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Along with the email updates I was sending to a "public" audience, I kept a journal. The journal had been my private pplace to record moments, thoughts, and feelings. I am making those private entries public now as I share them on this webspace. I do so in the hope that it can de-mystify the boogey man that is cancer and offer a human, and hopefully humerous side to the story. |
Excerpts from my journal 01/22/04 He mentions the possibility of a hysterectomy and I feel blood and thoughts leave my head simultaneously. It is Monday and he is talking about an outpatient surgical procedure on Thursday! I begin to babble, I start talking about how this won’t fit into my schedule – I have ski trips planned and I’m busy at work, and then I see that incredulous look on his face, I am concerned with day-to-day crap and he is talking life or death. I realize I am being irrational and I try to focus and listen, but my heart is racing and my brain is somewhere else; how can I possibly process this? I agree to set the procedure for a week from Thursday. I need to get all my pre-admission testing done – I’ll do that before I go in to work tomorrow. I call Bill from the car and break the news to him that he’ll need to take off on the 29th to take me for outpatient surgery. Then I call Elayne. I start to cry and tell her I feel like this is the tip of the iceberg, as it turns out – my instincts are right-on. 01/29/04 I arrive at the hospital at 11:30; the surgery is scheduled for 1:00. I don’t remember much about the actual procedure at all, I am out cold almost immediately. The next thing I can remember is being in recovery and complaining of the cramps; they give me Motrin through my IV. I am trying to come out of my groggy state by attempting to focus and read the monitor over my head. Colorful zig-zag lines and flashing numbers fill the monitor. It reminds me of visiting my dad in the hospital during the weeks before he died. I try to recall what the normal ranges were for each function – but it’s all a blur. Outside in the waiting area, Bill is told that they were unable to do the hysteroscopy because my uterus was too small for them to be able to scope inside. I come around pretty quickly and Bill carts me home. I spend the rest of the day sleeping off the remnants of the anesthesia; Bill takes the phone calls from well-wishing friends. 01/30/04 02/03/04 02/04/04 “C-Day” I am nervous; I am on pins and needles. My meeting is important, my program is the test bed for the webbased application process for the college and I am in a meeting with the IT people to figure it all out; I tell them I am expecting an important call. I try to focus, but it’s impossible. After what seems like an eternity, my phone rings. I grab my pad and a pen and hustle into the hallway. It's my doctor, his conversation starts with, “The news is not good”. He wants me to make an appointment with a GYN oncologist; he wants me to see him immediately. The lab results indicate either early endocervical or advanced endometrial adenocarcinoma. Oncologists, carcinoma – it can’t be, who is he talking to? Theses are words that are connected to cancer; they can’t be talking about me My doctor is saying they will need to do a radical hysterectomy and they will need to sample lymph nodes as well – laparoscopy is not longer an option – this must be a large abdominal incision. I need to get additional tests right away – chest x-ray, CT scan of abdomen and pelvis. He doesn’t say why, but I know why, they want to see if this big nothing has spread. He also mentions radiation as a possibility before surgery to shrink the tumor – WHAT TUMOR? The last I heard we were talking about some abnormal cells – cells seems so harmless, but a tumor? I am on auto-pilot, writing all this down – I have to take copious notes for the imaginary person he is saying all this to, because he can’t possibly mean this information for me. It feels like an out of body experience. I watch my hand writing these notes, but these words don’t connect to me. Just to be clear, I ask him if he is saying that I have cancer. He says, “Yes, you have invasive cancer”. So there it is; I heard it, CANCER. The dividing line - I have just crossed it. From BC (before cancer) to AD (after diagnosis). This is the defining moment - this is when everything changes, and my new normal begins to take shape and replaces normal as I always knew it. He tells me this is out of his league now and I need to work with an oncologist. I ask him how can all of this be possible. He is sympathetic, agreeing, he says he couldn’t believe they could have missed this. I walk back into my meeting. I had planned to remain composed. My plan didn’t work I remember that as soon as I started to speak I started my voice cracked and it was heard to breathe - hard o get words to come out, harder yet to even form the words. I knew I had to leave. I felt bad for everyone else – what were they supposed to do, how would I react if someone came back from the hallway and started acting like that. I went outside to walk back to my building. I remember what a beautiful sunny day it was, it reminded me of September 11th which was also a flawless day, until the bottom fell out. When I got to my office to get my things one of my faculty was there waiting to speak with me about a problem she had. I didn't let on about my problem. I listen to her calmly and solved her issue - I wish it could have been the same for me. Sitting at my desk I decided to stay rational and before I went home I started calling to set up those tests. I took the train home, in a daze. Bill was already home by the time I got there. That night we went to the ski club meeting, I had laready made a conscious decision to maintain as normal a path as I could could. I would hang tenaciously to normal. At he ski meeting I “out-ed” my new status to the stunned amazement of my friends. 02/05/04 From there I go to the other lab for my blood work, a CA-125 test. I haven’t eaten yet, I have a migraine and badly behaved children are going nuts in the waiting area – and then I think it’s not so bad, at least I don’t have cancer – but I DO! I am still not used to my new status. I also realize I have begun a rich history of being pricked, poked and prodded – buck up – this is just the beginning. 02/06/04 02/08/04 02/09/04 Option 2 is the radical hysterectomy that my original GYN was suggesting (and that much of the internet research pointed to). This procedure would involve a temporary catheter while things heal. I thank him and tell him I plan to seek a second opinion – he offers to help set that up. Even though Bill and I were listening to the same options, we came away with very different interpretations. Bill was all excited that I didn’t need surgery, and I was convinced that surgery was the only reasonable option. From there Bill went back to work and I went to pick up my films, slides and scans. In doing so, I ran into my GYN doctors. When I told them about the options offered, them seemed aghast that radiation and chemo were being offered as an equal alternative. They said the cure rate may be the same, but quality of life issues were not. He was not very positive in describing long term effects of radiation. Once again my doctor tells me how shocked he is that this has happened to me and how unexpected it was. When I pick up my slides from the hospital where I had my biopsy done, I find out the initial diagnosis confusion of cervical vs. endometrial may be due to cross contamination of the specimens in the operating room.. When I got home I had another weepy episode. Workers were re-doing the siding on the house, and I came home to find they had covered my azaleas and rhododendrons with debris, decimating them. Cancer didn’t make me cry, but destroying my plants brought me to tears. 02/10/04 02/11/04 I know now that cancer will take me down roads that only a select group will travel. It will bring me both joy and sorrow. I will lose body physical parts of me, but I will gain friendships and a deeper understanding of many things. I will be challenged, and growth can only come from challenge – so I will be thankful for the opportunity to grow. Friends are reaching out, there is so much positive energy it is palpable. Cancer is also like a giant filter. Sometimes your life gets so busy instead of forgetting about petty things, you focus on them. Cancer tosses all that in the air and separates the grain from the chaff – only important things matter when you have cancer. 02/16/04 03/03/04 What if this is really a more advanced cancer? What if this has spread? I am frustrated and scared. I need information – I need this to go away. I want this thing out of me. According to the reports, my “infantile” uterus is only 5 X 5 X 3 cm. They are saying the tumor is 2.2 X 3 cm – this sucker has consumed half of what I have! I wonder if it looks like how I visualized it in my dream? 03/05/04 Then I get to lie on the table like having an MRI – only this is longer and slower. And to ensure I do not move, or decide to scratch an itch, my arms are secured with Velcro straps down along my sides. Of course, when you don’t have the ability to scratch – everything itches. Just when I start to daydream and doze off – the bed of the machine advances me a few inches – about every 7 minutes to be precise. The whole time in the machine takes about an hour. The test confirms a clearly defined cervical cancer with uptake in the uterus – they seem to be tap dancing around that little tid-bit – no one is giving me a good story on that yet. 03/29/04 Treatment begins The chemo drug will consist primarily of the heavy metal platinum. I always preferred platinum – well now I’ll get plenty of it, up close and personal! Last night I also found out about Steve. Steve was my former housemate. He rented a room from me as a friend for over 10 years. He was living back in Boston now and on the eve of the start of my cancer treatment I hear from him and he is in the hospital with colon cancer that has spread to his liver. They are giving him 3-6 months to live. How did this happen? Was it because he didn’t have any more insurance after losing his job in NJ? Was it because of his unhealthy diet? Because he smoked? Or was it just because? This disease is so unfair. I ask myself questions like that – what I did to get myself in this situation. But here I am, almost 2 months after being diagnosed, almost 4 months after the bad PAP; I sit waiting for treatment. Bill wasn’t sure it was a good idea for me to hear about Steve – but I am adamant about wanting to know the truth, even when it’s not pleasant. What I don’t want is the well meaning but very misguided comments offered by one friend, “well you know when your time is up, your time is up and there’s nothing you can do about it”, EGADS! So today is the first of 5 Mondays from hell. Now I get to see what all the hub-bub is about. It’s almost like the anticipation of the first day of kindergarten – excitement and apprehension. – it was hard to fall asleep last night. Bill takes me to the hospital at 7:30. I go right to the chemo area and sign in. I assure Bill it’s OK to leave – this is mostly going to be about sitting and waiting – no need for both of us to be bored to tears, and I have to be here; he doesn't - he leaves. They don’t call my name until 8:30. I go in and they draw a tube of blood. I am told that it will be another 45 minutes to an hour before they call me again; the lab work has to be done before you can go in the queue for a seat in the infusion room. As I am leaving I am called back – apparently they need to take a second vial because my creatinine and BUN levels have to be checked because I will be on Cisplatin. – now I need to get poked a second time. I find out I can get a beeper and they will page me when they are ready. Since I am now mobile I leave the infusion room waiting area and chose to sit in a more comfortable waiting area – one with couches and nice upholstered chairs. I get excited when my beeper goes off only a half hour later. Turns out all they want is my height and weight, then it’s back to more waiting. I am wearing my “Be the person your dog thinks you are” t-shirt, it has been carefully selected as the appropriate attire for this event. In another half hour I graduate to the infusion room. There are 20 stations and everyone is in different states of disrepair. I am gifted with booklets and a folder. My nurse du-jour takes time to explain everything and answers all my annoying questions with the patience of person who doesn’t show that she has answered these a hundred times over. I get a chart to track my cell counts each week, and if I drop below a certain level – well then no chemo for me – it’s like the soup Nazi on the Seinfeld show. When the IV goes in my right hand it feels cool. I have a pillow and blanket, I need it, my arm feels cold. The first half hour I get saline – to prevent the wear and tear on my kidneys; followed by about 15 minutes of a combo of Zofran and Decadron. Now its show time – let the poison drip begin. I have looked Cisplatin up on a chemo website. It is a metal salt, in the same family as mustard gas. I am anticipating something, but I don’t know what. Perhaps I am waiting for a transformation like the movie, The Fly. I don’t see or feel any immediate reaction – that just intensifies the anticipation. I read the paper, browse my magazines. I curl up and try to doze. I get lots of instruction on the special things I need to do to protect my immune system which will be compromised. No crowds, avoiding certain foods, can't be near anyone who was recently vaccinated, no caffeine, no sushi, need to get a very soft toothbrush so I don't irritate my gums. I guess I need to abandon my “2-minute rule” if a chip falls on the floor until this ordeal is over. Once I’ve finished up all my poison, I get another hour of saline for dessert – yum! When that’s all done I get to give up my chair to someone else in the waiting room. I snag lunch in the bistro here and head down to radiation. I also set the schedule to my MRI’s done on Mondays as part of my long day. I call Bill and ask him to come get me; he picks me up at 3:30 – all in all a smooth first day. 03/30/04 03/31/04 I am getting lots of cards, well wishes, flowers, plants – it’s all so overwhelming, I am so touched that people have this level of concern. It really does boost my spirits to know I have support in this battle. 04/01/04 My rosy glow is back and my eyes are red and itchy – feels like after a long day on the beach – but no nausea. 04/05/04 All the distractions of the whirlwind weekend in DC almost made me forget I had cancer. But here I am in the infusion room and reality is back in my face. I bring my “busy bag” with grapes and saltines, books, crossword puzzles, magazines and my CD player with headset. I crank the sound on my CD player to drown the white noises of other conversations and nurses chatter. I do puzzles and read. When I finish the chemo part of my day I get a yogurt from the bistro, then down to my radiation appointment. No big surprise that they put the radiation department in the basement. The waiting area is filled with people in hospital gowns and family members who are waiting with them. I sit alone, I have given Bill permission not to deal with this and he takes me up on the offer. Those of us being radiated are easy to spot, our hospital gowns and bracelets separate us from them – that, and cancer. 04/06/04 By the time I get home today I am wiped. I throw on some comfy clothes, pull the fleece throw over me and nap. The TV is on – but who cares. Bill comes home, makes dinner – I get something to eat and go back to bed. My head is pounding. Tuesdays really are the challenge. 04/07/04 04/09/04 At home I think maybe eating will help. I heat up some leftover mashed potatoes. Next comes the big mistake. Bill heats up a leftover crab cake and we split it. Not long after that all hell breaks loose. I get diarrhea and cramps like never before. Once it started I never made it far from the toilet. I was in pain the entire time. Eventually I took Immodium – to no avail. It seemed as if I were shedding the entire lining of my intestines. Eventually all that was coming out was a watery blood that burned the whole way. It finally subsided around 4 am I managed to lie in a fetal position on the bathroom floor. I couldn't make it up from there so there I stayed. Bill, less than 10 feet from the bathroom door slept through it all and found me there on the floor when he got up the next morning. 04/10/04 04/11/04 04/12/04 04/13/04 Before cancer I had been doing Atkins for some time – now I was on a primarily carb based comfort food diet: bananas, farina, baked potato without the skin. Beverages were now powerade and cranberry juice and combinations of the two. 04/14/04 I also talk to Dr. Anderson’s nurse (radiation oncologist) about scheduling Phase 2. My sleeve insertion procedure is scheduled, and we also figure out a Tuesday and Friday schedule for the five upcoming sessions of Phase 2. On my own I decide to drop in on the pre-admission people and find out I can use the chest X-ray from when I was originally being diagnosed – so one less procedure to deal with. I still have to do blood work and get an EKG. I also go on a “tour” of the actual room where I’ll receive the internal radiation treatments. It’s a pretty small room – it could almost be mistaken for a supply closet, but there’s a gurney and a lead encased robotic device that set it apart. They will be watching me on monitors, safely from the other side of the hugely thick lead door, as radioactive pellets travel through a cable to my cervix and the contraptions they have put inside me. The actual treatments will last about 6 minutes. I am told I will have a mild sedative when they install the hardware inside me. I can’t even begin to visual how so much “stuff” is actually going to fit (this seems like it will be the clowns in the Volkswagen scenario carried to the “N-th” degree”. I am assured that when the pieces are assembled properly they fit like pieces of a puzzle and compact to smaller than what I am seeing now – GOD – let’s hope so! There’s a boom box and I am told I can bring in CDs if I want – I’m not so sure I want to irradiate my Lyle Lovett tunes. Turns out the decision to stay home was a good one. Tonight diarrhea struck again with a vengeance. I literally clawed my way across the bathroom to the Immodium. I have a few more attacks before the Immodium takes hold. I am fearful about drifting off to sleep – what if I don’t get up in time – and yet I am so depleted and exhausted. This is so unfair – but I guess it’s unreasonable for me to think that cancer could ever be fair. 04/17/04 04/18/04 I come home and feel up to a bit of gardening. I am feeling rather perky so I decide to grill a burger. No sooner do I get done eating and the diarrhea hits again – all of a sudden I have gone from 60 to zero. This bathroom thing is really wearing thin on me, it’s become part of my life and it’s disturbing. I wonder if it will always be like this from now on. It’s too overwhelming to believe that will be the case so I focus on the positives – first kill the cancer, then worry about the rest of this. 04/19/04 04/22/04 04/23/04 04/24/04 04/26/04 I remind the nurse that my hearing is an issue and that I have not heard back from my chemo doctor. She calls him and half way through my saline she comes back and informs me they are stopping chemo. Today? Will I have to come back next week instead? No, this is it – no more chemo. They don’t want to risk additional hearing loss – they feel the benefit of this last chemo treatment is not balanced by the risk, and ultimately less harm will be done if they do not give me this round of chemo. I go get my radiation – still a bit bewildered, with my heart-warming quilt on my arm. I am done at 10:30 so I call Bill to leave work and pick me up instead of waiting for Kris at the end of the day. I get all the way home before I remember that I had an MRI scheduled that I didn’t go to. 04/28/04 I wake up with intense cramps. They inject the IV several times with “Tordal?” but it doesn’t seem to do anything. I keep trying to focus on the clock to see what time it is. Finally I come around and I get wheeled to a second recovery room where Mary joins me. I have intense cramps and it really hurts to pee. Mary carts me home and stays a while until I fall asleep. 04/29/04 04/30/04 05/03/04 05/04/04 When she is done I lay there with the affected area just throbbing, it’s a pain that can only be released in tears. And they haven’t even installed the “erector set” yet! This is the worst day on cancer treatment so far. The look in the catheter bag and tell me there are bits of tissue and blood – I am peeing tissue and blood – how good can that be! It almost feels like the pain medication hasn’t taken effect – I just tell myself how bad it would be if I didn’t have the meds and somehow I get through it – because that’s your only choice – you HAVE to get through it. I get wheeled in for a CT scan. They recruit teams to take turns lifting me from one place to another – the rods of equipment in me make me an unbendable shish–kebob of sorts so I can’t really “scoot” myself into positions or assist in moving myself. They also don’t want to dislodge the carefully placed components. A flurry of people are introducing themselves to me. They adjust things, align things, and it’s all a hazy blur – I can definitely tell now that the drugs have taken effect. I remember that a guy named Shawn is introducing himself as a physicist. His is leaning over me and adjusting installments under my sheet. I look up and ask him if that’s a Nature Conservancy tie he is wearing. First he can’t understand my slurred speech, he just thinks it’s the drugs talking. I try to explain that this is a brand of ties I like. He looks at the label on the underside of the tie – sure enough there’s the Nature Conservancy logo – all of a sudden the dumb drugged blond blonde with cancer has credibility. Shawn tells me they need to do some calculations and then I will be ready for the actual treatment. They wheel me into a waiting area where Bill joins me as I drift in and out of consciousness. This waiting area is apparently a pass through to another area and I amuse myself by watching the parade of hospital staff come & go. Finally they come for me and I get to go the lead lined room I had toured previously. Shawn hooks up my cables, explains the process and I watch the door slowly and mechanically close. I hear them talking to me on the monitor. I see the red light on the wall go on and I know it’s Showtime! I hear whirrs and clicks, but it is mostly anticlimactic. After, Dr. Anderson and the nurse come is and disassemble and remove the internal erector set. I can’t believe it hurts as much coming out as it went going in. I get dressed and Bill carts me to the back seat of my car. With no memory of the ride, I am home. 05/06/04 05/07/04 05/11/04 05/18/04 09/24/04 The terms urgency and bathroom have become inseparable. I have bathroom radar now and can immediately locate the nearest bathroom wherever I go. I can feel things pulling and tugging inside me as my melted down insides start to grown new layers and linings. I also seem to have had to give up the right to be entitled to my full range of emotions and feeling. I am not allowed to have a bad day or else well meaning friends remind me that I should just be grateful to be alive. Apparently if you survive cancer you can’t piss and moan about a bad hair day or weight issues – how dare I be so petty – you should be grateful – I hear it over and over again and it makes me very sad and empty. What I fought so hard for – wanting to be normal – I am no longer entitled to. When you have cancer, apparently you have to sign away your right to normal emotions and feelings. 10/15/04 I am having a host of digestive and intestinal problems and I am referred to Gastrointestinal specialist. 10/20/04 NOTE: I stopped writing in my journal for a while at this point – don’t really remember why. As it turns out, part of the GI problems were a small ulcer that apparently healed with a regimen of Nexium and a round of antibiotics which quelled a bacterial overgrowth in my intestines. Seems that part of my small intestines may have gotten caught in the radiation field, which would have explained the severity of my diarrhea attacks. It takes a few months, but slowly my system calms down. 11/15/05 I joke about whether or not I should even think about buying new shoes – but there’s an element of truth in it all. I think only someone who has been through this can really understand the emotion of this kind of uncertainty. I hear back and I am told that on a scale of 1 to 10 this is a 1.5 – so, another “Big Nothing”? I am scheduled for a colposcopy and a redo of the PAP in January. Here we go again. So am I a worry wart or am I really screwed? Time will tell. Ultimately I have my January appointment. It is cellular changes consistent with radiation. I am coming to find out that there are a lot of similarities between what radiation does to tissue and what cancer does. Stay tuned, I hope I have nothing to report – I hope this is the last entry. |