RIP Missy
Current mood: scared

http://www.myspace.com/jacobsandjuliasheart

My very good internet friend, and IBC sister passed away Wed, leaving behing two young children.  Not only do I miss her terribly; but her death just brings to life the grim reality that my IBC could come back at any moment and do the unthinkable.

Despite the good, bad, or ugly going on in your life, enjoy it!  Find laughter, enjoy your friends and family, and appreciate it!  Regardless if you live 10 minutes or 100 years; life is too short to waste!

Missy was so strong and lived her life up to the very end.  She went through countless painful clinical trials at Karmanos to try to fight the cancer that had taken over her body!  Yet she was happy to be home and enjoy her children; and it was a challenge to find the strength/energy/patience to enjoy them.

For those who don't know; IBC is a very rare and aggressive form of breast cancer.  It doesn't show up on mammograms or ultrasounds because it doesn't form a lump; thus it isn't found in a self breast exam or clinical breast exam either.  It isn't found until your breast grows, turns red, your skin pits and gets bumps (like zits), your nipple inverts and discharges.  By this time it is a "stage IIIb cancer" (really big and in the lymph nodes) or stage IV (past the lymph nodes and in other parts of the body).  The statistical survival rate of IBC is currently 40% survive 5 years; it's actually better than that the statistics just haven't "caught up yet"; probably more like 50-60% now.  Most doctors have never seen it; it goes misdiagnosed and mistreated.  They are working on classifying it separately from breastcancer as it does not act like breast cancer; it acts more like a skin or blood cancer.  The improved statisics are from increased education of the public from other IBC survivors spreading the word; so that diagnosis/treatment can begin before it is too late..
http://www.msplinks.com/MDFodHRwOi8vd3d3LmliY3Jlc2VhcmNoLm9yZy9zeW1wdG9tcy8=

In October of 2006 (4 mos after my diagnosis) MD Anderson opened the world's only IBC clinic; and they are the world leader in IBC research.  You don't have to go to MD Anderson IBC Clinic (http:/www.karmanos.org/); but your doctor needs to be following their "most recent" protocol and should be consulting with them.
http://www.msplinks.com/MDFodHRwOi8vd3d3Lm1kYW5kZXJzb24ub3JnL2NhcmVfY2VudGVycy9icmVhc3RjZW50ZXIvZEluZGV4LmNmbT9wbj04MEI1NjcwQi03RjNELTExRDQtQUVDODAwNTA4QkRDQ0UzQQ==

My original medical oncologist was Dr. Frankie Holmes http://www.msplinks.com/MDFodHRwOi8vd3d3LmJyZWFzdGNhbmNlcmRvYy5jb20v; previously of MD Anderson and one of the leading breast cancer doctors/researchers in the world.  I am currently with Dr. Decker, who is also an excellant doctor http://www.msplinks.com/MDFodHRwOi8vd3d3LmNjYXBjLmNvbS8=

When I returned to Detroit when I was in remission to do my radiation; she referred me to Dr. Frank Vicini  who is world renowned and "wrote the book" on radiation therapy.  http://www.msplinks.com/MDFodHRwczovL3d3dy5iZWF1bW9udGhvc3BpdGFscy5jb20vcmFkaWF0aW9uLXRoZXJhcHktYnJlYXN0LWNhbmNlci10cmVhdG1lbnQ= (I eneded up seeing his associate Dr. Inga Grills since his calendar was booked and couldn't get me in "on time"; she took great care of me.)
Hugs
Jessi

 I also just found out the mother of one of our group members here just passed on Tuesday.  I HATE BREAST CANCER!

http://www.myspace.com/ned_rocks (entry below; but you can read more at the above link)

by the way; the Barry White song playing was the #1hit the day I was born, lol

Monday went to PT, my back was doing much better and therapist was really happy with my progress; later that night Brady jumped on my back...

Tuesday I took lots of meds... also saw my oncologist.  Everything looks good; he wants to see me again in 6-8 weeks when he'll order another PET scan. If my back spasms don't resolve with PT he needs to know so he can order an x-ray to look for tumors (ugh).  I had one done a few months ago when I got the PT perscription; they were "normal" so at least for now I don't need to worry about that.

Wednesday I had my Herceptin treatment.  My back was feeling much better; but in all fairness I was sitting in a heated vibrating recliner for two hours while I got my Herceptin (gotta love "Club Beaumont" as my sister's doc boyfriend calls it).

Today, a bit nauseous (trying not to take my anti-nausea meds but I think I'm might need to); my back hurts and did not feel better with PT stretches as it normally does (in fact it felt a little wors) trying not to take pain meds and muscle relaxers but again, I think I'm going to have to.  I have PT this afternoon (thus why I'm trying not to take meds; need to be able to drive and function); and today my "mother's helper" is over so I've been napping while she plays with the kids!  Hopefully I'll be feeling better by tomorow as I have a busy weekend of partying planned ahead of me (ok, so a wedding shower and a family party isn't "partying" but it's as close as I get, lol).

The kids start school in a month (Brady, 5, kindergarten; and Morgan, almost 3, preschool) which means I start physical therapy so I don't get any time to myself!  I've been havingincreased muscle spasms in my back thus more pain. 

So I'm trying to get better control, I need to be exercising which up till a few weeks ago I haven't been doing and I'm still not getting enough exercise in per week.  So I'm reducing computer time (which is a good thing since Morgan learned how to use the computer and has taken over mine; she can't get enough of Dora at Noggin on-line.

Monday will be my 3rd massage in 4 weeks, I contemplated canceling it; but I'm glad I didn't... (my next massage is in 3 weeks; it'll be half massage and half Reiki) 

I had a "cartoon moment" this morning; I was getting the kids some cereal, the balsamic vinegar fell; so as I was catching that the gallon of milk fell, so as I was catching that the quart of milk fell.  Thankfully the quart of milk did not burst open as it hit the floor and everything was put away without any messes.  I could hear Kevin running down the stairs is response to each "ahh, ohhh" for each fall.  I told him everything was ok; but then I realized my entire back had gone into spasm from the incident...

 I can't emphasize enough that this is getting VERY OLD!    I did at least find some time to give myself a pedicure this morning.  Not that anyone is looking at my feet but it felt good, was fun and my feet were needing some TLC.

August will be a very busy month for us, family/friend parties/outings every weekend...  Shall be interesting as Brady already had broken into a gift for a friend of his.  He very craftily snuck it into his room, partially opened the box and was pulling pieces out... Hopefully we've recovered all the pieces...

Morgan is doing great with potty training, there is the two steps forward one step back; but all in all she is doing quite well.

My mommy's helper is on vacation next week, so I'll not have my helper but I think we'll be fine.  Treatment was last week so hopefully the muscle spasms will start to slow down especially with the massage.

We're trying to get a vacation in before the end of summer, but Kevin's work schedule is as crazy as ever...

Swim lessons and t-ball are over next week, don't know when flag football starts and haven't gotten the "fall schedule" for everything else...

I'm doing a little bit of yoga and swimming laps, trying to get a regular schedule going without "overdoing it"...

So I saw my breast surgeon today.  The "lump" found in the MRI was not cancer (as we've known) but is fibrocystic disease (no biggie; perfectly normal at my age). 

Shewalked into the room and said, "let me guess you're freaked out and want a mastectomy".  I said "no, I'm ok but if I have to get a biopsy every 6 mos then we need to talk".  She agreed; she thinks watching my breast (MRI and Mammogram in January; check-up with rad oncologist in January, check-up with breast surgeon in July; check up with medical oncologist every 2-3 months) is the best thing right now.  She checked me out; she can't even feel the lump in my breast and said everything looks good (other than those horrible spots and tanning on my right chest from "radiation changes"; she joked that I get to blame that on my radiation oncologist). 

She doesn't want me to go into any surgeries before I have to; give my body as much time as possible to heal.  When we do get around to doing the mastectomy (probably in the next couple years depending on how things go) we'll do reconstruction then.  She says as long as I'm responding to the Herceptin we shouldn't see any new tumors!

So all in all it was a good visit.  Same old lecture, eat healthy and exercise on a regular basis.  She was happy to see I've lost the "extra weight" but didn't like hearing I stopped exercising because I've been hurting.  She said I HAVE TO EXERCISE.  So I'm trying to get motivated to do so!  Last week I went swimming two days in a row; and this week I'm really hurting!  So once again I have to work on pacing myself.  So maybe if I do a yoga video on Monday, walk on Wednesday, and Swim on Friday; and I'll still have riding my bike to the pool every day and walking around with the kids I might be able to keep up with it!

In the fall I start physical therapy again; I had to put it off until the kids are back in school! 

Technically I could do reconstruction surgery now; but I really don't want to be layed up in bed that long and I'm already in enough pain!  My white blood cell counts are at the very bottom of normal; so I'd like to get those higher as well! 

So for now I'm sticking with non-invasive procedures!  Treatment every 3 weeks, massage, accupuncture, physical therapy, lots of doctor appointments and lots of scans/diagnostic testing!

We had an amazing 4th of July

First of it started off with great news that I am still cancer free (I had to do another biopsy, MRI's give lots of false negatives). We missed out on goingup north because of my recovery from the procedure; but still had lots of fun at home.

Kevin went golfing with his boys; very needed and deserved! I made pancackes for the kids, took them to the subdivision/association parade and picnic. By the time Kevin was done golfing Mo and I were pretty worn out and the only thing we hadn't done at the picnic was go swimming at the pool.

So we loaded up in the truck and went to Aunt Tara's and Jason's house for their 4th of July party!

Jason proposed to Tara a few days ago; so we also had a champagne toast to the happy couple. It was a great party, lots of family and friends; the kids had a blast; I sat and rested and chatted.

We were there till almost 9:00 (parade was 10 am) so needless to say it was a very long day!

Mo fell asleep on the way home; Brady and Kevin went to the neighbor's to watch their fireworks display and I'm watching through the window, catching up on e-mail and uploading pics!

Happy 4th everyone
hugs
jessi

Each member of the Harris family has been grieving in their own way about Romie's death; and we're all doing much better (Daisy even started eating again).  We borrowed a book called DogHeaven from the library off of a recomendation from a friend; I think this has been quite helpful as well.  Up to now Mo has been pretty oblivious, today she asked where Romie lives (I just about cried) so I explained that Romie lives in Heaven with God and we read the book and talked about how happy Romie is there; she seemed to be ok with that.  Papa just had to put his dog down as well; not a good week in the family for dogs.  We have lots of other dogs in the family and the kids are really enjoying spending time with those dogs.  Aunt Carol is getting a new puppy this week for Raven to play with (they had to put down their other dog Spicolli a few months ago) so we can't wait to go see the new puppy.  In the mean time the three dogs are up in heaven playing together with Mom's old dog Sheba and hanging out with Nana and God.

We just finished the first session of swim lessons.  Mo has a few things to still work on in Level 1 and Brady has a few things to work on in Level 2.  I fully expect them to be in these levels for at least the whole summer; they are pretty young to be at these levels (at the "Gym" they both would have to be in a "parent and tot" class)!   It was pretty cold in the mornings these past two weeks; I'm impressed they got in and did so well; they both love to swim!  Brady can jump off the board and swim to the wall.  Mo is just tall enough to walk around the shallow end, she can dunk her own head under water, and all sorts of other "beginning skills".  The big thing they both need to work on is "their back" which understandable; that is the part where you feel like you have less "control" so it's scarier.

Life for me is about the same; constant tests and treatments.  Good days and bad.  In between all that I'm chasing the kids and enjoying when they're cute and trying to play referee when they're at each other's throats.  I hired the neighbor girl who babysits them and her sister to be my Mother's helper a few hours a day twice a week!  It has me spoiled; I could actually clean and have some time to myself without the kids climbing all over me or trying to kill each other; I had much more patience with the kids and got to enjoy our time together more!  I got much more done around the house; better quality time with the kids; and some rest!  Too bad I can't afford a full-time nanny/housekeeper/personal assistant; although I think everyone needs one of those not just "poor ol' me".

Brady finished soccer, has started T-ball.  One of three practices was canceled due to rain and Opening Day was canceled due to rain.  They are going to try to reschedule this week since there aren't any games scheduled and most people will be around during the week.

We were contemplating going up north for the week, now we're on a "wait and see" basis for the weekend.  Kevin has had to cancel enough outings due to my "bad days" that he doesn't want to commit to anything; can't say that I blame him.  So I do hope that we go up north for the holiday; although it seems like most of the family is up there this weekend and not next weekend.  If we don't go our neighbor puts on a nice fireworks display and we watched the Detroit/Canada fireworks last week.  Our neighborhood association also throws a big party at the clubhouse.  We lucked out for Memorial Weekend, we got back from our weekend up north in time to go to the association party (we did miss the parade though).

Mom is home from the hospital and doing better; although she wasn't home more than two days when she started getting new symptoms!  I made her an appointment at Integrative Medicine at the Cancer Center (for cancer patients/survivors and their families) for massage and accupuncture.  She is also seeing a specialist next week and her doctor has decided this is beyond his capabilities.  Heather and I took her to her pool (across the street) the other day so she could get in the water and let the cool water help her body feel better.  The kids also had a great time playing; and Heather did most of the Mo watch so I got to sun myself a bit!  The boards are much higher there than our pool; so Brady needed some help but he did a really good job!  Max gave Brady his old flippers, they had a blast swimming around with them on till the lifeguards took them away (rules rules rules, always changing...)

The four of us went to a Tiger's game a few weeks ago; we bumped into Uncle Dean there as well.  Mo claimed she had to poop or pee about every 10 minutes so she could get up and walk around; I have no interest in taking her to any more Tiger games for quite a while.  She did enjoy the carosel though.       www.tigers.com/fanfoto         6/14/08 Gallery 29 (DSC-0354) and Gallery 36 (DSC-0040, DSC-0041)

As always, lots of family parties as we celebrate everyone's birthday in my Mom's family; and with 5 kids, 3 step kids and hubby there are a lot of celebrations on top of all the other holidays!

I missed Race for the Cure this year as Mo was up all night sick the night before (Brady the previous day); but I raised over $1,000 so that is very cool!

Kevin is off golfing today; went out with Papa Friday night; and I took the kids out to see Aunt Heather a few nights ago so he got a night alone a few days ago!  He so needs some "him" time; he had to cancel his guys weekend 'cause of me and another guy's outing 'casuse of me.  So I'm glad he's getting out, he not only needs it but deserves it!  We're going to go visit Papa tonight if he's up to it.

Hugs

Jessi

Hey Everybody

Monday was the 2-year anniversary of my cancer diagnosis; I am a 2 year survivor! Woo hoo! Since inflammatory breast cancer has a 40% 5-year survival rate and I had cancer metastasisto my bone and liver this is an extra special milestone for me (http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_Is_bone_metastasis_66.asp)! I have been "disease free" (stage IV/NED) since completion of chemo, so about 18 months now!!!! I do have some "low level uptake" seen on the PET/CT scans in my ribs and sternum but the doctors feel it is more likely healing bone tissue rather than metastasis. Still taking Herceptin (to prevent cancer from comming back) every 3 weeks and Zometa (to heal bones) every 6 weeks. These are IV drugs that I go to the doctors office to receive. Thankfully I have a chemo port (http://www.breastcancer.org/pictures/treatment/chemo_port.jsp) so they don't have to poke my (very scar-tissued filled) veins. Side effects are mild nausea, muscle ache, bone ache, and fatigue. I have lots of perscriptions to help control these. I also have arthritis throughout my spine and neck (previous tumor locations) and get chronic headaches which currently are pretty well under control. So I'm no longer the hyper bouncy spaz I use to be (although to talk to me on the phone you wouldn't guess it). I havne't had a heart scan in a while (MUGA); but the last one was normal and the doc gives me regular check-ups and everything looks good. He doesn't want to burn me out with all the tests (too late) so since I'm so healthy he isn't following the every 3-mos standard (Herceptin can cause congestive heart failure). I "graduated" from my lymphedema doc; I'm doing such a good job of controlling my "arm swelling" that I don't have to go in for regular check-ups anymore, just if I have a problem. One less doc to go to, woo hoo. I was doing accupuncture to help control treatment side effects, but it didn't seem to help with that though. It did however help when my fatigue and pain level got out of control; so I am no longer seeing this doc on a regular basis either.

The kids are growing up so fast. Brady just turned 5; he can ride his bike without training wheels and learned how to push/pump himself on the swing. He can hit a baseball off of a pitch and is working on his catching/throwing skills. We're working on tying his shoes and he is back in the water being a little fish. He had a great soccer season; he was the best goalie on the team (and one of the youngest kids as well) and it looks like he'll be a great blocker in football based off of his defense skills (I was really worried he was going to get a penalty called on him). He starts t-ball and swim lessons next week. In the fall he starts kindergarten, he can't wait! Morgan will be 3 in August, she just finished up dance class and is too cute! She was the best in her class and ofcourse I forgot my camera for the last day when they preformed their bumble bee dance (she was the only one to do the whole dance and sing), not even my phone on me! She can't wait to start preschool in the fall; and also wants to take gymnastics and soccer on top of dance class (pacing myself...). We are working on returning back to being potty trained, she does a great job when we're at the pool so we may have to spend all day at the pool this summer, such a hardship, she will be taking swim lessons as well which is really more just her personal play time with the lifeguards.

Kevin is still with ABB on the Dow contract. He's working from home with the occasional trip to Midland, MI and Houston, TX. He occasionally gets out with buddies for wallyball, golf, or the occasional sporting event. We're looking forward to lots of fun family trips upnorth to "the property" at Bear Lake Township in Kalkaska and trying to plan a vacation on top of that as well. The kids both want to move upnorth, they love playing in the woods all day with their cousins and visiting all the "moms and grandmas" to see who has the best goodies.

I'm a "group leader" for the breast cancer support group at http://www.mdjunction.com/. It feels good to help guide women and support them on this unfortunate journey. I had an article I wrote published on the site (link below along with my two blogs) and there is a chapter about me (along with a quote from my Dad) in a newly released book (see link below). The book itself isn't all that impressive; but I've never been published before. I have good and bad days; but overall I'm doing pretty darn well. Monday was a really good day (just getting over a nasty sinus infection so I've been sleeping a lot lately), I walked the dog twice, took the kids to the pool, played outside, did dishes and laundry, grilled dinner, ... you get the point. Anyway, Tuesday after Morgan's last dance class I looked out the window and suddenly had a huge muscle spasm in my back which left me on the couch the rest of the day taking muscle relaxers. I'm feeling much better today but sore. As I've said a million times before, I don't do well with being delicate and need to learn how to pace myself!

blog: http://360.yahoo.com/jessica_harris9

blog: http://www.myspace.com/ned_rocks

article: http://www.mdjunction.com/breast-cancer/articles/too-young-for-breast-cancer

book: http://www.authorhouse.com/BookStore/ItemDetail~bookid~45777.aspx

The doc called to report my brain MRI findings, it showed positive for migranes.  Thankfully, no cancer.  Funny thing, I had to specifically ask if there was any cancer on the film.  When they tell you what is on the scan, sometimes they forget to tell you what isn't in the scan, which leads into the really scary one!

So the next week they call back with my PET scan results; and tell me that there is low level uptake on 3 ribs (which is probably from the healed fractures) and the sternum.  So I informed the NP that those "fractures" were actually resolved tumors.  I asked why the scans weren't compared to my old ones, she didn't know.  So we both agreed that I needed to call the breast center and make sure they send my old scans from a different hospital over to nuc med. 

The breast cancer just gave me the run-around, so the next day I called my doc and the nurses said the NP is out and will call me back the next day.  So when she does (I've been crying for two days now thinking the cancer is back meaning my body has built up an immunity to herceptin) she explains that the "uptake" levels are so low its probably not cancer, they would be 4 times higher if they were cancer.  Then she did say I had to make sure those films got to nuc med (errr, grumble).  So I called the breast center again, then I called nuc med.  Nuc Med also was riding the breast center about my films!  We finally gave up and I requested my films again from the old hospital!  So now I'm just waiting to get the old films so I can have them compared to the new.  But once again, the NP should have started off with "we don't see any cancer, but we do see some low-level uptake"!

I went back and looked at my old scan reports, they did show some low-level uptake like the current ones, and at that time doc declared me stage IV/NED.  So it sounds like I'm still in the clear but that won't be confirmed until we compare the scans.

So for all of you getting test results, specifically ask the question "so what does that mean" and "did they see any cancer".  Don't assume like me, you'll be freaking out unnecessarily.

 I also need to take all my scans to my GP 'cause it uncovered all sorts of other health issues (like the migrane) that the oncologist isn't going to deal with!

Be your own health advocate!

So when I was going through treatment I heard that IBC cases can get reconstruction after being cancer free for a year; my rad oncologist told me as early as 6-mos post radiation.  So, I'mover a year out of chemo and cancer free, over 6-mos post rad and FIGHTING to be able to get reconstructions surgery.   UGHHHHH

I really wanted to include a prophylatic left mastectomy in with my reconstruction; so I had to do a consult with the breast surgeon in addition to the plastic surgeon (mistake #1).  So the breast surgeon said she was will ing to do (I had previously been told by the oncologists that there is no medical reason for this since it won't increase my life expetency) as long as I had a new baseline matistatic study come back clean (new PET scan; haven't had one in over a year).

So she presented my case to the tumor review board, those SOBs said NO to the mastectomy and don't want me to get the reconstruction because of the high liklihood that the cancer will come back.  I HATE STATISTICS!!!!  Anyway; my doctors stood up for me and said on my treatment I had a high liklihood of long term survival (excuse me 10-20 years is not enough, ok I should be greatful it is better than 18 mos!) and that if this improved my quality of life they fully support it.  Some other dill-hole oncologist (not even specilizing in bc) stood up and insisted on a brain MRI as well which my oncologist thinks is ridiculous but didn't fight it.  So I'm off for more tests!  I know its best to get the tests done; but I just don't like the constant "speed bumps" to try to frustrate me out of getting the surgery done!  I'm 33 years old and use to look like a frickin play-boy bunny; now I don't like my hubby to see me naked and it isn't the baby-fat!  I'm not a vain person, but I feel like a bit of a sun-dried boob-less freak these days.

Ok, so I vented and everything is going to be fine.  They'll do the tests, everything will be good and hopefully they won't try to block my surgery again.  My oncologist wrote a letter to the plastic surgeon, breast surgeon,and rad oncologist saying he supported the surgery so hopefully there won't be any further problems.

On a separate note the doc says the arthritis that appeared in my neck on the scans after the tumor resolved says it isn't related to the cancer.  But we do have to keep an eye on the pain  since that would be a symptom of recurrance; but so far it isn't acting like cancer and turned up as arthritis on a x-ray!  Ahh, the life of the cancer survivor!  Oh well, at least I'm disease free!

http://www.kodakgallery.com/I.jsp?c=5exioji7.8s7imrg7&x=0&y=d1v4b2

Hey everyone; life is going well.  We had a big snow storm Sunday; since they don't plow side streets in Novi we were basically snowed in with the foot of snow.  One of our neighbors lost control of his car and ended up in the ditch; many of the neighbors pitched in and had him back on the road quickly though.  Another neighbor hooked a ski line to his 4X4 and took his "big kids" snow boarding down the side streets.  My kids just sled down the driveway and had a blast.  No snowmen though, this wasn't good packing snow.  Believe me, we've been trying ever since to make one!

My pain level is up a bit; actually dipping into the vicodin stash a little (per doctor's instructions).  I'm having a blast getting ready for Christmas and watching the kids who are growing up way too fast.  Morgan is 4-days no potty accidents!  She is enjoying the ice cream sandwich rewards immensely.  The kids made cookies this morning for Brady's school Christmas party; Mo is pretty good with a rolling pin and didn't hit her brother once!  Brady loves his new soccer class and is doing really well.  He also is getting pretty good penmanship and can write his name.  Kevin is enjoying the slow down at work; he gets to go to the Christmas party today and was in charge of cookie making this morning.  He's discovered the stock market and is having a lot of fun researching and investing.  Now he has something other than sports to talk about!

Hope everyone has a happy holiday!
Hugs
Jessi

1. My compressed nerve in my neck is healing well; doc encourages aerobic exercise and strength training
2. Oncologist says I'm doing really well (see rad oncol later this week)
3. New plan for breast reconstruction surgery for me!!!!!

• I am not a candidate for the TRAM flap that was originally thought to be done due to my bad back and neck (http://www.breastcancer.org/tips/reconstruction/types/tram.jsp) 
• New plan is a combo surgery;
• PHASE 1: Plastic surgeon will do a latissimus flap while I'm laying on my side; (kind of like doing a skin graft because my skin isn't elastic enough to stretch for implants) ( http://www.breastcancer.org/tips/reconstruction/types/latdors.jsp)
• PHASE 2: The breast surgeon will do a left mastectomy while I'm laying on my back; http://www.breastcancer.org/pictures/treatment/skin_sparing_mastectomy/index.jsp)
• PHASE 3: The plastic surgeon will come back in and place spacers in at the two breast locations (I'll be in the hospital 1-2 days; I'll have a pain pump and drains).
• PHASE 4: A few weeks after surgery they will begin gradually filling the spacers every few weeks (this will be painful).
• PHASE 5: Replacing the spacers with silicone implants (about 3-4 months after Phase 3, I think this is a day-stay surgery)(http://www.breastcancer.org/tips/reconstruction/types/silic_safe.jsp)
• PHASE 6: Out-patient surgery to make nipples (optional step)
• PHASE 7: tatooing nipples (this will be about a year after the initial surgery)

The most likely risks are pain from spacers and implants (especially since my ribs already hurt from radiation), scar tissue (which would lead to another surgery to fix), and infection (risk with any surgery).  The unlikely risks are implant rupture; there is no increased risk for silicone over saline.  The implants will need to be relpaced every 10-15 years.

This is the best way to obtain symmetry for me; there will be quite a bit of skin discoloration due to back skin vs. chest skin but my skin is permanently "tanned/burned" from radiation anyway.  There will be scars, they'll fade over time probably the worse being on my back.

My biggest concerns was 1) change in size due to weight loss/gain, 2) different looking breasts/nipples due to one being an implant/reconstructed and the other being reduced, and 3) potential future surgeries to prevent/treat future reccurance.  So the left mastectomy solved all of these.  My other concern was cutting into stomach muscle for the TRAM flap effecting my back; obviously this was a concern of the doctor's as well.

I don't know when surgery will be, the surgeons are coordinating their schedules.  I do know that I'll be on bed rest for about two weeks and will need a lot of help during recovery.  I'll also need a lot of babysitting help for all the extra doctors visits during the next year.  So we'll try to keep everyone posted as much as possible!

Hugs - Jessi

December 9th will be 18 months from the day the surgeon walked out of my biopsy and informed my husband that I had inflammatory breast cancer (IBC) and I probably had  about 18 months to live.

 Thank God and science that I had HER2/neu amplification and am a candidate for the drug Herceptin.  After 6 months of chemo (in addition to Herceptin and Aredia) I was cancer free and have remained so for a year.

After chemo they did surgery and radiation; I have not so great permanent dibilitating side effects from that.  In addition since my cancer was the most aggressive form of breast cancer and had spread outside of the lymph nodes to my liver and skeletal system (there were over 30 indiviudal tumors identified on the original PET/CT scan) I will never be considered "cured" and thus will never be taken off of cancer treatments.  The two drugs I continue to take (Herceptin and Zometa) cause bone pain, muscle pain, fatigue, and nausea. 

Looking back; 18 months is a short amount of time to live; but a very long amount of time to survive.   Never take life for granted!  I look forward to many more 18 months.

Hugs

Jessi

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Above is a linkfor a book that I will be in (Chapter 10); it's not finished yet but keep an eye out!

I'm feeling better; but still not 100% yet.  Kevin is back up in Midland for a few days and has been working over 80 hours a week lately!  So we're all a little burned out and can't wait for this project to be over so we can relax.  The kids are cute as always; although Morgan is testing out the terrible twos territory.  She is teething and has an ear infection; and is trying to wean off of naps!  Why are my babies trying to grow up so fast???  I have a double treatment the day before Thanksgiving; so I'm expecting to be very horizontal on Thanksgiving!

I made a brillant discovery; candy makes you fat and your face break out!  Yeah, remember the days when I use to be smart???  Glad I'm not trying to do my old engineering jobs anymore (that would be a disaster as I was expected to know epa and osha laws)!  I'm lucky I remember the way to drop Brady off at school (he got very mad at me the other day when I turned the wrong way).

Hugs - Jessi

Hey all

I was feeling so good; skipped a zometa treatment; exercising, doing physical therapy.  Went in for my herceptin treatment and have been feeling not so great ever since! Energy is way down, pain is way up!  Now that the weather is getting cold I'm getting a lot more sinus problems/nose bleeds and splitting skin (worse than pre-chemo).  I hate being delicate.  Oh well, at least I'm still going!  I did some yard work; boy am I feeling that!  How many times do I have to say that before I learn my lesson!  So once again; I'm working on pacing myself!

Have been doing some visiting and getting out.  Morgan has an ear infection but seems to be responding well to the antibiotics (i.e. she is sleeping through the night); but now the snot is kicking in!  Had a blast with Halloween.

 

 

My son Brady (4) was in the emergency room the other night with croup.  Since then the croup is better, but he is still coughing and has a fever.  He is on antibiotics, but I'm guessingwe'll be in to see the pediatrician before the week is over.

 My daughter Morgan (2) has the cough and is working on a elevated temperature which is creeping up near the "fever range".

I also have a cough and stuffed sinuses; and some green gook; but no fever yet.  My neighbor has strep throat which is supposedly going around with the croup.  So hopefully we don't get that, but I think I may have a sinus infection.

When I was on chemo it seems like I was constantly battling sinus infections.  I no longer have low white blood cell counts; but I think treatments have left me with a weakened immune system even if my blood counts are normal!

As we are entering the cold/flu season I hope everyone is washing their hands and reminding anyone that is potentially contagious to stay away!  ER visits and hospitalizations are not fun!

I've been skipping PT all week and skipped my zometa infusion today (doc said its ok as long as I don't skip herceptin).  So hopefully some rest will help, although I've been eating entirely too much ice cream since it feels so good on my throat (at least that is what I tell myself!) 

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My hubby and I are celebrating our 7 year wedding anniversary today!  Last night we went on a date; today he took the kids to his brother's house so I could have some much needed ME time!  I've been with Kevin over 10 years now, we just keep growing closer despite road bumps along the way!  It's very cool to think that a short 16 months ago we were questioning whether or not I would be here today and not only am I here, but I'm healthy and disease free!

Ugh, I woke up at 4 am and could not fall back asleep!  My four year old crawled into bed with us around 5 ish - I gave up and got up.  My neck and back are killing me!  I think threedays in a row of physical therapy left me with some sore muscles (pinched nerve/arthritis/bone out of place in my neck causing arm/finger tinglies and some minor finger numbness - leftovers from the mets in my neck)!  So I slapped on some muscle run, took a handful of advil, and am trying to wake up enough to make the trek downstairs to make coffee!  I have been doing an excellent job exercising though.   I saw two of my docs a few weeks ago and they really stressed the importance of healthy diet and exercise and were not pleased that I gained weight (I like my sweets, and if PMS is bad, well, ...)!  I'm not allowed to diet though, just have to be healthy!

I set up some exercise equipment in the basement near the kids play-area.  They play, I work out.  If they need me, I'm there.  The baby (two) loves to jump on her trampoline while I walk on the treadmill!  I usually have to help her dress a few dolls while I'm on the treadmill, I'm getting so I can do that without stopping my workout - multitasking at its best! 

My family went to Orlando, FL for vacation!  We've also taken several small trips to our family property this summer.  We were long overdue for a big trip!  We spent 5 days in amusementparks (Disney and Sea World) and also went to Lakeland to see the summer home of the Detroit Tigers!  It was hot and humid, and we had a blast.  A little too much stimulation, but that's okay.  After a year of invasive breast cancer treatment, we all needed some sweet indulgence!

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Now we're just getting back into the groove of things.  Hubby is working like crazy again.  My four year old is back at preschool, started sports class and is in speech therapy.  He's having some change in behavior probably due to Daddy working so much, so I'm trying to give him extra attention.  The toddler is into everything and loving life!  We're all taking turns having the flu, can't wait till that's over!  Celebrated my 33rd birthday, still cancer free, treatment sucks but hey I'm alive!  Starting physical therapy for the compressed nerve and arthritis in my neck.  Hopefully this will relieve some of the numbness/pain in my neck and arm that I had accepted as something I'd have to live with.  My lymphedema is under control and the pain/numbness is still there so they think it's a compressed nerve.  Did an x-ray and found the arthritis and a bone out of place.  I had a tumor there and once it was resolved the arthritis showed up!  I have been exercising which is helping with overall pain management (leftover from chemo/radiation/surgery and from current treatment).  Some days my memory is better than others.  Docs stressed importance of my eating healthy and exercising to control my weight (no dieting though) and rehab doc wants me to start light strength training!  Being healthy is a full time job!  Balancing kids, treatment, exercise, and house has been a challenge!  Can't imagine tossing in a job in the future, we'll worry about that later!