And What Followed...

Sunday, August 27, 2006

msg from Julie D - Visit with Christine

I spent an hour yesterday walking on the COH grounds with Christine. It's good to see Christine out of the hospital. After 63 days, now staying in the cottages as she recovers.

To think she only had about a 30% chance to survive because her bone-marrow match was a partial one, but, right now it looks like she is doing just that. Her family have been to hell and back with all this but have been sustained by their deep faith.

As we slowly walked around (had to do it after sunset because she can't be exposed to the sun) she, wearing a heavy-duty mask to keep out bacteria and germs, marveled at a cottontail rabbit, a squirrel, and even a large spider we saw dangling in front of us. She chose to leave the sidewalk to walk on the grass just to feel it beneath her feet, even through her shoes. All of these sights and sensations gave her instant pleasure.

While the rest of us are stressed to the max just getting through our daily lives, Christine is teaching us how to live and appreciate the small yet important things. Along with other cancer warriors, her story and her writings from her first transplant will be in a book, Writing for Wellness.

The book will hopefully find a publisher soon. I believe that the method developed in the writing class at City of Hope is a good one and one that can help many, many people as they and their family members go through the "cancer experience" which mostly, today, includes survival, thank God.

-Julie D

Wednesday, August 23, 2006

A little set-back

Well, I just found out today that I've contracted a dreaded viral infection. No one can say where it came from. In addition to the concerning "chimeric" transplant, it also explains why my blood counts are not rising. For normal healthy persons, this virus is common and does not cause any acute problems, but it can prove fatal for newborns and those with "suppressed immune systems" (moi!) Thankfully, it is treatable with heavy medication. 15 years ago, it would have been curtains for me, so in a strange way, I'm "lucky" to have contracted it now. It's amazing how far medicine has come in just a short matter of time. It's another mountain to climb over but I'm just hoping to see waterfalls on the other side.

My hair is slowly growing in. It sort of feels like thick peach-fuzz, or a little chihuahua. I've finally mastered the G-D-C chords on the guitar. Visitors are staying longer. Walking is easier but is still exhausting, but with each day I am walking farther and walking longer, even if it is just a few extra feet.

Like all of us, I'm just taking it one day at a time. And putting trust in God. Today was warm, sunny and beautiful... and I'm
breathing it all in while I can.


Monday, August 21, 2006

Day 46 (56) - Fighting from the inside out

Since I last wrote we got some news explaining why my WBC blood count has dropped so low, to neutropenic levels. We received the results from the marrow/graft test. It appears that, at this point, the transplant is not 100% successful….. yet. My blood is partly the donor's and partly my "old" marrow. I guess you could say there is a serious turf war going on inside me. The dueling WBC's, the cells that fight off infections and foreign bodies, are in battle with each other over who gets to stay. Civil War. Of course, in order for the transplant to work, we need the donor's marrow to graft.

When I got the news I just closed my eyes and took some deep breaths. This was not good. The doctor left the room to order another blood test, leaving the door open. I sat alone on the examination table watching my feet dangle. I could hear a woman sobbing into her cell phone in the courtyard below. Sunk into his wheelchair, an obese man pushed past my door, his oxygen tank trailing behind. The flourscent lights hummed above me and, on cue, the room began to spin. I focused on my breath again. Just a little more faith. Just a little more strength. Just a little more time. There is hope. It's strange to think that a part of me has to die in order for me to live.

I just want to thank everyone for all the cards, gifts and care packages. The encouraging e-mails, calls, and visits all add up to a blanket of love, wrapping me up in the good stuff.

You have all been a source of comfort as well as courage during the past several weeks. A bunch of savvy girlfriends even put together a huge "Diva box" and filled it with all sorts of luxurious goodies and sparkly stuff. Each day, for ten days, I'd reach into the box and open a new gift that would hint at a new brilliant life ahead. It was wonderful.

I'm sorry to be missing out on all the weddings, baby showers, house warmings, screenings, readings, concerts, birthdays and opening nights. I really wish I could be there. SO much has happened for so many of us in the last eight weeks. But
summer is almost over. I hope all of you are taking advantage of the time that is left to create some chocolate dip strawberry-topped memories.

Meanwhile, here is a poem that my friend Michelle wrote for me in a card included in the "Diva box". It was lovely, I had to share it. Like the poems says, I wish that all our "hearts will always remember…"

Much Love,

- - - - -

May you soon wander freely
Among life's lovely flowers
Reveling in the beauty
Of each joyous hour

May you soon stroll
Along your beloved seashore
Glowing under the warm sun
Enjoying the fury of the ocean's roar

May the coming of your summer
Soon be announced by the gentle turtledove
And may your heart always remember
Just how much you are loved.

-M Mirandon
August 2006

Saturday, August 19, 2006

msg from Tim S - Ebb and Flow

While at City of Hope for my own three month oil change, I was able to track Christine down over the course of the day. She was about 20 minutes ahead of me in get blood drawn, appointments, and consultations.

My inside sources lost track of her for about 20 minutes, but I found her in the Village. As you can tell from her most recent posts her strength and stamina has a natural ebb and flow. On this day she was able to walk to the hospital which is about two blocks. This is a good thing, but then who knows what tomorrow will bring. Being able to travel in a car also shows that she is doing okay.

If you have been through this process, you know that at one moment you can be feeling your freedom returning only to have it snatched away, by natures callings, fatigue, or just over doing the most simple thing.

Talking is exhausting. Being 'on' is exhausting.

Currently it seems as if her own blood cells are having to teach donor-man's cells how to act appropriately. Seems that donor-man's cells are still a little slow on the uptake a bit in learning what they should be doing. Obviously, they have never lived within a woman before and are taken aback by the whole deal. Bufferfly's cells are being tolerant as they can be, but will soon just grab the little dudes and get them working for their pay. This will be good.

As usual she was in good spirits. When she comes out the other side of this she has a lot on her plate. Each items will be a work of joy. She is blessed to have so many dear friends and you to are blessed by making her aquaintance.

She looked good, Envisions the wonderful salad that will come in 50+ days. I can stil taste the first one I had. Folks always guess that BMT folks want some exotic mean when they become free. What we really crave are fresh fruit, berries, and that salad...

Always a joy to visit with Christine.

Tim S

Thursday, August 17, 2006

Baby Steps

We are now 42 days post transplant, 52 days since being admitted to the hospital with another 58 days to go.

I just wanted to write in real quick. Transition to the village has been both wonderful and challenging. Been taking lots of baby steps. Ten days ago I was bedridden. Five days ago I was shuffling around, relying on a wheelchair for support. Today I can walk the two blocks to the hospital without having to stop to rest. It's simple yet extraordinary.

I've been blessed to meet many heroes and courageous souls during my stay here. Some stories are inspirational, some break the heart. The word "cancer" may conjure thoughts of fear and death in some people, but here in "the village", daily conversation whirls around the subject of life and love. Of connection, commitment, faith and trust. There is no time for facades.

My daily routine is scheduled around doctor appointments and prescription medications. It's a matter of finding the balance between light exercise, deep rest, meditation and mental stimulation. Cabin fever is a good sign. I get emotional with every hug I share with visiting friends and family. When alone, I escape by reading or playing music. There's a grand piano in the small theater here and I've been tinkering with "Daydream Believer" by the Monkees: (I like to listen to it on my ipod as I hop around the rose garden.) A couple friends came by the other day and we thought to take advantage of the theater for rehearsals and skits. I plan to sit in the orchestra and shout "More energy!"

These days, it is challenging to remember things and write fluently. My doctor assures it has to do with what my body has been through. "Cognitive dysfunction" or "ChemoBrain" thankfully is temporary, but it's disquieting when your brain is only able to think in sentence fragments.

Even though I must hide from the sun and wear a heavy surgical mask, it is so revitalizing to be outside. My doctor just gave the approval for me to ride in a car. I can leave campus, but only for a short time and have to stay in the general vicinity. The
first place I visited, of course, was REI. It was the first time I left the hospital grounds in over seven weeks.

It means a lot that there are angels out there who continue to spread the word, conducting marrow drives, and educating friends and family about signing up on the registry. Let's continue the good.

In terms of health and recovery, my blood counts plateau'd last week and this week the levels have actually gone down to a semi-critical level. This has caused a bit of concern and we are praying that things improve soon. Each day is still a struggle but to be alive… that alone is a blessing

The other night my mother and I briefly left the room to watch the Perseid meteor shower. We only saw one shooting star, but it was enough to make a wish.

Much Love,

Tuesday, August 8, 2006

Update from Jocelyn - The new digs

Hi Everyone,

I spoke with Christine today at her new digs, which she calls the ultimate slacker's pad, and she sounded great. She's still tired, of course, but getting stronger every day. In fact, yesterday she learned (drumroll), that she won't be needing anymore platelets!!! However, she still encourages us to donate on her behalf as she has many friends at City of Hope who could use them (she didn't give specific names). Stephanie, who donated last Saturday, gave 2 almost 3 units of platelets...(I am told she didn't make it to 3 because the machine couldn't keep
up with her!!! Christine calls her the Barbarella of the platelet world!) will be Christine's last batch of platelets because she is doing so well!

Also wanted to pass on some information for visitors. Christine loves having visitors, make sure to call ahead as she has many appointments during the day in the hospital, and, at the doctor's request for the next one to two weeks, we should try to limit visitation time to under an hour since it is imperative that Christine gets plenty of rest during this time.


Sunday, August 6, 2006

Six weeks later

Alas, the new room in the village had NO DSL. And for some reason I can't access my dial-up either. I only have access online when I go to the "main house" of the village. Only two computers are provided for the entire community and are available only during business hours, thus there is usually a wait and a time limit. My point: I should be able catch up with my e-mail by 2010.

Last night, for the first time in six weeks, there was nothing between me and the sky. The stars were dim but palpable. Though having to wear a heavy surgical mask prevented me from breathing in the night air, I could feel it in the pores of my skin and it was delicious.

There is quite a bit of wildlife on campus. I saw a hawk swoop by clutching its prey. I watched a cottontail bunny rabbit in the grass munch on a guava. A squirrel came up to my door, hoping for a treat. Hummingbirds and butterflies flit and whizz by. It's like a mini- animal park.

My energy wanes from low to extremely fatigued so I am not romping through the grass just yet. But it is SO GOOD to feel the sun and the wind and the earth.

much love,

Friday, August 4, 2006

Day 30 (29) - Good News

August 4, Day 30 (39)

Good news.

My blood counts have been doing so well over the last couple days that the doctors have decided to move me to the village... TODAY. The village is a small cluster of "outpatient"
bungalows located on campus. The rooms are by no means fancy... more like a medically
themed Hotel 6, but at least we will be out of the busy main building. It is quieter, has
more privacy and each unit has its own kitchenette.

The nurses keep on reiterating "You're not out of the woods yet" and then follow with a laundry list of things to avoid (like sunlight), symptoms to watch out for (like a cough) and
medications that are essential. Supposedly if I forget to take two pills in particular, I won't survive more than 24 hours. The hospital staff goes on to say that if complications, infections or rejection were to occur, it would most likely haqppen in the next 6 months, but more likely in the next 70 days. No champagne popping yet but things are looking good so far. Think good thoughts.

The staff here says that my recovery had been "remarkable". I attribute it to all the prayers and good vibes that are whizzing through the air. Thank you so much for the continued prayers and for being with me every step of the way. Medicine can treat, but it is love that heals.


Tuesday, August 1, 2006

Trasnplant Day 27, (36 days in the hospital)

Tuesday, August 1, Day 27 (36) .

Halleluiah! I'm online! A tech came into my room this afternoon and said "Congratulations, you have DSL!". Good timing, because it's only now that I feel strong enough to sit, focus, read and type, for a few minutes at a time, at least. There is still a long way to go but I am so thankful to have made it this far into the transplant. It's been a rough ride, but I'm SLOWLY getting better with each passing day.

Picture a boundary of a 15-foot radius surrounding your humble bed. Now imagine not going beyond that boundary for almost an entire summer. Yet, within that circle you experience one of the most remote and arduous of journeys, with 90% of the time not extending beyond center. It's been 36 days since the heavy doors of this hushed, sterile ward sealed off the aromatic chatter and pungent textures of the outside world. And each day has been draped with uncertainty, with Hope clinging to the yards with long arms.

The effulgence of life is so real here because death lingers so close. It would be too easy to describe the experience as "surreal", but the world inside the heavy doors does bear closer to a disjointed dream or stuff of placid nightmares. Except for the one hour when you are "unhooked" in order to take a shower, your heart is literally tethered to a pair of six (or seven?) foot long vertical poles on rolling casters, via catheter tubing from your chest. This is also known as the "IV tree", whence hangs a buffet of chemotherapy, narcotics, nutrient support, antibiotics, antifungals, antivirals, and antirejection drugs.

Nurses and long-term patients share a special dark humor with each other to help cope with the daily activity of holding on. One of the running jokes is that you are "married" to the "IV Tree" for your entire stay. As a result, some people have taken to christening their trees with special names. Men, especially those under 40, call their trees the "mother-in-law" or simply "in-law". Women tend to be more whimsical, with "Antonio Banderas" or "George Clooney" being the popular guys to have by your side 24/7 while facing each day.

And with each day it is the tiny goals, the littlest of accomplishments that bring applause and tears: Going 24 hours without needing narcotic pain medication; Feeling well enough to raise your arms above your head; Regaining the ability to swallow food. Less than a week ago, I tested my strength and stamina by trying to stand in the shower. When I was finally able to stand for the entire five minutes, the nurse clapped and cheered and then sheepishly pumped her light-blue, non-latex glove in the air.

I love showering. Though the private bathroom is just five feet from my bed, the shower is only time I can "escape" from the bland heavy air of the hospital ward. The faucets turn, the hot water flows down, I close my eyes and suddenly I am covered in Plumeria lather in an outdoor shower on Maui; I am kayaking sea caves in the Meditterean; I am dancing in Virginia rain.

Four days ago, I was finally allowed to leave my room, covered in mask, gloves and isolation gown. I took a short walk in the morning and starting yesterday, I take another short walk in the evening. There are many stories in this hallway. Some tragic, some inspiring. There was the 3-year old girl and her mother who waved to me through the window. A year and a half ago the little toddler was fighting for her life . Three times her mother was told that her little girl would not make it through the night. Now the little girl smiles with cherubic cheeks, healthy.

There is also Rodrigo, who had a transplant 28 years ago and now works as a BMT nurse to help others make it through.

Okay, there goes my energy... need to doze off for now. 27 Days Down. 73 more days to go before I can leave the hospital.

I can't believe it's August. Sending much much much love.