Tuesday, December 29, 2009

Bubbles, bubbles and more bubbles....

Connected through two friends from two completely different areas of my life, I made a new friend yesterday. She also has breast cancer and receives her care from Kaiser. Our stories are very similar and our mentality towards our fight is the same.

Yesterday, on her blog, she posted the following affirmation:
"Focus on what is working in your life, the positive stuff, because that which you focus on and think about the most is actually what manifests in your life."~Dr. Christiane Northrop
When I came down with a fever last night and talked to the nurse in Dr. Sweet's office this morning, I was not feeling so positive. She informed me that my white counts from the blood test that I had this past Saturday were low - 1.5 - by chemo they should be closer to four. The nurse said that I more than likely had a fever because of this low count. This, and the low-grade nature of my fever were pretty strong indicators. The nurse recommended that I stay home, limit visitors and wear a mask to protect myself.

Frustrated by my sickness and not being able to return to work today as originally planned, my post on Facebook this morning damned my white blood cells. I should not have done that. All in all, I am handling chemo well. I am strong. I came through the Holidays OK. White counts naturally take time to build back up. The fact that I got a fever...well, that basically means I am not Super Woman. Not today, anyway.

In response to my Facebook post, my new friend responded that I should visualize my white blood cells growing. My friend Carrie gave me the visual of bubbles in a bath tub, multiplying and bubbling over as the water runs. I like this visual.

Dr. Sweet just called. He confirmed what the nurse said and discouraged me from my weekend travel plans for the weekend of January 15 - four days post my January 11 scheduled chemo date. However, he says I am doing just fine and he does not anticipate my symptoms worsening much more through the course of the next four treatments. He just does not want me too far from home and a cruise ship to Mexico is not ideal in his viewpoint...too big of a risk. I can respect that.

I won't say that I am trying to focus on the positive...because as Master Yoda says (one of my favorite quotes of all time), "Try not...do or do not...there is no try." I AM focusing on the positive, heeding Dr. Northrop's advice. Right now, my tub bubbles over.

Sunday, December 27, 2009

Something fun...by Wordle

My blog summarized in random words. Click here!

Friday, December 25, 2009

Tears Came Easily Today....

Christmas Eve was finally upon us. Still recovering from side affects of my chemo from this past Monday, I knew the holiday would be a difficult one for me and my family. I did not want to think about it too much or complain. I anticipated the emotion but hoped to avoid it.

The first time I cried was during Christmas Mass. I shed a tear as I proudly watched my children kneeling in prayer, praying to God for my health, their daddy, their friends, Santa or whatever brought them comfort at that moment.

When we returned home, exhausted beyond recognition, I cried uncontrollably because of what I would be unable to accomplish that evening. I was able to track Santa with Maddie through Norad for a few minutes. However, the traditional rituals of putting out the cookies and partaking in the magic that is Christmas Eve with young kids was just not for me this year. As I relunctantly headed to bed at 8:30 (before the kids), I sobbed to Steve that I did not want to be sick anymore. I am sure it broke his heart. I feel badly for that...he even had to stuff his own stocking!

I cried this morning. At the time, I just felt ugly. I wanted my hair. I wanted to feel better. I wanted to enjoy Christmas. Reflecting back, I think the emotion resulted from residual exhaustion from the previous day. Going to my parents house was the best medicine. My family's patience was astounding. I do not think I had much "light in my eyes", as my dad put it, until fairly late in the day. A good talk with Kelly (my awesome sister-in-law), a nap and a brisk walk with Steve right before the Chargers' game brought focus. The Chargers started winning and I found peace in the day.

I cried with my mom in the kitchen sometime in the middle of it all. This time, it was not because I was sad. I just felt the need to give her a hug, tell her that I love her and thank her for such a wonderful Christmas. She is brave. She tries not to cry. I know that. She needed acknowledgement and that is the least I could do for her.

Despite the tears of the day, I think I ended in a good emotional spot. Christmas is magic. Maybe it is because I had all of these emotions on Christmas, that I was able to work through them. Maybe I am done for awhile. Maybe not. But as I end the day with Harrison sitting next to me and Maddie on Steve's lap watching SNL's replay of "Schweddy Balls", all is right with my world. Merry Christmas, all.

Tuesday, December 22, 2009

Chemo 12/21/09....Session 2 Complete!

Chemo number 2 - check!

It went as well as can be expected, yesterday. My mom picked me up for my 9:00 session. Steve joined me after the kids were picked up by our friends (off to Seaworld they went - thanks, Charleen and Burt!). My nurse, Anthony, was awesome. He is from New York, and we just generally liked the guy. (I think the thing I liked most is that he told me I could go to the movie theater, wearing a mask of course.)

My white blood count was 3.9 - the norm is 4-11. However, they use a formula to assess if I am healthy enough for chemo, which obviously I was. I am still trying to figure all of these counts out. Those I have met in my support group understand them all. Maybe by my last session, I will have it down. What I did ask is whether or not the hustle and bustle of my every day life could affect my white blood count. Anthony answered that it would be more apt to directly affect my red blood count. However, he inferred that I need my rest in order to help fight any ailments that may be looming.

Unlike the last chemo session, the infusion of all three drugs in my chemo "nectar" took about 3:30. I was proud that I actually got some work done on the Allen Foundation grant during my stint. It was just a few paragraphs - such is my pace these days, but working was a nice distraction. (Not quite sure whose wireless service that I was using, but it was one of 10 on the list given by my computer that had no security linked with it!) Once I was "discharged" (I am technically an inpatient during chemo), since it was lunch time, Steve and I decided to head to D.Z. Akins for some soup. I could not resist getting their Chicken Noodle Soup, otherwise titled "Jewish Penicillin".

By the time we got home, I was ready for a nap...and some more nausea meds. My tastebuds started to dwindle again and my sense of smell was hightened, which adds to nausea at times. Steve and I took Cooper for a short walk in the late afternoon. The fresh air felt wonderful and the slow movement equally so. My friends, Lisa and Amy, brought food to our house for dinner last night. Both dishes were equally yummy. (I had to sample both!)

The long and the short of it is, I am fighting the nausea best that I can. I still need all three drugs as prescribed, same as last go around. I am exhausted, but with Christmas just around the corner, I will manage. The look in my kids faces on Christmas morning is way more important than anything else than how I feel this week.

And on another positive note, as previously mentioned, we had several friends over helping us move into our new master bedroom this weekend. Tom paved the way, of course, but also included were my mom and dad, Steve's colleauges, Julie, Casey, Joan and Paul (who stopped by some wonderful beef stew), my colleagues, Lisa and Gyl (Lisa, thank you for the trip to the Goodwill and the drinks for us all to share!) and our friends Lisa, Kyle and Doug.

Doug had watched our kids for us as I was preparing for my first chemo. This weekend he told me a story that catches the essence of my fight. He said that Harrison leaned in real close and real serious to him and said to Doug, "My dad told you that my mom is a breast cancer survivor, right?" A child's insight that has never been more true.

Sunday, December 20, 2009

My Wig is Fitted and a Red Head is Born

Yesterday, Steve, the kids and I went to my wig fitting. The kids did well. They did not get too bored and Maddie even found a hat or two that she thought were just perfect for her. I wore my wig home where we met up with Tom, my mom and dad.
Several minutes later, a group of friends came over to help us start moving into our new master bedroom and help clean Harrison's bedroom. The master bedroom is truly beautiful, I cannot believe it is our room! A special thanks to you all for taking over organizing my closet and new dresser and to Lisa for taking on Harrison's room. After a short nap, my wig and I made our debut at Jim and Barb's Annual Christmas Cocktail. We had a great time - thanks to Barb and Angel for making sure our kids were taken care of so we could enjoy the evening.

By all accounts, the wig passed muster. Needless to say, hats are far more comfortable - so we will see how it goes. Although I have to admit, I already picked out a platinum blonde wig for my next purchase. Maybe each look will come with its own alter ego. As my friend Glen suggested, maybe I need an alias. I wonder which will show up for chemo in the morning?

Saturday, December 19, 2009

I feel pretty again...

I read my own blog entry, Not to Complain, nearly every day since I wrote it. At first, it was because I was amazed by comments exclaiming that it was "my entry best ever", "stunningly written" and the encouragement from several that I should write a book. However, as the week wore on and the evidence of my hair loss grew, I read my blog to remind myself "not to complain - the chemo is working".

I have been an emotional time bomb this week, I suppose. I kept reminding myself that it is just hair. No matter how I justified it, I continued to have a hard time fighting back an overwhelming sense of loss. For the first time of my cancer battle, I was really depressed and also felt a little silly for being depressed. Was it really just hair, or was it something else?

My friends have been amazing this week. I was fortunate to spend time or at least talk to one or more of my crazy Green Elementary PTA friends every day. They have a way of brightening my spirits all of their own. My colleague Lisa Reddy and I had lunch twice - she has been a great source of support as are the rest of my Foundation family who "checks-in" on me constantly while I am at work. I even received one of the most beautiful orchids that I have ever seen from new friends at the Gary and Mary West Foundation. I am truly, truly lucky.

Despite outside support, I became more and more depressed as Friday drew near. My hair loss was driving me a little insane. Enough with the piles of hair that look like small creatures! I was at the Harrison's Holiday Sing on Wednesday night and as people walked in the row behind me, I worried about them inadvertently bumping the clip that held my hair (which they did), knocking the clip out and all the hair coming with it. It has been a weird week like that.

My friend Ally has been on call to cut my hair. With my wig fitting on Saturday (today), I really wanted to wait to Friday and I did just that. Ally came over with her boys and we ate pizza and cake. I drank a little wine and then we commenced with the inevitable. At first, Ally helped Maddie and Harrison cut my hair and then cut it really short with a few long pieces to cover obvious bald spots (we all thought this would work). All was good. Ally went home.

However, at 10:30, I sent her an emergent text. My hair was shedding more with every touch and by that time, I knew I would never wear it any way but with a hat. What is the point in that? Gracious and beautiful Ally ran right over for my buzz cut. The kids were asleep. We laughed and joked about G.I. Jane while she was buzzing my hair. The whole thing took less than 15 minutes, if that.

I showered, put on my favorite "pretty" nightgown, picked out a cap to sleep in and headed to bed. It was not the most comfortable thing to sleep with a buzzed head. I figure many men do it all of the time - so I will probably get used to it. Mom is getting my a silky pillowcase to sleep on - that will help.

My head itself, is not the prettiest, with its dark stubble revealing areas of my head where I have truly gone "bald" from the chemo. However, I love the pictures Steve took while Ally was cutting my hair. There is a relaxed look on my face that I have not recognized all week. And I love my hats. I do not even mind (so much) that I have no bangs or ponytail poking out of them. I feel pretty again. And I have not even dawned the wig yet.

Maddie is now awake and helping me finish this blog entry. She says that I look pretty in my hat this morning, but that my hair looks like a boy's haircut. An honest evaluation straight from the mouth of one of the prettiest little girls that you will ever meet. I am reminded again how lucky I am - to have children and a husband who love me so much....and with that, I feel even prettier.

Wednesday, December 16, 2009

Not to complain...

Not to complain, but my hair is falling out in a way that I never imagined. (Not that I ever spent any time imagining this travesty.) It is coming out in fistfuls.

At the advice of my support group (I attended my second session last night at Scripps Polster Breast Care Center), I put on a beanie hat before bed so I would not wake up to hair all over my sheets. I tried to put most of my hair into the hat so straggling hair would not rub my neck. I should have never looked in the mirror. In dim bathroom light, the mirror revealed dark circles under my eyes. The emotions of the day had been many, but mostly I knew was just over tired. Even still, with the beanie and the dark circles, the mirror revealed a cancer patient. It brought tears to my eyes and I felt the same emotions that I anticipate having when my hair is gone for the first time. Steve reassured me (as he is all too good at) and made me chuckle by reminding me of my brother's love of wearing beanies and how now Darin and I will look more alike, both wearing beanie caps. About five minutes later, Darin texted to tell me how awesome I am as a sister. What timing.

To continue on with my story, too warm in the wee hours of the morning, I took the hat off. Much to my surprise, when I awoke this morning, there was very little hair on my sheets and in the hat. However, as soon as my hands touched my hair, they just as easily could have been scissors cutting the under layers of my locks and I soon had a pile of hair that could have been mistaken for a small furry creature. I thought it was awfully ironic how soft and shiny my hair appeared lying in the pile on the bed. It had been so dry for the last 10 days or so - now it was shiny and baby fine. Whose hair is this anyway?

During the support group, Bev had asked me how I felt about cutting my hair. Despite the residual emotions from last night, I still feel the same as I described to the group. When Steve and the kids (along with the help of my friend Ally) cut my hair on Friday night, it will be an event, a celebration of my chemotherapy working. It is a necessary milestone in my journey - in my family's journey.

I know that my emotions will continue to run high this week, as I to manage best I can the dwindling amount of hair available for styling each morning and the "let's see how much hair is going to fall out when I take my clip out now" moments. However, thinking of it as a milestone, I know I am lucky to have this chance to beat this disease. As I felt my tumor this morning (sorry if this is TMI), it actually feels a little smaller. And that is definitely nothing to complain about.

Monday, December 14, 2009

My Lovebug Cooper, My College Roommates and Pal Joey's

This morning, I looked down at our carpet and decided to vacuum. For those of you who do not know Cooper, he is our two-year-old, 80-lb golden retriever, a lovebug who enjoys evenings and rainy days in the house. As the weather dictated this weekend, he has been in the house a lot! Cooper leaves behind a mountain of dog hair. Out of the four of us who live here, I think I am the only one that it really bothers - but now that I have a Dyson Pet Vacuum, I have a solution.

As I was vacuuming, it occurred to me that the hair on the floor may not just be Cooper's. My hair started to shed last Thursday, in line with the warnings I had received that I would start losing hair at the 10 day mark.

My original wig fitting appointment was this past Saturday. Even though I had started to lose hair on Thursday, I canceled it. I wanted, or really needed, one last weekend with my own hair. My friend Jeanie Spies, RN, PNP came to see me on Thursday. Jeanie has been a trusted advisor of mine since my diagnosis as she manages the Integrative Medicine Program in the Peckham Center for Blood Disorders at Rady Children's. Anyway, when I told Jeanie about my hair, she reminded me that there is a mourning process to losing your hair. Thanks, Jeanie - I am glad I took the extra weekend to enjoy it.

In the interim, I had a very, very special visitors this weekend from the Bay Area, Jennie, Shelley, and Carrie (and April and Lynn in spirit). My Sonoma State roommates, we went through it all together. They know my secrets and have seen me at my best and my worst. They were at my beck and call all weekend - we even spent all day Saturday purging Madison's bedroom. Whew! On Saturday night, thanks to Steve's family, I took the girls to see the Ten Tenors, where we met the Ten Tenors after the show and had fun poking at them a little. (Carrie was telling each of them that they were her favorite--granted they were sitting right next to one another!)

To keep this momentum going, I suggested a stop to a local dive bar, Pal Joey's, where I knew there would be a live band. I also knew that this probably was not the best place for me, but I needed the release. And I needed the release to be with my girls. We danced. I danced with a gentleman that reminded us all a bit of Mr. Rogers. Steve showed up for a dance and to take me home. We toasted to my next dance being in a wig. A perfect end to a perfect night.

So now, at day 14 my hair is falling out in droves. Dr. Hansen called to check on me this weekend and reminded me that hair loss is an indicator that chemo is working. I needed that reminder.

So what do I think about my hair? Well, at this moment, I am sitting on my couch typing in this blog hoping to find some peace with it. I also need to make some practical decisions too - like do I want to cut it now or do I want to leave trails of hair everywhere I go until Friday. Hmm....At least I know that Cooper won't mind.

P.S. The girls cleaning Maddie's room this weekend was huge, but should not overshadow Liz and Tom coming over on Thursday and putting up our tree, decorating the house and cleaning out our fridge/pantry/cupboards in the kitchen. Absolutely awesome. Thanks so much!!!! XXOO.

Tuesday, December 8, 2009

Never in My Adult Life Have I Ever Gone to Bed at 5:30...

I went back to work on Monday. I have to admit that on Sunday, I was exhausted. If I were wiser, I would have known that I was going to struggle on Monday. However, bound and determined not to waiver from the schedule I had set forth in my mind, I never even considered staying home on Monday.

My standard line of the day was (my returning to work) was "a nice break from my routine of going to the doctors and the couch". Really, my body was aching, I left the house with out my Vicodin (I felt fine when I left the house), with out my thermometer (anything over a 100.5-degree fever requires a trip to the doctor immediately) or any thought to my dry mouth and developing mouth sores. Yeah, I was really prepared. I muddled through, though. I talked to a lot of people I care about (which is really hard to do with a dry mouth); went to lunch with the girls; I got through my email; and set out my work plan for the week. All-in-all, a fairly successful day. It was good to be "seen", but by 4:00, I was exhausted.

The drive home was a nightmare. Torrential rain made hard to see and flooded the streets. I almost pulled over and waited the storm out - but I was just too tired and could not fathom getting home a minute later. I picked up Harrison and got home to admire the progress of my beautiful bedroom remodel. Tom and my dad had been working all day. My dad had gone home, but Tom, Steve and I watched the storm for a bit and then Steve and Tom went to the hardware store to buy paint and get dinner. I went to bed. I put on my pj's, took an Adavan and a Vicodin and handed the kids our home phone, instructing them that if anyone called, they should answer and tell them I was asleep. Of course, I was not asleep. I was freezing cold and just kind of lying there. It was 5:30.

Steve was great. When he and Tom returned, Steve helped Maddie serve me dinner in bed and checked on me regularly. Tom went home, having avoided the horrible traffic precluding him getting home at any reasonable hour. At 8:00, Steve, Harrison, Maddie and I watched "Santa Claus is Coming to Town" in our bed. At 9:00, I took a sleeping pill and succeeded at sleeping until Steve woke me at 6:15 this morning. The first good night's sleep I have had in a long while.

So I had "a day" on Monday but instinct told me that each day was bound to get easier. I am proud to say I was right. Today was much easier for me. I still suffer from the physical symptoms that started yesterday, but I have energy. As long as I have energy, I can handle just about anything.

My beautiful friend Shannon is struggling with some personal issues right now and has posted this quote on her Facebook page:

"Although I may not be able to prevent the worst from happening, I am responsible for my attitude toward the inevitable misfortunes that darken life. Bad things happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” ~Walter Anderson

This quote is incredible and is advice I take to heart, especially given my current state of health. This being said, I am grateful to have been able to work for the past two days. I pledge to revel in my next eight days of work, have chemo and then repeat. I am OK with that. And if I have several more nights of going to bed at 5:30, then I will be grateful that I am still working. The smile on Maddie's face, so proud of herself after serving me dinner, is worth the exhaustion in itself.

Friday, December 4, 2009

Funny Thing About Faith....

Yesterday, I started to ache. Not any real pain but an all around body ache similar to that of the flu. Since I have been walking every day, doing yoga here and there and even some light housekeeping, I was baffled. Yesterday afternoon, it finally occurred to me to take some Tylenol - I can only take Tylenol-based pain meds. When that did not work, I filled a prescription for Vicodin. Relief! However, as the day wore on, I came to the realization that these aches and pains are typical symptoms of chemotherapy. With that thought, I struggle again with the realities of this disease and my faith wains, even if ever so slightly.

It is the easiest thing to question: Faith - faith in religion; faith in my decisions; faith others place in me to make smart decisions; and faith in others to carry on projects to which I hold dear. I am learning that the connection between these varying forms of faith is immeasurably important to me. They are not mutually exclusive and on days like today, especially significant.

Every day when I wake up, for a moment, there is no cancer. I am just a wife, mom, a daughter, a sister, a colleague, a cousin and a friend. As the realization of the cancer dawns with the new day, my thoughts turn to, "what is the best decision that I can make for myself today." Whether it be not touching a trash can, sleeping an hour longer, getting the kids a ride to school or braving the work environment, I take each decision literally and contemplate the risks associated. I have faith in my decisions, both the large ones and those that are seemingly small.

I also consider myself lucky to be a medical professional, well read in random areas of my profession with colleagues abound. I was once told by a former colleague, that one of my greatest strengths lie in my ability to listen to all information given to me, detailed, random and not and effectively and clearly assimilate the most important information for presentation.

This unique perspective is serving me well. I easily rule out information that is not "productive" for me think about and discuss, leading me to another important area of faith, faith from others that I will make smart decisions. My physical limitations are becoming more obvious as I face the realities of being a cancer patient and learn what my super-human powers can't overcome. While my can-do spirit will always prevail, I am finding my energy is much better utilized believing I can do things as opposed to focusing on things that that I should not do. My white blood cell count is abysmal. That being said, I cannot hide under a rock either. Bottom line, please do not tell me that I can not or should not do something - I already know. I am just not giving it power.

As far as faith in others to complete projects that I hold dear - well, I had to get over myself for this one. I am a perfectionist in almost every aspect of my life. When I had to leave work last week for this past chemo treatment, I had to leave my colleagues with projects in a state that was far from comfortable for me. The projects were not finished - some barely started. I finally came to the realization that I had to have faith in my colleagues in their support of me as well as faith that my projects would be addressed effectively.

Since I have been home, I have been working to carry this concept into other areas of my life. For example, my cousin, Liz asked if she could help decorate my house for Christmas sometime next week. YES! And if Liz wants to hang the Christmas wreaths from the ceiling because that is what she thinks looks good, then so be it. I will love it just the same. Basically, I have come to the conclusion that in the short run, things may not always get done the way I would do them, but things will get done. And they will get done fabulously! (By the way, Liz has awesome taste - so I am sure the house will look great!)

As far as Faith in God - well, I appreciate my own spiritual beliefs as well as those of people around me. I will come to terms with my faith in my own way. It is coming along and its importance will shine.

So, as here I sit typing this blog, I watch my dog prance around the living room - he has faith that he is going to get a treat. I listen to my kids watching cartoons - I have faith that they will stay up way too late tonight. I watch my husband sleeping in his chair - he has faith in me. And as I sit here, I have faith in myself, knowing I did the best I could today. How could any ache or pain trump that?

Wednesday, December 2, 2009

Warriors in Pink, The Ultimate Booby Trap, Healing Touch and $253.40

Four precious gifts were given to me today. Four gifts of hope, joy and prayer. Four gifts of heart, thoughtfulness and determination. Four gifts that touched my heart and represent friends, family, colleagues and students helping me and my family the best way that they know how.

Steve brought home a gold-colored tin box tonight. Inside the box was a collection of $253.40 in coins and dollars of all different denominations. RDR's A-Team, a student-run organization that is overseen by teacher, Mrs. Janell Jones, has been collecting these monies since they heard of my diagnosis. I have been told that it is for something personal for me, but with all my family will endure over the course of the coming months, I am not sure that this is completely fair. I am touched and honored by this generous gift. My husband had tears in his eyes when he explained it to me. My daughter, Maddie, was careful to wash the money before she handed several pieces to me, germ-o-phobe that I am forced to be these days.

I also received an autographed book from a family friend of Kelly's parents, Bob and Dottie. The book is full of funny anecdotes and poems, all based upon the author, Jettie Kootman's experience with breast cancer. It is a cute book and I am touched that they sent it all the way from Phoenix. I look forward to reading it further.

LeAnn Eldridge, a fellow Green Elementary parent, sent information, a magnet and a neckerchief from Ford's Warriors in Pink Program. The symbolism of this campaign is phenomenal. I encourage you to check out the link: http://www.fordvehicles.com/warriorsinpink/.

Finally, my friend and colleague, Cheri Fidler, helped me through Healing Touch tonight. Something that I will never be able to explain to you all - it is something that must be experienced - and it is truly wonderful. It centers me, encourages my positive energy and strengthens my core.

So how am I doing? Well, how could I be doing any better? Love and encouragement seeps in at every angle. Whether it be from my own mother who has been at my side all week, to Tom watching over the re-model of our master bed and bathroom, to the numerous Facebook posts and text messages and messages on this blog. I am seriously stronger every day. A little nausea is inevitable it seems but nothing that I cannot handle. I walked today; I spent time with my kids; helped Harrison clean his room a bit; and had a nice evening with the family. My white cell shot did not even hurt today - I am getting better.

As stated in Warriors in Pink campaign, inside each woman is a believer, a survivor and a fighter. I am all of this and know I can be all this...thanks to you all.

Just a little sentiment through video...

Recovering from chemo has given me a chance to catch up on one of my favorite TV shows, "So You Think You Can Dance". In doing so, I am reminded of one a number that really touched me even prior to my diagnosis. Danced by Ade and Melissa, it is a tribute to a woman suffering from breast cancer and her husband's role in supporting her. I dedicate this to my Steve and all those who have supported me thus far and during the rest of my journey. Enjoy.


Tuesday, December 1, 2009

Life Seems Normal...

Life seems normal today. I went on a walk. I visited with neighborhood friends. I mated socks. I hate a half of a Kashi veggie pizza. Mom was here all day. She is a good reminder that I need to keep moving. She has the perfect touch. I like that.

So chemo, post day one - CHECK!

Chemo was an interesting experience. I sat in a very comfortable recliner. I had three drugs, given sequentially, through a IV in my left hand. My nurse's name was Norrie, but all were very friendly and helpful. They scanned my medical ID bracelet for each dose, whether it be saline (used to flush my veins) or for the anti-anxiety meds they gave me (also given for nausea). They had another nurse double-check the labels of the drug against my medical record and made me state my name with each dose. For my RCHSD colleagues, these procedures all were established with implementation of Kaiser's EPIC system, which now they really like. Norrie told me that the system was really cumbersome in its inception.

My mom sat with me all day. It took longer than I expected, but then I got really nauseated on my last does of meds and they stopped it for a while, giving me more Adivant through my IV (I had had it in pill form earlier). I even got up to use the bathroom connect to my IV pole. They offered to help, but as I know the kids at RCHSD do this all the time, I knew I could handle it.

I received numerous well-wishes throughout the day via texts, emails and Facebook posts. I even got more flowers upon my return home! All of which were greatly appreciated, but my favorite part of the day was the visit from my dad, Darin and Kelly. Darin and Kelly were on their way back to Portland. They lifted my spirits and Kelly even gave me a mini-clinical exam! My family has been absolutely fabulous through this all. Darin and Kelly were not even supposed to be in San Diego for Thanksgiving. (I have to say many, many thanks to Kelly's family for their generosity!)

So back to today, my post chemo drug regiment is rather intense. I have three drugs just to control my nausea. I even had to give myself a shot to help my poor little white blood cells. I suppose I will get better at this as time goes on. Steve and the kids are now home. They washed their hands upon walking in the door. Harrison was pleased that I got out of bed and went for a walk. Steve is preparing a sumptuous dinner, provided by some of his RDR colleagues. Both kids are watching TV - I am assuming they have done their homework. Life seems normal....tomorrow, I assume more of the same.

Sunday, November 29, 2009

Tomorrow is just another day...

The day is winding down and tomorrow I begin chemotherapy. It is a roller coaster, a relentless journey of heartbreak, tears, giggles, discovery, friendship, family and love. The roller coaster as described is not just my own, though I like to think I am in the driver's seat. Funny thing is, as days go by and I learn and I discover more, I realize that really, I am not. Some people will say that my health is "in God's hands" and I believe this to be true. Regardless of spiritual beliefs, a certain part of me also suspects that the idiocracy of the cancer is what is really in control and that is what is unpredictable and scary.

That being said, as has been my practice where possible in my adult life, I try not to worry about what I cannot control. I am confident that we have chosen the right form of treatment. I gain more confidence every day through the incredible resources we have amassed through family and friends.

Tonight, I talked to our good family friend, Dr. Galen Hansen. While not having reviewed any of my medical records, he gave me some good indicators that I wanted to share:
  1. I had a chest x-ray on 11/17 and I never heard results. In his experience, if there was something in the x-ray that indicated more cancer or cause for concern, I would have heard by now. (This confirms the PET scan reading as well.) He says that the chest x-ray is one of the tests they use as a preliminary indicator.
  2. My liver panel (a blood test) is normal. This is one of the test results that I can view online. Dr. Hansen said that if there was cancer in the liver, the panel would read much higher.
  3. My hair falling out means that chemo is working. Chemo kills all fast growing cells; hair grows fast, i.e. if chemo is causing my hair to fall out, the cancer must be dying too. :-)

I thrive on these positive indicators. I plan to focus my energies on the positive, thus worrying about what I can control - my reaction to indicators and response to my struggles. I have to give credit here to my Weight Watcher triumphs and my Weight Watchers leader, Judy Minich. When I think about my forthcoming chemo journey, I know many of these concepts will apply.

For example, Weight Watchers teaches us to make the best decisions we can for ourselves at every meal. If the best decision we can make for ourselves at dinner is to have a piece of chocolate cake. Well, that is still the right decision for us in that moment. Therefore, as I move forward in my struggle with cancer, I plan to make the best decision I can for myself, Steve and the kids, at every moment of every day. Since I cannot worry about what I cannot control, there are no wrong decisions to be made in the short run.

Another good Weight Watchers concept is not to complain to yourself about what you can and cannot do. I still hear Judy's voice in my head when she did a role play about not wanting to exercise. It went something like, "It is too cold to excercise. I do not want to, " said in a two-year-old tone of voice. This self-defeating pity-type talk does you no good. Try it, you will feel silly. Moving forward, I know I will have moments where I may feel sorry for myself. I am thinking that mimicing myself in a two-year-old's tone of voice will get me back on track.

And I could go on and on.

Succeeding in Weight Watchers is one of my greatest accomplishments to date. I plan to carry these feelings forward, as Judy taught us to celebrate our successes no matter how small. And that is exactly what I will be doing for every success in my cancer journey and this is what I will be doing tomorrow, post chemo-treatment. After all, tomorrow is just another day....

Judy, thank you so much for all that you have taught me! You are awesome!

A special thanks to Dr. Hansen too. Especially since Steve's dad is not around to talk (what Milt did so exceptionally well), it means so much to have friends that are so close to Steve's family just a phone call away.

I Always Wanted to Be a Red Head

Wig shopping - CHECK! Several of my friends had offered to go with me, but in the end, I most wanted to share the moment with my mom, Kelly and Madison.

When I walked in the shop, The Brighter Side, it was nothing like I expected. Based on the recommendations I had received and the fact that it was in Solana Beach on Cedros Ave, I think I expected somewhere between a high fashion salon and cute boutique. What I found was much better. The ladies who helped me were warm, caring and very helpful. They talked to us about the different kind of wigs and colors for my skin. The shop was very nice and carried a lot of other accessories which I guess will come in handy, at a later date.

I tried on every type of wig, short, long, curly, straight and everywhere in between. I even found one that matched my current hair color exactly - less the purple highlights. The style also was very similar to my hair and could have easily been mistaken for a fresh haircut. However, in the end, it was Maddie's suggestion of red hair the won the day. The auburn wig was the perfect mix of style, color and to be frank, fun. Might as well sneak some of it in somewhere!

I made the appointment for the official fitting and styling session. At this appointment, I will leave wearing the wig, i.e. I will not have any hair, or very little. The appointment is December 12. It seemed kind of strange to make the appointment for which I need not have any hair. In the long run, I think emotionally it will be much easier for all, if we cut my hair short, rather than watching it slowly fall out. That may be more than I can bear.

As I prepare to pack away my blow dryer, hair accessories, flat iron and styling products, it brings me comfort to know that a stunning red head will make an appearance very soon. I just hope I can master styling the wig without heat (heat ruins the wig). Otherwise, I might just be dawning a baseball cap!

Special thanks to my mom and dad for buying the wig. Your support in this way and hundreds of other ways is what is giving us the strength to get through this! Love you.

War Paint

My good friend Julann has been putting different color streaks in her hair for the past six months or more. Not all over her head, just a few here and there in the bottom layers of her beautiful red hair. I have always thought it was cool.

When I received confirmation from clinicians at Kaiser that I was going to lose my hair during my chemo treatments, I decided there was no time like the present to imitate Julann's prowess and give my locks a new look.

I posted the following on Julann's Facebook page: "I think my hair needs some purple streaks before chemo." Little did I know that several of my neighborhood friends would join me, hosted by Julann at her house last night.

We were also joined in by my sister-in-law, Kelly, who also put streaks in her hair. Darin was there too (We tried to get him to die his beard half purple, half pink - but he was not up for it.) Having Darin and Kelly there was so incredibly special.

So last night, I posted on my Facebook page, that I was dawning "my war paint". I have to say that never was there a girl so lucky to have such great friends who would dawn the war paint right along with me. I have been truly touched by all the love and support in all of its many facets since my journey started but never have I felt more adored than I did last night.

Thank you ladies, those there in spirit and support, and the daughters that participated too, Charli, Piper and my Maddie. While I know I had "my moment" (Jean, my colleague at Rady Children's, would be proud), I do not think I will ever be able to express to you how much you mean to me or how much I will always cherish that "moment". Love you!

Thursday, November 26, 2009

Books, Books and More Books

So, I started reading last night. the Mohamed Family from Rancho Del Rey Middle sent home a gift bag containing two books, Just Get Me Through This and The Breast Cancer Husband. (They also sent a Breast Cancer Dammitt Doll for which I can focus my frustration!) Just Get Me Through This was previously recommended to me by someone in my support group at Scripps Polster Breast Care Center. So, I perused through it last night.

What did I learn? Well, some of the same that I learned in chemo class - but also practical tips on how I can mentally and physically survive my eighteen weeks of chemo (As a reminder, I have six sessions which will occur at three week intervals). Some of my favorites include:
  • Do not take anything with me to the chemo session that is not disposable, as I will forever associate that item with chemo and its side effects;
  • Transform chemo into an outing - add a celebration to the outing to celebrate completing each treatment;
  • Record ALL symptoms/side effects that occur during the first 12 hours of treatment, especially. This will help docs adjust meds if needed; and,
  • Appoint at least one social director - so that I have something to look forward to each week, that I do not have to think about and plan.

And these are only from one section of the book.

I have been discouraged by Dr. Sweet from researching my condition on the Internet and I agree with him wholeheartedly. However, I am very grateful for all of the reading materials bestowed upon me by well-wishers. I anticipate that each book will have an informational gem (or two) such as those listed above.

Whether we get through them all is a different story. I had a random idea that I should ask for volunteers to help me read some of the books but am thinking that is a little far fetched. Anyone game?

A special thanks to Donna Mohamed (and Jefferey) for the generous gifts. Donna, your note was very thoughtful and I may just be calling you!

Tuesday, November 24, 2009

I will never fall down...

It is hard to describe this feeling I have. I have never felt anything like it, nor do I expect to again. Tonight at dinner, while talking to Steve, I was finally able to put it into words.

Every minute of every day, I am barraged with support of all shapes, sizes, forms from all different types of people, friends, colleagues, family, friends of friends and even complete strangers. People have offered to help me with all aspects of my life. Things which we all take for granted every day. Things I would never ask for help with. Things that I hope I never need help with. It is overwhelming and wonderful all in the same breath.

The analogy I came up with tonight is that I have decided that I can never fall. It is like there is a large group of people surrounding my every move and my every need. Not physically but more in a spiritual sense. Almost like a family of shadows, raising me up, kind of like the song (my RCHSD colleagues know what I am talking about). This feeling of someone always being there to "catch" me gives me so much confidence and strength - too much to even put into words.

I know we all have our own religious beliefs - I definitely have mine, which I will not share here. But beyond religion, this support, for lack of a better term, is a gift I will cherish for my lifetime. From the bottom of my heart, I thank you all for your past and continued efforts on our behalf.

Finally, some good news....

On Monday, I had a PET scan, a scan using radioactive isotopes to help doctors locate cancer in the body. The test itself was pretty straight forward: They measured my glucose level by pricking my finger and gave me an injection of a glucose solution (hence, the reason I had to fast for six hours prior to the test and could have no carbs/sugar that day). After given period of time, they led me to another room where there was a big tube-like scanner. I laid down, took a nap, and was done.

Simple. Yes. It was the implications of the test that scared me more than I ever would admit. To understand my frame of mind, two past conversations need to be considered:

1) Dr. Duree, my surgeon, on 11/13: Your cancer is AT LEAST stage three. At stage three, you have a 50/50 chance of living five years. At stage four, you have a 30-percent chance at living five years.

2) Dr. Sweet, my oncologist on 11/17: A curative method of treatment is most appropriate for the cancer you have right now. Once we have the PET scan, if more cancer is found, we will consider moving to a control method of treatment. He went onto explain that a control method of treatment moves away from the idea that the cancer can be cured and focuses on extending my life by impeding the growth of the cancer. Under this method, aggressive chemotherapy is not used because the patient needs to be kept more comfortable, i.e. they have a much longer battle and presumably a lesser chance of survival.

Please know that the conversations are out of context and paraphrased. However, they are what was replaying in my head for the past week. Admittedly, I am not at my best on an empty stomach - so between that and my nerves, I was not in a good place on Monday afternoon. That being said, I got through the test and Steve, the kids and my radioactive self, went out for a nice steak dinner last night. Never had filet tasted better.

So, the good news.....I spoke with Dr. Sweet today and preliminary readings of the PET scan do not show any definitive signs of cancer elsewhere in my body! This means that the curative method of treatment that Dr. Sweet has recommended stands! Dr. Sweet also let me know that the HER2 test came back negative. Cancer that is HER2 positive is generally more aggressive - so this is good news.

I feel like a giant weight has been lifted off of my shoulders. I know we have a long battle ahead of us, still. However, tonight, Steve and I celebrated as if we had won the lottery. Maybe we should have bought a ticket?

Monday, November 23, 2009

Today, I feel like a beauty queen....

My colleague and friend, Becky Robinson was already planning to walk the San Diego Susan G. Komen 3-Day Walk when she learned of my battle with breast cancer. Last week, she offered to walk in my honor. I was extremely touched and honored.

When I returned to the office this morning, post the 3-Day, I was touched even more by Becky's generosity and the efforts another friend/colleague, Amanda Austin. Amanda made Becky a satin pink sash with white ruffles. My name on one side and "For a Lifetime" is on the other. Becky gave it to me this morning, showing me pictures of her wearing the sash and others she met on the walk trying it on. She also told me stories about how she had worn it the entire length of the walk and the well wishes she received when she told my story.

Wow. That is all I can think of to say. I have the sash on now. And I do feel like a beauty queen, wrapped in love and overwhelmed by the support of friends and family.

Anyone who knows me, knows that I am not an emotional person. I do not cry in sad movies, etc. I was fighting back tears on this one. Thank you, Becky and Amanda. You too are truly special ladies.

P.S. Here is the link to Becky's website, should you want to check it out: http://www.the3day.org/goto/beckyrobinson

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Saturday, November 21, 2009

Chemo Class...Reality Visited

The reality is that I have to have chemotherapy. I think we all have heard stories. One general presumption is that when undergoing chemo, one loses their hair. From witnessing my Aunt Debbie's battle with cancer even from afar, I knew there are other side effects too - most not so pleasant. As I have shared my story, more and more I have heard of still additional side effects and gained a lot of advice on how to deal with them. However, to sit in a classroom and talk about these symptoms all at once and the fact that I was required to attend the class - well, that makes it real.

So, there my mom and I sat today, in a room full of cancer patients who were all much older than I, absorbing information on side effects that we both hope will not occur. We also know that some of them are inevitable.

Depressing? A little. But as the class ended and my focus shifted to making lunch for my kids, attending my son's last soccer game and the demo of Steve and my master bedroom, I am reminded that chemo is merely a starting point on my road back to health and how much I look forward to being entirely healthy again. You know, whether I have had this cancer for five years, five months, or five weeks, I have not felt 100% in quite some time and I am excited for the day when I do!

P.S. My mom and I hung out after class and asked some very direct questions regarding medications, etc. (Health care professional shop talk strikes again! Please see prior entry in this blog.) The nurses at Kaiser were kind enough review my medical record and go over with me the meds that Dr. Sweet has prescribed and more side effects that may come from TAC chemo. Not to excited about the mouth sores that I am almost guaranteed to have but the nurses' confirmation/explanation of what they saw on my medical record was really helpful. My confidence in Kaiser continues to increase! (It is important to also note that the nurses like Dr. Sweet.)

P.P.S. Thanks Mom for going with me today! Love you!

Thursday, November 19, 2009

Why I am glad I am a medical professional

Today, I had the MUGA test to test the strength of my heart. No results yet, but it was interesting none-the-less. With all of the time that I have been spending at Kaiser, I have found that it is in my best interest to talk about my work at Rady Children's whenever possible. So today in the Kaiser's Nuclear Medicine Department, I talked about Heparin. Not because I know a heck of a lot about it, but because I know just enough about it to be dangerous, thanks to the Cardinal Health Patient Safety Grant that I worked on last year. (Special credit to my colleague and Rady Children's Patient Safety Officer, Rich Richards for writing the grant.)

The funny thing is when you can "talk shop" or Heparin, in this case, clinicians automatically explain procedures to you on a different level. They relax and they remember you.

Turns out, I am going to have to have more than one MUGA test throughout the course of my chemotherapy - to be sure that the strength of my heart is not decreasing due to the toxicity of the chemotherapy drugs. It gives me great comfort to know I am making friends in all of the right places.

Wednesday, November 18, 2009

About the Young Survivors Coalition - my new best friends

YSC Mission Statement

Young Survival Coalition (YSC) is the premier international organization dedicated to the critical issues unique to young women and breast cancer. YSC works with survivors, caregivers and the medical, research, advocacy and legislative communities to increase the quality and quantity of life for women diagnosed with breast cancer ages 40 and under.


Tuesday, November 17, 2009

Nip It - My Breast Cancer Journey

So I here I am - 38, with a diagnosis of breast cancer. My life was much different two weeks ago, prior to my visit to Kaiser's Women's Clinic for my required check-up. I was glad to be there, do not get me wrong, as I had felt a strange tightness in my right breast when I was home sick a couple of weeks prior. I was so sick at the time that I really shrugged it off, considering a weird form of chest congestion. In the back of my mind, I think I knew something just was not right; hence, not postponing my scheduled appointment.

Then, reality hit. I have a tumor the size of a golf ball in my right breast. About 3.5-4 cm., to be exact. They biopsied the tumor and it came back malignant. They also found that at least two lymphnodes are enlarged. They did not biopsy those - they were planning to remove them - cancer or no, just based on their looks.

So, check out this time line:
Thursday 11/5 - Women's Clinic, referral to Breast Clinic
Friday, 11/6 - Breast Clinic calls me
Monday, 11/9 - My visit to the Breast Clinic, where they kept me for the mammogram, ultrasound and biopsy. At this point we knew it was not a cyst.
Thursday, 11/12 - Test results come back on biopsy - I have cancer. Kaiser Surgery calls for an appointment that afternoon.
Friday, 11/13 - Kaiser Surgery appointment - tumor is not operable.
Tuesday, 11/17 - First Oncology appointment. Whew!

Mind you, there is no cancer in my family medical history - that is genetically tied to me, anyway. So, you can see where this has totally hit me out of left field.

What I can tell you is that the kindness of others has completely blown me away. From the awesome goody basket from my "Green Elementary Family" to my flowers from Carrie and Randy to my fellow soccer mom Charleen, who is scheduling dinner delivery for us for December to mine and Steve's colleagues and my boss and of course, my family - mom, dad, Darin, Kelly and the fabulous Ward women (and Tom, too)! And there are many, many more. Please know how much I appreciate each and every contribution, thought and/or kind word. I may not respond - but I do see them all, and they all give me strength!

Steve has been awesome - as Jan says, "he is a saint." My kids know, of course, and have assured me, in their own words, "its ok, mommy, not everyone dies of cancer." Not to worry all - I am going to "nip it" in the bud!

Support Found

While I love you all dearly, there is nothing like sitting in the room with a bunch of 30-somethings who all have or have had tumors the size of golf balls or greater to compare notes on cancer treatment, losing your hair, kids, mothers, colleagues and all the ins and outs of "slaying this dragon".

My good friend and colleague, Chris Meyer, introduced me to Bev Mangerich, RN, BSN at Scripps Polster Breast Care Center. Bev invited me to a support group for women suffering from breast cancer who are under the age of 40.

I have to admit - I felt understood in a way that I have not felt before, at least for the last week anyway. And Chris sat right with me too, sometimes holding my hand and the whole time taking copious notes for me to refer back to. What a great friend.

What a fabulous group of women. Thanks, Bev and Chris - and all those who were there tonight. You all inspired me - and I feel hope.

P.S. Before Chris came to Rady Children's, it is important to know that she helped raise philanthropy for the digital mammography system at Scripps Polster Breast Care Center.

Oncology Revealed

Today, Steve and I met my oncologist, Dr. Thomas Ira Sweet. Right away, we were comfortable with him, discussing the basic logistics of Steve and my life together kids, jobs, where we met, what not. Dr. Sweet is funny - truly a great sense of humor. I suppose this will be important as we move into heavier conversations. He has been an oncologist for 20 years and his wife grew up right in San Carlos.

He playfully dispelled some of the misconceptions that we formed after seeing my surgeon. Mainly, that I have had the tumor for three to five years. He says that surgeons have their formulas and that is how they view things. In his experience, he states there was no real way to tell how long a tumor has been in place. (This was later confirmed by members of the support group that I attended at Scripps Polster Breast Care Center.)

Anyway, to get down to the nitty gritty, we learned that my tumor is hormone negative. This is not necessarily bad news, just not exactly as we had hoped, in that it limits the types of chemotherapy that will be effective. Based on this information, we have scheduled my first round of TAC (docetaxel, doxorubicin and cyclophosphamide) chemotherapy. We are still waiting for HER2 test results, which could again alter the type of chemotherapy.

He also prescribed a MUGA test, which will test my heart function for a baseline, (while on chemo, there is a potential risk for heart complications). This test is schedule for Thursday morning. Lastly, I am scheduled for pet scan on Monday. The pet scan will tell if the cancer has metacticized elsewhere in my body, which of course we all know that it has not ***fingers are crossed***.

Chemo starts November 30! Wow. It is all so surreal. I guess I better eat a lot of turkey.