• JNW's Avatar

    JNW posted an update

    Well, once I finally got a chance to talk with my onc, she cleared me for administering all modalities for cancer patients and survivors, so long as I get an onc note. I'm over two years out, and have mine on my phone. I think science is finally catching up with esthetics as the number of items that are contraindicated for patients and survivors are going down rapidly. Lymphadema and allergic reactions are the biggies to look out for. That makes me happy. I really like the idea of being about to pamper some people who could really use it. Granted, the more I learn, though, the more I see that there are others who could use this. Perhaps, I find some cash cow service, then use the proceeds to help cancer patients and survivors with the proceeds.

  • JNW's Avatar

    JNW posted an update

    Yesterday, I finally had what should be the last surgery for my reconstruction. All seemed to go well and tomorrow I get to unwrap the bandages and see what's up. My PS also removed the dog ears from my DIEP flap and the worst of the scarring. I've still got some scrrenings, but feel like I'm finally putting cancer in the rearview mirror. I'm quite pleased thatnmy PS worked with me, so I've got some downtime before I start school and a new career. The next toughest item will be tattooing - one for reconstruction and one memorial. I've actually lost count of the number of tattoos I already have, so that shouldn't be too tough. Whew!

  • JNW's Avatar

    JNW posted an update

    Well, while my radiation enhanced burn is now closed skin, my PS informed me that it was so large and pulled in, it's going to be more like six months before we can go back to reconstruction. On one hand, this means I will have the time to finish the makeup artistry program, but I had also been planning on studying esthetics, but then the surgery would fall during that program. I know that technically, I could go for all my education, then go back to reconstruction, but it's so easy to just put things like that off when you're working and it hurts. So, that was a little disappointing. My PS suggested that this will give me a chance to get "back into life", but it also means I'll just be pushing off another pause and potential issues with education and starting a new career. Sad face.

    4 Comments
    • JNW's Avatar
      JNW

      Thanks for that comment. I'm in pretty deep. I had DIEP surgery, so I've got a "normal" breast and a "Frankenbreast".Had I all to do it over again, I'd go for flat, but got talked into reconstruction. Last year, I had DIEP flap surgery, so I'm feeling in for a penny, in for a pound

      over 1 year ago
    • Notboring's Avatar
      Notboring

      They told me hat, too! First the expander which did not work and the a transflap. The cancer came back bringing a lot of company in the same breast ...currently on my third in 7 years, after this its clinical trials and prayers. I'll pray for positive things for you.

      over 1 year ago
    • JNW's Avatar
      JNW

      Sounds like we had similar experiences. I'm sorry that you have to go through this. I'll keep you in my thoughts.

      over 1 year ago
  • JNW's Avatar

    JNW posted an update

    After a couple of months waiting for a burn on my radiation site to heal, I'm getting ready to head to my PS and hopefully plan my last reconstruction surgery. After that, I can actually focus on and plan for my next career. Boy, I'm so ready this. Jumping completely back into life is intimidating, but exciting, too. Here's hoping 2016 is the year of no ER visits and finally getting my commemorative tattoo!

    2 Comments
    • geekling's Avatar
      geekling

      Excitement is contagious!!

      over 1 year ago
    • JNW's Avatar
      JNW

      Thanks for the words of encouragement!

      over 1 year ago
  • JNW's Avatar

    JNW posted an update

    Well, several weeks in and the burn is healing. Having never had a burn this size before, it's been a fascinating and also disturbing lesson regarding how skin gets created, particularly on irradiated skin. I'm still a little bummed that it's set back my final surgery, but at least I'm able to contemplate contemplate a final surgery.

    It's weird to be organizing surgery and deal with my job loss and all the details entailed with that.

  • JNW's Avatar

    JNW posted an update

    During my DIEP flap flap, my surgeon tucked away fat in several places. A lot of the extra died, which is OK as it was extra and I still have plenty of fat elsewhere should it be needed once my PS completes my reconstruction. Concerned about the golf ball size hard place, I had my surgeon check it out. She said gentle warmth might help break it up and decrease some of the pain it was causing. I can't feel anything on that partially reconstructed breast, so I was super careful with the gel pack, heating it until it felt warm to my hand, then letting it cool until it felt only warm on the inside of my upper arm. I then wrapped it in a towel and put it under my arm. Inner arm was still happy, so about 15 minutes later, I removed the gel pack and all the skin it touched on my partially reconstructed breast. *sigh* So, called the 24/7 hotline and the nurse agreed with my opinion that it was a shallow second degree burn and treat it like that. The next day, I called my surgeon's nurse and she agreed. Late Friday night, there was an area that looked white. Worried about third degree burns and infection, we hit the closest urgent care facility. They immediately told me to go to ER. I think I could go to that UC facility with a sprained ankle and they'd bounce me to ER in case chemo or radiation caused the sprain. 8 hours at the ER and they determined that I've got a second degree burn and I was treating it appropriately. Radiation: the gift that keeps giving. They modified my treatment a smidge and it's just as bad. So, Wednesday, I see my surgeon again.I'm also taking anti inflammatory herbs and the works. Apparently, there are other treatment options. This puts me in ER every other month for the past six months. I still don't have a super power from radiation, unless it's getting sent to ER, which is a suck super power! And, I keep ending up in ER. I thought this was supposed to be the time when health things settle. *grumble* Still waiting for that, too! I'm sure it'll happen at some point, though I'm a little jittery to when that will actually be. Watch my transition to survivor and starting work take longer than my treatment! ;-)

  • JNW's Avatar

    JNW posted an update

    Well, this week will be the decider if I go back on Friday, or sometime later to work. I've been quite diligent since my DIEP flap, trying to walk that line of being active and being kind to my body. While she's not really been involved with it, I see me onc before microsurgeon and ask for more time and I've moved pallitive care up a soon as I can. Walking 6 blocks wipes me out, my torso still feels like ground beef, and I'm sleeping about 12 hours a day or more. Considering, my sleep meds were only nabbing me 5 or 6 hours of sleep, my frequent surprise naps of up to 8 hours without sleep meds is ...hmmm ... Not so much worrisome as a red flag. Usually, I'm only able to sleep without my sleep meds unless I'm very sick, so I think we should check for illness and just plain give me some more time. Man, I so hope they don't put me on the road immediately. I so love my blue hair! I feel too unmotivated to deal with wigs. *sigh*

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      It sounds like your up then down, all over the place! We hope you get stable soon.

      about 2 years ago
    • JNW's Avatar
      JNW

      Yeah. I really think this is my body telling me I stay down. And, for the most part I'm doing it. I'm eating right, doing gentle exercise, then seeping every chance I get. As a long term insomniac, I think sleek is probably the kindest thing in can do for my body. I'll get there. Right now no major surgeries on the schedule. I call that progress!

      about 2 years ago
  • JNW's Avatar

    JNW posted an update

    Had my almost 6 week check up on my DIEP flap. My belly button is finally acting like one and doesn't seem to have any more sutures to spit out. I may have some dead fat at the area they took the fat. It's pretty small and should disapate on it's own. Now, we're trying to get the pain under control. New med configuration. Man, being in pain and being an insomniac is a real pain!

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      I understand your situation, I can't stand it when I can't sleep. I have a great network of doctors and they are more than ready to change or add to my meds if needed to control my pain and help sleep. Sometimes though, you just have to heal up enough to allow your body to let you sleep. We wish you the best.

      about 2 years ago
    • JNW's Avatar
      JNW

      Thanks for the kind wishes. I keep hoping someday neurology and insomnia will catch up with my wacky brain.when I'm already taking sleep meds that would put down an elephant and practice near perfect sleep hygiene, sleep meds get so complicated. Right now docs are more willing to make me sleep, so I can hopefully get control of their the pain. Let's hope so! I don't like having a pharmacy it pain meds. ;-)

      about 2 years ago
  • JNW's Avatar

    JNW posted an update

    Had a bit of a break down today. USPS kind of triggered it, since in my neighborhood times and days open are subject to frequent change. The pain levels from my DIEP flap haven't been getting much better, so I was kind of a wreck. Every time I think I'm almost there, something. setup comes up. My partner is taking to get errands and doc appoints run and I'm going to reschedule someone stuff so hopefully I cannot are 1 quite week before I return to work and find out if I will even have a job. I realize that is been living at pain 5/6, not wanting to deal with certain side effects or be trouble, which is pretty messer up. I know I'll tell others to advocate for their health in a heart beat, but fell down on the job for me. I'm not trying to be tough or anything, but somehow got this idea that for me 7 and above is the only time I should say something. I know what I *need* to do, but not sure how to do it.

    2 Comments
    • happydyad's Avatar
      happydyad

      I am so sorry this hurricane is swirling through your life right now. I understand the anxieties of returning to work, setting goals for ourselves whether as to pain thresholds or just a simple errand to be done only to find it all falling apart due to something beyond our control. Take strength from the great gift of your relationship with your partner. Go slowly at work and be gentle with yourself. It is a difficult time but the fact you are even able to think of returning to work is a good sign. Little things that eased my return to work were that I returned to work wearing different, less restrictive clothing than previously and I bought a little electric teapot to have at my desk so I could take a break without ever leaving my desk. My teapot, tea bags and tea cup saved my sanity. Find a way to have a little breathing space in your day. Hopefully you were able to leave under FMLA but if not just take a deep breath, find out what awaits you at work and go forward as best you can. I was able to beg off actually meeting with clients for a few weeks but when I did begin that I found that many had also been touched by breast cancer. I started to feel like a one woman outreach program but it was healing in some ways too. Love yourself through all of it. This whole cancer thing is just a speed bump not an insurmountable mountain. Love and hugs for you on your journey! Judy in Ky

      about 2 years ago
    • JNW's Avatar
      JNW

      Thank you!

      about 2 years ago
  • JNW's Avatar

    JNW posted an update

    Maybe I still don't have a good idea of how surgeries will impact me, but I'm about three weeks out from my DIEP flap and it hurts like XXX! Everything looked good to my microsurgeon and her care manager are answering any questions. The only issue is that I'm still in a lot of pain and they feel like I should be further along. I'll chat with them again next week, but I can't imagine jumping into the IT consultant world, not being able to make it through a day without a nap, only make it through short walks, etc. Like missing the brass ring for every task I'll be expected to do. It's scary and funny at the same time. I kinda feel like the butt of a joke ... A zombie IT consultant shuffles onto client site. Not sure how that ends except with me being laid off or something. I *know* I should be working with HR, recruiters, career coaches, but it seems like every time I turn around, I'm just waking up.

    1 Comment
    • tessdirect's Avatar
      tessdirect

      while shorter recovery time than a tram flap you need at least 6 to 8 weeks to heal ... 3 weeks is still very early in the process ... take it slow!!

      about 2 years ago
  • JNW's Avatar

    JNW posted an update

    It's a little over a week since I had my DIEP flap surgery. I've been home since Tuesday. I was concerned about the pain, getting around the floor of my house that I do most of my living on, and particularly getting in and out of bed. I have some breakthrough pain, but it doesn't last too long and OTC pain reliever, layered over the Dilaudid works pretty well. When my surgeon suggested that before I was discharged, I rolled my eyes internally. I stand corrected! Having bedroom, bathroom, and kitchen on the same floor is a boon. While my mother and partner are at the ready to help me with the smallest thing, as I'm able, I take more independence. Small thing, but a big deal for me. Lastly, getting in and out of bed has become easy enough that I started forgetting to concentrate on the steps required and then changed we changed my bed set up as I don't need to be nearly as jack knifed as even when I came home and now I just get in and out of the bed carefully. I'm really pleased. Granted, taking a shower wipes out my energy, but I really didn't expect things to go this well. My goal for next week is to start gently pulling my shoulders back. I always feel like I'm making real progress when I can hold good posture. ;-)

  • JNW's Avatar

    JNW posted an update

    Just got home from hospital. I had the DIEP flap surgery. It went perfectly-better than I'd even expected. The recovery is tough, but I think I will be completely worth it in the end.

    4 Comments
    • Gabba's Avatar
      Gabba

      Good luck with the healing process...so glad the surgery is over...take good care of yourself.

      over 2 years ago
    • JNW's Avatar
      JNW

      Thanks @Lauren65 and @Gabba!

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Good to hear something went better than expected! That's always a bonus!

      over 2 years ago
  • JNW's Avatar

    JNW posted an update

    Countdown for my DIEP flap surgery! I had pre-op on Friday, then the surgery will be on 9/11. Boy, Emory Winship is dead serious about this. That actually helps me with anxiety. My most awesome mother is going to stay with me at the hospital, so when my brain is mush, she can advocate for me. I'll be happy to have this ridiculous recon fixed, but I really don't look forward to the drains. Almost there!

    3 Comments
    • Jouska's Avatar
      Jouska

      Best wishes for a successful surgery!

      over 2 years ago
    • JNW's Avatar
      JNW

      Thank you! I'm super lucky to be with one of the best cancer treatment centers and one of the best microsurgeons in the country. They'll take good care of me!

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Good luck tomorrow, we hope everything is smooth and easy.

      over 2 years ago
  • JNW's Avatar

    JNW posted an update

    I have diligently herding the squirrels of docs, HR, and disability to drop my recon revision of an implant and fat graphs originally planned to a DIEP flap procedure. It's been a nightmtledare with 4 docs involved, the disability manager suddenly being super harsh, and disability wanting a firm date. *sigh* Today I was able to finally confirm that one LTD paper has gone out and two more are on the way. I also confirmed that my surgeon is awaiting authorization from insurance and that my case is in the preauthorization stage. Scheduling went ahead and grabbed the closest slot of 9/11. Within a week, I should have everything settled. Thank Bob! I'm surely not looking forward to recovery, but I'd surely like to move further along with my recon, so I can consider when I'll be able to go back to work and getting on with life. Considering the length of time and pain for recovery, I'm surprisingly anxious to just get it done!

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      So how are things going right now, making any progress?

      over 2 years ago
    • JNW's Avatar
      JNW

      I am a go for the 11th! I shot be back to work by year's end! It's such a weight off my shoulders having everything in place. After this will be some tweaks, but those will be fast and outpatient, so not bad all!!

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Good news! Glad you're moving forward.

      over 2 years ago
  • JNW's Avatar

    JNW posted an update

    Good news, I think. I've got a consult with a surgeon that my PS suggested for a DIEP flap. At least things are still moving and once I make the decision of implant, DIEP flap, prophylactic mastectomy, then surgery will be ASAP. Breathe.

    4 Comments
    • JNW's Avatar
      JNW

      Thanks! The consult went well, so now just scheduling is needed. One step closer!

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Keep us posted, glad you are moving forward.

      over 2 years ago
    • JNW's Avatar
      JNW

      The microsurgeon is being scheduled now. I'm a bit disappointed that my PS and microsurgeon aren't able to work in tandem in my case, but we've got forward momentum going, so I can live with that.

      over 2 years ago
  • JNW's Avatar

    JNW posted an update

    Gearing up for the revision of my reconstruction. I'm amazed that insurance is covering most of it! Prior to that, my onc wants me to see all the doctors. She also has me scheduled for am MRI because of my history of neurological issues. Every new doc thinks they will solve my insomnia and this other infrequently occurring condition where I have issues with language and motor skills, that I've affectionately dubbed Brain Worms. I couldn't tell you how many MRI and CAT scans I'd had before cancer. The brain works have been diagnosed from hypochondria to an allergy to yellow dye #5 to complex migraines. Only one neurologist has given me a diagnosis about my insomnia-it's both onset and maintenance insomnia. Meaning I can't get to sleep and I can't stay asleep. So, for this new round of testing I just think, "Bless their hearts!" and want to pat their heads. Docs have been trying to work out why I have insomnia, why it's worse now, I've tried about every alternative approach, but if 20+ years of studying hasn't worked, I doubt that another MRI will show anything telling. Mind you, if it does I'll be thrilled. But, I'm mostly just getting completely in the fold with this hospital beyond cancer treatment. I'm not looking forward to the pain of another surgery, but this one should not only make me happier about my appearance, but also help with some of the pain long term. The more prescriptions I get rid of, the more pleased I am!

  • JNW's Avatar

    JNW posted an update

    Thanks to @geekling and @loLafolana, I got inspired to use that last banana before it was tooooo ripe. Just made a super decadant smoothie with almond milk, banana, PB2, and the last bit of some chocolate gelato in the freezer. Certainly, not the healthiest smoothie I've made, but considering you could hear both me and my partner frantically sucking the very last bits from our glasses, I'd say it was a success. Yum!

  • JNW's Avatar

    JNW posted an update

    Today, I was officially moved into survivorship. It was a mixed bag. In the past year and a half, I've been unexpectedly hospitalized three times. So, before we really settle into a screening rhythm, my new facility wants an MRI, annual exam, and an ob/gyn annual exam. While my bone density falls within the margins, onc was a bit perplexed that it was lower than expected, based on my food and exercise journals. That's a bit unnerving to me. This isn't just this facility, but docs aren't concerned about my chronic treatment resistant insomnia getting worse. I've been working on relaxation techniques and sleep hygiene for about 20 years. I had been feeling lucky with a string of 6 hours per night and it's gone down to 3, 4, or none. This started around when I switched to AIs, so feel inclined to look to that. Maybe when I get everything switched over to my new facility, I can get in with a neurologist or sleep specialist. I exercise 5 times/week, don't have caffeine, meditate daily, but show no signs of a sleep disorder. A long way back, I had a neurologist diagnosed me and said I just have crappy sleep. Normally, this would feel like par for the course, but I know I need sleep to heal. Meh. At least some progress was made today, so not all rainbows and unicorns, but not all suck, so I'll call it a win.

  • JNW's Avatar

    JNW posted an update

    Started my Memorial day weekend off with a blast ... In the ER. I'm a month out from the start of reconstruction, followed exactly what my old PS recommended, had my follow up and all seemed fine. Last night, I noticed a drop of liquid on my shirt. Being curious, I looked for the source, which was a small amount of discharge from one of the incisions from the revision on the noncancerous breast. I dutifully called the 24/7 nurse call line of my insurance, after checking for a fever and finding none. So, I was directed to urgent care. The moment they heard "cancer", they directed me to the ER. That was a marathon of 12 hours. The good news is that it was only cellulitis and I caught it very early. Antibiotics should knock it out. However, we did find a hard spot where incisions met. It could just be fluid from the surgery or it could be an abscess. Tuesday I'll start on the merry go round of talking with my PS, Onc, and getting some more tests done. The weird thing was that it happened so fast. Thursday, no swelling, no hard spot, through I kept telling my partner, PS, and Onc that something didn't seem right. I don't think I was given incorrect care or listening by any involved, since there were no symptoms until the day I went to the ER. The on-call PS, told me that while cellulitis is a thing, it's not common. Geez. I'm touring all of the ERs of Atlanta as it seems that if there is a rare side effect or something that could go wrong, it happens to my. I asked, but unfortunately there isn't a place in the various hospitals and ERs to mark me as a jinx or just a hot mess. ;-)

    10 Comments
    • maylonie's Avatar
      maylonie

      JNW, I hope the cephalexin helps. Let us know. Good luck, glad you caught it early.

      over 2 years ago
    • JNW's Avatar
      JNW

      After the marathon ER experience, I saw my PS and onc the next week day. Turns out I had a triple whammy of cellulitis, dermatitis, slight allergy to the antibiotics, and some issues with my new AI. So, antibiotics, steroids, and some lavender oil did the trick. Here's hoping things stay calm until the revision of my recon. Thanks for the good wishes!

      over 2 years ago
    • JNW's Avatar
      JNW

      @maylonie I didn't tolerate the cephlexin well, but better than sulfas by far.

      over 2 years ago
  • JNW's Avatar

    JNW posted an update

    Well, a week of antibiotics and my cellulitis has only gotten worse. I'll be seeing my PS tomorrow. Here's hoping they'll find a decent solution.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      We hope everything gets better, let us know what they tell you, this seems to be a common problem.

      over 2 years ago
    • JNW's Avatar
      JNW

      Sorry, I got so caught up in planning to revise my recon. So, I ended up with a triple whammy of cellulitis, dermatitis, and rash from my new AI. A round of antibiotics, steroids and vitamin E oil with a bit of lavender took care of it all. It took about three weeks, but things seem to be smoothly now. Thanks for asking. I think my body was just tired and decided to voice it's opinion about the last year and a half. ;-)

      over 2 years ago