The Merry Month of May

This past week was a very hot and humid one for early June. Somehow we went from spring to summer in one giant leap.  May saw weather so cool that I pulled out a couple of the turtlenecks I had packed away for the summer. May also brought its share of very warm weather and several devastating storms to Missouri when warm moist air from the Gulf of Mexico collided with cold air coming from Canada. On May 22nd, a third of the city of Joplin, on the other side of the state, was obliterated by the deadliest single tornado in the United States in over 60 years. The images from the devastated area were surreal, with twisted stumps of trees stripped of their bark, debris strewn everywhere, and empty slabs of concrete where houses once stood. Although we managed to dodge that bullet, I did spend a couple of evenings in May hunkered down in my basement laundry room, with the tornado sirens sounding in the neighborhood. After the horror in Joplin, I take the need for cover even more seriously than before, taking medicines, money, and other items of importance down there with me.

May also brought other things – good things. On May 25th, I drove up to Barnes West for my final round of radiation. Before radiation, I had imagined it would feel like forever having to go for treatment every day, Monday through Friday for six weeks. In fact, the days just breezed by and were over before I knew it.  I was so fortunate, once again, to be spared the fatigue that many people suffer from the process.

During the first five weeks of treatment they radiated my whole right breast, first from one side and then from the other each day. For the final week they focused the treatment on the immediate area around where my tumor had been, in case there were any lingering, isolated cancer cells that had somehow managed to escape surgery and then the full force of chemotherapy. If there were such cells still there, then they were much hardier than the other fast growing cells in my body. The outer lining of my tongue and my hair follicles  seemed to roll over and die pretty quickly.

After six weeks of treatment, radiation left me looking like one side of my chest had been sent on vacation to a nude beach in Rio, while the other side looked as though it had spent the winter bundled up in Scandinavia.  Now, two and a half weeks later, my skin has faded to a light tan.  I’ve also started to peel.  I wish I had fond memories of that beach in Rio to blame for that!


So, on Wednesday, May 25th, the third stage of my treatment plan was completed. I did celebrate that evening with champagne, albeit a little later than planned. The 25th was another of those very stormy May evenings during which we relocated to the laundry room as the neighborhood sirens sounded. We waited to drink a toast until after the threat of tornadoes had passed. Now, all I have left in my personal cancer marathon are the herceptin infusions I will continue to receive every three weeks until November, and the aromatase inhibitors that I will take daily for the next five years. More milestones to celebrate, and more excuses for champagne as each one of those stages is completed!

Déjà vu

If you have ever seen the movie Groundhog Day with Bill Murray and Andie MacDowell, you will have a sense of how I’ve been feeling about the past 5½ weeks.  Since I started radiation therapy on April 14th, my life has become a series of days that resemble each other unremarkably in their sameness.

I get out of bed each weekday morning at about 7:20 and catch up on e-mail, eat a light breakfast, putter for a little bit and then suddenly look up at the clock, astonished to see that it is quickly nearing the time I should be leaving the house to go to the treatment center. I throw on clothes, sometimes without the time to iron them first, pull together a lunch, if I’m going to work that day, and bolt out the door for the 25 minute drive to treatment. I have gotten on the road in such a hurry several times that I have questioned whether, in my haste I locked the cat in a bedroom, or turned down the heat, and then I fret about it and try to decide whether to return home between radiation and work to check on things.  I have left my lunch behind on at least one occasion. Invariably, I just make it on time.  I scan my ID card, which lets the technicians know I have arrived, let myself into the treatment area, and zip into the women’s changing room, where I change my top for 2 hospital gowns: one open in the back, and the other one over it like a robe.  Then I wait in the lovely little sitting area, and turn the television channel to MSNBC (yes, one is allowed access to the remote in this semi-private waiting area.)  I catch up on some of the headlines and usually within short order one of the technicians comes to get me for my treatment.

The women's private waiting area

There is one cavernous radiation therapy room, staffed by five warm and wonderful technicians. The room, however, is not warm. It is kept chilly to compensate for the heat put out by running the very large linear accelerator, the machine that provides the doses of radiation. One of the technicians finds it so cold that she wears long underwear all year long! Despite the chill in the air, the hospital has gone to some effort to make the room relaxing, with music in the background, low lights, and a set of tropical beach lightshade panels over the table you lie on during treatment. The dim light also helps the staff as they use green laser beams that emanate from the ceiling and the walls to line patients up correctly with the accelerator. They also provide warmed sheets to cover you, but these tend to lose their heat very quickly. 

The treatment room with the linear accelerator

Every day, I enter the room, shed the outer robe, and climb onto the table. 

The treatment table

I slip my arms out of the other gown so the two technicians working with me that day can access my tattoos, which they use to line me up precisely with the machine. My arms go above my head into armrests so they are out of the way.  It’s not a position I’d care to assume for long.  The techs nearly always have to remind me to turn my head to the left, to move it as far from the radiation beams as possible. And, except for breathing I am not to move while being treated.

In position and ready for lift off

The view above me

Once I am properly situated, the technicians leave the room and the arm of the machine moves from above me to my left side, where it delivers a short burst of radiation. Then the arm moves up and over me to the right side, where it targets the tissue from a different angle.  It’s short and relatively simple.

For the first three weeks, there was not much change that I noticed.  Then one day, my treated skin turned a mottled pink.  A day or two later it was solidly pink, the color of a medium rare steak.  It has remained that color ever since, and is slightly tender, like my skin when it is sunburned.  Every night, I dutifully apply the steroid ointment the doctor prescribed and then the moisturizer they gave me. Every morning, I use a cotton ball like a mini powder puff to pat cornstarch on the affected skin to minimize friction.  

On Wednesdays, after treatment I have a brief meeting with my wonderful doctor, who comes in, shakes my hand, takes a look and tells me that everything looks great. Last Wednesday he also told me that my treatment would change for the last five sessions.  Instead of targeting the whole breast, the final treatments would focus on the area around where the tumor was.  That was a relief, as it meant that the reddest of the red part of the breast would be spared further radiation. 

So that sense of routine – of waking up every morning and marching forward steadily through the treatments and through the day every weekday for the past 5 weeks and 2 days has helped move the process along more quickly than I imagined it could. Now here I am, in the third week of May with only three more rounds of radiation left. Come Wednesday by noon, I will have another part of this marathon behind me.  I think another round of champagne will be in order!   

That Natural Glow

Last week on yet another gray Monday morning, I made my way downtown to my treatment center for my tri-weekly herceptin infusion. This process feels so routine now that the full blown chemotherapy has ended.

In some regards, a lot happened during the three weeks between infusions – and, in fact, during the time since I finished chemotherapy on March 7th.  After a few weeks break, I met with my radiation oncologist on April 6th at my cancer center’s satellite site in the western suburbs, to do a mock-up of my radiation therapy. As always, I went armed with a list of questions – some gleaned from the American Cancer Society web site, others from information friends sent my way.  My friend, Joan came over the day before my appointment to give me a preview.  She was diagnosed a month before I was and was fortunate to be able to forgo chemotherapy.  She did undergo the 6 weeks of radiation therapy under the care of the same doctor I am seeing, Dr. Z, whom she liked very much.  It was great to visit with someone who has recently gone through much of what I was preparing to experience.

At my pre-radiation appointment I became a coloring book for the doctors and the technicians.  I was drawn on with markers by several hands as they outlined the area to be targeted.  I received numerous pen tip sized tattoos to help them line me up with the device that delivers my daily dose of radiation, five days a week for six weeks.  Ouch!  They even took photographs of my decorated chest for help in calibrating the treatment area.  

Abstract art marks the spot!

Since then, I have taken my own photographs to share what the treatment area looks like.

The Linear Accelerator, which delivers radiation treatment

The treatments are flying by with no major ill effects. I have had 17 treatments, with 13 left to go, and my skin is only marginally pinker than before.  I slather my chest each night with a prescription steroid ointment and moisturizing cream that the doctor provided.  The only downside of that is putting on my nightshirt afterwards – it sticks to my slightly gunky skin.  In the mornings I apply cornstarch to the treated area to reduce friction, and then I’m good to go. I do get tired a little more easily, but it’s not the major fatigue many radiation patients experience.  I’m not sure why I’ve been so lucky, but I certainly won’t spend much time worry about the whys on this one.  I just thank my lucky stars and feel very fortunate -- and grateful for whatever it is about me that has made this easier than it could have been! 

What's Up?

For those of you who have ever listened to Car Talk on NPR, you know that the "Puzzler" occasionally goes "on vacation". Well, that is what this blog did for a few weeks. I wish it had taken me with it, but it went away alone for a bit, while its author stayed put, for the most part. That is until I flew off this past weekend, my first trip in 16 months, which is a long time for me to stay put, for a fabulous family gathering in honor of my cousin Bill's 90th birthday.  

I will provide a quick update now, and once my taxes are done (cutting it a little close, aren't I?!), I hope to catch up on posts.  The long and the short of it is that I took a little longer to regroup from my final round of chemo than had been the case previously. I felt somewhat puny for an extra week or so, before suddenly turning a corner. My energy level is quite good, although I was fortunate throughout chemo in that it was never really very low, even when my hemoglobin levels were down. So things are coming along.

I have started taking anastrozole, an aromatase inhibitor, which I will take daily for 5 years to block estrogen production in hopes that it will keep further breast cancer at bay. I am still receiving herceptin infusions, but the schedule has been changed from a weekly dose to a triple dose once every three weeks. I had my second triple dose on Monday. Saving the best for last, tomorrow I start radiation therapy, which I will receive every day, Monday through Friday for 6 weeks. Throw a bone scan and another heart scan in there and it really is quite a schedule!


Between recuperating, getting ready for the next steps, working, my weekend trip, pulling together a monthly newsletter, taxes and applying for some grants, I have had a busy 5 weeks since chemo ended. I hope to write about some of that over the next few weeks.  In the meantime, keep your fingers crossed that I won't glow in the dark or suffer major skin burn.  Oh, and wish me luck!  

Is Nothing Really Ever As Easy As It Seems?

Four days after my last round of chemo on March 7th, I received a $1,500 bill from the physicians’ billing department at my treatment center.  In the fall, I had applied for, and received, full financial assistance for covering my out of pocket expenses for a year from the time of my cancer diagnosis.  I was eligible because, since leaving my job of 20 years in 2007, my income has been substantially reduced and I have a high deductible health insurance plan. 

I was certain that the bill was sent by mistake. When I was originally approved for assistance, I was told to call the billing department if I received any bills and they would take care of it. So, on Friday morning the 11th, I called the financial office, only to be told that the one thing they don't cover completely through financial aid are the chemo drugs.  A minor detail!  The chemo drugs cost about $8,000 per round, and, apparently, the physician's assistance program only covers 40% of that cost.  I am responsible for the other 60% until I meet my annual deductible, which is $5,000. This was news to me.

Well, after six rounds of chemo, and being pretty much an emotional rock from my diagnosis through surgery and chemo, that was enough to tip me over the edge. I had a bit of a meltdown after I got off the phone. The financial assistance supervisor said I should speak to the oncology social worker, but I was too wrought to speak to anyone intelligently about the issue that day. I finally made some calls the following Tuesday, and discovered that because it's after the fact there is only one foundation that will take a "look back" at previously incurred expenses. (Gee, if they had let me know this before the fact, I might have applied for additional help up front, and it wouldn't be after the fact!) To complicate matters, this particular foundation only opens the application process on the first of every month at 11:00 a.m. Eastern Standard Time -- standard, not daylight, not moonlight, not eclipse -- no matter what time of year it is. The phones are open until they run out of the allotted funding for the month.  So, on April 1st, I will be among the many people sitting by the phone, waiting for the stroke of 11 EST, to call and apply for additional assistance to cover the gap in my 100% financial aid!

Despite my initial shock upon learning that I am responsible for this bill, I do know how very fortunate I am to get the aid I'm receiving and I don't want to sound ungrateful. My treatment has spanned two calendar years, and could have cost me $10,000 out of pocket, so $1,500 is a relatively low price to pay. I just can't quite get over the irony that here I was sailing along, so relieved not to have to worry about the fiscal implications of cancer, and then five days after my last round of chemo the "other shoe" dropped. In this case it was a good sized financial one!  This begs the question – is nothing ever as easy as it seems?

P.S.  For those of you who might now be inclined to reach for your checkbooks, please know that if I don’t get the foundation funding I have other options, including an extended interest free payment plan. So put your checkbooks away, or write a check to NPR or the Red Cross’ effort in Japan instead, since I don’t have as much to give them at the moment as I would like.

Monday Monday

Monday again, and here I am back at the hospital.  However, with chemo now over, today is the end of one regimen and next week will be the start of another.  Today was my last weekly herceptin infusion.  I am scheduled to go back next Monday and have a three-week infusion, meaning that I will get a triple dose of this anti-clonal antibody.  Then, I will only come in once every three weeks after that for hour long herceptin infusions.  This routine will continue into November, until I've had a year's worth of treatments.  It will be a welcome change from having to turn up at the hospital every Monday.

I have been coming to the hospital for treatment for the past 19 Mondays. Each week I have carried my pocket-sized camera in my pack, with the intention of photographing the Gateway Arch from the treatment floor every week. The Arch is located just about three miles east of the hospital. Today, March 14th, an unexpected thick wet snow has obliterated any hope of seeing that monument let alone photographing it.  Oddly, this is in keeping with most of the Mondays I’ve been here. Not that we’ve had snow every week, but there has been a preponderance of gray, cloudy Mondays, which have made the Arch a dull subject.  As I look back on the days I did shoot the structure, I see that we had at least one beautiful clear sunny day – on Monday, February 14th.  Here are a few of the images I’ve captured of the varied moods of the Arch.

This last one was taken from the 14th floor of the hospital -- not the 7th where the treatment center is located. The 14th floor provides an amazing view and a very different perspective of the area. With at least a dozen more visits to the treatment center between now and November, perhaps I'll have some better opportunities to capture the St. Louis icon under better light through the seasons. It would certainly be a great venue for viewing the fireworks on July 4th!

Chemo: Round 6, Take 2!

I'm happy, and a bit surprised, to report that I am sitting in a lounge chair in treatment pod 7, hooked up and nearly ready for my 6th and final chemo treatment.  I certainly didn't expect to pass the platelet or hemoglobin tests this week, and was mentally prepared not to receive chemo.  In fact, I was almost sent home to wait another week. My hemoglobin is awfully close to the point where I should get another transfusion, and, although my platelets rebounded from an all time low of 34,000 to 78,000 per micro liter of blood, that was still only a mere 3,000 over the no chemo zone. But after consulting with the study coordinator and the fabulous Nurse Shannon, the doctor agreed to give me the taxotere and carboplatin at slightly reduced levels, so we can get through this, without having my platelets won't fall off the chart.

When I came into the pod of 4 recliners and 2 beds, the place was full.  One nurse had to leave -- she'd lost two teeth, or rather a bridge with her front two, and needed to get to the dentist. It was 2:30. The other poor nurse was left alone with 6 study patients to monitor, which makes a slow process even slower.  I started to get the infusion at 3:30, and before I knew it the benadryl had knocked me out.  Every time I opened my eyes at least one person had left and been replaced by another patient.  When I awoke again at 6:30 I was the only person in the pod, finishing up my cocktail.  It is now a bit after 7:00 and I'm having a final saline flush, before they pack me up and send me off.  My last chemo was, in the end, very anticlimactic, but I'm happy to have it done, nonetheless!