"Letters from Aimee Shaw"

Message from Aimee Shaw July 12, 2007

"It Ain't Over 'til the Fat Lady Sings"
(or Until the 7th Trumpet Sounds) - (and sometimes even then it aint...

I have to take the time this morning to sit down and focus myself to write.
It’s been almost three months since my last formal writing, and people are
starting to ask how I’m doing. I just don’t have the time to do much of
anything that I actually enjoy doing these days. But it’s time to write.

It’s been almost a month since we got back from our vacation. We took two
weeks and went on a nine day cruise, leaving from New Jersey and heading to
some islands (Bermuda, St. Thomas, St. Martin, Puerto Rico). The entire trip
kept us in the Atlantic Ocean, so that was a first for us, and a bit more
adventurous. We had several days at sea, which was nice too. The highlight
of the trip for me was once again getting to see dolphins in the wild
(Atlantic Spotted). Marine biologists say that it is extremely rare to see
dolphins in the wild, so to have seen them twice in my life makes me feel
very privileged (actually, three times as I’ve seen them twice on cruises
and once off the coast in Hunington). God speaks to me (not in direct words,
but in signs) through such things, so it brought me a deep conviction and
reminder that He is with me, even out in the middle of the Bermuda Triangle.
There’s something about being out in the sea that I find very spiritual,
where I feel a deep peace. So in spite of my physical strain, my emotional
and spiritual self was able to rest. Other highlights of the trip came
during the days before and after the cruise, as we used our time on the east
coast to see Philadelphia, and New York City. We spent only half a day in
New York, as we took the train over from New Jersey and took in the
experience of visiting the World Trade Center site. Beyond that, New York is
not kid friendly, so we didn’t venture out of the WTC site. We spent two
full days in Philadelphia and saw the Liberty Bell, Constitution Hall,
Lincoln Financial Felid (Justin’s a huge Eagle’s fan), and also got to visit
the King Tut exhibit at the Franklin Institute and the famous Mutter Medical
Museum. Of course we had to try out the Philly cheesesteaks, and boy, that
is living right there! So, we did a lot, saw a lot, lived a lot in two
weeks, but needless to say, I was exhausted.

My level of complete exhaustion only seems to be growing lately. It’s been
since April that I’ve had any type of treatment. My treatment team is saying
that I need to be doing weekly Herceptin treatments, but they wanted to
check with Dr. Cristofanilli at MD Anderson before they started me on that.
Three months have gone by. I needed a break and was sick of chemotherapy, so
I didn’t push for more of it. I wanted to at least get through my vacation
without any immediate treatment. But as soon as we got back, I had to get
more aggressive in reminding my doctor that I’m supposed to be in treatment.
That was almost a month ago and I’m still not back in treatment. I had an
echocardiogram and PET/CT scans this week, so will see Dr. Patel next week.
Dr. Cristofanilli comes back from his absence next week as well, so I’m sure
when it all comes together for me next week, I’ll have a definite idea if I’
ll be proceeding with weekly Herceptin. There is a new drug (Tykerb) that is
working exceptionally well with metastatic Inflammatory Breast Cancer (and
it’s in a pill form), but we have agreed to save the “big gun” for another
recurrence. If I get the Tykerb now, we’ve narrowed chemotherapy options for
the future. In the meantime the side effects of these recent chemotherapy
treatments, and probably the conglomeration of all the treatments I have
had, has caught up to me. My hair is still struggling to grow back in. I’ve
gained even more weight as the result of the Decadron, I’ve battled severe
water retention (and am still experiencing it), but even worse, I’ve
developed disabling symptoms of neuropathy and fibromyalgia. The neuropathy
is in my legs and feet, but the primary and persistent damage to my nerves
is in my arms, hands, and fingers. It came on almost overnight and the pain
was so intense that I could not sleep at night. I couldn’t use my hands at
all. I was prescribed Neurontin in ever-increasing doses and I’m at a level
now where it’s tolerable. I’m still a bumbly-fingers, and have difficulty
with any fine motor tasks. There isn’t a single day that goes by when I don’
t drop something. As the day wears on and the Neurontin wears off, my
symptoms increase and render me almost completely disabled. I’m supposed to
start an afternoon dose in addition to my morning and nighttime doses, but
the Neurontin itself has some disabling side effects and I have to find a
balance so that I’m not overly medicated, but not in too much pain. If you
don’t know what neuropathy is, it’s damage to the nerves (caused by
chemotherapy, diabetes, injury, and other conditions) that causes pain and
weakness. The pain is very much like when your foot ‘falls asleep’ and you
stand on it for the first time. There’s a loss of feeling, a numbness, but
also a painful, prickly, tingly feeling. When it’s at it’s most intense, the
pain is a deep ache, like when you hit your ‘funny bone’ real hard. Only,
unlike that foot that wakes back up or the funny bone that stops being
funny, all these sensations persist. And the fibromyalgia. That came on
overnight too. I just woke up one morning and felt like I’d been ran over by
truck. At first I attributed it to our new mattresses. When I mentioned it
to Al he suggested that maybe it was all the work I’d been doing in moving.
But the muscle pain and weakness persisted, and weeks later I mentioned it
to the Nurse Practitioner. Fibromyalgia. It can be chemotherapy-induced too.
Gee, thanks for telling me. And we don’t know if it will ever go away. Most
likely not. And the same for the neuropathy. But I can work through physical
pain. That’s obvious. Unfortunately one of the side effects that is most
difficult for me is the “brain fog”. Until I did some internet research
about fibromyalgia, I attributed this growing sense of cognitive
disconnection to the Neurontin. I guess it may not be the Neurontin causing
me this ‘waking up from anesthesia’ feeling, but the fibromyalgia. It’s
emotionally painful to feel like I’m not “at the top of my game”. I feel
dull and struggle to push out of that fogginess that some days seems to want
to totally consume me. How much more can be taken from me?

But it could be worse. I could be totally bedridden, waiting my days out
with hospice service. And today, as far as I know, I have no growing cancer
tumors in my body. I will get the results from my scans next week. In the
meantime, I’m hanging on to the last circulating tumor cell count from a
couple weeks ago, and that was at a “0”- no identified tumor cells in my
blood (per studied amount). So, what do I do? I feel stuck again, like I did
when I finished treatment last time. But this time it isn’t an emotional
entrenchment, but more of a physical one. Working through my sense of loss,
through my anger and sadness with God, finding a peace and sense of purpose
in my life, I came out on the other side of that struggle stronger. My mind
and heart is ready to go back to work. I really found my place there. Damn,
it’s been almost a year that I’ve been off work. And I feel like I’ve been
aimlessly drifting since. But my struggle now is in repairing my body. My
body, my fingers, my legs, my mind, won’t allow me to perform at the level I
need to perform at to be successful at work. My medical leave expires in
September, and I’ve already been granted a six month extension. I just don’t
know if my body will be ready to return to work this coming September. And
yet, I feel like I’m aimless, like I need to settle into a purpose, a
reason, to get out of bed everyday. So, with a pause and a big sigh, I have
to say that I am again floundering in this uncertainty about the future. And
all of this may even be decided for me when I go in to see Dr. Patel next
week, if my scans have shown again an increase in cancer activity. That too
is forever in the shadow of my thoughts. They just haven’t quite yet figured
out how to cure cancer. And stage IV cancer is a serious and terminal
matter. It is death. Those who survive and are cured are few and far
between. While the number in that group is growing every year, treatment for
stage IV cancer is still considered palliative- there is no cure. So I, as
well as my doctors, fully expect my cancer will show itself again, which is
why I am ordered for scans every three months rather than six. And they’ve
removed just about every part of me that can be removed, which is narrowing
my treatment options by excluding surgery as an option in the future. They
don’t surgically remove tumors on the liver, or in the lungs, and usually
not the brain either (if they are metastatic). But my new motto is: “plan
for the worst, hope for the best”. All of the reality of my cancer comes out
of the shadow when I come across others who are dealing with it. Within this
past three months I learned that Pastor Jerel’s wife, Cindy, passed away
from cancer. Pastor Jerel baptized me, Al, and the kids, and he also married
Al and I. Cindy was still relatively young. She was a tremendous blessing to
me when I was going through the struggles in my first marriage. Also this
past month a Pastor friend of our Pastor lost a wife to breast cancer. For a
few years I have been following Joyce’s treatment through our Pastor, Ken.
Joyce was diagnosed in 2003 too, and she went through the high dose
chemo/stem cell rescue protocol at City of Hope, which is one that I
considered. Although I never met her in person, watching from the sidelines
as she walked the path of her cancer, I was deeply affected when she passed.
Through every loss I am left feeling survivor’s guilt, I am left wondering
if I will be next. And I feel incredibly small to be complaining about
neuropathy and fibromyalgia when standing in a shadow of death. I think this
is why I have come to avoid writing about how I’m doing- it always stirs up
the sediment, knocks down the floodgates, and the tears are hard to stop.
But they remind me- I’m still in process, still living, still fighting the
good fight, still running the race. I guess it aint really over ‘til the fat
lady sings.

And this past few months has been full of life. Amanda turned 15 and will be
a sophomore already. She’s already asking about driving. She’s starting to
explore colleges too, and plans on leaving home for that. She’s working so
hard to achieve it, I just hope her plans aren’t interrupted by my cancer.
Justin graduated from high school. He’s currently working as a lifeguard for
the city pools again this year, but is now leaning towards joining the U.S.
Army. He’s decided that he wants to be a military police, and the Army is
offering a bigger sign-on bonus and more money for college. A year ago, when
he joined the Marine Corp, that didn’t matter to him. He just wanted to test
himself and be among “the few, the proud”. But he had to get out of the
Marine Corp anyway because his braces were delayed in coming off. He gets
them off later this month, and he can’t go to boot camp with them. He’s just
spinning circles at this point, enjoying the freedom from being officially
separated from school, having a paycheck, and no rent or electric bill to
pay. If he does sign the line for the Army he’ll have to wait until November
at the earliest to leave for boot camp because they require he be 19 years
old before graduating from the MP school. Hopefully he’ll wait to leave
until after the holidays. The reality that our family will never be the
same, this time with the five of us as a functioning family unit is ending,
is sad. But I also feel incredible thankfulness that I have had the time to
see my hard work at parenting start to come to fruition. I just need six
more years Lord, until my youngest is ready to start adulthood. Or maybe
twelve more. I’d like to be there at Jared’s wedding too. But all we really
have is today. Heck, all we really have is this moment. I think when I’m
done writing I’ll go give Jared a big hug and remind him of how much I love
him. (Today Jared and I are home together, as Al and Justin are at work and
Amanda’s at summer school).

So, I’m not any clearer about where things are heading than I was three
months ago. And I don’t feel really anxious about that. I’ve been really
brought to a place of surrender after much struggle. I hope for future
things, but I accept whatever must come. I start occupation therapy this
week, and I hope my commitment to working through that several days a week
will pay off by decreasing my symptoms. I hope to gain just a little more
control of my mind, of my pain, of the usefulness of my hands and fingers. I
hope my scans are clear and I can start on my tattoo again- get that
finished. I hope to maybe explore some Chinese medicine. I’d like to grab
onto something for the future, whether that be through returning to work,
finding an active ministry, or something. But I’d like to have accomplished
all of this by September, and it’s already mid-July. I still have to learn
to be gentle on myself, take baby steps, savor the moment. And at this
moment I just don’t know where I’m going or when I’ll get there. But I’m
sure I’ll keep writing along the way, so keep reading. I know there’s a
purpose.

Always in His Grace~Aimee

Message from Aimee Shaw April 16, 2007

The Sun is on the Horizon
4/16/07

I know I’m long overdue in writing, as it’s been nearly two months since my last update. But, I have a more legitimate excuse for my delay this time, as I was waiting to actually have something significant to share about my treatment progress. And I do have a lot. But, to maintain some amount of suspense, I’ll save the biggest news for last. Besides, maybe through my writing, and your concentrated reading, I might be able to approximate the emotional roller coaster that cancer treatment can be at times. The biggest
difference, of course, being that you can skip ahead. In real life we don’t have that ability, and are powerless to do much other than buckle our seatbelts and hold on.

Since my last writing I’ve had two more chemotherapy treatments and have lost another friend to cancer. Those of you who have been reading along with me since the beginning may remember in November 2004 I wrote about “the incredible shrinking woman”- a woman I met at the cancer center and developed a connection with. I saw her last year at the Relay for Life survivor’s lap, and have seen her a few times around town, enjoying precious time with her family. I was so sad to learn that Linda passed away in January. Also, this month is the one year anniversary of the death of Terri Gray, who was a friend and sister in the IBC battle. One of the chemo nurses
at the cancer center, who has become a trusted friend, shared that a woman even younger than myself recently passed away from colon cancer, leaving behind a very young child. Although I didn’t know this woman, it always hits close to home when I hear about a young mother who is taken by cancer. Cancer surely is no respecter of persons.

You know, God has a way of teaching us grace. Some call it “karma”. Several years ago, when I worked at Aspira, the head supervisor of our office solicited the corporate sponsorship for Relay for Life, as cancer had touched her family. When I was there that irritated me because my interests were in domestic violence advocacy and I felt that because we were a foster care agency we should have been directing our support to causes that directly affected the kids we were working with, and cancer was not one of them. Cancer survivorship was not a world I was a part of, and it was not something I understood, even after having stood on the sidelines as two of
my relatives battled with a cancer that took their lives. Although I still do not believe there was a significant connection between foster care and cancer, my understanding of the cancer community and of survivorship has not only deepened, I have found myself a part of that community, forever changed by cancer. I look back on those months at Aspira and think, “if only I would have known”. Relay for Life is again coming up in a couple of weeks, and I do plan on attending. Last year was the first year I was able to attend, as
previous years my emotional state prevented me from participating. My first inkling to participate came in 2005, two years after my diagnosis. But I didn’t commit to participating then. I tucked it in the back of my mind, and tentatively planned on throwing on some tennis shoes, making the quick lap that Saturday morning, and getting on with the rest of my day. I mentioned it to Al, but when that Saturday came, he had no interest in attending, and it was just as easy for me to not. It wasn’t something I could do by myself.
But that bothered me. Somehow I felt like it was important for me to do thatsurvivor’s walk, to embrace the fact that I was surviving, and was a part of the cancer survivor community. I guess I just wasn’t ready. But I decided that the following year I would participate, and I made a point to let Al know how important it was to me. So in 2006, three years after I unwillingly joined the cancer community and in ‘remission’, I did my first survivor’s lap at the Relay for Life. Al went with me, assigned the role of picture-taker, as he walked right by my side around that track. The kids all stayed home. Even now Justin says that the RFL is “gay” (meaning dumb, for those of you not up on the current teenage lingo). The all-knowingness of 18 year olds, huh? They say we have the biggest RFL event in the state, and
seeing the hundreds of survivor’s walking around the track with their purple shirts on was like nothing I have ever experienced. I didn’t just see them. I was one of them. On both sides of the track were people- friends, relatives, co-workers, care providers, caring supporters, cheering all of us on. Some of the people on the sidelines were crying, and seeing their emotion made me want to feel alright about crying. But the survivors for the most part were happy- skipping, holding hands, laughing. It seemed to be a
celebration for them. But I didn’t feel those emotions. I wanted to sit down in the middle of that track and cry. Just let go and cry. I struggled to not allow the floodgate of emotion to open, because I truly would have becomeoverwhelmed by it. And I know that Al felt restrained too. Even though the misalignment between felt and expressed emotion made the experience seem ingenuine to us both, it was an important experience in learning to embrace cancer, and perhaps life, more fully. I knew I would be back the next year.
And here we are. It’s so peculiar that last year I struggled so much and was in ‘remission’, and this year I have so much more peace about making that lap, and I’m in treatment. The luminary ceremony is something I still am not emotionally prepared to participate in, so may set that goal for next year. But, just like I had hoped last year that this year the kids would get involved, that hope was fulfilled when I took the idea of a team to Amanda and she was instrumental in developing a team of students at her high school
who will participate in the relay. So the kids, at least one of them, will also be a part of the RFL experience this year. That means more to me than I think they know.

But, enough of that mushy stuff. You want to know how treatment is going. Well, I’ve had two treatments since I last wrote. The first of those two I had an allergic reaction to the carboplatin, which is the third bag of chemo I get in a sitting. It was my 7th treatment of that stuff. The reaction started with a sneezing fit, and it turned into a red, blotchy rash that developed in areas of my body. My hands and wrists turned red, the rash encircled my mouth, my eyelids turned red. I was told by the chemo nurses and the Nurse Practitioner that it’s not uncommon to have a reaction to this particular chemo after several treatments. So, the infusion was stopped and
I was given another steroid (I routinely get dexamethasone with treatments), and then Benadryl. After about an hour the reaction subsided and I was able to tolerate the remaining half a bag of chemo. I recuperated on my usual 21 day cycle, and went back in for my 8th treatment on April 3rd- it was to be my last scheduled treatment before re-evaluation of my progress and treatment. So we were all a bit nervous about it. As a family we had come together to pray, my husband and children laying hands on me as we asked God
to completely heal me. The past couple months have really been significant for me, for all of us really, in terms of faith. We have so many changes on the horizon- moving, Justin graduating and perhaps leaving the family, Jared moving on into junior high, a significant family vacation in early June. Big changes. Monumental life events. So of course, my cancer has been on our minds a lot lately. And on one hand, while I am grateful beyond words to be alive to see Justin graduate from high school (an event I doubted to ever
see when I was first diagnosed 4 years ago), I am also cautious about my future. Making the decision to buy a larger, more expensive home has been a real walk with faith for Al and I. We’ve really had to pull through it together. The times when he has doubted, I have been able to minister to him, and the times I have doubted, he has ministered to me. But, as the closing date on the escrow for the new home nears, and as treatment progressed, we were very nervous. There’s a lot at stake. And while the new home represents a grasp onto the future of my family with me being a part of that, it also represents a fear that I might not be there, and that my death
might leave my family in a bad financial situation. I certainly didn’t want to move and then force them to sell the house to move again, when the loss of me would be significant enough. Staying in the home we’re in certainly did seem the wisest choice when considering that scenario. But we have so outgrown the house we’re in, even with Justin’s impending flight from the nest. And then there’s that neighbor. It would take more energy to explain that it’s worth at this point, but basically for the nearly six years that we’ve lived here she has continually harassed us, even to the point of causing emotional duress for all of us. When Justin was in the hospital with
that staph infection a few months ago it reached a head when Amanda called me from the house in tears, as I was visiting Justin. This lady had really overstepped herself again. And I was so tired of the kids not feeling comfortable to play or even be outside in their own neighborhood. Rather than handle it the way perhaps Al would have wanted (and I’m not talking about turning the other cheek), I decided to go a different way with it. So I put my trust in the judicial system (as unto God) and filed for a civil harassment order, certain that it would be granted and this neighbor would get the message and leave us alone. But it didn’t turn out that way. The
week after my 7th chemotherapy treatment, still sick from chemo, I showed up to court with another neighbor who came to testify, and so certain I would fit the role in playing attorney with my limited life experience. It ended up that not only did I not get the order, I was ordered to pay half her attorney fees. That little stunt cost us $1,150. So with our heads hung low and no restraining order, moving was a very attractive decision. This was especially hard for me, as the thought had occurred to me that if I was going to die in the foreseeable future, I certainly didn’t want to do it in front of this neighbor. She’s nosey enough as it is.

So there were weights on both sides, with my cancer really being at the center of the scale. There were good reasons for moving, and for staying in the home we’re in now. Ultimately we came to accept that moving because of my neighbor was not a legitimate reason, and that also staying because offear I might die from cancer was not a legitimate reason either. While both factors had some logical aspects to them, both were absent of faith. And we knew we had to take this decision in faith. But, the day before my 8th
chemotherapy treatment we were still uncertain about the state of my health, my prognosis. We were still maintaining that we could back out of escrow and cut our losses if the scans showed that the cancer had progressed, even though we had made the decision to step forward in buying the new home in faith, and had been praying without ceasing since. The curious aspect of the
incremental measures of faith I was given over the past couple months is that I felt that God was affirming in my heart more and more that we were to step forward in buying the new home. Al was far more financially insecure about it than I was. And I don’t know exactly why that is. Al says it’s because I really want the new house, that my emotional attachment to it outweighs the logical analysis of the decision, and therefore I’m willing to risk everything to have it. I’ll admit there is an emotional attachment, and I would be disappointed if the purchase fell through. But honestly, it’s more than that. Even though Al and I agreed to have a ‘safety exit’, agreeing that if my scans showed the cancer had progressed we’d back out, within myself I felt God telling me that even if my scans did show
progression, I needed to trust Him and move forward in faith. But I’ve always struggled with discerning the voice of God. I am very
self-analytical, almost too much so. The result is that I don’t trust my fleshly motives and realize that I possess the ability to fool myself into thinking I am far more spiritual than I really am. I am still learning how to discern between the true voice of God and my hidden fleshly motives. And it didn’t help that Al was accusing me of being less than spiritual, believing that my “faith” was really a mask for my strong fleshly desire to have the house at all costs. I don’t want to use that word “accuse” in a way that makes it seem so much harsher than it is. I just can’t apply a better word. In truth, I greatly respect my husband for holding me accountable, for questioning my motives. It isn’t like being falsely accused, or like being condemned. We both love one another enough to speak the harsh truth, if
necessary, to affect spiritual growth. So I didn’t feel a need to be defensive about his accusation. In fact, I felt the need to minister to him
the measure of faith God had given to me.

So the day before my 8th treatment we again have this conversation about the house, knowing my scans are coming up and escrow is getting near closing. It ’s settled in my heart and mind, but Al’s doubting. And God uses my measure of faith to minister to my husband. “We have our ducks all in a row”, I tell him, going over the details of our financial situation. “So it’s not like we ’re moving forward in total arrogance with no back-up. With all of them lined up, we may not expect them all to come through, but the odds of them
all getting blown out of the water far exceeds any random chance. If that happens, then even that has to be the Hand of God, and we’ll just have to accept that if/when it comes. So, I’m certain that we are to move forward in faith”. Even as I said that, God’s Spirit pouring through me, I am doubting my scans are going to show positive changes. And that’s the most peculiar part. I am doubting, but have no fear. I am thinking that my cancer is worse, but I am at peace. It’s really hard to paint a vivid picture of it with words, because my relationship with God is so personal, and so intricate. I do know that over the course of the past several months the
words that were spoken to me by that woman at MD Anderson, a complete stranger to me, have echoed in my mind many times. She stopped me as we walked in opposite directions, asking if I was a “believer”, and then whispered into my ear that I should not listen to what the doctor’s say, but should trust God, that He wanted me to know that He was with me, would never leave me, and that I would be ok. Although she never said directly that God was going to heal me, she said that God would be with me, that I needed to believe I will be healed, and that I would be ok. Although I have had turbulent emotional times since then, it’s as if she spoke peace right into
my spirit at that moment, because that overwhelming fear of death has not seized me since. I have clung to her words, not as a hope for healing, but as an affirmation that even unto death God will not abandon me, and I needn’ t be afraid. And I know people have been praying for my peace. So it’s been a blessing to have that peace with God and to not be struggling with Him so much. It seems the struggle I’ve been having these days has been with myself. But with faith and peace, even that becomes small.

So, it’s Spring Break (Holy Week, or whatever you want to call it), and the kids are all home. Justin and Amanda both ask to accompany me to chemo, which is a surprise. They usually show little interest in my treatment and cancer. When I had the allergic reaction from chemo, I came home to tell them about it and Justin wanted to argue with me that I could not have had an allergic reaction. He insisted that if it had been a “real” allergic reaction I would have stopped breathing and would have been given a shot of adrenaline or something. So I was glad he was coming, because I wanted him to hear the nurse confirm that I had had an allergic reaction. I suspect his stubbornness was really motivated by anger and denial about my cancer. So I can’t fault him that. But it is so frustrating to not only not have the support of my children, but to even meet resistance from them at times. Jared stayed home, as chemo is an all-day endeavor. The four of us made home at the cancer center, getting there at 9:30am. Because I had an allergic
reaction the previous treatment, we agreed that I would be pre-medicated with additional steroids to prevent another reaction. I got that. I got the Herceptin, the flush, more pre-meds, the flush, Taxotere, the flush, then the carboplatin. Three chempotherapy agents in one sitting is a lot for the body to tolerate. And this was my 8th treatment with this protocol. My chemo nurse friend had confirmed with Justin that I indeed had an allergic reaction last treatment, and that it’s not uncommon for reactions to occur after several treatments. His resistance began to slowly melt away. I’ve been pre-medicated for this last treatment, so I shouldn’t have a reaction
this time. But when is it that a potential complication doesn’t actually happen to me? I mean, short of death or a heart attack, it seems like I’ve had more than my share of complications over the past 4 years. And half way through the infusion of carboplatin it started- sneezing. Within minutes of that I was turning bright red all over my body. The last reaction was confined to areas, but this time my entire body, even the palms of my hands, turned bright red. And my chest go tight. My arms and hands started to swell. And then my throat started to swell. If you’ve never had that happen, it’s hard to swallow and feels like a rock is stuck in your throat. Of
course the infusion was stopped and I was given more steroids. More benadryl. More steroids. More benadryl. They gave me oxygen too, just to make sure I was getting enough. I must admit at that moment my spiritual peace played a very small role in the unfolding drama. It’s hard not to panic when you can’t breathe well. And within minutes my chemotherapy recliner was encircled with nurses, observing me as they gave me more and more medications to try to counter the reaction. That was frightening and
reassuring at the same time. After several doses of various anti-inflammatory types of stuff and a couple of hours, the reaction started
to subside, and I was released to go home. The remaining half bag of carboplatin was not infused, as the decision was thankfully made that I could no longer have carboplatin. My body was letting us all know that it had had enough of that toxin. And that too produced mixed emotions- relief and anxiety. The chemotoxicity was starting to weigh on me, so I was glad to be done with the carbo, but it had seemed to be effective in at least preventing progression of the cancer, so having to abandon that and potentially move on to another chemotherapy was disappointing. I was actually very glad that Justin and Amanda were there to see that. When they
were little I always tried to shelter them from things that might cause them fear and anxiety, but now that they are older, it seems they need to have that bit of reality. And I was glad that Jared stayed home. He’s still too tender to have to deal with that. Jared asked me nearly every day of his break if I still had cancer. He knew that we were coming to a crossroads, a re-evaluation, but knowing very little about cancer treatment, every appointment I had he would later ask me if I still had cancer. I had to keep reminding him that we would only know after scans, and I wouldn’t get the results of those until the following week. So I know it was weighing on his
mind, and he was more interested in knowing than he has ever been.

So we were all kind of on pins and needles. That bad reaction really took a toll on my body and it seemed especially hard on me. I spent the first several days after treatment not being able to accomplish much, some days not even being able to get out of bed except for basic tasks. But I had to get out for a MUGA scan that Thursday and then PET/CT scans on Good Friday. As much as my faith had been a focus the past few months, it seems like the Holy Week slipped by with little acknowledgement. I was unfortunately in a
fog, shuffling one foot in front of the other just to get through the moment. And I was so sick and strung out from the chemo, that for the first time ever I had to ask that they inject some anti-anxiety medicine into me to get through the PET scan. For more than 30 minutes you have to lay completely still on a small table inside a narrow cylinder, with your hands over your head. Even closing my eyes isn’t sufficient because the lights are so bright in the room that when you go into the tube the light is deflected and the shadow is detected through the eyelids. So I know when I’m in the tube. But if I open them, seeing the walls of the machine so close to my
face and head, I will panic. I don’t know why I never asked for Ativan before, because it really helped me get through the scan, and 30 minutes seemed like ten. Anyway, the following Tuesday, last Tuesday, I went to the cancer center for my weekly shot and blood test. I asked the receptionist if I could get the results of my CT/PET scan, but as is their policy, she said I had to wait to see the doctor. My appointment with Dr. Patel was the following day. But I hate waiting. Besides, I like to know before I go in to see him so I know what to expect, what questions to ask, and am not so overwhelmed by emotion that my logical brain is subdued. So I leave Al in
the waiting room and head back to the treatment room to ask my chemo nurse friend if she can help me- look to see if the scan reports are in my chart and ask if one of the NPs can go over them with me. Kim skims through the electronic chart and comes to the PET scan, reading the impression- “no abnormal suspicious metabolically active foci identified”. Basically what this means is there is no evidence of cancer in my body. It took me a few seconds, but when it hit me, I honestly wanted to drop to my knees. I fought
back the emotion, as my eyes welled we tears. Kim felt it too as we hugged one another. But our shared moment was cut short when one of the nurses from the clinic comes back to get me for the appointment I was there for. And I have to walk back through the waiting room, where Al is sitting. As soon as I come out of the door, tears streaming down my face, our eyes meet. I know
in that brief moment his heart had to have sank. He knew I was going back to try to find out the results of the scan, and here I was coming back through the door, tears streaming down my face. The seconds it took for me to get to him so that I could whisper to him that the scans were clear, must have seemed like some of the heaviest seconds of his life. I honestly thank God
for the strength of my husband. But sometimes that comes across as insensitivity, or lack of care. He asks, “they were clear”. I confirm. It is overwhelming. Then he follows me back into the clinic for my weekly coumadin finger stick. Tears are still streaming down my face, as the nurse is paying no attention. So Kim finds her way back to me, and stands there for a few minutes, turning to Al and asking if he’s even excited. Al stands staunch, holding my purse for me, making no change in his position, or even in his facial expression. “I’m happy on the inside”, he says, “but you just can’t see it”. That’s Al. The incredible weight of the emotions we have had to go
through, the ascensions and plummets, the dark tunnels, have been amazingly overwhelming when considered as a whole. And I know Al’s seeming lack of emotion is really his need to be strong for me. I can’t imagine if I had a husband who was as emotional, or even more so than I. Not only would I have to battle cancer and my own emotional tie to it, I would have to always feel like I had to be there to support him, fix him, walk around on eggshells to keep him stable, make him feel ok. I thank God for my husband as he stands
right beside me, holding my purse.

So the following day, last Wednesday, I see Dr. Patel. Of course, he is very pleased to see that things are looking good. But he’s cautious. My tumor markers are elevated and my Circulating Tumor Cell count is still at a “1”. That’s a big difference from the “130” it was, or even the “11” it was when I started treatment. But even at a “1” it indicates there is still cancer free-floating in my bloodstream. The various scans and their results are just one piece of the diagnostic/prognostic puzzle, he reminds me. And he
isn’t sure how to proceed. He asks me to return to MD Anderson to meet again with Dr. Cristofanilli. Al and I were able to pick up his insurance through his employer this past few months. We pay for the premium, so can only afford him (which is required for me to be covered), and myself. But the monthly loss was justified because his insurance will cover any trip to MD Anderson I need to make. So, that’s not the prohibitive factor it was when I first went to MDA last October. But, we have so much going on. And, we
really can’t leave the kids behind, as we have no one to be there for them while we are gone. So I plead with Dr. Patel to just make contact with Dr. C and discuss my case with him, as there probably isn’t anything Dr. C would say differently than if he were to see me in a clinical setting first. I’ve had all the scans, all the blood work, all the chemo. The only thing going to Houston would do is allow Dr. C to see my face, examine me with his own hands, and perhaps order some further tests to be done while I am there. But
they would all be tests I could do here. So Dr. Patel agrees to contact Dr. C, stating that at this point his inclination is to not give me any more chemotherapies, and it’s best to maintain as many untried chemos in the arsenal as we can, just in case I have a recurrence again. And that is likely. So Dr. Patel cautions me to watch and listen to my body- to report every concern. Don’t be paranoid, but vigilant. I am to see the Nurse Practitioner monthly, have complete blood work monthly, and have scans and see Dr. Patel every 3 months. We’re also watching my spleen, as it’s significantly enlarged. So I’m not loosed from the cancer center just yet. I still have to go weekly for my coumadin check and my blood counts, as my whites and reds are still struggling to come back. But for now, there’s no
more treatment scheduled. I am so thankful that by our vacation in June I should have hair back, my blood counts should be strong, and I should be feeling a whole lot better. I can also start back on finishing my tattoo, providing things continue to improve over the next several months. So these coming few months are going to be very special ones for us as the reality that I am again NED sinks in, we move into our new home, we see Justin graduate from high school, and we venture out into the world on another
family vacation. God has indeed blessed us.

When I finally got to tell Jared that the scan results had come in and that I didn’t have cancer they could see anymore, he didn’t give much reaction. I asked him if he was happy, and he replied, “I don’t know”. We’ve all been through so much with this. It truly is a form of trauma. The other day I was asked by someone how I feel about all of this. Well, I’m obviously happy. But, the strongest feeling really is relief. It’s probably like coming home from a war. You’re happy to get to go home to your bed, your family, but the
greater immediate feeling is relief that you’re out of the line of fire. The joy of embracing your loved one is almost secondary to the relief that you’ re not going to die first. I also have this sense of disappointment in myself- while I had the peace to accept if my cancer was the same or had progressed, I didn’t have the complete faith in my healing. I responded in a human way, a fleshly way, by preparing myself for the worst. But God gave me the peace, and now I’m wondering why I doubted the healing. It’s really hard
to explain. I’m not a “name it and claim it” type of Christian. I’ve seen God heal those who haven’t asked for it, and bring home those who have. So I don’t feel guilty for having a lack of faith- like my healing depends on that. A long time ago I went to a women’s retreat when two women who attending the church had cancer. During a time of intimate worship I felt God telling me to go lay hands on one of the women with cancer who was also at the retreat and pray, that He was going to heal her. He also told me that
He wasn’t going to heal the other, but bring her home. I doubted- “why would You take the one with small children? What if I tell the one that you want to heal, and You don’t? What if this voice I am hearing is not the voice of God and I look foolish”. So I didn’t do it. I sat silently, battling in my own mind, no one ever knowing. On the way home I cried. I knew I had made a mistake and was disappointed in myself for not having trusted God. As it turned out, the woman I was to lay hands on did get healed shortly after the valuable, but painful lesson and I have reflected back on it many times since. That same sense of disappointment I had then is what I feel now. I
guess what I’m saying is that through the peace that God gave me the past few months, He also used that still, small voice to tell me that He was going to heal me, but my logical mind, my fleshly mind, doubted it. Thank God that His will does not depend on me! But I’m not moving forward as if I am forever healed of cancer. I too am cautious, and I also think that I have one more bout with this thing in me. I’m always restrained in sharing such private thoughts and ideas because I truly do not know for certain. None of
us do. But God does, and I can find great comfort in that. So, for today, I am relieved, joyous, and again in a place of trying to reclaim my life from cancer. I appreciate all your prayers and concerns, and ask for you to continue in those, as moving forward has it’s own challenges.

Always in His Grace,Aimee

Message from Aimee Shaw February 19, 2007

I think I’m overdue for a writing. I’ve put it off this time around, not finding anything particularly inspirational to write about. But I guess that
too is cause to write. People who go through cancer are still people. We can ’t be “inspirational” all the time. And I suppose people want to know how I’ m doing. Although, truthfully, very few people have really asked.Right now I’m at a stalemate. I just finished my seventh chemotherapy treatment last week and scans I had done after the sixth showed that while the cancer hasn’t spread, it’s still there. My oncology team is pleased with that result. But there again, the reality of treatment for Stage IV cancer is that it is palliative, intended to extend life, and not to cure. Within that reality there is no end in sight for me. I will never be out of treatment. As long as my body tolerates it and it continues to show some benefit in holding back the spread of cancer, I will be in chemotherapy. But that’s not a reality I have accepted so easily. I still hope for cure, or remission, or no evidence of disease. I want to feel like I’m heading somewhere, like all of these efforts are moving me forward. I can’t imagine being in treatment the rest of my life. I don’t want to imagine it. And so
it’s no wonder I feel so stuck in the mud. I have nowhere to go. I just sit and endure treatment after treatment, scheduling my life around the appointments and side effects. Dr. Patel says nine treatments (I’ve had seven so far), and then I do scans again and go back to MD Anderson to consult with Dr. Cristofanilli. I had nine treatments the first go-round. So by April of this year that will be 18 chemotherapy treatments I’ve undergone in four years of my life. I don’t think people who haven’t gone through it can even imagine it. That’s a heck of a lot of chemotherapy.

So many people have told me I “look good”. I know that’s meant as an encouragement, as a reassurance. I look at myself and I see a pale, bald, overweight, swollen, bag of cancer. I live in this body. And I know what it feels like from the inside. I am living with the constant nausea, the mouth sores, the bone pain, the headaches, the nosebleeds, the overwhelming tiredness, the sleeplessness, the muscle spasms, the awful taste in my mouth, the “hot flashes”, the swollen joints, the itching, the neuropathy,
the constipation. And then there’s the fluid retention, diabetes, heart arrhythmia, and low red and white blood cell counts. But all of that doesn’t show. You can’t see it. But I feel it, day in and day out. I live it. And what few complaints I do utter usually fall on unsympathetic, deaf ears. Even people who hardly know me have apparently seen me around town and have assumed because I am still functioning that everything must be fine. What people who haven’t watched a love one die from cancer frequently misunderstand is that by the time you “look bad”, by the time your symptoms become evident to everyone, your skin is jaundiced yellow, you’re emaciated,
and you can no longer do the grocery shopping or go to the bank, it’s too late. You’ve already lost the battle and no amount of hoping against death is going to change that. People don’t die of cancer. They die of organ failure caused by cancer. And I think I’m a long way from that. But I also know, having stood on the sidelines while so many women have died of Inflammatory Breast Cancer, that it is indeed a slippery slope. One turn in the wrong direction is all it takes to lose foothold, and it’s awfully hard
to regain it. So there’s this constant threat, this constant reality, that at some point this carboplatin/Herceptin/taxotere cocktail I am fixing on every 21 days may stop working. There are many other chemotherapy drugs to try. But, it is a slippery slope. Until something gives I just keep rolling with it and try to expend my energy consciously and wisely. Although I have recently been accused of not having my priorities in the proper place. I just think it’s the exposure of the weak side of my strength and the misunderstanding about where our strength truly comes from. God’s Grace is sufficient.

This chemotherapy stuff is cumulative. It’s like digging a hole at a faster pace than you can climb out of it. It’s like drowning in the ocean, or being swallowed by quick sand. I imagine most people who haven’t experienced cancer treatment first hand don’t really understand that either. They can approximate it through their own inner experiences of living with physical illness. But unless we’re stricken with an incurable and debilitating disease, most of us get well and tend to forget. In fact, most people who are reading this are hardly affected by my cancer. Some are affected in varying degrees. But really, it is me, my three children, and my husband who are eating, sleeping, breathing, living cancer, no matter how hard we try not to. Even in the self-revolving worlds of my children, their lives
intersect with mine on this tightly wound axis of 21 day chemotherapy cycles. We all try to maintain normalcy, to go on as if it isn’t affecting us. And it probably is a lot easier for them to forget about it than it is for me, because I can’t escape the physical reminders. I am the one going to the doctors, getting stuck with needles, getting the five hour chemotherapy infusion. But they are the ones who come home from work or school to find me completely exhausted from the couple of errands or appointments I had that
day. They are the ones, because of their dependence on me, who are limited by my limitations. They are the ones who have to live with the rawness of the emotions of the moment. As lonely as I feel at times, and as frustrated as I get at the lack of sympathy I receive from my husband and children, I also know that it is they who are the most affected both in my illness and in my death. I didn’t fully appreciate what it means to be a caretaker until this past month, when Justin underwent a surgery to realign his lower jaw.
Being a mother and watching my child struggle to come out of anesthesia, in pain, and unable to speak or consume vital nutrients, was hard. It gave me a But having been through over 10 surgeries in my life, I had a wealth of experience in knowing exactly what Justin needed. The role of caretaker is one I took very seriously, and I felt honored to be able to not just watch from the sidelines, but keep pace with him. It was exhausting, and thankless. And I don’t think I will ever see my husband the same. I have
become keenly aware of his selfless service even in times when he too wanted to buckle under the flood of emotion. I am in awe of his strength, where mine has failed. It’s an odd circumstance that cancer both isolates and draws together. This past month others have been flung off the merry-go-round, as our circle of support grows ever smaller, and our little nuclear family clings tighter to the center. This time it has been part of our church family. To put an essay-worth of years of pain and frustration in a few words that also protect and encourage grace, I will simply sum up this experience as “disenfranchisement from the corporate church”, whatever and
whomever that may be. So many changes have happened in relationships I am in, that we are in. Some have been welcomed, and some haven’t. Some have been swift, and some have taken their time.

And even in all of this I find myself being so unforgiving of myself. Only people who know me intimately know how hard I really am on myself. I feel guilty for feeling the way I feel- for being frustrated, and discouraged. I should be grateful that my body is tolerating the chemo, that I can even partake of it. I should feel blessed that the cancer spread to a place that provides me very little side effect, and that I’m not suffering in pain from tumors on my liver, or in my bones, or even worse, debilitating cognitive effects of tumor in my brain. I should count today, the only day I truly have, as a blessing. But I wonder, if I who am facing the reality of death
every time I look in the mirror, am having trouble with that, how much more are people who have no understanding about living with cancer? Some days I wake up and my first thoughts are in amazement that my faith is still intact. All the adversity, all the sticks and stones, all the turbulent waters. I know that’s not me. And I do feel blessed that God has that tight a grip on me, that He doesn’t use this distancing, this isolation, this time of immense trial as a means to completely disengage me from faith. Amanda
asked me today why it is I think God is “doing this to me”. She searches for a purpose, a reason for my cancer. I can’t give her one. But I did tell her that I am certain it isn’t to punish me, or that it isn’t simply because I was grossly lacking in some area. We all will have a cross to bear and who ever knows this side of the Jordan why we are given the one we are given? All we need to do is be willing, and that is hard enough. Especially when we ’re beat down and are standing still in the mud, shouldering it alone. It’s
almost harder just standing under its’ weight. Every aching muscle demands focus. Not to be overly dramatic- identifying with the Cross of Christ is a dramatic endeavor. Yet it’s one we’re asked to undergo with “pure joy”. I must admit I’m not full of joy at this point. And again, my natural inclination is to feel guilty about that, to feel inadequate, spiritually inept, as if I am doing this whole cancer thing wrong. But when I close my eyes and see Christ buckling under the weight of the cross (so much so that another man had to carry it for Him), I feel His resignation, the dark depth of His Divine Destiny. But I don’t feel joy. I don’t think He felt joy at that moment either. The Bible describes Jesus as “being in anguish” as He prayed just prior to His arrest (Luke 22:44). Sometimes I wonder if my
Christian brothers and sisters have forgotten this, have somehow etched into their minds a tainted view of what it does mean to be a Christian. The joy to be found is in the Resurrection, which is eternal life. But we cannot partake of that fully until we have walked through the dark and haunting shadow of death. My Father-in-Law once asked me why I had Dali’s Christ of Saint John of the Cross above my fireplace when “Christ got off the cross”. Because without the sorrow, the humility, the death of the cross, we cannot fully grasp the joy of the Resurrection.

It’s almost prophetic that several years ago, not long after we moved into our home, I burned Isaiah 48:10 (“See, I have refined you, though not as silver; I have tested you in the furnace of affliction”) into a piece of cedar planking that we used to frame that same fireplace that Christ of Saint John of the Cross hangs above. I chose that verse because the whole “furnace” thing was appropriate for above the fireplace, a real life metaphor, and it was one my favorite “furnace” verses in the Bible. But really, I think that verse chose me. I think God chose me. When I sit in my living room I almost always read that verse and the depth that it has penetrated my heart is more than I ever imagined in my witty selection. Yet, we’re making plans to leave it behind- the burned wood plank, that is. After
a couple months of wrangling, or perhaps praying, we’ve decided to take a leap of faith and sell our house so that we can buy a larger home about 3 miles from where we are living now. It almost seems unwise at this point to be moving, and to be moving into a larger home with a higher payment. Here I stand, knees shaking, neck aching, wanting to buckle. But if anything, this is testimony to the degree of struggle that even Al has experienced in trying to balance living and dying. Like Solomon, I rhetorically ask God
aloud, “but what if I never got cancer and we came to this juncture in the road, we took the step in buying the house, and then the day after we moved in Al is killed in a car accident”? We have no guarantees. And it seems we like to create this illusion of control in our lives. Ultimately, everything we do must came from faith, because everything that doesn’t come from faith is sin. That surely doesn’t mean having the kind of faith that we stand on a train track and foolishly believe God will save us from an oncoming train.
But we can’t allow the fear of an oncoming train stop us from crossing the track. At least I can’t. I still have to find a way to walk in faith. And even up until my last breath I hope that it is taken in faith. So we’re getting ready to cross several tracks. Trains are coming. That’s a given. And while they are in sight, we have no idea the speed they travel. They seem far enough away we can make it across. And so we are trusting that God isn’t going to bring them upon us so fast that we end up maimed or killed trying to make it, and if for some reason we do, then even that is by His willing. So for today, as uncertain as the future is, as tired under the weight as I am, and as immobile as it seems I am, the measure of faith I have been given is the backbone that keeps me standing. After sitting down and tapping all that out on my keyboard, it doesn’t seem so bad. I don’t feel so far out. Maybe I just needed to find my inspiration through writing
this time, instead of writing about my inspiration. Tomorrow’s a new day.And Always in His Grace, Aimee

Message from Aimee Shaw January 8, 2007

It’s been a while since I’ve been able to find a block of time to sit down and write. These writing sessions take me hours. And last time I wrote was in early December. Between then and now I’ve had to accomplish all the Christmas decorating, shopping, wrapping, and all that, have had multiple blood tests and physical exams, and have two more chemotherapy treatments under my belt. That makes a total of five now. The very minimum I have to accomplish is six, and that’s providing there’s no more evidence of cancer
in my body. I am scheduled for a PET scan later this month, so that will tell us a lot about where I stand with treatment. Of course, as I always try to do, I am hoping for the best, but am working on my willingness to accept the worst. Like I have shared so many times before, accepting the reality of cancer requires a delicate balance between acknowledging the gravity of the prognosis, but not dwelling on the discouragement that may come with it, but also not being so optimistic that I’m unrealistic- cautiously hopeful. In
the words of a clinical oncologist, my charted prognosis would be described as “guarded”. And that basically means uncertain, cautiously hopeful.

Remaining cautiously hopeful is a lot like riding a bike. Balance. During some fellowship time with my Pastor recently, God spoke to me: it’s a lot harder to balance on a bicycle when you’re sitting still on it. I knew that was a message I was supposed to do something with, but I didn’t know what. So I came home and wrote it down. That was two weeks ago. And since then I’ ve thought a lot about what that really means in my life. I’ve found it peculiar that when I went through treatment the first time I wrote a lot about the metaphors in nature: the drowning in the sea, the swirling eddies stirring up sediment, the climbing of mountains, and the long journeys in
the valleys. And now God is speaking to me through childhood activities: riding merry-go-rounds, running races, and riding bikes. So I’ve reminisced a lot about my own childhood experience lately, trying to relate it to my process of healing. I had a bike. I rode it around the neighborhood and down to the store to buy candy. And I fell off of it a few times too. And yes, the falling was either when I was not moving at all, or moving too slowly. It is harder to balance a bicycle in those circumstances. And it really wasn't fast with total concentration isn’t running away from something, and it isn’t a diversion to fully living life; it’s keeping a balance so that fear
doesn’t completely immobilize me and cause me to fall off. Both times around with this cancer I’ve struggled, wondering if my self-absorption in the daily monotony of life was some insidious form of denial that was causing me to not embrace life as fully as I should given the fact I may be dying. It’s because of one of those bad ideas I’ve been sold- that to live fully I have to go skydive and climb the Rocky Mountains. But now I can see myself as a little tom-boyish girl, tongue peeping out the side of my mouth, my brow all
scrunched up, giving those peddles all I have in the dogged determination to keep momentum so I can maintain balance. I don’t even really know what street I’m on sometimes because I’m so pre-occupied with just keeping the peddles turning. The only thing I’m really sure of is where this bike ride the monotony of life is embracing all the moments in our lives, and therefore the total of life itself. I don’t have to peak a mountain to live like today is my last day. My intensity has always made it hard for me to see the forest through the trees. But this merry-go-round, followed by this bicycle ride, has been God’s way of allowing me to glimpse it, and to find some deep and healing peace.

Each day that goes by I realize even more fully what is important. And it isn’t Rocky Mountain climbing, or sky diving, or even eating chocolate, or smelling roses. I turned 34 years old in December, and I’m still growing up. I’m still having to let go of expectations of what my life was supposed to look like at 34 years old, and am still learning how to settle into myself and appreciate life in a deeper way. That furiously determined bicycle ride down the road this past month has taken me to some interesting places. My last chemotherapy treatment (December 26th) will have been two weeks ago this coming Tuesday, and I have not had one day, or even one hour, to rest since then. It’s as if I was trying to slow down a little, but through a metaphor of a bicycle God was prophetically warning me to hold on tight and start peddling faster. As soon as I got finished putting all the Christmas decorations up, it was Christmas, and then time to take them all down again. This Christmas went by so fast I almost feel like I missed it. But it was also more sentimental than previous years, because the reality that this would be our last Christmas together as a family was heavy on my heart. Justin still has plans to join the Marine Corp. And although his longing for independence and defiance against parental authority causes him to swear he’
ll never come home for Christmas, we know better. But coming home to visit is just not the same. I don’t know if it’s Justin’s impending absence or my progress in processing my cancer recurrence, but connections seem deeper now than they ever have been. The monotonous moments themselves are more “Zen-like”. In reading through some things I had written to Al in previous months, I came across this, dated more than six months ago: “…anyway, I miss you madly. Life is so short, so temporary, so fragile, so unpredictable. I
wish we could all enjoy one another more, love deeper. It seems like it's those closest to us, who mean the most, who we would miss the most, are those we most take for granted, who we most trespass against. I'm really praying about that this week- that we'll cherish more, protect more, grace more. All of us. ..........I know you'll join me in that prayer”. And so it is. Several months and a cancer recurrence later and my prayers are being answered.

This past week Justin was hospitalized for a staph infection that took over his forehead and moved into his eye lid and lower eye socket. He most likely picked it up from the wrestling mat at school. The infection was quite aggressive and resistant to treatment, but because of the location it posed some very dangerous potential complications and he really needed to be in the hospital. That kept me going all week, as I went from spending all night in the emergency room, to bringing him home, taking him back to the doctor again, and then to the hospital. I got about 10 hours of sleep in more than 72 hours of adrenaline-driven peddling, and waited around in numerous
waiting rooms full of vomiting and coughing people. It’s a miracle I was able to hold up and have not ended up in the hospital myself, because my white blood cell count remains lower than normal, as does my red blood cell count. But, by the grace of God the peddling took me past the point of no return. After a traumatic ten hour overnight emergency room visit, Justin and I made it to my car in half a daze. The sun was barely coming up, and it was about 32 degrees outside, so I let my car warm us up before I started
off to the pharmacy to get his prescriptions. In those few minutes Justin had time to consider all that he had been through the previous night- the torturously long wait, the vending machine stealing the remaining change I had to buy him some water, his ever-swelling eyelid, the morphine, and the doctor lancing his forehead and attempting to drain out the infectious fluid. He has never been through anything like that before. And feeling so suddenly helpless over his health, flooded by fear and frustration, he had a glimpse into what I have been going through for over three years now. So he comments about his ordeal, and I remind him that what he had just gone
through is about a tenth of what I have been through with more than 8 surgeries, 14 chemotherapy treatments, 7 weeks of radiation, and probably over a hundred needle sticks. I went through a staph infection too- a complication of my mastectomy. I often feel not only lonely, but frustrated that my family is so close to me, and God has provided me such strength, that they can’t really see the magnitude of what I do go through in my cancer treatment. So many times before when I have had to remind them of my limitations because I am in treatment, Justin has told me, “that’s nothing”, as if chemotherapy is a walk in the park. But now, after spending a night in
the ER with him, knocking down doors to get him some help, and holding his my reminding him of all that I had been through, he reached out his hand, laid it on my arm, and said, “I know. Man, you’re one strong momma”. I was feeling the brief nirvana that comes when you’ve peddled up to the speed you need to be at and can take a brief moment to just enjoy the ride. Take a
deep breath. But it’s more than nirvana. It cuts deep. It was like feeling my head in the clouds and my feet firmly on the ground at the same time. The emotion overwhelmed me. But I only allowed myself a few wandering tears. Without words, I knew Justin acknowledged the tears when our eyes briefly locked. There’s a certain look- that one where the soul is laid bare, and in
some speechless moment we know it’s happened only because we have seen it, experienced it. Connection. But I quickly diverted, wiping my eyes and changing the subject. My spontaneous high-wire juggling act was necessary. It wasn’t because I was in fear of being vulnerable or perceived as somehow being weak. To the contrary- it was a monumental moment to be treasured. But
my consciousness was seized by the subconscious reminder that too many tears can rob the moment of its’ sentimentality. This moment, this perfect moment, so full of grace, could not be overtaken by a drowning flood of emotion. It just had to be left in silence, a moment in time when we saw into one another and connected. Back to peddling.

But there has to even be a balance in the speed you ride that bike. Going too slow can cause instability, but if you go too fast you can become unstable too. And I’m definitely at breaking point. I don’t like starting my week out so exhausted and with too many unfinished tasks that got pushed over because of the crisis last week. Tomorrow the kids all go back to school after their two week break. You’d think that means a break for me, but actually, they all three go different directions and at overlapping times in the mornings and afternoons, so at least twice a day I get to be the taxi. I have another full week ahead of me. I have to make an effort this week to get to work to box up the stuff in my office so someone else can move in. I have blood tests I have to go to the lab for, follow-up
appointments to take Justin to, bills to pay and the checkbook to balance, thank you notes to write, and phone calls and e-mails I need to return. It reminds me of that Robert Frost poem- miles to go before I sleep, miles to go before I sleep (Stopping by Woods on a Snowy Evening). But I just keep peddling. This is a significant month because a lot will happen this month for me in terms of my cancer treatment and prognosis. It’s also the start of a new year, by our calendar. I’ve never been one to make resolutions. But I
am struggling towards a better diet. I have to cut out sugar and lower carbs. The Decadron, which is a steroid, I get with the emotherapy is causing me to have diabetes. I don’t have to inject insulin yet, but I do have to take it very seriously. I always gain weight when I’m in treatment too, because of the Decadron. But I will know within the next couple weeks whether treatment will continue indefinitely, or if I am getting closer to some sort of finish line (this time around). Either way, a break is much needed. I’d like to just coast downhill, not having to peddle so hard to keep the pace. I see Dr. Patel this month too. Maybe he’ll point me to the downhill part of the track so I can take a little rest. Either way, I’m sure I’ll have a lot to share by the end of the month, and I hope my knees and elbows aren’t too bruised and scabbed by then. I hope I can just keep a steady pace and balance. And I hope I have even more of those moments that
remind me I am living fully amidst the monotony.

Always in His Grace, Aimee

Growing up is not an absence of dreaming
It's being able to understand the difference between the ones you can hold
And the ones that you've been sold
And Dreaming is a good thing cause it brings new things to life
But pretending is an ending that perpetuates a lie
Forgetting what you are
Seeing for what you've been told

Ohh truth is stranger than fiction
This is my chance to get it right
And life is much better without all of those pretty lies

Ohh So Goodbye Alice in Wonderland
And you can keep your yellow brick road
There is a difference between dreaming and pretending
These are not tears in my eyes
They are only a reflection of my lonely mind finding
They are only a reflection of my lonely mind finding
I found what's missing in my life
(Jewel- Goodbye Alice in Wonderland)

Message from Aimee Shaw December 2, 2006

I know I haven't written in too long. People tend to think that when you're off work on a medical leave you have freed up eight hours a day that you'd ordinarily be at work. Truth is, when you have cancer you spend an awful lot of time in doctor's offices, at pharmacies, at radiology clinics, and at blood labs. I make an effort to try to arrange my appointments back to back so that I have at least two weekdays to do other things I need to do, but that usually doesn't work out. So my life has totally become about cancer once again. Everyday. I have cancer. Metastatic cancer at that. I try not to let cancer have me, but it tends to.

And yet, there is this vaguely familiar denial. I struggled with this the first time around- I would vacillate between fear and grief to completely forgetting I even had cancer. There was not a whole lot in between. And I'm feeling the ebb and flow this second time around too. Like when I'm cleaning my house, or driving somewhere, or watching television, I forget. I'm tired and have various physical complaints, but in those distracted moments I feel emotionally the same as I did before the reoccurrence. I still walk by the rose bushes and forget to smell them, in a rush to get to my next doctor's appointment. Life as usual. But when I look in the mirror and see my hairless head and fading skin tone, when I sit to endure the numerous needle pokes to collect just a tube of blood and look at my always-bruised arm, I know I have a deadly disease. It's like waking up from a nap when you have to be somewhere- you panic as you look for the clock to see what time it is and wonder, "how long have I been sleeping"? I rub my bald head as I look in the mirror and ask myself, "how long have I been sleeping? Am I in denial"? The first time around these experiences really disturbed me- this searing consciousness that I may be dying and yet I am somehow not participating in that process as fully as maybe I should. But something is different this second time. I am more at ease. I am more complacent, more resigned. I take naps now too, and am working on not worrying so much about the clock on those days. And it's really ok if this path leads me to an end- for now.

I was talking to a very talented tattoo artist recently. We were talking about how long people can sit and endure the tattoo needle. And he shared an observation that he has made: the third and fourth hours tend to be a real struggle for people to sit through, but once they reach the fifth and sixth hours something happens and they can deal with the pain better. If you can sit under a tattoo machine for four hours than you can probably sit under it for eight. I've never gone more than three hours on my own tattooing, but that's been more of function of my artist, and not so much my unwillingness. (By the way- because I am back in chemotherapy I had to stop the work on my tattoo, which was about 80% finished). So I don't know what it's really like to reach that peak intensity and overcome it. At least not in the sense of tattooing. But that phenomena, or natural rhythm, is very familiar to me. And during the times I did sit under a tattoo needle, when the pain was almost overwhelming, I often thought about those who had gone before me in showing the strength and power in the will to win or to survive. Athletes often talk about "pushing past" the mental and emotional barrier that makes them want to quit. And I have certainly had to do that many times going through cancer treatment, whether that be talking myself through the claustrophobia induced by being in an MRI machine, allowing myself to be stuck with needles over and over in search of some blood, or getting myself to the cancer center knowing I was going to be infused with something that would make me sick as a dog. But I haven't really made it to the fifth or sixth hour yet. There has to be a transition period- a period where the battle is both fought and either won or lost. I don't know how long that transition period is, or is supposed to be. But I do know that the longer one is in battle, the wearier they do become. When we're talking about tattooing we are talking about hours. A battle can be fought and won in even less than an hour. But when we're talking about cancer treatment, we could be talking months, maybe even years. And what exactly does victory look like? In terms of tattooing, I suppose it would be meeting the goal of enduring the total amount of tattooing time that you had scheduled. In terms of running a marathon, it would obviously be crossing the defined finish line. But what about cancer treatment? I am not convinced that victory is defined as cure. There is a difference between healing and cure- a bit of wisdom that didn't come to me easily. And although cure is something I entertained for several months in between treatments, I don't think I've achieved either. Well, I know I haven't. So while my oncologist is working on the cure part of the equation, I'm thinking about the healing part. That's where the real victory can be found. I thought that perhaps, because my emotional unpredictability and intensity has decreased so much since the first go-round with cancer, I might be closer to healing than I obviously am to being cured. I was feeling so resigned, so ready to just quit fighting it and to keep a steady focus and pace towards the finish line.

But sometimes you overcome one battle, and another beckons more of your mental energy- like the marathon runner who pushes past the pain and physical exhaustion of the uphill segment of the race to only find that he's overcome by a leg cramp after finding his focus and pace. And so, maybe I did find some semblance of a steady pace, only to be overcome by a leg cramp? I spent Thanksgiving this year in the hospital. It's a rather long story as to how I got there, but basically an emergency room visit the eve of Thanksgiving resulted in me being admitted, in spite of my tearful begging and pleading with the admitting doctor to let me go spend Thanksgiving dinner with my family. I even promised to come back to the hospital afterwards. While they couldn't really keep me, a sound-minded, strong-willed, and able-bodied woman, they did want me to sign an "Against Medical Advice" release if I did so decide to walk out of the hospital. And I was ready to do it. I don't know if I'll be around to enjoy Thanksgiving dinner with my family in 2007. And even if I am, Justin's still making plans to join the Marine Corp, which would put him in Florida in November 2007. So this may well be our last Thanksgiving with the five of us for some time to come. I sure did not want to lose that to this stupid cancer. But when Al said that he would worry about me if I signed myself out, I reluctantly decided that it wouldn't be that great of a Thanksgiving dinner anyway- not if I was as sick as they said I was and Al was distracted with worry. So I cried some more. Sitting there on a gurney in the hallway of the emergency room, sleep deprived, with my head obviously balded by chemotherapy, and in my blood-stained (too many bad needle sticks) Tinkerbell pajamas, I cried and cried. "Ok, doctor", I painfully submitted, "I'll let you admit me to the hospital". He was relieved. After about an hour of hassling the guy, I imagine he was starting to think he'd have better luck selling cars. And I was starting to feel like I was in a game of "mercy" with God. Remember when you were a kid and your so-called friend would twist your hand or arm backwards until you said, "mercy"? The objective was to tolerate as much pain as you could until you surrendered, and then relief would come- like tapping out in wrestling. I know God doesn't play games. But in my childishness I found myself crying out for mercy. Damn it! Damn it! Damn it! How much more do I have to give up here? Even my very life? I still struggle with profound grief and loss at times.

So I spent two days there and came back home, bruised beyond imagination. I was admitted for septicemia- I went to the ER thinking I had a blood clot in my port catheter again, but they suspected it was an infection in the catheter that had gotten into my bloodstream (my white blood cell count was really high). I got dosed with the big, bad boy intravenous antibiotics, and when things looked better, they set me free. The blood cultures came back negative, so I wasn't septic. (I never believed that I was). But I did have a localized infection around my port. I just finished my seven days of prescription antibiotics yesterday. The Tuesday following my hospital release, November 28th, I was scheduled for my third cycle of chemotherapy. But with the port area still being infected, their inability to draw any blood from me (all my good veins were tapped when I was in the hospital), and my newly developed heart arrhythmia, we mutually decided that I was going to skip treatment this week. Besides, the MD Anderson plan was to have two treatments and then scans- the scans should show if the chemo is working, or not. And if it isn't, we were to change to other protocols quickly. Speaking of MD Anderson, the total bill was over $20,000 (not including traveling expenses). I was scheduled to return for a follow-up there on November 28th, but there's no way I can continue being seen there with that cost. I don't regret having gone- it was imperative to my health on all levels. But we were left, after my parents gave us a good chunk for me to be seen there, with an extravagant bill. God has worked through people to meet that financial need in the most unexpected and amazing ways, and I am grateful for that. But it's that kind of gratitude that is so overwhelming that I almost feel guilty about receiving the blessing- like I don't deserve it, shouldn't have it, or my need is not great enough. How odd it is that I am crying out for mercy while God is blessing me with His grace. But that sure isn't inconsistent with the character of God, and if anything, only reaffirms for me that He is in total control.

So my oncology team conceded to do scans before the next treatment. There was no point in poisoning my body with chemotherapy drugs that aren't beating the cancer back, and time is not on my side with this. (If I had the chemo and then the scan showed it wasn't working, I'd have to wait another 3 weeks before I could have a different type of chemo). So it just made sense to have the scans before the chemo so we would know if we needed to continue on the path we were on, or change paths. I went for scans this week and re-scheduled chemo for next Tuesday, December 5th. That extra week of recovery was really needed too. It allowed me to get a lot of the Christmas shopping for the kids done. We're also trying to get our living room re-modeled (painted and stuff). And, it's already time for me to send out Christmas cards. Unfortunately, for the most part I spend that first week of chemo in bed. It's been really rough this time around and I wear out really easily. So I have been cramming in as much busy-work this week as I can, because I know next week I will be out of commission. If I had chemo this week I don't think I would have been up to going to Justin's championship football game, either. His high school team won it's way to the regional, division three championships for the first time in a long time, and it being Justin's senior year, it was an exciting time in his life. I am so glad that I was there for that. Justin didn't get to play because he just got his cast off on Wednesday and his metacarpal (hand bone) is not entirely healed. But his teammates and close friends were there to play, and it meant a lot for me to be there. We have been so blessed to provide them the stability so that they have grown up with the same friends they've had for years, and some of those friends have become like family.

Anyway, I won't get the results of my scans until next week, and I will proceed with chemotherapy on the basis of what progress has or hasn't been made with the two treatments I have had. After Tuesday I won't have treatment again until after Christmas, so that's another welcomed relief. Giving up Thanksgiving was hard enough. I would like to be healthy, or at least to feel decent this Christmas. If I am not able to write again until after Christmas, I want to say that I hope that you're blessed with the love expressed during the gathering of family and friends during the holiday season.

Always in His Grace-
Aimee

Letter from Aimee Shaw September 19, 2006

On Friday, September 8th, 2006, just one day before my mom celebrated her birth for the 50-somethingest time, at 7:30am my conscious mind was suspended and my muscles were paralyzed by the odd concoctions of the anesthesiologists, while my body underwent the trauma induced by the sterile (well, we hope anyway), steel tools guided by the surgeon's hands. A team, Dr. Paul Fuller (a gynecological surgeon) and Dr. Robert Pretorius (a gynecological oncologist), met me in the operating room and through a 12+ inch vertical pelvic/abdominal incision, while the anesthesiologist stood on watchful guard at my head, they kindly removed my healthy uterus and cervix, along with my "previously interrupted" fallopian tubes. Both of my hormone-producing and otherwise healthy ovaries were also removed. But also attached to them were tumors. A 8 x 9 x 4 centimeter tumor (about 2 7/8 x 3 ¼ x 1 ½ inches), weighing 172 grams (.4 pounds) was affixed to my right ovary, while two smaller (2cm) tumors were attached to my left. Unfortunately, these tumors were tested by the hospital pathologist and were found to be metastasized breast cancer. I have joined the ranks of other women living with metastatic breast cancer.

Strangely enough, I hardly cried when told the diagnosis. I think that although I was surrounded by hopeful people, deep down I knew that it wasn't a matter of "if", but of "when", and as hard as I tried to pretend cancer didn't happen to me, the reality of that 80% recurrence rate haunted me on almost a daily basis. That reality was especially grating when so many of the women I had come to know, had spent so many hours praying for, had been taken away from their own families by Inflammatory Breast Cancer. But the saddest part is, at least for me, I had succeeded in putting my best foot forward, had subdued the depression that had left me immobile, and had again gained a certain stride that had me moving forward, further away from cancer. I was smiling again, laughing, appreciating, planning, and most especially, hoping that maybe I was going to be in that 20%. "If you can make it to 2 years you're pretty much out of the woods", he had said. And I was so close- more than 3 years since diagnosis and a year and a half since completing treatment.

But God knew even before He brought me forth in this fleshly body, that this was my destiny. Once again I find that well-meaning people who hardly spoke to me in years prior feel the need to encourage me by reminding me that God is a Healer, and some even share that His will is to heal. But I know that is not the truth, because I have seen "good" Christian women taken away from their families through disease. And if it is in fact "the devil" who is singularly responsible for all our suffering, our pain, our infirmities, our losses, then I would have to point out that the devil seems to be winning this war. No. I am a person who is desperate for purpose, for meaning, and I refuse to submit myself to the vain idea that all of this we are being asked to endure is the work of some meddling and ill-meaning devil. God is in control of this. I know this in the deepest depths of my being. But it has taken me a few weeks to get to this place of even acknowledging, because I was so angry that I didn't even allow myself to go that deep. The pain and burden of this cross is gut-wrenching. It's knee-buckling. And my anger provided me a temporary reprieve before having to really shoulder it- as if by my anger I might scare God away. One thing