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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Sunday, January 11, 2009


I think a significant transition has been made in the treatment of cancers that has not yet been widely accepted among the medical community, and that is that cancer, in some instances, has become a CHRONIC Disease.
I sat next to an 83 year old priest this past summer who had spent six years moving from trial drug to trial drug for his multiple myeloma.
You know what I thought when he told me, “F***. Could this happen to me?”
I didn’t even know that was an option. I thought it was live or die. Then the thoughts of how I would have to manage cancer over YEARS came into play. My family would have to move to Boston so I could be closer to treatment. I don’t think my husband would do that, and could I really handle the commute for treatment? No thank you.
This is a terribly daunting idea. I’d always been motivated for the hope for a cure, but now, some of us just need to be motivated by the hope for a life, any life, even with cancer.
Just check out what Bekah says in “True Beauty Never Hurries.” She refuses to have an allo transplant. She’s switching from trial to trial hoping for management of her disease to extend her lifespan. She’s still pursuing her masters despite this MAJOR LIFE DECISION at 22 years old.
Some of you readers, look back at where YOU were when you were 22 years old and put yourselves in her shoes.
I don’t recommend putting yourself in mine.
I encountered a 65+ woman the other day in the waiting room who informed me that she’d “always be in treatment.”
The treatment of chronic diseases is significantly different than those of acute processes (again, I don’t think there is anything cute about this).
The management of chronic illness includes quality of life issues and home training to improve a person to a standard but not necessarily a cure.
What I’ve seen in my years of treatment has been that I receive great medical care while I’m undergoing treatment and the direct aftermath, but once I hit a certain time, it’s adios.
No thanks. Don’t call me. Call somebody else. I am no longer your provider.
What? No transition. No, maybe we should coordinate with your PCP because you are still taking a lot of XYZ.
Nope, it’s a pat on the back, you’re now in remission, and I hope you make it without us.
First of all, if I were a normal Hodgkin’s patient with an acute “beningnancy” that was cured quickly with ABVD, I STILL think I would like some guidance on how to transition BACK from the cancer center to my PCP.
I transitioned TO the cancer center through a communication and referral process, I would like to return in the same way.
Just dumping me off on whatever provider will take me undermines the psychological trauma I experienced just from diagnosis.
Worse, since I am the patient I am, some providers just outright don’t want me or won’t take me.
I don’t want a provider that doesn’t want to handle my case either. Then, I’ve been told, you need to talk to so and so by the office of providers.
Sorry, I am no longer under that person’s care. I’m on your watch now, buddy.
What have I done when this has happened? I tried to be the nice girl. I tried to be polite. But really, that got me nowhere.
Then the screaming, hollering, and stomping began. Clearly, it hasn’t really stopped since. I do play all cute and nice until you piss me off, and then it is on.
Hell hath no fury like a female cancer patient scorned. I want my treatment. I feel people are messing with my life and livelihood. If this happens, All hell will break loose on their unsuspecting punk asses. It is fight or flight time. I have officially undertaken a mission using Darwin’s theories. I’m going to adapt or die.
Now, you know how I REALLY feel. I think people have suspected I had this mentality for a while. Now, I’m admitting it. I think, if there is something in my way, I just need to “get rid of it.”
Let me give you an example of how strongly I feel about things getting in my way.
When I was twelve I contracted mono, which enlarged my spleen. I was told that due to my enlarged spleen I COULD NOT PLAY SOCCER!
What? No! This couldn’t be happen. I had plans and goals and that nasty spleen of mine was getting in the way.
I did some research. I talked to Doc, and what I got out of the conversation was that the spleen was an AUXILLARY, or unnecessary, organ, and I could live without it.
Great. That spleen had to be ruptured so I could go back to my game. I let Heather beat my stomach with whatever she could get a hold of so I could have it removed.
Yes, it was a bad idea, and no, my spleen didn’t rupture (Thank goodness because it is useful), but we sure as hell tried. Not only did Heather hit my spleen directly, but when that didn’t work, she took our mini trampoline and swung it so the edging would reach under my rib cage. We thought this might be more effective.
Sorry mom and dad. I know you never heard about this. SURPRISE. This idea was just about as good as Heather and my idea at 4 to have a “contest” to see who could swallow a bigger coin (Heather won with a quarter).
I WAS this cancer patient who should have been simple. I WAS a woman who should have been cured from my first transplant. But that just didn’t happen.
I was told once by a man looking down and shaking his head at me in dismay that, “this wasn’t supposed to be like this.”
No problem, I hear this all the time. If I don’t hear it, I know people are thinking it. Except THIS TIME the words came from a well respected oncologist I worked with previously who has 25+ years of experience and has worked at SEVERAL major cancer centers.
Changes the context just a little bit, doesn’t it?
He is a man with an iron poker face that rarely displays emotion and I AM the person he is shaking his head about.
If this man doesn’t like what is happening to me, I’m screwed.
What’s worse is that this situation occurred in December 2006!!
Yes, professionals were saying this about me TWO YEARS AGO!
Do you know how many people I have known that have been diagnosed with blood cancers and died in the period of time that I have been in treatment?
I don’t because I block them out of my head. I pretend I never knew them, never met them, and what an unfortunate, isolated, series of events that blood cancers kill people.
On the upside, I do now know a couple patients who have specifically maneuvered a similar path as mine with the same doctors, Gautier and Alyea, who I refer to so lovingly as my “lymphoma dream team.”
But neither of these men have ever mentioned that this could go on and on and on with no cure but MANAGEMENT!
I didn’t know patients like me existed until I became one. Now, I’m seeing us all over.
HIV/AIDS took a similar pattern of treatment with the advent of ARV drugs. Suddenly, a disease that was once a death sentence was now a life sentence.
Have you seen Magic Johnson recently?
Try to wrap your psyche around that one.
It feels almost like a stay of execution from death row (or what I imagine it would be). Am I going to die or not? Let’s just get down to the nitty-gritty because this process is EXHAUSTING.
Emotionally, financially, and physically exhausting. Holistically exhausting.
And now I’m just getting irritated with it. I’m irritated with the whole political process and the red tape that doesn’t allow me to get the information I want immediately!
This problem will have to be fixed.
Now, as far as the whole chronic management of cancer, I don’t think this has been studied yet.
It is, to my knowledge, a fairly new phenomenon.
Yes, I’m a phenomenon thank you, a “tenacious” one.
But how would providers go about picking the patients to research this idea with? Longitudinal studies for cancer? Who would have thunk it?
But who has the crystal ball out there to tell which ones of us will live or die?
Which patients have chronic cancers and which ones have acute curable ones?
Who knows? I just talk to everyone I can get my hands on. What I do commonly with my friends in the waiting room is chat. We give each other advice on how to make our hair look pretty and what fabrics work well for our skin or how to schedule our lives around treatment.
I feel like I’m owned by the hospital. I’m at their mercy. They call, they want to see me at 8:30 am in Boston, 8:30 it is. No if, ands, or buts. It’s cancer boot camp, not holistic healing.
You know how many times I’ve wanted to scream “I HAVE A DAMN WEB CAM AND EMAIL!” If it looks like something of the web, then I’ll come see you.
It is just not in my best interest to drag myself out of bed at 5 am to travel three hours after undergoing HUGE amounts of therapy.
No thank you.
This ranks right up there with the phlebotomists coming into my room at 4:30 in the morning to draw blood.
I am the patient. You doctors are here to heal me. Why, exactly, am I catering to when yo want to do rounds?
How would you feel if I came into your home and started poking you with needles at four in the am?
Pretty pissed, huh?
And then, when I’m done, I’m going to tell you to “get some rest.”
Okay, buddy, was really trying to, but SOMETHING is just interfering.
How hard would it really be to change your rounds to lunch time?
Just because it is the way it has been does doesn’t mean it is the right way to be done.
Just like the adage, “What is popular isn’t always right and what is right isn’t always popular.”
So where do I go from here, and where do others like me go?
I’m coming up on empty on this one. Okay. Okay. So I’m not exactly coming up empty. I’m just not telling right now.

1 comment:

Kay said...

I feel for you. I don't have cancer so I don't understand all that it entails. I have Behcet's. Went 2yrs undiagnosed in massive pain with doctors just looking on and flinching. I was envious of cancer patients because they get to fight and live or fight and die, but they get to move on, so I thought. After my diagnosis and I started treatment (nothing as horrible as chemo thankfully) I expected some grand something because I was "better" but nothing, nada. Just the lull of life speeding on without me while I tried to pick myself up from the hellacious years previous and prepare for the unknown. My whole family has Behcet's, not literally, but they all are living a life altered by Behcet's altering mine. Life doesn't resume as normal when you've been through such a tragic period of pain and uncertainty and you don't get a cure. Treatment changes your life for the better but doesn't fill the gap that illness left.

you are not alone sister, you are not alone. Life is ugly sometimes but you are making a beautiful impact. Thank you