I am selfish

General Blog
1

I am disappointed in myself. Enbrel stopped working for me. Turns out I am a top candidate for a drug trial, now in Stage 3. My doctor is very excited about the response of this drug with PSA. I would be only 1 of 400 people selected in the US. It is a five year commitment. My first reaction was “Yes!” It is only because of people who went before us do we have the treatments we have now. Treatments that for the most part gave me back my life. This was my chance to pay it forward.

Then I read through the information provided. The commitment guarantees you get the drug at some point. But there is a 1 in 4 chance you would have a placebo for as long as 4 months to begin. Once on the meds, You also have a 1 in 3 chance that you will be getting a dosage that is not what you need. If you feel your health is compromised, you can drop out at any time in the 5 years. But then you start your treatment plan over from scratch. There were other things along these lines. When the math is done, you can have 6 or more months with no/bad treatments before starting over. Add to that you can’t do the injections (weekly) yourself for the first 2 years, it was a lot of time at the doctors office. Each injection also has a full work up. My doctor is great (more about him another time), but not close to home or work.

I thought of the 1 1/2 years I struggled as this disease took hold and almost destroyed me. How having no immunity to a stupid pneumonia bacteria sent me into this spiral of having 2 incurable autoimmune diseases. How this disease attacked my lungs to the point I could not breathe, and ended up in a car wreck. How my non working lungs caused heart issues. How I was on over 100mg of steroids daily for months because no one could figure out what was happening to me. How the 12+ meds I was on daily to try and keep me alive caused numerous other issues I now deal with. I wanted to scream, “Sign me up! Bring it on PSA! We’re going to kick you a$$!”

But thinking of all that made me think of my family and what they went through during that time. Having my youngest sleep outside my bedroom door many nights because he was worried I might need something and no one would hear. Missing my oldest son winning an award when his high school team was district champion. The decision of would it be better to drag my “look like I was dying” body to a school event or stay home - what was better? Would my sons want me there, or would they too look at me like the parents did with pity in their eyes? Having my husband be Mom AND Dad. Never mind not being able to work.

So now I have a better job closer to home. I eat with my family every night. I saw my son graduate high school, and start college. He will be a varsity wrestler come January and I promised to be at his first match, no matter where it is. I am getting my younger son prepared for high school next year, and he is also starting wrestling this month. He too knows I promised to watch him compete.

And I CAN BREATHE. Every day. With NO steroids.

And I just can’t give that up. Not now. I am not a good man in a storm. I know the drugs we take are harsh, and give many side effects that may shorten our life span. I know the panic of tests where we “are just looking to see if it’s cancer”. But I choose quality over quantity. I want happy memories for my children. I work everyday to ensure that. And the thought of going back to where I was even for 6 months is a cross I can’t carry.

So I apologize for being selfish, but add to my list of things to be thankful for and for God (insert supreme being of your choice) to watch over.

2

CandiP, this is simply not the right time for you to participate in a trial. I don’t think you need to apologize for that. There will be other people who are in a position to do so, and at some point in the future you may be in that position too.
Yes, we benefit from the volunteers of the past who were willing to participate in drug trials. I am enormously grateful to them. I hope that one day I will be in a position to do my part as well. I travel a long way to go to a PsA research clinic in Toronto. I get great care there, but I also feel good about being part of a pool of research subjects. Each appointment is two day’s travel, plus an overnight in a hotel. It’s all tedious, tiring and really expensive, but it gives me a feeling of giving back. At the moment that (and being a mod here) is how I pay it forward.
If I were to be asked to participate in a drug study at the moment, I would not, for similar reasons to those you give. I need stabilize my health and my life right now. It’s just not the right time for me to do so, as noble as it would be. But circumstances change, and one day I, too may be in a position to help with the advancement of pharmaceutical science. You and I will pay it forward in other ways for now. You have to do what’s right for you at the moment.

3

CandiP, I think self-preservation is a act of love. It is not selfish to treat yourself kindly and put yourself in a position to live the best life you can with the condition(s) you have. I think you would only ever need to apologize if you made a decision which caused more stress, pain and suffering to yourself and others. None of us can afford to compromise our health, mental or physical. The supreme being would not want you to suffer more than you have.

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No you are not selfish. I would do the same thing. I too am a mom of active children. They need me and I need them.

5

Please don't be disappointed. I know how hard it is. You are MUCH STRONGER than you believe. You are I have been in your shoes for thirty years. I raised my children, took care of my disabled spouse and ran my own childcare facility and this disease still beat me. I had to go through the screening for a study in order to get a correct diagnosis after all theses years. I understand the cancer scares, breast eye, brain.spinal. all these issues tested. So kuddos to you for being so patient and loving with your family. God )Choice)bless you .Hope the sun is shining on you today!