It's been a while...

I was thinking back to the last time I felt semi  normal and it was November at thanksgiving that that happened. I am so greatful for that, what beautiful family memories I have.

This is going to be rambling so please bare with me ...or stop reading, doesn't matter.

It  occurs to me how incredibly important my family is to me. At this point my body is declining rapidly. I wouldn't say I'm on a death watch but everyday I'm a bit closer. If this new drug doesn't help I suppose hospice is the next step.

At this point I can't do much physically with out Jeffrey and or squatty's help. I can't get myself off the couch to use the bathroom (too much?). They have to physically lift to help me to the bathroom. Try to imagine that? Humiliating for me and them and yet neither of them complain. They are kind and compassionate to me an my heart is filled with pride and love and appreciation for them. I am an incredibley fortunate woman. My heart is filled.

Hope...my drug of choice.

I'm on day 4 in Johns Hopkins hospital. Tomorrow is Thanksgiving. I'm hosting. Ha! Tonight I'll have 15 people sleeping at my house. I was admitted late Sunday evening for dehydration and a severe headache. I started whole brain radiation on Tuesday, 11/15, and I have been vomiting every day up until yesterday. Steroids are the god of drugs. Sweet relief. I'm really hoping to be discharged today.

Hoping...hope, my drug of choice. When I get that first glimmer of feeling better I see hope peeking around the corner looking playful and calling to me.  It's irresistible. Maybe I'm not going to die soon, maybe I have another few months, maybe another year or two, maybe...? I will give anything to keep hope around me. Feed it what it wants, play with it, spend time telling it how much I love it, making it promises I probably can't keep....but I can't give up on hope. 

I am thankful for every minute that I am here.

This Body

This body!

As a child, this body ran and jumped and danced and twirled and swam and stretched and bent and grew, without any question. Without any fear.

As it got older it learned and worked and created and sustained and and moved forward and worked and worked and worked...

Then, this body made babies that grew inside of it, big and strong and healthy. It transformed and accommodated and stretched and nurtured and created and loved.

This body wiped away tears, cleaned up vomit, mended broken hearts, scrubbed toilets, folded laundry, helped with homework, walked the floors with worry, cooked dinner, washed dishes, volunteered in classrooms, went on field trips.

This body painted walls, replaced windows, remodeled kitchens, made pottery, planted flowers, pulled weeds, made a home.

This body loved, created a family, created a life. This body celebrated accomplishments and mourned losses.

This body has never let me down…..And then this body got breast cancer…and I am still amazed by this body. It has had deadly chemicals pumped into it and still it keeps on. It has had a breast amputated and still it keeps going. It has had radiation shot into it and devices inserted and removed and it has been worn down to the nub but every single day it gets back up and says “Is that all you've got?” “ cancer, you don't scare me.”

This body, without any questions, without any fear...

Side effects and mind games

On August 7 I started Xeloda, an oral chemotherapy. 3 pills in the morning with breakfast and three pills in the evening with dinner. On for two weeks and off for one. Shampoo, rinse, repeat...The list of possible side effects is as long as my arm. I'm not worried, because when I was having the chemo that required the infusion nurse to wear a special apron and a welder's mask in order to hook me up, my side effects were minimal. So, this will be a breeze! The first round went off without a hitch. No mouth sores, no nausea, no vomiting, no indigestion....I felt pretty good, maybe a little tired. I started round 2, went through a full week of 6 pills per day and still no side effects, maybe a little more tired, but none of the nasty stuff. Week 2 started well but by Tuesday evening I was reeeaaally tired and when I woke up on Wednesday and stepped out of bed I was convinced that I had stepped on some broken glass. I hobbled into the bathroom, still half asleep and confused as to how broken glass ended up on my bedroom floor. I expected to see a bloody mess of my feet but to my surprise there was no blood, no cuts, weird. The bottoms of my feet were red, like sunburn and very tender. I got my day started, hobbling around and by the time the last kids got on their bus my feet were peeling and blistering. As the day went on the skin on my thumbs started to split and peel and the palms of my hands felt like sand paper. It was scary how quickly it progressed. I called the infusion nurse and she told me to stop taking the chemo, use lots of moisturizers, drink lots of water and call back if it gets any worse, otherwise call back in a week and my doctor will likely make adjustments to my dosage. Thankfully my hands and feet started feeling better almost immediately. When I called back, as instructed, I was feeling almost completely back to normal other than one HUGE blister on my heel. I was instructed to take another week off from chemo. I will meet with my doctor on September 23 and we will discuss what the next move will be. Hopefully it will just be an adjustment to the dosing schedule and not a whole change of plans.

Now for the mind games. When I wasn't feeling any side effects from the chemo, my brain was saying "If I'm feeling this good the chemo must not be working." "I have to be feeling lousy in order to be fighting this cancer..." (I'm not saying this is rational or even healthy, these are just the games my head plays with me.) And, now that I've been off of the chemo for 2.5 weeks, my brain is saying "All of those cancer cells that were woozy from chemo are now regrouping and planning their attack to come back bigger and stronger."

I'm so much better when I'm distracted....Stay tuned!

I Believe...

I believe people are basically good. I believe love is stronger than hate. I believe strength is a surprising result of tragedy. I believe that every single one of us is far stronger than we know and capable of things of wonder and compassion.

The Story of the Unfulfilled Tissue Expander

Immediately following my mastectomy a tissue expander was put into my chest cavity where my murderous breast had lived. The plan was to heal from surgery, have radiation, heal from radiation and then start the process of expanding the area in preparation for an implant. Simple, right?

So with expander in place and sufficient time spent healing from the surgery I met with my radiation oncologist. At first he said that my expander needed to be filled before they could start radiation. So, my plastic surgeon was contacted and I went and had some saline pumped into my fledgling  expander:

           * There is a metal disc in the expander where the fill valve is. The doctor finds this by          dangling a magnet on a chain over the chest and wherever it attaches is where he pumps in the saline. I found this fascinating! I never tried this, but I often wanted to attach a note saying "Under Construction" to my chest with one of my refrigerator magnets. 

With as much saline injected into the expander as my skin would allow, (it ALMOST looked something like a breast) I went back to get the radiation ball rolling. After determining that there was a miscommunication somewhere (I'll take the blame because no one else is!) along the line I was told that there was too much saline in the expander and some would need to be removed....seriously!? So back to the Plastic Surgeon to have some of it sucked out!

Finally radiation could begin. Radiation IS NO FUN. but I'll address that in another post. I received 30 rounds of radiation and when I was done, I needed to heal for several weeks before I could begin to focus on reconstruction. Healing was slow and unpleasant but eventually my skin was healed enough to resume expansion.

I went for one expansion. 300 cc's of saline. It was beginning to look like a breast mound again. 3 weeks later I went for another fill up. Break out the trusty magnet to find the valve...the magnet is actually moving away from my body, kind of repelling my body...that's weird...try another magnet...repelling again. Huh! After lots of pushing and prodding, it is determined that my expander
has flipped over. Oh, sure, that probably happened when I was doing gymnastics (that's sarcasm for
anyone who doesn't know me well, I sit on the couch...especially at that point in my life)!

I would need to have a small surgery to flip my expander over. Oh joy! This would just be a quick surgery at a surgical center, not the hospital. I would just have a local and be awake for it, feeling nothing but hearing everything. Yick! I'll spare you the details but, I'll tell you, I've done more fun things in my life than that. Time to heal again and after several weeks I was ready to be expanded again. At my next appointment with my PS (Plastic Surgeon) he began filling, 100 cc's..."How does that feel?", "I don't know, I can't feel anything....haven't been able to feel anything in that area since my mastectomy." Another 100 cc's, "Doing ok?" "Sure? I can't feel anything." Third syringe, 100 cc's more....I'm not watching, because even though it doesn't hurt, I get a little wiggly in the stomach
watching the needle go into me. All of a sudden, "Sploosh!" And I hear liquid hit the floor. "What was that?" I asked. "The expander has been exposed." Said PS.

What the heck does that mean? Has my skin gotten too thin because of all the expanding, can you see through it now? What does that mean!? So, what really happened is that the incision sight split open and now I have a big hole in my chest in which you can actually see the expander. PS says that I am no longer a candidate for an implant. We will, instead, need to do a DIEP flap transplant and it will need to happen ASAP.

          *DIEP flap surgery is where they take skin, fat, nerves and blood vessels from your lower
abdomen and actually make a breast out of it. It is a big surgery. At least 8-10 hours and it involves microsurgery to attach the blood vessels and nerves. The bonus is, not only do you get a new breast, but you also get a tummy tuck. The down side is you could die, it could fail, your body could reject
it...

This surgery had to be scheduled right away. PS said it would be happening within the next few days. Major panic was going on in my head! I was sent home with an open hole in my chest and a piece of gauze shoved into my bra to cover it. They would be in touch with me very soon.  The next day when I woke up I was drenched in some kind of fluid. It wasn't blood but my chest was soaked and my expander was hanging out of my new chest pocket. I called PS to explain what was happening and to get advice on how to manage this, he wanted to see me the next day. OK. Next day: when I woke up I had a horrible pain in my chest, I was dizzy and nauseous. I had a terrible head ache and a fever. I had chills and I ached all over. I was quite certain that I would die that day. And, at that point, that was ok with me.

When we got to the PS the expander was almost completely out of my chest. PS pulled it out the rest of the way along with some of the most disgusting funk I've ever seen. I was septic. I could not have the DIEP flap surgery right now. The infection needed to treated and healed. But, in the mean time, I would need to have yet another surgery to clean out the pocket and close up the hole.

Surgery, antibiotics, healing...healing...healing. Then it was time for my 6 month check up with all of my doctors and that's when I found out that my cancer had spread and I was now stage IV.

There will be no reconstruction.

I feel fine?

Yeah. Stage IV breast cancer. This disease will either kill me or I'll die with it. Either way, it's mine for the rest of my forever. Funny thing is, I feel fine. Not that I'm complaining. It just seems incredible to me that I can have this deadly disease in me and not feel sick. As a matter of fact, I feel pretty good. Baffling. I just started taking Xeloda yesterday, though, so my feeling good could end soon...or...maybe not? Xeloda is chemotherapy taken orally, twice a day, on for two weeks, off for one week, for as long as it's effective. I'm also getting a monthly infusion (through the port in my chest) of Zometa. Zometa is a bone strengthening medicine similar to the type an osteoporosis patient would get. Since the cancer is in my bones I'm at a greater risk of fracturing my bones.

I'm grateful that I feel so well. I plan to take advantage of that for as long as I can.