HALLELUJA! HALLELUIA! and YEA!
We have skin closure! Yes, it's scaly, bumpy and red, but for the first time since September 11th, I'm leak-free.
I have been hesitant to say anything, but my mom and Scott have confirmed it for me. Thank you for all your continued prayers - hope it will stick this time!
Thursday, January 31, 2008
Wednesday, January 30, 2008
January 30 1/2 - Massage
I had my second free massage offered by the Breast Care Center last night. Great stuff!
This massage therapist, Tracy, has unique credentials. Aside from the national certifications, she is a breast cancer survivor who had a bilateral mastectomy in 2003 and reconstruction first with saline, then silicone implants. So she has lots of experience with scar maturation and chest cavity mobilization.
We compared stories and shirtless profiles. She showed me several specific stretches and mobilized the pec muscles that are wrapped around my tissue expanders.
I thought massage would be really relaxing and I'd flop to the car like a wet noodle. The reality is that it is more of a therapeutic energy release. My whole body feels more awake and thirsty and ready for whatever is next on the agenda.
I plan to continue these treatments every other week as long as it's needed and I can afford it; the next session is the last freebie.
This massage therapist, Tracy, has unique credentials. Aside from the national certifications, she is a breast cancer survivor who had a bilateral mastectomy in 2003 and reconstruction first with saline, then silicone implants. So she has lots of experience with scar maturation and chest cavity mobilization.
We compared stories and shirtless profiles. She showed me several specific stretches and mobilized the pec muscles that are wrapped around my tissue expanders.
I thought massage would be really relaxing and I'd flop to the car like a wet noodle. The reality is that it is more of a therapeutic energy release. My whole body feels more awake and thirsty and ready for whatever is next on the agenda.
I plan to continue these treatments every other week as long as it's needed and I can afford it; the next session is the last freebie.
January 30 - My Wound Care Still Life
For Jami. Although I was tempted to be more graphic and will pretty much pull up my shirt for anyone these days, I thought I'd spare you all the gory visuals.
Saturday, January 26, 2008
January 26, 2008 - I'm Proud
It's been a while since I've posted, and I've been wanting to. But somehow when it comes down to it, I don't seem to have anything to say. Weird, huh? Melisa's been so good about keeping everyone updated, and I've been back to dealing with normal life stuff. But it isn't normal. Things are definitely different now.
It's been four months since Mel's surgery, yet she's still dealing with wounds. You'd think she'd have other things to worry about by now, like picking out new bras or nipple shopping. But crap happens, and unfortunately it's happening to her right now.
Having a wound sucks. Having an open wound for four months SUCKS! She still has to deal with showering without getting wet, daily wound cleaning and bandaging, A-Frame hugs and half-filled plastic containers in her chestal cavity.
Obviously she's going through a lot. But if you didn't know about it, you'd never be able to tell. She's back to working a full schedule - Wife, Mom and PT. She's strong. She's happy. And she's kicking butt at life. I'm proud of her.
It's been four months since Mel's surgery, yet she's still dealing with wounds. You'd think she'd have other things to worry about by now, like picking out new bras or nipple shopping. But crap happens, and unfortunately it's happening to her right now.
Having a wound sucks. Having an open wound for four months SUCKS! She still has to deal with showering without getting wet, daily wound cleaning and bandaging, A-Frame hugs and half-filled plastic containers in her chestal cavity.
Obviously she's going through a lot. But if you didn't know about it, you'd never be able to tell. She's back to working a full schedule - Wife, Mom and PT. She's strong. She's happy. And she's kicking butt at life. I'm proud of her.
Thursday, January 24, 2008
January 25 - Case Management?
Grrr. The insurance game is tricky. Right before Christmas, I got a letter from Meritain Insurance saying they reviewed the charges and need more information about the "accidental injury". They turned the case over to another company for review, and are looking to pursue outside payors for treatment needed because of someone else's mistake.
They did not specify which treatment was in question, but the dates they provided only match the wound care center stuff. I wrote back that this was related to a delay in healing of surgical wounds which were created on purpose by skilled physicians with insurance preapproval. (Thinking in my head: "Sure, dealing with wounds 4 months after surgery isn't ideal, but I don't think anyone has been negligent. Sometimes crap happens.")
Then last week they sent a short form - no envelope, no return address - with checkboxes: Did the injury occur at work? Was the injury related to an auto accident? If not, where did it occur and why? "Please return this for ASAP to prevent possible delays in future payment."
What?! I called my nurse case-manager at Meritain. She didn't know what was up but recommended I send back the form. I hope that will be enough. I hope they pay these people, or it's $1000/month out of my pocket for my weekly visit to Christine.
They did not specify which treatment was in question, but the dates they provided only match the wound care center stuff. I wrote back that this was related to a delay in healing of surgical wounds which were created on purpose by skilled physicians with insurance preapproval. (Thinking in my head: "Sure, dealing with wounds 4 months after surgery isn't ideal, but I don't think anyone has been negligent. Sometimes crap happens.")
Then last week they sent a short form - no envelope, no return address - with checkboxes: Did the injury occur at work? Was the injury related to an auto accident? If not, where did it occur and why? "Please return this for ASAP to prevent possible delays in future payment."
What?! I called my nurse case-manager at Meritain. She didn't know what was up but recommended I send back the form. I hope that will be enough. I hope they pay these people, or it's $1000/month out of my pocket for my weekly visit to Christine.
January 24 - A Present
I intended to post this appropriately right after Christmas - but didn't learn how to download the pictures to the computer until a few days ago. Ha!
Anyway, now I can visually document and illustrate my progress with my very own new digital camera - theoretically. I just need longer arms so I can get a wider angle (:
Saturday, January 19, 2008
January 18 - I don't even jog
You know what it feels like when you're out of shape and you run uphill and your sides cramp and it feels like your diaphragm is ripping off your ribcage? Apparently post-mastectomy scar tissue formation mimics side stitches. Even gentle hugs are uncomfortable today.
I mentioned everything seems to hurt more to Dr. Shulman. She just shrugged. "Yep. That's the scars tightening up and the nerve regrowth." I was kind of hoping for more Percocet to get through the nights; I'm saving my last 5 for an emergency. I guess I'll make do with Tylenol and Benadryl.
She also said, "Well (the wounds) look just the same." She decided to switch back to the original plan from 4 months ago: 2x a day Silvadene paste. Messy.
I mentioned everything seems to hurt more to Dr. Shulman. She just shrugged. "Yep. That's the scars tightening up and the nerve regrowth." I was kind of hoping for more Percocet to get through the nights; I'm saving my last 5 for an emergency. I guess I'll make do with Tylenol and Benadryl.
She also said, "Well (the wounds) look just the same." She decided to switch back to the original plan from 4 months ago: 2x a day Silvadene paste. Messy.
Tuesday, January 15, 2008
January 15 - Turf wars
OK, maybe "wars" is a little strong, but I'm pretty sure I stepped on some toes.
With the continued non-healing wound frustration, my co-workers suggested I talk to our home care wound nurse. She's new, having started with us while I was off in September, but she has years of experience and strikes me as an "old school" gal. Strict, no-nonsense, smart... intimidating.
But, since I'll bare my chest to anyone these days, and nothing else feels like it's working, I thought I'd ask her for help. She promptly tossed out a couple of theories, took a look, revised her ideas and said she'd get something out of her car. Before I knew what was up, she had pulled some things together and had a new concoction applied to me.
Good news: she offered to change the dressings for me any time and I can shower with them on and they stay in place for several days. Yea!
Not so good news: I suddenly felt guilty that I was bypassing the wound care expert I've been working with for 3 months (at $1000/month!).
So I promptly called Christine to fill her in on the new regime. She was not happy, but knows patients rarely follow directions or do what's best for them. I'll see her Thursday and I'm praying for miraculous results.
I also left a message for Dr. Shulman. She called me back and left me her cell phone number (I may store that in my phone). When we finally caught up with each other, she ran through a couple ideas - none of which I liked. First of all she said she's never had this happen with a patient before. She said we could (a) continue the antibiotics, (b) remove some fluid from the expanders, (c) change dressing types/procedures and/or (d) surgically re-open everything and try to close is back up again.
I don't like any of those options. (a) the skin was falling off after being on antibiotics for 1 1/2 weeks, (b) there's plenty of gush and skin mobility - it's not that tight, (c) already trying that, (d) ummm - isn't that what started this in the first place? I shared my opinion with Dr. Shulman.
Scott also pointed out I'm not having trouble healing from anything else - paper cuts, bruised knees, hangnails. So Dr. Shulman thought the healing delay may be related to the Alloderm grafts - that is, cadaver dermis that she uses to hold the tissue expander in place to create a reasonably boob-like shape. She says it takes about 6 months to fully vascularize through the Alloderm, and so the blood supply just may not be strong enough to support epithelial growth. Weird since the blood drips down my stomach whenever the dressings are off, but it's the best idea we've got.
I guess that means we're in a holding pattern for at least another 6 weeks. If nothing changes by then, she'll probably resect the open area and try to stitch it back together.
With the continued non-healing wound frustration, my co-workers suggested I talk to our home care wound nurse. She's new, having started with us while I was off in September, but she has years of experience and strikes me as an "old school" gal. Strict, no-nonsense, smart... intimidating.
But, since I'll bare my chest to anyone these days, and nothing else feels like it's working, I thought I'd ask her for help. She promptly tossed out a couple of theories, took a look, revised her ideas and said she'd get something out of her car. Before I knew what was up, she had pulled some things together and had a new concoction applied to me.
Good news: she offered to change the dressings for me any time and I can shower with them on and they stay in place for several days. Yea!
Not so good news: I suddenly felt guilty that I was bypassing the wound care expert I've been working with for 3 months (at $1000/month!).
So I promptly called Christine to fill her in on the new regime. She was not happy, but knows patients rarely follow directions or do what's best for them. I'll see her Thursday and I'm praying for miraculous results.
I also left a message for Dr. Shulman. She called me back and left me her cell phone number (I may store that in my phone). When we finally caught up with each other, she ran through a couple ideas - none of which I liked. First of all she said she's never had this happen with a patient before. She said we could (a) continue the antibiotics, (b) remove some fluid from the expanders, (c) change dressing types/procedures and/or (d) surgically re-open everything and try to close is back up again.
I don't like any of those options. (a) the skin was falling off after being on antibiotics for 1 1/2 weeks, (b) there's plenty of gush and skin mobility - it's not that tight, (c) already trying that, (d) ummm - isn't that what started this in the first place? I shared my opinion with Dr. Shulman.
Scott also pointed out I'm not having trouble healing from anything else - paper cuts, bruised knees, hangnails. So Dr. Shulman thought the healing delay may be related to the Alloderm grafts - that is, cadaver dermis that she uses to hold the tissue expander in place to create a reasonably boob-like shape. She says it takes about 6 months to fully vascularize through the Alloderm, and so the blood supply just may not be strong enough to support epithelial growth. Weird since the blood drips down my stomach whenever the dressings are off, but it's the best idea we've got.
I guess that means we're in a holding pattern for at least another 6 weeks. If nothing changes by then, she'll probably resect the open area and try to stitch it back together.
Thursday, January 10, 2008
January 10 - Update
The right side is tentatively closed with thin pink skin. The left side is still yuck.
Christine, the wound therapist, said a special "HEAL!" exclamatory prayer over my chest today. That was a little weird, but totally understandable. See, I'm not the only one who's frustrated.
Christine, the wound therapist, said a special "HEAL!" exclamatory prayer over my chest today. That was a little weird, but totally understandable. See, I'm not the only one who's frustrated.
Monday, January 7, 2008
January 4 - Aaargh!
Crap!
The wound therapist said I could probably change the dressings every other day, but check just in case... especially the right side which is still about thumbnail sized. So today I checked, and the skin on the left side just wiped right off with the non-stick dressing. What the hell?!
Being a Saturday, there are no other professionals available for consult (short of paging the on-call doc who has never seen me before). I made a semi-educated decision and switched back to the old dressing plan. Good thing I have extra supplies!
I have returned to half-backbends, trying not to drip blood on the bathroom carpet, while I trim and tape multiple layers over what should be nipples. Damn.
The wound therapist said I could probably change the dressings every other day, but check just in case... especially the right side which is still about thumbnail sized. So today I checked, and the skin on the left side just wiped right off with the non-stick dressing. What the hell?!
Being a Saturday, there are no other professionals available for consult (short of paging the on-call doc who has never seen me before). I made a semi-educated decision and switched back to the old dressing plan. Good thing I have extra supplies!
I have returned to half-backbends, trying not to drip blood on the bathroom carpet, while I trim and tape multiple layers over what should be nipples. Damn.
January 3 - Progress
Wound care center and Dr. Shulman today. Both are encouraging - yea!
The left side is nearly closed with a few rough spots and the right is much smaller. The skin seems to be sticking this time - finally. She changed the dressing regime to just antibiotic ointment with daily changes. A little more work for me, but I'm up for whatever works.
Dr. Shulman hopes to re-start the reconstruction process with half-fills in a couple of months. She wants to let the scar mature and fade before stretching everything out again. She also admitted that nerve regrowth with weird stabbing shocking random pains will continue for at least the next two years. I know this from my own clinical training, and it was actually good to hear the truth from a doctor. She's upbeat, but realistic.
The left side is nearly closed with a few rough spots and the right is much smaller. The skin seems to be sticking this time - finally. She changed the dressing regime to just antibiotic ointment with daily changes. A little more work for me, but I'm up for whatever works.
Dr. Shulman hopes to re-start the reconstruction process with half-fills in a couple of months. She wants to let the scar mature and fade before stretching everything out again. She also admitted that nerve regrowth with weird stabbing shocking random pains will continue for at least the next two years. I know this from my own clinical training, and it was actually good to hear the truth from a doctor. She's upbeat, but realistic.
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