sasha's window

i should be home today,

2009-07-01T09:28:00.003-08:00

but, i've got one more week. i'm set to return home on wednesday, july 8th after having a two week surgery follow-up in seattle on tuesday, july 7th.

i went to seattle last tuesday for my 4th surgery since april. it was supposed to have been a skin graft to close up the wound on my right breast flap. i wore the wound vac for about 6 weeks and the wound actually made so much progress that a skin graft didn't end up being necessary. this was really great news. though a skin graft is not a huge deal, it would have meant two new wound sites and a few weeks of healing. it would have been a similar recovery to a severe burn. so, not having to do that was a great relief. the pre-op check up went well and we were all looking forward to a simple surgery the following day to just close up the wound and remove the wound vac at last. my surgeon did get a large portion of it closed with no problem, but unfortunately, i was still left with some of it open. he tried three times in surgery to close, but each time he did the flap would almost immediately start to get necrotic again. the area that would not close had a pretty sizeable tunnel, an area in which new tissue was not growing, but instead a cavity was forming and deepening in my chest. the surgeon thought he could get around it and still close, but no luck. so, i came out of surgery and spent the night in the hospital just so that they could keep an eye on the surgical site and make sure nothing took a turn for the worst. and it didn't. it was actually pretty frustrating to be there because it felt so unneccessary. after i got out of the recovery area after surgery i actually put my own clothes back on. when they wheeled me up to the floor and my nurse came to check me in, she said, "oh you're in your own clothes, what, are you on vacation or something?" i simply shook my head and said, "not exactly". i wanted to tell her what an insensitive idiot she was, but i refrained. seriously though. . . who the hell says something like that to a patient just out of surgery or any patient in the hospital for that matter? when i told mike about it he thought i should have said something like, "yeah, this sure beats the beach!". i wish that had come to me.

in addition to closing up a portion of the wound, the surgeon also began some revision work. he reduced an area on the left breast flap for a better shape and did some liposuction on my abdominal sides at each end of the scar for a smoother transition area. the abdominal area has been surprisingly painful. the recovery of this surgery has actually been really different than i expected. i am again feeling extremely tired and have very little energy. the pain is a stronger presence, i've had continuous bouts of nausea, and oddly, i've been experiencing blurry vision. monday, the symptoms were so bad that while i was at a store, i nearly fainted. you expect some of this for a day or two after surgery, but not much beyond that. after the near faint in the store, i actually went to my mom's job to have lunch with her. she is a nurse in the emergency room. after telling her about what i was experiencing, she convinced me that it would be a good idea to get checked out in the er. i was reluctant because i felt like there was probably not really going to be anything wrong and i was just feeling like crap because . . . but, i agreed and got myself checked in. 5 hours later, a ct scan, ekg, blood work, urine tests, and 2 liters of iv fluids and i was discharged with a diagnosis of "dehydration". i did feel a little bit better, but my vision was and is still blurry. i wonder what the problem is? anyway, i'm ok, just tired and a little blurry.

they are almost feathered

2009-06-22T21:40:00.007-08:00

mom's chicks are growing fast. this weekend it was finally time to let them out of the big trough, so we let rusty walked the plank one last time before we let them out. his enthusiasm for all these fluffy little babies has certainly not diminished over the past few weeks. when we lifted the chain link panel off the top we expected the chicks would fly out, but they couldn't quite figure it out so mom and i had to scoop them up. they are a lot quicker and not quite so keen on us handling them like we had been just a couple weeks ago. they do relax once you hold them for a moment though.rusty went even crazier for them once they were all running around. he was a good boy though and didn't even try to eat them.i checked on them tonight and they were all huddled up in their new nest (dog house). the first night we had to force them into it, but now they've caught on and realize they can stay cozy and warm in there all together. they are too cute for words. mom has moved all the chickens in together in the barn now, including a new mommy hen who is guarding her six little chicks with her life. she is such a good little mom. tonight i caught one of them poking their little head out from under her wing. too precious . . . and the picture really doesn't capture quite how cute it really is.

if only i was going home this month,

2009-06-18T21:28:00.008-08:00

i would have spent time in 5 different states. i suppose i'll have to settle for 4 (id, ut, co, wa).

after nolan came up to idaho on the last weekend of may, i drove back with him to utah. mom had to go back to work and so i figured i'd go spend my last couple of weeks there in utah to have a chance to visit with friends and family there. i did get a couple of brief visits with some of my friends and family, but i missed many of them. since i was staying with nolan and his girlfriend heather, i did get to see a lot of them, which was great. nolan did an awsome job with my wound stuff and it seemed to get a lot better with every dressing change.

last weekend, the three of us drove out to colorado for a quick 3 day trip to visit my dad. he was staying at his timeshare in silvercreek, which is just between granby and winterpark in the beautiful rocky mountains. the weather was a bit cool and rainy at times, but it was still really gorgeous and green there.

my cousin david recently moved to colorado springs, which was only a couple of hours from us, so he was able to come up our way one of the days we were there.

we all went on a whitewater rafting trip and had an awsome time (with 35 degree water and rain showers, this alaska girl felt right at home). i almost stayed behind from the trip because of my wound vac and dressing, but nolan helped me do a good waterproofing job and i wore a wetsuit, so it worked out just fine. it was so fun to finally do something really active. i've been far too inactive for far too long and it has definitely been wearing on me.

i had a couple more days in utah when we got back and then flew back to idaho yesterday. i'm here at my mom's again and preparing to return to seattle on tuesday. after my clinic consult on tuesday, i'll know for sure what surgical procedure i'll be going through on wednesday. fingers crossed it will just be a skin graph, as my doc indicated last time. if so, and there are no other complications, i will return to idaho on thursday and then back to seattle the following tuesday. again, if all goes well at that follow-up appointment, i will leave straight from seattle to go back home to alaska . . . at last . . . wish me luck.

i knew breast cancer didn't discriminate against many,

2009-06-03T19:11:00.005-08:00

but i thought 10 year olds were probably in the clear. my friend kara sent me a link today to a story that is heartbreaking and baffling. what is going on?

video

follow-up

my love goes out to this beautiful young girl and her family . . .

if you are interested in learning more about hannah's story, you can visit her website, our little sweet pea.

keep on running, walking, and participating in any other way you can to raise awareness and funds for continued breast cancer research. i truly believe there is a cure waiting to be found!!

family weekend in weiser

2009-06-03T19:03:00.002-08:00

my sister-in-law cerra wrote about and posted pictures from our recent family visit in weiser. nolan, dillon, and cerra, made the 7 hour drive from salt lake city up to weiser and we had a short, but sweet visit. it was so nice to have us all together for a change. thanks everybody.

the newest addition to almosta farm

2009-05-27T21:01:00.008-08:00

are 29 baby chicks. mom had actually ordered 30 chicks from a hatchery back in january, but there was a mix up with her order and it ended up cancelled just one week before they were supposed to come. oddly enough there has been a chicken shortage this year all over the country so when her order was cancelled she thought she'd just have to wait until next year. she raises free-range and very happy chickens that produce delicious eggs. lately, there have been more and more people wanting to buy her eggs, so she decided to up her flock. so, on the way home today from the airport, we stopped at a farm supply store and they had just gotten a big shipment in yesterday. talk about cute . . . oh my gosh, they were all so adorable. mom and i got to handpick a variety of precious little tweeting babies. it was too fun! we set them up in a big trough lined with sawdust. mom used a chainlink fence panel over the top so they will survive the cats and have a place for their heat lamp. we got them settled in and even rusty tried to help. he was so excited about them he could hardly stand it actually.

we got plymouth rock in white and barred (the barred, not pictured, are black with a yellow spot on their head and the white are actually yellow and to me look just like the peeps candy),

black sexlink,

rhode island red,

silver laced wayndote (i don't have a picture of this one either, but its black with white and grey markings), and polish crested (this bouffant only gets bigger and bigger as they grow).

getting nestled in for their first night . . .
mom's side yard in the evening sun looking so pretty.

the surprises are getting less surprising

2009-05-26T20:14:00.002-08:00

flew to seattle today with mom for another check-up with my surgeon. the wound looks good and is healing as it should. but, i found out today that it is not going to develop skin. i'm not sure whether i misunderstood before or whether this is new . . . but, my surgeon says that more tissue will continue to develop, but that he does not expect any skin to form. so, this means another surgery . . . (probably) a skin graft procedure.

he also talked about the possibility of doing another flap surgery though; this time using tissue and skin from my back. i certainly expressed my hope that there could be another option and he seemed to respect my desire to avoid another major surgery like that. but, as with everything else, we have to just wait and see what my body does. he says that the missing part of my right side breast flap may also be able to be fixed with a small implant. to me this seems a lot easier and less invasive than yet another part of my body being cut up and transplanted to my chest. for now, i will keep the wound vac on for another 4 weeks and i'm scheduled for surgery on june 24th. we'll see what happens?

i am scheduled to go home to alaska on june 18th and i think i still will. i will only get to be there a few days before returning to seattle on the 23rd, but i think it will still be a good thing to just be home for a little bit. i was supposed to be back to work on june 22nd, but obviously that is going to be delayed a little longer. thank goodness i have an understanding and flexible employer. i hope to be back to work the following week, but i'm not sure of what procedure is actually going to happen on the 24th so recovery time is unknown too. i'm crossing my fingers for just a skin graft.

heading back to idaho tomorrow and super excited for nolan's visit this weekend. on monday i'm going to drive with him back to utah since my mom has to go back to work anyway. it will be nice ot have a couple of weeks to spend time with family and friends there too. nolan will be able to take care of my wound vac, so everything should be good.

on another note, kyoto teriyaki, a hole in the wall place in the u district here in seattle, is the bomb. food is fresh and delicious and the owner is a doll who will bib you if you're wearing white. yummy.

pain pills and new tissue

2009-05-20T20:45:00.003-08:00

the wound vac dressing is supposed to be changed every 3-5 days, preferably every 3 days, but mom let me push it to 4 this time. so today was the day . . . and it wasn't that bad!!! i took the biggest dose of pain pills i ever have and what do you know, it did the trick. still wasn't a bucket of laughs, but wow, it was so much better. whew!!

the wound still looks hideous to me, but mom was amazed at how much better it looked. she says that its probably raised in depth by and inch or two just since the last dressing change. she also explained to me more about what is actually happening with the wound vac on. i thought it was just a matter of skin forming over the open wound, but that the chunk of tissue would still be missing once the skin formed. but, she explained more today that tissue is actually growing back in to fill the space missing. i'm healing from the inside out and the "hole" i now see will actually get smaller. i don't know how i missed this before, but i did. the tissue won't completely grow back, but i guess a decent portion of it is supposed to. seems like good news to me.

its not all bad

2009-05-19T19:22:00.007-08:00

i'm doing way more lazing around than i can stand!!! i'm so anxious to move my body, get some exercise, feel like a normal active person again . . . but its not quite in the cards yet. aside from lots of laying around, naps, rides in the country . . . i am entertaining myself with the animals, knitting, and even swimming (sort of). the weather has been warm and beautiful and my mom has been awsome tending to me, which is enough to drive anyone crazy. thank goodness for mothers who just keep on going anyway. tomorrow i'm going to attempt a long walk.

mom opted for this blow up pool instead of the hay bail pool of years past (which i loved too). we both realize this might border on "white trash" to have a pool like this in the backyard, but then again we both have a little yee-haw in us and aren't ashamed a bit to have this up. its actually pretty big at 15 ft. across and about 4 ft. deep. no doubt, its a great retreat from the hot hot summer temps. we've already had a couple of 90 degree days and its only may. mom will be really loving this by june and july when the temps are often over 100 degrees. even though i can't really submerge myself and swim around like i want to, i am able to use an "aqua guard" plastic covering to go over the wound vac dressing. i'm able to release the tube from the wound vac for short periods of time and enjoy the blow up lounger raft and the cool water. the raft keeps me out of the water just enough and the aqua guard protects me from the splashes. even rusty likes to float around in the pool.

hanging out on mom's couch with kitty autumn, and weiner dog rusty. they are great buddies who keep me company a lot these days.

here is just one of the many many new babies out here in weiser. its that time of year and around every turn there is a new baby horse, sheep, goat, cow, or something. this little colt is particularly beautiful and is just down the road from my mom. its been a highlight of my day to check in on him and see how fast he's growing.

mom has been thinking about getting a new, BIG, tv for a while now and yesterday, she went for it and today she found a tv stand that matched her other furniture perfectly. sure makes movies at home a lot more fun. i'm happy for you ma . . . well deserved.

dead stuff out . . . open wound in . . .

2009-05-16T20:06:00.005-08:00

in the few days prior to this latest debridement surgery i was beginning to feel like i was getting sick. sore throat, runny nose, headache . . . no fever though. my mom has been sick so i thought maybe i was just catching something from her. but, it was getting worst quick, even though i had started an antibiotic. but, the day of surgery i felt really bad; nauseous, headache, and extremely tired. my mom didn't tell me this until i was doing better, but she thinks i was on the verge if not already there . . . of being "septic". she says my skin color was slightly grey and that i just looked really terrible. i don't remember how i looked, but i know i felt like total shit.

anyway, the day of surgery i couldn't have anything to eat after midnight, but i could have clear liquids up until 7am. my mom actually woke me up to drink some apple juice and tea about 6:30am. i argued with her that i didn't want to and that i felt like crap, but she insisted. so i drank it and then promptly puked it up. turns out this was probably a good thing because they called me early for surgery at 11am instead of 5pm. the anesthesiologist became somewhat concerned after he learned that i had puked a few hours earlier and wasn't sure if putting me under was the best thing to do. but, gratefully my surgeon pushed to proceed anyway. they put some sort of vomit shield or tube of some sort down my throat during surgery so i wouldn't aspirate if it happened again. surgery was only an hour and a half this time and when i began waking up afterwards it was almost instant that i felt sooooooo much better. i didn't have any pain and besides a little bit of hunger pangs, i was really feeling great. a pudding and a few saltines and i was feeling like a super star. in fact, i was better than i had been in almost three weeks since the first surgery. it was wonderful.

a wound vac was attached to my chest and my right side breast flap was considerably smaller. the wound vac has a sponge that sits in the open wound and a suction tube that attaches to that and keeps the fluid draining consistently. i understand that the wound vac is pretty revolutionary and accelerates healing considerably. they think i will have this on for 4-5 weeks. but, if i were using standard dressings it would be several months before it would be healed. the wound vac was really the only reason i needed to stay in the hospital the night of surgery. they needed time to set up for the portable unit, and get insurance authorization. the one night in the hospital actually wasn't too bad. unlike last time, i had really nice nurses, i was much more mobile and the pain was at a completely different level. at first i thought i was in the clear from the pain completely, but in time it crept back up. i guess i was on a "nerve blocker" at first, which masked it very well. my burning question now though is why i can't be on this "nerve blocker" all the time. if it can make you feel that much better than why not? nobody has been able to answer me yet?

so, i got all set up on the portable wound vac and discharged from the hospital the following day, thursday. it was straight back to the hotel where i took a 4 hour nap that felt so good. the best sleep in 3 weeks. mom and i went out in the evening for a nice dinner and to my favorite seattle yarn shop for a new project. we headed back to idaho early afternoon on friday.

today was the first dressing change for the vac. i was not prepared. but, it seems that i haven't been prepared for any of this, so what's new? my mom is very experienced in wound vac care, so she was able to do it. my pain was truly off the charts. first, just the removal of the super duty adhesive bandage, tegaderm, about did me in. i was screaming and crying and though though i was pretty much thinking about myself at that moment, i was also feeling really bad for my poor mom. it could not have been easy to deal with me today in that state. next, the huge gaping wound, once exposed, burned like it was literally on fire. unfortunately, i did not take a pain pill prior to all this. i definitely won't make that mistake again, especially since i'll be going through this every three days for at least a month!!!

the wound vac definitely camouflaged the extent of the wound. the sponge i saw looked to me like it was about the size of a thick piece of guaze and i was expecting to see a small chunk of skin/tissue gone, but instead, i learned today that the sponge is actually several inches wide and deep and only looked that small because of the suction that was on it. the wound, or rather, hole, that it fills is about 4 inches wide and at its deepest part, 5 inches deep. to me it looked like a shark bite and was disturbing to say the least. my mom says that with every dressing change i will notice a difference and that the healing is really quite rapid. though it looked scary and awful to me, my mom says it looks really good.

i go back to seattle on 5/26 for another appt. ugh. fingers crossed it will just be a clinic visit and NOT another surgery. they did successfully remove ALL of the dead tissue so its a good chance i won't go to surgery again until i'm totally healed and ready for revision, several months from now.

still tired and resting a lot, but am doing fine . . .

my phone won't let me post in the main section? so for now I will just say surgery went really good. I feel better already!

2009-05-13T16:41:00.004-08:00

back to surgery

2009-05-12T15:49:00.004-08:00

mom and i flew to seattle this morning and i had my follow-up appointment with my surgeon this afternoon. he says that things look okay, but due to the level of dying tissue and brewing infection, he wants to operate again to cut out some of the dead tissue. at my last appointment he was still unsure whether i would need to go back to surgery this early and thought that i may be able to make it until the revision surgery in 3-4 months. but, today, he thought it best to get some of this dead stuff off my body. though i am NOT thrilled about going back to surgery, as you might imagine, i am very glad that this nasty dead smelly oozy disgusting tissue is coming off my body!!! this will likely not be the last surgery to remove this dead stuff, but it will hopefully be a good start.

i am an "add-on" surgery patient tomorrow so that means i'll be going in at the end of the day, likely around 5 or 6pm. he anticipates the actual surgery time to be about an hour, but there will be prep and recovery which will make the whole time around 3-4 hours. i may be able to leave as soon as i'm out of recovery and go back to the hotel with my mom, but, of course, depending on how things go, they may keep me in the hospital. if they do though, it shouldn't be for more than one day. fingers crossed i won't even have to stay one day.

this is a relatively simple procedure he says, so hopefully we're not in for any major complications or surprises! wish me luck.

again, we are at hotel nexxus in seattle and the number is (206) 365-0700 and we are in room 128. both mom and i have our cell phones too.

although i appreciate the enthusiasm,

2009-05-06T08:34:00.003-08:00

the anticipation of my "new bod" is not exactly something to get too excited about. by the comments here and the things people are saying to me, i guess i haven't explained it well enough. these surgeries have NOT made an improvement to my body. i am terribly mis-shapen and there is nothing to say that the "revision" surgery or surgeries are really going to change that. my body looks completely different from my pelvis to my neck. it does not look good and it may never. my shape is odd and unreal; not flattering. i, and others, had thought that i was getting this "bonus" procedure of a tummy tuck, but it has not turned out that way. yes, my stomach has slightly less mass, but it is certainly not the effect of your average tummy tuck and there is not a smooth transition from where the fat/tissue was taken to what i still have left. i now have a sort of permanent shelf or in the most literal of images, a muffin top without even having any clothes on. you know . . . when a girl wears a pair of pants that are too tight and all her stuff sort of hangs over the top . . . well, that is what i look like, except its just the way i'm shaped now, not something created by pants that are too tight. believe me, i would take my excess tissue back to have the fat, but normal looking abdomen of my pre-surgery self. i waited a long time for this procedure. i fought with my insurance company to pay for it for over a year. i thought i knew what i was getting into. but, i didn't. as i've said in earlier posts, i am doing my best to be patient and hopeful, but the truth at this moment is that this whole thing feels like one huge mistake that cannot be undone. so, although i know that comments left here and things people are saying to me in person about "my new bod" are certainly meant with love, support, and positivity . . . there is no "new bod" to be getting excited about. thanks anyway.

so, right now i am basically pretty happy and trying to enjoy the time i have to be with my mom, to be in this beautiful spring weather, and to have a legitimate reason not to be working! even the worst of all this does not feel like its pressing very heavy on my mind. i am for some reason, to my surprise, actually coping okay. i know it may not sound like it when i describe how things are, but really i am. what i write is just the truth and as we all know, sometimes the truth is ugly. but, even though i am disappointed i am not ruined. i also realize that time and patience are my friends and that the future is unknown. i had thought that this would be the end of a very difficult chapter in my life and though its not the ending i was hoping for, it is still an ending. well, in about 7 months it will be anyway. any which way all of this turns out . . . it is time to move on and move forward . . . and i will . . .

on another note, the analogy that i am living like a dog right now is perhaps the best way to explain it. i'm enjoying the moment i am in (for the most part), i need a lot of love and attention, naps are necessary, and i'm still pretty happy and playful. gratefully, i have not been reduced to gnawing on chew toys . . . for me, its otter pops . . .

happy wednesday.

3 years

2009-05-04T11:52:00.002-08:00

its been 3 years since this seemingly neverending nightmare began. i thought i was nearing the end . . . but, as you know, i'm still in the thick of it. my doctor says that probably by the end of the year we'll be done with all this reconstruction stuff. just 7 more months . . . fingers crossed.

all is as well as it can be right now. erik and i left seattle saturday and spent the night with friends in boise that night. sunday afternoon nikki took us out to my mom's place in weiser and we are now just laying low. i'm moving around pretty good, my pain has gone down a lot, and the swelling is going down a lot too. i notice that although i feel good and can get up and around, it doesn't last long. i have to enjoy the moments, usually about 2 hours, before i sort of crash again. i just get super exhausted really fast. so, as long as i just take it really easy then i stay doing pretty good.

the phone number and address at my mom's where i'll be for the next month or so:

208.549.0505
834 jonathan rd.
weiser, id 83672

going home

2009-05-01T10:46:00.003-08:00

well, sort of. home to my mom for now. erik took me to my doctor's appt. this morning, which went fine. i got the remaining 4 drains removed and am not scheduled to come back until 5/12. so, erik is helping me get to boise tomorrow and on up to weiser with my mom. he'll have a few days on the farm, which my mom is soooo excited about and then will be heading back to alaska wednesday morning.

the state of things right now with my surgery results is not particularly pleasant. truth be told, i'm somewhat discouraged and not entirely sure this was the right decision for me. my body looks sort of mutilated and angry and its hard to believe there is any coming back from this place. but, right or wrong, it is what it is . . . except, that it really isn't yet. i still have a long road ahead to let my body heal, change, settle . . . then, its back to "revision" surgery in about 3 months. the doctor was assuring today as he explained what will be "fixed" at that time. I want to believe him, but he also told me how things would be after surgery and it didn't really turn out that way. all i can do is be patient and hope for the best, so that is what i'm trying to do. as for the question of how i am feeling or how i am doing . . . i am fine. i am way better than i was the first 5 days and things will get better still i'm sure. pain is signficant, but controlled and my mobility is slowly increasing.

thanks again for all the support everyone. i'll keep you posted.

new blog . . .

2009-04-29T15:27:00.003-08:00

and its all about knitting! yaaaaay. i'm sure you can hardly wait.

if you're interested, you can read at www.fluidmeditations.blogspot.com

funny funny boy

2009-04-29T14:39:00.002-08:00

something i love about erik is that he can make me laugh, but at this particular moment, i can't say its at all helpful. you know the saying "he keeps me in stitches" . . . well, he literally is going to do just that. he's caused quite the laughter so far and with each chuckle i can feel the steri strips on my abdomen tearing. its awful. but, still funny too. huh? unfortunately, when he makes me laugh and i am trying to hold it back and telling him to stop, and cringing from obvious pain, it just makes him laugh harder which then makes me laugh harder . . . you get the idea. so hopefully he'll take it down a notch and i won't have to report any new complications from too much laughing.

i'm back

2009-04-29T13:41:00.000-08:00

i just finished writing a long post . . . then got kicked off the computer for a password error through the hotel. grr. so, here we go again.

mom drove home yesterday just after erik got here. they actually met up by accident at the hotel. i must admit, i was not ready for her to go. yesterday was still a pretty hard day and i just didn't think i could do it without her. those first 5 days were filled with such misery and pain and would have been 1000 times worst without her. of course some of it is just the comfort of having my mommy, but also the fact that she is a nurse through and through was really something. she picked up A LOT of slack for the paid providers. she would massage my arms, scratch my itchy body, brush my hair, wash my face, etc, etc. before she left i was able to have my first decent sponge bath. she washed my hair and got me more cleaned up than i had been since surgery and it did leave me feeling at least somewhat better. i can't thank you enough for everything mom!!! you are an angel and i love you something fierce!

erik got the hospital a few hours after my mom left and patiently sat with me last night and was back again early this morning ready to help me blow the joint. i knew it was discharge day and i was ready!! yesterday i had 3 iv's taken out through out the course of the day and was taken off oxygen. and this morning was even better. the doctor finally removed the two doppler probes which were held in place by about 10 metal staples each. since i woke up from surgery it has felt like a cat has been clawed to my chest, so getting those taken out was a wonderful relief!! they also took out my pain pump to my abdomen, which is a fairly large plastic box that was dangling from me so that was nice to be free from too. i'm still left with four drains, but that doesn't feel like much compared to the 20+ cords, tubes, monitors, etc. that i've had for the past few days.

i will return to the hospital on friday for drain removal and if everything is still groovy, erik and i will be flying to idaho on saturday. he'll stay a couple days there until my mom gets off work again and then head back up to alaska to have a few days home before going back to the northslope. poor guy has spent almost no time at home for about 3 months now. i'm so grateful that he could be here with me too. i just need a lot of patience and support and he is pretty great for that. i love you something fierce too!!

although i started out with some unexpected complications, today it feels like i'm back on track for a pretty average recovery. fingers crossed i will keep progressing forward. my dizziness/nausea is almost completely gone and though pain is still present its definitely in more control than it has been. the biggest issue right now may simply be the fact that i can't stand up straight. my abdomen was pulled down so tight that i'm hunched over like a little old lady . . . complete with my hands clasped behind my back. the positio suddenly makes sense to me. if you don't clasp behind, you have them hanging down like an ape. neither is too pretty or comfortable, but oh well . . . at least i'm walking. they say it will be about 3 weeks before i'm completely upright, but that's okay. i have a few meds for the next week or so, a follow-up on friday, and then two more at the 2 week and 4 week mark back here in seattle. other than that my regime is simply patience and time. being in idaho will be a perfect place to relax and heal. i do hope some of you will take my mom up on her offer for you to come and visit during the month of may or early june. we'd love to see you.

thanks again to all of you for your love and support (and flowers). it all means so much to me! hope you are enjoying some nice spring weather wherever you are.

Surgery Outcome - what does it look like?

2009-04-27T04:42:00.003-08:00

Sasha had her 1st surgery for breast reconstruction on Thursday, April 23rd. You may remember my post from that day. When Sasha got out of surgery everything looked awesome. The breast reconstruction was a work of art. That has since changed.

You know that she had to go back to surgery due to complications. When they went in to try to save the left breast the struggling circulation of the right breast was compromised. What Sasha has been left with is much different than what she came out of her 1st surgery with.

On the left where there were once hairline incision lines there is now thick, open incisions lines which will leave thick, rope-like scars. The good news is that the tissue was saved. Today it has good blood flow and good color.

On the right is a different story all together. The incision lines on the right are also opening up. Not as much as on the left and for a different reason. The tissue on the right is dying. Before Sasha went in for her 2nd surgery the breast flap on the right was having trouble establishing circulation. As I mentioned, during the 2nd surgery the blood flow was compromised which basically shut down what was already a fragile system. Sasha came back with a mottled breast flap with blackened edges. We watched as the breast flap tissue deteriorated, turning deeper purple to black by the minute. What Sasha is left with is about 1/3 healthy tissue on the right upper breast flap and about 2/3 deep purple tissue with blackened edges on the right lower breast flap. It is very disheartening. The doctor that was attending Sasha over the weekend was wonderfully kind and spent a lot of time with Sasha explaining her condition to her. Basically, they are going to leave this tissue in place for 2 weeks. They do not want to cut away any tissue that the body may accept. Since they have no way of knowing how deeply the tissue is effected they have not determined how they will revise the flap. The encouraging news is that the doctor was very reassuring that there are many options for revision of this flap and the outcome can be good. i have since learned that i will not be going back to surgery for any kind of fix for about 3 months. so, although i do have two new breasts, one looks sort of like its frostbitten. its okay though. i realize that this can and will be repaired and my job is to just be patient and grateful. i will probably return for this revision surgery in july.

So now we wait ...

Surgery Outcome - how does it feel?

2009-04-27T02:05:00.011-08:00

Sasha asked me today if I had posted an honest blog about how she is doing. I realized I hadn't really spoken much about about how she is feeling. I guess that is part of my coping mechanism. I get focused on physiological functions, (lungs, heart, pain management, etc.), and stay focused on that until stability is established and maintained. After all, recovery after any surgery is a concentrated effort to restore normal body functions under the best of conditions. Sasha's physical recovery has been difficult and prolonged because of the complications she has experienced. She has had to work a little harder and a little longer to restore normal body functions. Sunday, April 26th, she turned the corner in that arena and was moved from ICU to the medical floor. She still has a long row to hoe toward full recovery but I am certain that physically she will be okay. I am also sure that emotionally she will be okay but oh what a ride!

Anyone that knows Sasha knows that she is not one to wallow in self pity. Is she cheerful? Not hardly. What was to be a new beginning suddenly became a nightmare. At one point it looked as though the operation had been a complete failure which would have left her disfigured and marred even worse than when she had started. Fortunately Sasha's situation did not turn out to be the worst case scenario which has left her with a measure of hope. Among the many tearful comments like, "why does everything have to be so hard..." she has said that she clings to the notion that "things could be much worse..." As far as what Sasha is thinking and feeling I would do best to let her speak to that. i will talk more about that later. at this moment i'm doing okay and am grateful to be leaving the hospital in a couple of hours. i feel so incredibly grateful that my mom is who she is and was able to be here to take care of me. I COULD NOT HAVE DONE IT WITHOUT HER!

I know there is a lot she wants to tell you but right now she has very little strength or endurance. She tried to send a couple of text messages yesterday and it totally wore her out. its true. i barely had the strength to endure breathing, holding my head up, moving. it was truly the most miserable 5 days of my life. yestreday was a little better and today is much better. i can see the light at last.
DIRECT NUMBER TO ROOM - 206-598-6010

As I watch this loving and tender hearted young woman struggle not to lose herself in the midst of the obstacles she has to face in life I feel so very grateful for the love and friendship which surrounds her. While I realize that individually we are each responsible for our own well being, I do believe the love and support we receive from family and friends helps sustain us. I know Sasha truly values her family and circle of friends, as do I. Thank you all for your love, concern, prayers and positive energy on Sasha's behalf. yes, thank you so so so much!!

Love to all, Kathleen.

Surgery - day 2

2009-04-24T16:40:00.005-08:00

(some more shortening up here ma. thanks for being so detailed, but even i am lost on some of it so i am just trying to make things a little more succinct.)

Just as Thursday night turned into Friday morning Sasha's nurse discovered there was trouble brewing. The Doppler could no longer detect the swooshing rhythm of blood flowing through her veins. This stimulated a flurry of assessments and tests but it soon became obvious that there was a serious problem. The left breast flap became discolored and began to swell and get hard. By 2:30 am the decision was made that Sasha would have to go back into surgery to try and save the newly transplanted tissue. At 4:30 am I was once again escorted from PACU, this time as they were rolling Sasha down the hall to the surgery suite. so just 9 hours after the last surgery ended, i was heading back in for what turned out to be a 5 hour procedure. i must say how impressed i am that there are surgeons out there who can sustain and do this difficult work and for such a lengthy amount of time. its hard for me to imagine that kind of endurance for anything, let alone this. i don't have much memory about going back into surgery except that i was scared and sad that i might have just gone through all that for nothing.

Sasha went to the recovery room at about 9:15 am. Her doctor came and met with me about a half hour after that. His initial remark was, "... this was not the slam dunk I had hoped for..."
I thought to myself, "what does THAT mean...". I didn't have to wonder for a moment as the doctor quickly proceeded with his report. Contributing factors causing the problem are that the veins in Sasha's left chest have been compromised by the radiation she received and there are a couple of "bends" where the blood "slugged up". The doctor reported that "massive blood clots" had formed which had occluded the venous blood flow and compromised the tissue of the newly transplanted breast flap. The doctor said that in spite of this that the breast flap on the left was "still in really good shape". The doctor went on to say that this problem occurs about 10% of the time and of that number he only loses 1 or 2 flaps a year. He really did not try to be reassuring and said that at this point he cannot predict the outcome. He did say that when found within the first 24 hours the success rate for saving the tissue is about 90%.

"Now for the right flap... " (what?!). I was then told that the breast flap on the right is also having trouble establishing circulation but in a different way. later the doctor stated that it is likely that while they were working so hard to fix the left and while my body was again slowed down and under heavy anesthesia, it was probably a big reason for some failure on the right. There is not the swelling that there was in the left and the discoloration is different. The skin looks mottled and is turning black around the incision sites. This is not a surgical fix. There is a very real chance that Sasha may loose part or all of the tissue on the right.

Sasha is heavily drugged and still in a lot of pain. All of you, her friends and family, mean so much to her and we appreciate all of your positive energy and prayers on Sasha's behalf, (and mine!). I may not be readily available to talk with you as I will be spending all the time they will let me in with Sasha. However, do leave me a message and I will try to keep in touch and keep you all updated.

our love to all :)

Surgery update

2009-04-23T21:24:00.005-08:00

Sasha's mom here blogging for Sasha as she is indisposed :) I am afraid this won't be one of my more creative or entertaining blogs but at least I can give you an update. (sasha here finally. thanks for writing ma, but I'm going to shorten it up a bit. the italics are me, but the rest is still you)

we arrived at the hospital thursday morning, 4/23 at 5:30am. i was ready . . . i thought. We were escorted to pre-op at about 6:00 am. There I collected all of Sasha's belongings, her vital signs were checked and she settled in for the wait for surgery. I was then escorted out promptly at 6:30 am, (along with all other visitors). The rest of Sasha's experience was unknown to me until I was able to see her in recovery.

I had spent the day at the hotel and returned to the hospital at about 5:00 pm. I was impressed by how efficiently the hospital is run but I must say I did miss the human element found in smaller hospitals. I did not get an update once during surgery. I was told when surgery was over though. I did not get to speak with Sasha's doctor in person but he did talk with me on the phone. He was very optimistic and told me that the surgery went well. He said that the biggest risk for complications was in the first 48 hrs with the vascular system. They will be monitoring Sasha very closely during this time to ensure that the transplant maintains an adequate vascular supply. Thus, she will be in ICU for at least 48 hours.

Sasha's procedure was supposed to start at 7:20 am and last about 10 hrs. I don't know what time the procedure actually did start but I do know that it wasn't over until 7:30 p.m. when I was told she was taken to recovery. I was finally able to see her about 8:30 pm. mom left about 10pm and i have very little memory of that night. it is really just a blur of pain and misery. i do remember not having a very good nurse and feeling like i was a burden when i would ask for anything. when i told my mom about that the next day, she was obviously non too pleased and made a point to let the next nurse know it was not acceptable. my next two nurses in the ICU were great!

I will be going back to the hospital first thing in the morning. My phone # is 208-550-5235. You can call and leave a voice message or you can text me and I will try to respond promptly. I will also keep you updated as to Sasha's progress and location in the hospital. As soon as she gets a room assigned I will let you know how to send her mail etc.

Love to all and thank you for your good thoughts and prayers.

oregon

2009-04-20T20:09:00.008-08:00

i had my pre-op appointments on friday in seattle and everything went well. since my surgery isn't until thursday, mom drove up from idaho and together we drove to oregon to visit her aunts and uncles, my grandma's siblings. i don't really know them, but visiting and hearing stories about my grandma is still pretty great. i'm amazed at how well all of them are doing at their ages. they are all still independent and pretty spunky i must say.

the baby is larry who is 82 and truly just an older version of my uncle eric. its absolutely amazing the similiarities between them from the way they look to the way they laugh to the kind spirit they both have. we spent the first night with him and had a nice day up the molalla river. this area is just stunning!! he's still living on his own and takes turns with his little truck or convertible miata when he goes out for a drive. it was only about 2 years ago that he finally gave up his motorcycles.

next is winnie who is 87. she is also living on her own, still mowing her lawn and cooking great meals. amazing. she was once a pilot in the airforce and her strength and independence are still very present.

and then there is byron who is 92 and his wife dolly, 87. apparently byron and my grandma were very close and he is a lot like their father. they live with their daughter but are still pretty self sufficient. while we were visiting dolly was recovering in the hospital from getting a pacemaker.

and finally there is george who is a whopping 97 years old and probably the healthiest, sharpest, and grouchiest of the bunch. he still lives on his own near the coast, in otis. he drives his truck or his little scooter around and takes care of himself with a little help from some neighbors now and then. larry takes the 2 hour drive to go and check in on him once a week as well.
there were no shortage of jokes and wisecracks being around these three. they all still like to laugh and seem to do it often. mom and i had a really nice couple of days. we made our way back to seattle this afternoon and now have a couple of days to relax before surgery.

thank you friends

2009-04-16T12:30:00.002-08:00

for a wonderful send off last night. it means a lot to me that each of you were able to take the time to come over and help me relax and be sent off to this next step with love and support. i leave this afternoon for seattle . . . i'll keep you posted . . .

updates

2009-04-13T08:10:00.004-08:00

my blog has moved from http://www.sashaswindow.com/ to http://www.sashaswindow.blogspot.com/

i'm home from my trip with erik to california and mexico. i have just a few days before i leave for seattle on 4/16. i won't be home in alaska again until mid june . . .

i'm starting a new blog, which you will see a link to soon. it will be all about knitting . . . stay tuned.

my mom will be with me in seattle for my surgery and i will have her post here with an update of how things go. the big day is thursday 4/23 and it would mean a lot to me to have you thinking positive thoughts for me that day.