Friday, June 21, 2013

Life in the Triage Lane: A Lymphomaniac Tale

Last week, the beloved husband was gone. When he's gone- I make feeble attempts at being fun parent instead of boring, rule making, chore staking mom. I try to spend time with the kids in a fun way, for my own sanity. I let the dishes pile up, I get a little behind on laundry and we do something fun. On top of that- we always try to do something crafty, educational or helpful. Our fun event was driving to the other side of the island to go bodyboarding at Bellows. We live by lots of beaches. Beaches and waves- like other geographical locations- have their own personalities. We have a great beginner surf spot right down the road, the North Shore is known for it's epic breaks, while Bellows is known for it's breathtaking views and bodyboarding.

I load the kids in the car, with the associated bags, toys, boards, coolers, towels- for beach and post beach showering- as we were taking dinner to a friend after our fun- that was our helpful event. Their life is complete chaos right now, as not only do they have a 2 year old with a metabolic disorder who needs round the clock nursing care- they are living in the front room. The back rooms are off limits while construction is going on to make room for an accessible shower and bathroom- to make bathing their not so little munchkin a little easier to manage. Her husband- was with mine- off simulating something or other- someplace other than here. I always enjoy our visits, even though they are few and far between with our schedules.  I feel we are kindred spirits- yet it also offers me a healthy appreciation for how less complicated my life is comparatively. It is important to me, for the kids to understand that. No matter how hard life is- there is always someone who is struggling more. Plus partly it is selfish- it feels good to help. I hope to, in any small way I can impart that on my children.

Somewhere during the downpour through the lush H3 , hoping the rain was stuck to this side of the tunnel- I noticed my right index finger was swollen. It is not unusual for the fingers on my right hand to swell, although it's usually the middle and ring fingers that hang on to the puffiness. We went through "training" about lymphedema after my surgery- any time you have lymphnodes removed or damaged- there can be swelling.  The lymph system is like a freeway of vessels and little oval balloons that can capture and flush bad particles- germs, bacteria, cancer cells. It is one of those underappreciated systems- it gets no props until it's gone. We have over 500 lymph nodes throughout our body- so when they removed 6 from my armpit- I pretty much thought the lymphedema panic education sessions were overkill. Phil and I laughed hysterically as the lymph nurse wrapped my arm in no less than 4 layers of varying thickness and compression- overkill. I pay attention to swelling and spend a lot of time elevating and massaging the fluid back to another route where maybe another highway might pick it up and send it away- I rarely use my compression glove. I avoid injury- but let's face it- I'm a busy right handed klutz- I've burned, banged and had monkeys hang from my arm. Heck I have a huge scar for the dang lymph to navigate around- I assume that's usually the problem and Phil and I have perfected a massage route to get the swelling back around it. So on our drive- I start trying to massage the fluid out of  my finger and notice that the knuckle hurts. I don't see anything and the swelling causes the joints to ache anyway- plus the rain- I continue massaging without much benefit.

We get to the beach and although it's not raining, I can see some threatening clouds way off on the horizon. Now- I generally laugh when people run off the beach when it rains- if you are there to swim- it's just a bonus water feature. But- it can kick up some waves and I am flying solo with the kids- I don't want to have to go all Baywatch today. I strap Bella in a life jacket and the 5 of us jump out into the waves. They are pretty good size and Bella seems to take off on the bodyboard like nothing. Phillip is fabulous and helps her make her way back out to catch more and they race in. Kiera catches a few and hands the board over to Lily in exchange for goggles- she's checking out the sealife. I prefer not to know- I respect it's their home. Lily is a fairly fearful ocean-goer. I get that- but at any given point- I have a huge monkey clinging to me while being lambasted with chest high waves or trying to give her a shove so she might catch a wave. The ocean senses our lack of comfort with her and they are not easy to come by. I finally just follow which waves Phillip throws Bella into and we have much more success. She catches 2 and we are on our way back out when I see a huge one- we spent a lot of time learning which waves were big enough to jump over and which ones you you just have to duck under and get past. You can try to jump- but then you are forced to go with it. It occurs to me how much this fun activity is like our life. The waves, ebb and flow- triaging which waves can be handled and when you just have to duck and cover. Sometimes you just have to jump into the wave and go where it takes you- sometimes you know it's not the right one and you wait for the next. This is the one for Lily.   I flip her around as we feel the big pull- I give her a shove and she takes off ,I can just see her start to flip when the next wave rolls me. I end up somewhere near her and hear her sputtering while I figure I won't have to use a neti pot for awhile- I just had a full sinus rinse. I start laughing and see all 4 of my kids in various states of drowned rat. Phillip yells something that I'm pretty sure contained a word he's not allowed to use- but Lily is starting to freak out. I know we have to go do another wave or she'll let the fear of the tumble fester- gotta get back up on that proverbial seahorse.  We catch 2 and everyone could use a break- we head to shore for snacks.  As I look out- there is an ominous sheet of raining moving in from the ocean. We decide to try and beat the storm and load the car up and hit the showers. While we are finishing up- the rain hits and throngs of beachgoers are headed our way.
We have a nice dinner with my friend and despite all the times I wonder if I am getting through to my kids- they all spend time helping- walking the dog- reading the baby a story- Phillip even offered to mow the lawn. We finally head home and on the drive back- my hand is aching and now 3 fingers are swollen. It doesn't surprise me- I'll deal with it when we get home.

Friday is a busy day- all of those things I let slide, laundry, dishes, need to be done- Phil will be getting home that evening. I don't have time to elevate or stop for the swelling in my fingers- so I retrieve the smallest of the 4 layers of the wrapping technique and wrap it up. I go about cleaning and laundering and the day passes. When I unwrap my hand- I have a nice ace bandage checkered pattern down my finger- it seems a little red- but it was wrapped pretty good. Mostly I'm excited Phil is going to be home.

Saturday we wake up and my finger is more sore. It feels like a splinter or something is in there and it's still red and puffy. Phil asks if I was stung by a jellyfish. I don't think so- plus it was sore before the beach. Maybe a piece of coral? As he learned surfing- even a tiny piece of coral can lead to lots of pain and swelling. I decide maybe this is a possibility and grab a lancet and try to surgically assess the issue. There is a bunch of clear fluid- but nothing- not relief. I clean it and slather antibiotic on and wrap it back up. By evening it aches and I notice there are more red spots on my finger and few small pink patches on my arm. We are upgrading to rash watch. My arm starts to ache. I don't like the patches and I don't like the creepy way it seems to be moving up my arm. Mostly I'm worried it's gonna creep it's way to the land of lack of lymphnodes and that doesn't seem good. I did like instructed- elevated- wrapped- although not in michelin man style- I was taking precautions since once lymphedema starts- it generally can't be reversed. Phil and I decide if there is no improvement on Sunday- I will go in to the dreaded doctor. Seeing as Sunday was Father's Day- I was pretty much not going to go in. But I felt pretty crappy. My stomach didn't feel right and I had a slight headache. I decided if Monday there was no improvement- I would go in. See a pattern?  That's generally what happens.

On Monday, I started the routine of transporting the kids to their various activities and got home for a few minutes rest before heading back out. I stopped in to see my neighbor, who looks at my arm- shakes her head and demands that I call the doctor now. Ok, I say and go home. I wanted to get a quick workout in , but decide to call and make an appointment. The earliest they could see me was wednesday- maybe it would be gone by then. My neighbor knocks on the door and is greatly displeased that I am not seen urgently- I refuse to go to the ER. She says she is picking up the kids- I need to go get it looked at. She's decided I have thrombosis. I know it's not a rash because it hurts and there has not been any itching. I head to the acute care clinic.

By the time I get there and show the triage nurse my creepy rash- It has worked it's way up to darn near the lymph lacking section. Crap.  On my intake I put that I had lymphnodes removed and was worried about lymphedema. I was pretty sure that would get me a fast track through triage.  She looks at my arm and makes that puzzled face- did you have a mastectomy? She asks. Yes, last year. And they took Lymph nodes? Yeah- only 6 though. And now I have a healthier appreciation for the lyphomaniac highway. A normal little something or other has now become an arm long problem. You are awfully young to have breast cancer? Yeah, we have a family cancer syndrome. Oh, like that Angelina? Sort of- except she only has to worry about breasts and ovaries- we have to worry about brain, breast, every organ, muscles and all bones. Wow, my first husband died of a brain tumor when he was 36. It was very hard. I nod, my brother and dad both died from brain tumors, it's a horrible way to go. We commiserate.  She finished all the relevant questions and tells me to hang tight- she'll get me right back. I don't know if it's because I'm a bonafide triage or if I unwittingly punched the cancer card. I watch the tv in the waiting room from my seat. It is explaining how triage works.

Triage was a concept initiated during the Napoleonic wars- when tough decisions had to be made regarding life, limb, and resources- it means to sort or select. The French term became an American one during WWI. There were not enough resources for all the people that could be saved- much less for the ones who weren't going to make it. Nowadays, emergency rooms and mass casualty situations use triage. The acute care clinic- although not an emergency facility- adopts the system. It makes sense and makes sure the most severe cases are seen first. An hour could make a difference between life and death for a potential heart attack but not so much for an ear infection.  I sat thinking about it and thought how I felt like I was living in a state of Triage. Most people call it prioritizing- but with the medical elements of our day to day functioning- I am going to call it Triage from here on out. I feel like there is only time for the shark closest to the boat- that I am treading water- waiting for the next shark. I think this is a common problem when you have a chronic condition, disease or family cancer syndrome. You are constantly trying to decide what issue is life or limb and what can be neglected. Kids schoolwork gets triaged for medical care. Mom's mental health care gets triaged to the waiting room because the physical care is more urgent. I didn't have much more time to ponder my life in Triage, because I was in fact on the fast track.

The doc came right in- took a look, made a puzzled face, commented on my low grade not-quite fever(hadn't noticed that) and decides a hearty antibiotic course is called for. I feel deflated. Of course I didn't want to hear my arm needed to be amputated- but I feel like the course of antibiotics is the easy box to check. Yet- it occurs to me-  I rush to wonder what oncologic problem might be presenting before ruling out a bacterial one. I should know within a day whether or not it's bacterial. Especially since the orders are for a shot in addition to a 10 day course. I guess it was pretty serious after all. I googled cellulitis. Huh, what do you know? That's what it looked and acted like. A little bit of bacteria where there is a lack of lymph nodes is like taking down one lane of a major highway- things still work- but there is a big jam. Unfortunately- my treating the lymphedema- probably exacerbated the situations effectively limiting the lymph into my hand to carry away the bad bacteria- and pushing bad bacteria down my arm. I'm pretty sure this shiz was not covered in the how to wrap your arm like a michelin man sessions. This is probably considered advanced lymphucation. I know this would fall under the category of- do not injure the lymph node challenged hand or arm- advice that was given. It makes me wonder how so many women function without any lymph nodes due to cancer or radiation treatment. But as with anything in life- we learn from experiences- and this yet one of hopefully many journeys down the lymphtastic freeway. Have you thanked your lymphatic system lately?

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Lily Kay Monkey

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