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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