other long-term concerns for patients receiving interferon therapy are fatigue, confusion and depression. This fatigue may be dose limiting and is actually very difficult to manage. Because the peak action of the drug occurs 3–12 hours following administration and its half-life is two hours, the patient should be advised to take the drug in the evening. Patients should also be instructed to pace their activities.”
The nurses, and Bob (the guy from day two) kept saying two things: drink more water, and get more exercise. The more I exercise the more I energy I have. And obviously, the converse applies too. This make sense, though is easier said than done.
I spent most of yesterday sleepwalking.
I went for massage, which was wonderful, and relaxing. So relaxing I fell asleep on the massage table. I have never done that before. I left there somewhere inbetween a trance and asleep on my feet. I came home and checked my email. Closed my computer, and then fell asleep in a fetal position with my face on top of it. The laptop was still warm, and I guess that was comforting, or at least made me want to sleep. And I fell asleep in the chemo chair. I put on “Good Night… Music to Sleep by” that O had uploaded for me. I pulled out the leg rest, pushed back the seat back, and immediately fell asleep. I woke up right as the Interferon infusion was finishing.
I went to the bathroom with the IV pole. That was kind of weird. But I got tripped up by all the long tubes, and stepped on one. When I came out I noticed that there was blood running up the tubes for three feet. I was kind of amazed, but I didn’t panic. I just waived for my nurse Laurie, and she came and helped me back to my chair, and flushed it out of the tubes. The interferon had just finished a couple of minutes earlier; my timing was perfect. And Laurie was able to save the IV too.
When I got home, all I wanted to do was sleep. My dad dragged me out for a walk. I knew it was the right thing to do, but I didn’t want to do it. I went anyway. I was really slow. It did feel good, though. He started in on this lecture about how I needed to exercise to get more energy, etc. I cut him off. I told him to stop lecturing. I told him I knew he was right, but that I couldn’t deal with the lecturing. I guess it was also that it seemed like such a clear sign that I was really in deep, which scared me. And also that I had already been home too long b/c my parents were lecturing to me.
When I came back from the walk KT came over and we watched a movie. He brought me a jar of origami cranes from his family. It was really touching. I have folded them before for people who were sick. But never been given them. While its not exactly a first that I had ever hoped for, considering I am already sick I am very glad to have the cranes.
We walked a mile last night. Today when I woke up my calves ached worse than they have ached in memory. It feels like I ran 10 miles hard.
My doctor pushed back the chemo treatment by two weeks becuase the incisions from the previous surgeries were not healing on schedule. Apprently Interferon stops or slows all other normal healing processes. In order to heal one part of my body another part has to suffer.
And yet, in order to keep my energy up, I have to keep walking.
Which one’s gonna give first?
Today was also the day I stopped being able to reply to all of my email.
Off to Chemo. I get my IV out today, and a weekend break.
Chemo day three was uneventful. I got myself psyched up to go, but by the time we were halfway there I was deflated again. And then I realized I had forgotten to take my anti meds (lexapro and klonopin) that morning, so I felt defeated. I shuffled in to the clinic, while my mom went back to the house for my anti meds. They hooked me up, and the IV happened. I shuffled out of there and crumpled into my seat in the car.
My friend AC came by that evening. She is a friend from high school, who I fell somewhat out of touch with for a while, but have been back in touch with over the last two years. My mom made dinner, we chatted, and then I went upstairs to rest for a bit. Anna made her way up, after attempting to help with the dishes (my mom would not let her, LOL.)
We talked. I asked her to hold my hand. This is something I have found really comforting: holding people’s hands.
And I asked her to hold me. I was a little nervous about that, but she understood and was glad to be able to. It is so comforting to me to have people hold me, but it is something that I find really hard to ask for. Both because I feel like I can only ask certain special people. And b/c in the wrong context it could imply emotional and sexual things that are not meant to be implied. It helps that AC is gay, so there it is clear that my request was def not a come-on. LOL.
She held me. It was so nice. I cried. I find I can only cry when someone is holding me.
Before I started the anti drugs I was crying all the time. I would sit down on the subway, and start crying hysterically while some poor 12 year old girl stared at me with compassion and curiosity, and her mother tried to not to look.
Now, the anti drugs keep me from crying. The lexapro makes it so i can’t cry. The klonopin makes it so i dont care that i cant cry.
Though my doses are low, I think. 10mg of lexapro and .25 & .5mg of klonopin. At least that is what a nurse said today when we were talking about adding back in some Ambien.
Anyway, I cried, AC held me, and we talked about everything that was going on. I hadn’t really told her the story, so I did. I showed her my scars. We talked about how it was changing me.
Being held was so wonderful. It is the thing that I want the most. I think that it is a major absence in Cancer care. They have massage, and accupuncture, and complementary care, and nutrition. But no holding. Can you call it Cancer Cuddle Care? I know, it sounds jokey, but I am completely serious.
The problem is that there are undertones to it. Our society needs safe boundaries for anyone to touch anyone else. And people would have to get certified in Cuddling. MPC: Masters in Professional Cuddling?
At some point after I broke up with K, and before started seeing O, I desperately wanted to be held. In a non-sexual way. I went through a laundry list of everyone in New York I could ask to do it, and decided they would either be freaked out by it, or read it as a sexual invitation (and accept). I seriously considered hiring a call girl to come and hold me for an hour. No sex, just holding. I parsed the listings on CL, and realized that wasn’t going to work – they were either cracked out or sexed up. There were no peaceful, caring, call girls on CL. LOL. But it is kind of indicative of how much I wanted to be held. And it was also kind of a low point.
