BAD IS GOOD

March 30, 2010 Tuesday

Funny how something bad can turn into something good. I've been AWOL for the past week, enjoying my freedom. I've been to dance class several times, chanting with friends, watching movies, and basically ignoring my "in treatment" status. I didn't blog because I've been too busy enjoying my life. My daughter is coming home in two days, so I've been digging out her room since it's become the 'dumping ground'. Doing unfun things like taxes. Blech. Who wants to hear about that? So I played hooky from the blog. I have decided to start to turn the blog into a script. Scary, but I am determined to do it, good or bad.

I knew I would blog today because I had to visit the Cancer Center today to see my oncologist and my radiologist and also to have my herceptin treatment. This is how I thought it would go.

"Today saw my radiologist, she is very happy with my progress and doesn't need to see me again for a year. Dr. Speyer likes my hair and says my bloods are perfect. Happy Easter, see you in three weeks. My herceptin treatment goes seamlessly, and I am out the door in under 3 hours."

NOPE! I went to get blood work done first. Sarah, my nurse, set the port iv in place with two tries. The first attempt hit the wall of the port. =/ But the second one went right in. Today the port would not cooperate, it would receive but it wouldn't give. It happens. So Sarah gave me an injection of Heparin and let me sit for 15 minutes. The port finally decided to work. I stood up to go to Dr. Speyer's office and the coughing began. I felt like I had something in my throat, I coughed more. I felt like my throat was closing up. I coughed harder. It was okay to take breathe in, but just like the port, I couldn't get anything out without falling into a coughing fit. I went to the waiting room with a cup of water in hand, and sat there for a while, gagging and choking on nothing. The coughing got worse, so I decided that it would be best if I got upstairs ASAP to have this checked out. It then dawned on me that this had happened before when I had trouble with the port. I was given Heparin then, too. I had a sudden without warning coughing fit then as well, but it didn't get this bad. I wondered if I could be allergic to Heparin. I checked in upstairs through my coughing fit, and it seemed as if it would never end. Patients and their loved ones stared at me as if to tell me I was unwelcome there. I couldn't tell them not to worry, I wasn't sick, just choking...

Things were just plain old weird today, because Dr. Speyer came out to get me; not the usual drill. He could tell I was struggling to breathe, so he checked my lungs right away. At first, perhaps the heparin in the port had thrown a clot (very scary thought), maybe the port was kinked, so a test was ordered to have dye injected and then an xray to determine if the port was okay. I took two benadryl per doctor's orders and went down to have my herceptin treatment. Treatment went really well, and I even got a massage from R.E.S.T.! I was saddened to learn that R.E.S.T. has run out of money and that this program might fold if NYU Medical Center decides to dump it in a couple of months. I wish I had money, because I'd throw millions at them to keep it going and spread it to all the treatment centers. These massage therapists have made the journey bearable. I have to write NYU Langone Cancer Center to keep it going.

Next, Ed and I made our way in the pouring rain to the Hospital where I had my port study done. Ed had found a parking spot, but it would have been impossible to find another one, so we elected to walk. Soggy from the rain, I checked in and headed up to radiology. I was asked multiple times why I was there. I finally met with Dr. Aquino who once again asked me lots of questions. I repeated my experience, and I could tell she had already come up with an answer. I climbed up onto the bed, and was prepped for the study.

The good news is that there is nothing wrong with the port, but the placement is "short". It's suppose to go into the opening of the heart, but it doesn't quite make it. Dr. Aquino looked at me and said, "I recommend that the port be replaced." Are you kidding me???? She did say she'd would pass on her recommendations to Dr. Speyer and he would have final say. I was so bummed out. Will the Insurance Company pay for this? I've cost them so much, I wouldn't be surprised if they denied it. So Ed and I head back to the Cancer Center to meet with Dr. Fermente's Nurse Practitioner, Marie. I tell her all about what happened, and she agreed with me, I had an allergic reaction to heparin. The good news is that I am doing great and Dr. Fermente doesn't need to see me again for an entire year. So I got 1 out of 3 in my vision.

I got home around 3pm; from 9:30-3pm. See what a hiccup can do to your day? I wasn't home too long when I got a call from Debbie, Dr. Speyer's nurse. You guessed it, the port has to come out. It's just not worth it to replace for 10 more treatments. I'll just man up, and get the iv in the arm. The chemo drugs are what really destroy the veins, not the herceptin. In three weeks I'll have a blood test to check the clotting factor before surgery to have the port removed. I don't know when the port will be coming out, but it will be within 6 weeks.

So from a bad came a good. If I hadn't had that reaction to heparin I wouldn't have known the port was short and basically hugging the wall of my artery, so fluid could flow in without a problem, but the tip would suck up on the wall of the artery thus making it difficult if not sometimes impossible to draw back. Looking back over treatment, the days the port would not cooperate were the days my chest would ache for a couple of days. Marie called it like getting a hickey on the inside. I'm glad I am getting the port removed. One step closer to finished. So what if I have to get stuck in the arm every three weeks, I'll deal. It's not like I'm hooked up for 4 hours, it's only 30 minutes.

Lesson learned, I can't use Heparin anymore, it causes mild anaphylactic shock, and will only get worse. I'm glad I spoke up and refused to believe this was a random occurrence, because it wasn't. I am grateful this happened. Now I know, and I want everyone to know and to really get this, Only You Know Your Body Better Than Anyone, if you feel like something is off, it probably is. Stand up, let your voice be heard, you aren't just the patient having stuff done to you; you are part of the team of healers.

I am so exhausted between the benadryl and the craziness of the day, and the dreary overly wet day, I just want to curl up and sleep the rest of the day away.

Remember, that everything happens for a reason, and nothing is random. What, at first, looks to be something bad, just may turn into a hidden benefit. I got this message just days ago. I believe it really speaks to this moment.

[Nam-myoho-renge-kyo is like the roar of a lion.]

What sickness can therefore be an obstacle?(*)

Chanting daimoku with a lion's roar,

let's obliterate the devil of sickness.

Don't be defeated under any circumstances.

(*)"Letter to Kyo'o, WND I, p. 412

So with a Lion's roar, I will not let this defeat me under any circumstances.

Nite!

Light and Love!

Melissa