Part 3 Breast cancer, Lymphedema and Lymph node transfer by Lisa Jenni

imageONE EXCEPTION…. By Lisa Jenni

If I have to point out one single item of the long list of treatments and garments, the thickly padded JOVI-Sleeve has turned out to be my lifesaver!

Every night, up to the night before LNT surgery, I was wearing this sleeve to return most of the fluids accumulated during the day. It kept my arm soft, but it still couldn’t stop some fibrosis on the lower outside of my left elbow and the back of my hand, and the climbing overall accumulation of fluids. My PT shrugged her, called it matching “Popeye”-arm and said: “that’s the way it is, you got to deal with it” On a personal level, this has been one red thread through the years, resignation and fake empathy on the caregiver’s side.

I cannot overstate how ecstatic I became when I found the video conference/symposium from Lymphatic Research Foundation in June 2013, where Dr. Chang was one of the featured doctors. I watched the video links over and over and was immediately convinced this is my Tour du Liberté from Lymphedema! My oncologist at once contacted the hospital in Houston, but only got the devastating return that Dr. Chang wouldn’t take new patients…
…never say never, – a few weeks later in August, I got an excited call from my Dr.’s office saying I must call for an appointment with Dr. Chang at the University of Chicago Hospital, where he relocated recently.

October 21, 2013:
I was seeing Dr. Chang in his offices at UC Hospital. I was so pleasantly surprised what a friendly, warm and approachable person he is, quite funny and zero bad celebrity manners at all. He asked me about my history, examined my lymphedema arm and confirmed quickly that I am a good candidate, however not for the bypass surgery. My skin thickening (fibrosis) on my hand and lower arm has progressed too much. He classified my lymphedema as Stage 3 and recommended a full reconstructive lymph node transfer, which would ensure the best outcome. We agreed to send out for the insurance acceptance.

4 weeks later the insurance agreed to pay (minus my deductibles). The surgery was scheduled for Friday, Dec. 13, 5:30am, thinking – WOW, that’s early! Maybe it’s a good thing being first… After I had the fixed date, I arranged flights and hotel rooms for my husband and me. We had to travel at different times and days, so I was hacking away on my laptop like a travel agency.
Fortunately, my husband and I signed up for an additional employer-sponsored and tax-free healthcare account, which we’re going to tap in to pay the deductible and hopefully some of the travel expenses related to the prep and surgery. At least, my husbands’ flight came out of our airline award points. You gotta use what you can find!

December 10, 2013:
I flew from a freezer-cold Seattle into a even more freezing cold Chicago, where I had booked a hotel down town, so I could visit the Christkindlmarket on my day before surgery.

December 11, 2013:
The weeks before, I lined up all my pre-op appointments to this day, including the anesthesiologist, and measurements taken of the arm/hand by PT.
Dr. Chang drew with a black Sharpie lines where the incisions will be, took several photographs for documentation, and I signed all papers necessary. He also promised me to inject dye into my finger area, and depending what will be visible, he’ll perform micro-bypasses at my lower arm. And my Friday early morning surgery time has been pushed to 12noon, because he wanted to have as much open time as possible. – Much needed, turned out.

Friday, December 13:
I was so ready to be prepped for surgery, but some complications before my case were occupying the surgeons. Finally, by 2:30 pm, I was wheeled into the OR, and 6 ½ hours later woke up from the anesthesia. I guess, I’m a lucky person not being allergic or even sensitive to any of the many chemicals put into my body. The surgical team said everything went well. I was freezing cold, felt dehydrated, but so heartwarming happy and elated, beyond any description. IT has happened.

Day 2 post-op:
I observed the young assistance doctor opening my very lightly wrapped arm. He showed me 4 incisions with two successful bypasses at my wrist. I was tearing up, because I could already clearly see and feel the difference. The arm was so soft, lighter in weight and less in circumference as I could only achieve with the heavily padded JOVI sleeve plus wrapping on top of it for days in a row.

Day 3 post-op:
I was discharged from the hospital and my husband settled me into our comfortable hotel room not very far from the medical campus (Hyatt Place runs a free shuttle to/from the medical center). Now, I’m on pills for pain control and antibiotic, but besides the first 3 hours after the “moving”, the pain was well controlled.

Day 4 post-op:
The first visit with Dr. Chang went very well. He was pleased over the outcome, the stitches are holding well, so the scarring should be minimal (we’re still talking major incisions). He was able to remove the JP drain at the axillary, and instructed me to NOT put any pressure or pull on the surgical site were the new lymph nodes have been implanted. I’m not to lift my arm more than about 33 degrees for the next two weeks. The lymph nodes should have settled in by 6 weeks after surgery.

Day 7 post-op:
I wake up every morning with a smile on my face, realizing my dream has come true. My body finally will recover from the horrible side effects of radical breast cancer treatment. The constant drain and battle is over. I do not care about any of the to expecting scars; I’ll wear them like a diamond necklace (funny, the price might be the same ;-))

The donor site incision’s drainage keeps weeping way too much fluid to get the drain removed. However the liquid is rather yellowish-clear, not bloody and I’m getting used to the thought to fly home to Seattle with the JP drain at my collarbone still attached. – Minor sideshow, no big deal, or maybe even a good thing as it reminds me to be very, very gentle with my body as I’m traveling home. Besides an occasional lightheadedness walling up, I’m feeling so well, it’s almost too easy to get into old natural routines.

This has been a long and dark journey. It ripped me out of the happy life I knew with brutal force, made me depressed and tearful, and it’s now time to be closed happy and tearful. I know it’ll all be good, I trust. Thank you, Dr. Chang.

Thank you so much Lisa for sharing your journey with us…. Now to relax and heal… This is a link to Lisa’s Blog if you would like to read more from Lisa and enjoy her wonderful art works… http://think-quilts.com/

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12 thoughts on “Part 3 Breast cancer, Lymphedema and Lymph node transfer by Lisa Jenni

  1. What a wonderful trilogy! I hope the healing is steady but strong for you, Lisa! thank you for sharing your journey. We all seek a positive outcome and this is so good to hear, especially at this time of year!

    Merry Christmas and a healthy, restorative 2014!

    Val

    • Hi Kimberly,
      My arm is doing much better, considering I’ve had heavy lymphedema for now 5 years. Besides the initial reduction in swelling, it hasn’t much changed within the last weeks. But I’m giving my arm much more time to get the new transplanted nodes to grow into their new roles. I do have really bad scarring, so some of the non-change has to do with the tissue around the surgery sites. This is actually the point I’d love to be able to see Dr. Chang, but due to the distance, it’s not easy. In the beginning, I thought it is a collection of surgery fluids (seroma), so I asked my original breast surgeon who did my lumpectomy to check on it. Fortunately, it wasn’t fluids, it’s just tissue.

      For sure, the arm stays soft, which is an enormous help to me. All the years, I’ve been really scared of the moment I can’t manage it anymore. To me, it already matters a lot that if the only positive would be to just have set a STOP to my lymphedema, that would be already very good. This seems already true, but time will tell how it’s going. I’ll let you all know.
      Lisa

  2. Lisa – I am currently in a battle with my insurance company to cover this procedure. They are saying it is “experimental” and refusing to even cover the testing. As I am also in Washington state, I would love to know what insurance you have so that I have more of a case in my favor. Thank you for helping pave the way for the rest of us!

    • This is Helen here and I will pass this on to Lisa… There are insurance companies covering this procedure.. It always seems to be a fight but more people seem to be successful.. I would hardly call it experimental any more!! I will see what insurance companies some others have … Helen

    • His heir I have just sent you an email with details of coverage that others have had and their insurance name .. Hope this helps.. I live in Australia so have no idea about this system !! Good luck

  3. Any word on how Lisa is doing? Also, is it poss to get the email about insurance overage? I’m fighting w my insurance at the moment. Thanks!

    • Sorry no follow up at this stage …. I have sent you an email with the insurance details i have collected.. Good luck… Who ever your doctor is may have someone you can speak to who has had the surgery and is able to give a follow up on their progress…

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