I totally rock!

I survived the port installation!  Once again it wasn't as bad as I imagined.  I think the biggest reason for that is that everyone was so nice and they let me do it my way.  I was more worried about being sedated than I was about the surgery.  I have this weird phobia about that and I think it should be for major surgery.  Doctors intend for you not to feel pain and suffer but that can mean a lot to different people.  They have your best interest at heart which is why it's so cool that the nurse let me decide not to take the Fentanyl and Versed.  Anne, the RN that was going to keep me comfortable, instead held the needles like Edward Scissorhands and made eye contact with me the whole time.  This was awesome because my head was under a tent and Steve and Melissa (Doc and Nurse) implanted the HUGE thing in my chest and made the cuts in my neck and upper breast area to put in the POWER PORT.  I love the sound of that.  It sounds like I have a video game in me or at the very least you can plug into it and do some fabulous things.  This is going to totally save me from needles in my arms all the time which if you know me well you know I HATE!!  I know everyone hates that but I'm phobic about it so the yoga breathing and visualization is really really helping me out with this whole cancer thing so far.

Another cool thing about today was that my nurse was Debby and had been at St. Marks for 18 years.  That made me feel better too and she was super smart and nice and experienced.  She put in the iv in my wrist where they took a couple of pre-op vials of blood to make sure I clot okay.  I guess it must have been fine because I got the surgery and didn't bleed profusely.  It all worked out.

Now for the best part of all......  after leaving the hospital around 12:30, I got to leave soon because I wasn't sedated, my mom "my driver" met my friend Sherry at the Olive Garden for lunch.  It was great to visit and eat because once again I keep having these procedures that require you not to eat or drink for 24 hours or 12 hours or starting at midnight, whatever!  No wonder I'm losing weight.  It's not from worrying, it's from not eating and drinking all the time.  Sherry gave me a beautiful pink Carribean scented candle and a card that makes me smile.  She is such a great longtime friend and I smile thinking that she called me her "light".  :-)

Anyway, back to the rest of the story of today......  We drove home and I was greeted with so many beautiful things from everywhere.  The doorbell rang and I got flowers from Debbie and Joe.  OMG!  They were absolutely amazing.  I can not believe how gorgeous they are.  And, then it rang again.  I got a beautiful, amazing, wonderful, bright Coach backpack/purse and matching wallet and sunglasses from Cindy and Kevin.  Cindy knows me so well and once again picked out the most phenomenal thing to totally brighten my day!  I also got two cd's from Marita to help relax me and the best part of that was her funny sticky notes..."out out damn spot".  That reminds me of my wonderful gramma.  And, there was a beautiful, thoughtful gift from Walt and Janet who stopped by.  I totally love it (bracelet and matching earrings with a meaning).  I got a loving card from Peg.

It has been so nice to have the amount of support that I have gotten from everyone.  It has been absolutely great to have visitors, love, prayers and good thoughts coming my way in bulk.  I truly want everyone to know how much this has meant to me.  Thank you so much!  Today, in my heart, I am truly grateful.  More grateful than I have ever felt.  And.........I did it!  I conquered the POWER PORT!! What next?

This is me with my bandages :-)  YAY ME! 

I got a Power Port!  I go back Friday to check it and 6/8 to take out the stitches.

Another appointment

Today I had my first pity party.  I called the oncologists office and left a message about when I was supposed to get my "port" installed.  The port is the thing that they put the chemo into, take blood out of, give fluids, put in antibiotics etc.  It means that you don't need to have needles put into the veins in your arms every time you have treatment.

Anyway, they called me back and decided I get to go in and have this done tomorrow morning at 9 am.  Apparently it's a big thing because you need a "driver" for afterwards and that's why I am upset.  First of all, I was planning on working a full day tomorrow.  I wasn't expecting to "need a driver" or be on some local or general anesthesia.  So, I was upset!  It's probably not a big thing but to me it is.  I like to plan and schedule and they dropped it on me.  Then they (the scheduling people) ask a bunch of questions I feel they should already know the answers to and they can't tell you anything important.  FRUSTRATING!  Not to mention it is kind of messing up my work day tomorrow and lunch with my friend that I was planning on.   The worst of all is that now it feels so real.

I hope it doesn't hurt too much and that they do it right the first time.  Wish me luck!

Memorial Day Weekend

Wednesday, Thursday, Friday, Saturday and Sunday have flown by this week.  Today, I'm just chillaxing with Amber.  Did a little flow yoga (Sunday church with Jamie) at Shiva Center this morning, ate and shopped at Whole Foods, came home took a nap.  Ahhh.... the perfect day so far.  I'm glad it's a 3 day weekend.

Wednesday, Willie and I went to a "chemo class".  It was 3 hours long.  The nurse talked about eating right, drinking lots of water, and taking care of yourself.  The rest of it was pretty much what you'd expect.  There were two other people in the class each going through their own private hell with cancer.  I couldn't quit thinking about Ileen who had ovarian cancer.  She is 69 and had a 13 pound tumor removed a couple of months ago.  She had ovarian cancer when she was 37 and has lived 32 years cancer-free.  She was having a lot of remorse over not removing the other ovary way back when.  She cried a lot, already had started taking the anxiety meds and still hadn't decided IF she was going to do chemo (even though 3 doctors told her she needed it).  The other gal had lung cancer and a broken arm that she got at work lifting a box and her arm just broke because of the weakened bones from the tumor.  That sounded just horrible.  She had already gotten in her "port" which is the little channel that they will administer the chemo medicine into.  They both were having the same type of therapy where they go for 4 - 5 hours and then every 21 days for 6 treatments.  My treatment is different drugs than theirs and the nurse thought I might not even lose all my hair because I have so much of it.  Although, she said for a lot of people that it's pretty traumatic and emotional when your long hair falls out.  I'm not that worried about it either way.  I'll just have to wait and see.  I don't know when I get my "port" put in.  I need to ask about that.

Thursday morning started out with a CT scan.  I got to drink a couple of bottles of berry flavored barium. Then, I got to slide in and out of a medium sized donut this time for some more cool pictures of my insides.  That was to get clearer photos of tumor size and location.  In the afternoon, I met Willie at St. Mark's and we met with Dr. Murday, the surgeon.  I really enjoyed meeting with her.  She seemed competent, confident, and was very informative.  She encouraged me, told me I would be okay, and that she is the back up plan only.  This kind of cancer is treated quite effectively with chemo and radiation.  I didn't know that it's the radiation that shrinks the tumor and the chemo just helps to make that easier for the radiation.  She measured the tumor, confirmed there is just only one, took lots of notes, and sent me on my way with a hug.  Willie and I both got a yummy chocolate before setting my next appointment with her on August 21.

In between these doctor meetings, I've been working.  Friday was no different.  I went into work early for a meeting at the East Broadway branch with my renovation specialist, Lisa.  Then, worked on all the applications as I usually do.

The highlight of week is that my friend Tera came down from Bellingham for a visit.  She brought some goodies for me.  We were able to spend some quality time hanging out, organizing, and wig shopping.  Amber came down from Bear Lake for a much needed visit too.  And, even Christi and Olivia stayed over for a couple nights.  It was nice to see everyone.  I enjoyed it a lot and got lots of much needed hugs.  

Amber cut her hair on Thursday and donated it to "Locks of Love".  Isn't that sweet?  Now both of my kids have donated their hair to a good cause.  Sam did it in 2009 (on his birthday in Boston) after growing it out for 2 years after leaving the Navy.

And the final photo..... of me trying on wigs just in case..........  

NOPE!  :-)

Too Courtney Cox, but maybe in a different color.

I like it.  

First meeting with the Oncologist

The stage is IIIA: (t1-3, N1, MO) The PET scan was clear and the cancer has not spread to any other of my organs.  It has however spread into 1 lymph node.  I'm not sure if it's in my groin or which specific lymph node it is in.  I think I understood it is a nearby lymph node (diameter 1.6 cm).  But, because of this, it makes it stage IIIA.

I have a really busy cancer schedule for the next couple of weeks.  Tomorrow Willie and I get to go to a chemo class at 3PM.  Then on Thurs. I have a CT scan at 9:45 and an appointment with a surgeon at St. Marks at 3PM.  On May 31 at 11 am I meet with the radiologist and then on June 4 at 10:30 am, I begin 6 weeks of radiation and chemotherapy. The chemo/radiation is standard for my cancer and the treatment is the same for stage 1, 2 or 3.  Surgery is  no longer the standard option for most people with anal cancer.  In people who do need surgery, the type of operation depends on the type and location of the tumor.  The drug(s) used for chemo are:  Fluorouacil and Mitomycin.  I will go in on Monday the 4th and sit in the comfy chairs for a couple of hours pumping in toxins to kill the cancer.  Then I leave with a bag/pack that dispenses chemo in me the rest of the week that I carry around.  I go back on Friday for that to come out.  Then wait 3 weeks and do that again.  Basically 2 rounds of the drug and 6 weeks of daily radiation (which is painless and only takes 10 - 15 minutes).  I will have a "port" put in next week for the chemo to go in.

Fun chemo side effects include the more common:  Decreased white blood cell count with increased risk of infection (this can occur several weeks after the medication is given - 2 to 3 weeks is common), decreased platelet count with increased risk of bleeding, diarrhea, nausea, vomiting, loss of appetite, fatigue, hair loss, headache, weakness, muscle aches, increased tearing an irritation of the eyes, dry flaky skin.   I know, sounds wonderful!  :-)  I can't wait.

More importantly, I am going to reach out and attack this and kill it out of my body with these nasty drugs.   I feel like it's not a movie anymore, it's become a war.  Now that I know the plan of attack, I feel more powerful.  Not knowing was the worst.  I hope that is the worst.  I think it will be the worst.  Anything else I can handle.

Tonight, when I got done around 4:15 with scheduling talking to the dr. and scheduling all my appointments, I spent the next 4 hours on the phone calling as many people as I could and explaining.  I didn't feel like blogging was the way to go today.  I still have more calls to make, but for now, I'm okay posting this information just to log it in.  I can't tell you how much it has meant to me hearing from everyone the love, support, prayers, gifts, passion, and tears.  It is amazing what wonderful people I have in my life.  I'm grateful for each and every one of you.

Tomorrow I will be working as usual.  Then off to chemo class at 3PM with Willie.

I'm the Star

It occurred to me today that since last Wednesday's revelation I have almost felt like I was in a dream.  Then I realized that it was actually a movie, a horror movie.  I'm the star in my own horror movie and the monster is "cancer" (and the director and producer too).  In my movie, I don't know the ending or what is going to happen next.  The monster is lurking out there and it's going to be a surprise when he jumps out.  I just hope that the ending is a good one.  I feel bad that all the "actors" in my movie are my friends, family, co-workers and doctors and that they are all in the same boat with me.  They are acting their part in supporting roles, each of which are so very important.  When I read books, I always skip to the last 2 or 3 pages so I can see what happens in the end.  That's what's bad about movies.  You can't do that.  You just have to wait.  I realized that today was one of the first days of waiting of many more to come.  It starts out gently at first......

My PET/CT scan this morning was not too bad.  I think as far as scans, like MRI, or CT, this one was kind of cool.  Basically, they prick your finger for sugar in the blood (like for diabetes - my friend Paul Bird has one of these little units that we played with once).  Then, you just get an iv put in your arm.  After that, they send you go off into a private room to sit in a comfy recliner listening to Yanni on the boom box and drink a lemony drink for an hour.  Oh ya, I almost forgot.  That happens after the radiologist shoots you up with a nuclear cocktail that makes your insides look purdy for the camera.  It wasn't a normal shot.  It was in a space age metal thing about the size of a small carry on size hair spray in a metal radiation proof container.  I'm not supposed to go around small children or pregnant women for a day or two if I can help it.

After an hour of relaxation and letting the stuff take hold of your insides, you undress into everyone's favorite backless gown and go lie down on a long table with your knees propped up on a foam triangle.  The radiologist covers you up with those yummy warm towels they have in hospitals, you listen to Beach Boys (or whatever you want to, I chose Beach Boys. Next time, I'll be smarter and bring my own music and a magazine - note to self).  Then you slide in and out of what resembles a giant white donut for 30 minutes, and all the while you are not supposed to move.  Boy do you want to itch when they tell you not to move, or sneeze, or cough, or wiggle your toes....  

The radiologist was super nice.  Her name was Penny.  She is very experienced.  I'm sure we're going to be great friends.  I wanted to ask her to take a photo of me going into the giant donut but I just don't know if that is PC (politically correct) yet in this stage of our relationship so I didn't.  I'm sure Penny and I are going to be great friends soon.

Tomorrow is the BIG day, the first of many.  Today's scene in my movie was just the preview.  I meet with Dr. Gregg at 1:30 so she can tell me what's next.  So far, the worst part is the wait.   You just never know when the monster is going to jump out.  But, the one thing I know is that usually the hero wins in the movies I watch and defeats the monster; even the monsters that keep on getting up.  Since,  I'm the hero and the star of my movie, I think that's what's going to happen.  We'll all have to wait and see what happens next.

Sitting in my comfy chair with warm blankies relaxing

My cute pink bandage and lemony drink to show my insides

Yumm!  See, I can do it.  Much tastier than the Movi Prep (for colonoscopy)

Lucky me

I've always thought that I was lucky.  I often say to people that "it's better to be lucky than good".  Well, I'm lucky.  And, luckily, I'm pretty good too so that helps.

In the few days since I heard that I have cancer, it has been a blur of letting the ones closest to me know about it, working, googling, listening, and learning.  Wednesday, when I was still in shock, I called as many people close to me as my phone battery would allow to tell them the news.  I wanted everyone to know what I now knew.  Thursday, I went into work, told all my co-workers and called a few more people.  Friday, work again, then left a bit early and drove over to Huntsman Cancer Institute to check it out.  What a phenomenal place!  Wow!  In my brief visit there I got some good information and a good visual of what it would be like to get treatment there.  Then, it was off to InterMountain Cancer Center.  It was close to 5, so they seemed to be shutting down.  That wasn't as productive.  I'll probably stick with Huntsman...... we'll see.   I'll have more news on Monday after my PET/CT scan.

I have been dazzled by the love and support coming from all directions.  It warms my heart and gives me the strength I know I'm going to need to fight this.  Right now, I feel positive and optimistic.  That's just me.  I am so lucky.  I am lucky to have a phenomenal husband who I know will be there for me every step of the way.  Lucky to have great friends and family to support me through this "blip".   I'm lucky to be in SLC, UT where we have the most premier cancer care in the nation.  I'm also lucky that Willie had to get a colonoscopy because if he didn't, I probably wouldn't have booked my appointment.  I mean, heck, I'm not even 50.  Yet!  Thank goodness he made me do it when we were there that day.  Lord knows I tried to cancel that appointment twice.  So, I am very lucky they found my cancer...... instead of who knows when down the road when it might be too late.   And, because I'm lucky, maybe it's in an early stage.  I hate waiting to find out what happens next.

Last night I woke up at 3am and googled "PET/CT scan".  I was driving around yesterday when I got my instructions on preparing for it Monday at 8:30 am.  Apparently, they don't have any email instructions they can send, so I just had to remember them.  I feel more comfortable if things are written down.  Starting tomorrow morning here's the rules I must follow to prepare for it:  no caffeine, no cholesterol, no sugar, no fruit, no soda, no strenuous exercise (which also includes lifting grocery bags.  Since when is lifting grocery bags strenuous?).  That is a lot of "no's" for me to hear.  So what can I eat?  Apparently protein and broccoli.  Whatever!  At least I can eat and not drink that nasty stuff you have to drink with a colonoscopy prep.  Ewww!  

So I googled.  I found a pretty good site that explained the process to me.  I'm not sure if I'll be actually talking to the cancer doctor on Monday or if this full body xray thingy is just the first step in my impending series of appointments to explore the treatment of my cancer.  Here's some information from:  http://www.petscaninfo.com/zportal/portals/pat/petct_basics

"Positron emission tomography (PET) and computerized tomography (CT) are both state-of-the-art imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations. The highly sensitive PET scan images the biology of disorders at the molecular level, while the CT scan provides a detailed picture of the body's internal anatomy. The PET/CT scan combines the strengths of these two well-established imaging modalities into a single scan.

A CT scan is able to detect and localize changes in the body structure or anatomy, such as the size, shape and exact location of an abnormal growth, a sizeable tumor or a musculoskeletal injury.

A PET scan is very different from an ultrasound, X-ray, MRI, or CT scan. A PET scan allows the physician to distinguish between living and dead tissue or between benign and malignant disorders. Since a PET scan images the biology of disorders at the molecular level, it can help the physician detect abnormalities in cellular activity at a very early stage, generally before anatomic changes are visible.

Alone, each imaging test has particular benefits and limitations but by combining these two state-of the-art technologies, physicians can more accurately diagnose, localize and monitor cancer, as well as heart disease and certain brain disorders."

Sounds like they will inject the stuff into me, then I lay still for an 45 minutes to an hour, then the scanning begins for an hour.  The proper medical language is that the PET technologist administers the radiostope.  I guess I better get used to the terms.  I'm starting with one a day. I have a gigantic learning curve. 

I spent the morning reading Mary Nichols entire blog.  She's a local morning and noon news anchor on CBS affliate, channel 2 news.  I watch channel 2 news every morning and love the people, Ron Bird, Mary Nichols, Debbie Worthen and Casey.  They are a funny, informative and awesome way to start my mornings.  Anyway, I didn't even know that Mary had cancer.  I must have missed the days they did her mammagram etc.  I thought it was kind of weird that one day her hair was longer than the day before.  I thought to myself, "hair extensions".  But no.  It was cancer.  The way I found out was there was a realtor event on April 6th which is called "Bras for a Cause".  It's a fundraiser for Women's Council of Realtors" each year.  They talk a bunch of cute realtor and mortgage guys into a wearing and modeling funky bras and everyone bids on them to raise money for breast cancer.  Some of the bras go for over $3000!  Mary was the guest speaker.  I was so impressed with her story.  What an inspirational woman.  She was amazing.  Anyway, I read her whole blog and it brought tears to my eyes.  I am a little fearful from her posts over the chemo treatment but I am grateful to read what others have gone though.


As I said at the beginning, I am lucky.  Lucky to live in this age when there is so much information online.  Thank you to Mary for her blog and positive insight into her breast cancer treatment.  Lucky for the prayers and love of so many wonderful people.  I can't believe how lucky I am!  Thank you.

Day 1 - May 16, 2012 - My new perspective

I don't really remember hearing the words because I already knew what he was going to tell me.

I have cancer.  

I knew it the day before when I called the PA back to schedule time on Wednesday, May 16th at 2PM to meet with Dr. Cutler.  Willie (my husband) and Adam (my son-in-law) had both had their first routine colonoscopy in March and neither one of them had to go in and meet with the gastroenterologist.  They just got an all clear letter and call that your polyp(s) are okay.  I on the other time didn't have any polyps at all.  Lucky me.  I just had some unusual masses.  I wasn't too worried about it because I'm so healthy.  Then the phone call..... or 6 phone calls that I didn't pick up because I didn't recognize the phone number.

So, the last words I remember hearing through the background noise of my loud beating heart, was me confirming that the next step is to set up an initial consult with an oncologist who would "stage" the cancer.  Wow!  The first of my new learning curve on cancer and my future of trying to understand medical lingo..... STAGE.  Baby steps for me......  

I sat in the sterile office waiting for longer than it took him to tell me the results of the biopsy, give me a stack of papers on cancer, and tell me he's sorry.  2:38 PM on Wednesday, May 16, 2012 I learned that I have cancer.  On the drive home I called the oncologist, Dr. Xylina Gregg at Utah Cancer Specialists to set up my consultation.  

At 3:15 PM I walked in the door of my house to see my husband sitting in the chair in the living room waiting for me.  He knew it too.  "I have cancer", I said.............  And, that's how it all started.  Let the games begin!

While I waited......