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  • #20934
    Jillly
    Participant

    That’s the kind of day it has been. We got good news from our insurance company: they will now be paying for the BRAF test that they had previously denied. The bad news came in the pathology report from Vern’s surgery: there was melanoma found in six of 15 lymph nodes from the right inguinal area and “microscopic extra-nodal extension is identified.” Also, in the right internal ileac “rare melanoma tumor cells involving fibroadispose tissue in a background of numerous histiocytes.” Not sure what that means. I am sure it’s nothing good, but if someone could translate I would appreciate it. We have been without water since Saturday morning as there have been three water main breaks in town. So more good news/bad news when we got home today: the good news is that they restored water to all but three houses in town. Yep, that’s right….we are one of the three houses. No water until tomorrow afternoon….maybe.

    Jillly

    #58550
    abdorma
    Participant

    Okay Jilly, it is time for the gods of good fortune to smile on you and Vern!!!

    Your last week could seriously be a Lifetime Movie starting with the surgery that went on into the middle of the night, driving through bad weather to get home, a blizzard, and losing water for three days. I am hoping that your water is restored on Tuesday!!! That is the kind of stuff that can take you down when you are already dealing with health troubles.

    So I am no doctor, but I unfortunately do know what “extra-nodal extension is identified” means. Extra is the Latin for “out of” and in this case it means the melanoma microscopically extended “out of” the lymph node and it is not news you’d like to hear. The oncologist can tell you more, but it means that Vern is at a higher risk for recurrence of melanoma because those little devil melanoma cells made it out of the lymph node into the lymph system. I googled “fibroadispose tissue” and it means “loose and/or dense connective tissue intermixed with fat. Just what you would expect in the subcutaneous tissue.” (written by some doctor). I leave it to Catherine to explain why melanoma tumor cells are rare there.

    I am sorry that was the news you got but remember that there are many people out there who are living with Stage IV melanoma due to great advances in treatment in the last 18 months.

    When Vern is recovered from this surgery, no doubt the oncologist will offer you guys some options for treatment. If you have time, (after shoveling, carrying water from the hot tub and changing bandages ;) ), listen to a few of the webinars on this site for treatment options. We have found it helps to listen to them before we get to the oncologist so we know what the heck they might be talking about.

    And for what it’s worth, my husband had 10 “things” taken off him last Wednesday (nothing life threatening) but he has two incisions with sutures (including 20 stitches in his lip which has been pretty miserable for him) and eight other weepy wounds. Florence Nightengale me :? (NOT!!!) took 90 minutes to change the dressings on them the first two days. He has pretty much been housebound (not that he cared over Football Playoff weekend) and he is a little cranky. I have been reading him about you and Vern and we immediately have quit feeling sorry for ourselves and had an attitude adjustment as we know this is NOTHING compared to what you guys are going through. So you guys hang in there!

    Ann

    #58551
    DadZGirl
    Participant

    Jilly,

    Hang in there it has to get better! Only one way to go and that is up!

    I thought about you just now when I did the few breakfast dishes.

    We take so much for granted until we don’t have it.

    Here’s hoping the water gets turned on for you any minute!

    And that Vern continues to heal quickly and completely!!!

    Laura

    #58552
    Jillly
    Participant

    Thanks for the words of encouragement…these last few weeks have not been the greatest. As of this morning we are still without water – we are hoping that it will be back on tonight. The city of Oslo has been under a “boil” order, meaning that any water used for drinking or cooking must be boiled first. The Department of Health should have the results back this afternoon whether it is safe now or not. We have been staying in Grand Forks in a hotel which has the luxury of running water and working toilets!

    We go back to Mayo next week for appointments – we will find out what we are looking at in terms of treatment. Vern has bee doing pretty well this week; we did have some concern about the incision in his groin and had one of our local providers check it out. No infection, so that’s good. He is still taking pain meds but less and less each day.

    I hope your husband is recovering from all his “things” that were removed. How uncomfortable that must have been!

    Jillly

    #58553
    Catherine Poole
    Keymaster

    Jilly,

    Sorry to hear about your situation. Whenever we lose electricity here we lose our water so I can sympathize! Happy you found some comfort in the hotel and that things are improving. Keep in touch and let us know how you are doing.

    #58554
    abdorma
    Participant

    Hi Jilly,

    Been thinking about you and Vern the last several days particularly during the weather report and listening to the below zero temps and windchill readings in your part of the world. I most sincerely hope you have running water again and your trip to Mayo went (or goes) without incident. Weather like this just makes it harder to do everyday living and you both have enough going on without any additional stress. You two must be of hardy stock!!!

    My husband is scheduled for bloodwork, PET scan and oncologist visit on Friday am so we are trying to be ready for possible outcomes. Need to bone up on a few webinars tomorrow so we can pretend to be smart if we need to be moving to something else. We are thinking of asking about going off Zelboraf and on to IPI if his tumor load remains nothing or low and save the Zelboraf for later if we can. It is definitely nice to have options and a short time ago, there were very few!

    Keep us posted on how things are going. You remain in my thoughts and prayers.

    Ann

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