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!