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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Monday, September 21, 2009

Learning to Live

I am actually up, okay and moving..... FINALLY.

It has taken so long to get to a place where I can actually function for any significant amount of time.

And tomorrow I have to go back to get more chemotherapy.

Talk about one bad Monday for me. Can I hear a collective "BOOOOOO!"

All of you who thought you were going to have a bad day, maybe you could compare it to mine and not feel so bad?

But then, some of you may be experiencing worse.

With the chemo I am really wondering, Is this really how this is supposed to be?

Do I Get three days of enjoyment out of three weeks?

Is this a side effect of the chemo, the cancer, or the pathological process in my lungs? And why, exactly, are getting these questions answered so damn difficult?

You would think I was asking to predict where I was going to be in 2012 when the stars of leo aligned over the horizon.

All I would like to know is am I supposed to be suffering this much, how long the suffering needs to go on, and what the next step would be.

Am I getting what I signed up for? I don't even know.

Really, I’m a planner being in a planless limbo is no place for a type A control freak to be. It’s anxiety produciding, it’s stressful, it’s tiring.

Really, I’d just like an honest candid response as to whether all the intervention I am seeking is worthwhile or should I just try to keep myself as comfortable as possible for as long as possible and enjoy the time I have.

Obviously, this is a terrible conversation for anybody to have.

I don’t want to have it, but it needs to be done and facilitated properly.

These conversations were really the worst when I was working, and often as I am sure so many have heard, the shit flows down hill.

Yes, I have sat in front of patients and family members and told them they had terrible cancers with very bad prognosis or horrible acute illnesses that nobody ever could have foreseen that makes the outlook pretty bleek.

I’d sit down and have these conversations despite the presence of more mature, educated individuals that I’m sure the patients would have rather heard the news from.

Let’s be honest, if you are having a conversation regarding life and death, do you really want to have it with a young woman that looks fourteen?

I know in the back of their minds they were thinking, how old is this chick? Does she really know what she is talking about? It’s 7pm, shouldn’t she be in bed, getting ready for high school and not sending my loved one off with a hundred different lines in a helicopter?

This shouldn’t be crossing peoples minds at a time like that.

It all goes back to costs vs. quality of care received.

For the cost of inpatient intensive care status, every patient should have the right to sit down and have any news delivered by an MD.

It just doesn’t happen so much.

So guess what the conversation is that I will be having tomorrow?

Yes, I’d like to know how long I can hang out at home with my family and friends even with the misery of hospital stays and runs to the clinic a couple times a week for problems like my mediport (which should no longer be a problem. I decided to take the risk of Coumadin despite the all ready enhanced danger of bleeding) and lung issues.

I could be calling every other day, but I always have to weigh my options of whether my energy expenditure is worth the intervention.

For example, Friday my BP was 80/50 when the VNA came by.

I certainly could have called the clinic asking for fluids to perk up my blood pressure, but then at the very least I would have to be at the clinic all day getting fluids, not getting rest.

That would certainly cancel my great anniversary plans.

Then, I could always be candid, and say that I’m not drinking because I have sores in my mouth trekking down my throat, in which case I could be screwed with an ADMISSION and there goes my Mother F***ing plans for the weekend.

So instead of intervening at 80/50, which is a bp I’m okay with but no one else seems to be, I went to sleep.

In psyche world, if you can fall asleep easily, you’re okay with dying.

I guess I am okay, because I like my sleep.

Good news is, the gasping for breath at night or choking that has kept poor J up for weeks now stopped last night.

I was probably desating from the inflammation in my lungs.

This may have been why I was such an exhausted miserable mess. No person should ever have their great levels of oxygen messed with.

Lack of oxygen to the brain results in craziness.

Thank goodness that’s better.

So sleeping instead of intervention, I was actually able to have fun.

I am finally getting back into the mode and mindset that, if I am going to be sick, I can be sick anywhere.

This includes bridal showers, bachelorette parties, birthday parties, Sunday dinners, game nights.

I started dragging myself out again last weekend to try to enjoy some semblance of normalcy.

Usually my tried and true, "fake it until you make it" theory works, but not so much with the strength of such a terrible pathological process like chemotherapy and it's side effects.

I don't even have cancer anymore.

What is driving me crazy. What really is pissing me off, is that this relapse in health has come at the worst possible time.

I want to work on Patients As Partners, give interviews, write and research alongside having fun on my weekends.

Maybe this isn't realistic? I would really appreciate a candid response to what I can expect, but maybe, unfortunately, the answer is what I have found so many times before, that no answer really exists. It's based on the individual. Blah, blah, blah, blah, blah.

I did go out Friday for a nice meal and Christmas shopping. I went to Keene for Nikki D's bridal shower, and went to Wellwod's for some apple picking.

I did manage to have a great weekend, despite the severe depressive lows I have been having where I struggle between intervening or not.

Having to make that decision once or twice is fine, but having to make the decision over and over again is getting exhausting. It's also making me feel burdensome.

I have Steph as my personal "beckon call girl" on Monday's now so I can count on a fun chemo buddy to keep my head right.

We're still coaching soccer and practice is scheduled for Thursday with games this weekend.

The goal for this round: learning to live within my limitations.


Anonymous said...

I can't begin to imagine what you are going through, and I certainly would feel stressed at not knowing. But perhaps not knowing is God's way of telling you to let Him handle things for a while.
Please keep your spirits strong, continue working on Patients as Partners, and spend time having as much fun as you can stand.
Sending you love and good wishes,

linda keenan said...

im sure the last word your son would use to describe you would be 'burdensome'. even if he was old enough to know what it meant.
xoxo - linda k.

Chris said...

Hey Hillary,

Been following your blog for a little while now and enjoy it! I'm chris alt delete.... Sorry to hear about the nasty mouth sores. I unfortunately know what those are all about. When I was doing GVD I couldn't eat for 2 weeks straight at one point... The pain from mouthsores is always there and exasperated by everything you do (hello swallowing, talking, eating, drinking, etc. all necessities in life right?!). I know this (mouth pain) only piles onto all the other issues that your having, sorry.

For what it's worth however, your pain seems to facilitate some pretty passionate posts (ha ha), how's that for a silver lining?! Seriously though, I hope the next round is more tolerable.

Please keep going -- rooting for you.