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:

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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.