Archive for May, 2007

back to gu

If you’ve been reading this or have talked to me you know I’m doing far too well to honestly qualify for Long Term Disability pay. Sure, I could’ve lied and gotten “free” money from my insurance company and let work continue to pay a temp to sit in for me. And let’s face it, I don’t get bored. Yes, I’ve experienced boredom in my life, but I’ve got time filling/wasting skillz like you wouldn’t believe and that’s even without turning to the boob tube.

Therefore I went back to work today. It was surreal mostly because it was so normal. First of all, there was an enormous and fragrant bouquet on my desk made up of red roses, pink peonies and a little bit of purple flowers. I took a picture of them with my cell phone (and made it my background on the little screen), but the file isn’t big enough to post. Those flowers were an awesome welcome back gift. Thank you to all of you responsible for chipping in - you know who you are.

Then once I was able to log back into the computer system, which took until noon to get straightened out by IT, things fell into place and suddenly it was as though I never left. But the morning was a parade of ‘welcome backs’ and hugs, which was very nice. I’ve been working in the same place for so long that everyone there is like family to me and I feel very comfortable with them.

The day passed without incident; no catastrophes, no major work to do, just some of my marketing chores and one medium sized mailing.

Since it was still so nice outside and I didn’t feel like going to the gym I walked home. This is a long-standing habit of mine. I like to try different routes and vary things here and there - mostly I wander through Beacon Hill then cross the salt and pepper bridge and walk up Beacon all the way through Inman and Porter to Davis. Long ago gmap-pedometer helped me figure out that this is a 6 mile walk. It usually takes me just under 2 hours depending on my pace and I was pleased to see that this time was no different.

Memorial Day Weekend fun

All too often holiday weekends come and go with zero fanfare on my part, which is to say I don’t really celebrate them nor do I do anything out of the ordinary. Most of the time I figure, well, everyone is going away to “get away,” but that means it’ll be nice and calm and quiet in town. Not empty, just calmer. I loathe crowds, I even think I’m a little claustrophobic - a terrible affliction since I also LOVE roller coasters and rides of most kinds and amusement parks are like chaotic anthills. Yeesch.

This time I didn’t stay, but I didn’t necessarily go away.

Saturday I went down to the Esplanade for EarthFest, but only because Will Dailey was playing and I know him and I’m friends with a couple of his bandmates. It was a good show and I handled the crowds well enough. We didn’t stay long because we had a cookout to go to afterwards. A friend from work has a Memorial Day Weekend party every year and I didn’t want to miss it. That was fun, too.

Sunday we had a nice brunch and drove up to Haverhill. Suddenly I was dying to play some frisbee golf, so I found a nearby course and we drove over. We played 9 holes, but I didn’t have any of my disc golf discs on me which made the course quite difficult. Next time…. Then on a whim we went to the Topsfield Crafts Fair. Although I was psyched to find some adorable stained glass stars, the fair itself was pretty pitiful. I think I’m spoiled because I grew up with the Centennial Park Crafts Fair in Nashville and it’s like a sprawling outdoor mall full of local artisans. I swear it takes at least an hour to wander by all of the tents and that’s if you don’t linger. I love it. I mean, check this out if you don’t believe me: Centennial Crafts Fair
This one not only had far fewer tents of goods, but it cost $5 to get in! ??? Unheard of in Nashville.

Ok, I’m done Crafts Fair bashing/boasting.

On Monday, Memorial Day proper, Todd roller bladed and I rode his bike. We sort of explored the neighborhood, a nearby park and then rode towards Newburyport. It was a fantastic ride, lots of hills and gorgeous houses and some mansions. We passed this amazing house that was in the process of being eaten alive by ivy, which was hilarious to me; I just loved it. The weather was warm, but not too hot, just perfect. For once I felt like I took advantage of a holiday weekend and it was great.

When we got back we checked with gmap pedometer to see how far we rode and the result was 12 miles. Pretty good for a girl on chemo.

fifth chemo: fewer drugs

Chemo has so many side-effects, expected and unexpected, that it’s got to be a close to impossible task to predict how each person will react. Many women stop menstruating and I was one of them for a couple months. But then Friday, May 18th, I started again. Not having my period was the one side-effect I was looking forward to so it figures it would rear its head again. I rang my nurse, Jackie, and she said it was nothing to worry about. I was all nervous that somehow the spinning might have kicked started it; something about the bike seat. I mean, who knows?

On Monday, the 21st, I was to meet with my Oncologist again before my treatment and we discussed my monthly visitor’s return. Because there aren’t enough cases similar to mine to guide us he decided to take me off of Avastin. (Evidently one of Avastin’s side-effects is not allowing wounds to heal.) Like I said, I’m way out of my demographic here.

The one good thing about taking Avastin off the menu is that my chemo infusion is quicker. This time they got me in my chair by 10am and I was done by 1:30PM. And since Jackie was back, things were smooth as silk, as far as chemo infusions go. I went home and napped and had a chill evening.

I don’t want to work out at the gym with my drugbag (l’ll just refer to the home infusion of 5FU as the drugbag from now on for the sake of brevity) because the logistics of showering with it on are difficult enough at home. Plus, I’ve no interest in thrusting my problems on other gym-goers nor do I want to freak anyone out. But I’d like to remain active, so Tuesday I managed a walk to Central Square. That was a good 3 miles.

My exercise Wednesday consisted of a vast number of trips up and down four flights of stairs in the process of doing not only my usual clothing laundry, but laundering 3 comforters and a quilt at the laundromat down the street. No easy task, but it’s well worth the work when you climb into a fresh, clean smelling bed. Ahhhh….

Thursday was a scorcher and I spent most of the day reading and writing. Made it to the gym and did a 45 minute spin class. A couple of times I had to take it down a few notches when my heart rate rose too high and I started to feel nauseaus. I do think I am a seasoned enough spinner to know how to listen to my body and manage the ride and overall it was a good one. I was glad it was only 45 minutes.

And on Friday I mostly read. I’m very behind in the Harry Potter books and promised myself I’d finish the 5th book before the movie comes out next month. In fact, I gave myself till that day to finish it. I function better with deadlines, regardless of whether their arbitrarily self-imposed or otherwise. I was up till almost 3am reading, but I finished it.

spinning cat scans

On Monday, the 14th, I actually made it back to the gym. It had been exactly 3 months since my last spin class so I was a little nervous about how my body would handle it. Before I got sick I would regularly do the hour rides (at least) and quite often would do two classes in a row. Now I’m just happy if I can make it through 45 minutes, which I did. Over the past couple years my spin instructor, Jon, has become a good friend, so he knows about the cancer. He knew I wouldn’t be pushing myself too hard and therefore wouldn’t call me out for slacking in class. That was a relief.

I’d have gone again on Wednesday, the 16th, but I had a scheduled CAT scan. Priorities, you know? My friend Steve (”on bass”) drove me. I have to write here that Steve has been of enormous help to me throughout all of this. He drove me to the hospital when I needed to get the ultrasound in February and then again that Wednesday morning when I was examined by the gynecological surgeon. He checks in on me and always offers to help in any way possible. And this time he helped by driving me to BIDMC and giving me positive encouragement as I forced down the orange flavoured barium in the waiting room. Wouldn’t it be funny if I got a taste for it and started craving contrast drinks?

That day would’ve been alright because the CAT scan didn’t take long and didn’t require a lot from me, but there was a problem with my tiny little veins rolling around. The nurse tried an IV in my upper arm, but didn’t like the way it was looking. And I didn’t like the way it was feeling, which is to say it hurt like hell. She removed it and tried a vein in my hand, apologizing for the possible pain. Wouldn’t you know it, the hand barely hurt, but the gross bruise from where she poked my arm only *just* faded today. Lovely.

The other problem with this day came after we left the hospital. The plan was to go to lunch and I was really looking forward to it. Plus it was a gorgeous, sunny day. My tummy, however, had other plans - thank you contrast drink. So Steve had to leave me at home so I could go spend some quality time in my bathroom. Chemo and the attending tests are not pretty.

By Thursday I felt ok enough to try an hour ride at the gym and it was great. I was a cherry tomato head afterwards, but I was energized. I also had the good fortune to run into my friend Terri, who I hadn’t seen since before all of this. She kindly gave me a ride home that night and the next day we not only had brunch together at The Rosebud (they have good eggs benny and aren’t as rude when it’s not the weekend), but she drove me all the way to Haverhill. Terri’s another friend who has consistently offered assistance and time. I haven’t taken her up on all the offers, but I feel good knowing she’s there.

I know I’ve written many times here how lucky I am and I know how strange that can seem considering I’ve been diagnosed with cancer and am undergoing chemotherapy, but man, am I lucky. My friends are such good people, so generous and thoughtful, and they’ve all offered their time, their support, rides, letters and emails and phone calls, sent flowers and books, lent dvds, lent an ear, and I can’t thank them all (you all) enough. You know who you are. I feel surrounded by love and how can that be unlucky?

fourth chemo: out of the ordinary

By my fourth chemo treatment I was getting used to the routine, but this time things were different.

First of all, I had a mammogram scheduled for 7:30AM, two and a half hours before my chemo. This was my first mammogram and it was pretty much how friends had described it to me: essentially a boob squishing event. I wasn’t expecting quite so much manhandling (by a woman, mind you), though. I was to stand *precisely* the way she moved me and she would make these minute little adjustments. And I was pressed right up against the cold machine w/my head turned sideways. Since they needed about 4 angles of each breast, the technician would come out from behind the plexiglass and adjust me between each picture. My big question was why the room had to be kept so friggin’ cold.

It all went fine, it wasn’t the worst experience, but it wasn’t what I’d call pleasant. The problem came when they realized they couldn’t get a proper view of my right breast because of the port in my chest. I had to go back in and get an ultrasound on it instead. They saw some extra tissue which they are assuming is fine, but because I don’t have any previous mammograms to compare it to, we scheduled another one six months from now.

After all that, I had to go from the 4th floor to the 9th floor for my chemo and made it 10 minutes early. Unfortunately, I signed in, but the receptionist thought I was there to see my Oncologist first, which I wasn’t, so I sat there for over an hour before being let back into the treatment room. THEN they didn’t have a chair for me, so I had to sit in a “satellite” chair that had no curtain around it. No biggie, but then I was told my nurse, Jackie, was out that day and I would be seeing Paula instead. Again, no biggie, but as I’ve said this is a busy place and when there is a nurse out, everyone else has to handle the other’s patients. I have sympathy for this as well as empathy, since my day job as a secretary involves covering my co-workers’ attorneys during vacations, etc,… But Paula was also training a nurse who hadn’t done this work in years. As you can imagine, this made everything take even longer. I didn’t end up leaving until 4:30 that day. That sucked.

If you read my post dated May 6, I was actually writing about May 9, and that was the morning my IV came unhooked. That was the continuation and ending of the annoying episode of my 4th chemo treatment. But it all ended alright and I even managed to salvage the Tshirt I was wearing, which happened to be one of my favorites.

Later that week I was considering how to proceed regarding disability and, as my mom advised, I spoke w/an employment attorney. I was lucky enough to speak with an attorney who used to work at my law firm, so it was someone I knew already and who I really like. She was incredibly informative and helpful and was kind enough to not want to charge me at all for her services. I thought a lot about what she told me, slept on it, which is always a good idea when pondering any big decision, and I realized that I’m just feeling too good to honestly apply for long-term disability. I decided that I would have to choose a date to go back to work.

This was an interesting thing to realize since my last day of work was February 9th. I’m getting used to the luxury of having a lot of time to myself, a lot of time to do whatever I want or whatever I’m able to do, but it’s a good thing that I’m feeling so healthy.

a great visit

On Friday, April 27 I drove Todd to work bright and early and drove back to Haverhill and went back to bed. Slept until almost 11 (!!) and drove back to Somerville. I needed to borrow his car to pick up my bff Melissa at the airport on Saturday. Plus I had plans to meet with my friends Tony and Sean in Copley that evening so I wanted to be in town.

Had a great time at Joe’s All-American on Newbury Street w/Tony and Sean. I think the waitstaff was bored because they were unusually attentive and yet, somehow there were mishaps every 10 minutes. It was really amusing. It was my last opportunity to really hang out with Tony for a while because his law school finals were coming up. He is a diligent and motivated student so he’d decreed that for two weeks before finals hanging out would be a no-no. Such a good boy.

Mel’s plane was coming in early the next morning, so I figured I’d pick her up and we’d go to brunch. I was craving a big belgian waffle w/bananas and strawberries and whipped cream. (Well, when am I not craving that?) We almost went to The Neighborhood, one of my faves, but 1. I’d forgotten I took her there on her last visit and, 2. It wasn’t warm enough for them to have the patio open so what’s the point? We tried the Cheesecake Factory in the Cambridgeside Mall, but they don’t even open till 11:30. We’re hungry NOW (now being 10AM). Fortunately I remembered Johnny D’s and hell, it’s in my neighborhood. Thank goodness, it was delicious.

Then we drove up to Haverhill where Todd and Mel geeked out for a bit, both of them being far more into and knowledgeable about computers than I. That evening was all about Says You on NPR, brownie sundaes and SNL sketches on You Tube. For the entire rest of the weekend Mel and I were alternatingly stuck on singing “Chronic -WHAT? - cles of Narnia” and “Dick in a Box.” It was hysterical. True dat - DOUBLE TRUE!

Sunday we hung out in Haverhill a bit and did some shopping in the rain. Drove back down to Somerville and had Dominoes pizza because it was nostalgic for us and hell, it was so craptacular outside that pizza seemed the perfect antidote. And indeed, it was. We made it over to the Burren that night, but it was a quiet evening over there.

On Monday we decided to do Copley and Newbury Street. It was a gorgeous day, so we did a lot of walking, window shopping and real shopping. Mel introduced me to my new favorite addiction, Teuscher Chocolates; specifically the champagne truffel. Dadburnit it they are amazing!! And wow, tres cher aussi! Then we got more nostalgic and walked through the Gardens and up Charles Street to the red line.

That night my belly was in some weird pain, so I was worried my plan for us to go to Toad might not happen. Fortunately the pain subsided and we made it. We arrived much later than I usually do, so the place was packed, but we managed to get a seat. It was a good night: great music (thank you Tim and band), saw many friends and stayed till they closed the bar.

Tuesday was the day Mel was scheduled to fly back and boy was I wishing we had one more day. We had brunch at Rosebud then walked to Harvard Square along Mass Ave and visited The Paper Source (one of my favorite stores) and a number of book stores. It was another lovely sunny day, too.

Overall, a fantastic visit, perhaps, as Comic Book Guy would say, “best visit EVer.”

third chemo - lesson learned

Every two chemo infusions is considered a cycle, so my first two chemo treatments were one cycle. At the beginning of each cycle, or once a month, I meet w/my Oncologists to assess my progress and the affects of the drugs on me. So this morning, April 23rd, I was to meet w/the doctors at 9AM and walk down the hall to the treatment room afterwards.

Usually Todd and I stay in Somerville the Sunday night before my chemo morning, but decided this time to stay in Haverhill and just leave early. I couldn’t imagine we’d need to leave before 7:30 for a 9AM appointment, I mean, it’s usually 45 minutes to town. NEVER AGAIN. We were still 15 minutes late to our appointment and we were *so* tired having gotten up so early and from having to deal with his sad flooded basement all weekend. Yeah, remember how it rained like a mother effer? yeah. Plus, that day they were adding a new drug, called Avastin, to my cocktail and I was nervous. The first time they give it to you they infuse for an hour and half to see how your body tolerates it. (If you tolerate it well they go to one hour the next time and then half an hour the next and half an hour from then on.) They check your blood pressure every half hour during infusion, too. Avastin is a blood thinner and its side effects include possible GI Tract perforation (VERY BAD) and slow or incomplete wound healing. Nose bleeds, elevated blood pressure or proteinuria (too much protein in the urine). Weakness, pain, diarrhea and leukopenia (reduced white blood cell count).

First I met with my Oncologist and told him about the low appetite and diarrhea and that I did speak w/Jackie and things were better. He said if they’d known I was doing that poorly for that long they’d have made me come in and given me an IV w/liquids. Evidently I was severely dehydrated. Not letting that happen again; lesson learned.

Went down the hall to the treatment center and I was doing alright. Had one cracker w/cheese and suddenly I was struck by massive gas pains and nerves. I’d already received my anti-nausea pill and my IV steroid and they’d begun the infusion of Avastin, but something was wrong with me. Jackie gave me an Atavan to calm me down and a dose of Mylanta and Todd ran out to get us sandwiches. My doctor said he’d like to make sure I could eat, wait half an hour more, then begin infusing again.

This was a big time setback. I had 1.5 hours of Avastin and then 2 more hours with the Leucovorin and Oxaliplatin and another 10 minutes including the 5FU syringe push and setting up the home pump w/backpack. Oh well. At least I knew they were taking care of me and being careful, so that was good.

The Atavan really helped, the gas also subsided and I ate my Subway sandwich and they hooked me back up to the Avastin. My blood pressure was fine for every check-in and the rest of the infusions went without incident. We drove back to Haverhill and I curled up with the Zack man.

I spent most of that week in Haverhill. Usually I don’t like to be so cut off from things, being a city girl, but this time I was so fatigued and sleepy it was alright to not feel any compulsion to go anywhere or do anything. My nurse, Sherry, came to unhook me on Wednesday and I didn’t even change out of my pjs as I usually did, just lazily opened the door and conversed with a lot less animation. Zack is hilarious, he always jumps on the couch for his front row seat to the goings on. Very adorable and, fortunately, Sherry is a cat person so she doesn’t mind.

Decided I’d include a picture of my healing scar, just to show that it is, indeed, healing. There’s still some swelling, of course, but isn’t the body amazing?


second chemo: more side-effects

My second chemo involved a shorter office visit, which was nice. But I was already beginning to loathe the backpack. I should just be glad it’s only 46 hours of infusion.

I just realized there are a few, possibly pertinent, things I’ve left out. One is that Todd bought a house in Haverhill. He’d been wanting to buy a house for about two years feeling he was throwing too much money away on rent. And on gas - his ride to work from Somerville was 45 minutes each way and well, we all know where the price of gas is going, thank you Bush and your useless war in Iraq.

With that and my not working in mind, I’ve been splitting my time between abodes. It’s a great house, really adorable and bigger than it seems. Just right, I suppose, with a big back yard, too. But I will be keeping my apartment in Somerville. It’s easier and faster for me to get to work from here. While there is a commuter rail stop for Haverhill just over a mile from Todd’s that takes me right to North Station (I’ve taken it a few times), I prefer not to be tied to a schedule. I can get to Somerville from work numerous ways, including walking, which I’ve been known to do. It’s a great 6 mile walk and if I tire before it’s up, I can jump on a bus or the T. I like the freedom of not owning a car. (Ok, I miss my old Pontiac T-1000 from time to time. One day I’ll own another crap car and I’ll love it when I need to use it.)

ANYhow, on Thursday of the week of my 2nd chemo Todd flew to Vegas to attend The NAB (National Association of Broadcasters) Convention for work. Since he’s got Zachary at his house and I’ve got Lucy at the apartment, I spent some time in both places and drove back and forth. It was good to spend some more time in my apartment and I enjoyed a number of “me-venings.” (I can’t take credit for that, my bff Mel told me ’bout that one saying a friend of hers said it. I love it.) I even went with my friends Anais and Melissa G to get pedicures and then back to my place for tea and yummy British biscuits. It was grand.

The only problem was my stomach. I was having sharp stomach pains that would come in waves. I also made many unfriendly (morbid, Mel!) trips to the bathroom and lost my appetite so thoroughly that I flirted with the idea of alternative therapies. Even called some friends who know how to get what I needed. Now I understood why cancer patients would turn to this therapy, as it were.

I was having trouble eating from Thursday, the day Todd left, till the following Tuesday when I finally called my nurse, Jackie. (Would have called on Monday, but Monday was April 16th, which is Patriot’s Day here in MA, and the treatment center was closed.) She advised mucho Immodium. I took her advice, drank more water and I was cured of that problem, for the most part.

Unfortunately, more side-effects were rearing their heads. After the first infusion I did not experience what is called neuropathy, but this time I did. Neuropathy is a sensitivity that affects mostly hands and feet. My feet were alright, but my fingers were definitely being affected. It’s only when they’re in contact with cold things or just cold air. Reaching in the fridge to get my yogurt, which during Chemo Week (”CW”) I must leave out for a few hours before I can eat, hurt my fingers. The feeling is similar to those needles and pins that happen when your hand has fallen asleep and is now waking up, but more intense. Running them under warm water helps. That and keeping warm in general.

Another side-effect that startled me presented itself when in I was in my hood later that week, April 19th to be exact. (I’m a little anal and like my mommy I keep a ‘daybook’ which gives a lean list of what I did that day. Hers are great; we’ll be eating dinner and she’ll bring out a book and ask us all if we know what we were doing 8 years ago today. Love it.) I was at the parking clerk far up the street getting my guest passes when I felt my lips involuntarily pursing while I was in line. It was sooo strange, but I could tell it was from the cold and fortunately didn’t need to have a full conversation. But then I had to stop by the PO and ran into my UPS dude. Nice guy, loves to give me guff for all my Zappos orders, etc,… He’d noticed I wasn’t around much and spoke w/my landlord who told him about Todd’s house in Haverhill. He was razzing me about us eloping or something and I was laughing, but realized it was getting harder and harder to control my mouth. Even my tongue was feeling kind of numb. Truly bizarre. Fortunately he had lots to deliver and I ended our brief conversation letting him know I’d be staying in the neighborhood.

This strange side-effect was not listed. Just goes to show you the doctor’s do not know everything. Not that you thought they did. They need their patients’ feedback so the patients can teach them. Knowing this, I try to make note of all the little things and the not-so-little things because you never know.

first chemo

To continue from the last post, which was longer than I meant for it to be, I was sent home with my 5FU on my back ready to take on the world. Or take on the cancer.

The backpack is bigger than necessary for the drug bag and pump I got, but Apria had run out of the usual pack, so they sent the backpack instead. It felt weird to me to be wearing a backpack around the house; I constantly felt like I was about to go out. And it makes this noise about once every 30 minutes or so that sounds like the shutter of a camera, so at first I wondered if I were being surveilled. That should make for a very boring documentary.

Beyond the strangeness of wearing a backpack 24/7 for 46 hours and the noises it emitted, the home chemo went well. I did experience the side-effects they warned me about in person, and which are listed, but not as clearly, in the drug literature. One of them is a sensitivity to cold food and drink. My doctor said I wouldn’t be able to eat ice cream. No big deal, I thought. But it’s way more intense than that.

My attempt to drink my crystal light from my cool (not cold) water bottle resulted in a feeling similar, I imagine, to trying to swallow a plastic piece from a child’s toy. OUCH. I took my prunes out of the fridge and left them out a while. Not long enough, apparently, because when I started to chew on it, my jaw seized up like I’d eaten the most sour candy ever made and I had to spit it out.

This took some getting used to. I had to consider how much cold food I eat. No cereal, no cold or even cool drinks (I now had to make sure to have an extra water bottle filled and out on the counter so I’d have plenty of room temp water at my disposal), no yogurt unless I left it out a couple of hours. Same goes for cheese. No pudding. No salad. No Ensure, on which I’d been relying to make up for calories for a few weeks after the surgery and food was unappetizing. Ugh. I was bummed.

And there was also a general unease of belly. Nothing tremendously bad, just a distaste for much in the way of food. But I didn’t get mouth sores or any of the other really bad sounding things on the list. I did feel tired. They told me exercise helps fight fatigue, so on Tuesday I managed to go for a bit of a walk, just a couple of miles.

That Wednesday was my first visit from an Apria nurse. She arrived just before the pump was finished, we chit-chatted amiably for a little bit and then she unhooked me. That is she removed the medical tape from around the port (ouch), flushed the port again with saline and heparin, then pulled the needle out (ouch, again). All done - ahhhh freedom. I now look forward to my Wednesday’s release with much anticipation.

Thursday was uneventful, but Friday I experienced a major drop in mood, energy and lots of belly pain. I was having trouble climbing stairs without getting winded and every time I stood up I felt lightheaded. The pains in my stomach were like diarrhea pains, but wouldn’t pan out as such, which I suppose was a good thing. I gave up early on that day and spent most of it in bed watching episodes from the 2nd season of LOST that my friend Leslie from work kindly lent me.

Saturday morning I woke with Zachary by my head, lying with his paw on my shoulder. It’s like he knew I wasn’t well and was trying to comfort me. I got a shot of it with my cell phone, but it’s too grainy to upload. Man, it was the sweetest thing ever. I love that cat.

This is just another picture to display Zack’s awesomeness….

lazy Z

not your girlfriend’s chest implant

Friday, March 23rd, three days post CA trip and I was to have surgery to implant the portable catheter (portacath) in my chest. Right, not that kind of chest implant. Too bad for me. It’s a small mechanism that connects directly to a main vein. Underneath my skin it looks like a small stack of maybe 2-3 nickels. Weird. No tank tops for me this summer!

ANYway, the surgery was scheduled to take about two hours, including recovery, and was easy as pie compared to all the other procedures I’d been dealing with lately and the nurses and doctors were all exactly what I’d come to expect, courteous, friendly and caring.

The following Monday, March 26th, was my first day of chemotherapy. I’d seen the treatment center when I met my Oncologist and it’s one of the things that swayed me to have my chemo at BIDMC.

By the way, for anyone concerned about second opinions, my doctor discussed my treatment with an Oncologist who works for both BIDMC and Mount Auburn and they agreed on the course of drugs. I also made an appointment at Dana Farber, but then spoke w/an Oncologist friend of a friend. I asked him what he thought of the drugs they’d be using and he said, “Let me see if I can tell you what they’ll be giving you before you tell me.” He proceeded to name the exact drugs and followed that up by letting me know that was the absolute best care I could ask for. So I cancelled my Dana Farber appointment and felt good about it. Even meeting with someone at DF would involve getting all my records and my pathology slides sent over, etc,… I already felt my doctors at BIDMC were a good personality match and at this point, that’s what matters. That and the quality of the treatment center.

The treatment center is on the 9th floor of the Shapiro Building of BIDMC. It’s a large room that has big windows (lots of natural light, which is a huge plus for me). There are padded, reclining patient chairs lining the walls, each with its own television and curtains you can pull all the way ’round for privacy. There’s a small kitchen stocked with miniature sodas, individually wrapped snacks like graham crackers, cheddar cheese, saltines and snackwells. There’s also a water filter and the icebox is full of mini ice creams and sherbets. The patients can have any of these at will. There is also free high speed wifi in this room. That sealed the deal for me.

This is a busy room. I shouldn’t have been surprised, given the statistics about cancer, but I was. It’s a sad realization to see for myself just how many people out there are receiving chemotherapy for cancer. I had a 10AM appointment, but the place was packed so I had to wait a little bit for an open chair. Once I was seated I met my nurse, Jackie, a seasoned chemo nurse who is very nice and funny. We get along well.

She accessed my port, that is to say, after swabbing the area with alcohol she inserted a 3/4″ needle straight into the middle of the port. At that point, the area was still quite tender, so the needle hurt. But after a that huge inhale of pain, the was no more fussing with the port. The other connections would be made farther down the tube to which the needle was attached.

The routine has become that she flushes the port with a syringe of saline and then with heparin, to avoid clotting. We then start with a small bag of a steroid of some kind as well as a bag of saline for hydration. Jackie then hands me an anti-nausea pill.

Once the bags of saline and steroid are empty, Jackie brings over a bag of Leucovorin, which is essentially folic acid and it increases the effectiveness of the drug they send home with me. The Leucovorin gets infused at the same time as the last drug, one called Oxaliplatin. Its listed side effects are:

  • itching or hives, swelling in face or hands, swelling or tingling in mouth or throat, chest tightness, trouble breathing
  • blistering, peeling, red skin rash
  • clumsiness, unsteadiness, trouble with normal daily activities such a writing
  • dry cough, noisy breathing, shortness of breath
  • dry mouth or increased thirst, ongoing or severe diarrhea or vomiting
  • fever, chills, cough, sore throat, body aches
  • numbness or weakness in your arm or leg, or on one side of your body
  • lightheadedness or fainting
  • numbness, tingling, or burning pain in hands, arms, legs, feet, mouth or throat
  • pain, redness, burning, swelling, or skin changes where the needle is placed
  • sudden or severe headaches, problems with vision, hearing, speech or walking
  • unusual bleeding, bruising or weakness
  • yellowing of your skin or the whites of your eyes

How’s that? And that doesn’t even include the “less serious side effects” like constipation, stomach pain, loss of appetite, sensitivity to cold objects or cold temperatures (check on all those for me!), hair loss, mild skin problems, increased sweating, jaw pain, trouble swallowing, joint pain, unusual taste in mouth and weight changes. Huhn.

Those drugs take about 2 hours to infuse, so all tolled it ought to take about 3.5-4 hours each visit, except that because this was my first time and Jackie wanted to make sure to explain everything, this visit took approximately 5 hours or so. And I haven’t even mentioned the 5FU!

5FU is the aptly named chemo drug they send home with me to infuse for 46 hours straight. It’s the drug that says “F U to cancer!” This drug is attached to the line on my portacath at one end and a mechanical pump and drug bag at the other. The pump and drug bag are contained in a plain black backpack that I wear for the full 46 hours. When I go to bed I place the backpack on my bedside table.

The side effects of 5FU are similar to those of Oxaliplatin, including nausea or upset stomach, hair thinning, diarrhea and mouth sores. The nausea hasn’t affected me and I thank the many anti-emetics they’ve given me. These are pills that prevent me from getting nauseaus and they are glorious, if a pill can have such an adjective applied.