Wednesday, August 29, 2012

Bad Words on the Brain

We were up early Monday morning to brave the rush hour traffic to get Lily to her latest round of MRIs and CT scans. The calendar had been marked for almost a month and Lily countered her nerves by asking question after question. Will we have to leave while it's still dark-yes. Will it still be night-no. Then why is it dark- because the sun will just be waking up. How long will it take to get there- an hour. Will there be traffic- probably.  How many times will they poke me- once. How long will I be asleep- a couple of hours. Can we get noodles after- of course. Ok-Ok.

We get out the door and I turn the radio on to the beautiful news that there are 2 stalls and rain. Hopefully we will make it in time. Almost an hour later- we are still 20 minutes out. Mom. Yes Lil? It's 6:29. I know. The calendar said 6:30, we need to be there at 6:30. I know. It's 6:30, we are not there. It's going to be Ok Lil. They always allow a little extra time. But I call to let them know we are running late- just to be nice.

So I am having an MRI and a scan? Yes a CT is of your chest- because your lungs move when you breathe- the CT uses extra energy to take pictures of your lungs faster. The MRI is of your brain and organs and everything else.

So they can see my brain in the MRI?  yep.
Can they see bad words in my brain on the MRI?  me laughing hysterically.
It's not funny. Actually it is, and no, they can't see bad words when you think them.
But I can see the words in my brain- why can't they see them? The MRIs aren't that good.

We finally find our way up to the sedation center and go through the routine paperwork while the nurse slathers on numbing cream in 3 different spots. Although Lily's port helped a lot during chemo, we haven't had a problem with blood draws for years- that is until last month. The oncology nurse whiffed it and after 30 minutes of looking for another vein- I just asked to go to the lab. I had a feeling today was going to be about the same. The nurse- who was our nurse a couple of scans ago and had trouble drawing blood from Lily was on- great. He tried twice to get her IV in- nothing. Ugh. And why doesn't she like the gas? He asks. Well- I don't know- she said she doesn't like the small and it makes her scared- but it must be pretty bad if she chooses to be stuck over doing it. ALlrightythen. He has the anesthesiologist take a look- telling me- if he has trouble- she's a tough stick. I file that away under the nurse who once told me never to let a doc do a blood draw- they are horrible. I'm hoping the anesthesiology part of his doctoring included extra practice with IV's. They have exhausted the numb spots- so he injects her with novocaine. At this point I mention- you know- when she first got her port out- they used to just dart her. Really? That's an idea. So he tries, nothing- at this point my monkey pin cushion is starting to come unglued- she has not shed a tear to this point- but the facade is cracking. I give the anesthesiologist the look- Ok dart it is- you know it hurts a bit right? Yes- but after being stuck four times- we are kind of just being cruel at this point. The telltale sign- when he asks her if she wants to try the gas- she still shakes her little curls as a tear slides out one eye. I would let them stick me all day over this. It sucks. He brings the dart back and talks about numbing the area with a novocaine shot- JUST DO IT I growl- at which point he sticks her and she screams and I hold her and want to smack everyone's heads together.  In a minute she relaxes looks up at me confused and then breaks into a wide grin. Better now? She nods. That hurt huh? Yeah.  We get her down to radiology and I whisper- you can think all the bad words you want. Love you monkey.

The MRI was as long as predicted, which always makes me feel better. Anything longer always means something's up. Always. When she's done with CT- she starts to wake up. She looks at me and smiles. How are you?  You have 3 eyes she tells me. Hmmm, I pull back thinking I'm a little close- Now you have 4 eyes, Can I go home now? No not until I have only 2 eyes. DId they do the MRI? Yep you did great. Oh Ok, is the MRI done? Yep, you did great, I repeat to the goofy kid- but I'll take this over the screaming. 

A pediatric oncologist walks into the center- my heart stops. She smiles and goes to another family. Phew. No news is good news. I look back to Lily. Did they do the MRI she asks- oh goodness. Yes- did you think any bad words? Yeah- I thought the B-word. Did they see it? Nope. Oh Good, because I thought it alot. Me too kiddo, me too.

Saturday, August 11, 2012


This post has been brewing for months. I left May 24th thinking I would chronicle my whirlwind mainland tour and it became evident after a couple weeks that was not in the plan. But as I learn over and over- plans can and do change. I spent 8 weeks- much of which was in a minivan with 4 kids visiting as much as I could. My mother always tells me I need to take the time to take care of me and do things for me. That was what the summer was about. It was part reunion, part history lesson and always worth it and exactly what I needed.  

I've been through dozens of diagnoses of cancer. It's horrible. I can now say it is far more horrible when it's someone you love than when it's yourself.  Hands down, my worst fear is not being here to help my family through the rough times and it is that fear which keeps me fighting. Within days of being diagnosed I had calls with offers to help and polite recommendations to add more spaces on the calendar so more people could help. And the only thing I wanted to do was leave. I am a firm supporter of letting people deal in their own way. I know you honestly never know how you will choose to deal with a pile of goo until it lands in your lap. It doesn't even matter how many piles of goo you've had in your lap- each one has it's own special brand of gooiness. I know people mean well, but the fact is I make a horrible patient. I do not like people taking care of me. I will tolerate it when there is no other choice.  The best option was to continue on with plans. After all- where better to be than with friends and family who had faced all the previous bouts and diagnoses with me? It made sense. Deep down I also knew that by the time I returned, the help would dwindle and people would have moved on. Also something I needed.

In my family, cancer diagnosis doesn't make you special- it makes you part of the club. You get included in tumor comparisons and debates. I am now the reigning champion for most tumors at one time although there was great debate over the blood tumors and metastases and if each cell should be counted or if it counts by organ or by tumor. By that argument I had only 2 tumors- when there were technically 4- and I think I got the sympathy ruling as the newbie. Regardless- I was still a long shot for total tumors and that's a title I'd rather avoid- although the ultimate winner is the one who stays around the longest- so you do what you gotta do- that is a title I will be fighting for.

Before I left, I spoke with the oncologist who was recommending treatment. The standard of care for breast cancer is tumor removal and radiation or chemotherapy to mop up any rogue little tumor cells. What treatment specifically depends on is tumor type, how aggressive it is and whether or not it's spread. I had a very aggressive tumor(or 2- plus one less aggressive and one arm tumor whose aggression is still being debated). It had not spread to lymph nodes, which was really good. But due to the aggressive nature- the standard of care( what treatments are considered best bet for each disease treatment- a way of regulating care) supports radiation and/or chemo. Due to my classification as genetic mutant and propensity towards sprouting tumors- radiation gets pushed to the other side of the table. It can be used- but there's been this pesky problem of more tumors popping up in the area of radiation for genetic mutants such as myself. So the recommendation was chemo, hormonal therapy and targeted therapy. I started doing my research. I made an appointment to see one of the leading specialists in breast cancer and Li Fraumeni Syndrome. Nothing gave me warm fuzzies. It all seemed bad and worse. It was a maze of words like risk and chance and best bet. Best CHANCE at cure. Reduces RISK significantly.  The thought of chemo made me nauseous and prone to fits of anxiety. I don't care about the hair loss- it's temporary- I could also live with feeling like crap for a lengthy period of time- I have grown 4 humans- but I found no piece of research or data that definitively proved to me that the benefits of any of those treatments outweighed, far surpassed or even came close to the risks. The significant risk reduction was less than 20% when I crunched numbers- depending on how you crunched them and what factors you used- it could vary from 16% to 50%- in risk reduction. I won't scoff at 20-50%- we are talking about my life here- or are we? No, risk recurrence refers to disease free recurrence. The number variants you see- can be due to how the recurrence is tabulated- some don't account for metastasis(spreading of the initial tumor to other parts), some don't account for secondary tumors that occur outside the field of treatment- some don't include secondary tumors at all. When you start talking concepts like absolute risk- is when people start getting a little jumpy. -There's no way to tell absolute risk- every body is different- we can't tell why some people get secondary cancers and some don't - we can't tell why some people have heart failure on chemo and others don't- we just can tell if there are predictive signs- but absolute risk starts taking into account when people die or demise from the treatment itself as opposed to the disease. People rarely discuss those numbers- as it is terrifying. That stuff is lumped in the inches deep of paperwork you sign if you choose to do treatments.  It's a best guess scenario- all of it.  Every body is different and everybody faced with this monster deserves the best chance at beating it. I've talked to many long term survivors with this mutation- well the few that there are anywho- the opinions are split on chemo and radiation. All are controversial. What everyone agrees on is that is is a personal choice- you have to do what feels right and what is right for you. The problem is when you know what's right for you goes against the grain and the standard of care.

I watched my dad and brother have horrible side effects from radiation and chemo that in all respects were exclusively palliative- that means aggressive attempts at buying time and comfort. Brain tumors continue to be one of the toughest tumors to treat for several reasons. You can't cut it out without major damage. Not so many things cross the blood-brain barrier effectively and if they do- finding therapeutic concentrations without debilitating side effects is very tough. I watch Lily Kay Monkey have many complications from several chemos- and we live with the after effects of a few. Hair grows back- but not in a way that will replace the hearing she lost. She will never have normal adrenal function. She has higher risk of growing more cancers. But we have her. She is still here. I live with a shining example of why chemotherapy works. I live with the after effects too. Not a huge price to pay- to have her here. But sometimes those after effects are not so easily dealt with. The problem is we don't know how Lily would have done without chemo. The numbers and data show there was a high risk of recurrence. The leading specialist in her cancer told me the protocol was the best chance we had. SO we did it. It was not an easy decision for me. It is a decision I wrestle with every time she gets sick and every time we have scans. But she was a child and there are many who find it criminal to not exhaust all possible treatments in search of a cure.  Then I am reminded of the nights I laid next to her praying for her not to be taken from me quite yet and chemo held that promise. That has always been the promise of chemo. It gives people the hope of potential cure when nothing has been shown to be a definitive cure. SO many choose to face this battle armed with an arsenal of toxic chemicals knowing that it's a battle of killing off the bad cells before all the good ones and tempering collateral damage.  What it comes down to is that people need to fight the disease. A surgeon can take it out- but after that- what else is there to do? How can we be sure it won't come back? Any good doctor will tell you- they have NO idea why some people do well and others don't. Researchers spend a lot of time crunching numbers to try and find a correllation. I have my own theories. Some people find faith, some people meditate- some visualize. One doctor will emphasize balanced diet and exercise as part of treatment and 2 seconds later call nutritional supplements quackery and downright irresponsible.

I decided early on that I did not want chemo, but I committed to doing the research and asking the experts. It wasn't a decision as much as a feeling. I don't know if I would have felt differently if there had been lymph node involvement.  I also know that for several years I have fielded immense amounts of stress. I will never know what exactly caused the cancer to grow and why now- I feel firmly that the stress is a huge contributor. Chemotherapy adds additional stress to the system. Basically you are hosing down an entire yard with weed killer and hoping with all hopes the grass will somehow grow back. The targeted therapies have huge promise. The benefits of chemo without the systemic damage- but they still can take a toll. I am somewhere on the fence with the hormonal treatments. I trust the body. The body is one of the most amazing machines ever created. I have not always taken care of mine as well as I should have. Sometimes we all need a giant kick in the breast or three to get us on the right track. I know that the cancer did not just pop up in the past few months. I know the body is perfectly capable of fighting off cancer of given the right tools. I have one strike against me. Genetically speaking- my body cannot fight tumors like a non mutant. Cancer is a multi step- multi checkpoint failure. I already have one major check point knocked out. I firmly believe that at certain points, adding stressors- like chemo or radiation sometimes can do more damage than good. That is my honest to goodness gut feeling with very little evidence, circumstantial, anecdotal or otherwise. Since this p53 mutation is so rare- there is not a lot of data- and hardly and long term studies to definitively discourage the standard of care. What is known is that people with these mutations have a lot more tumors and a lot more rare tumors pop up and multiple tumors over many years. SO what if the identification and treatment of tumors has gotten so much better that people are finally living to see the collateral damage portion? Right now, I don't have systemic involvement. I do not feel fighting it with a systemic toxin is the appropriate call. Instead I have chosen to incorporate natural cancer fighters and preventions into my diet and lifestyle and to eliminate as many toxins as possible. If you know me- this is not easy. I love food. I don't so much like to exercise. I love sweet tea. But when I stopped to slow down and listen to my body- I realized it was telling me things- I just wasn't listening. Now, I haven't gone off the deep end and I still do endless research. I just stop when I start to get stressed and refocus. I take the proven knowns- not the maybes. But I am putting faith in the fact that I am not done yet. I have many more battles to fight- I have so much yet to accomplish. I will be taking better care of myself and my family- which means letting go of a lot of things. I don't have any definitive answers. I will not say that I won't do treatment down the road- I will say that right now the best treatment for me doesn't involve chemo. And I reserve the right to change or amend plans or have them changed at any time. It doesn't mean I'm not fighting- it just means I'm doing it my way.

Lily Kay Monkey

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