Wednesday, January 30, 2013

Every 2-3 months Lily and Phillip go for their routine endocrinology check ups. They are long afternoons- usually 3 hours plus traffic in a small room discussing uncomfortable topics like puberty- bowel movements-poring over blood glucose numbers and carb intakes. There is a physical exam for each child and review of bloodwork. Since Phillip is 13- he belongs to the adolescent clinic and Lily belongs to the Pediatric part of the clinic. Yet endocrinology encompasses both. We schedule the appointments together to cut down on the commuting- but I have to check in the kids in the different clinics. I send Phillip to check himself in- and then after vitals- Lily and I walk over to that waiting room since there are far less rugrats, chaos and germs. Sure we might catch a stare or a glare from some angsty teen who wants to be there as much as we do- but it's better than strep or the flu.

I sent all of Phillip's blood glucose levels and insulin doses and general paperwork to his endocrinologist on Monday, hoping, vainly to cut down on the length of the visit. It didn't work out. You know in the first few minutes when you start discussing bloodwork and the word "concerning" comes up that you are stuck. It's not Phillip's bloodwork- although we have been struggling to keep his sugars in range- this is fairly normal for a teen. Lily's hormones are elevated. Not the "you need more or less medicine" kind of hormones- the adrenal tumor kind of hormones. I know I should feel lucky. When I researched this damn tumor- I knew the prognosis was poor. I know it comes back.  That doesn't mean I haven't spent the past 4.5 years hoping it wouldn't. So we have an MRI- which they don't expect to see too much on- because she just had a CT in November and it didn't show any signs of tumor.  But we know they come back- so we have to see if we can find it because her bloodwork says something is going on. SO as I am processing this and the knowledge that if the MRI doesn't show anything(which normally I hope and pray for) then she gets and automatic ticket to a PET scan which is like 500+ times the radiation of an xray- which for your average non mutant is a pretty little blip but for us- it's the potential to cause a lot more cellular damage- with the hopes that you irradiate your child for nothing- to get an all clear- which means wither more tests or rinse and repeat in a couple months. Best case scenario- you catch it early enough and it's resectable.

On top of that, Phillip has a lump that we are investigating.  He is old enough to not want the world in on his bizness- so I will respect that. That involved an urgent ultrasound tacked on to today's visit. Yet in radiology- no siblings- under any circumstances are allowed in the room and I have Lily. SO we are mandated to wait in the waiting room while the 13 year old is checked out. The radiologist  knows all my kids because we made history when 4 of them were being ultrasounded(yeah it's a word) at the same time. Phil and I bounced between rooms like jumping beans- zone coverage. It was amusing in the ironic- hope they don't find anything kind of way. Yet today- in an after hours urgent ultrasound- I get the flipping tech who doesn't know us and won't let us in. Mind you Lily was just ultrasounded 2.5 weeks ago- so she know whas up. Never mind- wouldn't be an issue if they would have ultrasounded the right part. Well they got the right part- they just missed the right part of the right part. So the radiologist tells me everything looks fine- sometimes it can happen- yada yada- I breathe a momentary sigh of relief. We walk out- I ask Phillip if he's he said- yeah but they spent a lot of time on the wrong part. I assumed they were comparing sides- no- they were on the wrong side of the right side. Oh dear the sigh of relief now feels like my energy being forcefully sucked from me. So our endo meets us- we deliver the news- she seems befuddled as well and says she'll check on the full report. 30 minutes later- I have yet to exit the Tripler parking lot(we call it the Tripler 500) where hundreds of cars exit ONE road. ONE ROAD. EVERY Flipping day - no wonder our endo works late- sitting there for an hour- on top of the hill- watching the traffic on the highway build while again processing the potential mortality of 2 of your kids is a little maddening.  They indeed did not examine with thoroughness the area of the lump and can we come back Friday so all docs can be present and put this to rest. Sure- I guess that's better than not putting it to rest- but in light of all the other crap we have to deal with- the urgency of this is feeling a little onminous- nothing things get tabled- or scheduled through schedulers which takes WEEKS! A friend recently was lamenting to me how difficult it was to schedule her daughter's MRI. What's that like? My new official title may be MRI/CT/Ultrasound waiting room attendant. BTW the toilet paper is low in the CT/Ultrasound waiting room powder room.

And so yes- we have also maintained our record of shit happening while Phil is TDY. I would have rathered the toilet explode- the car implode or a wall to fall down or something.  Unfortunately he knows me well and I can't lie to him so when he asks how the appointment went and I say I'd rather not discuss it until he's home- he asks- is it kinda bad or really bad? I say standard bad. Because this is our normal now and it sucks. The only alternative is depressing so we fight on. I will continue to hope that any one of these things turns out to be nothing-or at least something manageable. And I will hope my husband makes it home this weekend so we can face this next round of tests together- or at least he can hug me at the end of the day so something can feel right in this world. 

***UPDATE*** Phillip's lump is just a cyst. I immediately called my newest LFS friend in hilarity at inappropriate times to share the good news. In our world- as far as lumps and bumps go- you ignore a cyst and move on.  She also had good news that their most recent culture came back with no bacteria- but there seems to be a fungus. We truly have a pair of fun guys.... ba dum dum. Lily's scans have not been scheduled due to standard inefficiency but being familiar with the system and knowing a nurse or two around the block- we probably are looking at Thursday scans. Lots of non cancerous- non metastatic thoughts are welcome.

Sunday, January 20, 2013

Support Groupie

As a young adult- I didn't understand the support group dynamic. I was a fairly introspective person and couldn't quite relate to how sometimes people just need people to understand. Despite losing my dad and brother at a young age- I still viewed life as something with endless possibilites and a rainbow at the end. I usually butted heads with my mother who at the time to me- seemed like a glass half empty kind of person. I had my own glass and was running around trying to fill it. It takes a lot of years and a lot of experience to realize that sometimes it is not possible to keep a full glass. Sometimes you get to a point where you realize that you don't even want a full glass- you just want to maintain what you have when the world around you seems to be dying to take what's left of your glass with them.  Sometimes one person's full is another person's half is another person's overflowing. Sometimes it depends on what's in your cup- who wants a full cup of crap anyhow?

Relationships change dramatically after cancer. I have no idea if it is due to the changes cancer requires or the inherent nature of relationships.  A friend of mine recently recommended the TV Show GO ON with Matthew Perry. I saw the previews but was hesitant to watch a show about a man who just lost his wife. My friend insisted she hadn't laughed that hard in a long time- so I gave it a gamble and spent the better part of a morning catching up on all the episodes. I laughed- sometimes until I cried and then I felt better. To me that is what friendships are about- helping someone with a few drops of sunshine along the way. Yet ironically- when you face with cancer- many people have no idea what to say- or they don't like the feelings your having a life threatening illness produces in them- so they stop talking with you. I remember once after my dad died talking with my mom about visiting with family and friends. She had pulled away from our biggest support group and I didn't understand why. She simply told me that sometimes it was too hard and too exhausting to be the one to always make the effort. People don't want to hear you aren't OK- so they stop asking and at some point- it's too much work to pretend you are OK- so you stop. And the calls become fewer and you find yourself making new friends. I thought that was craziness- until I had four kids- 2 with medical issues and then dealing with my own cancers on top of it.

My view of support groups has also changed. In this era of social networking- it has been said and is true- that although we are more connected than ever - our relationships have deteriorated. Social networks have given support groups a new platform. I am part of groups for Li Fraumeni Syndrome and Pediatric Adrenal Insufficiency that help me day to day. These groups really work for me because these conditions are so rare with rules for living that even docs just don't understand. These groups cover issues that standard of care can't touch- issues like how to live with life threatening illness. Although they are filled with different personalities- they are filled with people who have something in common are are trying to live their best life despite it. I finally arrived at the point where- it didn't matter so much how much was in my cup- I was there when bits fell out- and I at times exhausted myself trying to fill it back up.  Yet I also found people who could see what was in my cup and how heavy it was. Just having someone who understands and testify that although your cup is heavy- you can carry it. It may not ever get lighter- but it might and I guess that's why we keep carrying it. Sometimes they help you see the beauty of what's in your cup and you realize that you got so preoccupied with carrying the darn thing- you forgot to stop and really appreciate what you had in your cup. It's not about what is in anyone else's cup- everyone needs to fill it with what they want or what they can- it's about appreciating what you have in your cup and remembering why you were trying to fill it up in the first place. Sometimes the only reason to fill it is so you can share with others when they need a few drops of sunshine.

Lily Kay Monkey

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