Tough Day

Today we began the process of transitioning my mother to hospice care. She had a very bad day yesterday and had been so very weak. She was also having difficulty breathing. Tests revealed that the cancer has spread to her other lung. Those of you with access to her CarePage already know more details. I wanted to share this much here because many have commented or been concerned that I wasn't writing much.

I continue to do just fine. I had chemo #2 with little incident, save a couple of punky days and one low-grade fever. I continue my HBO treatments for another two weeks, and am still on track to complete chemotheraphy on 12/4. I've got the wig and the boobs and can now fake it 'til I make it real sometime in the spring. My own situation seems so inconsequential compared to my mother's.

The intertwining of the physical and emotional toll this is all taking is hard to measure. I am not in denial, but I guess a sort of disbelief and yes, a bubbling anger. What god or grand being would put one family through what we continue to go through? How much pain can one family take? What's the great lesson to be learned from this? What is it with my family and this damned disease? I hope with time this will become clear. In the meantime I am chanting the serenity prayer as it seems so fitting.

Please grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference

We are a strong family, have tremendous love for each other, have an amazing support network, and will get through this together.

We will be OK.

Dandelions

Last Wednesday I awoke at the usual time to get to my 8 a.m. HBO session (Hyperbaric Oxygen Therapy for those not keeping up). I noticed a few hairs on the pillow. It was starting. Sigh.

As I ran my fingers through my hair my hand emerged with a handful. If I tugged even a little I could pull out a clump. It had started very slowly two days before, and today was the day I had anticipated it coming out with gusto. I had made an appointment to have my wig fitted later that day, and planned for Bill to shave my head after HBO. I swore after the last time that if I ever had chemotherapy again I would shave it and be done with it, rather than let it wist away one strand at a time.

As I left the parking lot and headed for the HBO center at the hospital, I took my usual route, which involved walking through a short tunnel that concentrated the wind, like a wind tunnel. As I walked through that tunnel, a gust of wind came along and blew threw my hair. I could feel the wind taking my hair with it. I felt like a dandelion that the universe was wishing upon, each golden strand carrying with it the hopes and dreams of not just me, but every cancer patient who's endured this experience.ever lost their hair. The anticipation had made me very emotional, and at this thought my eyes welled with tears. Then of course there was the wishful thinking. Maybe it wouldn't fall out. Maybe the relatively small amount that had already gone would be it. Maybe I would be in that tiny percentage who wouldn't lose their hair. All the while I knew these to be wishful thoughts, but not reality.

After my HBO treatment (#13), I headed home filled with dread. Bill would be waiting and ready to get the job done. What I didn't know was that he had set up his own private barber shop under the palapa in our backyard. This was so perfect it made me cry too ... I've been doing a lot of that. For those of you who don't know, a palapa is a thatch umbrella much like those you find on the beach in the tropics. I desperately wanted one in our backyard and we've had many wonderful memories out there. It seemed very fitting for this event. Bill even had a smock for me to wear. So I sat, sporting my smock, gazing out at the distant ocean view, trying not to think about what was about to happen. With the first pass of the razor I cried. This made it so very very real. But Bill was wonderful. He waited and indulged my need to emote. Then he continued, meticulously. Within 15 minutes it was done. I had a head full of stubble, that would scatter with the wind when rubbed.

I put a scarf on my head and we got in the car and headed to the wig shop. I was still full of anxiety. What if it looked fake, like all those ladies in the chemotherapy infusion suite? Was I going to be self-conscious for the next 6 months? Would I be able to function with any sense of normalcy? Ofelia, the woman at the wig shop, was waiting for us. She very carefully fitted the wig so it was just snug enough. Then she got out her scissors and trimmed it to keep the bangs out of my eyes. When all was done I took a moment to really look at myself in the mirror. Relief. I looked like me. I had hair. I turned to Bill. "Does it look natural? Can you tell it's a wig?"

"It looks lovely," he replied.

It felt weird. As we left the shop, headed for lunch out ... my first public appearance with my new do ... I felt very self-conscious, as if everyone knew my personal secret. She's looking at me ... she knows. Putting on sunglasses was a trick ... if I'm not careful I push the wig off center.

And so began my new look. One I'll be relying on for months to come. With each day I'm more comfortable. I've got some very cozy caps, and am getting pretty good with a scarf. The kids are no longer freaked out if I walk around the house with nothing on my head at all -- a true silver lining on a warm southern California day like today! It's really easy to do my hair and it always looks good. Then there are the added advantages of no tedious shaving, no barbaric waxing, and a strangely enlightening sense of who I am.

I am not my hair. Of this much I'm sure.

Pre-emptive Strike

I vividly remember a few key events from my first go-'round with cancer. One of them stands out above all others. It was the summer of 1984. I was taking a summer school class at the local community college to make up for the class I missed when I was diagnosed with my relapse earlier that year. I had started chemotherapy a few weeks earlier, and was sitting in class taking my final exam. As I sat at the black lab desk, studying the exam, it started.

First it was just a couple of hairs ... sun-bleached blonde against the shiny black of the desk. It took a few moments for me to register what was happening. I had hoped this wouldn't happen. I had been using the "cool cap" they suggested to freeze my hair follicles during chemotherapy so my hair wouldn't fall out. Yet there was the evidence, in black and blonde, right before my eyes. I ran my fingers through my hair and a handful of hair came out.

I finished my exam but didn't do very well. My hair continued to fall out for several days. The cool cap had done a half-baked job, as I never lost all of my hair but it thinned tremendously. I had enough wisps to fake it, with the help of a scarf or hat, at least in my own mind. After that experience I didn't cut my hair for years and years. It was down to my tailbone at one point and I got lots of compliments on it. I've had girlfriends tell me they think my hair's my best feature. I've had boyfriends tell me never to cut it. I guess, sadly, it became a part of how I identified myself.

It is that memory that is at the root of my anxiety over losing my hair. Anxiety that I'll be somewhere undesirable and public when it starts to go. The anxiety that people will stare if I wear a scarf, and know if I'm wearing a wig. The anxiety that my children will be afraid of me because I look so different.

And so, this superficial thing that shouldn't matter has been the subject of much introspection. I knew from the beginning that if I ever had chemotherapy again I would just accept the hair loss and ultimately shave my head. But something about going from very long hair to no hair at all felt traumatic. So, I decided I needed a plan (not a big surprise to those of you who know me well!).

My friend Jen and I have been seeing the same hairdresser for something like 15 years. A year ago she "retired" to be home with her kids, and we've been in mourning ever since (hear that, Pat???). Given the emotion surrounding my current situation I really wanted to get help from someone who knew me well. So Jen tracked down Pat and today I visited her in her home. She was my strike team in giving me a transitional haircut that would ease me into the notion of less hair without abruptly throwing me into no hair. I'm now short and sassy, at least for another week, so when it does fall out there will be less of it to fall.

I must say I was surprised at how good it felt. "I'm still me, it's OK" I thought when I looked in the mirror. "It's actually really cute."

Then Pat, ever the psychotherapist cum hairdresser, said "I don't like the reason that we did this but I gotta tell ya, I've been wanting to see you in short hair for years!" And so I enter a new chapter and may never go back ... we'll see.

I arrived home before Bill and the girls. They knew I was getting my hair cut and Rosie in particular was quite concerned about it. When they knocked on the door, I cracked it open and peered out. Rosie had a very worried look on her face. I then opened the door and her eyes brightened with a huge smile and visible relief. Tess was smiling too. "Mommy, you look beautiful!" Bill said I looked "sophisticated."

Tonight when Sofie called from the east coast I said "Guess who got her hair cut really short?"

"Rosie?" she said.

"Nope."

"Tess?"

"Nope."

"Mom. What did you do!" She was afraid I had gone straight to bald and was a bit panicked at the prospect. When I explained it was a transition she felt better. It will be fun to see the surprise on her face when I pick her up at the airport on Saturday.

And so, I too can join the sisterhood that chants "I am not my hair." I am much more than that. I am a mother. A wife. A daughter. A sister. A friend. A survivor. Who needs hair to do any of those things?

And how was YOUR day yesterday?

Yesterday was not fun, though I suppose it could have been worse. I began with yet another HBO treatment bright and early at 8 a.m. Hurt less than those before, but my blood pressure was still through the roof so somewhere in my psyche I really don't like it. On the up side, my incision is healing exponentially better than it did prior to, and my skin looks great!

From there I made a quick trip home, then it was off to my doctor's office for chemo treatment #1. I was really not looking forward to this for a lot of reasons. The biggest of which was the only reference I had ... how the whole experience went 25 years ago. I won't belabor the details but suffice it to say it sucked.

My memories, ironically, are somewhat vague. I don't remember how long it took. I do remember my nurse's face, but not her name. I remember the desperate attempt to save my hair using a contraption called a "Cool Cap." The theory was that if you froze the hair follicles while the drug was going in, they would temporarily not be "fast growing" and would therefore not be impacte by the chemo. My nurse said I looked like an Ishkibibble, whatever that is. It worked, but only sort of. I think I convinced myself it was working but looking at the only picture I have of myself from that time my hair was pretty darn thin ... not sure I was fooling anyone. Nevertheless, it worked and here I am.

When they called us back (Bill, my every cheerful rock, was with me), they took us back to the "Infusion Suite." This is a room that contains probably 12 barca-loungers ... reminiscent a bit of the TV room in firestations I've seen. Each has a shiny silver IV infusion pump next to it and, when I arrived, nearly all were occupied by very old people. As I surveyed the scene I felt a lump in my throat and the telltale sign of tears sprouting. This was making it all too real. This people are all sick. I'm sick. I refuse to believe that or surrender to it.

Thankfully, as the nurse looked around for a place to put me, her eyes turned to a small room off the suite, also with a lounge chair. "Have a seat in there," she said. Oh thank goodness, I thought.

So Bill and I made ourselves comfy in our private room with our own TV and IV pump. After two sticks they got the IV in. They started with the Happy Juice - the anti-nausea drug that wasn't around 25 years ago but which is now my new best friend. Then came the Taxotere. I asked if it was related to the Taxol my mother is receiving and learned that both are derived from the Yew tree, but Taxol comes from the Pacific Yew tree, and Taxotere comes from the more hoity toity European Yew tree. Finally came the Cytoxan. They all just looked like cloudy saline. No color, thankfully. I vividly rememember the bright red Adriamycin (also known as the red death) I received the first time around.

All told it took around 4 hours, including my orientation session. Next time will be shorter. I felt fine leaving the office and felt fine for most of last night. Had yummy chicken fajitas for dinner complements of a dear friend who's here every Thursday to make sure we eat well.

This morning I'm a little punky but not too bad. I think I'll be just fine for my 1 p.m. "dive" but I wasn't up to taking Sofie to the airport this morning. Bill took her and she was an absolute champ. For those of you unaware, my oldest daughter Sofia was nominated to attend the Junior National Young Leadership Conference in Washington DC. She'll be met (and spoiled) by Bill's sisters then dropped at the conference in Bethesda tomorrow afternoon. I miss her already but she was so excited and is so ready for this experience.

Next step: hair loss. Probably within the next 10 - 14 days. I'm still wrestling emotionally with the whole thing. It's one of those that you really can't prepare for. I may opt to issue a pre-emptive strike and shave it all off before it starts coming out. Or, I may wait for the first one to fall then rush to the hairdresser. Thankfully I've got my wig waiting for me ... they can't fit it until I don't have hair. That probably deserves a whole blog to itself so I'll leave that for another time.

One down, three to go. I'm counting the days until December 4th when I'll have my final treatment. Thanks to all of you for joining my on the journey.

Not Your Father's HBO

I've tried to learn how to scuba dive twice in my life. Both times the universe intervened and cursed me with a nasty case of bronchitis before I even donned a wetsuit. Now I know that the universe was my friend.

Until this past Monday, the letters H-B-O meant only one thing ... a great first-run movie, some popcorn, a glass of wine, a quiet Friday night. Not any more! No, H-B-O now stands for HyperBaric Oxygen therapy, and what a thrill it is.

So here's the deal. Tissue that's been previously radiated, as mine has, is a completely different animal when it comes to healing. The radiation killed the cancer cells but also did a number on the healthy tissue too. Biggest problem is that the radiation inhibits the ability of blood vessels and arteries to form, hence healing is either slow or stalls completely.

Enter the superhero ... H-B-O. The theory is that by taking my body to an air pressure equivalent to 45 feet below sea level, and having me breathe pure oxygen for three 30-minute segments, we're totally boosting the oxygenation in my blood and body and therefore stimulating all of those little bitty blood vessels to go crazy and grow. Totally makes sense, right?
Now, let me tell you about the reality. First of all, the "treatments" are referred to as "dives," hence the preamble regarding my lack of scuba diving experience. Second, the enviroment is, essentially, a mini submarine (and it's not even yellow!). When I arrive for my treatment I change into surgical scrubs, which allow me to relive my age-old desire to be a famous surgeon. I should point out that the other people there (yes, this is a group activity), are at least 100 years older than I am. I'm definitely the novelty of the group. I can totally sense they're all dying to know why I'm there but are afraid to ask. I don't offer, which is kind of fun in a sneaky kind of way.

I will say they're all very kind people. There's Yousif, the Egyptian man. Unfortunately on day 1 Yousif forgot to lock the door of the changing room. He also forgot to move the sign from "Vacant" to "Occupied" so in I strolled and there he was in all his glory. He had his boxers, t-shirt and sox and shoes on ... we shared a bonding moment and never spoke of it again. Yousif completed his 30th and final dive today. Our conversations revolved around his limited use of the language. On Monday, he shared that "Today is twinty seven." Yesterday, I confirmed "So today is 29?" He smiled. "How many all together? "Tirty," he said. "Tirty." I don't know why he's there but I'm happy that he's healed, and happier that he's done diving.

So decked out in my surgical scrubs I then get my vitals checked. I will have my blood pressure taken around my ankle for the rest of my life ... something to do with the double mastectomy, lymph nodes and lympedema. On the first day, when I thought I was sailing into yet another standard treatment type experience (having been to the rodeo before), my blood pressure was normal for me, (110/90 or so). When I made the appointment the gal on the phone said "You'll go into the chamber and breathe oxygen for two hours." Sounds easy, I thought. "Can I bring a book?" "Sure, she replied. Piece of cake, right?

So armed with that information I went into Monday feeling pretty good and relaxed and my blood pressure was fine. On day two, my blood pressure was 159/99, so that'll tell you something about how day one went!

OK, so there I am in my scrubs, vitals are checked. Next, it's time to don the collar. Think disco futuristic space suit. The collar is the foundation for what will be the large cylindrical clear plastic bubble that goes over my head when it's time to breathe the oxygen. It's a large white plastic circle, probably 14-inches in diameter. It's lined with a lovely billious blue latex insert that is intended to go snug against my neck. It takes two people to put it on, and long hair is problematic (though the techs are far more worried about pulling my hair than I am. You should have seen the looks on their faces when I said "just think how easy this will be when I have NO hair!. Uncomfortable laughs and averted eyes ... it was great!).

Once the collar's on, into the chamber we go. It's a mini submarine, really. Those of you really interested can check out the virtual tour here: http://www.sharp.com/virtualtours/index.cfm?id=9086. I sit in one of the three cushy seats. The chamber can hold up to five patients, three in seats and two in wheelchairs. Most days it's not quite a full house though this morning it was. There's also a "dive attendant," a certified tech or RN who's the equivalent of the HBO cruise director. They give me a foot stool, offer me water, and then the fun really starts.

They close the door (cue dramatic music). Did I mention I'm prone to claustrophobia?

Next, they "take us down." This involves a rather annoying hissing noise as they increase the pressure. The first thing I notice is that it's getting warmer. The more compressed the air is the warmer it gets. The next thing I notice, or should I say it announces itself with a vengeance, is the pressure in my ears. It starts and escalates very quickly. On day one I was in pain in just a few seconds. and they had to stop the dive, increase a couple of feet, then let me equalize before continuing down. Day two was better, and each day's been a bit better since but it's still a painful process. I've never been a good one for the whole pinch your nose and clear your ears thing. It just doesn't work for me. Of course my geriatric shipmates are showing no signs of any difficulty. The occasional yawn or nose pinch is about as far as they need to go. Of course those of you who know me know that I hate rocking the boat, particularly in new situations, so I always let it go just beyond uber-painful before I surrender and say "It hurts!"

So once we've reached our destination at 45 feet below, a little voice from above says "On O2" through a speaker. "On O2, I understand" replies our cruise director. They then attach the clear plastic bubble hood to each of our collars and begin the oxygen flowing. So I'm claustrophic in the first place. I'm inside a small cast iron tube. And now they put the equivalent of a plastic bag over my head. Can you say anxiety?

I pull out my book and if I really focus I can escape into its pages and forget where I am. But then the cruise director comes by and adjust something and brings reality right back. The good news is I'm getting a LOT of reading done because we wear the hood for three thirty minute intervals with five minute breaks in between.

Once we've finished, we head for the surface. Decompression is not painful, but does sound like Snack, Crackle and Pop are having a heckuva party in my ear drums.

I don't know how much longer I'll need to do this, but it is a daily event. I'll see the doctor Friday and find out how many more he thinks I may need. If it's too many they can put tubes in my ears that take care of the pain (and therefore most of the anxiety), for good. We'll see.