Salve for My Soul

It's a gorgeous, mostly sunny day in New England this last day of August. It's not hot, high 60s to low 70s is expected today. I sit here on our screen porch in quiet solitude; sounds of nature the only music--the green leaves rustling in the wind gusts and every once in a while a chickadee sounds off, "chick-a-dee-dee-dee-dee." My chemo-sensitive olfactory glands pick up the sweet scent of last night's cooler temperature's lingering effects. Somehow everything smells like bed sheets fresh from the clothesline.

This porch, this lovely country home setting we are so blessed to live in, it's salve for my soul. Even as a little girl growing up in the hills of Unity, New Hampshire, I've needed my quiet time amidst the living vegetation out of doors. Life that grows from small seeds, dirt, sun and water. There's something about it, perhaps just the reminder it is of our Creator. No human being can create a tree or a rock or a flower. Human beings can manipulate all those things, genetically alter them, etc., but we can't create them.

Day after tomorrow I will spend another day at the Dana Farber surrounded by white coats, stainless steel, needles, alcohol wipes, hand sanitizer and other hairless women wearing little caps or scarves. As I nestle into the infusion chair around 10:00, I will close my eyes and imagine this morning's scene, take a deep breath and know it's one day. It's one day closer to my final treatment.

Good Grief, the Stages

Her words had a sting to them. I heard her saying she was disappointed that I'm not dealing with this well. "I can tell by your body language that you're down, Mom."

"Caroline, I'm not feeling well today. I haven't felt well for seven days straight. I have no energy."

As the conversation continued, I realized she was coming from a place of love and concern and wanted to give me a pep talk; encourage her mother to get her mind into the fight. "That mind-body connection is so vital," she said. I couldn't argue. I know it. In fact, that morning I had made myself take some time for prayer and had come away with a renewed sense that giving in to discouragement would plunge me into a deeper battle that I didn't want to wage.

We talked about the stages of grief and how inevitable it is to experience them when given a life-threatening diagnosis. It occurred to me that I've been in and out of most of the stages even though it's hard for me to identify times of bargaining. Not sure I've been there. But certainly there's been plenty of denial, some anger, times of depression and times of acceptance.

We zeroed in on the hair loss. "Why are you so concerned about people seeing you without your wig, with just a scarf or whatever?" Caroline asked.

That was a great question and very difficult to pin down an answer. I've always wanted to just blend in, wearing a head covering shouts to the world, "I have cancer!" It begs attention and elicits sympathetic eyes trying to conceal sympathy. There's always vanity in the mix too. I want to look good and having no hair makes me feel very unattractive. Losing my hair has also made me face the denial I waffle in and out of. Every time I look in the mirror at my hairless head is one more stab of truth that, yes, I do have breast cancer. I do! Oh my God, I do!

Acceptance is within reach.

Warming the Pew

It really surprises me how much the daily battle with the physical distracts me from the spiritual. I wouldn't have guessed that would happen to me. It's not that the spiritual component of my life is missing, how could it be? I know I am always in God's presence that God's Spirit lives in me. It was a little over 32 years ago when I came to terms with Jesus, discovered the truth of his nature and identity, the Son of God who left heaven to live in human form, experience it fully, and give up his life as the ultimate and final sacrifice for the sins of mankind; he bridged the gap, made a way for human souls to spend eternity in heaven. As if that weren't enough, Jesus made provision for human life lived in this world; to live it abundantly as we open ourselves to become more and more like Jesus in our nature, most important of all to love as he loved.

After all these years, these truths are innate in me. So it surprises me when morning after morning turns into afternoon and I remember I didn't pray. It is nice knowing others are praying for me though. So many people leave messages in my CaringBridge guestbook that they are praying for me. Others email me and tell me of times and places that caused them to think of me and say a prayer. Today I realize that right now my faith is being upheld by others' faith. It's not the first time this has happened.

When my sister J0-Ann died in 1992 of lung cancer, I was in a daily battle with the spiritual. I was numb, going to church on cue yet really only occupying the pew. I was there in body, not in spirit. A friend approached me on one of those mornings, "How are you doing, Donna?"

"To be honest, not that great. I feel like I'm just warming the pew these days," I said.

"Well, if that's all you can do, then just do that!" he said.

I've never forgotten how freeing those words sounded to me that morning. It was okay to feel what I was feeling, experience what I was experiencing, and wait for better days. They came eventually. And better days are ahead of me now too. I'll continue to "warm the pew" and be present with God even though I personally don't have much to say to God right now. I continue to fall asleep at night with the image of my daughter holding baby Anna and see God as nurturing mother holding me close, comforting me, taking care of me in this time of great vulnerability and need. I'm a lot like Anna--I'm pretty much a helpless babe in God's maternal embrace.

Who Told Me To Shave My Head Anyway?

If I had it to do over again, I wouldn't shave my head so early. I believed my clinical trial nurse when she told me last Wednesday that my hair would be gone by the weekend. It appeared to be happening pretty fast when on Thursday morning in the shower, lots of hair had collected on the hair catcher. Later in the day, I had hair in my fingers every time I ran my fingers through my hair. Somewhere along the way, I had the impression that shaving it would make the process so much easier to bear. Now I'm not so sure.

It's Tuesday, nearly a week after my clinical trial nurse declared my hair would be gone by Sunday and I still have lots of hair. But it's rough stubble all over my head and my stretchy caps hurt like crazy to wear, just prickly, prickly as it squeezes against the grain. The hair is indeed falling out at a fast rate, but it's absolutely unbelievable how many strands are in a head of hair! I sat at my desk yesterday and discovered I could rub and rub, going with the grain of course, and it just fell out onto a piece of paper looking like two-day's worth of someone's beard as it accumulated. The "whiskers" fell down my neck and got stuck in my collar. Very uncomfortable.

I tried taking a second shower late in the day yesterday to see if I could finish the job, but no luck. I remembered a friend describing how her hair fell out over a period of several days and how it got harder and harder to blow dry and style (hers was all one length below her ears with bangs). Eventually, the day came when she could finish it, so she sat and pulled the rest of it out.

I can't change the fact that I shaved my head a little too early. I have to live with my decision and it will eventually all be gone. In the meantime, I've added just a little bit to my suffering. And I know what I'll advise someone else facing chemotherapy-induced baldness: don't shave it prematurely!

Not Seeing Eye to Eye

"It is so hot with this cap on," I said to my daughter, Caroline. Summer decided to arrive in New Hampshire last week and yesterday was particularly hot and humid. At my request, Caroline brought Ava and Anna out for a visit.

"So take it off. Why do you feel you have to wear it?" said Caroline.

"I don't want to freak out Ava."

"Mom, you're projecting that onto her. It's just a new haircut to her," she said.

I took off the cap. Ah, relief! After a while, Ava came in from playing outside with Papa as he grilled the burgers for dinner. I was alone in the living room when she saw me without the cap. Her mouth stiffened a bit and the corners turned down as she stared at my hairless head. It all happened so quickly. I knew without a doubt she was a bit repulsed at the sight.

"I have medicine for my booboo and it makes my hair fall out, so Uncle Brian helped me and," I began.

Before I could finish, Caroline appeared and interrupted, "LeeLee got a new haircut. Don't you like it?"

Ava didn't respond verbally, but turned away and wouldn't look at me. We got busy putting plates and sliverware on the dining room table, Buck came in with the burgers, and we all sat down at the table except Ava. She stood by the open window and kept announcing that it was raining outside.

"Com'on Ava, here's your seat. It's time for dinner," said Caroline.

Ava stole a glance at me and turned back to look out the window and said again that it was raining outside. In that momentary glance, I knew she wasn't comfortable sitting across from me with my head uncovered. I quietly got up, put my navy blue cap back on and sat down at the table. Ava then joined us and had no problem at all looking at me or eating her dinner.

Our adult dinner conversation included the topic of my treatments, the effects so far, and what I might expect as time goes on. It became very clear to me that my daughter and I do not see eye to eye in terms of how to help Ava understand my serious illness on her level. Ava listens to the adults in her world as they discuss LeeLee and what has happened. She knows something is up. It feels less than honest to tell Ava that I got a new haircut. Well, let's face it, it's not true. I'm more comfortable telling Ava that LeeLee has a booboo and needs medicine that makes her sick sometimes and makes her hair fall out, but it will all grow back and I will get better and she will be able to come and spend the night again soon. So far, I haven't had a chance to explain that to her. So far, her mother doesn't see it the same way I do.

My Pity Party

I just said to my husband, "I'm really sad that I have cancer, honey."

"I am too," he said.

No, I'm really sad because I'm sad for everyone else in my life who has to watch me go through this. For my husband who loves me and has to helplessly see me suffer. For my Mom who lost a daughter already to cancer. For my son who loves me and doesn't know what to say. For my daughter who needs me right now; who was counting on me to be there for her; lend a hand as she adjusts to the new baby.

I'm especially sad for Ava. We stopped in to see them briefly yesterday. I covered my shaved head with a navy blue puffy cap I bought at the Dana Farber 9th Floor Boutique on Wednesday. I think at 2 1/2 Ava understands more than any of us give her credit for. She always checks me out, my earrings, "I like your earrings, NeeLee," or necklace. She always studies my face and gives me big hugs and kisses. Yesterday she kept her distance. She wasn't at all curious about my new, navy blue hat. When I took it off so her mother could inspect the shaved head, see the scar from when I fell off the swing when I was six, Ava was in the room, she never even looked at me. She wasn't curious. Not one bit.

I think she knows something is wrong. I think she has been listening to her mother on the phone with me, or updating someone about the latest news and that Ava doesn't know if she should ask questions or not. Ava wasn't herself with me yesterday. I sensed it. She and I have a connection and it wasn't there yesterday. I can't shake the image of her not even glancing my way when her mom exclaimed, "Seeing you with your head shaved, it's amazing how much Brian does look like you, Mom!"

I'm also sad for my extended family who live near and far. Everyone is so worried about me, about us, about the future. Cancer, it's such a question mark isn't it? Once you have it, you never know if you'll have to deal with it for the rest of your life, however long that ends up being. Like, did my sister ever guess that she had lived half her life at age 22?

I Hate the Mirror

Seeing my image in the mirror, no hair, looking like a cancer patient--I don't know, it makes me feel more like a cancer patient somehow. And when it's in the middle of the night and the umpteenth trip to the bathroom, thinking two days of laxatives and stool softeners are finally going to do their job, it's a major effort to avoid looking at my image in the mirror. I crawl back into bed each time and realize the gravity of my situation has perhaps escaped me 'til now.

I have breast cancer. I just shaved all my hair off my head and I have to reposition myself two or three times so I'm not laying against the grain of the stubbles that haven't fallen out yet. I'm thirsty but the bottle of water on my bedstand tastes awful to me. I'm hungry, I mean really hungry, and know I'll have to get up and eat a little something even though it's 1:30 am. Yet, I don't want to put anything else down my throat for my stomach to have to process. I shudder at the image of adding more bulk into my body that isn't passing food through properly. I finally have to eat something and remember the can of apricots in the cupboard. Good for constipation and the juice will quench my thirst. It works. I feel better, crawl back into bed and sleep for 4 hours straight.

Taking Control

When you know your hair is going to be completely gone and you know it will happen within the next four days and you are already getting handfuls whenever you run your fingers through your hair, you know it's time to take control.

I texted my soon-to-be 32-year old son, "Hey Brian, would it be too weird for you to shave my head? It's coming out fast and a real pain today. It wouldn't take too long if you could fit it in. Call me."

"I think I could do that. I'll call you in a few and we can discuss."

Excellent, excellent! It was only hours before I could be rid of this shedding mess. In the process, I got to snuggle my 2-year old grandson and watch his playful antics and have some belly laughs over them. Brian carefully shaved my hair into a mohawk style and we got pictures and laughed some more before he finished. Now I feel so much better. The short little stubbles of hair continue to fall out, but the soft pink cap is catching them and it is much easier to cope with the mess that way.

I have unfortunately, once again, mismanaged the constipation aspect of post-treatment days. The anti nausea drug Aloxi is responsible and I should have taken Senekot the night before the treatment not Colace. Oh well, since treatment I've been taking Colace three times a day and 2 Senekot at bedtime for the past two nights. Sooner or later it'll break loose.

All in all, this third treatment does seem to have a different feel, perhaps I've found the secret of embracing breast cancer instead of resenting it. I recently read in a book that the way to welcome difficult things life dishes up is to:

let go of our desire for security and survival
let go of our desire for esteem and affection
let go of our desire for power and control
let go of our desire to change the situation

I often fall asleep at night with these words in my prayers.

Three Down Six to Go

Buck and I, (that's my husband John whom I've called Buck for forty years) somehow manage to get up at 4:00 am when we need to. Yesterday, my first appointment at the Dana Farber Cancer Institute was at 6:30. Traffic on I-95, to Route 1, over the Tobin Bridge stayed light and we were there by 6:15. The elevator timer forced us to wait on the first floor until Floor 9 became an available destination at 6:30. We arrived to deserted check-in stations, not a soul around.

"We were told to be here at 6:30, were't we?" I said to Buck.

We tried to be patient, but the mere fact that we made the effort to honor the timetable and they didn't seem to care to do that, left me impatiently shaking my knees and searching for any signs of human activity anywhere on the floor. It was just about 6:40 when someone finally showed up and checked us in. No harm done. Got right through to be weighed, have blood pressure checked and then on to the IV nurse. We were in fact done with all that a half hour earlier than expected and had to wait for a while to see my oncologist.

I pulled out Jhumpa Lahiri's Unaccustomed Earth. As always, she pulled me right into her short story Once in a Lifetime. So cleverly written in an unusual voice of a young Bengali girl speaking to a boy three years older whose family her family had befriended. Of course I didn't get very far before I was called in to see my oncologist.

The pain in my lower back that caused me to feel like I had a intermittent pump inside me, scared me to death and sent me running to the emergency room last Tuesday night had nothing to do with normal stuff...it was the neulasta that Buck injected into the fleshy underside part of my upper arm to stimulate white cell production in my bones. Dr. A. has seen it a couple of times and the timing was right, about six days later, and it may or may not happen again. The good news was the tumor had visibly shrunk after two Avastin treatments. "I love this drug," said Dr. A.

We were up on Floor 10 for my infusion by 8:30 and on the road home by 12:30. I felt pretty good right after the infusion, however, on the ride home I reclined the car seat and slept a good share of it. It wasn't as bad as the second treatment, but it still isn't much fun to feel like crap, have a headache that won't quit, and even water doesn't taste good to drink! Yet fluids are so important at this stage of the game. Jello is good, vitamin water, fruit juices with ginger ale, they are all good and they all have those dreaded calories in them, in the form of white sugar too!

Just as I did after treatment 2, I ended up going to bed at 7:30 to try to escape the headache but of course I'm wide awake at 3:00 am. I will gradually have to recalibrate all of this over the next few days. Sitting here at the moment, drinking lemon zinger tea with honey, I'm having just a little indigestion, heartburn maybe. I've been taking Colace 3 times a day beginning yesterday and took two Senekot before bed. Supposedly, that's going to keep the systems from getting clogged up like last time. That'd be nice!

The Beginning

"Oh my God, I have a huge lump in my breast!" My exact words when I probed my right breast to see why it hurt. "Great! Now I'm going to have to deal with serious illness. Shoot! Bummer!" With shaky fingers, I scrolled through my Treo addresses to find the number for my ob/gyn. Got an appointment that day. Was told it was mastitis.

"Unusual, but not unheard of in post-menopausal women," she said. I was given a 10-day supply of antibiotics and a follow-up appointment. "I don't think the lump is cancer," she said.

When I returned for the follow-up appointment, she didn't like the fact the lump was still there. "I think you should go see the breast specialists. I still don't think it's cancer, but they deal with these things everyday."

Two days later, I innocently begin my breast cancer journey. I didn't expect that it was breast cancer, but within five minutes, it was obvious this specialist was very concerned about what she was seeing on the ultrasound. She did a biopsy on the spot. Two days later, I got the call. That was July 1, 2009.

It turns out I have Stage II, Level III triple negative invasive ductal carcinoma. The tumor is 3 cm and appears to be contained to my right breast. However, it is a very aggressive cancer and we couldn't delay treatment. The plan was to shrink the tumor, then try for a lumpectomy. After consulting with a local oncologist and since I live less than 2 hours from Boston, I quickly made an appointment for a second opinion as to treatment. It turned out Boston has a clinical trial drug that I qualified for which was not available to me locally in New Hampshire. I signed on the dotted line and on July 22, I received my first infusion of the trial drug, Avastin, only. On August 5, I received my second infusion, 3 drugs, Adriamycin, Cytoxan and Avastin. It took me five days to recover because I was so new at it all that I mismanaged my nausea medication and ended up constipated, then took too much Senekot and had diarrhea!

And all that brings my journey up to date. My third infusion is tomorrow morning. I have to be in Boston at 6:30 am. Bright and early has its benefits--first to get my IV, blood work and perhaps one of the first ones into an infusion chair! That also means, home early, perhaps as early as lunchtime!