I'd Like to Thank the Academy

It's that most American of holidays, Thanksgiving, and this year I would like to give thanks for so many things and to so many people.

I am eternally grateful to the doctors, nurses and medical staff who provided such excellent care and counsel. I am extremely thankful for the friends, family and colleagues who have provided such a wealth of support. I am particularly grateful to Lydia, my dearest friend, for all that she has done for me, and with me, during this long journey.

And it has been a rather long journey. After starting it in late August of 2010, I finished my yearlong Herceptin treatment in mid-October 2011. My port was removed just over three weeks ago on Halloween. I had a heart scan and a visit with my medical oncologist that same day. Everything checked out fine, despite one little mysterious abnormality in my other breast that called for an ultrasound. All was clear. I trust it will continue to be so for many years to come. Now I will continue the journey in a less invasive way, by taking an aromatase inhibitor daily for the next four and a half years, regular visits to the doctor and alternating having a mammogram and MRI every six months. 

It has also been a costly journey and I must acknowledge several wonderful groups that have helped me manage the out of pocket costs. Both Barnes-Jewish Hospital and the Washington University Physicians, who staff the Siteman Cancer Center, offer support for those who meet certain financial criteria. They helped with expenses not covered by insurance. That included my annual $5,000 deductible, which the hospital and physicians group covered in full in 2010.  In 2011, the physician’s group covered 40% of my chemotherapy drugs until I reached my deductible in early February.

To help subsidize the 60% of the chemotherapy costs not covered by the physicians or insurance, I applied to the wonderful Co-Pay Relief Program of the Patient Advocate Foundation for a grant. They paid a significant portion of the balance I owed to the Washington University physicians, and I am so grateful for their very generous support. The Co-Pay Relief Program is one of the few programs that will take a look back at medical expenses already incurred and will assist with those payments. I have also received support from The Breast Cancer Society to help cover related medical expenses, such as the drug, Arimidex, which I will take daily for five years.

With the help of all of those mentioned above, I was able to greatly reduce my balance with the doctors’ group. They then worked with me to arrange an 18-month payment plan with no interest, which makes my debt to them quite manageable, and is a huge help. I am eternally grateful for all this support, and it relieved a good deal of the stress that financial matters can bring, particularly when one is already dealing with serious health issues.

I have had kind offers from friends and family for help of various kinds. It has been hard to know what to ask of people, and luckily I was able to remain fairly self-sufficient. But I really appreciate everyone’s kindness and concern. It may seem a little after the fact, but I now have an idea for anyone who still might want to do something for me. If there were one thing I would ask of people who can manage it, it would be to donate a few dollars to the Co-Pay Relief Program or the Breast Cancer Society, so they can continue to provide assistance to people like me, who need just a bit of help to fill in the gaps created by large deductibles or co-pays. Their help really made a huge difference for me, by providing peace of mind, diminishing worries about how to pay for some of those out of pocket costs. And, in January 2012, I will be looking to both organizations again for support as we begin a new year with a new annual deductible!  Thanks!

Woe is me!

I have been through a lot these past 13 months, and I haven’t let it get me down. I’ve surprised myself throughout this ordeal by being upbeat and pragmatic. But over the weekend I think I finally reached my limit. 

It’s hard enough having hair that is being exceedingly slow in its re-growth.  When I saw the nurse practitioner in July she told me that in her long career she had only ever seen two other patients with such slow re-emergence of hair and she referred me to a specialist. Lucky me! I saw the specialist in mid-September and she asked about the incidence of male and female-pattern baldness in my family, and then recommended twice-daily applications of Rogaine – and not just any Rogaine, but Rogaine for MEN! And I have to give it a six-month trial before we go to plan B, which involves a scalp biopsy to determine the root cause – pun intended. So, I may be wearing scarves for another six months, long past the last of my herceptin infusions on October 17th and the removal of my port soon thereafter.

But the straw that broke the camel’s back came Saturday afternoon, when I was snacking on a small handful of roasted nuts. I hit something hard, which I thought might be a piece of shell, only to discover that it was a bit of tooth. I checked for a broken tooth on the side I was chewing on and, finding no gap, became concerned that the object in question was someone else’s. Yuck! Eventually, it occurred to me to probe the other side and there it was, a seemingly large gap at the back of a tooth. Drat. One of the last things on this Earth I needed was to have a major dental procedure, but there is no way around it the dentist said. I now have to have a crown. Lucky me!

To add insult to injury, despite having stayed remarkably healthy while on chemo, I have succumbed to a stomach bug this week and actually missed work today and a good part of yesterday. I know that the counting of such things is arbitrary, but let’s hope bad things only come in threes and that given my hair (or the sparseness thereof), my tooth, and this bug I’ll be free of this bad luck for a while.  If not, then woe is me!

One Year Later

There has not been much to write about since I finished radiation in late May. I have been very busy, between working three days a week at my office job in addition to doing consulting projects from home. Every three weeks I go back to the cancer treatment center for lab work and a Herceptin infusion. Everyday I take a hormone blocker to further minimize the risk of recurrence. Occasionally, I meet with the doctor, or the nurse practitioner or have some sort of test.  It all seems so easy compared to the four months of chemo, and the six weeks of daily radiation.

But today is a milestone. It marks the one-year anniversary of the discovery of the lump in my breast. I am not big on anniversaries of most kinds, but I have found myself thinking a great deal about this one.  After my doctor discovered the lump, things moved very quickly at first, and then seemed to go in fits and starts. Eventually, I settled into a very regular routine with my weekly Herceptin treatments and chemo every three weeks from early November to early March.  After that I fell into the routine of daily radiation, five days a week for six weeks through the end of May. I found that I quickly adopted the mode of placing one foot in front of the other, which served me well through surgery, chemo and radiation. 

But there is a sort of tunnel vision that comes along with that. I was focused on the present and going through each process of the treatment, and had pushed practically everything else to the side.  But now, with the worst of it over, the blinders have been pulled off and I have been forced to see beyond my treatments to a much larger world. Questions I was grappling with before August 20th, 2010 have reared their head again.  Big questions, like, what do I really want to do with the rest of my life, having left my employer of 20+ years in June of 2007?  How can I make a better living than I am right now and feel like I am doing something very worthwhile – for me and for others.  Life-sized questions.  Perhaps this sudden view of the bigger picture is part of what some refer to as post-treatment letdown.  Dana Jennings of The New York Times wrote about his own experience with this phenomenon as he chronicled his cancer journey in the paper.  His piece Losing A Comforting Ritual: Treatment hits home for me in many regards. It is as though after such intensity you finally are able to look up and outward beyond your own little world of appointments and treatments, and sometimes you are unsettled by what you see in terms of your own future and the state of the world.

So, until I resolve those questions, I have narrowed my vision again and continue to march along, one foot in front of the other until late October when I will stop receiving herceptin and will have my port removed. In the meantime, I wait and watch as my hair takes its sweet time filling in. My last chemo was March 7th. It is nearly five and a half months later and, although I have some fuzz on top, it looks like I’m suffering from male pattern baldness, with a ring of ever increasing dark fine fringe hair that circles my head.  I want someone to take a crayon and color in the top, so I’m not mistaken for a monk. Is her head back in the sand, you ask? I think so for the moment.

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! 

I flunked chemo!

Well, I flunked chemo today, or more accurately, my blood test.  Both my platelet and hemoglobin counts were below the minimum level for receiving chemotherapy, so no treatment this week, except for Herceptin. Needless to say, I'm disappointed.  I was so hoping to finish this second leg of my tetrathalon today.  I am trying to focus on the fact that an extra week's wait isn't much in the larger scheme of things, but I haven't totally convinced myself of that yet.  I will!  In the meantime, keep your fingers crossed that my counts are above the threshold next Monday and I can receive my final round!

Preparing for the Final Round of Chemo

I sit here writing this through a veil of tears.  Not emotional tears -- just the overflow of tears from having clogged tear ducts.  I finally gave up the notion that this problem would resolve on its own, as it has after previous bouts. I guess my tear ducts are more clogged than before, perhaps from the cumulative effects of the chemo. So, on Friday I gave up and called my oncology nurse to see what she suggested. Apparently, this is a more common problem than the literature I’ve referred to suggests. The nurse told me that they can refer me to an ophthalmologist at the cancer center, who will do a procedure to open up the tear ducts. Although I don’t generally like any procedures having to do with eyes (mine or anyone else's), I am looking forward to this one, because this is one of the greatest nuisances I’ve endured since my cancer treatment began. 

In any event, tomorrow is my last round of chemo (fingers crossed it’s a go) and I look forward to having it behind me. Today, I am doing a few of the usual things to prepare. I’m working on a list of questions to discuss with the doctor about what to expect over the next few weeks.  I’m drinking a lot of water, have upped my fiber intake a bit – although I’ve found that this is a balancing act, so I’m not going overboard, and I have just cooked up a batch of Apple Mash as both a treat and a treatment should the often present side-effect of constipation become an issue. Even if it doesn’t, this is a great dessert, especially with a little vanilla ice cream served with it, and when the taste buds go south, as they always do after treatment, I add a good drizzle of maple syrup to enhance the flavor. (This could be why I've managed to put on weight, rather than lose it over the past 18 weeks -- or the weight gain could have something to do with the steroids I take for a week during and after chemo!)  Here’s the recipe in case you want to try it:

Apple Mash

2 lbs. apples, cut in large chunks (I like to use granny smiths)

½ cup apple cider

¼ cup raisins (I like golden)

¼ cup sugar (I tried dark brown this time – it’s a good addition)

¼ cup cinnamon (I use a little less)

Mix all in a 3-quart saucepan.  Heat to boiling over medium-high.  Reduce the heat to low.  Simmer 15 minutes or until very tender.  (I cook it at least 30 minutes – sometimes more) Mash coarsely with a potato masher.

Other than that, things are pretty much routine around here.  I will have labs at 11:00 tomorrow morning, meet with the doctor at 11:40, and, with any luck, will head into treatment at 12:30.  I should be done with my final chemo by 5:30 or 6:00, and then it’s home to relax and let this last round do its work, causing one last cycle of side effects before my body can start to regroup and gradually make its way back to normal!  

Side Effects: Can You Say Peripheral Neuropathy?

I have been relatively lucky when it comes to side effects from chemotherapy.  Although I’ve had the expected big ones – hair loss, low red and white blood cell and platelet counts, and some intestinal troubles, I have been fortunate to be treated in a time when there are very effective anti-nausea drugs.  These are delivered to me through an IV on the same day that I receive my chemo treatments. I consider myself doubly lucky because some patients still experience this most unpleasant side effect despite the use of these meds.  I have also been spared the intense fatigue I hear other people speak of. Some patients write that they can barely lift a finger without needing a rest and they spend much of their time sleeping. Yet I have had to take only a few naps along the way during the 16 weeks since I started this regimen. That is not to say that I haven’t had my share of side effects, but they have been manageable and relatively minor, and most have lasted for only a few days.  Below are a few of the more annoying or persistent ones.

Peripheral Neuropathy:  Until this last round, I’ve only had brief encounters with numbness and tingling in my fingers and toes, or peripheral neuropathy. In rare cases, once you get it, it never goes away, but my experience with it has been fleeting, until now. Round 5 brought on a longer lasting and more significant case of numbness.  I was not able to feel my big toes for a few days, and haven’t been able to feel any sensation in my left thumb for quite a bit longer!  It is truly an odd sensation to touch or poke your thumb and not feel a thing!  I’m confident this will pass.  In the meantime, caution is required when using knives or dealing with hot items because the nerve endings can’t sense and communicate to our brains that we should let go of a hot skillet, or whatever may cause a burn.

Taste:  My sense of taste has come and gone. After each round of chemo I go through a period of 4-5 days when things are tasteless or downright yucky, and I resort to a very bland diet.  During these periods, chocolate doesn’t taste like chocolate at all and is totally wasted on me.  This was the first time in my life that I tasted one M&M and I didn’t even want another – a clear indication that all was not well with my taste buds.  The only foods that are palatable during these taste bud blahs are those with that special quality the Japanese call “umami” or a savory taste.  Umami is now considered by many to be the fifth basic taste, along with sweet, sour, bitter and salty.  Somehow it can break through the blandness and provide some satisfaction.  So when the taste buds go south, I switch from turkey sandwiches to roast beef. We also make a wonderful slow cooker stew with oven-roasted beef, barley and roasted root vegetables. This experience makes me think of my poor mother, who, in her later years lost her sense of smell, and therefore her sense of taste. She found it really hard to bring herself to eat much and she became a little slip of a thing. Food, often the centerpiece of family events, gave her no pleasure.

Tears:  I have cried only a couple of times since learning that I have cancer, and I’m not even sure those tears were related to my own situation.  However, I now shed tears like nobody’s business, especially for the first few hours of the day. The doctor feels that one of the two chemo drugs I receive is the culprit, causing clogged tear ducts. The odd thing with this side effect is that it, like my neuropathy, is a very one-sided problem. My tearing is pretty much restricted to the right eye, and causes some significant vision problems. It is perhaps the most annoying of my side effects. The past couple of days it has been an all day, all night event and I get tired of dabbing at my eye and face as the water overflows onto and down my cheek. After awhile it almost makes me want to cry for real!

Skin: Winter is never a friend to my skin, and despite my best efforts to keep the house humidified, and to lather myself with the dermatologist recommended skin cream, Cetaphil, it is still an uphill battle. Add to that the fact that chemotherapy causes some strange changes to the skin on my fingers and I have a bigger problem than usual. The skin at the tips of my fingers splits and I have had as many as four bandaged digits at time. Talk about a decline in my typing accuracy!  It’s a real challenge to hit the right keys with bulky fingertip bandages on. This nuisance, and sometimes-painful side effect starts with a hypersensitivity to heat. Washing my hands in hot water burns for a couple of days before that sensitivity abates. Then the skin on the affected digits hardens, reminding me of elephant skin. No amount of moisturizing softens it up, and ultimately it starts to split and peel, like an insect shedding it exoskeleton. My thumb looks like a patchwork of layers at the moment.

So, although I consider myself quite fortunate, I will be most grateful when these all passes. It will be good to cry only when I’m experiencing emotions that warrant it!

Jennifer, Hats, Scarves, and Jane Austen

One of several close friends named Jennifer (I once worked in an office full of Jennifers – six in all) was in town late last week and over the weekend. She was kind enough to come over and hang out with me for part of her time here.  Not the most thrilling of endeavors for a visitor, particularly during the first week after a “big” chemo, when I am likely to be even less active and engaged than usual.  She was a good companion and seemed content with the slow pace of things, my occasional lost thoughts, and unfinished sentences – the joys of chemo brain.  We caught up on news, though honestly there was very little news that I could offer, watched Pride and Prejudice (the Knightley version) for the umpteenth time, and she helped the household along on its quest to complete some leftover Sunday crossword puzzles. 

Jennifer also very gamely watched YouTube videos with me of women demonstrating different ways to tie headscarves.  I can manage to tie a decent square scarf, but had not ventured into the realm of oblong scarves.  Jennifer, a very creative and crafty person, in the best sense of the word, adeptly wrapped me in some of the styles we saw, and gave me confidence to give it a go myself.  I even wore one to the local repertory theater on Sunday night where I saw the ever-cheery MacBeth.  It was fun, like playing dress up when I was little.  She even brought me a fabulous fleece hat she had made herself – soft, warm and comfy.  I would post its picture here now, but it went back to Minnesota with her for some slight adjustments  -- my head is apparently quite small, so she will adjust the size a bit. 

It was lovely to have a fresh face on the scene and to have someone here who was comfortable and easy with the snail’s pace of activity at my place.  If one is looking for excitement, this is not the place to be, at least at the moment! (If ever!)  Thanks for spending time your time with me, Jennifer.  It was great to see you!

Blue Skies

“Blue skies, smiling at me, nothing but blue skies, do I see.”

“Blue days, all of them gone, nothing but blue skies, from now on.”   

~ Irving Berlin

After a gray and gloomy winter, with over 80 days of snow on the ground – a record for St. Louis - and record cold temperatures, this is our second of two stellar clear blue-skied days.  What a difference the bright blue color of the sky makes!  Added to that, and although it is still only 23° F at 9:30 this morning, we are actually due to rise above freezing today, and the rest of the ten-day forecast looks even better, with highs in the 40’s and 50’s.  Goodbye snow!  (I won’t give too much thought to “hello, muddy paws” at the moment!)

As we ease toward spring here in the northern hemisphere, the increasing day length also adds to the cheery mood.  It’s so nice to leave work at 5:00 and come home with enough daylight to get the dog out for a romp, fill the bird feeders before dark, and have a good look around the yard.  Despite the very cold temperatures, in the past week or two the birds have started to warm up their voices.  I hear a cardinal calling as I write, and have heard sweet tunes from the song sparrow and the Carolina wren.  Our resident red-shouldered hawk has also become more vocal, as have the area barred owls. 

Although my spirits haven’t been particularly low, I have been plodding along through these 14+ weeks of treatment with my routine of visits to the hospital every Monday, getting into work when I can, coming straight home, and marking time from one week to the next.  I have felt somewhat isolated – definitely self-imposed – as I’ve chosen not to be out and about too much, trying to avoid catching any bugs that flit about more easily in the dry winter air.  My sense of being housebound has not benefitted from the many gray days we experienced in December and January.  It is amazing how uplifting these sudden changes to sunlight and blue sky are, as are the accompanying signs of movement toward the spring.  I can’t wait to sit on the patio, and soak up a little of the sunlight (being very careful to protect my exposed scalp from the rays of the sun) and soak in the progression of the changing seasons. 

We Have Lift Off!

I went to the hospital this morning, fully expecting to be sent home without having chemotherapy, because of low blood counts.  Much to my amazement, the pattern of having my lowest platelet counts on chemo day was broken, and my platelets actually went up!  Yahoo!  Chemo Round 5 was ready for take off, which it did at about noon today.  Five rounds down and one more to go!

Blood Counts!

As I watch the rise and fall of various factors in my weekly CBC (Complete Blood Count) certain trends have emerged. My hemoglobin levels were within normal range when I started this journey. However they have never fully rebounded since that first chemo back in November. They have been below normal range every week since then. They were sufficiently low last Monday that I needed a blood transfusion. I’ll be curious to see tomorrow’s CBC and find out how the transfusion of someone else’s blood impacted my hemoglobin levels. I don’t feel any different, but then I wasn’t overly out of breath or more fatigued than usual before the transfusion, which are symptoms many people have when they have low hemoglobin levels.

However, my bigger concern this week is where my platelet levels are. The last time I was scheduled for chemotherapy we had to postpone it a week, because my platelet levels had dropped below 75 (75,000 per micro liter of blood). Last Monday, they had dropped to 81. I can usually count on them to drop even further by the time I’m scheduled for my next chemo session. If they have fallen further, I’m likely to face another delay in receiving chemo, something I would really rather not have happen. I want to keep moving forward and any delay at this point is a bit hard to swallow. So, I’m keeping my fingers crossed that my platelets will somehow be at least a 76!  Is that too much to ask? Tune in tomorrow!

It's Puzzling

When I'm sitting in the cancer treatment center, I find it hard to concentrate enough to read a book. Each week when I go for treatment, I take a crossword puzzle book along as well as my iPod Touch, and that usually gives me enough to work on if I don't fall asleep in the recliner. However, my sister recently reminded me of fun word puzzle we have had a friendly competition over the past few winters.  (I should say that while I'm enduring real winter, my sister lives in the Virgin Islands.) We give ourselves a week to work on our lists and then get in touch and compare words. Invariably, we each come up with a few the other has missed. The puzzle is printed in the daily Halifax, Nova Scotia newspaper, The Chronicle-Herald, although I haven't ever found it on their web site.  I just have little clippings, which a friend was kind enough to collect for us several years ago. It's a great puzzle to do while on a flight, over breakfast, during a coffee break, or when waiting for an appointment -- anytime you have some moments to fill and want to challenge your mind.  All you need are a pen or pencil and a sheet of paper. 

This is the way the puzzle works:

You are given 9 letters in a 3x3 grid and are asked to see how many words of 4 letters or more you can make from the letters shown. There is at least one valid 9-letter word that can be formed using the letters given.

The rules are:

*In making a word, each letter may be used only once. 

*Each word must contain the center letter.  (CAUTION: it is easy to lose sight of this rule and get off track, only to discover that you stopped using the center letter 15 words ago!)

*There are no plurals or verb forms ending in s.

*No proper names are permitted.

*No words with a hyphen or apostrophe are permitted.

Depending on the word, the paper tells you what you're aiming for, or what the "word target" is. They note what they consider to be good, very good and excellent scores. You get 1 point for each valid word you come up with. 

Here's the one we're working on this week, in case you want to join in the friendly competition.  I'll start working on my list tomorrow at the hospital, and will compare my words with my sister's next weekend. I'll print the words we both came up with sometime next week.  This week the letters are:

Don't forget that each word must use the R.

Scoring:

You've done a good job if you come up with 14 words

Very good:  21 words

Excellent: 27 words or more

Good luck!

The Element of Surprise – Bumping into People

I have been living in self-enforced semi-seclusion these past few months, avoiding being out in public as much as possible, except for a few special events, in an effort to steer clear of the germs that are so prevalent this time of year.  I go from home to the small office where I work part-time and only run the occasional errand, as quickly as possible, avoiding interaction with the general public.  As a season subscriber to the local repertory theater, I have been to a couple of performances, and I did go to one or two holiday events, but if I interact with friends, I prefer to have people come to my home for a visit.  If someone’s coming for a bite, I like to make it simple, so we’ll pick up some take out food and bring it in. That way there’s very little fuss, beyond tidying up the place a bit. 

So, not being out in public, I haven’t run into too many people I know unexpectedly.  When I have, I have found myself unprepared for the awkwardness of having someone I know look at me and try to assess what is going on and what to say.  This is, admittedly, in part a result of my own choices.  In the end, I have chosen not to wear a wig, which might have helped make it much less obvious that there is anything awry. 

My first encounter where I caught someone off guard really took me by surprise.  I was at one of the holiday functions I felt compelled to attend this year and someone came up to me and asked me about the fashion statement I was making, wearing a scarf.  I was a bit dumbfounded, particularly because the gentleman in question had lost his wife to cancer just a few years ago, so although he didn’t know of my health status, I would have expected him to assess the situation a little better without my having to search for my tongue and blurt out that I was undergoing chemo for breast cancer. The poor man clearly felt awkward, as did I, and he retreated before either of us could gather our wits and make a graceful transition from there.

My next unexpected encounter was just after the holidays when I ran into a woman I used to work with years ago.  We were both in a small shop, a rare event for me these days, and I saw her out of the corner of my eye.  I hesitated before going over to greet her, not sure what to do or say.  Finally, I exhaled and went to say hello.  I felt compelled to point out my condition rather than let her wonder, although I didn’t do it as gracefully as I would have liked.  I think I told her rather more than she needed or wanted to know, so I made a mental note to just give a quick summary in the future, and wait to see if there are any questions from the other side.

On Monday, before my weekly Herceptin infusion, I went with Lydia to the Garden, where I used to work, to sit in on some presentations before we headed to the hospital.  It was something she needed to do, and it was far more convenient for me to join her than for her to come all the way back to the house to pick me up when the Garden is relatively close to the hospital. Donning a headscarf, there is no easy way for me to be totally inconspicuous, although we snuck into the back of the auditorium and took seats way off to the side.  As I was leaving to prepare for my treatment (I had to apply lidocaine to the site of my port in advance of arriving at the hospital), I again encountered an old acquaintance who, after a moment of not recognizing me, followed me to the lobby to catch up.  His first comment was a plain and simple statement:  “You’ve been ill.”  What a straightforward, cut-to-the-chase observation! It paved the way for me to give him the quick rundown and then move on to other topics. I was so grateful for his candor, and for making it easy on both of us.  I didn’t feel the awkwardness I had felt in the other two encounters. There was no sense of avoiding the elephant in the room, or who blinks first.  It was just a simple statement of fact, and it provided an opening to a normal conversation of friends catching up.  It was refreshing and taught me a lot about communicating with people who clearly are coping with some issue.  From my vantage point, I have come to realize that it’s best to acknowledge it and then allow the person to fill in the blanks as they see fit.  Will it be as easy for me to do as it was for my acquaintance?  That remains to be seen, but I will certainly try!

The Afterglow

For posterity – or at least for my own recollection, I wanted a picture of myself in my nearly bald state.  However, soon after round 3 of chemo, I seemed to look more like a cancer patient than I had previously, with my skin looking a little sallow and circles under my eyes.  So I brushed that thought aside, until this morning when I awoke with one of the brief side effects that occurs in the first day or two after my chemo – a healthy looking flush to the face.  So here I am without any hair or makeup. But do take note: I still have eyebrows!  

Cleared for Takeoff

It's a Monday, so here I am, back at the hospital. My platelets rebounded from last week's low and are well over 100,000, well over the threshold for chemo, so I have been cleared for takeoff!

The routine this morning was just that -- very routine. Lab work at 9:30, doctor at 10:20 and treatment center at 11:30. The doctor, as always, was delightful and willing to answer my every question. She did point out that my hemoglobin is quite low and I'm likely to need a blood transfusion next week. In the meantime lots of red meat and spinach for me, and perhaps some chicken liver too. She also called me a model patient because I'm coping so well with the chemo! I have always aimed to please!

I'm hooked up and underway. I'm getting a benadryl drip as I type this, so I expect to fade off shortly. More later, perhaps!

3:15 p.m.

Awake again, albeit a bit groggy, after the Benadryl/Lorazepam induced sleep.  Each nurse does things a little differently and I received my Bendaryl first, to be followed by two bags of anti-nausea meds.  They weren't going to give me the Lorazepam until after that, but my legs were already bouncing around in reaction to the Benadryl, making sleep impossible, so I asked them to give me the lorazepam next.  My legs quickly settled and I fell into a much more peaceful sleep for an hour or hour and half.  During that time, I apparently went through all my pre-medications and was put on the first of the chemo drugs.  Now I'm partway through my second drug, Taxotere, and will end with a chase of Herceptin. 

The taxotere is what causes me some side effects I'd rather do without: very teary eyes, especially for the first couple of hours in the morning; skin rashes, leading to toughening skin and eventual peeling, particularly on my hands, constipation and then, possibly diarrhea.  My tongue loses its coating and then foods taste really blah for a week or so, and the newest one is muscle aches, particularly in the thighs.  Fortunately, the taste buds have come back each time, so by the 3rd week, I have gone back to enjoying food.

Ah, the home stretch.  We finished drug #2 and are on the final one of the day, Herceptin.  Herceptin takes a half hour or so to be infused, so I may actually be gone by close to 4:00.  With enough Benadryl/Lorazepam in my system, I anticipate a nice stretch out on the couch once I get there and perhaps another short snooze.  It sounds like heaven to me!

I Want My Chemo!

It is already January 10th, and I have yet to write a piece for this blog in 2011. That is partly because there is not a lot to report.  Last week was, after all, the third week in my three-week chemo cycle, and except for some relatively minor issues, I have been feeling remarkably well.  My energy level has been good, and I worked three solid days last week – one of them was even a seven-hour day, and when I got home I wasn’t exhausted.  As a matter of fact, I am a little puzzled, although not ungrateful, about why I am not more tired.  Everything I’ve read has talked about the major fatigue chemo patients face. Not me, or at least not yet.

So, with the third round of chemo under my belt and a three-week interval, I started preparations this weekend for round 4.  I attempted to drink 64 ounces of water each day, although that is challenging for me to do in the best of times, but more so in the winter.  I also sought out foods with more fiber, to help offset one of the more common side effects of chemo. Last night I prepared my bag of items to take along for the 7 hours or so I would be at the hospital, and Lydia gathered an array of snacks to keep us both satisfied.

My lab work was scheduled for 9:45, which is a couple of hours later than it has been.  It was nice to have a more leisurely morning of it; getting up later, taking time over breakfast, checking e-mails and doing some other things on the computer before leaving at 9:20.  The only downside to the later start was that it meant getting out of the hospital in the very late afternoon and dealing with rush hour traffic.

The 7th floor of the cancer center was a hive of activity. There seemed to be more people there than usual, though perhaps it seemed that way only because I am often in with the doctor or having treatment by that time of the morning, and I don’t usually see the later morning crowds amassing.  First up, as always, was my lab work. The nurse made quick work of drawing blood, and then she left my port accessible for the chemotherapy later on.  I moved across the way to the doctor’s area, which was exceptionally crowded.  They were so busy that medical assistants were calling patients into the examination area to take vital signs and then sending them back out to the waiting area until a room was available.  Uncharacteristically, I was called in at 11:15, nearly an hour after my scheduled time.  After having my weight (up a pound or two) blood pressure (wonderfully low at 108/74 despite my use of salt), pulse, oxygen level and temperature taken and recorded in the computer system, I waited in the wings for a room.  My chemo was supposed to start at 11:30, so I knew that even if I had only a short visit with the doctor, we were doomed to a later treatment start and finish than anticipated.  They were so busy that I also expected a long delay in the treatment center while waiting for the pharmacy to process all the orders for treatments.

Finally a room opened up and I expected that I would see the very punctual doctor almost immediately.  Not so, this time.  We waited and waited and had a snack of almonds and then a banana to stave off hunger -- it was nearly lunchtime.  Finally, a knock on the door, and in came the doctor.  Only it wasn’t my doctor.  It was a fellow, who introduced himself and said he was working with my doctor.  Now this is a teaching hospital, and I am used to all sorts of medical students and residents accompanying my doctor during our visits, but this was the first time that another doctor came along and saw me first.  And he came bearing news I didn’t want to hear:  I couldn’t have chemo today after all.  Not because of delays and overcrowding, but because of my own blood work!  The platelet level in my blood was too low for treatment.  If you are like me and are a little rusty on the role of different elements of your blood, platelets are important because their function is to prevent bleeding.  Normal platelets levels are in the range of 140,000 to 440,000 per microliter of blood.  My reading was 68, or 68,000/mcL.  The threshold for chemotherapy is 75,000/mcL and above.  My reaction to this was an out loud “oh, crap!”  Not because I was scared, because I wasn’t -- they can provide you with more platelets through a transfusion if your numbers get way too low.   My “oh crap” was uttered with a great sense of disappointment because I really truly wanted to have my chemotherapy today in order to stay on schedule and be done with my treatments on February 21st as planned. 

Unfortunately, there was not a thing I could do to change what was, and wanting it wasn’t going to make it happen.  Instead, I was examined by the fellow and then was left in the exam room while he tracked down my doctor and they consulted with the study coordinators to see whether the study protocol was for me to get my weekly infusion of herceptin or to just go home.  In the end, I was given a pass, so we packed up all our bags full of books and puzzles, knitting, a laptop, lunch and snacks and made our way out to the car, then home where we ate our picnic lunch instead of in the treatment center.  Now I am slated to go back in next Monday, and, if my platelet counts are back up above 75, I’ll be good to go for a postponed round 4.  I can’t wait.  Really, I mean it!