Dancing Inside & Out

Angie and me
"Sister Survivors"
Survivor's Luncheon 2009





Hello everyone!

Guess what? I had no doctor's appointments this week. None! No temperature or blood pressure checks. No weigh ins. No baggy, drafty hospital gowns. I've had my first week cancer treatment free! It feels so wonderful!

It feels as though I am dancing inside.

I am still a little sunburned from the radiation but it is getting better. I am currently sporting lots of shrugs. It is a great fashion accessory for breast cancer patients I must say. Whenever someone comments on my new spiky hair look I am quite proud to credit it to my "Short and Sexy Hair Gel." It gets me lots of laughs. Yes that really is the brand name. Being that I am a short person as well I like to think the whole look goes beyond the hair gel. Now all I need to do is wear my diva sunglasses and hair gel at the same time. I just don't know if the world out there is ready for all that "divaness" yet.

I guess the only thing that has surprised me this week is that I've felt a little overwhelmed getting back to the routine. You'd think it would be easy and it is for the most part. It's just the things that I've put off for a while I feel like I now have to pick back up as though nothing has happened. Suddenly I expect myself to be back 100%. It is silly I know and I am getting back into the old "normal" life happily now one day at a time.

Last Friday Randy and I went to a survivor's luncheon. The speaker was Dr. Farris Jordan, a psychologist. He was hilarious. He talked about how the best way to battle bad news is to have a great attitude.

He said whenever people deliver him bad news in his office now they do it with a funny dance and everyone automatically handles it so much better. For example, the secretary might say "The computer is broken" while doing the hokie pokie. We have started doing the dance at our house too. Randy was taking the trash out last week and commented on how yucky it was while "getting down." You should have seen my kids' faces when I said "Lucky you, you have a math test today" while doing a "staying alive" dance move. (Unfortunately the joke was lost on them!)

At the survivor's luncheon I had the privilege of sitting with two friends and former coworkers, Whitney and Amy. I also got to see Angie (my Cancer Vixen reading buddy), give her a shirt and get our picture made together.

For 5 months now I have been corresponding with a survivor I met through a relative via Facebook. She got diagnosed about four months after I did. I watched her go through the same treatments I did right after me rooting her on the whole way. Friday I got to meet her face to face for the first time and give her a box with items to help her through her upcoming surgery. All of this gave me such joy.

This week I heard the song "I Hope you Dance" on the radio. I remember first hearing that song when I was pregnant with Laura. At that time I remember having such hopes for that first child, such dreams and wishes. I will always associate that song with her. It is interesting to hear it now after battling cancer. It truly captures how every moment is precious and how life (good and bad) is best faced with, as that speaker put it, a happy dance. Hope you are dancing too. Lots of love,

Kerry

Radiation Graduation!! GOD is SO Good Ya'll!!

Hello dear friends and family!

Today I had my LAST radiation treatment. Yeah!! I am now officially done with all of my treatments! Whoo-hooo!!

It was a very special day for me. I have to be honest though and say that I did the oddest thing on the way to the hospital. I found myself crying the whole way. Not from joy but from sorrow.

One reason for this was because I started thinking about the future. What would my life be like now AFTER cancer? I had already had my last weekly visit with the Radiation Oncologist on Tuesday. I asked him at the time how I needed to proactively monitor myself from this time forward. Should I have regular scans? Should I pay close attentioin to the tumor marker blood tests? What should I do?

His answer to me was more complicated than I expected. He said tumor markers don't work with all people. He also said some insurance companies won't pay for scans unless you have an outright symptom. His best advice was to know what was normal for my body and to know my Medical Oncologist. Fortuately he told me I have a top-notch Medical Oncologist (which I already knew).

He told me that one of his patients right now probably has about 3-4 weeks to live because of her metastacized cancer. She did not have breast cancer and initially went somewhere out of state. Her doctor there put her through all these tests which were not necessary in her case (like a mammogram) because he owned the equipment (and could make lots of $$). That doctor emphasized that her mammogram was clear without leveling with her about what she was up against. She had not been told the whole truth. And the truth in my case was he didn't know how my cancer would be monitored. He said sometimes as a doctor that is the hardest thing to tell a patient that "You don't know." He did say though that my Oncologist was a good doctor and would do everything she could to keep a close eye on me. This was both very comforting and very sobering to me.

Laura and Leslie heard every word of this and as we left that day Laura suggested we pray for this woman with a few weeks left to live, whoever she was. I was proud of Laura for thinking of it. We prayed for the woman in our car that morning. It prompted lots of questions about life, about death, about heaven and we talked about it all the whole way home.

That was on Tuesday. Today was Thursday. All of this was on my mind as I drove myself to the hospital for my last treatment.

Also on my mind was the fact that I would have to say goodbye to all the special people I saw every day at the treatment center...everyone from the techs, to the fellow patients to the parking attendent.

I was especially sad because I was told by a tech on Monday that Herbert had to take a break from his treatments and would not be in the rest of the week. I thought I might never see him and Virginia again.

What a pleasant surprise it was when I walked into the hospital and saw them both!

After my treatment I talked with Virginia in the waiting room more about Herbert. She told me that he was diagnosed in March. The cancer had started at his ear and progressed to his throat and lung. He has a circular button on his neck he always has to push whenever he speaks. Virginia told me he'd lost lots of weight and was having trouble eating. They were giving him 7 Ensures a day. She also told me that her daughter who lived several hours away has a lung disease and she is worried about her. She said as long as she "had breath in her body and gas in her car," she'd keep bringing Herbert for his treatments. I thought that was a beautiful statment. Many times when I've seen her Virginia would say, "Isn't God good?" with a big smile on her face. I always cheerfully agreed but today it made me stop and think about it further. I was always saying how good He was in the midst of good news. Ever since my diagnosis my news got better and better. Here she is able to say it even in the hardest of times. I admire her greatly. Now THAT is faith!

I was able to give Herbert and Connie each a GOD IS BIGGER THAN CANCER shirt. That meant so much to me. There were lots of hugs. The techs gave me a radiation graduation certificate. In the waiting room I collected my last cookie on my last cookie day. Boy did that ever taste SWEET!

I came to my last day of radiation with tears of sorrow and left with such joy. As I pulled off in my car I was touched that the parking attendent (who waved at us every morning) remembered it was my last day. I proudly showed him my radiation graduation certificate and he was quite impressed. (Yes, Evie I too made friends with the parking attendent).

And so ends my cancer treatments. I will still have at least 3 (maybe 4) surgeries but the battle waged against the cancer is now over. I hope it will be my last. It doesn't mean that cancer is out of my life for good now. No matter what happens in the future, cancer will always be a part of my life.

Please pray for Connie, for Virginia and her daughter, for Herbert and for that woman the doctor spoke about who is dying of cancer.

Please remember most that "God is so good." I have been a witness that it is true in the best and in the worst of times. Lots of love,

Kerry

Tolerable and Temporary

Hello friends and family!

I am now 6 treatments away from completing my radiation therapy! Yeah!! The skin under my arm is black with blisters and I am very red all over my left chest. I am uncomfortable but as I told my doctor today it is all "tolerable and temporary."

When I go to radiation I see the same people. There is Virginia and Herbert who told me about "cookie day" and another breast cancer patient named Connie. We always chat and I enjoy seeing them and the same technicians every day.

Laura has taken to carrying a blanket with her into the hospital. Coats in her view are overrated. Today she and Leslie walked around with it over their heads. Leslie paraded behind Laura her body totally covered except for her feet. It looked like they were part of a huge animal costume. They turned a lot of heads but the onlookers always smiled. Anytime I go to my treatment and they aren't with me strangers come up and ask me where they are at and how they are doing. Guess we must turn a lot of heads (and make a lot of smiles I hope).

Today I met someone new. His name was Will and he has lung cancer. He looked to be in his 80's. He had just finished his radiation treatment and was lying on a stretcher waiting for someone to take him up to his hospital room. He said he'd been married 60 years to the same woman. He joked about how he'd put up with her for all that time (and how his lucky wife hadn't put up with anything). I thought it was very sweet when he said he didn't know what he'd do without his wife or she without him. He asked my name and I told him. He said he'd known another Kerry when he was young in World War II. He said that other Kerry had died on a Pacific island fighting the Japanese all those years ago. That was sobering to me. It made me wonder what all he'd seen in his life. He also told me he was about to start chemo. I told him he would love the nurses in the chemo hut. I said you get to eat ice cream, hang out in a recliner, take a nap and watch TV. He said he couldn't wait to get started.

Just like Virginia, Connie & Herbert he never once lost his humor or his smile. I really admire the spirit of the people I see at radiation every day. They don't complain even when you can tell they are hurting. They just smile and keep going.

Today I also saw a Physical Therapist. I went for an educational session about how to avoid getting lymphadema which is a backing up of the lymphatic fluid in the arm (and therefore a swelling of the arm itself). Because I have had my lymph nodes removed I am at higher risk for it, although the risk is about 25%. The therapist showed me pictures of people who'd had it, some in their legs as well as arms. (It all depends on where your lymph nodes have been removed). I was shocked by the severity of the swelling. Apparently all sorts of things can set it off: heat, mosquito bites, injury to my left arm, a cut, a change in pressure. I have been told now to avoid saunas and shaving with a regular razor under my arm among other things. I cannot have my blood pressure or skin pricked on my left side. I was told to buy a special sleeve if I ever go flying in an airplane or in case the lymphadema ever starts.

One of the things the other radiation patients, the technicians and I often joke about are the floppy hospital gowns we have to wear. Those immodest little things have become a part of my radiation routine. It has fondly brought to my mind a poem called "The Hospital Gown" written by my grandmother Mamma B. It was found after her death in a niche by her easy chair. She passed away from breast cancer in 1989 when I was 18. I think it captures the indignity but necessity (the tolerable and the temporary) of that aspect of the journey. And when you think about it, if Jesus is in your heart and you're going to heaven, it helps everything seems a little more tolerable and temporary.

The Hospital Gown
By Bertha Hutchison Booth

Provided with a smile, I wore it with a frown.
Tied in back like a bib, split all the way down;
So skinny and short,it won't go around
That horrible, hazardous hospital gown.

No buttons to button- no zippers to zip-
Tall, short, fat, thin- all it must fit.
Not even a pocket for hankie or pen,
I hereby declare it a crime against men.
That horrible, humiliating hospital gown.

Now Doc says I'm better- I walk down the hall.
Wearing pajamas and robe- pants, pockets and all.
I'll soon be dismissed and, when out on the town,
I'll praise those who provided with expert renown,
That horrible humanizing hospital gown.

Hope whatever you are putting up with is tolerable and temporary too. Lots of love,

Vanity...The First Thing to Go

Hello!

I am now half way through with my 5th week of radiation. All is still going well although I can really feel it now. I am totally red on the left side of my chest. It feels like a sunburn and is most uncomfortable under my arm. Sometimes I catch myself walking with my left arm sticking out funny to prevent the friction of skin on skin in my armpit. The doctor said I had 5 more treatments in that area but they are going to postpone them a few days to give that area some time to recover. They have been treating the clavical area of lymph nodes below my neck as well. Starting tomorrow they will also be concentrating the radiation on my masectomy scar. I have 10 more treatments to go. I can no longer wear a bra because of the discomfort.

I remain in a state of menopause. The doctor said I may not know for 6 months whether this will be permanent or not. The past month I have noticed lots of fuzzy hair all over my face. It is even all over my nose. A couple people have commented on it. Randy and I joke that I'm so hairy "the moon must be full" like I'm a werewolf or something. We just laugh about it. I suppose this is due to the drop in hormones. After months of no hair it seems a little bizarre.

Yesterday I saw an interview with Michael J. Fox on Oprah. He was talking about Parkinson's Disease and how it makes him constantly shake. He said after his diagnosis that "Vanity was the first thing to go" and that now he doesn't care so much about what he looks like or how people perceive his physical appearance. I find myself now trotting daily through UT hospital with my very short hair, an uneven chest, fuzzy face and false eyelashes (that have been known to pop off unexpectedly from time to time) without much thought about my appearance. I have laid on the radiation table so many times now with my chest scars exposed that I don't flinch at all when three technicians stand over me lining up the crosshairs for my daily radiation treatment. It has all become a strange sort of routine. It is a bit freeing really.

That's not to say though that it doesn't bother me at all. I see people look at me differently sometimes. I've had several women just come up to me recently and start talking about how they are survivors too. They don't even ask if I have breast cancer. I guess they just know it on sight. One time I even had one woman start showing me her masectomy scar in the middle of a retail store. It guess those scars can be a strange source of pride, really. Like a soldier showing his battle wounds it means you are a survivor in the truest sense of the word. I am fortunate that the scars from my breast cancer are temporary. The shakiness from Parkinsons is not. The lesson learned however is the same. I knew I was not defined by my physical appearance, but sometimes (with so much of my life revolving around my treatments) cancer starts seeming like that is my life. You're poked, prodded, stuck with needles and people stare at your scars all the time. Cancer is very humbling and none of it (except your attitude) can you control. We are not defined by our adversity though. We are so much more.

Last week I saw my Internist. He said in 35 years of family practice he had never seen a cancer like mine. At first I was left to wonder if this was a compliment (reminiscent of the remark of how I was "perfect" for chemo). According to the pathology report my sentinel lymph node was the only one with any sign of cancer and singlehandely soaked it all up by itself. (Way to go Sponge Bob!)He said if it hadn't been for my dislocated shoulder and the size of that gygantor lymph node that we may not have discovered the cancer. I had always thought of the shoulder accident as a "red herring" that kept me from diagnosing the cancer sooner.

So I guess it's just all in how you look at things. Vanity is indeed the first thing to go. And what's left is a new sort of self assurance, a new sort of self worth that confirms that who you are is so much more than what people perceive you are or any hardship you are going through. Michael J. Fox put it this way. He is much more than Parkinsons but Parkinson disease has helped define him. It has brought new people into his life and caused him to make new choices that he otherwise never would have made.

I Corinthians 2:7 says "...we speak of God's secret wisdom, a wisdom that has been hidden and that God destined for our glory before time began. None of the rulers of this age understood it, for if they had, they would not have crucified the Lord of glory. However, as it is written: 'No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.'"

No matter what stumbling blocks we may be facing big or small, God sees the big picture. He sees the true essence of who we are and where we all fall in His master plan. Doesn't it do your heart good to know that? Lots of love,

Kerry

These Feet are Made for Walking!

Hello dear friends and family!

This is probably going to be my most controversial post. I hate controversy. I avoid it like the plague in fact, but when I started writing this blog I promised myself and others to be honest about the experience. So I am just going to lay it all out there. Cancer should unite us, not divide us. Yet last week I found myself psychologically torn in two.

First a quick update. I am still doing well physically & emotionally. My skin is slightly red from radiation and when I stretch my left arm I can feel some stinging beneath the skin but still nothing major. Randy, Laura and Leslie are doing well. Saturday was "kid's day" at our house. We went to the zoo, played arcade games and ate pizza at Mr. Gatti's. According to my kids it was "the best kid's day ever," which was absolutely priceless.

Now let's dive into the mental wrestling match I've been having all week. Ever since I was diagnosed I have wanted to do something..anything to help others with breast cancer. Hence the Tshirt ministry was born. One of the first things I looked forward to doing with the ministry way back in January was Race For the Cure, walking side by side with dozens of us in our "God is bigger than cancer" shirts. To me it wasn't so much about the money (although raising money for breast cancer is huge) it was about the witness to others. From a selfish standpoint it was also about being with friends, loved ones and a sea of other breast cancer survivors...my happy victorious day in the sun, showing the world that GOD IS BIGGER THAN BREAST CANCER.

Okay, now to the sticky part. No matter what side you fall on in the abortion debate, please hear me out.

A good friend of mine informed me last week that the Komen foundation (which oversees the race) supports planned parenthood. Both of us did some research and discovered that a couple affiliate offices of Komen (usually in rural areas) are giving planned parenthood $ for breast health screenings. The concern out there is that once they receive the $ planned parenthood can do whatever it wants with it, even funding abortions.

There is a video out there that says women who have had abortions are at an increased risk for breast cancer. Another concern it voices is that by giving $ to planned parenthood (which does abortions) Komen is in fact promoting breast cancer, not defeating it. Here is a link to the video http://www.lifeissues.org:80/AbortionBreastcancer/komen/index.htm

I had never heard of abortion as a risk factor before. What I do know is that there are several risk factors, some you can control and some you can't. And even if you live the perfect lifestyle, you can still get cancer. As I watched the video I winced because abortion was the only risk factor it focused on. I understand why the producers focused on it. They felt like women had a right to know and the issue was under reported. Still I had to wonder if I'd had an abortion how would I have felt watching it? With them reasoning that Komen is somewhat "responsible" for breast cancer what is the inference then about the woman herself? It's not so much what the video was saying. It was what I was FEELING. I have long wondered if people ever think to themselves, "Why she's 20 pounds overweight. She asked for her cancer." I know people aren't really thinking that, but it has been a human/gut reaction of mine ever since my diagnosis. And so the video bothered me. If I felt that way (and I'd never had an abortion), how would a woman feel who had an abortion, got breast cancer and then watched that video? And then I remembered the words told to me by the first sister survivor I called to inform of my diagnosis. "You don't deserve this, Kerry. Promise me you won't think you deserve this." Obviously she'd had the exact same emotions. No woman should feel like she deserves breast cancer.


I wish the video had given more resources to women who had an abortion, a phone number or resource they could talk to. Still many of the concerns raised by the video about Komen did bother me. I want to raise money for breast cancer and breast cancer only. I am pro-life and so all of this put me in a tough situation.

Do I walk? Do I not walk? Do I even protest? I have already registered. I've already met fellow breast cancer patients who want to walk with me on my team. (And I can't wait to walk with them!) I want to reach people with my message about God whether they are pro-life or pro-choice. I know and care about people who could be on either side of the debate. WHAT do I do?

So little shy me (who hates conflict) showed up at a team captain's meeting for Race for the Cure. I asked one of the local directors my question. Here's the answer I got:

75% of the money raised by Race for the Cure goes to the National office strictly to fund breast cancer research. It is from this research that tamoxifen and other life saving drugs have been found. 25% stays with the local branch for their overhead, education, breast screenings, and treatment. The national office does not give any money to planned parenthood.

A couple affiliates in very rural areas where there is no hospital or medical facility give $ out of their local 25% to planned parenthood to perform breast screenings. According to the director those affiliates (as well as the recipients of the money) must account (on paper) that the money has gone as intended or they will loose grant money. Could someone fudge this on paper? I suppose so. The director did say that Komen is focused solely on one agenda and one agenda only: curing the world of breast cancer. She assured me that EVERY CENT of the money raised in Knoxville will go to fighting breast cancer.

There is also a nationally recognized Christian food chain that is sponsoring the event locally. I talked to their Marketing Director (and a friend of mine) and they are very comfortable that they money is going only to the bc cause.

These are the viewpoints of the video and Komen as well as my first impressions.
At first this issue was so deflating to me, but now I am glad it has come out. It has raised an interesting theological debate.

For example, suppose I gave money to a homeless man on the street and told him it was only to be used for food. Suppose he went off and used it for something else (drugs, alcohol, a criminal act even). Suppose he only spent a fraction of the money on something I disagreed with and all the rest on a good cause? Suppose I also suspected he might do something bad with the money but gave him it anyway with hopes he would not? Am I doing something charitable or am I doing something wrong?

SO I've prayed about it and here's what I've decided to do:

I am going to walk in Race for the Cure. Komen has done SO much to advance the fight against breast cancer. I want the message from the shirts out there and that is the best forum in which to do it. If people want to give, give.
If they don't feel good about the race, I understand why. Everyone on the team can do what they think is right about the fundraising.

In addition I would like to take part in some other activity to fight breast cancer that those unable to do Race for the Cure can participate in. Any money raised from that event would go toward the Tshirt ministry or to St Mary's Medical Center where I was diagnosed and had my surgery. I'll even sign a petition encouraging Komen to seek another solution in rural areas rather than use planned parenthood. This is the decision I have come to and I am at peace about it. (Now I hope I don't have you angrily picking up tomatoes and throwing them at me and into your personal computer). ;)

Here is where I need YOUR help. Just DO something. Give where you feel led to give and most importantly PRAY. Pray that we reach people. I want people to come up to us in our God shirts during any walk we do. I want us to be able to tell them that the only thing we can count on in life is God. That doesn't mean I will never have cancer again. It doesn't mean that we'll never have any problems. What is does mean is that we will always have HIM. HE is bigger than cancer. He is BIGGER THAN ANYTHING!! If only one person, ONE person gets that....it will be SO worth every minute of my breast cancer fight. Lots of love,

Kerry

Radiation Week #2 Done & Counting Down to Cookie Day!

Hello friends and family!

I have now gone to radiation 5 days a week for two weeks. 10 treatments down 23 to go. I still am not experiencing any discomfort. In a two week period I will have seen 4 doctors (my Medical Oncologist, my Surgeon, my Primary Care Physician and the Radiation Oncologist). This has become fairly routine and I am looking forward to the day when I can go a whole month without a doctor's appointment. All the doctors say I am doing well and very pleased with my progress. Needless to say Laura and Leslie have been real troopers and well behaved except for one appointment last week when they got into a pillow fight in the doctor's office and hit the doctor! Oh the insanity of it all. Fortunately the doctor has kids and a great sense of humor.
I can laugh about it now although I didn't then.

It is funny what becomes routine. My kids usually sleep in their clothes for the next day to help us get off early enough in the morning. They looked at me strangely Friday night when I said they could put on their nightgowns to sleep in since we didn't have a treatment the next day. We usually eat cereal out of the bag in the car for breakfast so today I made a point of fixing a big, sit down breakfast of bacon and eggs for them.

Thursday has become an exciting day of the week for the girls because it is cookie day at the treatment center. They have all sorts of cookies...peanut butter, chocolate chip, oatmeal raisin, macadamia nut. There is one elderly couple we run into every morning. The husband has cancer. You should have seen the smile on his face when he told my girls about cookie day. It is amazing to see what a difference even the smallest, thoughtful gesture can make. Now every weekday my girls are counting down to the next cookie day.

It may sound strange to say it but "counting down to the next cookie day" has become a sort of philosopy of mine I adopted early on in my diagnosis and has served me well ever since. I think if you are fighting something awful like cancer it helps you to always have something coming up that week to look forward to. For me it might be a getting together with family, a date night with Randy, a Mom's Night Out with friends, our coop, playdate with other kids or many different things. But it always helped me get through the day, even the stinky ones.

Tuesday night at the young breast cancer survivor's meeting I met a girl who was just diagnosed. She was starting her chemo treatment the very next day. She was obviously nervous. She said she would have rejected doing the chemo altogether if it wasn't for her family. She asked for some advice from us. It told her how I lived a full life on chemo, that she'd get through it. But the most important advice I gave her was that you should always have something to look forward to. That has made the biggest difference for us. Laura and Leslie are battling cancer too and for them it is cookie day. Thank goodness for cookie day! Hope you have your equivalent to cookie day to look forward to. Lots of love,

Kerry

Radiation Week 1 Done!!

Hello!

This is just a quick update to let everyone know that my first week of radiation went really well. Every weekday morning Laura, Leslie and I get up and make the 30 mintute drive to the hospital. The girls sit in the waiting room right off from my treatment area and do a little homework within sight of the technicians. The whole process (including my changing into the hospital gown and out) usually takes about 30minutes. I have 4 purple marks on my skin that the techs use to line me up for the treatment each morning. I jokingly call the marks my crosshairs. I am not experiencing any discomfort as yet. We usually end each treatment with a trip to the hospital gift shop where the girls pick up a 10 cent candy or treat for hanging in there with me.

This week I dropped the bandanas and the wig. It is August afterall and hot. It feels good. I look like an army recruit but it's just fine with me. I get ready in the mornings now in half the time. :)

The Knoxville Race for the Cure is coming up October 24th. I have started a team called the GOD IS BIGGER THAN CANCER team and entered our breast cancer shirt into a Tshirt contest. (I think we should win it but of course I am a little biased). I will be sending out emails in the next week inviting all who are interested to join us either through donations or in the walk itself. I am very excited about it. I hope if there are several of us in our shirts people will see what a difference God has made in our lives and want that same blessed assurance that only He can give. Lots of love,

Kerry