Speed bump ahead….

One marathon and suddenly I think I’m an expert on marathon analogies but I’m  going to use one anyway.

I’ve always disliked the use of war as a way to describe my journey with cancer. It implies that when you die, you lose. You lose your battle or your long fight. You fought bravely but in the end, you failed. You lost. You didn’t do all you need to do and the enemy won.

I’ve decided it’s a marathon where you occasionally hit some walls but in the end you finish. You succeed in overcoming the times that make you want to quit. The hills that threaten to do you in but only slow you down.

For some it’s a half marathon. A shorter journey that is no less difficult to finish. For others it’s the full. A long journey filled with walls to break through and the occasional train.

Along the way, family and friends cheer you on or provide you with energy snacks to give you that boost to keep going. They hug you at the end and tell you “well done” and “you made it”.

My journey has been a long one. It has felt like I’ve been beat up and knocked down. I think I tripped over my feet a few times and have gootten some impressive road rash but I’ve kept going.

This week I hit a speed bump.  Or maybe I’ve stopped at an aid station.

Nexavar has stopped working and I have a new lesion in the “lower left aspect” of my pelvis. The 3 lesions on my liver are now referred to as “several”. Whatever the hell that means.

I’m now awaiting approval for drug #5. It’s called Tasigna and it’s over $8,000/month so insurance will probably be a little slow to approve it. I kind of don’t blame them but in the end, my doctor will convince them there are few other options and none are cheaper. The good news? It’s supposed to be much milder in the side effect department. That’s my silver lining.

That’s also the logic I used to convince my daughters that this was ok. I’m not sure how well I did but I tried. I kept it together and chatted with them about the latest wall we’ve hit. I told them of other people who have had great success on Tasigna. I told them I might start feeling better and will likely have more energy.  I may have even convinced myself.

They’ve been sticking pretty close the last couple of days. Though D1 did spend the evening yesterday with her boyfriend and his sister. I’m ok with that. More than ok because I know that whatever she can’t say to me, she will say to them. She shared a text from them with me Wednesday evening that said they were “sick of her one word answers on her texts and were taking her for frozen yogurt and video games after school”. One word answers means she was struggling. That they stepped in and took over to cheer her up makes me happy.

Today I will stop by the elementary school and talk to D3’s teacher while they’re at lunch and I’ll email D2’s teachers and tell them my status. I’ll ask them not to say anything to the girls but to simply keep an extra eye on them. I’ll email D1’s band director because that is where she finds her peace and he’s the one person who will be with her throughout all of high school.

I’ll email a couple coworkers of SG and ask them to take him to lunch or out for a beer.

I’ll text my parents to say hi and let them know I’m ok.

I’ll call my sister to check on her so that she won’t feel like she’s hovering and checking on me.

I’ll go for a walk to give myself strength to keep going. I’ll get my head clear and my body strong in case my next aid station stop involves a surgeon.

I am hoping this marathon turns into a 100 mile ultra or whatever they’re called.

I’m going to take my time and enjoy the trips over the scenic bridges, along rivers and in the mountain foothills.

This is a race I’m not in a hurry to finish. I don’t want to set a personal record. I want to enjoy the sights and the supporters. I want them to walk with me so that we can give each other strength.

I want them to hug me at the finish line – years from now – and say “good job mom, you did well and we’re proud of you”.


Look Ma! I’m still alive!

Holy crapazoid! Have I really not posted in 4 months? I’d apologize but based on my site stats, nobody was checking in any way. Ha!

I’m not sure why today feels like an update day but it does, so there.

Can I use the fact that my right arm has been in a cast since early November as an excuse for not writing or should I fess up and simply admit I haven’t had an original thought in ages?

I must have news of some sort other than the fact that my charming Elvis Doppelganger hand surgeon decided not to do surgery on my torn scapholunate ligament (say that 3 times fast, I dare ya).  Given that I’d have to go off my life saving drugs to perform a surgery that may or may not decrease my pain and increase my range of motion, I’m good with that decision. And might I add, a surgeon who avoids the operating room unless it’s absolutely necessary is my new favorite kind? I love my Elvis doc!

Oh, I do have news! I walked a full marathon in October and finished it with energy to spare – D1 by my side! We sort of rocked. Granted I was able to go off Nexavar for 4 days while I did it – oncologist approved hiatus – so I had more energy and less foot pain. Always two key components of a successful marathon. At least in my opinion. We had so much fun and I was finally the mom she wanted for a few days! Now that we’re not training and she’s back in full highschool/teenager mode, I miss her!

I have a scan coming up on Tuesday which feels a little huge again. I think my lack of energy and overall general feeling gross lately is mostly due to the fact that I got back from the marathon and sat down. And I’m still sitting. Except when I’m eating. Yeah, that could be it. I’m sure it is but it’s always nice to get that confirmation that all is well every 4 months.

There have been a couple hard deaths on the GIST support site lately. One woman hit especially hard. She was diagnosed when her youngest was 7 days old. The cyst they saw on her ultrasounds turned out to be cancer. She had a rare GIST mutation but was able to stay strong and battle it for 10 years! A couple of weeks ago she simply ran out of treatment options. The good news is she got to spend 10 extra years with her 2 daughters but the bad news, as always, is that 10 years isn’t nearly enough.

When I was first diagnosed, I searched out any other moms I could find that were facing this disease. Her grace and strength was encouraging to me in my quest to find my way as a new cancer patient mom. I will miss reading her updates and her constant encouragement of others on the board. My heart breaks at the pain her family must be going through. Her daughters were about the same age as D2 and D3.

As I approach my 7 year cancerversary next month, I remember what an amazing support all of you were when I told my story on my 5th anniversary and I thank you from the bottom of my heart! I hope to check back in next week with news of another good scan.

Or maybe I’ll be back sooner. A lot feels like it’s changed around here lately but as the girls get older, I’m not sure how much of it really is mine to share. I guess I should make some sort of resolution to keep writing. My stats for last year were pitiful.

Belated Happy New Year to all of you! I’m going to see if I can find a new look for this boring old blog. We are fogged in and grey today and I need some spring!