Professional Patient

Once a week I drive 45 minutes to Wake Forest Cancer Center to receive treatment for my PNH. The side effects are minimal, but we still do some pre-meds including benedryl to prevent itching. At the same time the nurses are setting up for me to get treatment they also take tubes of blood to send off to the lab. If my labs come back low, I receive either blood or platelet transfusions depending on the numbers. The transfusions do not make me ill but the high amounts of Benedryl received IV is enough to make a horse sleep for a week. Still, it is minimal side effects in the grand scheme of things and all of it is relatively painless.

At one point in my patient career, I was on a blood thinner called Lovenox. This consisted of injections in my stomach, or other fatty areas, 2 times a day. The needle themselves were small and fairly painless but the medication felt as if someone was injecting acid into my side. The worst was that it would never dissipate. It lingered for minutes, which may not seem like that long. Just imagine holding Listerine in your mouth for a min. Now throw a little in your eyes and you are still not even close. Once the pain had finally subsided, I would be left with a bruise and a welt the size of golf ball. Due to the nature of the medication, these would only get worse as the medication was “working” better and better. I still have residual bruising on my stomach from shot I received before I had my son and he is almost 8 months old.

My most recent pain hurts worse than all of these combine. I think a lot of it has to do with the fact that there is some sort of finality to things.

Recently, I had to have my port removed. For those who don’t know, your port helps a patient receive medication  and transfusions with out the trickiness of having to place an IV. For those of us who have to be stuck a lot, or have weak veins, they are so important. I have had one for almost 8 years. Until recently.

After 8 years, there was concern that my port might have an infection and had to come out. It did not want to come out. For 4 hours they pulled on it while I was only under local anesthetic. Finally, the pain got to be too much and I passed out. I remember coming to and the surgeon saying “I can’t do this to you any more. We are going to send you down stairs to be fully sedated.” When I came too, it was gone. I was panicked. How was I going to get my chemo? How were they going to do blood test? I don’t have good veins and I did not need to look like a drug addict. After many tears the doctors reassured me that once the virus had left my body in a week, they would be willing to give me my port back.

The Wednesday before my port was due to be replaced the Oncology team on call came in to tell me that my levels were not high enough for me to have the port placed. That basically, it was too risky, and that there was no doubt that I would contract an infection and that was the least of all of the possibilities of what would happen if they operated.

So now, not only was I not getting my port back, but I was being told that something that is normally viewed as a simple, out patient, return to work tomorrow, procedure could now kill me. Somehow, it seemed harder to feel that things were going to be okay. Not that they were not okay, but the things that some people have and take for granted I was all of a sudden jealous of . “Simple injuries”, “standard procedures”, “minor surgeries”, these terms no longer apply to me. I am at the point I knew I would get to one day but no one ever wants to see or have to face.

I might not get better. My levels might not ever get high enough for me to be able to do the things that can help me survive. I look at my son and I cannot breathe sometimes. It is so hard knowing that my beautiful boy maybe without a mother sooner than most. That my husband may loose his wife and partner in crime. That my mother may have to bury her only daughter. These are all things that play over and over in mind at the most unfortunate times. When I face problems with insurance, when I have a major bout of depression, when I feel like I am failing at every other aspect of my life, this little voice will whisper, “You’re going to die soon anyway.”

It is in the small things, the cracks, that I see light, and continue to dig toward it.

Today my insurance fell thew on the medication that is currently our last hope to raise my platelets. Not only was it rejected but it was deemed “unnecessary” and was going to have to go before a peer board. This could take weeks and mean while my platelets are holding on for dear life. So I got on the phone, got my husband on the phone, got any nurse who would listen on the phone to talk to who ever it was that I needed to talk to to get the approval to get this medication. If they wanted to say it was “unnecessary” they were going to have to say it to my sobbing face! Long story shot – I got my incredibly painful shot that should help my numbers go up.

I’m not going to give up with out a fight. But fighting hurts, and leaves bruises and at times makes you want to cry. And that’s okay.

 

 

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