Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, January 6, 2009

I thought I was sad. . . .

“You're braver than you believe, stronger than you seem and smarter than you think.” - Christopher Robin
I thought I was sad and depressed, but I’m not, it’s worse, I’m melancholy & indifferent.
I don’t know how much I can take anymore. I’d like to have my mind right before my PET scan next week.
So many problems and feelings have just been accumulating for so long that now one big misstep by someone and a few little inconveniences almost have me TKO’d.
I don’t know how much more I can take. I’ve lost count of what round I was on.
I coped with the holidays. I hid the devastation that I could not see my nieces and nephews even though there would never have been a Christmas for them without us. I thought someone would show some respect for what we did and find a way to include me despite my disability, but they didn’t.
That family has made it very clear where I stand with them. I’m not welcome in their pictures or at their holidays.
I think it’s time I just stopped trying to make such an effort.
I’ve been broken physically, emotionally, and financially. I’ve tried to call everyone who might bring me up.
I’ve made plans and had friends over. I’ve spent time with my son. I tried to remember that I’m getting some GREAT party invitations (like to the Premier of Notorious), and that if I stick it out, I can go back to being a Manhattanite.
I tried to talk to my husband who reacted the way he always does, by getting angry at either me, himself, or the situation, and then leaving in a huff. I can never guess which one it will be, and he certainly doesn’t tell me.
All I really wanted was to be held and told everything would be okay. It’d be nice if I could, for once, cry in the safety of someone’s arms, but I just haven’t formulated my life like this. The ones I want to show me this love are the first to reject it.
How did I get myself in this position? I try to be interesting and dynamic within my physical means, but that won’t get you what you want in the end, which is just to have someone lie with you in their arms while you cry. Maybe they could tell you everything was going to be all right or that this really wouldn’t go on forever, or even that it’s okay to cry and let your feelings out.
But at my worst, I always find myself alone.
This doesn’t sound like the hard up, tough me I show, but deep down, I think this is what we are all searching for, someone to love us, hold us, and hear what we have to say without judgment and accept us with love unconditionally.
Who has this anymore? Is this a figment of my imagination? Is this some fairytale phenomena that is seen on TV? Maybe it’s an equation like Einstein’s E=MC2, that makes sense but it will never happen.
Who knows?
I was doing okay dealing with all I’ve lost for a while, as long as everything remained copasetic I could too.
But I knew life couldn’t go on like that forever, I would eventually hit a snag in the road and end up in a place in cancerland that nobody understands.
I knew I’d feel alone and abandoned by my supports at that time. I knew no one would understand.
I really need someone to take care of me. I need someone to pick me up, and I haven’t ever found that person (except of course my sister, who lives far away now).
If I hurt so badly I can’t think, I don’t know where to go. I want to be told what to do and be able to trust the person giving the directions and I want help executing them.
It is so scary to not be able to think and then to have difficulty guiding yourself to receive care.
There is no one I can cry to who understands this. I know I am an adult, and am now, fundamentally in charge of myself in these times, but it’s just so hard and emotionally draining.
I say all this, but the reality is, in between when I decided I needed to go to the hospital and the time I actually had gotten in the car, I received three phone calls from people who knew nothing about what was happening: Heather, Colette, Deb and my aunt carol showed up at my door.
I think they are in tune with me, at least when something extremely problematic is occurring.

I’m NOT lost, I’m on an Adventure”
A conversation with a doctor over the weekend shredded my confidence and the safety I once felt in a medical community.
Now I am questioning everyone and their intentions. I feel so lost.
I don’t think I’ll ever be able to retrieve that innocent naivety I had. I was probably foolish to think that people were actually looking out for me.
It’s my fault. I misbehaved in some way. I must have lost the respect I thought I had, somehow. Nobody has time for my problems, I’ve had too many for too long. They’re no longer interested.
My old NP, her unlucky self, had to call while I was crying over this, but I’m not her job anymore, I’m not her problem. It was silly of me to think that we may have been friends. I’m not a coworker, I’m a patient, I need to know my role and accept it. I need to be okay with the boundaries. I’ve been on the wrong side of treatment for too long now.
It’s okay everyone, I’ve now been effectively put in my place. I’m not allowed on the other side of the treatment table anymore.
I get it.
What happens when I can’t look out for myself anymore? I’ve lost everything.
I can’t remember what to do from minute to minute when I’m in pain so excruciating I want to die.
Never in my battle have I ever wanted to die. I’ve always understood this option was on the table and I was rejecting it.
What happens now? The gate has been opened and all the water has come flooding through, the same way the pain pathways have been opened and my brain has been sending messages to torture me each day. I thought I could deal with anything, but the debilitating pain in my head is too much. I want a solution. I need a solution, and before, I reach the point where I can’t cope anymore.
Where do I go from here? And who is going to help me get there?
Forget about who is going to fix my head, but who is going to fix the emotional pain?
The thoughts and tears have started to overwhelm me. I can deal with the events in the past I have missed, but the ones in the present are always hard.
People tell me “someday you’ll get back to your normal life,” but I’m beginning to be less and less confidant that someday will ever come.
I feel powerless. I feel week. I feel broken. I am so fragile.
I’ve been searching for something, anything, that could possibly make me feel better.
I’ve got nothing.
It’s so hard to see people run by at their fast pace and be left behind. It’s even harder to see this happen for years.
I try not to think of all I’ve lost to this disease. I tried to spin it to do some great work, but not even that is holding me together right now.
I have no degree. I have no respect. I have no recourse if someone wrongs me. I just have to lay back and take one slap across the face after the next, and now, I just can’t take it anymore.
Maybe some facebook time could help? But I don’t know.
Some studies have proven that as we become more technologically savvy and we trend away from face to face interactions though it appears we have many friends we truly have less close relationships and the lack of human contact contributes to a greater incidence of depression.
It was only a matter of time until my bubble burst and I faced this reality.
People do need to be hugged and touched to maintain their connection to the world. I’ve gone almost 100 days refusing any contact with anybody other than my child and husband and it has taken its toll on me. I need some hugs.
I think this period in time is especially hard since I am so close to the 100 day mark, but I don’t feel much different. I’m still experiencing random side effects, I’m still strictly isolated.
I know what’s coming. I’m going to hit the 100 days and everyone will rejoice and assume that everything is over, like a fairy just came along and overnight waved a magic wound and cured all my ailments.
That fairy never has and never will come. What happens at 100 days is that my immune system is safely engrafted and all the disease and issues I’ve experienced become chronic, lifelong side effects.
I may be able to go out in public if it is not too crowded, with my mask and gloves, but I will still have to be incredibly isolated.
Then many will be under the misconception that I am “fine” and life will resume the way it was.
I don’t even remember the way it was. That time was too long ago. I have had cancer since X was two, that life I had is gone. My RN license, that too is gone.
I don’t know exactly what life I’m going back to but it doesn’t matter as long as it’s a happy healthy one, I’ll settle and take that.
NOW, I’m going to settle myself down. I’m going to take a couple deep breaths. I’m going to take each minute as it comes. I’ll call my sister. I’ll take a shower. I’ll watch a funny movie (or the new Pacino/DeNiro flick, that will work too). I’m going to get myself together, and I am going to be just fine.
I think what I’m experiencing is probably common, though I’ve never heard anyone admit it before.
It’s just a bump in the road. It will be gone and hopefully forgotten sometime in the future. I’m just not seeing the world clearly right now.
“If you’re not laughing at life, you’re not getting the joke” -Anonymous


brynn said...

I just have a little to say....You can call me any time and I will come over and laugh or cry with you...whatever you need! Please don't hesitate. :) We are behind you Hil! And by "we" I mean thousands of people. Thank you for being so brave as to share these feelings. I'm saying some BIG prayers for you! :)

Anonymous said...

You're on my mind Hil... I love you.


Anonymous said...

Oh Hillary, my heart breaks for are the bravest, most intelligent, incredibly beautiful (inside and out) woman I have ever had the opportunity to be acquainted with......... I'm sending you hugs!!! As many as you can stand....there are tons of people who love and care for you.......... I won't say hang in there, because you do that. But I will say, please know that more people than you will ever know are praying for and thinking about you every are in my thoughts all the time!!!!

Anonymous said...

I don't know what else to add. It breaks my heart that you are feeling isolated and disconnected. You are so right that the computer world gives us more friends with less real contact, but please remember that we ARE out here pulling for you, praying for you, hoping for your recovery.
As my son always said (in fact, his homemade sign still hangs on his bedroom door and he is grown and gone)...Don't Never Give Up!

Anonymous said...

There isn't much I can say that hasn't already been said ... so let me just add that you are incredibly important to many people ... you are incredibly important to me. If there is something I can do to help ... I will answer the phone ... & I will be there.


PS: I'll send you an Email as well.

Anonymous said...

You truly are an honest woman and for that I admire you! It's certainly not easy going through all that you do, and certainly makes the situation tough when sharing it with others. Just know that several of us are praying for you. I look forward to the day that God heals you! Please let me know if I shouldn't be talking this way. But I rely on my faith 110% and it helps...its actually all I need to get through anything. God is faithful! He has the power to heal and change it all! Keep your eyes and mind focused on Him and He will bring you that loving comfort only our creator can give! He will fill the void! Keep living strong Hil!


Anonymous said...

Seems from the comments we are all speechless. I hear your fear and your reality so clearly in everyword. When all that you do seems wrong and no matter what others in your life do it is not what you need, in part because what you need is out of reach right now. There is no easy road back and it appears that your conversation this weekend with that doctor might be leaving you with greater concern for your future. I would be angry and melancholy as well...I try to find my faith when the world becomes overwhelming. I say try b/c that is the operative word. However I do believe that knowing you are loved regardless of all else is important. Loved in a way that we can barely begin to understand. Love, of course does not mean there is no pain in life, only that in the quiet moments there is a small warmth that eminates from your heart. You are never alone. Deb A

Anonymous said...

Your openness about where you are right now paints such a clear picture... Although you sound so discouraged and tired and doubtful, I can still see the Hillary who is strong and fiesty and irreverent. Despite your not being in a good place right now, you still have and can use your ability to describe where you are at and what you need. That's doing more than a lot of people can do. Please know that I'm thinking of you and sending you energy and enthusiasm and a bunch of other unnamed things I think you could use. Dianne

Anonymous said...

I don't know what else to say, other than many things everyone has already said. You know if you want to call I'll pick up and we can cry together, or laugh or just talk. I hope you feel better, and know that you're almost @ that 100 day mark and I'm sending tons of hugs, and hopefully soon some real ones.

Anonymous said...

Hil - you may be beaten, fragile, and isolated but you are not alone. We're out here pulling for you now, at the 100 day mark and at the 1000 day mark as you continue to deal with what you've been dealt.

Let yourself feel all of these things but always take that deep breath and keep on keepin' on because as Christopher Robin says, you are stronger than you seem.....even to yourself.


Anonymous said...

Hillary, stay strong, be strong and livestrong!! Anyone that can write the way you do, putting your innermost thoughts and feelings into words, needs to know that all of your friends, far and near are thinking of you, praying for you, sending positive thoughts and energy your way 24/7!! As a KSC '75 grad, I loved the picture of you in the KSC jacket. Just remember, you have millions of people and angels pulling for you and trying to keep holding you up during this time.

andyson said...

I'm there with you. Literally and figuratively. Well, you aren't here in Brighton, MA, but you get the point. Isolation, frustration, the lack of knowing what is going to be "normal" from now on. I own it as much as you do. I once thought it would be great to sit at home for a few months, not doing anything, but now my condo has become my own personal hell. I can't give you the pick-me-up that I wish I could, because I need it too. Right now it's sit in place and wait and see. Whether I get better or not, day 100 approaches and I don't even know what it means. Everyone assumes that the mask and gloves go away then and then everything is ok. But we know it's just the first big important day after the transplant. The first mark we hit, not even close to the last.

Keep on doing what you need to do to get by. Right now it's about survival. I'll be there reading and waiting to see how the story ends. And it looks like lots of others will be as well.

- Brian

Anonymous said...

Unfortunately, sometimes we are left with ourselves - but in that aloneness is God, who is there to pick you up when you're down, give you the hugs that many of us are sending, and provide the strength needed to get through the day. I've experienced it - and I know it's there - give yourself to it. There's a saying that I love, and you may have seen it in your internet travels, "If God brings you to it, God will bring you through it." While you may be physically alone, there is a collective out here that is sending you the energy. It's ok to cry, it's ok to get angry - but there's a lot of positive energy out there for you to tap into. Don't forget that - we're here. Deb

Anonymous said...

Hi Hillary,

I don't know you that well so it's hard to know what to say but I'd rather choose to post than not to say anything for fear of saying something wrong. I support you!

This too shall pass hunny. I don't have any good ideas about pulling out of slumps, no matter how deep and permeating the slump is... except having faith that the "slump" will shuffle off and probably came for a reason... to give us clarity, to teach us something, or even to invoke the frustration necessary to write the blog that so many of us can relate to on some level, and that so many others will relate to over time, but without having the grace, eloquence and talent to express it so clearly and honestly, as you did this week. You speak for those who cannot express the same feelings. I know it. That is big. And for me, once I say the hard things, it takes the power away from the thing and gives it back to me. Reclaim your power babe! Disable the bad feelings with your words! Here's the best thing I could come up with to share here... something funny: Some home remedies I received in an email today: "A mouse trap, placed on top of your alarm clock, will prevent you from rolling over and going back to sleep after you hit the snooze button."

"If you have a bad cough, take a large dose of laxatives; then you'll be afraid to cough."

Much love from North Carolina.