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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