Saturday, June 16, 2012

Top 9 Things I Learned from Cancer

So I just finished up my last touch up surgery a couple of weeks ago. There is always more I could do (so my plastic surgeon tells me), but I'm done. I'm done with the bruises, the general anesthesia, the using up of all my sick and vacation leave. I'm even done with my beloved Percocet. I'm just done.

People keep asking me if life is back to normal. I'm not sure what to say to that. No. My life is never going to be back to normal. I'm different. My family is different. My outlook on life is different. I have new passions and priorities. Cancer will never be gone. It will always be a part of me, and I'm glad for that. I still have my port. I'm going to hang it over my rear view mirror in my car to always remind me of how Cancer changed my life. I don't want to forget a single minute. To wind up my little adventure, I've listed the top 9 things I've learned from Cancer. (Yes, nine is all I could come up with.) I'm sorry that a chronic, life threatening illness was what it took to get these things into my head. Hopefully that won't be the case for you as well.

1. It is extremely difficult to apply mascara when you have only three eyelashes.

2. Considering the number of chemo patients out there, there is a definite market for electric pillowcases. Seriously. Someone could make a killing.

3. Pain and suffering is relative. There is always, ALWAYS someone worse off than you. Count your blessings every day.

4. Most people think that attitude is the number one thing that you need to make it through cancer treatment. They're wrong. It is denial. Clean out that dusty, broom closet in the back of your head. You're going to need it, and it will serve you better than a million "I'm going to beat this!" happy thoughts.

5. Don't assume that just because you have gone through something similar, that you are now an expert. Nothing made me want to rip the head off of someone more that a well meaning stranger that took one look at my scarf and said, "Cancer? Oh, yeah, I've been there, done that."

6. DOCTORS ARE NOT GODS! Their job is to help you determine what your treatment plan is going to consist of. If you have one that tries to lay it out for you without asking you what you think or how you feel about it or blows off any concerns you raise.... RUN.

7. Nurses are angels sent straight from heaven. All of them. Even crazy looking ones named Lorg who have have long, shaggy hair, a beard, and wear hot pink scrubs with little purple fairies all over them and insist on calling you "Madame."

8. Regardless of your beliefs, I don't care if you are Christian, Muslim, Hindu, or Atheist, we need one another. We have a responsibility to ourselves and the rest of the human race to do our best to relieve suffering wherever we can. Our neighbor's, friend's, co-worker's suffering should be our own. One of my favorite quotes is by George Eliot. She says, "What do we live for, if not to make life less difficult for each other?"

9. Cancer rates have literally skyrocketed in the last several decades. And that is in spite of the billions of dollars pouring into the Komen Foundation and other organizations that say they are dedicated to finding a "cure." If you think there is nothing you can do to protect yourself and your children, you're wrong. We need to all take responsibility for our health. No one else will.

Monday, December 19, 2011

Almost done!

The last two drains came out last Friday. I saved a couple of my last Percocets just for the occasion. It hurt like a bugger. I hate to imagine how it would have felt if I hadn't been just a little high.

I am more and more mobile every day. I still have a lot of healing to do, but most of it is superficial. Skin that didn't make it. So, the next, and final step (knock on wood), will be to have a skin graft or two, probably in the next few weeks, to fix that. I'm still pretty swollen too. This is probably a good thing. I was a little freaked out the first time I saw the new girls. They were just...  Let's see. How should I word this... Let's just say they were a lot less subtle than I was expecting. After almost three weeks the swelling has gone down significantly and should go down a little more so by the time it's done, they should be a little closer to what I was used to before the surgery.

Thanks to everyone, particularly my friends and neighbors from Church, for all the love, support, and food! My family has never eaten better.

Wednesday, December 14, 2011

Should this post be rated???

Just as an FYI, if you are a guy or just a casual acquaintance of mine, the following post may contain more information that you want. Just thought I'd warn you in advance. For myself, I'm beyond caring who knows the details.

Last Friday I had my first follow up with my plastic surgeon.  I had my surgeons do a skin and nipple/areola sparing surgery. This is when they make a small incision, remove all the breast tissue from inside the breast, but leave all the old skin, including the nipple and areola.What is probably more common is for them to remove the nipple and areola and all the breast tissue, but save the skin and at a later date, reconstruct the nipple and areola using skin taken from another part of your body.

Anyway, I probably shouldn't have asked them to save the nipple and areola. I don't think my plastic surgeon and/or my general surgeon had quite the experience or skill level necessary to do it sucessfully because I don't think they have done many of them before. When I was in the hospital, a couple of the nurses said that this was one of the first ones they'd seen. So... shame on me. I should have asked more questions, but oh well it's done. So now, the issue is that the nipple and portions of the skin around it have died because the circulation was compromised during surgery. So I have to goop on this cream three times a day to protect the wound until we know if there is going to be good skin that grows up underneath the dead skin or if I am going to need a skin graft. It's kind of nasty. I'm planning on a skin graft, probably some time in January.

Some good news is that of the four drains I had coming out of my body, we were able to remove two of them. They were longer than I expected. I only thought the tube extended an inch or so inside my body. Turns out, it was closer to about 6 to 8 inches and was curved up by my collar bone and around the top of each breast, ending around the sternum area. Of course, the two she removed were not the ones in the most uncomfortable locations, but it is still nicer to have half as many tubes and containers hanging from me constantly. The other two have just dropped to the maximum output of fluid in a 24 hour period (30 milliliters), so they should come out this Friday at my next appointment. (Unless I can find someone to take them out earlier.) I hate them. I have seriously considered taking them out myself. I watched her do the first two. It didn't look that difficult. Just snip the stitches and pull...  I think I'll feel tons better once they're gone. Not so much like an invalid. I should even be able to drive since I'm off the narcotics too. I'll have to win the battle with Neil on that one first though.

So that is the latest. A little closer to what I hope will be a little calmer life. I've had three crappy Thanksgivings, three crappy Christmases, and three crappy wedding anniversaries. I'm looking forward to being able to celebrate the holidays next year without having to deal with a horrific autoimmune disease, chemotherapy, or having just been taken apart and put back together.

Saturday, December 10, 2011

Surgery story

We got to the hospital (IMC) on Wednesday morning at 5:30, bright and early--and then sat in the waiting room for about an hour, waiting for our turn. (I will never understand this.) Once they actually let us back I got in my fashionable little hospital gown and they wheeled me into a little room where I met with everyone that was going to be attending my little party over the next 12 hours: general surgeon, plastic surgeon, anethstesiologist, surgical nurse, and someone else I've forgotten. We all talked about exactly what we were doing so everyone was on the same page. It was probably a good thing since the general surgeon was under the impression that we were only doing a single mastectomy when the plan was to do both.

After we got that clear, my plastic surgeon got out the sharpie and started marking me up. The fun part was when she drew the incision on my belly where they would be removing the tissue to build the new breasts. It went from hip to hip and it took it ALL.  I was quite excited about that part.

The next 12 hours are a little fuzzy. I don't even remember them taking me into the operating room or saying goodbye to Neil. I'll see if I can get Neil to fill in the blanks in a different post. The next thing I remember is someone calling my name and a stabbing pain in my right calf. I vaguely remember  being confused at the location of the pain and yelling, "Why does my leg hurt?" Apparently my leg had been lying on top of a small cord for 12 hours and had developed a huge knot in the calf muscle that was about 4 inches long. That was a little unexpected. So Neil spent the next little while trying to work the knot out of my leg.

The first 24 hours after I came out of surgery were spent in the Intensive Care Unit. They had to carefully monitor the transplanted tissue to make sure that circulation was well established. The plastic surgeon had to connect the dissected blood vessels in the tissue from my belly to the dissected blood vessels in the tissues in my chest. If the circulation wasn't good, then the tissue would die and we'd have to start all over again.

They checked the circulation by monitoring the color of the skin and poking me a lot. When you poke yourself, you normally see a white spot the size of your finger tip where you have pushed the blood out of the veins. After a second, it turns pink as the heart fills the veins with blood again. That shows good circulation. So I was constantly getting poked.

I also had four tubes coming from my body that were draining blood and body fluid from the surgical sites. Two were in my upper abdomen and two were in the lower abdomen. The nurses were constantly emptying these out. The fluids need to get below 30 ml per day before they can be removed.

After 24 hours, they moved me from ICU to a regular hospital room. I was hooked up to an drug pump that would give me a shot of some sort of narcotic once my pain level got too high. Over the last couple of years, I've learned to be a lot more tolerant of pain, but that doesn't mean that I won't do everything I can to avoid it, so I made sure to push that little button every time I thought of it. Fortunately for me, the machine is set so patients can't self administer too much drugs, but I still just thought I should make sure I was getting my money's worth.

I spent four nights in the hospital and as miserable as I was most of the time, I did notice that my pain levels were improving each day. Even that early on. The first time they had to move me to a different bed (when I left the ICU), I thought I was going to die. I had two nurses on either side of me and they just lifted me up in the sheet that I was lying on and slid me over to a different bed. That one hurt. I felt like someone had tried to cut me in half. Well, I guess with an incision from hip to hip, that wasn't too far from the truth. I wasn't feeling much from the chest area. Nerve endings had been severed so there wasn't a whole lot of sensation from that area. It was the tummy tuck that felt like it was going to kill me. But the next time they had to move me from the bed--when I got up to take a shower--it wasn't nearly as bad, so it got a little better each day.

So three more nights in the hospital and I was feeling well enough to come home. We left the hospital around 7 pm on Saturday night. One of my angel neices had taken my kids for the weekend so the house was quiet. It was nice. Neil, the genius that he is, set up the bed we just bought Lily so it bent just like a hospital bed. I had to have both upper body and legs elevated. It was quite the task to figure out how to make me comfortable while wearing a super, hot surgical bra--something that literally held me together from neck to belly button, a binder that was 8 inches wide and cinched around my hips as tight as they could get it to protect the incision on my belly, and 4 tubes protruding from some very inconvenient parts of my body, but he did it. I doped myself up with my old friend, Percocet, and slept like the dead.

Sunday, December 4, 2011

Doing the granny shuffle...

A couple of days before I went into surgery, I went to the store to find me a house coat. I knew I would have a few cords coming out of my body for a couple of weeks after surgery, so I needed something that I could either zip or button up in front. I came home, put it on, and showed Neil and then burst out laughing. It is exactly what my grandmother used to wear every day whenever I saw her. I have my very own "granny coat."

Neil found another one for me the next day that is a little more hip because it has a hoodie and little matching socks with a fur cuff. That's right. I'm one stylyin' little granny. But that's not all. I now have an incision about four times the width of my C-section scars. It is from hip to hip. Because I am not supposed to put any stress at all on that incision, my surgeon has told me that I need to walk hunched over for a few weeks.  Well, that causes some lower back pain issues, so we were able to borrow a walker from a friend of a friend (thank you, thank you!), and now the granny shuffle is complete. Granny house coat, furry socks, a hunched posture and a walker. Add the little shuffle and I am one sexy little granny librarian girl. I'm supposed to get out and do some laps around the cul-de-sac, so who knows, maybe some of you will be lucky enough to see me in action this week. If not, my mother has requested pictures. What the heck. I'll post them here once I get some taken.

More details about the surgery and hospital experience in a couple of days. For now, I am recovering somewhat comfortably at home. Thanks to everyone for all the prayers, support, food, babysitting, and healthy, happy vibes that have been sent my way. I'll keep you posted

Monday, November 28, 2011

Two days and counting...

Two days to surgery. I'm glad to finally be there. It won't happen exactly as I had planned, but this situation is a close second and I just want to get it done.

My surgery is on Wednesday, all day (12 hour surgery) at the Intermountain Medical Center in Murray, Utah. Their general number is 801.507.7000. I should be on the patient directory if anyone wants to check in. Or you can just call Neil's cell. That would probaby be better actually. I don't plan on being conscious for most of my stay there. (Finally, a decent nap!) I'll check in early Wednesday morning and probably be home by Saturday afternoon sometime.  Woohoo!

Sunday, November 6, 2011

It can only get better from here.

I went and saw my new surgeon on Friday. Her name is June Chen. She is really nice. It almost seemed like a formality. I've spent so much time in the last year reading about the procedure and talking with other doctors and cancer patients that I really didn't have any questions for her. I'm sure I just gave her the impression that I was more than just a little clueless, because after a while she looked at me and said, "Do you need some time to think all this over." I think she was a little surprised when I immediately answered back.  "No. I want this done by the end of the year. In fact, your assistant already has me pencilled in for a surgery date of November 30th."

At some point during the consultation she asked me why I wasn't going to stick with the surgeons at the Huntsman Cancer Hospital where I've received all my other treatment. I just said, "Because I've heard very good things about you." I have. When I started looking into surgeons, I came up with a list of top three. Massey was number one, she was number two, and I still have one backup. Though I'm really hoping I don't have to go there. I'm so tired of all this.

I did reach a new low that day though. I thought I lost all sense of dignity that day of my first breast MRI when I walked into the room and saw three big guys waiting for me. Well, when you compare that with standing in a small room in front of a total stranger with no clothes on, in my post-chemo, post-steroids, post-second worst year of my life body, while she snaps about 30 pictures with her digital camera... Well, let's just say, it wasn't the most ego boosting moment of my life.