Arizona 2010 Susan G. Komen 3 Day Walk - Survivor's Circle at Closing Ceremonies

Leaving the stage at the end of ceremonies. That is me just to the left of the flag pole.

All of the other survivors joined us on the stage - hugging and dancing at the end of the closing ceremonies. We didn't even have to talk, we just looked each other in the eye and started crying. All of us had heard the word's "it is cancer" and all of us had to tell our loved ones of the diagnosis. It is this shared experience that made all of us have to walk. We are all committed to doing all we can to make sure that someday no one else will ever have to go through what we have gone through. Lots of tears and lots of love.

There were eight of us in the Survivor's Circle. It was a huge honor to be asked to participate.

"A World Without Breast Cancer" is what the flag says.

That's me just to the left of the flag pole

Walking in with our flags - I carried the "commitment" flag

Looking up at the center flag "A World Without Breast Cancer"

Being part of the Survivor's Circle is definately one of the top five highlights of my life. It was emotional in so many ways. I was proud to be there as a survivor. I was honored to represent those who are no longer with us. I was amazed at the dedication of the other walkers and crew members. I was tickled pink to be a member of Team Grand Canyon. I was just so thankful that my parents were able to experience it with me. I was hopeful for my future as a survivor. I was and will continue to be committed to ending breast cancer.

Click Here for a picture of me from the 3 Day web site. While you are there feel free to donate to Team Grand Canyon. We hope to raise $30,000 this year so every little bit helps! So, far we have only raised $10 so we have a ways to go. Glad we have eleven months!

I'll have some more walk photos posted soon.

Surgery Date Is Set

January 20th it is. Back when it first came up January seemed a long time away. Now it is less than four weeks. I can't believe it is two and a half years since my diagnosis and the fall out continues. I saw my oncologist a couple of weeks ago and he was please I was having my uterus and last ovary removed. He said I will have a better chance of not having a recurrance. So, there is some good news. He said after the surgery we will discuss whether I will continue to take tamoxifen or will start taking something else. Since I am no longer having any problems with tamoxifen other than the issues the surgery will take care of, he said that he thinks I will stay on it. My doctor who is doing the surgery says that with my previous endometrial surgery and ovary removal she is pretty sure that she will have to complete the surgery adominally which means a longer hospital stay and longer recovery time. With the first surgery I was in the hospital three days I believe and there were staples involved. Staples!! I didn't even know that was possible. I am already psyching myself up for it this time - see picture above. I was a bit worried about how I was going to manage for the couple of weeks or so that I will be down and out but of course my wonderful parents said they will come up and take care of me. I have no idea what I would do with out them. I am also working on losing some of the weight I have gained since the diagnosis. I was doing pretty well and had lost 20 pounds before my birthday last week and Christmas this week. I'd like to lose another 10 before the surgery so am back on the diet tomorrow. I still plan on putting up pictures from the 3 Day Walk. Check back in the next week or so for some good ones. The pic above is actually from the walk - it was one of my favorite signs!

The AZ 3 Day Walk is Over

What an amazing experience with an amazing six women. I was so honored to walk with them. I was honored to be one of the eight walkers in the Survivor's Circle. It will go down as one of the highlights in my entire life. I can't believe how lucky I was to be asked. I was worried about if I would trip or goof up in some way and then when I was actually carrying the flag in front of all the people I was just so tickled to represent the walkers that I didn't even think of anything else. Team Grand Canyon did an amazing job and I truely enjoyed my time with all of them. How blessed am I to have such an amazing women to walk with? I will have pictures up soon and some more blogs on my thoughts of the event.

Rehearsal is over and I did not trip!

The weather is beautiful and it was exciting to see everything being set up. I can't wait until tomorrow.

The Bags Are Packed and the Car is Pointed South

I can't believe the Arizona 3 Day Walk is here. It seems like we have been fundraising and training forever. I really want to give out a great big THANK YOU to all of you who gave our team such generous donations and to all of you who attended our events. The hard part is finished and now Team Grand Canyon gets to enjoy a few days of strolling around the Phoenix area.

I am very excited to have a chance to share this event with my close friends and the best part of the whole thing will be the time I get to spend with them laughing and walking. Thank you ladies. Thank you for all of your fundraising efforts, thank you for the great emails keeping the team informed, thank you for buying plane tickets and taking time off work to be in Arizona for a long weekend in November, thank you for all of the training miles you have done, thank you for all the Thursday team lunches, thank you for the raffle prize donations, thank you for making enchiladas (!) so we have a homemade meal the night before the walk, for all the logistics planning so we have a place to stay tomorrow night and rides to and from the event, thank you for your commitment to end breast cancer, thank you for being my friends, and thank you for walking next to me these next few days. As you all know, I'm not always very good at expressing myself but please know, having each of you on the team means more to me than I know how to say. There is no doubt that having cancer sucked but if I had never been through it, I would not have had this amazing experience with you. I am so happy that back in 2008 you could not say no to a bald woman. And am happier that you enjoyed it enough in 2009 that Team Grand Canyon is back in 2010 and more than double in size. If I have learned one thing in the past two years it is that one person can make a huge difference in the world - just think of what the seven of us have accomplished!

Here's to a walk full of laughs, sore feet, walker stalkers, tents, cheering, community showers, singing, portapotties, a few tears, lots of pink, making new friends, and the knowledge that each day bringing us that much closer to a cure! We walk because we can and because everyone deserves a lifetime.

The AZ 3 Day Walk Starts on Friday!

The walk is finally here. The seven of us have raised just over $19,500. Not quite our goal of $20,000 but close enough. The logistics have been worked out and it sounds like we will have quite a few of our friends and family cheering us on at the cheer stations. I am just so excited that I can hardly stand it that my parents are coming for Saturday and Sunday. They made us some very generous donations and were a huge help as our cooks at our fundraising BBQ.

I drive down early on Thursday morning and have to go a rehearsal of the opening and closing ceremonies that afternoon. I hope that if I am going to trip and drop my "commitment" flag, I do it at the rehearsal and not in front of the 1,200 walkers.

I will be posting pictures on facebook during the walk and will hopefully be doing some short live blogs here. My camera batteries are charging right now and I have a new phone with internet access.

This year I have a much warmer sleeping bag for the two nights in the tent so I plan on getting more sleep. I'm bringing warmer pajamas also. I was tickled last night when I was able to fit my huge sleeping bag into my duffle. Not much room for anything else but that is OK since the bag also takes up most of the 35 pounds we are allowed to bring.

I hope to at least walk more than I did last year and I'd love to complete every mile on Sunday. I have a better plan to avoid blisters this year which will make the walk much more enjoyable. I had horrible blisters on the bottom of my feet starting on the first day in 2009. It made walking the final day pretty miserable. Not this year!

Have to run to watch Conan! Nice to have him back.

Health Update

As some of you who read this blog knows, I have been having some new health issues these past few months. I haven't really mentioned them on here because I just hoped they would go away. Plus, let's face it, I seem to always have something to complain about and I didn't want this blog to be all about what is wrong with me today. Well, this problem is not going to go away without another trip to the hospital.

Long long story short - I started taking tamoxifen two years ago right after I finished chemo. I'll take it for three more years. It was prescribed for me since my cancer was 100% estrogen positive and tamoxifen blocks the effects of estrogen. So, I take it to decrease my chances of having cancer return. Now, like all cancer "treatments" that the medical industry recommends, there are all sorts of nasty side effects of taking tamoxifen - more than I want to list here. All of the literature says that the benefits of tamoxifen in treating breast cancer far outweigh the ricks of serious side effects. Two of those side effects though are endometrial cancer and/or ovarian cysts. Especially in women who were pre-menopausal when they were diagnosed with cancer.

Starting in August I started showing the symptoms of potentially having one or both of them. I got into a doctor pretty quickly. She right away did a biopsy that day and sent me for an ultrasound. The biopsy results came back inconclusive and the ultrasound showed something wrong with my ovary (I've only had one since the other was removed in my 20s) plus an enlarged uterus. She then signed me up for out patient surgery so she could go in and get a good cell sample for another biopsy and so she could take a look at the ovary and the uterus. This was a couple of weeks ago. She said that if I did not hear from her by the next Wednesday, the biopsy results came back OK.

I have a side not here - I have obviously not had good news from biopsies in the past. Would it have been so hard to give me a call either way just to let me know? It would have saved a whole bunch of us a lot of worry.

We met with her two weeks later and as soon as she walked into the room she told us that there was no sign of cancer! Great news! On the other hand, she said, my ovary is pretty much rotten and needs to come out pretty quickly. And since I then won't have any ovaries, there won't be any reason to keep the uterus. Plus if I don't have the uterus removed now I will continue to have the issues I am having, they will continue to get worse, and it will lead to more problems probably sooner rather than later. So, she says I need to have a hysterectomy to take it all out. (I asked her for any cons to have my uterus removed and she could not give me any other than not being able to have kids which I won't be able to have anyway. I will be doing some research to see if there are indeed no other cons.)

It means I may need up to six weeks off work to recover. I asked her when it needed to be done and she said she would want the ovary removed by the end of the year. I asked if we could hold off until mid-January because now is a super busy time at work and she agreed to that time frame if I have another ultrasound before then and now. As long as the ovary has not gotten worse, we can wait; if it has gotten worse, we do the surgery early December.

So, those are my exciting upcoming plans - an ultrasound the week before Thanksgiving and a hysterectomy in January.

I am so tired of surgeries and medical bills and missing work and worrying, that I am really bummed about the whole thing, but by golly the news could have been much worse. I truly believe I just need to get through this last dip and it will all be uphill from here. It has to be, right?!

Susan G. Komen 3 Day Walk Fundraising

Team Grand Canyon hit the $17,000 fundraising mark today! All seven of us will have raised the $2,300 minimum amount to be allowed to participate in the walk which is only 3 and a half weeks away.

It is not too late to donate! :)

Linda's donation page

I have been training as much as I can with a busy work schedule and some more health issues. I hope to get some good miles in this weekend.

Some fun news - I have been nominated and chosen to be a member of the Survivor's Circle this year at the opening and closing ceremonies. I am will be carrying the "commitment" flag and am very honored to be chosen.

Insurance Fun and Games

I know it is a blessing that I have a good health insurance plan. I did not have to make any health care decisions based on financial worries. I can't even imagine the struggle of going through a cancer fight with no or inadequate insurance. So, while I am going to complain about my health insurance company, I know there are others out there wishing they had my insurance even with the headache of dealing with them.


So, back in July I was having quite a bit of back pain. One day while I was massaging it, I felt a lump just to the right of my back bone. The last time I found a lump, it did not go well. I wrote about the ensuing PET scan a few posts back. Fortunately, the results came back clean.

I received a claim report from my insurance company about a month later. It said that my PET scan was not covered by my insurance and that I was responsible for the entire $6,700. My breath caught in my throat but it had to be a mistake - right!? I pulled up my coverage plan online and right there it said that PET scans are covered at 90% after my deductible. I also noted that the coverage said that if I used a preferred provider, it was the provider's responsibility to make sure that the scan was pre-authorized. Excellent news.

I called my insurance company first. I talked to a nice lady named Carolyn. She looked up my claim and agreed that it was indeed covered under my insurance plan but that the radiology center did not have it pre-authorized. She said that they could at this point try to get it post-authorized. OK - strange that they did not get a pre-authorization but now I have a starting point to get this fixed.

I called the billing department of the radiology center. No, I was told they would not be the one's to have it pre-authorized, it would have been my doctor who would done it before even having the PET scan scheduled.

I called the financial lady at my oncologist's office. What?! They would never be the one's to get the pre-authorization, they would send my medical records over to the radiology center and it would be the radiology center who would call the insurance company. Great. The financial lady did give me a phone number for the supervisor of the department in radiology that gets pre-approvals.

I called the supervisor of the department in radiology that gets pre-approvals for PET scans. The supervisor was busy but I did talk to a helpful lady who was able to pull up my account. Here it is - the billing department should have been able to see this also - but we did call for a pre-approval and "Jeff" at your insurance company said it did not have to be pre-approved. The helpful lady said that she would call again and have it post-approved. She said that if I received a bill from them for the entire amount, I should call the radiology billing department again and they would put the bill on hold until this was all figured out.

Great - this seems to be taken care of. Two weeks later I received a bill from radiology for the entire amount.

I called the radiology billing department to put the bill on hold. Another nice lady looked up my account. They had tried to have the PET scan post-approved but my insurance company told them that the procedure was not covered under my plan. She could give me an extra two days to pay the bill but I need to start making payments in two weeks. And they will only give me 6 months to pay the bill so my first payment needs to be over $1,000. Wonderful.

I called my insurance company - and got Carolyn again. Her lucky day. She looked up my account. Yes, she can see where "J" (for "Jeff'?) told Vicki at the radiology department that the PET scan did NOT need to be pre-authorized. However, it did need to be pre-authorized. She did not at all see my frustration of the insurance company saying BEFORE the PET scan that it did not need to be pre-authorized and now saying AFTER the PET scan that it did need to be pre-authorized. Are you kidding me? But it gets better. So, she says that radiology will need to have it post-authorized. I understand, I say, they did try to have it post-authorized but when radiology called the insurance company, they were told that the procedure was not covered under my plan and the insurance company would not let them post-authorize it. Yes, Carolyn says, she can see where radiology called and was told that the procedure was not covered. The person at the insurance company, however, was "looking at a screen in the new system where it looks like PET scans are not covered but if they look at a screen in the old system it shows that it is covered" She suggested I call radiology back and that the person who calls this time to have it post-authorized should be persistent and ask for a supervisor. While Carolyn was always very friendly, she never did acknowledge that what she was telling me was just beyond frustrating. I thought about it later and working for this insurance company, she must spend 8 hours a day dealing with their ineptitude or at least their attempts to avoid paying for insurance claims. I am sure she has seen it all and worse.

So, let's recap. Radiology calls to have PET scan pre-approved. Insurance company says it does not need to be pre-approved. Linda has PET scan. PET scan claim is denied. Insurance company says PET scan needed to be pre-approved and now needs to be post-approved. Radiology calls to have PET scan post-approved. Insurance company says PET scan is not covered and won't let radiology post-approve the PET scan.

I call the supervisor of the department in radiology that gets procedures pre-approved. She pulls up my file. She points out that they have tried twice now to have my PET scan authorized and the insurance company refuses to let them. "I don't know what we can do for you at this point." Well, I hate to say it but I got a bit teary eyed as I begged her to help me. I pointed out that I had no idea that to do at this point either. She took pity on me and said she would give a call about my dilemma to a supervisor in the billing department that she knew. She said that since it was later in the day in the mid-west but she would let me know if she heard anything.

At this point I decided to get our company benefits coordinator involved also. I wrote all of this up and sent her copies of my claim denial and radiology invoice. She talked to someone with the insurance company who asked her to send over my medical records. Hey, how about that, someone at the HEALTH insurance company agreeing to finally see my HEALTH records!

I called the supervisor of the department in radiology that gets procedures pre-approved. She had not heard anything from her billing department so was very happy to send over my medical records. And get me out of her hair.

I called the billing department of radiology and explained where we are on everything and was told that they would delay the date of my first payment by a month!

It took two weeks but I did get word from our benefits coordinator that the insurance company has agreed that it was a medically needed a procedure and that it will be covered! WooHoo. But they are waiting for an out of state adjuster to take a look at it before they send any payments out. What?!?! I am trying to be an optimist but it has been a week and everything still says that the claim is still rejected.

So, stay tuned. I might be making some more phone calls. I hope I get Carolyn again. I bet she remembers me this time.

This is just the most recent egregious example I have of my insurance wars. At least now I am feeling well and just have the one problem. Back when I was in treatment, I was receiving up to twenty bills a week. It was impossible to keep track of everything when I was so sick. I figure I paid over $1,000 more than I should have but I just didn't have the strength/energy/mental accumen to play these games.

Shame on insurance companies. To take advantage of people when they are at their lowest like that is just inexcusable.

Long Weekend Pictures - Winslow/Holbrook Area

We recently had a three day weekend and we headed over to Petrified Forest National Park for some exploring and hiking. We also visited Rock Art Ranch and took pictures of rock art. While we were in the area and had time we drove up to Little Painted Desert County Park which was beautiful. One night we stayed in the Mary Jane Colter designed La Posada Hotel in Winslow. It was a special treat and we were able to stay in the Hugh Hefner room. We spent the evening exploring the hotel and grounds after a wonderful dinner in the Turquoise Dining Room (two words - chocolate souffle!) All in all it was a great weekend get away trip. There are sure a lot of great places to visit in Arizona.

Maddie Was a Good Dog

Over the past two years I have been able to bare my soul on this blog about so many heart wrenching topics very near and dear to me. But there is one topic I just can’t seem to find the right words for. My beloved Golden Retriever Maddie died in my arms on January 16th. I have sat down with this computer many times to write an ode to my girl but can’t seem to get past the first couple of sentences. I am unable to do her justice and I can’t seem to express how much she meant to me and what a perfect companion she was. I’m glad I wrote an earlier blog about her which I think gives a portion of her essence. I still cry for her daily and miss her. Terribly. I’ll keep trying to write my ode to Maddie. She deserves it.

I had Maddie cremated and we buried her on April 10th at Angel’s Rest in Best Friends Animal Sanctuary in Kanab, Utah. She is surrounded by all sorts of other beloved animals and has a great view from her little spot. She has a nice marker with her picture on it that says she was a good dog. We had a nice little ceremony and my parents, Greg, Kindra, and Daisy were all there for her. We buried her with one of her favorite toys. Daisy and I stopped by to visit her not long ago. We left a ceramic lizard for her to chase and someone had put a “faithful companion” stone on her grave. They have hundreds of wind chimes throughout the area so it is a very calm peaceful place to visit.

Today at the Grand Canyon

One of my photos is on MSNBC.com this week!

I took this on our trip to Yellowstone last month. I have been voting on the "It's a Snap" travel photo contest on msnbc.com the past couple of years and have wanted to have a photo good enough to make it into the contest. As soon as I took this one, I knew I would enter it. I sent it in early last week and it was chosen and listed this Friday. Right now I am #9 of 27. Very fun! To see it on msnbc.com for the next few days click here.

Sometimes a bad back is just a bad back

I can say that the PET scan today was one of the most uncomfortable things I have ever done. First they gave me a shot that made me radioactive. The stuff came in a lead lined box in a lead lined syringe. After I got it I was put in a lead lined room by myself. They wouldn't even let Greg sit with me. "She is pretty radioactive right now, it would be better if you sat out front." Unlike the bone scan, for the PET scan I couldn't leave and come back. I sat there an hour reading and napping. The scan itself was in a long tube while laying on a thin board. They velcroed my arms to the side of my body and it took about 20 minutes. It was a long 20 minutes. My leg went to sleep, my arms were shaking from holding them under my body, I needed to cough, and of course the imagined itchy areas. Well, I didn't move and the scan went fine. We went and had lunch, did some shopping, and met with my oncologist for great news. My scan was clean and my blood tests came back perfectly normal. What a relief - Plan A it is! The doctor said my scan was the only clean scan he had all day so I think he enjoyed giving good news as much as I enjoyed hearing it. I started to cry before I even left the building. What a relief - the stress and worry of the past two weeks were gone in the space of a second. I don't plan on going back into the cancer center until 2011!!

What If

No one wants to talk about “what if”. I think I would like to talk “what if” with someone. It is certainly on my mind but I know those that love me don’t even want to think about it.

But I’m a planner, I prefer to think through different scenarios and have a game plan for each. Rains tomorrow, bring a rain coat and leave it in the car. Road construction in Salt Lake City, let’s drive through Park City and Provo Canyon. Home Depot doesn’t have the paint color I want, let’s mail order it. Power goes out, I have a flashlight next to my bed. Just the type of thoughts and plans everyone has every day.

Plan Bs.

My cancer comes back,…………….………. No Plan B. I’ve got nothing. I can’t even comprehend my reaction to hearing the news much less what I would do about it. I don’t have a Plan B because this time we would be playing for keeps. I’m not sure I would have had chemo the first time, knowing what I know now. But how could I let my family down and not have it in the future? I know everyone thinks they are being supportive saying – don’t worry it is not coming back. I know they worry too but don’t want to worry me. I say of course it is not coming back because I don’t want to worry them. So, no one talks about it.

But sometimes it is hard to be in my own head, if it does come back now I worry I will be letting everyone down. And if I do force the conversation and it does not come back then I am just a drama queen worrying everyone about nothing. Cancer sure plays with your head.

I have had some back pain for the past two months, I am having a PET scan this Friday. I’ll hear the results that afternoon. It has been a long week alone in my head.

I know it is not coming back ………. but what if?

Two Years Ago Today......

Today is my cancerversary. Hard to believe it has been two years since my diagnosis with stage 2 breast cancer. I remember that day like it was yesterday – the way time slowed down almost to a stop while my doctor said the words “it is cancer”, calling my parents (I still start to cry thinking about that call). It is a date I have looked forward to with a bit of trepidation. While I am certainly happy that I am a two year survivor, it is still hard for me to look back on my cancer experience and feel like celebrating. I do feel some pride for making it through it as best I could, but I also feel like I could have been so much stronger. I am ashamed of the time I was harsh with my Mom when she said I looked good bald and still feel a bit embarrassed about how much help I needed. I never could have survived without my parents and the support of my family and friends. I will never ever be able to pay everyone back for their kindness. I worry about that all the time. There is certainly a feeling of relief for being two years down the cancer survivor road. It is sure a bumpy road but two years is two years. My body has betrayed me and it has been hard for me so far to understand my “new normal” and trust my body again. I still have a lot of pain.
As today has gotten close I have been reading other blogs from survivors talking about their cancerversaries. I don’t seem to be the only one to have conflicting feelings about the day. I guess I am very happy to still be alive and I do think the time distance from the experience blunts some of the horror but boy I would give just about anything to have it never have happened.
Here are some thoughts from others on their cancerversaries:
“A cancerversary is more like a birthday than an anniversary in many ways. It is the day that your life as you knew it ends, and a new life begins. Because no matter what the outcome, life is never the same after a cancer diagnosis.”
“My hope is that it will forever be a day that marks triumph over fear and hope over despair. In the end, these are the characteristics that Karen -- and many thousands of survivors like her -- embodied as she stood up to cancer: courage, strength, hope. They are words used over and over to describe the qualities of those who battle cancer. I can tell you, they are words never over-used or under-appreciated for those who fight this disease.”
“I remember how my cancerversaries used to feel momentous, partly because my life took such a dramatic change on the day I was diagnosed, but also because of the relief that I made it another year. I'd always know when they were coming up.”
“Today I am acutely aware of that sense of survivor guilt which I have written of before. In a funny way, the “why me” questions I sometimes asked myself when first diagnosed with cancer, are now reversed. That “why me – why did I get cancer when others don’t” has been turned around to “why me – why do I get to survive when others don’t. “
“I will always be able to look in the eyes of another survivor and without saying a word, be able to read the shared pain and fear we share. Today, I am a one year survivor. Today I feel hope mixed with an anxious future of what the Lord holds in his plan for me. Today, I am so thankful for those who carried me through and the blessings I have each day. Today, I am grateful for another year of life.”
“Some friends have asked me if I am celebrating this milestone today and the answer is I am celebrating by doing the ordinary things – a walk, a coffee later with a friend, cooking dinner for my husband…for it was the ordinary things I longed to be able to do again when I was ill. It took cancer to teach me the beauty of such ordinary things.”

Vacation Pictures - Yellowstone and Grand Tetons