My New Digs

It’s day two, or day -5, however you want to look at it. Let the pain begin.
I’m trying to get accustomed to my surroundings and cope with how my body will be feeling. My room varies from cold to boiling. I haven’t quite figured out the thermostat middle ground. My nurse last evening said there isn’t one. I’ll work it out. I have my robe.
I have a Boston size bathroom, which I suppose is better than a NY size bathroom. I could sit on the toilet and brush my teeth at the same time, but that just sounds unsanitary.
My room is a little. . . sterile , but I’ll get used to it. My guests have to don face masks and gloves to visit. I’ll have to wear them also if I venture outside my room, and then I’m only allowed to walk within the pod, a 600 ft circle.
I can hear a patient in the room next door moaning and crying. Is that going to be me anytime soon?
And so goes the loss of my remaining independence down the tubes. I now have to ask permission to take my medications. I need assistance with covering my lines to shower. Most importantly, and most difficult, I need to trust whoever is taking care of me knows what they are doing.
Don’t get me wrong, I love the nurses. Everyone so far has been incredibly friendly. The PA was good. I’m told my doctor is a genius.
I think a little wariness regarding who is now controlling the outcome of your life is normal, no matter how competent you believe they are. I always prescribed to the school of thought that if I wanted something done right, I would have to do it myself, but I can’t do this myself. I can’t prescribe my own medications and start my own lines. Soon, I may not be able to walk on my own.
I can’t even be Miss Independent who depends on no one for support. I’m not that person anymore, and I like who I am now. I’m glad I’m letting my trust issues go. The love, support, and positive reinforcement I’ve received by making these changes is astounding. It amazes me how much good can come into your life once you welcome it openly.
The world is not bad. In fact, it’s more peaceful than almost any other time in history. Eighty percent of violence takes place in Iraq and Afghanistan. Our minds perceive the world as a dangerous place since images of violence and tragedy are at our fingertips twenty-four seven. After Sep. 11, it was theorized that the repeated images of the falling towers resulted in post traumatic stress for the viewers at home, not only the people who were present.
So stop watching the news people. Watch me instead. Let me tell you all the bad and good things about being in my position.
Dana Farber has valet and a concierge desk. I was just joking when I told people I was going on vacation, but the hospital is working it out and making my stay as vacation-like as possible. The food is good, and when the kitchen picks up, they say “room service.” I can order whatever I want, whenever I want.
I think this will be my son’s favorite feature. He loves hotels and room service. This will also be good for me. Hopefully, I’ll pack back on the five pounds I dropped last week.
The bathroom does leave something to be desired. If I was paying over $1250 a night on the outside, I’d want something a little more luxurious. When I went to shower this morning, some disgruntled housekeeper had cleaned the shower and positioned the head to spray Andre the giant, not mini Hillary. I turned the handle, thinking I was safe, and the water hit me, a straight shot to the face! Who knew figuring out the shower would be such an adventure.
I no longer have to clean or do laundry. I don’t have to cook. All I have to do is concentrate on healing, but believe it or not, I’ll miss these tasks.
I’m glad I picked up my computer again. I need a purpose. Darwin said “evolve or die.” With most of humanities threats gone, aside from cancer and ourselves, I’m going to think Darwin meant mentally. Evolve mentally, keep your purpose. Make yourself useful. This gives me something to concentrate on when my body starts to fail. I need to know I have something left to contribute to society, that I have a purpose to live, that I’m not just taking up space. Without this drive, I think I may have died a long time ago.

The Bucket List

If you’ve never heard of the concept of a “bucket list” let me familiarize you with the concept. This is a list of activities to do before you “kick the bucket.” I, personally, have never had a bucket list. It sounds defeatist. If I really want to do something, I have always gone forward, but some friends of mine do, and their ideas amuse me.
I helped a friend check off a task on her bucket list earlier this year. She wanted to go swimming naked in the ocean. I told her to go for it, but this wasn’t on my bucket list, and if it was, we would be in St.Maarten, not Barbados, where skinny dipping is illegal. I told her I’d stay on the beach and look out for perverts.
She said we’d do it the next night. Well, the next night came and went and pretty soon it was the final night of our trip. We’d gone out celebrating. I banged backed a couple rum punches and decided there was no way my girl would go home without checking naked swimming off her list. I dragged her out to the beach when we got back to the hotel.
I stripped off my clothes and dove in. She waded tentatively and flopped in. “Hill,” I heard quietly. “This is nice, but I don’t know how to swim.”
“WHAT?! It’s not that kind of list. Are you trying to kill yourself? You can’t hop in the ocean naked at night and not know how to swim” I hollered.
I thought she wasn’t completing her list because she was embarrassed to swim naked, not scared of drowning.
We got out of the ocean, but my drunk, wet self just could not figure out the complicated dress I had put myself in earlier in the evening. My sober friend tried helping, but it was useless. I wrapped myself in my white, now see-through scarf, and prayed everyone was asleep while I started running to the room.
But no, I was not that lucky either, I looked up to see some dark man hiding in the shadows watching my white ass running around the beach half dressed and half draped in a transparent scarf.
Moral of the story, don’t add tasks that include nudity to your bucket list, and if you do, don’t include me in their completion. I, obviously, can’t handle them.
But in all seriousness, if you follow all the rules, you will miss out on the fun. Now go, and have some harmless good times in honor of me.

Wired for Sound

I’m done eating my strawberries, mangoes, and kiwis. I’ve gotten the cucumbers, green beans, and salads from the Farmer’s Market out of my system. I’ve had my Burdick’s coffee and been out to eat at Loui Loui’s for lobster ravioli. I’ve said peace out to my partying ways until 2009. I’m now looking forward to my second re-birthday.
I did miss the New Kids concert with Maggie this past week, and I wasn’t able to go out in B-town on Thursday night. I wanted to do both prior to climbing into my bubble, but I do have responsibilities. Just a little warning, so you all know, once I am out of isolation, it will be on. I’ll have some energy that will need to be worked out, and if you don’t know what happens when that time comes, use your imagination.
Right now, I am grouchy. I’m going to keep how I feel edited, but I don’t even want to hang out with myself. My parents took my suggestion to go check into the hotel. If my parents can’t take me, no one can.
My throat hurts. I’m filled with tubes again, an intravenous line in my right hand and a hickman line (tunneled central catheter to my heart) on the left side of my chest. I’m wired for sound. I shouldn’t even need to connect to the wireless network for the internet.
I’m a little scared. I don’t know anyone, personally, who has survived a bone marrow transplant. I certainly don’t know anyone who has survived two. I called a previous patient my doctor recommended to hear her perspective. She was very positive. She is a survivor. I was surprised how reassuring it was to speak with someone who had been where I am now. I always disregarded the support group idea. My recommendation: don’t knock it until you try it. When I grow up, I’m going to be like her.
My friend Liz from college called too yesterday. She’s a special breed: 5’8”, 110 lbs., manhattanite. The type of mythological breed I didn’t believe existed until I met her. She’s the woman who wants to be a trophy wife and is gorgeous enough to have a full time job of keeping her hand in her man’s wallet. If you have to ask if you’re rich enough to afford her, you’re not. I don’t always understand her, but she amuses me. She took time out of her busy schedule of being a gorgeous, suburban newly-wed (to a “golf pro”) to call me. She’s a survivor of non-Hodgkin’s lymphoma.
She reminded me that this will end. She told me she thought her disease would go on forever, but her life has gone on, and so will mine.
October 9, 2008 is day 0. This sounds ominous, but I’ll have a brand new designer immune system imported from Europe just for me. No freezing. No preservatives. It’s coming straight to me. This will be my second re-birthday and third birthday. No woman needs three birthdays a year, unless you are sending presents, but really, how old will this make me?
The plan, today’s plan, is that I will be discharged on Oct. 10 (Day 1), and return day 3,4,6,7, & 11. I’m confused. I was told I’d be held until day 6. I’d made my hotel reservations accordingly. Then, the PA asks me if I’ve talked to a woman I’ve never heard of to coordinate my care. How can I talk to her if I don’t know who she is?
No wonder I’m so confused, if I can’t figure out how to coordinate this system, who can? I called everybody I know. I think we all know that if I want to be seen and heard, you can’t miss me.
There is no cause for worry. It won’t solve anything. Now that I’m on B&G’s radar, I’ll connect with the right people. Everything will be just fine. It always has been. Someone big is looking out for me. I hope my parents and family feel the same.

Go time

Ode to My (s)mother- family relations

I had a PET scan this am. I had been spiking fevers in the evening and the am. My cheeks were flushed. I was concerned my cancer had come back. I live in fear of a reoccurrence prior to my transplant that would diminish my odds of survival.
The PET scan was clean! Good news, but now I feel a little like an idiot for being so nervous. I know this feeling is probably unfounded because I’m not paranoid if my body REALLY IS out to get me (thanks for the quotable Dr. G).
Nurse Pat also told me I was right to call, which was reassuring, but I still hate the process.
The worst part of my cancer is notifying my family when something goes wrong. My (s)mother’s voice rises, she asks a hundred questions and repeats them indefinitely until I either phone my health care team for her or stop talking to her all together. She’ll call ten times daily, and it better not even cross my mind not to answer, or else she’ll be over as soon as she’s out of work. It’s hard to keep a strong face on for her. I want to be the one freaking out.
Jon puts on his stone face, but his shoulders sink. He starts to pout. He goes into Eeyore mode where everything is a downer. There is no silver lining to his cloud. He vents his frustration on Xander or me. It makes staying positive difficult.
The worst thing about this is, between these two I am not allowed to go anywhere by myself. I have no freedom. If I want to cry it’s usually quietly in bed. If I need to think, I’ll hide in the bathroom. I can’t keep this façade up forever.
Early on in my diagnosis, I was told my confidence was contagious. I’m still hopeful, but it’s getting a lot harder and the obvious anxiety and pity on the faces of everyone I see only makes it worse.
The rest of the reactions of my family are manageable. My father plays on his tractor. My sister also calls 10 times a day, but she makes me laugh and keeps it short. Yanellie only calls 3 times weekly, and Jen gets a pass for being the matriarch of X’s new surrogate family.
Being diagnosed at 23 poses some problems. I had been independent as far as having a family, a job, and a home, but more and more of my peers are staying with the parents until their late twenties. When cancer hit me my mom went back into overdrive, 10x more overprotective than when I was in college.
I used to “forget” to tell her about my appointments so I could control my own medical care. When she started to catch on, I’d invite acceptable caretakers. Now she comes to all my appointments. I try to go by myself. I like the independence. I like my doctors and nurses and think we have a dynamic alone that is not present when my (s)mother is present. But I also need to keep in mind what is best for her. I know she just wants what is best for me.
So here I go, round two tomorrow. It’s fighting time. I'm on my was to Dana Farber and I’m feeling lucky. Remember to keep cheering me on. I’ll be looking out for you.

Hill's AM Routine

How I got Cancer

I have a fever this morning. I had one last evening too, and the day and night before that, and before that. These low grade temperatures have been going for about five days now. They are unnerving.
These fevers are NOT the postpone-the-transplant-she-needs-antibiotics variety. I am taking prophylactic (“just in case”) antibiotics and anti-virals. These are the oh-f***-her-cancer-is-back variety.
The fever is accompanied by muscle aches and fatigue in the evening that will send me to bed by 6 pm to make the feeling stop. Tylenol and motrin have no effect. Narcotics are useless for the pain.
It’s making me want to kick and scream and cry if anything else goes out of order in my life. It’s pushing me towards the psychological breaking point. I can’t believe I’m not there all ready.
I have a lot of four letter peppered ranting sentences I would like to say about this. I’m going to keep those phrases in my head. I don’t want to shock any of you who have never heard my trucker mouth. You can use your imagination.
“Maybe it’s not what she thinks it is,” you may be thinking.
Maybe it isn’t.Maybe it's a virus, but I'm on anti-virals. Maybe it's my head playing tricks on me, giving me psychosomatic fevers. That would certainly be nice, but it was a re-occurrence in August 2006 that made me feel this way and then again in July 2007. My symptoms are not text book, but neither am I. I haven’t had this feeling yet this year. I guess I was past due.
So let’s play a game and try to figure out where the tumor may be this time. We’ll call it “pin the cancer on Hillary” like pin-the-tail-on-the-donkey. I’m guessing a pleural infiltrate on the left since that’s where my pain seems to hurt the most.
I had a feeling my life may go like this. If you’re not interested in science and epidemiology, feel free to phase out right now, because I have a theory. I’ve had it since I was thirteen and my immune system had been misbehaving for years, doing terrible things like giving me pneumonia and bronchitis every year around Christmas. I missed birthday parties and the circus because I was sick. I had mono and was flat on my ass for 2 months!
I decided my bone marrow was defunct. This is why:
I had a difficult delivery. Heather was delivered first, and after that, I was not moving. I had apparently settled in. I did not engage. I was not headed down the birth canal, and the chord was wrapped around my neck.
When I did engage, the chord got tighter. My heart beat was lost.
From the stories I have heard, all hell broke loose. I couldn’t be delivered. Mom needed a caesarean. She needed to get to an OR. We’ll say this process took 10 minutes.
Ten minutes is too long to go without a heartbeat. A c/s was out of the question. I was delivered high forceps, meaning a doctor took some tongs, reached through the canal, and removed me as quickly as possible by the head. My skull was fractured. My facial nerve was damaged. These were not my biggest problems at the time.
I was dead. Dead as in no heart beat; Dead as in blue and not breathing. My apgar score at birth was 0; I improved to a 1 at ten minutes. A one on the apgar scale signifies a slow heartbeat and irregular respirations, a facial grimace and blue extremities.
I receive two phone calls every birthday, one from my mother at 9:50 am, the time of my delivery, and one from the doctor and lifelong friend around 10:30, the time I was revived. I acquired more than two parents at birth. Doc you rock.
I was intubated. I had seizures. My face was half paralyzed.
If you don’t believe this check my records. Ask my mother, doctor, or any nurse who was present. They all seem to remember. A conservative estimate for my period without vital signs is twenty minutes. Permanent tissue death from anoxia starts at 5 minutes. Medically I am not supposed to have the level of mental functioning I do. Apparently, I’m a miracle. At three months old to the day, the hematoma on my head disappeared and I could move both eyes.
How does this contribute to my blood cancer. My theory goes that at the point of delivery, when your chest is released and expands, when you take your first breath, the oxygen acts as a catalyst within your body. The oxygen combines with your blood and circulates throughout beginning the process of cell maturation, such as the process of fetal hemoglobin growing to mature levels. I believe the bone marrow follows a similar unknown process. I believe my process was thrawted in a period when it began to differentiate but could not fully complete the process because of the trauma leaving me with undiiferentiated cells that could never fully differentiate. This is what causes tumors associated with cancer, incomplete cells with nowhere to go. Specifically, I believed I was missing a component in my B-cells that could contribute to leukemia in my twenties. Hodgkin’s lymphoma was not on my radar, but it fits the profile.
Because of my theory, I have had a lifelong fear of cancer, specifically blood cancers. Bone marrow transplants ranked right up there on the fear factor with serial killers. I stayed out of the sun. I didn’t smoke. I ate healthy, locally grown foods. I exercised. I refused to be a hematology/oncology nurse, because I did not want to mess with therapies that could cause blood disorders.
This idea has littered my life. One time, at the China Club, a young doctor tried to pick me up. He was doing a rotation in the same hospital in the Bronx I was. He was mixing chemotherapies on the 6th floor. He said I should visit.
I asked him what he had done wrong in med school to get that assignment, because clearly, whoever had sent him to Our Lady of Mercy to mix chemo was trying to kill him through mugging or blood cancer. Needless to say, I didn’t call or go to visit. He wasn’t my type anyway. It takes a special type of man to handle what I say.
Also due to this theory, I felt like I was living on borrowed time. There is an upside that I have lived my life how I have wanted. I’ve made mistakes, but I’ve faced them. I have no regrets. I don’t feel I’ve ever hurt anybody knowingly. I’ve tried to be a good person despite my weaknesses. People do not scare me, no matter whom you are or where you are from. I want to know about you. I feel safe striking up conversations. There are exceptions to the rule, but only on an individual level from my intuition regarding who the person is.
I thought I’d be prepared when the inevitable happened, but I still freaked out when I felt the first tumor. I’ve lived trying to be good with God, but I am weak. I’m flawed and human. I just hope I am in the best position I can be in.

X and I- spending quality time