Storm Warnings

Friday at noon:

We're huddled in the laundry room in the the basement, television news on loudly in the next room, waiting for a powerful storm to pass. Heavy rains and strong winds have just hit and the sky is dark. Upstairs the weather radio is sounding its alarm, and the neighborhood tornado sirens are blaring.  Tornados have been seen on the ground thirty minutes to the west of us and a two-story house out that way collapsed.  

What a contrast to our winter wonderland of Christmas day!  The snow melted away earlier in the week, and we've gone from white to brown and muddy.  We've had an unusual warmup, and today, the last day of the year and ten days into winter, the temperature is 61 degrees.  As our next cold front marches this way, things started to get active at 2:30 in the morning when the weather radio alarm first went off announcing a severe thunderstorm watch. It has sounded several times since as new watches and then warnings have been issued.  

1:00 p.m.

The worst of the storm has passed and though there is some debris on the ground, we have managed to escape fairly unscathed.  A couple of boards turned up in the yard from who knows where and some large pieces of cardboard managed to land high up in a couple of large trees next door!  Also a piece of someone's aluminum siding.  Ominous.

4:30 p.m.

I went to work for a couple of hours where I heard that there were some major roads closed near where I live.  On the way home, I drove through a busy section of road with no working traffic lights and I heard on the radio that 20+ properties in the community next to mine suffered some severe damage -- or were demolished!  When I got home I turned on the TV to see images  of cars turned on their sides, and a residential area that is pretty well flattened.  There's damage in my town, but not as severe.  Miraculously, no one in the local area was injured, although there were some deaths further west in Missouri and in Arkansas.

So unusual for December, and a little too close for comfort.  What a finish to one year, and for some local people, a rough start to the new one.

Winter Wonderland

Christmas 2010

Woods behind the house

Christmas brought some lovely presents: a beautiful soft snowfall starting on Christmas Eve day; some lovely birds at the feeders and yard – yellow-bellied sapsucker, white-breasted nuthatches, cardinals galore, and two brown creepers, among others; and two amazing passersby – coyotes in the early afternoon - new visitors to the yard.  The images are poor, but they were two of the most beautiful specimens I have ever seen.  What a special treat for a lovely low-key holiday spent nestled in at home!

Halfway Home – Round 3

I awoke at 6:20 Monday morning and lay in bed for just a few minutes listening to NPR’s Morning Edition. I was pleased to hear Linda Wertheimer’s voice and realized that she was playing host. Hooray, she’s back, at least temporarily. (No disrespect to Renee Montagne who is very good, but I am a huge fan of the trio of great women reporters from the early days of NPR:  Linda Wertheimer, Cokie Roberts and Susan Stamberg. It’s sort of like going home again!)  After indulging in that pleasure for a few minutes and catching the morning news at 6:30, I got out of bed to appease the intently staring Sam (he is part border collie, after all). I put on my slippers and let him out into the near darkness, on one of the shortest days of the year.  I prepared both Henry’s (the whining cat’s) breakfast and Sam’s and then let him Sam back in to wolf it down in 15 seconds flat.  That can’t be very satisfying and could explain why he has become such a beggar of late.

Then back to my room to find something to wear that would be comfortable for the relatively long day at the Cancer Center.  Some stretchy black pants that are frayed around the edges, but are too warm and comfy to even consider pitching; a fleece top with buttons down to the middle of the chest, making access to the port easy for the nurses; another layer of fleece, because it is sometimes cool in the treatment pods; and, of course, a hat or head scarf.  After trying on several, I opted for the oatmeal crocheted cloche, which was apparently a good choice, because several people in the treatment pod asked me about it.  At least, I assumed, perhaps incorrectly, that by asking they were signaling their approval!

Then I moved into the bathroom where I applied some makeup to liven my face up a bit.  I had a quick bite and then Lydia, my chauffeur and chemo buddy, and I left here around 7:30.  Despite it being a busy time of day for commuters, we were at the hospital in 15 minutes and I signed in for lab work right away.  When I was paged I went in and met up with one of the nurses, who deftly accessed my port (read: stuck me with a needle with lots of clear tubing attached), took several vials of my blood and then taped the needle and line so it was ready for use during chemotherapy. 

From there it was off to see the doctor for an 8:40 appointment, during which we chatted about my side effects and the results of my blood work.  As expected some of my counts are low, but not nearly low enough to be of concern.  She did suggest I might want to eat some red meat to boost my hemoglobin a bit.  Although we don’t eat a lot of red meat, quite by chance we had already planned to have hamburgers for dinner that night.  Now I can say that the doctor prescribed it.  I like my doctor a lot.  She is extremely competent as well as very patient and pleasant and she giggles at my jokes and comments.  I hope that is a good thing!

From there it was back to the treatment center.  I signed in at the desk, remembered to get my free parking garage pass, and took my pager and waited.  My appointment was scheduled for 9:30 and I was called in at about 9:40.  We were escorted back to pod 3, where the medical assistant took all the standard readings, and then offered me that most wonderful treat of all – a warmed blanket.  She also brought a pillow and a can of cranberry juice, and I didn’t have to pay extra for any of it.  It’s not like flying these days. 

The nurse of the day came by and checked on me, after which the next wait began.  I have learned that despite the attentiveness of the pod staff, the backlog at the pharmacy is what holds things up.  There are too many cancer patients on any given day for them to process all the medications at once.  Fortunately, my pod mates were a friendly group and for the first time I really interacted with the other patients and their companions.  We got involved in helping the man across the way with his crossword puzzle, providing words like pap, and milksop, latkes and halvah.  With my handy iPod Touch and the hospital’s guest WiFi service, I was able to look up and share the definitions of some words with which he was unfamiliar.  He was in his mid-50s and was there with his elderly father as his companion, which I found so very touching.  There was a husband and wife, and a daughter with her elderly mother.  We talked at length about my hat and others they had made or seen.  Then a man came in and took a chair next to me.  Once he was settled in he turned on a little TV that is available on a swivel arm each lounge chair.  He did hot have headphones and, apparently, not such great hearing, because he turned up the volume quite a bit.  That and the fact that the medicines were ready seemed to put an end to the friendly chatter.  By 10:30 we were underway.  There were a few adjustments to my infusion, some of which were made by the doctor that morning and some that were expected changes in protocol.  Most everything goes in one at a time, so the lineup was:

1.    Saline

2.    Dexamethasone – a steroid to help control some reactions to the chemo.

3.    Pepcid – a surprise, but I have apparently been getting that each time and just didn’t know it.  It has certain antihistamine properties.

4.    Benadryl – again to fight off any allergic reactions to the chemo drugs.  During round 2 it gave me a major case of restless leg syndrome, so the doctor decided to cut that in half this time.

5.    Lorazepam – to relax my muscles and thereby reduce the risk of restless leg syndrome.

At that point, 4 and 5 combined to knock me out for 2 whole hours, so I am guessing from past experience on the rest of the lineup:

6.    Emend – an anti-nausea drug I previously had to buy at the pharmacy in pill form for about $370 and take by mouth on days 1, 2 and 3.  My cancer center has now switched its protocol so that it is administered in IV form, and that releases me from having to purchase pills to take at home.  Yay!!!

7.    Some other anti-nausea drugs, which I can’t name at this point.  Maybe I’ll stay awake long enough next time to ask.

The actual chemotherapy drugs:

8.    Taxotere for 1 hour.

9.    Carboplatin for ½ hour.

Last up for the final infusion of the day was the monoclonal antibody for my HER2+ status that I have to have for a full year.  It prevents the HER2 receptors in cell membranes from causing any cancer cells that might crop up from reproducing willy-nilly.

10.    Herceptin for ½ hour.

Then when the infusion is done, and most of the lines are disconnected, just before the needle is removed from the port I was given the usual nightcap:

11.    A final syringe of saline to clear the port

12.    A syringe of Heparin to prevent clots from occurring in the port.

In the midst of all this, I awoke at 1:30 to find that two people had left the pod while I was out, and three new ones had moved in for the second shift.  Lydia was there and kindly fished out a turkey sandwich from her loaded backpack for me to eat.  She is such a good chemo companion, filling her pack with things I might need or want as she sits for seven or eight hours each time, without the benefit of a Benadryl induced sleep! 

We were done at 3:00 and home by 3:30.  Still a bit groggy from the Benadryl/Lorazepam combination, I took another nap, but not before a couple of hugs and the acknowledgement that I am halfway done with this part of my treatment.  3 down, and 3 to go!

Looking Good and Feeling Better

I attended a program at the hospital last week called “Look Good, Feel Better,” which is sponsored by the American Cancer Society. The program is free of charge to cancer patients and is held at hospitals all over the county.  They are offered through the cancer resource center at my cancer center. The people who run these sessions are professional aestheticians who volunteer their time to help cancer patients dealing with hair loss and the skin changes associated with chemo. The goal is to look help us look our best and feel better and more confident about ourselves as we go through this not so flattering period. The volunteers give two hours of their time to lead women through a whole makeup routine. The session starts with skin care, and includes the proper ways to apply concealer, foundation and blush, how to accentuate the eyes with liner, shadow and mascara, and, if necessary, how to pencil in eyebrows. They even show you how to make an easy to head wrap. 

I arrived an hour late, because my weekly half hour infusion got off to an incredibly slow start. Fortunately they were kind enough to let me join the group despite missing the first half of the program.  The leader was gracious and didn't seem at all put out at all by the addition of a latecomer. She quickly got me oriented and moved me along the list of things to practice until I was nearly caught up to the rest of the group. First stop was concealer to hide any darkness under the eyes.  Next, foundation for making the skin tone even, then powder and blush. From there we went to the eyes. I was encouraged to use more eyeliner than I usually do, and it actually looked decent and not too overpowering. Then I put on a little bit of mascara, which I don’t often use, but it really is helpful with thinning eyelashes. Next should have been the drawing of eyebrows, but the instructor took one look at mine and said that we didn’t need to worry about drawing mine in.  She even suggested, very politely, that I might want to get my eyebrows shaped for better effect, by having a professional wax!  She was correct -- they have gotten a little bushy and out of hand. I haven’t touched them in ages, anticipating losing my brows, but they haven’t shown signs of giving up yet. Although I have since done a little plucking, I’m encouraging those parts of my eyebrows that I left in place to stay strong and hang in there, literally, for duration of my treatment.  That seems much easier than my trying to draw them on!  We’ll see how much my luck holds.  

She finished up the session by showing us how to make a great turban from the bottom half of a tee shirt.  It's a pretty amazing trick, and looked great on her models.  The only problem, from my perspecive was that her sample tee shirt was brightly patterned and quite pretty. Mine are generally plain, one color or at most, stripped.  I don't think they'd work to the same good effect.  

Our instructor was great and very attentive to the dozen or so individuals who were in the class.  But I have to admit that, like a kid in a candy shop, one of the best things about “Look Good, Feel Better” was that we were each given a whole bag of makeup to experiment with during the class, and then got to take it all home. All of this is made possible thanks to the generosity of companies like American Beauty, Aveda, Avon, Chanel, Dove, Estee Lauder, Lancome, L’Oreal, Mary Kay, Maybelline, Origins and Shiseido – each of which was represented in my bag of goodies, although I know other companies contribute as well. 

It was great to be in room full of women, all trying to do their best to look and feel as normal and good as possible, while going through some strange changes to our bodies. What a great program!  My sincere thanks to the ACS, the cancer center and the wonderful volunteers who put on these session. I hope my efforts will make them proud!

What to Wear?

Getting dressed to leave the house has taken on a whole new dimension now that I have lost my hair.  (Although whether I have lost my hair is a debatable point, as I still have a scalp full of stubble.)

I have well over a dozen beautiful scarves hanging in my closet. They are from my days as a manager when I dressed a good bit more professionally than I need to now. Some of them even carry names like Ralph Lauren and Oscar de la Renta, although my sources tended to be places like TJMaxx and Syms. The trouble is that I favored long narrow scarves then, which I am sure can somehow be wrapped into headwear, but I have not yet scoured the videos on YouTube to find out how to do something so elaborate.  And I’m not sure I have the stamina to pull that off.  I should have been toning my upper arms for a year or two in preparation for raising them in the air for long periods of time as I wrap turbans around my crown!

I do have a couple of square scarves and some old bandanas, but I have discovered that the bandanas are way too small to do the job adequately.  Heaven knows, the last thing I want to do is to freak out some poor unsuspecting soul when I’m out in public and a headpiece slips off, exposing my chemotherapy-induced bare head.  A frightening and embarrassing thought! 

So here it is, the beginning of winter, and a very cold one at that, and I have only a couple of square scarves large enough to do the trick.  I have tried to shop for more – nothing fancy, but ‘tis not the season for that kind of scarf.  All I found were winter scarves and a few lighter weight, but long, narrow ones.

On this front, I have benefitted from the kindness of friends and strangers. I reconnected with an old college friend, Pip, on Facebook, where I discovered that she had been treated for breast cancer. Although she was fortunate enough to avoid chemo, her mother was not, and the minute she heard I’d be going through chemotherapy, Pip sent me a lovely soft sleeping cap of the type her mother had loved for keeping her bare head warm at night.

I visited the cancer resource center at my hospital and found that, as a cancer patient, I was entitled to a free turban or cap, as well as a wealth of great informational resources.  I selected another cozy looking cap. I went to the American Cancer Society office, because they also help with wigs and headwear. Although I didn’t find an appropriate wig, I did find a lovely textured oatmeal crocheted cloche, which I like a lot and feel comfortable wearing out in public.  Again, this was a freebie for which I am most grateful. 

Although I don’t spend a lot of time combing all the amazing resources for breast cancer that are online, I did come across the fact that there are a couple of sources that supply women dealing with hair loss with a free scarf or turban.  I wrote to two of them and they both kindly agreed to my request.  One of them is the Gaila Fund for Women with Cancer, a not-for-profit organization that provides women with cancer with hats, based on an African headdress, the gele.  Their web site is www.gailafund.org.  Their hats are very stylish and I consider them to be more for dressing up. They are definitely not for hanging around the house – or at least, my house! 

The other company is actually a for-profit company that donates free head wraps and scarves to woman dealing with hair loss.  France Luxe has the Good Wishes program. If you qualify you get to choose one of their lovely patterns and they’ll make a head wrap just for you. These are not inexpensive items, and it is quite a treat to be able to select one for myself. Their web site is www.franceluxe.com.

In the meantime, I have bought some material to sew up for some more casual, everyday headscarves. Luckily, Lydia has a sewing machine and the know how to sew a straight line, unlike me!  I am also looking on line for patterns for knit or crocheted hats, similar to the cloche, which I can make.  But if you happen to feel inspired and want to whip up a scarf or knit or crochet a cap, let me know and I’ll happily supply the material or yarn.  Heaven knows that with a good four or more months before my hair grows out enough for me to shed scarves and hats, I could really use a larger selection of options to clothe my balding pate!   

To Buzz or Not to Buzz…

Despite my initial thought prior to chemotherapy that I would want to shave my hair off the minute it started to fall out, and then the surprising pendulum swing the other way when I felt that it was not as upsetting as I had imagined, I finally gave in on Wednesday night and went for the big buzz.

I was growing a little weary of shedding hair like a Labrador retriever. They, like deciduous evergreen trees, seem to shed small amounts of fur (or leaves) constantly, and that is what my hair was doing earlier in the week.  It wasn’t coming out in clumps, thank heavens, but I was tired of running a comb lightly through my hair and seeing the fallout in the sink. 

After laying newspaper on the bathroom floor and setting up a kitchen stool, Lydia kindly took scissors to my already fairly short hair and cut it down to about an inch.  I always wondered what I would look like with a spike cut, but never had the guts to try it.  Now I know.  Are you ready?

Then she got out the borrowed clippers and started to shave away.  I was a bit nervous about the process, even though I knew cutting my skin was not apt to happen.  What I didn’t anticipate was that I would be left with a head full of stubble – and lots of it.  My hair really must be strong, because I thought that once I was shaved it would all finish falling out quickly.  Not so, but I’m not about to let anyone take a real razor to my head.

Here are a few things I have learned during this process:

1. Hair grows in different directions over different areas of your head, sometimes in swirls like a fingerprint, and each section has a grain.
2. It does NOT feel good to have someone swipe her hand over your buzz cut against the grain.  This actually sent what felt like little electric shocks all over my scalp. 
3. Sleeping on a cotton pillowcase with stubble is tricky.  The stubble catches in the cloth. Flannel is much easier. 
4. Lay your head gently on the pillow, or it will feel like the stubble is being pressed into the scalp, which is actually rather uncomfortable!
5. Much to my surprise, I have a pretty decently shaped head, which makes wearing scarves and hats so much nicer.  I also have a wig for special occasions, but still have some sorting out to do with it. (Sorry, no pictures to share of the total bare head – I don’t think I’m that brave, nor do I want to freak anyone out!)

Otherwise, things are going pretty well.  I am once again at the seven-day point after chemo, and, as before, I have found that the weekend after chemo is when I’m not feeling my best – but it certainly could be a lot worse.  I am so lucky to be having this treatment in the time of medications that help counteract the nastiest of side effects. There are even some treatments out there to prevent hair loss, but I’m just happy not to have to grapple with nausea!  So hair, finish falling out if you will, and we’ll see what the new spring growth brings and whether I adopt some very short cut for the long term.

Round 2 – The Lay of the Land

The seventh floor of the Center for Advanced Medicine features a large open area in the center of building, ringed by the offices of the medical oncologists on one side and the cancer treatment center, lab and pharmacy on the other.  There is a large sitting area, comfortably arranged, and often very crowded, especially later in the morning.  Although it was fairly quiet Monday morning at 8:00, it can often be like Grand Central Station at rush hour.  There are generally pairs of people, one of whom is there for treatment and a spouse, significant other, child or friend there for support. It is often hard to tell one from the other, but in some cases it is clearer: the woman wearing a head covering – hat, scarf or turban, or the man in the wheelchair or walker or carrying a tank of oxygen, or occasionally someone who is obviously not well. 

The unusually uncrowded waiting area

The cancer center has made an effort to make this space friendly.  There are several tables along the edges set up with partly done jigsaw puzzles or chess sets.  There are library carts with books to borrow and magazines of all kinds are placed throughout the area.  They also provide free coffee and hot chocolate from machines that are impressively fancy. 

When you enter the area you sign in at one of two reception desks and receive an electronic pager, such as you might get at a restaurant while waiting for a table. Then most people, myself included, just sit and wait their turns, conversing quietly with a companion, reading, or just watching the world go by.  While most of the group appears to have mastered the etiquette of communication in public spaces, others seem to be completely oblivious.   Occasionally there is a thoughtless person among the crowd who talks too loudly on a cell phone or entertains his or her companions with loud tales of little interest to the rest of us.  Fortunately, these people seem to be in the minority.

On Monday I went to labs first, where I had blood drawn through my port – this funny Frankenstein bump protruding from under my skin, just below my left collarbone.  From there it was across the way to see my doctor for a check and a chat about how things were going, side effects I had experienced and whether there needed to be any adjustments in treatment or follow-up to deal with some of the range of rolling side effects I’ve had.  Fortunately, none of my side effects were unbearable, though she made some minor tweaks in my post-treatment plan.  She was pleased with my status and most surprised to see me sporting my own hair, which had thinned but not enough to call it quits yet.  She said I had “strong” hair!

I was cleared for take-off, so back across I went to the treatment side of things where I signed in once again and got another pager, and waited my turn to be called in for chemotherapy.  I was scheduled for 9:30, and it wasn’t long after that before I was buzzed and then escorted to my “pod” where I had a choice of a bed or a reclining chair.  During my weekly “30 minute” infusion the week before, I had discovered that, although all the recliners are comfortable, there is one deluxe model scattered throughout the pods.  It was vacant on Monday morning, so I grabbed it and settled in.

The pod

Two nurses and an assistant are assigned to each pod with room for six patients.  The assistant does the initial check-in, taking blood pressure, oxygen levels and temperature – again.  It’s interesting to see how one’s BP can vary from hour to hour, as all of these readings were taken an hour before on the doctor’s side.  The change wasn’t dramatic from a medical standpoint, but both numbers were up just a touch.  Anxiety, perhaps?  Fortunately, I am blessed with healthy, low blood pressure, despite my love of salt!  After taking your numbers, the kind assistant provides little luxuries, such as warmed blankets (a favorite of mine), pillows, juices, sodas and snacks for the asking to both the patient and her companion. 

After a bit of settling in, an RN comes in and again checks to see how you’re feeling, whether you’re having any side effects, answering questions and providing tips and advice.  Although I had discussed these with the doctor, not everyone sees the doctor every week, and the RNs have an incredible wealth of knowledge and techniques to share.  They are on the chemotherapy front lines and have seen and heard it all.


Then the next wait begins.  There is a pharmacy based in the treatment center so they can dispense the drugs right there.  They don’t prepare your drugs until you are there, seated in your chair and have been checked and cleared.  The center is a very busy place, treating 160 patients on an average day and 200 on a busy one, so it takes some time for the medicines to be prepared, delivered to the pod, checked and rechecked before they start to administer the IV drips. We started at about 10:30. First in: some IV steroids and anti-nausea drugs to help with side effects, and IV Benadryl to battle any possible allergic reactions.  The Benadryl knocks me out for a bit, which is a lovely way to pass some of the time.  Then a one-hour drip of Taxotere, followed by thirty minutes of Carboplatin and finished off with a chaser of the weekly thirty minute dose of Herceptin.  

Hooked up and ready to go

At least that’s my mix – it varies from cancer to cancer and patient to patient.  When we’re all done they flush the port with saline and then inject some Heparin to keep blood from coagulating and clogging the port.  It is therefore primed and ready for its next use.  At 2:00 p.m. we were ready to head home, where still a bit dopey from the Benadryl, I promptly sank into my bed and took another nap!

It Never Rains, But It Pours

After months of extremely dry conditions, we have had an incredible amount of rain in the last three days.  Today, the day before Thanksgiving has been grey and wet.  Tonight, the rain is coming down in buckets and is accompanied by thunder and lightening as well.  At one point, the local tornado warning sirens went off.  After a few moments of debate the dog, cat, my housemate and I headed to the basement. We tuned in to a local TV station for an update and discovered, thankfully, that the weatherman didn’t understand why there were sirens going off in our county.  The real tornado warning was for locations two counties southwest of us.  I relaxed a bit upon hearing that news. It’s always unnerving to have the sirens go off, especially in the dark, but I found it particularly unsettling to hear them six days before the start of December.  Although there have been late fall and winter tornados in this region before, they are, thankfully, a rare occurrence.

In addition to long dry spells in the weather, I can go a very long time without an out-of-town visitor.  We may live in the city known as the Gateway to the West, but very few friends or family members pass through here.  Yet in the past two weeks, we have had three visitors: my brother and a couple of friends.  Robert came on Veterans’ Day. Kay, who used to live here, is a great friend and travel companion (Australia - 2000 and Spain - 2004).  She drove down from Chicago last Friday and spent the evening catching up with us, and we with her.  Another dear friend, Julie, took us totally by surprise, calling on Monday to say that she was in town and would love to drop by.  She came over for a couple of hours that very evening.  

It was great to see everyone, but I must say that, like the rain, I would love to spread these visits out a bit more evenly over the course of the year.  It may be months before another out-of-town friend turns up!  However, I can’t, or shouldn’t, complain.  It is far better to have three visits in short order than none at all.  On this, the eve of Thanksgiving, I’m grateful for both the needed rain and the longed-for friends and family who turn up from time to time!  

Aaahhh, That's Better!

What a difference a day makes!  I started to feel better yesterday after a bit of a shaky start.  I called Shannon, my nurse, and consulted with her on a number of issues.  She provided reassurance and gave me some good direction and advice.  With her backing, I finally gave in and took some over-the-counter meds to help ease some lingering discomfort.  I had also discovered my own little secret potion and sipped on a regular (yes, the real deal with sugar!) 7-Up.  Then, I took an hour-long nap in the late morning and awoke with enough energy to drive myself to the office for nearly 3 hours of work in the afternoon. 

Although I felt a bit other-worldly and like I was treading water in semi-solidified gelatin, I managed to put one foot in front of the other and was actually somewhat productive – although I do feel I need to double check what I did yesterday before feeling totally satisfied with that statement.  Although I had cut out most of my caffeine, Shannon said that I shouldn’t give it up altogether since my body was used to it and it might give me an energy boost.  I indulged in a mid-afternoon soda, which did seem to pick me up a bit more.  

I left work a little after 4:00 so I wouldn’t tire myself out too much, particularly since last night was the monthly meeting of my photography club.  I wanted to save some energy so I could attend long enough to hear the speaker, who is a friend of mine.  I was responsible for connecting her with the program committee, so I felt more than just an interest in her talk – I felt somewhat responsible to both parties.  An amateur astronomer, Ann gave a great talk on photographing the night skies and other interesting astronomical phenomenon and she was very well received.  I’m happy that I was up for it and made the effort to be there!

Although I’m feeling better, it still seems to take the whole of the morning for me to get up to a reasonable speed.  I woke up fairly early today, had a bit of tea and toast, actually rode the stationary bicycle for ten minutes – a pretty major accomplishment, and one the books say should beget more energy, had a soak in the tub, gently washed my hair (which is still in place), read e-mail and have worked on this piece.  Not a very ambitious series of events, but progress.  Now, fingers-crossed, and with some knocking on wood, I’m gearing up for another few hours in the office this afternoon.  So, off I go to fix a little lunch, gather my supplies and sally forth into the world of commerce.  

Round 1, Take 3

Okay, I spoke a little too soon.  Whether it was the running around with Robert on Friday, or the chemicals catching up with me, or eating the wrong sorts of things – or all of the above, I have to be honest and say that I have felt pretty puny since Saturday.  I had no energy over the weekend, little interest in food (but still no nausea, thank heavens), grumbly guts, and a general feeling of malaise.  My tongue is weird, and the pads on my hands are raw, and sensitive to hot water, like a burn.  I’m really not fond of feeling punky and listless, and am tired of sitting on my bum for 3 solid days.  It’s been a bit hard to get comfortable and I have little ability to concentrate on books, puzzles, or other pleasant distractions at the moment. 

So, in an effort to make the most of a less than ideal situation, I decided that a change of scene and substrate might do me some good.  I have moved operations from the couch in the living room to my bedroom.  It is on the southwest side of the house, and the sun is pouring in.  It’s bright and cheery with its Caribbean colors and artwork and, even though I have an aversion to being in bed unless I’m sleeping or am really sick, I’m just perching atop it, so it doesn’t really feel like a sick bed.  I have my laptop, some good pillows for sitting up, a warm throw with a cat on it – literally – and a dog nearby.  Although I don’t feel on top of the world, I’m settling in and discovering how to make myself as comfortable as possible. I think the switch, for now at least, may help relieve some of the tightness and achiness I’ve experienced over the past couple of days, when I was literally curled up, a little too tightly perhaps, on the couch.

As each day passes, I expect to get better at this, and hope that I'll have figured out the best way to cope with all these little nuisances by the time all six rounds of chemotherapy are over!  In the meantime, I remind myself that things could be a lot worse.  I must admit that I am most grateful that they are not!

The Recovery Room

Round 1 Follow-up

On Tuesday, I had to go back to the hospital for a shot of Neulasta, an immunity booster. Because the chemo tends to kill off all quickly dividing cells throughout the body, it affects the production of red and white blood cells as well. The white blood cells are the ones that fight infection and the Neulasta stimulates the production of a particularly important white blood cell for chemo patients. Originally the doctor had discussed my taking the shot home with me and giving it to myself on the day after chemo. The glitch, however, is that it is a $6,000 shot and insurance companies are not too keen on sending patients out with a prescription of that value. Although I could have had the prescription filled and taken it at home anyway, as I had planned to do, we discovered on Monday that it would have cost me a $3,700 a dose co-pay! So, it was without hesitation, and only some minor inconvenience and extra time that I decided to let the pros give me the shot in the treatment center. (In the arm, actually – at the treatment center!)

Thankfully, my side effects are pretty minimal. I am tired but not to the point of constantly lounging on the couch. Thankfully, the anti-nausea drugs are doing their work and I haven’t felt ill. Now that the Neulasta is kicking in, I am experiencing some bone ache, a fairly common side effect, for which I take Tylenol. So all in all, thus far, I’m doing pretty well with the once dreaded chemotherapy.

I also have great support at the moment. My trusty sidekick, Lydia, has been wonderful, and my brother, Robert, flew in yesterday afternoon to check in on me. He will be here for a few days and I hope to muster up the energy to show him a bit of this city, even if it’s only from the inside of the car. It’s great to have him here, although, of course, I wish I could have coaxed him to the land-locked Midwest under different circumstances!

Round 1

Monday was a busy day. It was my first day of chemotherapy and I was at the hospital for 11 hours! Way longer than I expected. I started at 8 a.m. with a blood draw on the 7th floor. They took 11 tubes of my blood – some for the regular blood panels and 8 extras because I’m participating in a study. Then it was down to the 3rd floor to Interventional Radiology for the port insertion, surgery performed under radiology imagery, using a local anesthesia and what is called conscious sedation. I was lucid throughout but relaxed, and I didn’t feel much as they put a quarter-sized drum, the port, under the skin of my chest and threaded a catheter between it and my jugular vein. With a port they can easily draw blood and infuse chemotherapy drugs without having to stick different veins each time. 

When I was finished there, it was back up to the 7th floor, where I met with my medical oncologist at 11:30 and then signed in across the hall at the cancer treatment center at 12:30. After a tour of the facility, we (my trusty best friend and I) sat through a 30-minute orientation before being shown to the “pod” where I was to get my chemo. The pod consists of 8 or so big reclining chairs and a couple of beds, where patients get their infusions. Clinical, but comfortable enough.

What I didn't expect was to get a 2 p.m. start on a chemo scheduled for 12:30. Next time there won’t be an orientation, and now I know to expect that the four and a half hour chemo infusion involves some additional front end time for the preparation of the medications, especially considering the astounding volume of patients they see on a daily basis. Although the chemo took a long time, it was not painful or disturbing in any way. Throughout the treatment, two nurses attend to the eight patients in the pod and are kept very busy. There are additional assistants and all of them gladly provide warm blankets, snacks and drinks as needed. One of the infusions had a good dose of Benadryl in it, so I spent a good bit of the time dozing blissfully. As the afternoon wore on, one after another of my pod mates finished up and left the area. Finally, a little after 7 p.m., we were the last to leave our pod and headed on our merry way, no worse for wear. Below is a view from the 7th floor in the late afternoon.

Time

Last night we switched the clocks back an hour, but someone forgot to tell the pets.  At 5:40 they started their usual morning assault.  I am their target – they seem to have learned to leave their other human alone.  Henry started off, meowing quietly at first from the safety of the hallway.  Sam, a 60-pound border collie mix, paced back and forth like a child needing to use the bathroom, toenails clicking persistently on the wooden floors.  I froze, remaining as still as could be in my bed, trying not to give any sign that I was aware of them.  One slight shift gave me away and they were both up on my bed, Henry forgetting about the threat of a spritz of water.  I got them to settle for a bit, but after 10 minutes, Henry started to walk across the pillows and onto the dresser and I knew it wouldn’t stop until I got up and let Sam out and gave them both a treat to hold them for a bit.  How to reset their clocks?  You would think I’d remember from year to year, but I don’t. 

So here I am, sitting in bed, wide-awake, pondering time.  Time has been moving at different speeds these past few months.  In August when the doctor discovered a lump in my breast, things moved at warp speed all the way up through my surgery in September.  Since then I have experienced the slow pace of waiting for results and appointments with new doctors to chart the course of further treatment.  The nearly 3 weeks since then have gone at a snail’s pace. 

I have had plenty of time to prepare, if anyone can really prepare, for chemotherapy.  I have spoken with people who have gone through it before me and, if nothing else, I have really learned this lesson: all breast cancers are NOT alike.  We hear so much about the stage of a cancer, but there are so many other elements to a diagnosis.  Just one factor, such as being HER2 positive, can totally separate you from those who share all the other aspects of your diagnosis.

When I was at the hospital last week for tests, I visited the resource center and picked up some very helpful literature on treatment and nutrition. I have been on the phone with my sister, who is a nurse, and on the Internet researching ports (unfortunately not fortified wines, but those quarter-sized objects that are inserted under the skin so you don’t have to have your veins constantly poked for chemo and taking blood).  I have read up on tips for coping with chemo, and discovered, not surprisingly, that everyone reacts differently to their treatment.  Another lesson learned: there is no universal truth about how one will respond to treatment.    

I have gone to a wig shop to investigate my options once I lose my hair. They suggested I ask my insurance company whether they would cover a “cranial prosthesis”.  I did.  My insurance company does not cover the cost of wigs, because it is not mandated by my state.  (Topic for another time: why should an American citizen living in one state have such different rights from citizens living in other states?)

I have gone through ups and downs over these three long weeks.  The downs: losing Maya; experiencing a major case of nerves about chemo; waiting for a free flu shot for nearly an hour at the county health clinic, only to run out of time before they could see me and other minor inconveniences.  The ups: getting my hair chopped very short and liking it, meeting up with friends for lunch, coffee and a movie; being taken out to dinner on Friday night by my dearest friend and having one of the best meals I can remember – lamb shoulder slowly braised with marjoram, fennel and honey, tossed with caramelized onions, wild shitake mushrooms and pappardelle noodles; and best of all, learning that my brother will fly here on Thursday to be with me.

And today, the day before chemo begins, there will be literal ups and downs. I am headed up on the roof to clean the gutters and safely back down when I’m done. I’ll take a quick look at a photography exhibit on frost flowers at the botanical garden, and tonight it’s off to the theater to see Kathleen Turner on stage in the play “High”.  So although I’ve gotten an earlier than hoped for start this morning, thanks to Sam and Henry, I have the feeling that this day will fly by. 

Then it will be the long anticipated tomorrow – a day that is also chock-full, this time with blood work at 8, port insertion at 9, seeing the doctor at 11:20 and finally facing chemotherapy at 12:30.  I hope to stare it in the eye, and let it know that it is not going to get the better of me! 

Maya

Sadly, I have to report that Maya died on Monday night, nearly six months after being diagnosed with nasal cancer. She had a good last day, and surprised me by chasing the frisbee more energetically than she had the previous few days.  Admittedly it was much cooler on Monday than over the weekend, so I shouldn't read too much into her enthusiasm for her last round of exercise.  As always, she wolfed down her dinner, and was her usual bossy self.  She never hesitated to let us know what she wanted and she had a built in clock that caused her to pester us at 10 p.m. each night so she could have one last outing for the evening and get her biscuits before going to bed.  If we lingered too long watching the news, she would speak out with her insistent one note bark.  Ignore her for a few minutes and she would let out another, and another, until the sharpness of her tone could not be ignored.

She had had a couple of minor nosebleeds the last few days, which were easily stopped with a dose of medicine squirted up her nostril. Not something any of us, particularly Maya, enjoyed, but it worked.  Nosebleeds are a common problem with nasal cancer and we had been lucky, with only one major bleed in the spring.  Just after 10 on Monday night, we noticed a little blood, and quickly gave her the medicine, but it didn't do the trick this time. We bundled her into the car and took her the vet's office.  The vet on duty was kind and comforting and so very sweet with Maya.  She was also wonderfully honest about the situation.  It helped that we knew going in there what we needed to do.  It didn't take long and was very peaceful, but I have to admit that it broke my heart to let her go.  She was a great companion and I loved that she had such a strong, determined personality. That was the cattle dog in her. I will miss her more than I can ever say.  May she rest in peace.

I Never Trained for a Marathon!

As we begin phase 2 of my treatment, I have to admit that I am suffering from a case of doctor visit fatigue.  I spent three and a half hours at the medical oncologists’ office on Tuesday, and another two at the radiation oncologist’s on Thursday.  I liked both doctors very much, and each was excellent at explaining my options, answering my long lists of questions, and making me feel as though they had all the time in the world to spend with me.  They were both delightful and had good senses of humor – something I always find helpful!  But after a bit my head was swimming with all the information and I was too tired after Thursday’s visit to write about it, although what I heard that day was not that complicated – at least compared to Tuesday’s round of information.  Instead I took it easy, and yesterday afternoon and evening I even indulged in stretching out on the couch and watching a couple of movies.  (My Life as a Dog and The Big Lebowski – an odd mix, I know, but both good in their own ways.)

Here’s the summary of the plan for phases 2, 3 and beyond:

Next Wednesday I go in for tests and lab work – blood work, an EKG and something called a MUGA scan.  Both the EKG and the MUGA scan look at the heart.  The EKG measures the electrical activity of the heart – or its rhythm.  The MUGA scan uses a radioactive substance injected into the bloodstream to take images of the heart in action.  It allows the doctors to evaluate the state of the heart’s ventricles.  Herceptin, which I will take because my cancer cells were HER2 positive, has a rare potential to cause heart damage. Fortunately this damage is reversible. The baseline MUGA scan of my heart function will allow them to keep an eye on my heart health throughout the yearlong treatment with herceptin.  I will have the scan again several times during the year.

 

I start chemotherapy on November 8th.  That morning they will insert a port under my skin so they don’t have to constantly stick needles into my veins.  This is a good thing, since I’m not always an easy “stick”.  I gave up donating blood years ago because it would take 45 minutes for them to get from me what others gave in 15!  After the port is in I will start the first of six treatments.  I will receive chemo once every three weeks, and, if all goes according to plan, I will receive my last treatment on February 21st.

Phase 3, radiation therapy, starts about 3 weeks after I’m done with chemo.  I will undergo six weeks of radiation and will receive it five days each week, Monday through Friday.  More on that when we get closer.

After that, I will continue on with Herceptin infusions into November, and will take the aromatase inhibitors to block estrogen and progesterone for five years.

Tiring just to read about it, isn’t it?  I started out with what I thought, based upon my early results, might be a short jog.  But now it has turned into something more like a marathon!    

Better Living Through Chemicals (aka the results from my visit with the medical oncologist)

Considering that I have cancer, the news since diagnosis has been relatively good: stage 1, no spread to the lymph nodes and the cancer cells were estrogen and progesterone receptor positive. (That may not sound good to you, but it is in a targeted treatment sort of way). The standard course of treatment for all of that would be radiation and hormone therapy for five years. Not too bad. 

The only wrench in my diagnosis was that I was three for three on the receptor front.  I also tested positive for another receptor called HER2 – the human epidermal growth factor receptor 2.  When HER2 is overproduced it promotes the growth of cancer cells.  It does not respond to the hormone therapy -- or radiation, for that matter.  HER2 positive cancer requires a more aggressive treatment.  So, despite much wishful thinking, I will be joining the ranks of those bound for chemotherapy.  The downsides are fatigue and hair loss.  The upsides, besides helping to keep further cancer at bay, are that they have much better drugs to combat nausea than they used to and I will save money for at least four months, probably more, since I will not need to pay for haircuts.  There is almost always some silver lining, if you look hard enough! 

I’m off to the radiation oncologist tomorrow, and will report on that visit, although radiation therapy won’t happen until the standard course of chemo is completed.

Form and Function

I have to admit that I am tired of filling out forms.  I spent a good part of the weekend working on a form for financial assistance (I have a high deductible) and two sets of forms on my medical history – one for the medical oncologist and another for the radiation oncologist. Two different forms asking for the same sorts of information in two totally different formats, but for two doctors from the same cancer center at an otherwise up-to-date, technologically advanced facility.  I believe that makes these the third and fourth set of forms I have filled out on my medical history since late August for offices that are just several floors apart.  What’s wrong with this picture?  

The White Throats are Coming!

My life isn’t all about breast cancer these days (although I do now have an appointment with the medical oncologist on the 19th). There are other things going on: work – both my consulting work and my part-time job; putting together the monthly photography group newsletter (due to the printers by Monday morning); theater (the local Rep); my neighbor’s 88th birthday celebration (Sunday afternoon); the welcome return of some favorite television shows (The Good Wife, Grey’s Anatomy, Modern Family) and phenology, to name a few. Yes, phenology. And no, it’s not some obscure condition I caught in my travels. 

Phenology is the study of seasonal change and the natural events related to it. It is about the signs of the seasons, or the timing of things like bird and butterfly migration and when certain plants flower from year to year. So, as a person with an interest in phenology, I watch for the arrival of the first monarch butterflies in the spring and when the juncos appear in the fall. I try to notice the last time I see our ruby-throated hummingbirds in autumn before they head for the tropics, or the last of the monarchs before they make their way to a remote location in the mountains of Mexico where they overwinter. It's harder to notice the last of something than a first appearance! I saw a hummingbird and a monarch yesterday – will I see others yet this fall? (Yes – I saw a hummingbird darting about near the feeder moments ago.)

There are organizations that collect data from citizen scientists like me on these seasonal events. One is Journey North, which monitors the movements and life cycle stages of many different organisms. Another is Monarch Watch, which tracks monarch migration and even has a monarch-tagging program. Just a couple of weekends ago we netted and tagged seven monarchs in our backyard!  

One event I look forward to each year is the arrival of the white throats. White-throated sparrows arrive in the fall and overwinter here before returning to their breeding grounds, mostly in Canada, in the spring. Generally I hear them before I see them, and I thought I heard a snippet of one's song, “poor sam pea-bod-y”, on Wednesday. That seemed awfully early. I checked my calendar to see if I had recorded their arrival last year, and I had noted it on October 29th. But then, on Thursday, there it was again – and again, and again – and I heard many a “chink”, the soft call they make as they search about the ground for seeds. So the question is, are they early this year or did I fail to notice them when they first arrived last year? Natural events such as these tend to be a bit more regular than not, so I doubt that there would be such a large discrepancy between their arrival dates from one year to another. This citizen scientist may not be as observant or as diligent about keeping records as she ought to be! I’m sure I can go to other sources and find out. MOBIRDS is the site where birders across the state share their sightings.

Now the next question is: when will the true snowbirds arrive – the dark-eyed juncos? In 2008, they showed up in the yard on November 10th. When will it be this year? Any bets?

Half The Wait Is Over

Yesterday morning I finally got one of the two calls I have been waiting for.  Of course, it came when I was in the shower.  I emerged to find a message from the radiation oncologist's office, calling to schedule an appointment. I called back immediately and got the scheduler's voice mail.  Argh.  I was anxious to get this appointment on the books, and feared we would play a continuing game of phone tag. I was preparing to go to work, so I left both my home and cell numbers and my schedule, hoping to insure a connection.  However, in my recent experience I have found that no matter how many phone numbers I leave, people making appointments tend to use the first one they were given.  So, in a somewhat pessimistic frame of mind, I was sure we would continue to miss one another.  Fortunately I was wrong.  A nice bubbly young woman called back before I left the house. We set an appointment for October 21st.  She was most apologetic that it wasn't sooner and explained that they are completely booked until then.  This seems in keeping with the fact that more than a few people have told me that several friends and acquaintances have been diagnosed with breast cancer recently. One person told me that I was the fifth person she knew of to be diagnosed within a month of one another. It seems to be an epidemic.

There was a lot of noise in the background when I spoke with the scheduler, including two interruptions of cheers and applause. She explained that the cheers were for patients receiving their last rounds of radiation treatment, and they were joined by friends and family to celebrate the event.  Although that's not my style, it was heartwarming to hear.  Also, encouraging to see the light at the end of the tunnel before I even enter it.  Now, if I would only get that call from the medical oncologist's office...  

Post-Op Update

I had my lumpectomy two weeks ago today, and went back to my surgeon this afternoon for a follow-up.  She reported that the grade, which was initially thought to be a 1 was upped to a 2, and the stage, which we expected to be a 2, was lowered to a 1. It may not sound great, but since the stage is more critical than the grade, this is actually a good thing!

On the other hand, although they successfully removed the entire tumor, and the lymph nodes and margins were clear, the pathology report indicates that the cancer cells were positive for estrogen and progesterone receptors. This was not totally unexpected.  Unfortunately, the pathology results were also positive for the HER2 receptor. If the HER2 had been negative, I could likely have gotten by with just having radiation and 5 years of taking hormone blockers.  The HER2 receptor has to be treated more aggressively, so I may have to have chemotherapy.

I have to admit that this news took me a bit by surprise.  I was growing more resigned to the idea of radiation - but was hoping to avoid chemo. I was feeling pretty optimistic about it, given my grade and stage. I may be able to do a modified chemo, without the usual side effects, but time, and the oncologists, will tell. 

The Ups and Downs of Voice Mail Messages

I cannot begin to count the number of times that I have left someone a phone message and apologized at the end of it for either rambling or for not being very clear – or both. Invariably my messages are longer than I would like them to be, in part because I usually dial the phone having given minimal thought to not reaching the intended party.  I don’t think ahead about how to distill what I want to express into a twitter length summary if I should get voice mail or an answering machine.  I envy those who are able to leave a message that is brief and to the point.   

Now, imagine being a cancer surgeon’s assistant and having to leave some longed for information on a patient’s voice mail. You don’t know anything about the patient’s household and whether the whole household has access to the message, so you try to walk a fine line between being informative without being too revealing. I suspect there are protocols in place if the news is not good. In that case, I imagine you leave a message asking the patient to call the doctor’s office at their earliest convenience.  But if the news is good, you may try to convey that, at least in a concise fashion.

A good while after receiving a voice mail message on Tuesday, indicating that my lymph nodes were free of cancer, it dawned on me that there was something else in the message from my doctor’s assistant that I didn’t quite catch.  I listened to the message several times and, although I thought the additional little snippet might mean something really good, I wasn’t quite sure.  The statement was quick:  “Everything was removed in surgery and your lymph nodes were negative.”  What was everything?  I had had a lump removed and two lymph nodes.  That was everything as far as I knew.  Yet, I wasn’t sure if the message was confirming that or saying something more. 

On Wednesday, I left a message for the assistant, asking for further clarification. I spoke directly with the assistant on Thursday morning.  She was most apologetic about not having been clearer.  She has only been in her job for a month, and I gather that a lot of this is new ground for her.  I don’t envy her having to make these sorts of calls in the first place.  I wouldn’t want to be the one to do it, especially if it involved delivering the bad news.  But in my case, it was indeed more good news.  Not only were the lymph nodes clear, the tumor margins were also clear, meaning they had successfully removed all of the cancer.  So they really did “get everything”!  I just could have used an additional word or two to help me catch that the first go round.

The lesson learned on my end:  I realize that I need to listen to important messages several times, whether concise or rambling, to be sure I catch even the subtlest hint of something that merits my attention.  As for my surgeon’s assistant, I suspect that time, and too many opportunities for practice will make her a pro before long.