Fear of the Unknown

Right before bed I take a pretty hefty dose of steroids. 

It feels like I have 12 different hamsters on 12 different hampster wheels in my brain. Those little guys are there all day, but just when things are quieting down for the night, I throw a bunch of uppers on the party. (Mental image of hampster doing blow off hooker hampsters comes to mind…. but I digress). 

Left unchecked, these little party animals will pull an all-nighter and spin their wheels about everything from:

• Did I remember to pack my headphones for tomorrow’s hospital stay?
• Am I planning enough of a 1st birthday party for my daughters first birthday next week?
• Did I ruin Bea forever by letting her watch 15 minutes of youtube videos today? 
•  Do we have all the logistics worked out for Bea/dog/cats over the next few days? 
• Et cetera, ad nauseam

After a few hours, my drugged out hampster friends join forces and start in on the big F E A R hampster wheel, and that is where the real trouble begins.

I am afraid. 

I don’t know what to expect during this first inpatient round (3-4 days) of treatment. Methotrexate has been billed a pretty terrible/dangerous drug, that may steralize me, and has some pretty significant toxicity side effects. It will probably be the drug that will push me into the true cancer patient mode (hair loss, vomiting, mouth sours, extreme fatigue). On the other hand, Methotrexate is the best chance I have to attack the tumors in my brain, and avoid radiation. 

I am afraid of the unknown. I’m afraid that it will hurt, I’m afraid that I won’t be strong enough, I’m afraid that it won’t work the way they hope it will. I’m afraid. 

Logically, I know some parts of the process will hurt, but I can handle physical pain. I am strong enough because there is no other option, and I have 100% faith that we are on the right path, and the drugs will work, but logic and fear don’t necessarily cancel each other out. In fact, in the middle of the night, logic seems pretty insignificant.  

best anti-anxiety ever, hanging with Bea!

So, back to those hampsters. My first line of attack is throwing some anti-anxiety pills on the party. That quiets things down for a while, but apparently the steroids are mightier than the anti anxiety pills, so I end up writing random blog posts about hampsters at 5 am and shopping on the Internet. Do you think Amazon delivers to hospital rooms?

In all seriousness, I know most of my fear is because this is all new and unknown. As I get into a routine, 3-4 day hospital admits and the side effects that go with them, will become routine. Routine is the ultimate anxiety/fear diffuser, and I’m looking forward it!

A Day Off

Since my diagnosis I have been praying for grace. The grace to get through this challenge with acceptance and love rather than fear and anger. As I assimilate into this new reality, I feel I could slip into allowing my cancer to define me, and my relationships with family and friends.

My goal is to remain differentiated from my cancer. In the words of a wise mentor, “I care, but not that much.” Yes the cancer is there, and yes I care deeply about what that means in the long and short term for my health, but I am still the same mom, wife, friend and person I was two weeks ago, and today I am going to forget the cancer and focus on those other things.

This morning I am lucky enough to feel almost normal. Yes, I didn’t sleep much (thank you serriods), and there are many little things that are fast becoming routine, such as testing my blood sugar (thanks again steroids), taking pills, and flushing my PICC lines, but all of those things can be completed quickly. I have no doctors appointments, lab work, waiting or scheduling to do. No prepping for my impending hospital admission on Monday – It can all wait until tomorrow. TODAY I AM LETTING IT ALL GO.

Now, the question is, what to do with my vacation day? A family walk in the sunshine? A trip to a new neighborhood to window shop and find a new great lunch spot? The beach? Pick out a Christmas tree, and engineers way of keeping my daughter from pulling it over on herself in the first five minutes it is up? Getting started on some Christmas shopping (not usually my idea of a good time, but does feel like a very pre-cancer thing to do). The possibilities are endless, and I’m looking forward to seeing where the day goes.

Gratitude

Bea’s first art project!

 True gratitude has not always come easily to me. I have always been grateful for the people in my life, and the things I have – but with a small voice in the back of my head reminding me that I worked hard for those things and relationships and that maybe things could be better.

I love our perfect little home in the country, but maybe we need to start looking for something bigger…. With bigger rooms and more storage. Yes, we have wonderful friends and family, but have I really stopped to think about all they do to help and support me? Not really, not in a long time.

This year my health, and all the support and love we have received, has put everything is perspective. For the first time I am grateful with no strings attached. I can be calm and in the moment, and feel true gratitude for all of the beauty, kindness and wonder in my life.

A partial list of wonderful things:

• My beautiful baby daughter and husband who are everything to me
• My friends, family, coworkers, and network of support people I didn’t even know I had.  They have offered every possible kindness and helped to make these last two weeks a little easier for us.
• Financial stability – I’m greatful that we live within our means, and are starting this journey from a financially stable place.
•  Generosity from others. So many have reached out to help in so many wonderful ways! We have received financial donations far exceeding what we expected, and in a very short time. This money will go to help cover the extra medical and unexpected expenses that are bound to occur.
• The support of the wonderful company I work for, Cagwin & Dorward who has been with me every step of the way trying to make this whole process easier. I look forward to being part of the C&D family for many years to come.
• And most importantly, my prognosis is good. There are so many “good” things about the type of cancer I have. The doctors are focused on 100% cure and get on with your life. Thousands and thousands of people fighting cancer today don’t have the luxury of that piece of mind.

Wishing everyone a happy and healthy Thanksgiving!

Hair Matters

When they told me I would loose my hair, and loose it pretty quickly, it hardly made it on my radar.  There have been so many other things to think about and process, to learn and figure out that my hair seemed like a non issue.

As I thought more about loosing my hair, I realized that it isn’t really my hair that I am afraid of loosing.  I’m afraid of the rest of the world seeing me a just a cancer patient.  Being bald will be a visual reminder of everything that my body is going through, and I wont be able to pretend this isn’t happening.  I won’t be able to hide in a crowd,  and be just another person in the grocery store or coffee shop.  I will be Delanie Boss, cancer patient, and that scares me.

As soon as we put the word out on Facebook about my diagnosis, my long-time hair stylist and friend Nicole Hitchcock, from the amazing NH2 Salon in Novato, reached out to offer help with hair care.  Nicole and her salon co-owner Nina Husan, started a non-profit called Hairdressers with Heart to support women through their hair loss and regrowth.  Hairdressers with Heart highlights Style Heroes that choose to share the gift of free hairdressing with cancer patients across the nation.

Nicole was amazing.  She talked to me about my diagnosis and we caught up on each others lives, moving seamlessly between cancer and kids, family and jobs in the way only great hair stylists can.  She helped me pick out a new short look (that I love and will be sad to see go), and most importantly made the the process fun and feel like a treat.  I felt pampered and lucky instead of scared and alone, and that is a wonderful gift!

Please Remain Seated

Today is my second day of out patient chemo.  It is a lot like being on an airplane actually.  There is a decent amount of background noise, people coming and going in the halls, medical beeping noises, inconsistent WiFi, canned fruit juice, crackers, and nurses coming to check on you regularly – and getting up to go to the bathroom is a major hassle.

Just like being on a airplane, so far I feel like I have either brought too much stuff, not enough stuff, or the stuff I really want I can’t reach or can’t find, but I imagine that soon I will settle into a routine and know exactly how to make my 5 hour chemo flight as comfortable as possible.

Today, I received a first class “private room” which I must admit is much nicer than flying coach with the rest of the chemo folks.

Bea for gratuitous cuteness.

Not my M.O.

Normally I am a very private person.  I (up until about a week ago) was not a big facebooker, and I prefer to keep things more or less under wraps until I have dealt with them myself. Interestingly, that has not been my impulse while navigating through this so far.

We put up a facebook post almost immediately, got started on a fundraising page, and a friend created a Many Helping Hands page within hours.

I may be a changed woman.  It turns out that when you ask for help, people step up, go above and beyond anything we ever imagined to help support us during this time.  We meet and exceeded our fundraising goals in less than a week and have so many friends bringing food, helping with the baby, walking the dog, and keeping me company, that it has almost become a full time job for my husband to manage it all!

I am so grateful and humbled by the outpouring of love and support. I don’t know how, but I will find a way to thank each and every person who has helped.  Every kind thought, care package, donation, meal, dog walk, text message and phone call really does matter, and I am thankful for it.

Good News and Bad News

Saturday morning I was admitted to Kaiser Hospital in San Rafael.  They did an MRI, confirmed that I have 3 lesions in my brain, and immediately began talking treatment options.  They were throwing names, chemicals, treatments, timelines, and all kinds of scary words at us like total brain radiation.  I was in complete shock and probably remember .00001% of what happened that day.  One of my only clear memories is that the emergency room nurse looked a lot like my Uncle John – which I found extremely comforting. By Saturday night I was transferred to Kaiser San Rafael, and had amassed a team of brilliant Doctors creating a plan for my treatment.

Waiting for the MRI

The bad news is I really have fucking cancer.  Still, over a week later, I can’t quite wrap my mind around it.  I have always been extremely healthy, and cancer does not run in my family.  I am not naive enough to think that getting cancer was not out of the question for me, or that I would not be touched by serious illness in my life, but for fucks sake, cancer at 32?  really?!?!

The good news is, this cancer is extremely treatable with a 90-95% cure rate.  Cure – that means get through it and on with your life – forever!

The cancer cells are actually fetal cells. They are a combination of my DNA and my husbands, which apparently makes them easier to target with chemo.  Actually, there is some risk of the chemo breaking down the cancer so fast that my body will have a hard time processing it.  In the words of one of the many doctors I talked to “if you are going to get cancer… this is the one you want.” Ok, I’ll take it – I guess!

The bad news is that the cancer is in my brain.  That scares the shit out of me.  The plan right now is to use a pretty intense chemo drug called methotrexate, which is pretty good at passing through the blood brain barrier (a nifty filtering mechanism of the capillaries that carry blood to the brain and spinal cord tissue, blocking the passage of certain substances such as things that could cause infections, but unfortunately also stops many chemo drugs).  I will receive methotrexate every few week as an inpatient, and through lumbar punctures on the “off weeks.” I never in my life thought “off weeks” and “lumbar punctures” would be something that would go hand in hand – but isn’t life full of surprises?  The goal is, that the methotrexate will give the cancer the old one-two punch and I will be able to skip radiation.

The back up plan is what they call Cyber-Knife radiation.  While that sounds terrifying, it is a very targeted form of radiation allowing the smarty pants doctors in South San Francisco to apply radiation directly to where it is needed, and nowhere else.  There are still risks of side effects, but much less than total brain radiation.

Total brain radiation and surgery are still last ditch options, but I’m not even going to start going there yet.

Friday the 13th

Note I scribbled while getting the news

I am not a superstitious person.  I don’t often see meaning in random events and I have never been one to avoid black cats or throw salt over my shoulder, but Friday November 13, 2015 was not a good day for me.

For a week or so prior I had been, for a lack of a better way to describe it, feeling pregnant – a feeling that was no all that foreign to me considering just a year ago I was anticipating the birth of my beautiful baby daughter. Believing there was no way I could be pregnant, I chalked my symptoms up to exhaustion due to some sleep regression issues my daughter was going through, or fighting off a cold.

On the evening of Sunday the 8th I fainted.  Not being much of a fainting violet, this was enough make an appointment with my doctor for the following day.  My doctor was not overly concerned, but went through the usual questions, ordered blood tests, and as doctors are known to do threw in a pregnancy test for good measure.  I went back to my regular life feeling more or less fine.

Tuesday, I received a positive pregnancy test.  This explained all my symptoms and honestly scared the crap out of me.  My husband and I have an 11 month old daughter and were not sure we wanted to have more kids ever… let alone so soon.  I called and made a prenatal appointment with my OBGYN for Monday 11/16/15, and started processing all the positive and negative feelings that came along with learning that I was becoming a mother of two so very unexpectedly.

On Wednesday I had spicy Thai food for lunch.  I eat spicy food all the time, with no ill effects, but as the afternoon progressed, I felt more and more pain in my abdomen.  Upon arriving home, I immediately threw up and felt better.  I attributed the incident to pregnancy gas pain and/or a minor case of food poisoning, left my husband on baby duty for the night and went to bed.

Thursday afternoon the pain came back.  It was not as severe, but I called the doctors office and they moved my prenatal appointment up to the following day (Friday the 13th) just to be sure everything was ok.

At my appointment the following day, my OBGYN went through the usual prenatal drill, including a sonogram, and was unable to find a fetus.  She was not concerned because we could not even come close to pinpointing conception, so we figured it was just too early to see the baby.  MY OBGYN was slightly concerned that it could be a ectpoic pregnancy, but said based on how I was describing the pain (coming and going) and the fact that I just had a normal pregnancy, made the risk pretty low.  She had me go get more blood drawn to test my HCG levels and requested that I get blood work done again 48 hours later so she could try to determine the fetal age. I went back to work, and got on with my day.

At 5:00 pm, I received a call from my OBGYN.  My HGC levels were off the charts.  She actually thought there was an error with the test, but sent me straight to the hospital for a more detailed sonogram.  She said an ectopic pregnancy was a real possibility. We scrambled to find care for our daughter (thank you mom and dad), and prepared for what we thought was the worst.

Have you ever been in a hospital (not the emergency room) after 5 pm on a Friday?  there is not a doctor to be found.  A very nice sonogram tech started what we all thought was a more or less routine scan, but after over an hour of sonogramming, I started to feel like maybe the worst case I could think of was not in fact the worst thing that could happen.

From there things started to move really quickly.  The on call radiologist reviewed my scans and wanted to do a chest ex-ray, then that got upgraded to a contrast CT scan, and somewhere in there I got a phone call from a on-call doctor who was saying crazy things like tumors, lesions, cancer, fetal cells, etc.  I can hardly remember the horrible hour I had to wait before drinking the contrast fluid and getting scanned.

We left the hospital around 9:00 pm, scared and unsure what we were facing.  Arriving home about a half hour later, an oncologist called to review the results of my scans.  lesions on my kidney, liver and lung, and an MRI scheduled for the next day to check my brain.

I felt both like the whole thing was some kind of big misunderstanding, and like my world was crumbling around me.