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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Wednesday, July 15, 2009

If you thought it couldn't get any worse....

So maybe things can get worse. I did make a joke of my upcoming seven years of bad luck for smashing that review mirror saying that, at least now, I know, that I have seven years of SOME luck.    . Well, let the bad luck begin. On that very same day after the mirror crunch I started feeling a familiar ache in the left side of my neck, above the collarbone.   No amount of morphine relieves this pain. It's unrelenting. I have had this before, I would say on three or four occasions, where pain of this characteristic would come on suddenly.       . The first time was in september 2006.  I had stopped my ABVD chemo regimen on the basis that I had reoccured during treatment and was awaiting either a biopsy to confirm relapse or some other difinitive symptom of cancer.   . That definitive symptom, in september 2006, was left supraclavicular pain with swelling. . That symptom was enough to start inpatient chemotherapy in preparation for my first auto stem cell transplant.                             .     Imagine the fear, the paralyzing terror, that same symptom incites in me now, three years later when I have tried chemotherapy after chemotherapy, radiation, trial drugs, and a second allogenic transplant.            . When the pain started and my neck swelled in 2006 I knew I had a treatment plan in place and a doctor to swoop in and care for me.         . You would think time would improve the conditions. The same feeling of fear and horror of relapse come back. The same urge to cry in devastation. Those emotions do not change with every reoccurence. I dare say they get worse as the stakes are raised higher and your odds are circling the gutter.              . At least I can be lying in the gutter, but still staring at the stars.        .   As if having to face the very clear reality that my cancer may be rearing it's ugly head in the form of a second head in my shoulder, I have to somehow access treatment.     You would think this would be easy seeing as I have been a patient in two systems for years now.     . I called dana farber for an action plan. Melissa, my reigning np was out. I paged dr. Alyea twice to convey the urgency I felt and received a call from his right hand nurse, pat.   . The decision was made I needed to be seen. Pat would call dartmouth to arrange the appointment, I gave her four points of contacts that could guide her in getting me an appointment. She spoke to an np who said I could be seen in the afternoon. . Not long after, I received a call from the clinic and was patched through to the np I would be meeting with, or so I thought.       . I tried to be nice. I tried to be polite.I tried being extra cordial through the tears and fears of a rapidly growing and painful tumor in my neck. I understand the precariousness of the situation and that the np is probably uncomfortable receiving a high acuity patient she has never seen nor heard of before. I tried to alleviate her obvious apprehension, but somewhere somehow that went so wrong, and let's be real here, I am calling as the patient with severe cancer pain and a possible tumor growing out of my neck.        .   I think if anyone deserves to be cut some slack in the conversation, that would be me.     . NP Ratchet asked if this was an emergency. I said, no, I did not think it was an emergency, but I did think it was urgent and needed to be seen.   .   Np ratchet retorted that I should be seen in the emergency room under these conditions.        . I said I disagreed, that I had been working with both df and dhmc to have a safety net of cancer coverage since often there is a window of time when a symptom presents itself before it comes emergent and I would prefer to be treated during this period.        Really, who wants to wait around for all hell to break loose, for humpty dumpty to completely fall apart, before getting put together again.       . That's just not efficient practice.    .      At that point she asked me exactly what I wanted. I told her I was THE PATIENT and that I had been referred to her by DANA FARBER and if she wanted the treatment plan, she should probably communicate directly with them.       . This is definately where communication started to crumble. I am in pain. I am hurt. Psychologically I am in shambles thinking that my malicious hodgkins has once again foiled the little joy I'm trying to squeeze out of what is trying to be a short life and this professional Is drilling me about what I want for treatment in a condescending tone that says , " how the hell did you even get through to speak to me directly since you obviously know nothing.".      . Oh honey, if you only knew.   I hate that this happened to me, but I also hate what it represents. This represents a starch social structure in healthcare, a clear heirachy, that patients are not to disturb their providers with innane complaints such as "I have pain unrelieved by 15mg of oxycontin and 15mg of morphine that kept me up all night and swelling that is eerily similar to the growth of a tumor,". Then, we as patients are supposed to disregard their lack of empathy as the almighty care provider and say, "okay, I will now trust you with my life".   .    Being nice, patient, understanding and intelligent in a health care capacity are not mutually exclusive. A provider can be gentle and understanding while still providing effective, efficient quality care.        . There are many fabulous providers out there.   NP Ratchet had received all the information necessary to prepare herself for our meeting. She had the names and numbers of my providers. She has my records from both DHMC and Dana Farber at her disposal. She also has a specialty in cancer which will benefit me as the patient over going to an emergency department. Through the clinic she also has the access and the ability to order every test the emergency deartment does, with the same ability to ask fot it "STAT.".  Only in a clinic, I am receiving better specialized care ina safer environment that will not expose my compromised immune system to the germ fest also known as the emergency department.    . NP Ratchet was not among the empathetic helpful providers I have encountered.   I don't quite now what the problem is, but I do know, once again, I was left in tears, wondering if the quality of care I will receive will be subpar due to the NP's clear preconceived notion that I am in no way her responsibility, but if I am not her responsibility, then who is? Please keep me in your prayers as I again prepare for treatment.


Priscilla said...

You and your family are always in my prayers. Keep the faith! There are many of us out here in "internet land" praying for you.

brynn said...

You are always in my prayers. I don't know what to say Hil...I am here for you if you need anything. So many love you and care for you. You will make it through!

Anonymous said...

I know that this is a scary time, but remember that we are all praying for you and totally convinced that you will prevail. You are the strongest, bravest, and most determined person I have ever known.

Hang tight, girl! And kick that NP Ratchet in her starched derriere when you finally meet her!

Anonymous said...

Hillary, just know how many people are thinking of you and your family and praying for you at this time. Keep on keeping on!

Anonymous said...

Please, please, be assured that we, the devout readers of your blog, will keep you ever present in our thoughts and prayers. I take your treatment personally and it angers me to hear about medical professionals who have lost sight of the life and soul inside the body they are treating. I know you will keep fighting your own battle and will forge ahead to change our health care system. Thank you!

Anonymous said...

grrrr that woman needs to get her act together... this is our Hillary she is dealing with! My heart aches right now after reading this. I am always thinking of you Hillary and keeping the faith that you will jump this hurdle too. Much love!!! Janet

Anonymous said...

There is, I'm sure, nothing that any of us can say or do, that will put a nice smell on an obviously "stinky" situation. Nor can any amount of comments on the blog take away the sting of a health care professional with poor patient interaction skills.

But I do hope you will get some solace from the fact that there are a lot of people out here Hill, who really care a lot about you ... who are rooting & praying for you ... & who want nothing more than to see you happy & healthy (except me of course & I expect you to be winking at me when I'm in the old folks home!!).

Try to stay strong sweetie ... & if there is anything that this old guy can do, you have but to call ... & I'll be there.


Anonymous said...

Ahhh what a jerk! And to think that she responded that way to someone with a medical background who actually knows what they're talking about... all other patients wouldn't even stand a chance. I love you Hil!


The Savage's said...

God Speed to you, Hilary. We will keep you in our prayers.

Anonymous said...

Hillary, you are constantly in my thoughts and've been through more than any one person should go through, but stay strong and know there are tons of people pulling for you.....keep fighting!!!!!

Jennie said...

Just wanted to let you know that you have more people praying for you all over the country - I've sent a request to FL and to NY and we're all praying HARD.
With much love, Jennie