I'm coming out, I want to world to know, Got to let it show

I got my Groshong taken out!!!!

The Diana Ross song keeps on playing in my head whenever I think about my Groshong catheter. I'm pretty bruised, but I feel so free. I even got teary eyed during my first normal shower. It's the little things that you miss the most.

So I'll quickly explain how it went down. I got to the surgery clinic and the nurse escorted me into my room. She was explaining how they were going to make an incision and I would need stitches. I said, "STITCHES?!? Can't you just pull the sucker out of the hole that's already there? Why do you need to make an incision?" The nurse reassured me that it was going to be a tiny incision and would only require a few stitches. Butterflies in my tummy started doing flips at this point. (Plus I read the Lance Armstrong book and he had a horrible experience with his Groshong removal.) Turns out I was mistakenly scheduled for a port-a-cath removal which is a different line that is placed beneath your skin. Luckily that got cleared up as soon as the surgeon took one look at my Groshong.

I laid on the bed as the surgeon gave me shots of local anesthesia so the area would be numb. It felt like I was getting stung by tiny bees.

The surgeon felt around to see how far the "cuff" was in my vein and she said that she could feel it close to the exit site. The cuff is basically a donut-like stopper around a part of the tube that's underneath my skin. The cuff ensures that the tube doesn't accidentally slip out of the incision point on my chest. Since I had the tube for almost a whole year the surgeon suspected that my tissue fibers had attached themselves to the tube. She said this might make it hard to pull the tube out. That was an understatement.

She removed the stitches and then started to tug on the tube. For some people, all it takes is a tug and the tube slips out. For Michelle Maykin, the surgeon had to yank, yank, YANK. She even made the incision point wider with a scalpel a few times. I felt like I was fish on a hook because every time she pulled the tube my whole body was lifted from the table. Luckily I felt very little pain, but it seemed like it was taking forever with no progress. That sucker would not budge. Midway through, I even asked the nurse to hold my hand because it was freaking me out a little bit. After 10+ tries the cuff finally came out and the rest of the tube slipped out easily.

It was a pretty surreal experience to be awake while the procedure was taking place. If I had to do that again (knock on wood)...I would definitely opt for more drugs so I'm not as alert. Boy am I glad it's over. Now I have just a few war wounds (scars) that remind me of my battle with Leuk instead of an entire foot long tube dangling out of my chest. I feel so free.... fantastically liberating.


I asked the surgeon if I could keep the tube, but she said that I couldn't have it because it was deemed "hazardous." I thought, "Um..hello?? It's been in my chest for the last year...if it hasn't harmed me yet...I doubt it could be hazardous to me now." She still didn't want to give it to me but she gave me a consolation prize by letting me take a picture of it with my camera phone. The red blob is the cuff. The end of the tube to the cuff is the part that was inside my vein. From the cuff to the two blue caps is the part that was outside of my chest.

Hopeful

Last week I got an email from Chi Hang that she has found a cord blood match and will be receiving a bone marrow transplant soon. Such great news!!!!

Chi Hang has been doing weekly Vietnamese radio talk shows with my mom to share her story and educate people about leukemia, the marrow registry and bone marrow transplants. Unfortunately she does not have the luxury of leaving the hospital to go on air so she does the interviews in her hospital room. You can even hear the chemo machines that she's connected to beeping in the background. She is an inspiration to me.

The road ahead will be very challenging for Chi Hang, but I am optimistic that she will fight through it with the support of her loving family and friends. I will try to keep everyone posted on her treatment.

Chi Hang, you will be in my thoughts and prayers.

Final Dressing Change and Blood Draw

I get the bandages on my Groshong catheter changed once a week to prevent infections. Even though it's been almost a year since the tube was first put in, the area still stings when the nurses use alcohol swabs to clean it. There are stitches that keep the tube in place which means the area still feels like an open wound.

(For patients reading this, I've learned that some hospitals, e.g. SF Kaiser, take out the stitches a few weeks after the catheter is placed, but other hospitals, e.g. Walnut Creek Kaiser, prefer to leave the stitches in until the catheter is removed. SF says that the stitches increase the risk of bacterial infections. WC says that the stitches ensure that the tube doesn't slip out. I opted to keep the stitches in even though the SF nurses have asked me numerous times to take the stitches out. I figure that I should just stick to the protocol at Walnut Creek since that's where I received chemo treatment. Geez, wouldn't it be nice if all of these Kaiser hospitals had the same protocols and procedures??)

I used to hate dressing changes because it would hurt when the bandages were being pulled off, but I'm used to it now and I usually peel off the bandages myself (it hurts less when you do it yourself). It still creeps me out to look at the tube dangling from my chest when the bandages are removed, but I've definitely gotten use to the sight.

I had my very last dressing change last Wednesday and I also got a blood test done just to make sure everything is normal because tomorrow I have an appointment with Surgery to remove the catheter. My white blood cells are going up to normal levels now (4.5 to be exact). I am very excited because it feels like the Groshong removal is the final part of my treatment.

The nurses at all of the infusion clinics (Walnut Creek, Martinez, San Francisco, and Fremont) have been so sweet, supportive, and accomodating. They always manage to squeeze me into their busy schedule. I'm going to miss coming to them for my weekly blood draws. Once I get the catheter removed I'll go to the injection clinic to get blood draws through my arms once a month. Unfortunately, I have small veins so they might have to prick me multiple times, but I think it's a fair price to pay to be able to take a regular shower and hit the pool again. Woo hoo!

Match Maykin

If you have been following my journey you will know that I am currently not a candidate for a bone marrow transplant because I have a "favorable" Leukemia type - Subtype M2 with a 8:21 translocation. (The word "favorable" never sounds right to me...how can any cancer be favorable??? :P) The Stanford University bone marrow transplant doctor said that I have a 50% chance that I will be cured with chemotherapy alone. The doctors say that 50% cure rate is pretty good.

Since I am not a candidate for a BMT the only way I can see if I have a match is to use a tool on the National Marrow Donor Program website to do a preliminary search. It is not the most accurate information, but it gives patients a good idea of what's currently in the database. Normally doctors will look at 10 HLA markers, but the website only searches 6 markers. (The more markers that match, the less likely your body will reject the transplant.)

Here are my results for today:

NMDP Registry Potential Adult Donors:

* Potential matches at 6 of 6 HLA markers: 0
* Potential matches at 5 of 6 HLA markers: 497

NMDP Registry Potential Cord Blood Units:

* Potential matches at 6 of 6 HLA markers: 0
* Potential matches at 5 of 6 HLA markers: 5
* Potential matches at 4 of 6 HLA markers: 169

As you can see, I don't have an exact match on the US registry. However, when I started using this tool, I only had 460 matches with 5 of 6 markers.....so it's nice to see that the database has gotten bigger and now there are 497 people that match 5 out of 6 markers. (Some patients will get a transplant from a 5 of 6 match when the doctors are desperate and there is not much time left). The cord blood registry is made up of people who have donated their babies umbilical cord blood. There are stem cells in the cord that is normally discarded after the delivery. Many patients who do not have a donor match will get a transplant using umbilical cord.

Pretty interesting stuff huh? I can't imagine what it will be like when I do a search and see that I have a 6 of 6 potential match. Can't wait for the day. Cross your fingers!

How'd you catch Leukemia?

I do not blame myself for getting Leukemia. I am one of the healthiest people I know. I don't smoke, drink, use drugs or do anything that would put me at risk for getting cancer. I rarely eat fast food. I'm not a fan of fatty steaks. I like my vegetables and fruits. I take my daily vitamins.

I guess if I look at all of my friends and family, it's probably best that I was the lucky one that caught the L-bug because my body is in great shape to handle the beast that is chemotherapy.

So it's always funny/frustrating to me when people lecture me on how I got Leukemia. Here's a few things that I've heard:
1. You spend too much time in front of your laptop at work and the computer waves mutated your stem cells.
2. You stress too much.
3. You lived near a refinery when you were growing up.
4. You went to Tahoe and it was too cold which caused your body to produce cancer.
5. You don't eat enough beets.

I'm sure other patients hear possible causes like these too, but I hope no one internalizes them. That would really suck if I started feeling like it was my fault and I could have prevented this from happening to me. The way I've come to accept Leukemia is that it just occurred randomly. One poor stem cell got confused on how to make a normal blood cell. It made a mistake and started making cancer cells because it read the instructions wrong. That teeny tiny mistake led to my debacle of 2007. That pretty much sums it up for me. I am not going to beat myself up over how this happened.