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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