I, like so many others, was saddened to hear that Elizabeth Edwards had lost her battle with cancer.   I continue to be inspired by the strength and grace she showed during her illness.

She survived 6 years from her original diagnosis and 3 years after her cancer metastasized.   Not the numbers I'm hoping for, so my mantra last week was, "She is not me -- everyone's journey is unique."

When I was first diagnosed, I wasn't sure I would be one of the 20% who survive longer than 5 years with Stage 4 cancer.  Now, through learning more about my disease and having faith in my doctor,  I'm not expecting anything less.  That being said, the news brought back thoughts that had been quiet for a while. I tried to reason through them by asking, "How is her story different than mine?"  Such is the life of a cancer patient -- always trying to make the stories of others fit in with our own hopes and dreams.

I'm also remembering that I told Dr. Kaplan I was depressed around Olivia's birthday, wondering how many birthdays I would share with her.  He replied, "I think you'll have many more birthdays with her."  Granted, he said, "I think" but "many" is more than 3, right?  My plan is to throw a party to celebrate my 10th year as a survivor.    Sound good?

I almost wrote a "damage control" blog last week because I read two articles that said, "Elizabeth now has cancer in her liver and there's nothing the doctors can do".   That's not universally true (which I am an example of) and I have my doubts that it was exactly true for her.   These were news articles, not medical articles.   I know one person whose liver tumors have been in remission for 4 years and there's no sign of them returning.  Those are the stories we like to hear!

Last week was rough and I'm not sure if it's because I didn't get much sleep (thank you, holidays) or if my body is ready for a break and recovery is taking longer.  I've made it a priority to get more rest and drink a lot of water this week, which seems to be helping.  I do have a cold and sore throat but hopefully that won't last long.

I think I'll have another scan in January and afterwards I'd like to be on a reduced treatment schedule but I may have a few more rounds at this pace.  Either way,  I do believe a change is coming (and needed).   Dr. Kaplan often reminds me that the "trade off" is worth it.  Feel crummy for a few days and deal with the other side effects OR still  have the same amount of disease I had when I walked in to his office and not be able to do many things that I do now. I get it but some days I gotta complain.

On to more fun things -  the kids are enjoying the holidays and this might be the year we remember as being the most magical.   They all understand the true meaning of Christmas and want to make sure we do something for baby Jesus, but the spirit of Santa is also alive and well. We went to a Christmas party and the Santa was so believable that Olivia wanted to look for his sleigh and reindeer because she knew they had to be there.  And the boys' preschool Christmas program was precious.  Daniel and Ryan sung their hearts out while Olivia and James were shepherds in the live nativity.  I'm sorry all of you missed James walking in carrying a stuffed lamb.  There will be pictures.  One of the things we miss about living near family is being able to share these moments with them (and share in theirs), so we're especially grateful to Meghan and Asa for sharing that afternoon with us.

Off to drink some water and get some rest --- 

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There might be one or two things I'm not thankful for this Thanksgiving but

my gratitude list is much longer.

My list includes:

-James, who has always been an exceptional father and partner and is now

taking on some of my responsibilities.  He never complains and often says he

doesn't feel like he does enough.  I worry about him because I don't think

it's possible for him to take on more but I also know that he's driven to do

as much as he can to lighten my load, both physically and emotionally.

-James' job that allows him the flexibility to be here when he needs to and

the managers who understand why that's so important.

-My wonderful children who continue to surprise me with the depth of their

kindness and compassion and are daily reminders of why every step of this

fight is worth it.

-Our friends, family and even casual acquaintances who have stepped up in

ways beyond what we could have imagined and in ways that we can never repay.

As Christmas approaches, I wish I could give each of you a gift to let you

know how much you mean to us.  For now, know that you're in our prayers and

that we're touched by your kindness everyday.

-A church community who welcomed us from the first day we attended and

continues to be a shining example of what "giving" is. From people who

knew us just to say "hello" at church to friends we've made over the years,

they've all shown us what it means to care for someone else.

And the list goes on.  If I try to mention everything, I won't be

done until Christmas!

Blessings to all of you today as you share your own gratitude with those you

love.

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I received a call from Dr. Kaplan while we were on vacation. He had a question about my last scan and wanted me to have a more detailed PET scan as soon as possible.  I scheduled it for Monday morning, before my treatment. That made for a LONG day but I wanted to get it done and off my mind.

Part of me wished I hadn't answered the phone and didn't have to think about it while we were visiting the "Happiest Place on Earth" but I was distracted enough not to worry about it too much. I fluctuated between thinking there might be radiation or a more difficult treatment in my future and then thinking I was going to have the best results Dr. Kaplan had ever seen!

That wasn't exactly what happened but the news was good.  All of the tumors are responding well to treatment and many are estimated to be 90% scar tissue! Dr. Kaplan isn't ready to change my treatment schedule but he said I might be able to early next year. All of the symptoms I'm having now are chemo-related, not cancer related, so I’m really looking forward to having a less intense treatment schedule. Patience, patience .........

For now, I have a little better attitude about treatment.  It's easier to handle chemo when I know it's working and I can imagine it destroying the last bits of disease.  Being me, though, I had to look up what it means when there's scar tissue forming and how long those tumors will be controlled. I didn't get any solid answers, although having a good response in the first few months can be a good indication that the tumors will "stay put" for a while. That's what we're hoping for!

These results also reminded James and I of how thankful we are to be seeing Dr. Kaplan. If I had stayed with my original doctor, I would have had 10 treatment sessions instead of 18 and with only one drug, instead of two, I don't believe I would have come this far.

James, Dr. Kaplan and I were all pretty happy in his office that day.  If I had to come back from vacation, that was a nice way to return.

And about our vacation -- we went to Disneyland!  James and I debated about it for a long time and then decided it was the right time to go.  It's a little quieter this time of year, the kids are at a good age to appreciate the park and Olivia only missed three days of school.  Even with the 90 and 100 degree temperatures, we all had a great time.  We also saw some friends and spent an afternoon with my cousin. It was a nice trip with good family time.

I was worried about how I would feel while we were there, but I felt better than I have in a long time.  I might have been a little more tired than most parents who bring three children to Disneyland,  but not much.  I was close to coming home early one day but pushed through and was glad I did. Given that I was having trouble walking a few months ago, it's pretty amazing that we had a successful trip to Disneyland with three kids in hot temperatures.

Once again, thanks to all of you for your support and prayers.  I know they're working!

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The weeks are going quickly.  So quickly that I barely remember my week off!   I know it was a combination of "normal" and trying to catch up with everything in my life.  I did see the ophthalmologist and my eyes are healthy, except for the temporary chemo side effects.  I asked the doctor if I can get new glasses or if my prescription will continue to change. He gave a long explanation about how the chemo affects my eyes but also said new glasses would be a good idea. YEA! I'm ready to see better and I'm also ready for a new look (like my hair isn't enough --). 

This week Dr. Kaplan asked how I was doing "other than medically", so I talked to him about some of my concerns, including that my prognosis must be affected by the sheer number of tumors I have.  He said that's not necessarily true, especially with breast cancer.  He gave the example of lung cancer, which often follows a predictable pattern.  There are many treatments and drugs available specifically for my kind of tumors, so the course is much less predictable (in a good way). No guarantees, but at this point there's no reason to think otherwise. I left his office feeling "lighter" than I have for a while.  Another reminder that I need to ask those questions.

My blood count is back where it should be.  For now, "3" is the magic number for shots. Week 2 of this treatment cycle was a rough one.  I still didn't feel well on Friday, which sometimes happens after week 3, but not usually after week 2.  I'm a little anxious about what the next few days will bring but at least I won't have treatment next week. When I feel better, I'll feel better for a while.  That thought actually made me smile. 

I'm going to have a CT on Friday and I'll get the results when I return to treatment on November 8.  This set should give a more accurate picture of how the chemo is working. I'm telling myself that the results won't be dramatically different than two months ago and Dr. Kaplan is just looking to see if there's been any change.  And there's no reason to think there hasn't been ---

I did find someone to talk to about my crazy life and emotions and I was also assigned a cancer buddy, although I haven't called her yet. It's hard to find a quiet time but I'm hoping to soon.

I participated in a breast cancer research study two weeks ago.  The study is looking at why some women under age 45 get breast cancer and others don't. They asked many detailed questions, some of which I couldn't accurately answer. Do you know how much you weighed when you were 12?  Or how many times you've had a fever over 102?  How about what medications you've been on since you were 18, including the dosage? I'm not sure if I came close on some of the questions but the researcher assured me it was okay. 

Olivia's birthday was Friday and she had a special weekend.  Thanks to everyone who made that possible by helping with preparations and/or sharing in the celebration.  Everyone is looking forward to Halloween, of course.  Watch for a darling Dora, Buzz Lightyear and "Super Why the Super Reader".    If you don't see them, I'll be sure to post pictures.   Enjoy your spooky weekend!

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I was surprised that I was emotional for a few days after receiving the test results, even though they were mainly positive. I'm sure it was because they brought everything to the forefront again.  I never forget what's happening but my feelings are often in the background while I'm getting on with my day.

I did talk to Dr. Kaplan about what the test results mean for future treatments.  I was only scheduled to see the nurse that day, but I asked to see the doctor so I could get my questions answered sooner rather than later. I was proud of myself for getting the information I wanted and I felt better afterwards.

As I suspected, it isn't typical for tumors to respond differently to treatment (some are smaller and some started to calcify). And the tumors that stayed the same need to be watched closely.  I'll have another scan in 2, rather than 3 months, to determine if it's time to make changes. The good news is there are several treatments for stubborn tumors (including radiation, although that's not the next step).   I don't know if I'll like all the options but it's good to know there are many treatments available.

I've had some vision changes lately which have two possible causes. One is an annoying chemo side effect that I need to live with and although the other is rare (occurs less than 1% of the time), it's more serious.  I'm going to see an ophthalmologist to confirm which it is. 

My white cell count was low this week. Low enough that Dr. Kaplan considered not giving me treatment.  We went ahead because it's the last week before my break and I received a "booster" white cell shot.   I’ll be back to 3 shots a week when I return to treatment.   This wasn't unexpected and I'm used to giving myself shots, so it's a side effect I can easily deal with.

The social worker/counselor I contacted came by during my treatment two weeks ago.  She listened to my concerns and gave me some ideas to help get through my more difficult moments. She isn't available on a regular basis so I asked her about finding someone else who has experience with cancer patients. I'm still searching and hopefully I’ll find someone soon.  No call yet about a cancer buddy.  It's a little discouraging that there isn't a good match for me at this time but I'm trying to be patient.

Something new for me --  I wore a scarf in public.  Not anywhere I'd see someone I know but it's a start.  The wig isn't uncomfortable but I don't always feel like wearing it.  Olivia told her friends I have a wig and now she's afraid she's going to be embarrassed when I volunteer in her classroom this week.  She's not usually bothered by it so one of her friends must have said something to make her feel bad. I'm a little sad that her acceptance of my wig has been diminished by 1st graders.  Silly me - I thought this kind of thing wouldn't happen until she was older.

Olivia loves playing soccer and she's doing well for a beginner. She told me she tries to keep up with one boy on her team because "he's the fastest and scores the most goals".  I was impressed that she's trying to figure out ways to get better on her own.  It made me smile to watch her play with dolls before the game, then easily bring out her competitive side when it was time. Gotta love that girl.

After watching Olivia play soccer, the boys asked to be on the team but they'll need to wait until next year. For now, they're enjoying preschool and Ryan is quickly absorbing all he's learning about letters and sounds.  Daniel keeps talking about a little girl who wants to kiss him!

As we were leaving Target last Sunday, there was a "mini storm" and I decided we should run to the car, rather than wait it out. We all laughed as we got drenched in the cold rain.  The kids thought it was the greatest thing ever and want to do it again. I'm not in a big rush but I loved the good energy that lasted until dinnertime. You never know when those moments will come.  On another day, we would have complained that we were cold and wet!

I'll write again in a couple weeks. I'm looking forward to not thinking about cancer (at least as much) until then.

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About my recent scans --

The actual tests were easier than the ones I originally had, mainly because I'm not a fan of the MRI experience and I had two in May. The other test I had in May was a PET scan, which isn't a big deal except you can only eat lean proteins (with no marinade, spices, etc) and certain veggies for 24 hours before. That fell on Mother's Day and the only things I ate were plain baked chicken, celery and green peppers. Yum. The PET scan also includes being injected with radioactive dye and sitting still for an hour before the test (no reading, etc). None of that on Friday. I think Dr. Kaplan rotates tests, so both of those are likely going to be part of the next round.

But you don't really care about that, do you? You want to know what I learned YESTERDAY.

 Overall, the scans show good improvement.

 The tumor in my breast has shrunk by approximately 40%. That's good but at this point it isn't doing any harm, no matter what size it is. It was responsible for passing the cells on to my lymph nodes, where the bigger problems started. But, progress is progress.

The lymph node tumor shrunk by 50%. That's more significant. Getting that under control will help keep everything else stable.

The rest of the results aren't as easy to put percentages or numbers on, mainly because I had different tests this time, so there isn't a 1:1 comparison.

Many, but not all of the bone tumors show scar tissue, which is a good thing. That basically means they're dying. Others have shrunk but don't show signs of scar tissue, which is good in a different way. It also sounds like some of them have remained the same size. I'm not sure I'm thrilled about that. It's good that they aren't bigger but why aren't they doing anything else? That's one question on my list, although I suspect the answer will be my favorite, "It's too early to tell". I asked the nurse and she said some "hang out" for a while and then they shrink quickly. Others might not respond to the current meds and at some point we'll know whether it's time to try a new drug. More waiting and "what ifs".

 And finally, my liver. That was the hardest to compare to the last scan so we still have to base some of the results on my clinical exams. The fact that I have a normal size liver, even though many of the tumors appear to be the same size, means something good happened that wasn't visible on the test. There is evidence of scar tissue in many, but not all of the tumors. More info will come next time. I do have a couple questions about the report, which I’ll ask next week.

 Lots going through my mind but I'll save that for another time.

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The end of the summer went quickly and although we're not in full swing for fall, I already feel the change in our days.  

There's been a small change in my clinic visits -- Dr. Kaplan gave me the option of seeing him or just the nurse.  Last week I only saw the nurse but I'll probably choose to see him every other week.  My wait is a little shorter when I don't see him but the nurse still needs to confirm the treatment orders, so it doesn't save me much time.

My scans (CT and Bone Scan) are scheduled for Friday, September 10th and I'll get the results at my next appointment on Monday, September 13th.  I'm pretty sure I'm the person least interested in the results because to me it won't be "bad news" or "good news", it will just be "news".  Based on how I feel and my clinical exams, I know the tests are going to look significantly better than they did 4 months ago. I will ask Dr. Kaplan what the results mean to him, although I suspect he'll give a general answer about it being good news today and that the results confirm the treatment is working so we'll continue on this schedule. WHICH I ALREADY KNOW! Will he be able to tell me where I’ll be three years from now? Nope. Is that what I really want to know? Absolutely.  Well, sort of.

That being said, I am curious about my bones because they aren't easily assessed through a clinical exam. Those darn tumors can damage the bone and although I'm on two courses of treatment to combat that, I really have no idea how they look and what restrictions I'll have on my daily activities (right now I'm being very careful).

Welcome to my frustrating world.  I do appreciate feeling better and I'm thankful that we had a much better summer than I expected, chemo and all.  But it's very hard to accept that there won't be any real answers -- just steps along the way.  I'm hopeful about having LOTS of steps in my future but it's not an easy way to live.  At least if you're wired like I am.

My emotions are tiring and when added to the fatigue from my treatments, I know I haven't been at my best.  Last week I asked the social worker at the hospital to put me in contact with two people.  First, a social worker who serves as a counselor for patients receiving treatment (I'd like someone to talk to "as needed", maybe just over the phone) and a "cancer buddy" provided by the American Cancer Society.  She'll be someone close to my age, with a similar diagnosis, hopefully with young children and several steps ahead of me in her cancer journey.   I need someone who has been there to say, "This sucks but it gets better".  I've been beating myself up about not having my emotions under control or being able to truly take things "one day at a time" (although I'm trying and do pretty well some days).   A dear friend reminded me that although it seems like I've had cancer for a long time, I was only diagnosed 4 months ago and it's okay that I haven't worked everything out.

Moving on -- I had an unusually good time at treatment last week. It's never a bad experience but I laughed a lot. I'm not sure why but here's a "thank you" to Callie for being a part of it.  It also helped that the nurse seemed to appreciate my sense of humor.  Or, she was humoring me!

The boys are happy, Olivia loves being back in school and I'm grateful that our new baby-sitter (and friend) is working out so well.  All blessings.

My goal for this week is to have it feel as "pre-cancer" as possible.  The boys start preschool, Olivia has her first soccer practice and I'm hoping to meet James for lunch one day. 

And finally, many of you have been asking about my upcoming scans so I will post the results as soon as I can.  Thank you again for all of your support and encouragement.  It continues to make a difference and we don't know what we'd do without all of your thoughtfulness and prayers. As difficult as things can be, we never lose sight of how blessed we are to have so many amazing people in our lives.                               

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