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!

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!

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.

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.

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. 

Save the date!

It's true what they say. Waiting is the hardest part -- at least so far. Although I received my MRI results on Friday and today is only Wednesday (and Monday was a holiday), it has felt like an eternity since then as I have waited to hear about a date for surgery. The wait is now over.  I am scheduled for surgery on Monday, the 13th.  Now, suddenly that feels as though it is coming too quickly!  I have lots to do over the next four days.  I have a work deadline to meet, a newsletter to create, a friend who needs a hand on Saturday, as well as finally contacting my insurance company to see what I'm up against with them, and learning what I can about the upcoming procedure.  I also have to go to the hospital tomorrow for what they call pre-anesthesia testing.  Two hours of blood work, medical history (how many times do I have to dole out my medical history at the same hospital, which is fully equipped with the latest in technology?) instructions and who knows what else.  So I had better get back to work and wrap some of these things up before Monday.  

Thanks for all the support, the offers of help (which I'm sure I will take you up on eventually), your kind thoughts and good wishes.  I will keep you posted or will have my emissary (aka Lydia) do so.