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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