Tuesday, August 23, 2016
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.
Saturday, August 20, 2016
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.
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.
Tuesday, August 9, 2016
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.
I'm grateful that I feel so well. I plan to take advantage of that for as long as I can.
Tests and treatment plans.
Mammograms, sonograms, EKG, PET scans, CT scans, blood work, genetic testing...so much investigating to come to this diagnosis: 174.9 Malignant neoplasm of breast (female), unspecified site, diagnosed Dec 10, 2014 (Active) Stage IIIC, T3, N3, M0, G3.
STAGE III??!! What? What about stage two...very treatable? Stage III, shit, that changes things...the only saving grace was "M0", no metastasis. Let's pump me full of chemo, get rid of the breast and the lymph nodes, zap me with some radiation and I'll be good as new...sort of.
I won't bore you with all the details and I don't mean to gloss over it, because it was no fun, but it had to be done, so I did it and not much of anything else, for quite a while. I had LOTS of chemo, 16 rounds. I had a right modified radical mastectomy with axillary reverse mapping. I had a tissue expander put in place for future reconstruction. I had 30 rounds of radiation. And in January 2016, at my six month follow up, my doctors said. Congratulations, you can say you are cancer free...
But I was skeptical. I knew there were two lymph nodes that were cancerous that could not be removed. I needed to know that the chemo and radiation did their job and obliterated those nasty little nodes...I asked for a PET scan. I was accommodated. The two spots were gone; good news! But there were two new spots, one on the base of my spine and one near my lung. The standard philosophy is to "watch" these spots. My doctor wanted to wait until June and do another PET scan. He said he was fairly certain that the spot at the base of my spine was arthritis and the one near my lung might be an
infection or inflammation...or cancer. I wanted a biopsy. I was not accommodated. It would be too
invasive and it's just a tiny spot. PLEASE! I have been so invaded thus far, what's a little more invasion? So my doctor and I agreed that rather than wait the 6 months for another PET scan I would have a CT scan in 6 weeks...ok, I can deal with that. The CT scan showed the same two little spots, no change, not bigger, not smaller, not gone. Biopsy, please?? No. We'll schedule a Pet scan in 6 weeks. Even if it is cancer the treatment would be an aromatase inhibitor talked daily...I was already doing that.
6 weeks later, PET scan: MULTIPLE sclerotic skeletal metastases. Enlarged mediastinal and hilar nodes.
Stage IV breast cancer.
STAGE III??!! What? What about stage two...very treatable? Stage III, shit, that changes things...the only saving grace was "M0", no metastasis. Let's pump me full of chemo, get rid of the breast and the lymph nodes, zap me with some radiation and I'll be good as new...sort of.
I won't bore you with all the details and I don't mean to gloss over it, because it was no fun, but it had to be done, so I did it and not much of anything else, for quite a while. I had LOTS of chemo, 16 rounds. I had a right modified radical mastectomy with axillary reverse mapping. I had a tissue expander put in place for future reconstruction. I had 30 rounds of radiation. And in January 2016, at my six month follow up, my doctors said. Congratulations, you can say you are cancer free...
But I was skeptical. I knew there were two lymph nodes that were cancerous that could not be removed. I needed to know that the chemo and radiation did their job and obliterated those nasty little nodes...I asked for a PET scan. I was accommodated. The two spots were gone; good news! But there were two new spots, one on the base of my spine and one near my lung. The standard philosophy is to "watch" these spots. My doctor wanted to wait until June and do another PET scan. He said he was fairly certain that the spot at the base of my spine was arthritis and the one near my lung might be an
infection or inflammation...or cancer. I wanted a biopsy. I was not accommodated. It would be too
invasive and it's just a tiny spot. PLEASE! I have been so invaded thus far, what's a little more invasion? So my doctor and I agreed that rather than wait the 6 months for another PET scan I would have a CT scan in 6 weeks...ok, I can deal with that. The CT scan showed the same two little spots, no change, not bigger, not smaller, not gone. Biopsy, please?? No. We'll schedule a Pet scan in 6 weeks. Even if it is cancer the treatment would be an aromatase inhibitor talked daily...I was already doing that.
6 weeks later, PET scan: MULTIPLE sclerotic skeletal metastases. Enlarged mediastinal and hilar nodes.
Stage IV breast cancer.
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