Where to start?

Another question without a really good answer. I mean, besides the obvious, yourself... (You know, the whole Breast-Self-Exam... And then the Doctor...)

For me, I notice the changes in my body right away. I am not a hypochondriac or anything. I am just aware of my body and when it is different than it normally is. I may not know what "normal" is, but I certainly have a strong grasp on what is "normal" for me.

I noticed the lumps right off. And since I am on Medicare, and I was 33 at the time, that meant I was off to Planned Parenthood. I made the appointment, kept the appointment, and saw a Nurse Practitioner. Who had me come back to see a Doctor. Who was very unhappy with what she found. Giant lumps riddling both my breasts. She decided to place me on a Vitamin Therapy and restrictive diet for six weeks. I came back and she extended that time for six more weeks.

After a total of three months, I had had some improvement, but there was one lump in my right breast that still really worried her. she wrote out a script for a Mammogram and an Ultrasound to go with her referral to the Susan G. Komen Foundation. I was advised that the costs "might" be covered, but that I needed to find a way to pay for it no matter what.

I took my papers and looked up the Susan G. Komen Foundation on-line. I need to find a center near to me to call. And there on the site it said that financial assistance was available to those women over the age of 35. But I was 33. And I am on SSDI (Social Security Disability Insurance). Which means there is NO, and I mean NO money left over for something as frivolous as a Mammogram and Ultrasound. Where on earth was I going to come up with that kind of money? (It took me two years to pay off a pair of life-saving emergency surgeries. You know the unimportant sort of things that Medicare does not cover most of...)

But there on the site was a link to another site. This one said that they offered financial assistance to those that qualified. One of the qualifications was that the WOMAN be at least 34 years of age. Fine. At least I am a woman, I thought. But that would mean waiting another 3 months before getting testing on the lump(s).

I hunted around on the internet some more. Each time coming up to a brick wall. (aka MY AGE) Each and every place I found required that the patient be at least 35, and more often, 40 years of age. (Seriously? Do they really think that Cancer waits to hit until after your 35th birthday? Do they not know that cancer can come at any time and that everyone is at risk? Does it really take a HUGE statistic to make one person's need greater or more important than another's? Or do they just think that everyone under the age of 35 or 40 can afford to pay for costly tests and treatments?)

So after hitting my head against that wall about a gazillion times, I did what I do best. I decided to put my head in the sand. I was going to be an ostrich. What was 3 more months. I would just stay on the vitamins and diet and wait it out. I mean, if it was that important, the Doctor would have sent me in for tests right away, right?

That worked well enough for a while. That "while" being until I received a letter from Planned Parenthood stating that they had been trying to reach me and that it was urgent. Urgent??? Oh boy... (And since I travel so much, it took almost a month for the letter to even reach me...)

So I called Planned Parenthood. And they pulled my file. And had me wait... Wait as they called the Doctor on her cell phone while she was on vacation. (Vacation? What Doctor leaves a note in a patient's file to be called while on vacation?)After the receptionist relayed both sides of the conversation, the call ended. The end result? The Doctor was highly concerned that she did not have the results of the tests yet. And then she was highly concerned that I had not yet had the tests. And all I could say at that point was that I had waited this long already, I could not afford to pay for tests out of pocket, and I would take the tests in 4-5 weeks when I turned 34 and became eligible for assistance from the site I had found on-line.

At one time, I was so organized. But that is not the case these days. And sadly, it has not been the case for some time. I THOUGHT I had put the script in a safe place. But I could not find it anywhere. And to make matters worse, I moved. Packed up everything in a haste and moved to a new home. I am still trying to sort things out. And still no script for the tests.

I drove 2 hours to the Planned Parenthood that had my physical file, about 10 days before my 34th birthday. It was almost empty, but they were booked for appointments. I spoke to the receptionist, who pulled my file and did not see a copy of the script. Then she was told that they did not keep a copy of the script requesting tests, they only made an entry into the file that a script was made and given to the patient. (Which I promptly lost...) I waited a total of 4 hours and then I could not wait any longer, I had to leave. Without seeing anyone who could re-write the script.

My Birthday came and went on the 5th. I let it slide by. On the 6th, I went to look up the website that had the information about the financial assistance for women over the age of 34 with special funding needs. I could not find the site anywhere. (I had been having computer trouble and being the non-computer geek that I am, I gave it to someone to fix. I THOUGHT I had saved everything over to another drive while my computer was being cleaned out. It never crossed my mind that I would loose all of the bookmarks for the internet. I mean, that is where they are stored, right? Wrong. They CAN be. But mine were not.

So I am starting from scratch. All those weeks and weeks of research and dead ends. All that head banging... For nothing. But after four days of feeling the pressure, I know I don't have the luxury of time and pride anymore. I can no longer be a lemming and just follow along with the wait and see game. I can no longer be an ostrich with my head buried in the sand. It is getting hard to breathe under all that weight, and sand is unstable. It shifts. If I am going to be an animal, then let me be the lion... But not all of us are born that way. (At least I wasn't...)

So I gave up my privacy and shook away my pride and I asked for help. I posted up in several places asking for information about funding for those of us that are too young for the well-known foundations, centers and groups. And I started this Blog.

I have a list of places to call on Monday to get information. And to make sure that you know everything I know, I will be posting up that information as well.

For now, you know everything that I do. Which is not much.

This was easier the last time I went through all of this. I was 17, I was covered by a HMO; Kaiser, and my Mother was the lion making sure that I got everything that I needed... (Your head is shaking again... You mean I have been through all this before? And I still managed to bury my head in the sand? Please don't loose faith in me just yet. It is not as bad as it seems. Or maybe it is... I don't know.)

When you live with the threat of something for so long, you grow complacent. When you get used to waiting for when, instead of if, you get used to waiting. I was already following almost every lifestyle choice advised that was thought to help prevent cancer. I had fallen off of the "No Caffeine" wagon, but have been good about everything else... Tons of soy and lycopenes and Vitamins, never smoking, rarely drinking, and so on... I just finally reached the point where I thought, where I still think, if I am being truly honest, that I am NOT going to have cancer.

But the only way to be sure is to get that Mammogram and Ultrasound. And I will. If for no other reason than I want to put this all behind me and move forward with my life. I will face it if I have it, and then move forward. Or I will woman-up and take responsibility of my health and then move forward.

If there is anything that I know, it's how to survive. If there is anything in the world I want, I want to live. Really live. I hope you'll join me.