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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I have a little catching up to do because I've had two appointments since I last wrote. Here's the news from three weeks ago:

I went to that appointment having had two shots instead of three because I forgot to give myself one over the weekend (yes, I really forgot).  My white blood cells were fine so I'm back to two shots.  The numbers may fluctuate but for now it's good news.

Dr. Kaplan called me a wonder child that day (Child? Really? I'll let it go --) and for you  baseball fans,  he said "star hitter" the next week because I'm tolerating the treatments well and showing consistent improvement.   I'm not sure what "wonder child" (or star hitter) translates to medically but it was nice to hear before I had my week off.

I'll probably have a scan the week of Labor Day and have some news by early the following week.  We all know it's going to be good -- we'll just have to see how good.

My friend Nancy, who also sees Dr. Kaplan, went to treatment with me recently. Her story is different than mine (she received a more difficult treatment for a different type of tumor and she's currently cancer free) but I found myself being more honest with her than anyone else I've talked to.  She was very positive, while still supporting my fears with similar stories of her own.

We had a special time at Cannon Beach, which has become one of our favorite places (we know where to get the best ice cream and salt water taffy -- what more do you need?).  I wish I could say I forgot I was sick but there were many reminders of "real life" and it made me sad that there were several differences between last year and this year.  I recently realized that I can never get away from this illness, even if I"m planning to, even if I'm participating in some of my normal activities, even if I'm temporarily distracted by the ocean.  I always feel different, both physically and emotionally. Something else to work through.

It was pretty wonderful to be away, have a change of scenery and watch the kids doing what they love.  Although I got tired more quickly than I planned and didn't feel well some of the time, I still played in the water,  built a sandcastle, went swimming and did more walking than I've done in a long time. No wonder I was tired!    

The kids enjoyed the ocean more this year (last year they were either afraid or in Daniel's case, thought it was too cold).  Daniel had no fear and although he did get drenched at one point, he eventually learned the rules. Ryan's favorite things were looking for shells (preferably orange) and rolling in the sand (he still has sand in his ears!). Olivia loved it all -- swimming, the ocean, the sand and our trips in to town.

As with everything these days, the moments seemed more precious and lessons were learned along the way.  I asked Dr. Kaplan where I might be at this time next year and he said it's possible (no promises --) that I'll be receiving treatment once a month. The good news is I  probably won't be receiving the one that makes me feel the worst. I can handle the side effects of the other two, assuming they stay the same. Unfortunately, even when the "yucky" chemo is done, I'll probably still be tired for a year.  But, tired is better than tired AND feeling bad! 

We're enjoying our last weeks of summer. Olivia has been in art camp this week and LOVES it. Soccer is next!

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The good news is my white cell count stayed up which means I successfully gave myself the shots! It was easier than I thought and I was confident I did it right but it was nice to know for sure. I'm comfortable continuing on my own but James  likes to be part of the process so we'll probably share the responsibility.

Dr. Kaplan wanted to wait a little longer to order a new scan but I had some tenderness around my liver last week, so I might get one sooner.  I'll monitor it this week and he'll decide the next time I see him. I jokingly told him I thought I could feel my liver shrinking and he said it's possible I could be feeling "pulls" or scar tissue from the dramatic change in the size of my liver. He's not worried but I agree that it's a good idea to look at if it continues.

I've been sneezing a lot lately -- a minor side effect of one of the treatments. Olivia reminded me of the early days of my illness when she asked, "Does it still hurt when you sneeze"? I guess it's a positive sign that I hardly remember two short months ago when it was painful to sneeze or cough because of all that was going on in my body.  Progress is good --

I tried to keep a positive attitude while James was out of town, but it got harder as the week went on.  It wasn't only about him being away but that didn't help.  I'm a little concerned that I have a LONG way to go and I'm already tired of having difficult days each week. As I was recently reminded (thanks, Gretchen), "When life gets you down, you know what you need to do? Just keep swimming, just keep swimming, swimming, swimming  (Finding Nemo, anyone?)".  I can do this, right?

I was especially testy on Thursday because my one bad day is slowly turning in to two and I don't like it! I've accepted being sick one day but mentally I'm ready to be up and functioning by the second day. Unfortunately my body doesn't cooperate. I want to be playing with the kids, cooking for my family and many other things (not cleaning -- don't worry!). I know many people receive chemotherapy that is more difficult to tolerate and there are many more people with chronic illnesses who feel bad all the time.  I get it. But I'm not very good at accepting it. 

 I REALLY need to stop looking for medical information online at midnight. I get a question in my head that I need answered IMMEDIATELY and even when I try to find a positive outcome,  I often end up somewhere I don't want to be.  Not good.  I told James he needs to put parental controls on our computer for anything pertaining to cancer. Dr. Kaplan also said to stop  because every story is different and it really is too early for me to assume anything (except that at some level I'll always be living with this disease).   He said I can call day or night if I have a question, any question, and while I won't call him at midnight for a non-emergency, I should at least remember that he'll have a better answer if I can wait until the morning.

A little summer news:

We went to the Farmer's Market last weekend and I bought lots of delicious summer fruit.   Yum.  It's hard to have a bad day when it includes cherries, blackberries and nectarines (to name a few -- and yes, I often have them all in one day!).

Olivia picked out a new backpack for 1st grade which was a reminder of how quickly the summer is going. I'll miss her when she's back in school.  It's been fun to watch her play with Daniel and Ryan as they put on puppet shows and plays (directed by Olivia, of course), do art projects and other creative play.   There will probably be an adjustment period when school starts but I know she'll be happy to be back learning with her friends.

We'll be on our way to Cannon Beach in less than two weeks.  We had a wonderful time  last year and I'm pretty sure I won't want to come home  (except that my dear friend Su arrives the day after we get back).

Its always good to have something to look forward to!

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Here are some humorous hair (well, bald) stories.  Perhaps not funny at the time but at least somewhat funny to me now:

**The kids and I were at a friend's house and Ryan said, "Mom, can you take your hair off so they can see your head?"  My answer was, "No, I really can't". Thankfully we were with good friends and although I'm glad my children are comfortable with my new look, this was an etiquette conversation I didn't expect to have!  

**While I was wearing a scarf the other day, Daniel called me "pirate mom".  He asked me to say "ARRRR" like a pirate (which I did) and then asked to wear my wig. I need to post a picture of him.  It was hysterical -- I'm laughing now!

**James' mom rarely comes upstairs so I took my wig off one evening while she was here.  She didn't know where the kids were and came upstairs to ask if I knew. We hadn't  talked about my hair loss and I'm not even sure she realized I was wearing a wig so it was an awkward moment. If she didn't know before, she does now!

**When I first had my head shaved I still had quite a few short hairs but now I look like the tormented doll in the original Toy Story.  A few short  hairs sticking up and more of my VERY white head showing.  Pretty. I'm thankful I can be in the house with or without a scarf on and it doesn't faze my family. God Bless them.  

End of hair stories.

I'm still on a learning curve for treatment and non-treatment weeks.  During my first break I felt like super woman -- I had good energy and was positive and happy. I expected to feel the same  way last week so I scheduled something for the kids and I every afternoon (they had vacation bible school in the morning).   I think I overdid it.  I didn't feel rested, had some aches and pains and wasn't in the best mood.  

I don't know if I struggled a bit because there were some "bumps in the road' last week and everything is magnified these days  (nothing medical, just everyday stuff).  Or maybe it was because I haven't had enough sleep in a week.  Or maybe just because.

I also started to get anxious about James being gone this week. I rely on him to be my "rock" and even if we don't talk much during the day,  I know he's there or just a phone call away. Not so easy when he's on the east coast. I'm sure the week will be hard (and the kids are saying they miss him already) but I encouraged him to go and my worry is usually worse than the reality. This will be the first week I'm giving myself a shot -- wish me luck!

I'll let you know how it goes --

My white cell count is back up and as always, Dr. Kaplan is happy with my progress. I asked if I could have been so tired last week because I was anemic (a possible chemo side effect) and he said I'm not and I was likely tired because I did so much. He was actually happy that my week had such a normal feel to it.  I just need to pace myself a little more.   

According to the Blogspot website, if you have a yahoo account or sign up for one, one of your preferences can be to receive an e-mail when I post something new.  It might be just as easy to look when you think about it (I try to post every week, sometimes it takes a bit longer) but thought I'd mention it.

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I know it's hard to keep track of the treatments I receive, how often each one is administered, etc, so here's a summary:


I have treatment 3 weeks in a row (usually on Monday) and then have one week off.


I feel pretty good the first day after treatment (Tuesday) but I feel the effects by Wednesday and chances are you won't hear from me via e-mail, phone calls or in person that day. I feel better on Thursday but still pretty tired. As an example, I went to the grocery store on a Thursday and ended up coming home without getting what I needed because my legs were tired and I felt light headed. Lesson learned.


About my meds:


Abraxane: This is given every time I have treatment. If you're familiar with chemotherapy for breast cancer, this is the "nonallergic" version of Taxol. It's unusual to get a rash from abraxane but I did, so I probably would have had a significant reaction to Taxol.


Abraxane stops cancer cells from growing and multiplying by changing something inside the cells (and other fast growing cells, like hair -- hence the side effect of hair loss).


The side affects of Abraxane are everything you think of when you hear about chemo: Fatigue, hair loss, nausea (mild for me) and it's probably responsible for my low white cell count (although the Avastin doesn't help). Side effects I've recently noticed are a change in my taste buds (water tastes tinny but I'm living with it) and my fingers and toes feel tingly once in a while. If that gets worse I have a supplement that might help.


Avastin: I receive this every other week. It's considered a bio-therapy, not a chemo therapy. It works like your own immune system but it's made in a lab to specifically attack cancer cells. It cuts off the blood supply to shrink or (if we're lucky) destroy cancer cells. I receive this specifically for my liver because although Abraxane attacks bone and breast tumors pretty well, the liver can be tricky. And it doesn't hurt to have Avastin on board for everything.


Avastin doesn't have many side effects, except for the occasional nose bleed. Some people have blood pressure problems but I'm doing fine.


Zometa: I receive this once a month, the week I don't get Avastin. It strengthens the bone and prevents more bone loss. Even though there are usually only side effects after the first administration, Dr. Kaplan ordered it to be given more slowly because I had such a severe reaction the first time(it usually take 30 minutes but I receive it over 60 minutes). It might not matter and I don't understand why it works that way but I'll stay longer for the peace of mind.


Neulasta/Neupogen: These are the shots I receive. The Neupogen is given 3x a week at home to stimulate the bone marrow to produce new white blood cells and help the weaker blood cells mature. Neulasta does the same thing but it lasts two weeks. You can't have chemo while the neulasta is working so I only get that shot once a month, before my 'break".


Overview:


Week one: Abraxane/Avastin plus 3 neupogen shots given at home during the week


Week two: Abraxane/Zomata plus 3 neupogen shots given at home during the week


Week three: Abraxane/Avastin plus one neulasta shot given in the clinic


Week four: BREAK!!!!!


I'm usually at the clinic 4-5 hours, but it really depends on how long we spend waiting. I get my blood drawn first, those results are sent to the doctor who I see next, then on to the treatment waiting room. I'm usually only in the treatment room 2 hours or so. It's the waiting that takes so long!


Hope that was helpful.

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We had a pretty good week. The kids are adjusting to our summer routine (not that we have much of a routine!) and enjoying the newly arrived sunshine. I think my fatigue increases a bit more with each treatment but I push through it when I need to -- or more importantly when I want to -- playing with the kids, visiting with friends, going shopping.  My mood was more stable last week, although not perfect (is anyone's?).    


Dr. Kaplan increased the dosage of one treatment because I'm tolerating it well. I shouldn't experience more side effects with the higher dose.  He also said my white cell count dropped quite a bit and I'll need to start getting three shots a week (instead of two). The nurse said that's not unusual and some patients need daily shots to keep their white cell count up. We'll see how it goes.  


I asked him about exercise now that I'm feeling better.  He said to take it slow and keep it low impact so I've taken a couple walks (including one through IKEA) and I'll do more when I can. 


I received my first bone strengthener about a month ago (through the port) and had a bad reaction. Even though I was told that only happens the first time, I was nervous when I received it again but I didn't have any side effects last week. I'll receive that treatment once a month to help rebuild/strengthen bone that is being compromised by the tumors.


James said he was watching the clock after I received the bone strengthener and anxiously waited for the 24 hour mark to pass (that's when I started to get uncomfortable last time). I never forget how difficult the last few months have been for him but those moments remind me that he goes through everything right along with me (more about that in a future blog).  He has just started talking about the early days after my diagnosis, which were pretty horrible. We (well, me) chose to wait to tell people but it was more difficult than we thought to struggle with this ourselves. I wanted to be able to say, "This is what I have, this is what the tests have shown, this is what we're doing about it." I didn't want to drag anyone else in to the unknown. As hard as that was I don't know if we'd do it any differently, although many people have said they're sad I didn't think I could talk to them. There's no easy answer, is there?  


One positive thing that has come out of all this (did I say that?) is I've been in touch with old friends more frequently and people I've wanted to get to know better have reached out and started friendships. I've also met wonderful people in "the club you wish you didn't belong to". A friend introduced me to someone who also has breast cancer in her liver.  She has the same kind of tumor so we've had a similar course of treatment.  She's two years post diagnosis and doing great. It's amazing how you instantly feel like friends when you meet someone who has walked in your shoes.    


I also learned of another mom who has breast cancer (a different type -- who knew there were so many?). When her cancer reoccurred she was told she only had 8-10 months but she responded better than expected to the second round of treatment and was recently told she will likely be cancer free for a long, long time. She'll probably need treatment again in the future but her prognosis went from poor to great in a few months! That was a good reminder of what a roller coaster this disease can be.  Even when you get bad news, you never know what's around the corner.  


Many of you know that a local group, "Moms for Life" put on a fundraiser for our family. I was overwhelmed at the hard work put in to the event, the attendance, the donations (monetary and for the silent auction) and the support given to our family. This has become a recurring theme in our lives: How can we thank people enough or describe how much it means to us? And in some instances, how can we thank those we don't even know?


I know the best way to give back is to "pay it forward" and do what I can for others.  At this point I don't think I'm ever going to get out of "pay it forward debt" but at the same time it's not a bad thing to continuously give to others. I'm trying to remind myself that people aren't doing anything they don't want to. They're helping when they can in the ways that are most comfortable for them. I need to make peace with that and return the kindness when and how I'm able to.


I've been told my blog not only helps people understand what our life is like but has also gives insight about friends or relatives who are going through an illness. My initial goal was to keep you informed and in the process I rediscovered that I like writing. It's helping me in many ways but it never occurred to me it would help others. Bonus!

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I frequently get asked how long I'm going to have treatment and my response has been, "We won't know until I have at least one follow up scan, maybe more".   This hasn't made sense to many of you, especially those who know people who had cancer and were given a clear plan.

I asked Dr. Kaplan about my treatment plan again today and he explained it this way: When patients come in with one tumor and have surgery and chemo (for example) there IS a textbook treatment plan. When they walk in to his office like I did with multiple tumors, including in a major organ, he can't use a cookbook approach.  He'll know more after the first scan and even more after the second. And the more scans I get, the better! That will mean the tumors have continued to shrink.  It does sound like I'll have some kind of treatment for a long time, perhaps monthly trips to the clinic and/or oral medications.

He continues to be very positive about my blood results and general progress.  He told me to stop looking at statistics and start listening to my body. I've responded well to treatment from the very beginning and I continue to feel better every week (that darn fatigue gets in the way, though).  And more good news -- the insurance problem with my shots was resolved with many thanks to Dr. Kaplan's nurse. She actually found a way for us to save money! Have I mentioned I love that place?    

My friend Caroline arrived from  Colorado last week. The kids love having her here (so do I) and she's a big help when I'm not feeling well. She also helped James paint the living room (a lovely dusty mauve) and more will be done before she leaves.  Who knew how happy a little paint would make me?

Although last week's treatment and side effects were predictable, I didn't like returning after a week off.   I was on edge, feeling sorry for myself and angry at times.   I felt better when I got out of the house but it was still an emotional week. Some of that could have been the rarely talked about chemo side effect of moodiness, which I've been told may increase along with the fatigue. Good times. Whatever the reason, I want to spend as little time as possible in that emotional space and I'm doing my best to focus on the good that is today.

Another goal is listening to my body and giving in to fatigue when I need to. I don't have a choice after treatment but on my "regular" tired days, I often do too much.  It catches up with me eventually but I feel like a child who doesn't want to miss anything!

As expected, Olivia's perception of my illness increased because she was home more last week.   I read her an age appropriate book from the Swedish hospital lending library which helped but also led to more concerns and questions.

I spent most of Wednesday in bed, although not sleeping all day (this is typical).  I feel drugged and what I call a "special kind of tired" unlike anything I've experienced before. Olivia sat with me several times and did some crafts, writing and read a few books. She seemed comfortable but I worry about what she's thinking.  She enjoys whoever is here (my brother, caroline, claire, our next door neighbor) but says she misses James during the day and sometimes asks why I can't spend time with her. That's one way to make a mother's heart ache! We have some activities planned for her this summer but I'm thinking I should add more. She did have some excitement on Sunday when she lost her first tooth!

I asked Olivia if she wanted to run an errand with me last week and said we could get a treat afterwards. She said she usually would but that day she wanted to stay and play with Claire.  Kids.

The boys are doing well and mostly happy, although we're seeing some new "attitude" which is probably related to age as much as anything else.
 
I enjoy writing and sharing with all of you but I'm sure there will be weeks when there isn't as much to report or anything I'm inspired to write about. If you have questions or topics you'd like me to address, I'm open to suggestions.  You can even suggest I write less because once I get going you might have a long night of reading ahead of you!

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There's not much to report medically. I asked Dr. Kaplan a couple questions and he said my white cell count continues to be good. My brother is visiting and he went to treatment with James and I, which was good for both of us and helped the time go quickly.

The only blip was insurance related -- imagine that. We're generally happy with our medical insurance but there's been a misunderstanding about the shots I get at home. Hopefully the hospital pharmacist will get it resolved. We'll have to make an extra trip to Seattle but we're getting used to that.

I was actually surprised at how much better I felt last week without treatment. It was as close to normal as I've felt in a while. I also realized that the treatments had become a security blanket. I (irrationally) thought I would lose ground if I took a week off. I now see that regaining some strength (and having some fun) helped my system get ready to handle more. Sort of. I thought I was ready to go back Monday because I knew what to expect but I woke up very cranky. It didn't take long to figure out why and turn it around but I'm not looking forward to my "ick" days after experiencing a week without them.

Although it was my decision to have my head shaved, there were still many tears the night before. I cried for the obvious reasons (I didn't have any illusions that it would be a good look for me, although Mary said I have a perfectly shaped head) but also because hair loss is such a visual reminder that I have cancer. Even as I get used to looking in the mirror and adjust to other changes, I still think about my diagnosis with each glance. I'm hoping that decreases over time.

The woman who shaved my head said most people think watching their hair fall out is more traumatic than shaving it and although I wouldn't have guessed that, I agree. And my practical side was ready -- who needs hair falling in their cereal bowl?

Xanax did help me get through that day (so did Mary, who came with me). I save the meds for "special" occasions and haven't taken many but I'm a fan. It does the job without making me loopy or having any noticeable side effects. Just a little bliss when I need it.

Olivia knew my "medicine" was making my hair fall out but when she saw my head for the first time she looked shocked and I wasn't sure if she was going to cry. She said, " Why did the medicine make ALL of your hair fall out? " We talked about it and although she prefers I wear my wig, she's okay seeing me without it. The boys think it's funny and they occasionally ask me to show them my head. They also ask when my hair will be "sticking out" again but don't seem to care if it does or not. It's a gift to have them remind me every day that I'm still the same person, with or without hair.

On to non-hair news: James stayed home from work one day and we had a great date. I recommend everyone take a week day/work day to play once in a while!

I'll end with this thought:

I've noticed that friends will stop themselves as they start complaining and say something like, "I shouldn't be whining with all you're dealing with." YES, you should vent and in fact I want you to. I still understand your frustrations and I still get frustrated about the same things. There might be a topic that we end up laughing about or something unpredictable might make me sad. I want it all. These conversations make me feel normal as much as sitting in the clinic getting chemotherapy reminds me how much my life has changed. Imagine what my day would be like if I was only living with my illness and not sharing in your life. Share! Share! Share!

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We finally have our blog up and running!

Many thanks to those who kept family and friends updated and made sure we had the help we need.  There are many people to thank but a special thanks goes to Mary and Caroline.  I told Dr. Kaplan that everyone who walks in his office needs friends like ours. We couldn’t do it without you.

Thanks also for the wonderful meals we’ve enjoyed, gifts we’ve received and countless cards, phone calls and e-mails. They do make a difference and we are so blessed to have all of you in our lives. What seems like a small gesture means everything when you’ve had your life turned upside down. They make things feel upright for a little while.

And thank you to James’ boss and co-workers. Their kindness and understanding has made it easier to navigate through this time.

On to the good news that most of you already know:  

I am thankful every day that we decided to begin treatment at Swedish Hospital with Dr. Kaplan.  And thankful to Callie, who introduced me to Nancy, who made this possible. I truly believe prayers were answered when I became his patient. His kindness, knowledge and the wonderful staff at Swedish have made a huge difference in our lives.

Since I started treatment, I’ve had less pain and generally feel better. All good signs that the chemo is doing what it’s supposed to.  I still get tired easily and have 1-2 bad days after treatment but it’s much easier to handle without pain. Some of you know that I reacted to the chemo with an “angry” rash that made me wonder if I’d have to stop or change treatment but I was able to continue. It’s still there but less angry (just a little irritated --).

The shots have helped my white blood cell count which is great news.  I plan to take over at some point but for now James continue to give them twice a week.

This is the beginning of my first week without treatment and I’m looking forward to seeing what that feels like.  Unfortunately I’ll see what it feels like without hair.  What started as a slow process is now a continuous shedding and although I’m sad and scared, I know it’s time to cut it all off and figure out what to do next.  I still need to figure out how the women at the hospital make a scarf look so great and although I have hats I love, they don’t fit the same without hair. I also have a wig that I’ve been told is perfect for me (betcha can’t wait to see it) but I haven’t made friends with it yet.  I know I’ll work through this and soon my new look will be second nature (although I’ve been told you never quite get used to looking in the mirror).

The kids are doing well. Daniel and Ryan have spent a lot of time with Claire, our mother’s helper, and enjoy painting, play dough and outside time with her.  Jamie has provided weekly craft lessons which all of the kids love, and last week Layne took the boys miniature golfing and to Chuck E. Cheese. What more could a 4 year old ask for?

Ryan frequently asks me how I feel, if my back hurts and if I ate too much popcorn (long story!).   He’s easily reassured and moves on with his day but he’s always been a sensitive child so I’m not surprised he checks in often and seems most aware of what’s going on.

Daniel likes to give spontaneous hugs and “I love yous” and generally makes me smile with his silly games, voices and ideas.  He often makes my day.

Olivia is sad that Kindergarten is ending soon. She had a great year and we’re so proud of her. Because she’s at school from 9-4, she’s missed a lot of what’s been going on. I’ve talked to her about what’s happening, she knows I get medicine through the port above my clavicle (she’s fascinated that you can feel it) and how the medicine makes me feel.  She knows that daddy takes her more places (like to a birthday party Saturday – thank you James!) but she doesn’t seem to mind.  I’m sure there are more questions and discussions to come.

James or I will check in again next week. Thanks again for EVERYTHING.

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