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As I was going through the procedures leading up to my cancer diagnosis, I was communicating with friends sporadically by phone and email. Once I received the diagnosis of cancer, I began a systematic email update, sharing my progress in the most open and honest way possible. I did it partly as a catharsis, partly to document my experience and and partly to keep my friends uniformly informed. I had no idea when I began this endeavor of the positive effect it would have on me, or how it would affect the people who received and shared these emails. I have done some selective editing to protect the privacy of some individuals. I hope you find the emails of some value. Please keep in mind these are solely my personal experiences and expressions. One cancer does not fit all - I am not a medically trained professional and I offer no medical advice explicit or implied, other than to take responsibility for your personal health and have all regular check-ups and tests - it could make all the difference in the world. |
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02/05/04 - Breaking the news 02/05/04 I found out I have cancer. They are still not completely sure how far along it is and the exact type/s. One result is saying early stage cervical -another is saying more advanced stage endometrial cancer. Today I go for a CT scan and chest X-ray - checking to see if anything grew anywhere else. Not the result I was expecting. I am supposed to meet w/ a GYN oncologist next week. They are saying they will probably do a radical hysterectomy in about 6 weeks - after the most recent procedure heals. Don't really understand why it needs to heal when it's coming out anyway. The up in the air issues are whether they will also take out lymph nodes and if they think radiation is in order. I'll know more after I meet w/ the oncologist and I am gathering info on experts for a second opinion. I’ll keep you posted & keep sending positive vibes in my direction. 02/09/04 written to a relative who was a breast cancer survivor I did internet research (and looked at the sites you recommended – thank you). The top cancer hospital in my area is Fox Chase Cancer Center. I did research on their top GYN oncologists and just got off the phone initiating the steps to get an appointment. I need to get all my reports faxed to them and pick up my sides and films – so that is my next step. They’ll call me to schedule the appointment based on the review of my data. It really helps me to be able to communicate with someone who has been through this. I started a journal for a variety of reasons. Writing helps me to release – it also helps me to remember information and a chronology of what happened when (since I am a bit distracted these days). I was wondering why they sent me for a CA125 blood test since that only really tests for ovarian cancer - and a friend who is a physician assistant said they may be looking to see if that was the primary site – so many unknowns at this point. I have started with a folder – but I know a bigger and more organized book will be needed. I also am writing all my questions and saving them as a word document. I treat every event in my life as a documentary and this will be no different. The Fox Chase people are saying they want to see the actual films and slides rather than just the reports so I am now arranging to get those – it’s like I’ll be carrying my story around with me everywhere I go – the “cancer travel pack”. I will always be looking for the humor in this – that’s also my nature. Keep in touch – questions are welcome 02/12/04 The GYN I saw thinks it's stage 1b cervical cancer. He said I could choose between radiation & chemo for a couple of months or surgery - and that they were equal choices and personal preference would dictate which way to go. All my internet research and my friend who is a PA said surgery is the way to go. Tuesday I started the binder. I have dividers and copies of everything - pathology reports, notes, articles - I felt 100% better when I put that together. In a weird way it made me feel like I was in control of my cancer for the first time; I was "managing" it. One of the women in my office said cancer doesn’t stand a chance against my notebook. The pathology report from the hospital still says there is evidence of primary endometrial cancer - but says it doesn't really add up and they are thinking the most likely explanation was a contamination of the specimen in surgery. Fox Chase had me retrieve all the original slides and films and when I meet with them they will have their own pathologists review the material. I feel better about that. The reports so far are saying it has not spread so that's very positive. So that's where I am today. Thanks for asking and thanks for traveling with me on this journey. 02/13/04 Bill said he is not sure what he's supposed to do at times - I told him to just "be there". I told him I have no idea how I’ll behaving in the near future and while I don't expect him to tolerate bad behavior if I end up lashing out at times, but also understand I may have my moments and don't dwell on it when I do - cut me slack to be a little nuts at times. He asks me which events visits are ones I would prefer him to go on with me. I told him I want to try to live as normal a life as we can until we are over this hurdle. He is also a bit stunned and says he is amazed at how well I am handling this and how I seem so normal. Let's see what he has to say when I am groaning and puking - the not so normal days will be there for sure. I'll keep you posted. 02/26/04 Today was my long awaited appointment for an evaluation at Fox Chase Cancer Center. I met with Dr. Cynthia Bergman – one of their chief Gyn oncologists. She has sent me for an MRI (which is scheduled for Monday); they are trying to define the primary cancer. We are still at odds to be sure if it is cervical cancer that spread to the endometrium (uterus) or endometrial cancer that spread to the cervix. Why do we need to know? Because the two different cancers behave differently, spread differently, and there are variations in the treatment. She said we may never know for sure, but the MRI has better definition and could detail the tumor growth better. Treatment – recommended course at this point is to treat the cancer in both areas in a catch all approach, unless the MRI directs us otherwise. For now they are saying 5 weeks of external beam radiation – like an x-ray – once a day, M-F approx 25 treatments. This will be coupled with a low dose chemotherapy regimen once a week. Supposedly I can work and lead a somewhat normal life during that time - with the expectation of fatigue and some other discomforts as the treatment progresses. I am currently trying to get an appointment with a radiation oncologist to partner with Dr. Bergman in this part of the plan. As of today, Dr. Penny Anderson – a radiation oncologist at Fox Chase is not avail to consult with me until April and I can’t imagine waiting that long to get started – so we’ll see what happens with that. After radiation I get to heal and rest up for 6 weeks to let everything calm down. Then I will probably have surgery – a standard hysterectomy. They don’t remove as much surrounding tissue as a radical hysterectomy, but they still take out the uterus and ovaries. Because they need to check lymph nodes it can’t be done laparoscopically. After 3-4 days in the hospital I will be able to return to work in another 2-3 weeks Dr. Bergman feels the ovaries are not involved in the cancer which is good news. If you do the math – this plan involves about 14 weeks (3½ months) so I am anxious to get it started. Hell – I have hills to hike in Alaska in August and this cancer crap isn’t gonna screw that up! I guess the next benchmark is after I finally meet with the radiation oncologist. So thanks for all the support, well wishes, advice, and everything else you’ve contributed. I appreciate every bit of it!!!!!! 03/06/04 I had an MRI on 3/1 to provide a more defined view of what was going on and hopefully clarify my type of cancer. Mission accomplished! Although the folks at the imaging center misread the films and had me believing (for a couple of days) that I was worse off than I thought – the radiologists at Fox Chase, who read films for cancer patients all the time feel confident that what I have is stage 1 b2 cervical cancer. Apparently the tumor is high up in the cervix, an area not usually swabbed in a pap smear – which is why it was not detected in earlier tests. It is just before the junction to the uterus which is why it was so hard to figure out which it was. My GYN oncologist said that makes all the pieces to the puzzle make the most amount of sense. With this info my treatment plan was modified. I managed to grovel and cajole my way into an appointment with the radiation oncologist for this past Friday instead of the original April available slot. I saw the radiation oncologist at Fox Chase on 3/5, a great lady, Dr. Penny Anderson. She wants me to get a PET scan, a full body scan to show any “hot spots” or inflammation, another way to see if bits of the tumor escaped to anywhere. We are in the process now of seeing if my insurance will cover this $5,000 test. The new treatment plan is still calling for external beam radiation for 25 treatments over 5 weeks, and chemo for 5 treatments over 5 weeks – but the difference is that they are not going to do surgery – but they will add 5 sessions of high dose internal radiation at the end of the 5 weeks – called brachytherapy. That will be done by a special technique developed by the Fox Chase team. The more common way of handling this is a low dose internal treatment for two days at a time in a hospital in isolation – this new treatment is out patient and the doses are 6 min. each. I always liked being a trailblazer. Apparently they prefer to do either surgery OR radiation/chemo, not both, whenever possible. For the type of cancer I have, and its position, radiation and chemo are the preferred route. If the tumor was smaller and less invasive, and they could be sure of it being contained, surgery would have been an option. Apparently they both carry their separate risks and morbidity (morbidity - this is a scary word), so they prefer not to compound the treatment if they can zero in on what type of cancer and exactly where it is – the MRI let them do that. I don’t know the chemo details yet – I am in the process of wrangling to get an appointment with the medical oncologist. The chemo is designed to kill the cancer and make the cancer cells more receptive to receiving the radiation. These visits have to be synchronized with the radiation plan. Next Friday, 3/12 I have my “set up” appointment w/ the radiation team. They’ll make a cast of my lower body so that I can be in the exact same position for each of the 25 treatments. Then you get 4 black dot tattoos as register marks. They will also do CT scan to get everything lined up. The physicists and radiation experts then plan how and where the beams will be administered to focus their effect on the tumor and avoid as much of my other tissue as possible. Even with all this precision, treating cancer with radiation has been described as being as precise as using a baseball bat! I am told to expect fatigue, diarrhea, skin irritation and possible bladder irritations. The chemo people can clue me in on what to expect from that round of treatment – but I know nausea and at least some hair loss is ahead. I have to sign a host of legal forms agreeing to treatment; acknowledging that if I do not treat this disease I will succumb to it – YIKES! So I guess the next update will be when I find out about the chemo part. The plan can’t fully begin until then. After the radiation set up appointment they will be ready to go within 7-10 days; that’s how long it takes to figure it all out from the set up phase. Again, your kind words and thoughts – both spoken and unspoken – have been a tremendous source of comfort and strength. I am fortunate and blessed to have such a support group. It really is difficult to express how much it means to me. Humbly, I thank you. 03/27/04 To fill you in on the “high points” - on 3/15 I had a PET scan, and it turns out if you show up without a pet, they scan you instead. An injection of glucose and a radioactive isotope will spread through your body and when scanned will reveal metabolic changes that differentiate cancer cells from normal cells. Apparently cancer cells have a chaotic reproductive and metabolic process which allows this test to detect cancer activity before it ever becomes a tumor. It’s weird test – they seal the syringe in a sizeable metal canister, unscrew it to inject the radioactive stuff into your IV – spooky!. Then you have to lie still for an hour in an MRI type machine with your arms strapped around you so you can’t move. Not a good time to get an itch! The test is a valuable diagnostic tool for cancer patients. Good news is the rest of my “real estate” is clear, but something about “uptake in the uterus” which is yet unexplained (my doctor is on vacation, will return on Monday when I begin my treatment, and will look at the films and explain.) Monday will be hell day – Bill will drop me off at Fox Chase Cancer Center at 7:30 am. I start with my blood tests – they need a baseline to monitor all kinds of things. At 8:30 I have my weekly chemo appointment. The drug they are giving me is Cisplatin, it is one of the older drugs, a heavy metal, with a host of side effects. Supposedly I am not getting a full dose – which will reduce the side effects. The chemo treatment will run 4-5 hours once they start. I don’t necessarily begin at 8:30 – there is a big waiting room but only 20 chairs in the infusion room, so basically you get on the list and wait for a coveted chair. The reason my chemo regimen is 4-5 hours is that they have to run a lot of fluid in me, both before and after administering the actual drugs because they are highly toxic to your kidneys; they have to keep you super- hydrated. Jeez.. I’ll be rolling that IV stand to the ladies room every 5 minutes! They also run anti-nausea drugs through the line as well. After chemo I get my daily radiation treatment. I also will get a weekly MRI, but we don’t know if that is a Monday or another day yet. So after putting in a full day, Bill will come fetch me. In a perfect world, I will go to work on Tuesday-Friday and leave work by 2:00 to get back to Fox Chase for my daily radiation – I snag the last appointment of the day so I can put in as much time at work as possible – then I’ll go home and crash. Depending on how I feel of course. My computer has been configured to allow me to access the network from home – so I could work at home when I have to. I want to try to maintain as normal a routine as I am able through treatment – being at work around others helps me to do that. Side effects are primarily fatigue, possible nausea, later in the process diarrhea, some hair loss and kidney issues. Numbness and tingling and hearing loss are also possible chemo side effects. The treatment is planned for 5 weeks which means 25 radiation treatments and 5 chemo treatments – of course they will evaluate as I go. When the 5 weeks are up they will do 5 concentrated high dose internal radiation treatments targeted directly to the cervix. I am anxious to get started, anxious to see what I will actually feel like. I understand the effects are somewhat cumulative, so I may feel OK at the start and worse as I go along – although some people are fine – so maybe I’ll be lucky and be one of them! Thanks to everyone for sticking with me, listening to me (which is one of the most valuable things !) and all your generous offers of support. I plan to take people up on their offers when the need arises and really appreciate every gesture. I’ll update you on my “Cancer Chronicles” at the next benchmark. 03/30/04 Yesterday I put in a full day at my “Fox Chase Office”. Bill dropped me off at 7:30 for my blood work appointment. They were already running behind at that point so I got in around 8:30 for that. Then I needed to wait another 45 min to an hour for the results to be processed. Apparently if your counts are too low they won’t give you the chemo until your levels are high enough (white cells and platelets) Good news is they give you a beeper, like some restaurants have. So you can wander about until your “chair” is ready. The infusion room has 20 stations, “chairs” which are recliners with a little hospital style TV, if you’re into daytime TV. Since this was my first day I got a lot of instruction and pamphlets – all the do’s and don’ts – apparently oral hygiene is a big issue. I was instructed to buy a new toothbrush – softest one I could find - and make sure I brushed frequently. The drug I am on – Cisplatin- kills the kind of cells that line your mouth as well as the cancer cells, and you have to be really protective against bacteria and infection. Also banned for the duration of treatment are: sushi, honey, un-pasteurized products, being in crowds, being around anyone who was recently ill or children who have recently been vaccinated. I also can’t clean up any pet messes, can’t eat sharp chips, can’t trim my cuticles, no contact sports and I need to restrict alcohol and caffeine; the list goes on. Settled into my chair they put an IV in the top of my hand. I get 1 hour of saline, followed by 15 minutes of Zofran (anti-nausea) and Decadron (anti-nausea, steroid and Zofran booster), followed by an hour of Cisplatin, and then another hour of saline. It feels a little cool going in your arm, but aside from that I didn’t know it was there most of the time. I read magazines, dozed, wrote in my journal and dragged the squeaky wheeled pole that held my IV set up to the bathroom with me a number of times. Doesn’t matter how the fluids go in – they come out as pee! After 3-4 hours of quality chemo time, its radiation time – that’s really quick unless they get behind schedule with the appointments. I was in and out of there in a flash (no pun intended). You don’t feel anything - it’s like an x-ray, except it will be like ground hog’s day - they’ll do it every day for 5 weeks. Next Monday my weekly MRI gets added on to my long day. They have me taking Zofran as soon as the IV dose wears off. The way that anti-nausea thing works is that it sends a signal to your brain to block the impulse to vomit or respond to the signal to be nauseous – and Cisplatin is one of the worst offenders to cause nausea. If they keep the level of medicine up for the first three days it supposedly gets you past the critical point. Last night I felt fine. Today, however, I woke up with a killer migraine. I took my Imitrex (migraine med) and Zofran and scooted off to work. The headache returned the second the Imitrex wore off. My face felt hot and itchy, when I looked in the mirror – it looked as if I had bad sunburn. I found out the Decadron causes the flush and I can expect it to last a couple of days after each treatment. I also found out the Zofran causes headaches. They gave me a prescription for Dexamethasone (Decadron – the stuff that causes the rash – but not headaches as an anti nausea alternative) – so now I am toggling between drugs - Decadron rash, Zofran headaches, or Compazine drowsiness - and deciding which effect I want the least or most to keep the nausea from coming on. So that’s how day one and the aftermath went. So many of you have written, called and sent your well wishes for my “kickoff” and I am truly overwhelmed. I am blessed to have you all as friends and my wish is that every person going through this could have the level of love and support that I do. It’s an incredible catalyst to the medication! 03/31/04 – written to a relative who was a breast cancer survivor - we share more inside details with each other. I figured out a plan for the meds that seems to work. I swapped around and took Compazine last night (the drowsy one) Dexamethasone this morning (the insomnia/rosy rash one - although no rash today so far) and this afternoon the Zofran (headache one ). Tonight I'll take the drowsy one again and that should do it until next Monday when we start again. This way I don't take enough of any one type to bring on the side effects when I rotate them, and the doctor said it was ok to mix and match as long as I don't exceed dosage. I am not supposed to have to take the anti-nausea on Thursday – they feel I’ll be past it by then – it’s gonna feel like going out without my training wheels on! I guess I’ll just have to convince myself I can ride on 2 wheels until Monday – and if I can’t I’m swallowing more pills! I feel pretty lucky about how everything’s been going so far. I kid around with the radiation technicians and it just makes everything much more pleasant. When I think of how the anti-nausea meds work - blocking the messages to the brain – I get this visual in my head of cancer cells yelling “Barf, Barf, Barf” at my brain, and my brain holding hands over it’s ears saying, “I can’t hear you, I can’t hear you”. So with this little scenario going on in my head I’m sitting there chuckling to myself and now they probably think I’m nuts on top of it all! 04/05/04 I am working out systems now – as my friends you know - 5 minutes on the job and I start organizing; cancer is no different. Turns out that a friend Kris who lives nearby has a work schedule that coincides with my Monday appointments, and best of all, she works not too far from Fox Chase. She was kind enough to offer a ride to and from my “fox Chase Office” and today it worked out great. I get to my Fox Chase Office at 7:30 am, same routine, blood work, 3½ hrs in the infusion room for chemo, then my weekly MRI and my radiation treatment. I was done just before 4:00. I am still feeling a bit like I am in my own version of the movie, “The Fly”. I’ve watched the clear drips go down the tube into my arm, I’ve laid motionless in my body cast while the radiation machine stops at the four stations around my body – a white noise high hum and the green bar on the monitor; evidence that the Photon beam emission has traveled through my body. And so I spend the next week anticipating changes – changes in taste, smell, a gurgle in my stomach, feeling not quite nauseous, but queasy and that odd feeling you can’t quite put your finger on – you’re OK but you just don’t feel 100% normal. I expect to run to the mirror to discover that I have been transformed into a giant fly – just like Jeff Goldblum in the movie. At least tomorrow when the Decadron sunburn comes I’ll be expecting it and the roulette of anti-nausea drugs I worked out seemed to do the trick last week, so if it works out next week I should patent the plan! This past weekend Bill and I were in Wash DC for a recognition event from his job. We took time to tour the city as well. We visited monuments with foot high inspirational messages etched in granite and marble – hard not to be stoked and inspired! We walked the tidal basin under the flowering cherry trees. It was magic and for a weekend I forgot I had cancer. That’s why Monday’s a good day to put in a long day at Fox Chase – you can come off a weekend (even if it’s one where you watched the weeds sprout in your yard) and be jazzed to battle once again against the evil deeds cancer. Hey cancer – Eat my dust! 04/06/04 I am also figuring out that Tuesdays are tougher than Mondays. That’s when the culmination of the drugs hit and I get migraines all day. I found out chicken still tastes good, but some things lost their taste or taste tinny. They say eat apricots (I forget why) – I bought a can, ate one and spit it out- didn’t taste the way I remembered it. But I have a healthy appetite and I don’t think weight will be a problem. In fact when this ordeal is over I plan to get back on a diet and lose what may be left of the 20 lbs I put on since last summer before this craziness started. It was going to be a New Year’s resolution – but of course I got sidetracked. I know I will be OK through this because I “had a conversation” with my dad and I asked him to look out for me (my dad passed away 2 years ago) 04/12/04 The short of it - the side effects are starting to register. For those of you who are wondering – as of today, I still have my hair – not sure what will happen there, and I haven’t thrown up yet…but I did hit a speed bump Friday night. I had been told that sometime in the second week to expect diarrhea (primarily due to the radiation). I had no idea what they really meant by that. Apparently in the realm of radiation, diarrhea is a euphemism for: shedding the entire lining of your lower intestinal tract while doubled over in pain chanting, “This is temporary”. What started about 10 pm ended sometime in a groggy haze, around 4 am, when I was in a fetal position on the bathroom floor thinking, “is it safe yet?” In hindsight I have been advised by my very sympathetic medical team is to start popping the Immodium if I even had inkling that I might get diarrhea. I made the mistake of waiting a while to take it because I couldn’t believe after the first hour or two that this could persist I spent Saturday and Easter Sunday dividing my time between sleeping, and being curled in a ball under a fleece blanket sipping peppermint tea, and sipping broth and eating jello (thanks for the jello run Elayne!). Do I know how to celebrate Easter or what! I feared going for my treatment today – thinking how much could the body take – but then I decided to “buck up” and if worse came to worse –I would be in a hospital and it would be up to them to get me off the floor. I am happy to report I actually had solid food today, and aside from the persistent headache that has plagued me since Friday – the chemo was no worse than last week and I have passed the ½ way point with the chemo treatments. I went to the Shop Rite tonight and my cart was barely recognizable: bananas, farina, jello (OK I went crazy and got the jello with fruit), powerade, and 100% cranberry juice from the organic aisle – because I can already feel the promised bladder irritation brewing. I understand why the juice was in the “organic” aisle; 100% cranberry juice is so freaking bitter, mainstream customers would never want to buy it. But I wanted the highest concentration of juice I could stand - so I cut it with cranberry juice cocktail to get it to a hybrid mix. I can’t believe I couldn’t pass chemistry in high school, I think I’m doing pretty well now at mixing my beverage and drug concoctions. I may cut myself some slack and work from home tomorrow – more because I can’t shake the headache than anything else and I already know I feel rather punk on Tuesdays. So thanks again for listening – sorry the focus was so much on potty talk. Hope you all had a great holiday – I’m looking forward to the nice weather and enjoy watching all the blooms start to peek out. 04/20/04 Here’s the latest, as of today I have 8 more external radiations and possibly one more chemo to go. I say possibly because I may be experiencing a serious side effect of the chemo. Last Wednesday I started noticing my car radio sounded really bad – no bass, all treble, sharp, static, with a weird sort of echo. I was real pissed because my car is relatively new. When I got to work I noticed my office had a similar acoustic when people spoke, and then I noticed my own voice took on a new quality – everything started to sound like a bad phone connection. Being blond, it didn’t click right away; it wasn’t them - it was me! A problematic side effect of my chemo drug is “ringing in the ears” or “loss of hearing in the high frequency range” – apparently something to that effect is happening – and the doctor is showing concern. This past week he reduced my chemo dosage from 72 mg to 46 mg and I need to report to him how I am doing on Thursday. The decision about what happens w/ my final chemo will be based on that conversation. This is a potentially permanent side effect so he needed to react quickly to it. I guess the good news is I still haven’t lost hair, and with the dosage being or reduced I hope my odds will stay good on that one – playing that game one day at a time. What has plagued me is the diarrhea and its unpredictable nature. I got hit with an attack on Friday, Saturday and Sunday. Luckily I took the Immodium immediately, but it took about an hour or so for the attacks to subside. So my days are spent calculating how close I’ll be to a bathroom should the need arise, and only run short errands! By the way – based on my experience and the number of people who must be going through a similar experience in cancer treatment centers around the country – buy stock in Immodium – it’s a sure thing! Bill was at his mom’s in Baltimore this weekend, so between “episodes of the runs” I did a little gardening and a lot of laying down with the TV on in the background. The sound is lousy anyway - oh wait – that’s right it’s me! In case you’re wondering what comes next – it’s Phase 2! Phase 2 consists of 5 internal radiation treatments that are high dose and delivered right to the cervix. How do they do that you might wonder – luckily I am here to give you the lowdown on the wonders of the universe. (If I had been an astronaut I would have been the one to explain to the little kids how astronauts went to the bathroom in space - because those were the things I really always wondered about – but no one dared explain them). On April 28 (next Wednesday) Bill drops me off at Fox Chase early in am. I am having a very brief outpatient surgical procedure to have a “sleeve” stitched in my cervix under general anesthesia. While I am out, my radiation oncologist will also take advantage of my state of unconsciousness to do a thorough exam to determine the status of the tumor. After I gain my wits about me in recovery – I will be scooted down to the radiation department and get my regularly scheduled external radiation and finally, good friend Mary carts me home. Next Tuesday they do a set up procedure to calculate the direction of the beam and dosage etc – with the physicists crunching the numbers. My part is to have every available piece of medical hardware they have in that room jammed up inside me to help with the process. Since this treatment is such a high dose of radiation, they want the target to be very specific and avoid hitting the bladder and bowel. To accomplish this, a catheter with a balloon goes into your bladder and plastic gizmos to shield the bowel go into the vagina – this is what they should give me general anesthesia for! Instead I get a light sedative and my choice of CD to listen to! After the set up routine and an hour or two to crunch numbers – the actual “treatment” is given. Treatment consists of blocking devices being inserted and a cable being guided into the sleeve that was stitched into the cervix – the other end of the cable goes to a lead lined robotic device nearby. When the team leaves the lead lined room – the robot delivers radioactive pellets through the cable to the sleeve in my cervix. After 6 minutes on warp speed – the pellets are then called back into the robot, and I get to wobble home. Don’t know my ride scenario for these appointments yet because I don’t have a time schedule yet. I do these 5 appointments tentatively on Tues & Fri, May 4, 7, 11, 14 & 18. The sleeve is then removed in a regular office visit. Here’s my advice for the day – for the females reading – go for annual Gyn checkups – get annual PAPs. I have been religious about that – never missed – and look what happened to me. Imagine what can happen if this goes undetected! Sorry this has been so long - but there was a lot to tell this time around! Thanks for the visits and calls. Chris and Janice – the chemo nurses fell in love w/ the Snoopy stuffed animal you sent. Kris – the Monday rides have been invaluable! You – my friends - are the ones who have given me the support that keeps me strong –through every gesture, and thought, spoken and unspoken, and I grin ear to ear and get teary eyed at the same time just thinking about it. Thank you. 04/26/04 Episodes continued on Friday, Saturday and Sunday. I got a brief reprieve on Saturday and took a big chance by taking a trip to Cape May with Bill. It felt great to leave the couch – but a little scary as well. God must really like me because I was able to get to Cape May and back and even do a little gardening before the episodes revisited. The accumulation of the chemo also left me taking the anti-nausea throughout the weekend. Nausea seems to be a persistent state at this point – but in defiance – I have yet to throw up and I have yet to lose hair – so there! That brings us to today… When it was my turn to go to the infusion room I was given a small handmade quilt made by volunteers from a quilters organization in Bucks County. Apparently they make a batch of quilts every month to donate to people going through chemo. Usually they give you a heated blanket because it can be chilly in the room and the arm with the IV always gets cold – so this was a homey replacement, and it let you know that others cared about you. I was touched and warmed (literally) by the gesture and will treasure my little blue & white quilt as a memento of the kindness of strangers and the positive energy that went into making the quilt. A fitting gift for my grand finale in the infusion room. My stay in the infusion room today was short. As I was receiving my saline drip, the nurse came and informed me that my chemo doctor had called and when he found out that my hearing was still impaired he decided to halt the chemo treatment. He felt I had had enough to accomplish the treatment goals and any more would only risk making the hearing side effect worse – so there I was – all dressed up and nowhere to go. Luckily the radiation crew wiggled me in to their schedule several hours early and I called Bill out of a meeting to come fetch me. It wasn’t until I got home that I realized I was supposed to have my weekly MRI today and I completely forgot! I called and after identifying myself as “S__t for brains” I was able to get them to squeeze me on the end of the schedule for when I showed up for radiation tomorrow. I have read about “Chemo brain” and I am convinced I am also suffering from that side effect! It seems as though the stress from juggling all this new and frankly, weird information, couple with the chemo effect is turning my brain to mush. I grapple for simple words – have some real issues with short term memory and generally can’t think straight or focus as well as before – but I am counting that among the temporary issues. So here I am with 4 radiations left until Phase 2. Wednesday is my sleeve implant, and next Tuesday begins the big 5 countdown. This will certainly be an adventure and I’m sure there will be humor to be found in this chapter as there is in all life events – stay tuned for details. The prognosis is that when Phase 2 is over I should be cancer free – yes, that’s right – cured- they specifically used that word and I made them repeat it several times. Follow up exams, MRIs and a PET scan to be repeated a couple months out should confirm the results. If for any reason any of the tumor remains, additional chemo and radiation is not an option. They gave me the big guns on the way in and cannot give me any more – so on the outside chance they needed to do more – that’s when they would consider surgery. Let’s all collectively visualize the last cancer cell exploding in space and healthy normal tissue cells blooming like a field of wildflowers – kind of like the No More Rain chant at Woodstock! So in the meantime I continue with my low fiber, low residue, bland, no seeds, no spicy, no greasy, no gassy, no extreme hot or cold no pungently smelly food diet. I dream of a big plate of fried calamari with hot pepper Ricardo sauce at Carrabba’s, when I am back to normal. Bill and I will take our traditional seats at the counter, amused by the frenzy of the cooking and I will make an out loud “ummy” noise with each morsel. That will be a memorable day! Thanks again for listening, checking in, sending the vibes and for being you! 05/05/04 On Wednesday, April 28 I had the sleeve sewn in, and I can say I had forgotten what the term cramps meant until that day! The good news is that the reports are that the tumor has been reduced in size significantly and the high dose blasts from Phase 2 should kick it’s ass into the yonder! I keep reminding myself of this when I am feeling particularly punk. I was told not to drive the following day since I had been under general anesthesia. Not that I’m much of a rule follower in general, but coupled with the cramping, it convinced me to work from home. On Friday I actually ventured out to a half day Professional Workshop in northeast Philadelphia. I got stuck on 95 in a traffic jam caused by a motorcycle accident. I sat in my parked car reading the newspaper until traffic moved again – happy I wasn’t the guy on the motorcycle and freaked out that if an “episode” cropped up I was not within access of a bathroom. Luckily I was not put to the test. I went straight from the seminar to my final daily radiation treatment, and then home to bed. My bed was as far as I got – I didn’t even have the energy to make a cup of tea – way to celebrate the end of 5 weeks of daily treatment. On Saturday I puttered a bit in the garden and basically hung out. Apparently while I was having the sleeve procedure done, something irritated my urinary tract. We thought it was an infection, but antibiotics were not effective. What I needed was a fire extinguisher to put out the flames that it felt like every time I had to pee – I would see stars and it would take 5-10 minutes to recover. On Monday, still in urinary discomfort – I put in my first full day of work in the past 5 weeks. And a full day it was. I went in at 7:30 and didn’t end up leaving til 6:45. I have so much to catch up on it’s hard to drag yourself away sometimes. Tuesday was the big day – Phase 2 began. I started by bringing in a couple boxes of pastries to thank the radiation team who took such good care of me through Phase 1. Bill had to drive me because I would have to take something to relax to be able to undergo the procedure – a huge sledge hammer over the head would have helped! So after an Ativan sedative, I got to twirl a fentanyl lollipop against my cheek to address the pain. Lets just say I went through 2 lollipops and I believe my fingernails are still imbedded in the ceiling of that room. Most of the problem was my perplexing urinary issue. They took a urine culture which today came back negative – but all they can figure at this point is that some sort of trauma must have happened when they catheterized me during the sleeve procedure. So I am taking theses blue pills for bladder pain and burning; they make you pee blue, so it’s kind of like an instant tidy bowl effect. They are taking the edge off, but I’ll be glad when this clears up. The good news about the lollipops is that when they finally kick in you don’t even care who’s lifting your gown any more. It’s weird – they were wheeling me everywhere – with teams lifting me from this gurney to that table and back again. I had so many medical devices being put in and taken out they should have just had an open house sign on my privates. And here I am doped up and drooling, and they all feel compelled to introduce themselves. I met everyone from Sean the physicist to Donna the special procedures nurse – hell – I probably met the head of food services too, but who’s counting! Well they got me all cabled up and the actual radiation part was uneventful in comparison – but of course by that time I was in just a plain stupid state, except it still hurt to pee. So after I was through the gauntlet of the GYN erector set, they released me to Bill, he assured me he didn’t hear me screaming from the waiting room – but I think he was just trying to make me feel good. I crawled into the back seat of my car – Bill drove, picked up prescriptions (I have no recollection of the ride at all) and then we were home. I slept until it was time to go to bed and then I went to bed again. The blue pills are starting to take the edge off the burning, and having blue pee is kind of a kick; makes me wish I were a guy so I could pee in a urinal and watch the reaction of the guy next to me! Well you can always count on me for potty talk these days. Oh and speaking of which (although I hate to think I might jinx it) I believe the “episodes” have subsided! I made it through the weekend without a problem, although I am always looking over my shoulder, wary of an ambush. Friday I go for the second of my 5 intense high dose internal radiations. I will keep my sanity by counting down to the finish – that and looking forward to my lollipops; they’re actually kind of cute, they have a big RX on the stick! Thanks for hanging with me through this, we’re in the homestretch for sure now! 05/15/04 At this point I have completed 4 out of my 5 internal radiation treatments. I still get my lollipops – which we have renamed lalla pops because they put you in lalla land. And we decided that if they give me the sedative to bring home with me and take an hour before I arrive, it kicks in by the time they need to “get to work” on me so that has helped as well. We always start with the basics – take my temperature, blood pressure, etc. and the how am I doing questions. Afterwards, Donna, my special procedures nurse says, “Good girl, you answered all the questions, now you get a lalla pop”. Then the fun part – laying on the gurney while the doctor installs the erector set inside me. While it is not the high point of my day, it is no where near the discomfort of the first time. Could I be getting used to this? Please say no! Actually the drugs help to relax me and space me out and the doctor and nurse are very kind and gentle as possible so we get the job done. They seem to be amazed at how I’ve adapted, it makes it all go more quickly for all of us. From there we continue to get teams to lift me from one stretcher to another. I can’t really sit up or change position because there are metal rods that are connected to the erector set that extend outside of me to attach to the cables for the radioactive pellets to make their 6 minute visit. Think of it like a shish kebab. So in this immobile position I go from the exam room where the “installation” is done to the SIM room where they x-ray the position of everything, to the hallway where I wait my turn to go in the lead lined room for the high dose radiation. You only hope that when you get an itch your arm is long enough to reach it without having to bend your body in any way. The whole process ends up being 2 hours. When I come home, no matter my best intentions, all I can do is sleep. I only have one more treatment on Tuesday, May 18. Then, the following Monday I have the sleeve removed in an office visit, I have a blood workup done to see where I am with all my levels and I have a follow up appointment with my medical oncologist (chemo doctor). Hopefully I’ll get a better idea of my hearing prognosis at that point. I think it’s improving somewhat but I still can’t differentiate sounds in situations where there are a lot of people or background noise, so I wear earplugs to go to stores and in noisy places. I have begun to return my diet to normal, although I haven’t added back salads or gassy foods yet. I have has a couple of cups of coffee over this past week and I also a glass of wine, things I haven’t had in a couple of months. My hunched over stature has become more upright, I had a bit of hair thinning which seems to have stopped and was never noticeable to anyone but me. So it is all good. I feel like I am returning to the land of the living and Bill says I am getting back to my old self, so there’s confirmation. I need to begin to exercise a bit to get my physical strength back, but that will come in time. Every positive vibe directed my way made a difference and I thank you all for seeing me through this!!!! In another 6-8 weeks they will run tests and do another PET scan which will determine if we kicked this cancer shit down to the last drop – I’m feeling good about the news on this! I am confident that the news that I share with you from here on will be positive. Give yourselves a collective pat on the back – we have done a powerful thing here – stay tuned for the grand finale! 05/24/04 Then I met with my chemo doctor. The hearing thing has improved ever so slightly, but since it is improving, albeit at the pace of a glacier, it is a good sign. He suggested waiting several months to see where I am and if it’s at a plateau, I can consult an audiologist. So unless I should require chemo at some future point (a recurrence that is broad based and not a focused spot – which is highly unlikely), we can check chemo off the list. His farewell comment was, “Please don’t take this the wrong way, but I hope I never see you again”. Then I had an appointment with my Gynecological oncologist/surgeon. She removed the “sleeve” that had been sewn into my cervix a month ago. They said it would feel like getting a pap smear , well maybe for some, but for me there was an audible ouch as 4 stitches were snipped and the plastic gizmo was removed. Where’s a lalla pop when you need one! But it’s out and another thing to cross off my list. I will see this doctor now every 3 months starting with late August to have an exam and repeat a pap. While I was there I ran into my radiation oncologist who reminded me that we will repeat the PET scan about 2 months out when everything has settled down to see if any cancer shows up. I see her the end of June as a routine follow up to the radiation treatment. So for now, this is closure. I know who I need to see, and when, and why. It will feel weird, not driving down Cottman Ave. in Philadelphia’s great northeast on a regular basis, and yet I will somehow get over it. I will not wait with baited breath for these tests because I know in my heart I have licked this, the tests to come will just confirm that. But as the days go forward I hear of others who now have this challenge thrust upon them and it send chills through me, it’s like a flashback. I trip back to that moment when I first heard the word cancer out loud in reference to me, and it will never feel the same again to find out that someone has cancer. In some ways it’s less scary than before because I know so much more now and I know how treatable this crazy disease is. But for at least a moment in time, it takes me to that place and I re-live that most bizarre of moments. With some first hand experience I can tell them that it will be OK and that the boogie man is not nearly as scary when dragged out in to light and confronted with good information, good treatment and most of all, good friends. So I guess for now this is the end to weekly updates. I will do my best to keep in touch and I always welcome news from you. Let me know what’s going on in your world – and I hope it is all good!!!! 11/01/04 A follow up PET scan at the end of September indicated some activity and a possible recurrence. I had a CT scan to further define those results and today I had my appointment with my radiation oncologist. Her verdict is that she is not seeing any current sign of cancer. The activity on the other scan was from radiation inflammation to the bowel which is something like irritable bowel syndrome. Totally unrelated (so she says) are upper GI issues, persistent indigestion and stomach pain – but I am seeing a GI specialist this Thursday to see what’s up with that. Since the upper abdomen was not part of the radiation field for the cancer treatment, the feeling is that this problem is independent of the cancer or it’s treatment. So while I have to cope with IBS, I don’t have to cope with cancer and I’ll keep my fingers crossed that it stays that way through to the magical 5th anniversary! Thanks you for your thoughts and prayers – once again…they worked!!! To Note: Fawn Vrazo wrote a series of articles for the Philadelphia Inquirer called "The Cancer Chronicles". It was not just chronicleing the stories of others, it also told of her battle with metastaic breast cancer. I reached out to Fawn and was subsequently interviewed by her in the installment that focused on cancer patients who worked at their normal jobs during treatment. Fawn and I communicated, sporadically after that until she succumbed to the disease on April 5, 2007. This is my entry into the guest book posted with her obituary April 12, 2007 I am a cancer survivor and Fawn included an interview with me in her "Chronicles". Although we only met by phone calls and emails, I considered her a friend - I was profoundly saddened by her death. Despite the prognosis, I somehow felt with her grace and gusto she could survive forever - and in my heart - she always will. I don't know if she realized how many lives she touched and empowered by writing about cancer so honestly. We have lost a very special person. I will dedicate my ride in the ACS Bike-A-Thon on July 15th to her honor. Fawn, I wish you peace.
From: Diane Kae I am a very fortunate cancer victor. After a routine annual GYN visit in November 03, an abnormal pap began what I call the "Big Nothing", early stage (1b2) cervical cancer. I had no symptoms whatsoever, so when I went for a colposcopy on Dec 30, as a follow up to the pap, my GYN said, "This is probably just a big nothing." By February 1, after a cone biopsy and D&C, I called my doctor for the lab results on my cell phone during a break in a meeting at work. There in a hallway I heard the words that seemed surreal, "I'm so sorry, you have invasive cancer." In a daze I had to go back in to the meeting room, gather my stuff and mumbled that I had to leave. By the time I reached the door I started to cry and remember whimpering, "I don't want to have cancer" in a repetitive chant, as if I could wish it away. As I said, I am a fortunate victor. Though early stage - the cancer was too advanced for surgery, they did not feel they could get clean margins, so I underwent daily radiation for 5 weeks and weekly chemo, followed by 5 intensive internal radiation treatments at the tumor site. I worked the entire time and was determined to lead as close to a normal Like you, I talked openly about it. I kept anyone who wanted to know informed through email updates that I sent at least weekly to my "cancer I also found out that another friend on the list has a sister who works in an oncology center in Mississippi - she had forwarded my emails and her sister shared them with some of her patients. I have become a walking billboard for the importance of regular GYN check-ups, and several friends have shared that they were influenced by my story to make appointments that were long overdue. I discovered that every person who tells their tale helps another, it's not always clear how or why, but it does. It helped me to read or hear from other cancer patients, it definitely helped me to read your articles. Follow up test have filled me with anticipation and side effects from treatment have created some "speed bumps" I had to get over, but a Sorry this was so long. Keep up the good work, you are not alone in this fight, you have the support of legions with prayers and positive vibes being beamed your way. Count me among them. Thank you. Fawn’s response to me: Would you mind if I called you for a story I’m working on about people (like Arlen Specter) who continue working through cancer treatment? Just send me a fone numb and best time. all the best to you, fawn 04/28/05 11/23/05 At any rate, keep your fingers crossed, here we go again! Even though they say don't worry, that's not even remotely possible! 03/01/06 I guess it always feels that way, always doubting, always wondering and everyday going about your life. You can't linger on thinking about it for long or it will hold you back. |