Day 45

Ten days.  I've been slacking.  

It's been a very full ten days - and I finally have a chance to get my head around all we've been working through.   I can't decide whether time is moving faster or slower...it depends on the moment.  Crazy. 

One of my sisters came out to visit last weekend.  She was here to help with kids, help around the house, etc.   What was interesting was that where she helped me the most had nothing to do with the kids or the house.  

I've been working really hard to be at peace with my foot.   I have a hard time looking at it and really accepting this new, mangled piece of my body.   Chris, from the beginning, has been telling me that my foot looks great.  He rubs it to make it feel better and he washed it when the bandages came off.  This is just who my husband is...he sees past things that I tend to get hung up on.   When my sister was here, she looked at my foot, held it, and even painted my toes (clear...but still, painted) - and she didn't blink an eye.  She didn't flinch.  She held my foot and looked at it - and she helped me to see it as she did.  It's still just a foot.  I am now able to touch and exam the amputation point -- and not cry.   She gave me such a gift.  

We flew out to Pittsburgh this past week to meet with Dr. Tarhini at UPMC.   He and another colleague at UPMC have been the co-authors to many studies around interferon.   From what we've been told, he is one that is on the leading edge around melanoma.    The visit started out a bit rocky...not being helped by the fact that I tend to dread and expect the worst from any visit with an oncologist.   We had an 8am appointment -- and I don't think we actually saw the doctor until after 9.   Then, a nurse came in and asked us what we were hoping to get from this visit.   Chris about walked out.   This guy has been on the phone non-stop and has been sharing from the get-go what we were hoping to achieve.   We just kept looking at each other like "we jumped on a plane for this??".  Yikes.   But then, we met the doctor.   For the first time, someone gave us very direct, practical information about what we were facing -- and it was delivered in a way that actually gave us hope.  Hope that we could get through the treatment and hope that it would work for us. He used the word "cure" -- twice.  We recognize that a cure might be a stretch, as my risk will always be there -- but it is a word that hold hope.  For the first time, at a doctors office, Chris teared up.  We haven't been offered a lot of hope along this journey.    We finally got the clarity that we were looking for.   He also highly recommended our oncologist that we were tentatively planning on working with at home.   We have been getting positive feedback about our doctor -- but this finally sealed the deal for us.   His nurse also came in and gave us more practical, usable information about how to get through the treatment.  Basic stuff -- like, do your shots at night so you can sleep through the worst of it.  I like information that I can use. 

We got home and the next day, met with Dr. Amatruda - our local oncologist.   We went in with our minds made up to follow the high dose / 1 year regime with Interferon.   Interestingly, Dr. A initially tried to push us back towards the PEG regime.   I finally realized, which I should have done sooner, that every doctor is going to have different a philosophy - and different approach.   There is no clear if you have x then do y with melanoma...although Interferon is the closest.   That said, after talking more about the toxicity and challenges of high dose, he was supportive of our plan - and ready to get things rolling.   I will start treatment on the 7th.  I really wanted one last full week for Chris and I to have just our family at home, time to focus on our girls, time to see some friends, time to get a little bit stronger.   One last week of something that felt close to normal.   

One of the toxicity challenges with Interferon is depression -- especially the first four weeks on the high dose IVs.  So, I've started on Zoloft to pre-empt the depression.  Chris is in charge of letting the doctor know if I need my dose upped.  I think it is a really low dose.  I feel about the same...and it certainly didn't keep me from bursting into tears at my OB-GYN appointment this week.  

We have gone through a ton of information over the last 45 days.  We feel educated on what we are dealing with, educated on what our options are, educated on how to move forward.  I am grateful for all of the friends and family that have been connecting us to the right people to talk to.   It is amazing to discover all of the small, yet powerful, connections that our friends and family have -- and how quickly and easily they have offered up any information or connection that might help us get to the next person that can give us some answers.  I am in awe of what they have helped us to achieve.   We are truly blessed.  

Day 35

I've always been big on managing expectations.  It could be from years of working in a big corporate culture - and managing expectations can be a career builder or ender...or it could be just how I'm wired.   It's probably how I'm wired - as I'm more frustrated than I should be with doctors that aren't managing my expectations.   If I know, I can deal with it.   If I get surprised -- it really throws me for a loop.  

Back when we planned this amputation, I was told I'd be up and walking in a couple of weeks -- and it would just be an insert in my shoe and I'd be 'good to go'.   Well...I'm walking in about four weeks.  I'll take it.  I'm thankful to be up and moving.   But, as I learned today, it is a bit more than 'just an insert in my shoe' -- and no one was clear on what that shoe would be.  Okay...I'm realizing that I'm focusing on the wrong things here...but, my single pair of shoes, for the next uncertain amount of months...is awful.  Awful.  I was dealing with saying goodbye to my shoes.  My really nice shoes.  Really nice.  I spent more money than I should have, nice.  I was okay with it.  Until today...when I looked at the big, black, clunky, men's shoes that I have to wear for the undefined future.   I'm still glad that the toe is gone...but I'm not happy about the shoes.   I shall be living in very long, black pants for the same undefined future.  If you can't get rid of them, hide them as best you can. 

Chris climbed a mountain today -- he got us into University of Pittsburgh.   Today has been a scramble to lock down flights, and figure out coverage for the girls.   I'm trying not to get my hopes up that this will be the answer to what we are looking for....but, I am hopeful.  It becomes overwhelming.    

I heard from a friend of a friend that has hit her five-year cancer-free mark.  I will focus on this kind of hope.  What rallied me was her focus on remaining positive and eating clean.   Two things that I can do.  I pray that I have similar success that she has shown to date.   

Today, I am grateful for my in-laws.  They are here.  They offer Chris a different kind of support that I am thankful that he has right now.  I can tell that he is exhausted.   My mother in law is the perfect mix of empathy and 'stay tough' love -- she is wonderful.  She has been riding shot-gun with me as I get comfortable driving again.  She plays with the girls.  She made soup.  My mom made soup.  I love that our moms make us soup.  The ultimate comfort food.  Our parents have never stopped parenting -- and when we need them most, they are there.  I pray that we are able to do the same for our girls when they are grown.  

Day 33

Made it to church today, for the first time in a couple of months.   Church is always a bit of an emotional journey for me, even on the best of days.   The music and the connection of the community always seems to resonate with me and help me to feel a sense of purpose again.   Today's message was about finding your humanity in times of weakness -- and finding the blessings in your tears and pain.  Yep.  Let's just say it resonated more than usual today.  

When I quit my job, I had this vision of being 'Super Mom' -- volunteering at school, getting more involved in church, orchestrating play dates where all the kids would always want to come to our house, cooking everything from scratch, doing it ALL, never needing to ask for help.   Instead, I find myself in a position of needing to ask for help, of realizing that not only can I NOT do it all -- but there are many things that used to be easy, that are now difficult.  That it will take a community of friends and family to help raise and protect and care for not only my children, but Chris and me.   Keeping our fears and needs private and only showing the "we can do it all" side does not actually make us strong.  I'm finding that it takes more courage and strength to say that I need help.   It's hard and it's uncomfortable.....but I'm working really hard to find my way.  

Mom met with Pastor Doug this past week.  Another piece of asking for help.  Completely out of my comfort zone.  My spirituality has always been very internal - very private.   Asking for help in prayer, praying with someone.  Not comfortable....and so very needed right now.   I'll be calling Pastor Doug this week and will meet with him.   So -- as we heard this morning, there are blessings in the pain, gifts in the vulnerability, courage when you are in need.   

In other news, M lost her first tooth Friday night.  A lot of excitement in writing a note to the toothfairy -- and then actually getting the tooth out.  I'm not convinced that the tooth was ready to go...but out it came.   I love these moments.  I am grateful for them.   This is what life is about.  The belief in the toothfairy and hoping for a little bit of pixie dust along with some shiny quarters.   Sisters plotting together to make it all happen.  This is where I find joy.  

Day 30

I truly believe that I am on a journey.... a spiritual one, an emotional one, a health one, and a journey of finding a simpler way to live.  Frankly, as I was prepping to quit my job -- these were all things that I wanted to achieve: more time to focus on my family, my faith, my health.  I would have preferred not to go about it hand in hand with battling cancer...but, perhaps, it is through this battle that I will discover a more focused way to live.  Live being the operative word.  

The stitches came out today.   "You'll only feel a pull".  Yep -- guess who was not appropriately managing my expectations again??  I nearly ripped a whole in Chris' arm.  Ouch.   I'll get fitted for my prosthetic next week and can start figuring out what shoes I can wear.   My thrill of the day was returning the knee caddie...my primary mode of operation for over two months.  As much as the girls loved playing with it, they both cheered when they heard it was gone.   I think they are ready for mom to walk too.  

I'm reading cookbooks that explore vegetarian, vegan and cancer-fighting.  I'm intrigued and a little excited.   A new adventure.  I'm realizing that not only do I need this for myself, but I have an opportunity to guide the girls' tastebuds so that they grow up loving healthy, antioxidant, cancer-fighting foods.   They will be high-risk for cancer...so I need to get them on the health train now.   

Today, I am grateful for our dog, O.   He is a needy little dude, but he has been a comfort, a couch-warmer and a pal.   He has managed to step on my node biopsy incision more times than I can count - but I still love him.  

Day 27

It was a long day on the front line.  In my mind, or maybe it was just my hope, we'd have a meeting with a doctor who would say "I'm in this with you -- I will get you through this".  It hasn't happened yet.  We've gotten more - "hey, I'm happy to treat you if you want...but you can go wherever".   It leaves me feeling that, at least to these doctors, I am not valued.  I'm not worth fighting for and helping...which just pisses me off.   I realize that we are going to have to drive this, every step of the way -- but I KNOW that there are doctors out there that at least demonstrate some sort of partnership.  So far, my dermatologist has been the only voice of caring so far.   So that sucks.  That - and the feedback that the PEG Interferon treatment would actually be for five years, not 18 months as we were told by the last oncologist.   Which guy is right?  

Tonight, I am frustrated.   Frustrated and scared and sad.  I need to get my fighting spirit back -- but it drained out of me today.  I need more time. 

So...because I'm just tapped, I'm just going to focus on what I am grateful for...maybe it'll get me out of this funk. 

I am grateful for my little girls.  On a dark day, they can make me smile.  W walked over and tapped my remaining four toes -- just letting me know that it was all okay.  M snuggled in to do a dot-to-dot and was full of kisses.  M dialed through a catalog that came in the mail and circled everything that she wants.  Clearly she is preparing for winter, she circled four different coats.   W read aloud three chapters from the Little House book that we are working on.   I love the sound of her voice and how she tries to do different voices for different characters.  I'm grateful that they continue to find normalcy despite the swirl that we are managing through.  I pray that they continue to feel like their world is simple.  Normal.  

Day 23

The process of letting people know that you have a disease like cancer is an interesting process.   Do you tell them? Do you sidestep it?   Do you let them hear through others?  It's weird.  Especially if you tend to be a generally private person (as I blog in a public space that anyone can get to...oh how quickly things change).   While letting family know is one thing, the whole process in letting friends, acquaintances, old work connections and don't even get me started about Facebook friends know -- well, it can be awkward.   I have dear friends that I immediately turned to - and they have been a core part of my support structure over the last 23 days.  But, I have other friends that I care about, but haven't talked to in a long time -- and calling them up to say 'hey, I'm dealing with cancer now' seems odd.  When they do hear, however, I feel awful for not calling them right away.   I also had to let our financial advisor know and need to tell my daughters' pediatrician, and Chris told our insurance guy.  You feel like you are dropping this little grenade - and then waiting to see if there is aftermath.  I received an email from a work friend who heard from an agency person that I don't even know.  Seriously?  It's weird.  Again - private person.  So knowing that I've become the subject matter in conversations of people that I don't even know...well, frankly, in the spirit of focusing on what really matters -- I guess it really doesn't matter.   I've hit this point where I'm appreciative of the prayers, the positive thoughts, the good mojo being sent my way...and it seems like quantity isn't a bad thing when it comes to prayers and good mojo.   Frankly, putting it out there and saying (or typing) the words cancer, amputation, and malignant melanoma takes the power out of the words.  I refuse to whisper the word cancer.  It sucks - and I'm comfortable saying that in as loud of voice as possible.  Twenty-three days ago, my life changed in about 15 seconds of a phone call.   It's not going to help me to keep it to myself....so there you go. 

Today, I was supposed to get the stitches out of my foot.  It didn't happen.   I think that my doctor could have managed my expectations a bit better -- and instead of saying I'd be walking a couple of weeks after surgery, he could have said 'a few'.  I'm very literal.   He didn't seem surprised that it wasn't time to take out the stitches -- but I was.   Also, there is something bubbling with my heel.  They think it is plantar faciniitis -- but I'm off to get an MRI to check anyway.  I am quickly understanding how each time I gear up for another scan, the panic starts to bubble.   Is my life going to change again?   I suspect that I will feel this way each and every time.  

The doctor also shared that they had to re-do the radioactive tracer shot into my toe in the operating room.  Both Chris and I were pretty ticked.  Seriously?? I had to go through getting TWO SHOTS into my bad toe, pre-surgery, and they STILL did it again?   I'm done with Park Nicollet.  We know it isn't the place for our long term oncology journey -- and this last little tidbit left me flabbergasted at how casually this shot was treated.   

Leaving all of that behind and focusing on what I am grateful for (clearly, not the radioactive shot guy) -- I am grateful for my friend, Heidi.  She is an amazing care giver.   She not only goes beyond the call of duty to take care of her friends - and I am grateful that I am one of them.   She has brought food, orchestrated meal train and now has orchestrated house cleaning for us.   As Chris said last night -- "there are so many people that want to help and do good things...they just need a General to get them organized.  Heidi is a General".  He is so right.   But more than that, Heidi is an empathetic, giving, funny, amazing woman.   She is also just an amazing friend.   As my sisters will tell anyone, my history in choosing friends has occasionally been suspect.   I was just saving up for a friend like Heidi. 

Day 21

First day of school.  Let's just be honest -- we were ALL ready for school to start.   I have guilt about the summer that my girls had versus the one that we had planned.   However, I'm trying to recognize that it was all beyond my scope of control and feeling guilty is not a worthwhile way to spend my time.   The girls are tired, their summer was wonky, and I know they sense the stress in the house.  I pray that it gets better.  

In one of my cancer books, they write about the importance of gratitude and the role that it can play in staying healthy, surviving.  So - as a part of this journaling process, I'm going to write about things for which I am grateful.  

Today...actually, every day, I am grateful for my family and the roles that they are all taking on throughout this battle.  My mom and dad -- they are taking care of me, taking care of my girls, aiding my husband.   They are keeping our family in full operation as Chris and I sway back and forth between being engaged in family and being engaged in cancer.  They are cheering me on and joining my husband in ganging up on me when I would rather curl up in a ball and be sad.   It's a good ganging up.  I'm grateful for it.  My sisters and their husbands -- they are digging into research, getting their arms around my diagnosis and playing it back in a way that I can understand.  They talk me off the ledge when I am wanting to focus on "the numbers".  They call and make me laugh.   I am grateful that they are my sisters and that they are always in my corner.  I am grateful that they married men that are so engaged and care about how to get us through this battle.  My little girls - they are my gifts from God.  Even when they are tired and grumpy, as demonstrated by Miss M today, I am grateful for how they wake up each day, full of determination, spirit and joy.  Finally, I am grateful for my husband.  He pushes and prods and holds my hand.  He won't ever give up.  Period.  I'm grateful that he teases me as I crutch up the stairs, with our ten year old dog lapping me.   I'm grateful for his patience, and frankly, his lack of patience.   It works.  I may not be grateful of it in the moment -- but I can look back and see where the pushiness has paid off. I know that it will take a village to get me to the other side of this -- and I'm grateful for the one that is coming to life around me.