Preparing for the procedure

My melanoma journey began on December 5th, 2007 with a mole removal on my lower right leg. You can read about that, including my intensive interferon experience, here http://intensiveinterferon.blogspot.com/. This new site is my blog to capture my personal experience with isolated limb perfusion to treat my in transit metastases.

The date for the isolated limb perfusion (ILP) at the University of Pennsylvania (http://www.uphs.upenn.edu/surgery/Clinical/EOS/isolated_limb_perfusion.html) is quickly approaching. I’ve been making and freezing meals, stocking up on pantry items, cleaning, ordering Christmas gifts online, and trying to get caught up at work so my life feels as though as much is in order as it can be prior to the surgery on Thursday, November 15th. I won’t know the surgery’s scheduled time until I receive a phone call between 3 and 6pm on Wednesday. I won’t be able to have anything by mouth after midnight on Wednesday, and we’ll have to make the two-hour drive to the hospital Thursday morning. Hopefully, we won’t have to deal with rush hour morning traffic – that could add another hour or more to our travel time, and make it more stressful.

I know that I’ll be in the hospital for 4-5 days, and that I should expect a 6-week recuperation. I’ve made arrangements with my job to be able to work from home as needed in December. My husband has arranged to be home with me the first two weeks.

Things I don’t know include having no idea how I’ll feel my first week home. How mobile will I be? Will I want a quiet house so I can rest, or will I be looking forward to visitors? (It will be Thanksgiving week, after all.) Will I be able to concentrate enough to read and write? What will wound care be like – will I be able to do it myself, or will I need assistance? How will my leg’s skin react to the chemo (how much burning and blistering)? How severe will the lymphedema be? How difficult will it be to get a compression stocking on my leg, and how soon will I need to start that (should I bring one to the hospital)? My next appointment with my oncologist in Hershey is five weeks after the operation, so how often will we need to travel to U Penn to followup after surgery? How comfortable will I be traveling two hours home from the hospital and making round trips afterward?

Really, that’s a lot of questions. I’m not even sure what to pack for the hospital visit since I don’t know if I’ll want clothing touching my leg. I also don’t know whether I’ll feel like reading, so do I pack simple magazines or a couple of books? We were given a hospital brochure for day surgeries, but not all of the information applies since I’ll be there for several days. I’ll know all, or at least most, of the answers soon enough, but it is a bit exasperating to have so many unknowns this close to the surgery.

I appreciate all of the support I’m receiving from family and friends. I know that all I have to do is ask, and I’ll have whatever I need. That is a comfort!

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8 thoughts on “Preparing for the procedure

  1. Carol,
    You are a strong and good woman…Together with your loving husband and family and the good doctors and nurses at U Penn, you’ll fight this thing back into submission! Know the prayers of friends and colleagues are with you! Peace and strength!!!!!!!!

  2. Pingback: Sending Love to Mom-Mom | McBlog 2.0

  3. I hope you’re recovering well as I type this, and I hope your questions got answered! So many unknowns… I can’t imagine how you could get anything done (or sleep! lol) You’ve been everpresent in our thoughts down here and we’re anxious to hear how things are going.

  4. Carol,
    I have been thinking of you and wondering how things went on Thursday. Will look forward to your blog and hearing about all of the miraculous healing that you will be doing! And what a gift you are providing for others who may have to undergo this same technique…….they will be able to refer to your blog and have a better understanding of the procedure and what to expect. Get lots of rest and be a good patient!! Thoughts and prayers are with you!!

  5. Hi Carol – just checking in to see how you are doing……I don’t see any updates so maybe I am not navigating your blog correctly?? Have been thinking of you and praying that your recovery is going smoothly.

  6. Would love to chat.. I had an isolated limb perfusion (ILP) in April of 2011at CPMC in San Francisco
    PLEASE lets connect as I too had found no one who shared this procedure
    I can tell you now MOVE YOUR LEG AS SOON as possible bend bend bend ..
    Hope all is going well
    Janet

    • Janet, I would love to chat with you as well. I’d love to understand how to balance the amount of leg movement with the amount of swelling. I was more active yesterday, and feel like I’m paying for it today by increased leg swelling (and the discomfort that comes with it).

      • Carol, you are between a rock and a hard spot.. movement increases the lymphatic system to increase flow … yes a balance is necessary … I’m 20 months out and still have to balance movement however as you know everyone of us reacts differently .. My knee froze up and continues to be frozen from lack of motion.. the swelling was so severe that i could not bend my leg .. now mind you my surgery was in April and I went into the summer (with temps over 100 degrees) and used a pool along with PT constantly ..Doctors say maybe to much physical movement yet at same time telling me to do more physically.. Rock and a Hard spot… That is why I say move move move … Would really like to speak with you over the phone .. my email is jacksgrandmah@yahoo.com if you send me your phone # I will call you ..
        Janet

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