Friday, March 7, 2014

A Team Effort

I am very independent. I am learning to work within my limited health and it's not easy. BUT the alternative is to give up and that's not an option. Let me be clear- choosing not to do treatment is not giving up. Giving up is merely saying it's over and losing hope.  There's always hope, even when all the odds are stacked against you. I am one person and if my journey makes someone else's journey easier- then it is a success. If I give my children the foundation and tools to deal with the craziness that is life- then I've won a battle.

I've always known that it takes a team to make a family work. Different teams have different game plans- and what works for one team may absolutely NOT work for another- but the key is finding what works. In the past- I handled most of the kids' doctors appointments with support from Phil. Since the newest cancer development, he's taken on a lot of the appointments- either going with me or taking the kids.  It's tough because I feel like I'm being pushed out of the loop and Phil swears he's doing it because my solo job right now is to kill cancer.  He taught the kids one of his famous concepts- it is important to kill something every day, even tiny to maintain proficiency.  This always cracks me up coming from the guy whose call sign is BUDDHA.  And before any activist friends get their robes in a bunch-  sometimes he just has the kids wash their hands- because after all we are killing germs when we do that. Anymore I'm usually told to go sit and kill cancer.  Last week Lily chased a fly around the kitchen for a few minutes then slammed her hand down on the counter. Her eyes got wide- what do I do? I can feel it wiggling. Phil placed his hand on hers and slammed down- you maintain proficiency.  Kiera bounced up the stairs last night after a late rehearsal and declared she meet proficiency today in the garage and that cockroach was huge. I think more proficiency needs to be directed at the weeds in the yard. Yet in our world- cancer will be our enemy and it is important to try and maintain perspective- and proficiency in battle.

Monday was chemo lite. A friend asked last night if Phil goes to every single treatment. Yes. I am lucky enough to be on a once every 3 week schedule and we are hope hope hoping it's working- because it's manageable. I am lucky enough to have my best friend beside me. I am lucky because I don't have to ask him to be there- there is no other place he would rather be. He is taking a more active role in even my treatment plan which is funny because I still know waaaaay more than he does- but he does have a good perspective.   Saturday we sat in the car on the way to soccer and Phil says- I think we should skip the abraxane this time. We are quality of life people and you need a break.

A lot of it is that we are going to Disneyland(I KNOW- major excitement- Lily and Kiera are part of a performance ensemble called PACKids that got accepted to perform and do workshops at the big Mouse House) Phil doesn't want me feeling crappy because that will make everyone feel crappy. So we ponder and worry and know that I am due for scans and my oncologist said a break was fine- that the protocol calls for scans after 6 rounds and evaluation. So we agree- it might be nice for me not to feel entirely exhausted and icky for the big trip.  Even little decisions are hard. There are no right or wrong answers. Most of it is just trying to fight your way through the jungle and do the best you can. I don't want to feel crappy yet I don't want to stop if its keeping the monster at bay. I want a break, but I don't want to give up ground.  The funny thing is- the hemming and hawing is all about one of the 4 meds I get regularly- it just happens to be the one that makes me feel the worst. So we decide to take a break. But that's why we are a team- Phil is looking out for me- for us and we face this stuff together- I couldn't imagine it any other way.

In the same respect I've had women say they would have succumbed to cancer years ago if they had to sit in the chemo bay with their husband. The support job is a tough one and not everyone is cut out for it. We need to know our limits as patients and as supporters. And my wonderful supporter took a trip down to nuclear medicine to schedule my PET scan while I was killing cancer cells in the chemo bay. Its a good thing I take anti anxiety meds before hand because just thinking about scans makes my blood pressure sky rocket.  It is a delicate balance trying to fit the urgency of various appointments into the necessity of our routine. A balance between taking and picking kids up from school and activities and what they are willing to miss for their appointments. It's one of the reasons foundations like Make A Wish are such a godsend- kids in families with medical challenges miss out on a lot. We try so hard to balance- but it is exhausting and there are people who just don't understand. Yet for every person or 5 that doesn't, there is someone who tries to and helps lighten the load- and those are rare beautiful gems.

Some weeks, like this week are entirely centered around maintaining the current- if slightly dysfunctional health of our little family. It may be little and broken, but it ours.  Monday was chemo. We usually get there around 8:30 after dropping the kids off- we were a little early because my neighbor offered to take the girls to school. I check in, get bloodwork and then we usually wait for results- while waiting they access my port and give me some fluids.  It usually takes a couple of hours to infuse the 3 different chemos(this time only 2) and then I get a shot in my arm to keep my bones from crumbling.  And then we stop and bring home soup or salad for lunch and the kids get home from school and the lively chaos ensues. Yet this Monday there was a package waiting for me when we got home!!! It was perfect timing and made for a perfect afternoon of wrangling monkeys. Our TEAM MALLORY shirts arrived!

Tuesday was an appointment with my naturopathic doctor. I highly recommend that anyone facing medical issues go see a naturopath. If only there were true integrated medicine- but that's a post for another time. Somehow I got the appointment wrong. Oh I know how- Phil scheduled an appointment for Lil P - so we could get educated on his new insulin pump for Tuesday. Yet he had an exam on tuesday and I had my appointment and I mistook the time for his appointment as mine even though his appointment got rescheduled for Wednesday. The up side to being early to my naturopath appointment was this....
30 minutes to sit and listen to waves and breath fresh air.  I try to plan for this- it just rarely happens. Because most weeks that I have appointments, I am behind on everything else as well. But this 30 minutes was heaven. 

Wednesday was an appointment in gyn to discuss removal of lady bits. The 30 minutes of bliss Tuesday was overshadowed by the nightmare that is parking at Tripler. I was over 30 minutes early for this appointment and still was late because there was no parking. I'm so glad there are 50 pregnant stork parking spots and zero oncology spots. But I digress.  I don't care to discuss details at this time of the lady bits or the plan for their eviction- because well- the decision is still being made and depends on the PET scan which is next Monday. After this appointment- I bop home, grab a light lunch and the boy child and head back to Spa Tripler for his appointment. There is always a learning curve with new toys and this one will be no different. 
So he will have 2 sites attached to him- one that is connected to a pump of insulin and another that will keep an eye on his blood glucose, called a continuous glucose monitor. We have already experienced the troubles of an active teen and sites being knocked off so- we are going to have to find something that works- we always do. But again- another up side to a busy day of doctory stuff was some quality time with this guy!
And although it sucks sometimes because we miss out on the boring and the fun and a lot of things that just don't fit into our schedule- we find the good in what we have. I am grateful to all the volunteer team members who help us get where we need to be and make this work.  Our team works with what we have and will keep trying to maintain proficiency and win the war- one battle at a time. 

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)