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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Thursday, July 23, 2009

Go Patients As Partners!

I slept great last night! I fell asleep early, who knows when, whenever my head hit the bed, and then I stayed fast asleep until Xander woke up this morninging, jus the way it’s supposed to be.

I am again “sleeping well at night.”

This is a question all therapist seem to ask when assessing my coping with my disease.

One of the first assessment questions is always, “How do you sleep at night?”

To which I get to reply, luckily, most of the time, “Great, like a rock.”

This answer is usually cause for a flash of surprise across their face.

“Sleep” is a very literal, concrete way of asking for I am coping with my disease and the possibility of death. The fact that I can knock out at night with not a care in the world in spite of my disease is, apparently, cause for surprise.

But I know why this is. .. ..

It’s because I am happy and comfortable with the life I have lived.

I can sleep at night!

I haven’t been sleeping at night since the nasty nodes flared up in my neck in a swelling frenzy, and now, the just keep popping.

I can feel the cancer now, and it’s not because I am obsessively looking like before. I don’t want to know where it is. It’s because it just keeps coming.

I was seen a week ago for the swelling flare-up in my left neck and pain, that’s when a node in the neck and one in the back posterior to the axilla (behind the armpit, which is weird) could be felt, now it’s like playing “pin the cancer on Hillary” again.

I have a hard, pebble like tumor on the left jugular, now I feel something in the right neck, and the right armpit. My spleen appears swollen, and none of this accounts for what I have been FEELING internally.

As a seasoned, senior cancer patient let me tell you can I feel those buggers inside trying to takeover my space and I don’t like it.

I can feel a mass in my neck moving in on my ability to swallow and breathe.

I can feel myself getting short of breath, easily winded, due to something in the way of my breathing.

I’ve been through this all before, and I am surprisingly prepared and comfortable.

I have told Xander and Lex, in no uncertain terms, that my cancer is back. They are both old enough to hear the message loud and clear.

So why was I so stressed out, losing sleep, running around the house like a maniac, feeling like my head would pop at any request, wanting to just be left alone.

Certainly a portion of that was my cancer, and I do have quite a bit to say about how people can be understanding during these transitional times when the possibility of cancer is very real but can not be confirmed.

In my experience, the waiting game in disease, is the worse. It is probably the most emotional, dramatic part of the disease. Trod lightly with patients and family members during this time.

But I have other GREAT things to tell you today.

My meeting with William at the Department of Health, in my opinion, went great!

I left so excited. There is definitely potential of funding for my project within NH, possibly from stimulus funds.

How the project will be funded, the exact process is still up in the air, because the legislative process has not yet defined how stimulus funds will be doled out.

It has, however, allotted funds specifically for projects like mine for individuals, such as me, with ideas that meet the 17 page text of goals and objectives the State of NH would like to accomplish to obtain better patient centered care.

What was fabulous and most exciting is that as I explained the business concept of Patients As Partners to William he kept stating, “this meets the objectives!” or “This is one of the objectives!” with excitement.

I haven’t seen the objectives NH devised in conjunction with all the healthcare stakeholders in NH, all the stakeholders in NH being: the hospitals, pharmacies, governmental agencies, insurance agencies, advocacy groups, special interest groups, etc.

What I have noticed, as a trend, everywhere, not just in the office at The Department of Health but also on every news program whenever a politician speaks in regards to healthcare reform, whenever there is an article regarding the stakeholders who are participating in health care and would like to see the situation improved, I have noticed that everywhere there is one key group lacking.


Within the state of NH objectives there is a very clear bubble graph with the stake holders with “patient Centered Care” clearly labeled as the primary goal and objective in the middle, but no where is the patient listed as a stakeholder!

We are the biggest stakeholders. We are the people with the information, our information is vital, and legally important, our medical records, the information over which this whole debate has started, is clearly owned only by each individual patient.

Patient Information, our information, is protected like Fort Knox. Patients do not realize the power and control we could have in the health reform process by realizing this simple reality.

IF health reform is looked upon as from a business perspective, Patients are the CONSUMERS over which all these stakeholders are fighting.

Without the consumers, none of the process would exist. Patients are in a great position right now to speak their minds and significantly affect how care is administered in the future.

I can say this now, loud and clear, because the meeting went well.

He liked my idea!

I’m still a little starry eyed and awe struck that seeing my idea through the political process has gone so well.

I’ll cross my fingers that it continues to do so, but I believed I accomplished a huge leap in the right direction yesterday.

Not only did the meeting go well, but William, The Chief Information Officer whom I met with at The NH Department of Health, thanks to Sen. Lou D’Allessandro, Sgambati, O’Dell, and Bud Fitch, the man in charge of facilitating the implementation of stimulus money.

All I can say is, “Hooray!”

It appears, they have money but a lack of innovative ideas, and I happen to have a lack of money but an innovative idea.

It’s a match made in heaven.

Also, my father, who accompanied me as my chauffeur (nobody really thought I drove long distances did they?), which was really just a guise to sit in on my first big professional political meeting, let the cat out that I write grants.

My ability to write grants is a closely held secret, but since it’s been let out, by my father, on multiple occasions, I’ll just give in and announce it now.

Grant writing, in itself, is a much sought after literary art, but when the ability is combined with professional knowledge such as of the health care system, construction infrastructure, or behavioral health as I’ve written in the past, watch out now.

They sky is the limit.

I have been writing grants since eighteen, and actually wrote a Community Block Development Grant (which I am very proud of) to improve the existing infrastructure (that’s construction stuff in a road like water, electric, etc.) to the CEDA Gristmill Industrial Park in Charlestown.

I wrote his in conjunction with my father during one of my “hurry up and wait periods,” when I was technically in remission but was awaiting a second consecutive clean PET scan.

Yes, I chose to write a grant in my spare time as a hobby.

When it comes to being disabled, and experiencing such limitations at my age, an age when I always envisioned myself accomplishing great things, making lots of money, and changing the world, I am constantly searching for a way to find my niche in the world.

I want to find a way to contribute and make lasting impressions for the betterment of this community.

I guess, despite all this, I am still developing normally. I forget what psychological development theorist stated that in a person’s 20s they should achieve the goals and acquire lasting social ties and relationships.

I think it may have been maslow? Who knows?

It’s good to know I am still developing normally while struggling my disease, but I certainly went through a period after my first transplant and subsequent radiation when I thought treatment was FINALLY finished, and I could start moving on with a career, that I had to take inventory of what I had left.

My cancer, and its treatment, has robbed me of many of my previous abilities.

I cannot work safely as a bedside nurse. That would be too much of a risk to my immune system. I have also lost much of the feelings in my hands and feet. Neurologically I am unstable. I don’t know if I could physically accomplish the complicated tactile tasks associated with advanced nursing school.

I had to stop. I couldn’t focus on what I couldn’t do. I had to focus on what I still had, and what I discovered I still had was my ability to write, but most of all, access.

Yes, access. Access to business people, specifically the business people that would be necessary to gain the information and do the research needed to write a grant to improve infrastructure leading to industrial building lots creating jobs, jobs, jobs.

We wrote the grant with special guidance from West Central and were allotted $500,000. Best of all, the participating businesses pledged the creation of 19 full-time jobs, which still happened despite the economic down turn.

I’m proud.

Maybe, I’ll get at it again, this time, with my idea.

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