Ports

This post is going to be pretty graphic with pictures of post surgery and an exposed port-a-cath so if your squeamish you may want to skip this one.

As soon as I was diagnosed I had to get a port  put in. A port is a circular disk that goes under your skin in either your chest or on your arm. There is a catheter that is fed to your heart. Chemo is extremely damaging to your veins, this prevents the extent of that damage. The coolest part of a port is you can get it put in and then go straight to chemo that day.

They prefer to put it in the chest, just below the clavicle. My lymph nodes were so abundant and so swollen that I had to get mine in my arm. They wouldn't have been able to feed the catheter between the nodes. This is not ideal, because it goes on the inside of your arm which is sweaty and dirtier than your chest, as well as hard not to overuse.

It is an outpatient and awake procedure. I went to the hospital early in the morning and was headed up about 5 hours later. The actual surgery takes about 45 minutes; most of the time I spent in the hospital was just waiting for my turn. They kept me afterwards for about 30 minutes to make sure I didn't have any negative side effects from the drugs.

When it was time to get started they took me back to the operating room. The surgeon spent a while talking to me while doing an ultrasound of my arm and chest to find the best vein to go with.  Finally, I  was given a sedative. The drug is supposed to make you go in and out of sleep. I was told I wouldn't know what was happening, that I would hear them talking, but not remember any of it afterwards. However, because I'm apparently not one of the lucky ones who gets loopy easily, I was awake and aware through the whole thing. The nurse who was in charge of me did ask if she could give me more. It worked for about 5 minutes and I was back to being wide awake. It wasn't that bad being awake, just kind of freaky knowing that you are being cut open. They do cover your head with a tarp type thing so you don't see anything. Good thing I'm not claustrophobic. Afterwards, I was just sore. It wasn't all that painful at all.

This is right after surgery

I had to keep that bandage on until my first chemo, 3 days later. When it was taken off I had a lovely bruise that was quite impressive.

The steri strips stayed on for about 3 weeks

After the steri strips came off.

About a month after getting it put in I ended up with an infection. I had to keep my arm wrapped up because of work, which caused a lot of problems. A stitch popped out and it was leaking wet stuff. ICK!!! I was put on antibiotics and had to keep a close eye on it for awhile.

I was pretty careless with it. I am stubborn so I was hell bent on still doing all the lifting at work that I wasn't supposed to. I way over used it. It is hard not to when it's in your arm. About a month and a half after the infection I got the lovely surprise of unwrapping it after work one day and finding my port pretty much hanging out of my arm. 

Initiate panic mode!

I literally had a hole in my arm. I had had a scab for awhile, but it had come off and left grossness in its wake.

Did I mention it was gross?!?!

The next day I was headed back into surgery. Yippie! This time it was put in my chest which is awesome!

They did the removal and the replacement at the same time. The surgeon and the nurses couldn't get over my arm. They had never seen anything like that happen before, at least not to that extent. 

I was a lot less nervous going into this surgery than the first time. Thinking that since I had done it once before, I knew what to expect. Oi, was I wrong! This time was sooo much worse. The numbing shots hurt more than they ever had before. Also, I could feel them feeding the catheter. It was all around unpleasant. Oh, and the sedative did diddly squat. They didn't give me extra even though it was a longer surgery. The only time I felt the sedative was for a few minutes after it was pushed through my IV. I was shaking so badly, I don't know how they were able to do anything. The removal of the one in my arm was painful. I could feel him cutting away the skin and sewing it shut. Next time, I'm definitely going to need more sedative! 

The best part was that I got an copy of my xray of my Power Port. It kind of makes the whole experience worth it ;)

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1/16/13 to 7/17/13

46 Veils of blood

3 PET Scans

3 CT Scans

7 IVs

3 Surgeries

9 Chemos

8 Neulasta Shots

Guilt

Something you don't hear a lot about when it comes to cancer and other serious illnesses is the internal turmoil it can brew up inside of you. Logically, it makes no sense to feel bad about it - you didn't choose for it to happen to you - you didn't choose to put your family through it - so why feel bad?

Guilt is a funny thing. It has a way of sneaking up on you unjustifiably and sinking it's dirty fangs into your conscience and sub-conscience mind. It can consume you before you even realize it's there.

First, I felt guilty for going to the doctor and having all these expensive tests done. That guilt was short lived and was gone as soon as we learned something serious was going on. 

It hit me really hard when I started missing work. In the 2 years I was at my job before this happened, I called in once and it was when I was pregnant and my doctor told me to spend a day in bed. I  am so stubborn and feel the need to carry my own weight and not let people down that I worked for the week and a half that I was put on bed rest. Missing work has never been an option for me. I was raised that way - if you take on a responsibility then you see it through. So, much to my horror, I had to call in a lot due to PET scans that require being a vegetable for 24 hours in advance, surgeries and their recovery time, chemos and their recovery times, and doctors appointments. I am a people pleaser and I don't like making people have to work around my schedule. Of course everyone at work was understanding and never said or did anything to make me feel bad - tease me about taking so many vacations, but never anything serious. When I finally switched from intermittent leave to continuous, I cried. I felt awful. I didn't want to do it even though I knew it was necessary. I've been gone since the end of May and I'm still feeling kind of rotten about making them deal with covering my shift. I am learning to live with that though. I don't feel nearly as bad as I did at the beginning.

The guilt I feel for what it does to my family is by far the most overbearing sense of guilt I have ever felt. The stress it puts on Craig is beyond unfair. He has stepped up and has taken care of not only me, but Oliver and pretty much everything financial (now if only he could learn to fold laundry and clean a toilet hehe). The further I venture into this cancer journey the more time I spend in bed. This means the more I miss out on Oliver's day-to-day. There was solid 2 months where I spent all my time at work or in bed. Oliver would come to my door and I'd hear knock knock then his little voice yell "mama!" He wouldn't even have to see me go in there, he would just know I was there. He would want me to pick him up and play with him, but because of the surgeries he would only be allowed to cuddle until he got too excited and had to be kicked out. One great thing about having gone on LOA is that I now get to see him for a solid 5 hours between waking up and when Craig gets home. He and I are much happier with that arrangement! Plus there is seeing my parents have to deal with a child who has cancer and knowing that it makes my sister upset when I tell her when chemo makes me throw up. Those are guilts I don't have to come face-to-face with daily so they are easier to ignore (sorry guys!).

I get gut wrenching remorse thinking of other cancer patients - of any kind - who haven't been as lucky as me. I get a physical ache when I think about those who have to fight harder than me, who have worse reactions to the medications, who have to have surgery after surgery, those who don't win their fight and whose families have to watch it all happen. Nobody controls who gets sick, how serious it is, and who makes it, so why am I "lucky"? Why do I get off so easily? What makes me different from a little kid who doesn't get a chance to live cancer-free? I don't know any of these answers, but I do know that we need to figure it out. I almost consider this one a good guilt because it is what I plan on using to propel me in my philanthropy.

There is actually a lot of other things I feel bad about, but do I really need to go into detail about my full head of hair, staying up too late to read (or blog) and the pile of laundry I keep saying I'll get to tomorrow?

I get my PET scan results tomorrow so keep your fingers crossed for good news :)

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1/16/13 to 7/4/13

42 veils of blood
3 PET Scans
3CT Scans
7 IVs
3 Surgeries
8 Chemos
7 Neulasta shots