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  • #21354
    Sandalwood36
    Participant

    Have been sitting here reading care giver posts for a couple of hours now. Taking a break from All of the requisite melanoma care giver research. Trying to garner some strength to continue supporting the love of my life during his horrific battle.

    Have tried very hard to stay positive since Bob’s stage IV diagnosis 7 months ago, but it’s getting so damn hard.

    Cancer is currently in his stomach, liver, spine and brain. Ippi, chemo and radiation haven’t worked.

    Missed starting pd1 trial by 1 week due to new brain mets.

    Just completed 14 WBR sessions combined with 10 spine radiation sessions.

    Amidst all of this (and weekly blood transfusions), he accidentally feel down a flight of stairs and suffered a compression fracture in T5.

    As if that wasn’t enough, they discovered pneumonia in us lung while xraying to assess fall damage.

    After 1.5 weeks back in MSKCC, his back was repaired with Kyphoplasty and the pneumonia was successfully treated with IV antibiotics, but then he developed severe edema/lymphodema.

    Released from hospital Wed. Night and struggling every minute since to keep him comfortable, nourished and hydrated (fail).

    Visiting nurse was here today and is arranging for delivery of a hospital bed, commode, PT, OT, and HHA.

    This help can’t come a minute to soon…

    Large contingent of “Team Bob” members will be participating this Sun. In the ACS George Washington Bridge Challenge in NY.

    Huge Thanks to my amazing daughter for organizing our team, designing, purchasing and selling tee shirts, and coordinating every detail to make this Sun. A truly positive and memorable day.

    Huge Thanks to the rest of our amazing kids, family, friends and colleagues for all of their support and fund raising efforts.

    We are so proud to already have raised over $9,000 as a team.

    Hell… We’re not a team… We’re a force!

    Have to keep on fighting the good fight and supporting the real warriors as long and as hard as we can.

    Sorry Im rambling.

    Just random thoughts from an exhausted and frustrated mind.

    Finally, thank you to all MIF forum members for their enlightening and unfaultering support.

    Peace.

    #61193
    Sandalwood36
    Participant

    Just checked again on my awesome but quickly deteriorating husband and found him sleeping peacefully.

    Unfortunately his meds, drinks (water, flat ginger ale, and lactose free chocolate milk), and snack are all still sitting untouched on his tray table.

    How in god’s name can I get him to help himself, so that he at least has a chance to make it to a pd1 trial?

    #61194
    dkmc
    Participant

    You just try your best…..peaceful is good. I just have to believe that what will be will be. God bless…Team Bob rocks…much love, Karen

    #61195
    Catherine Poole
    Keymaster

    My heart goes out to you. I agree, you can’t ask for much more than being at peace. I do hope you will take good care of yourself, you are an awesome caregiver. I hope you will bring your team to our Safe from the Sun event next April, we would love to honor you and your family. Keep in touch and let us know how you are doing too

    #61196
    abdorma
    Participant

    Sandalwood,

    Your post brings tears to my eyes. So sorry for what you are going through. If any source of consolation, there is a little of that in my house too.

    Here is what you should also consider, difficult though it may be: if his brain mets are treated and stabilized, I think you have to have a rating of 0 or 1 in the Cancer Performance Rating index or whatever it is called to qualify. My husband just flunked because of that.

    Much as I hate that we are where we are, he is 90 percent sure he is not going to seek other treatment and enjoy whatever quality of life he has for as long as he can have it. The hospice folks were out yesterday.

    Peace is good. Being in pain sucks; Melanoma REALLY sucks. We have had a longer time in our house than you have had in yours to understand that sometimes getting well is all about timing. Brain mets that show up weeks or days before a clinical trial; 70 days after a tumor is removed, trials being open, etc. I learned that from Rachel and Jeff and others who have written on this forum and while it is not a lesson I wished to learn, I am grateful I understood it long before it was happening to us.

    I wish you sleep and peace too. This is so hard. Watching the person we love the most in the whole world slowly fail. I will keep you in my prayers!

    ann

    #61197
    Anonymous
    Guest

    Tears in my eyes too Sandalwood. I cannot add anything more heart felt than what the others have so wisely said.

    Be assurred, you’re not alone.

    What a great soul you are to give so much of yourself to Bob and he’s blessed to have you and the family.

    Keep up the hope and fight!

    I find the Psalms very comforting at times.

    With Prayer for you and Bob.

    Jeff

    #61198
    debbie449
    Participant

    I am so grateful to have read your post. Our fight began six months ago. Like you, we have tried several treatments…all without success. melanoma continues to progress. My husband has lost 40 lbs, not eating, sleeping most of the time. Mets in his spine, ribs, pleural tissue, lungs and liver. He is a candidate for the new BRAF/MEK drugs, but, he is absolutely wiped out. We are struggling with whether to enter hospice or not. It has been absolutely heartbreaking.

    Thanks for sharing your experience.

    Debbie

    #61199
    abdorma
    Participant

    Hi Debbie,

    You and your husband’s current physical situation is similar to ours: tumors in all the same places except my husband has no liver tumor but brain mets. He had a fabulous reesponse to Zelboraf that bought him five months but physically he was in good shape when he started.

    I would expect your husband might do well with BRAF-MEK combo if his physical condition is strong enough to handle the side effects. Have you asked your oncologists if he thinks he can handle it (probably a stupid question on my part)? When we were discussing chemo option with melanoma staff, we did ask point blank what the experience of others with his tumor load was. The answer to that question helped us decide about whether to go with chemo. You have a different treatment option with good results but if can’t survive the treatment…..

    Don’t mean to insert myself in your situaion but know how tough a decision this is.

    Best of luck to you both.

    Ann

    #61200
    debbie449
    Participant

    Since my last post, Frank received three units of blood to raise his hemoglobin. I am beginning to accept that he can’t travel to a trial. The tumor in his left hip is really painful now as well. He will be getting radiation on it tomorrow to try to relieve some pain. Our doc here has prescribed the new Glaxo BRAF medicine as well. Hopefully, we can catch a break. This has been one kick In the gut after another.

    We had to have a hospital bed put on the main floor. He can’t climb the steps anymore. This made both if us cry .

    #61201
    Sandalwood36
    Participant

    So sorry to hear about everyone’s struggles. So glad to have you all to talk to. I wish bob was BRAF pos but alas he is not. I pray that the recently approved BRAF drugs work for your loved ones.

    Sadly bob is continuing to deteriorate rapidly and his pain is increasing. He is bedridden in diapers, and can barely speak. He can’t eat,yet has constant diarrhea. Finally found something he likes to sip. Propel. It’s awesome. At least he’s staying a little hydrated.

    His insurance company, in its ultimate wisdom, denied hha coverage. Aren’t ready to bring in hospice yet. Still hoping he might get stronger and get into a pd1 trial.

    As if life isn’t hard enough, my 22 year old baby got arrested for driving under the influence this week. Good hearted (but foolish) kid that she is, she volunteered to stop drinking 3 hours into a 5 hour night out (3 drinks), after the “DD” decided that she wanted to drink. Tough and expensive lesson learned. Tough too for me to watch them bring my baby into the courthouse in handcuffs after spending 14 hours in jail.

    Just when I thought it couldn’t get any worse, bobs only aunt passed away unexpectedly this morning at 75.

    If someone’s testing us, they better knock it off, cause I personally can’t take much more…

    #61202
    debbie449
    Participant

    I am so sorry to hear about Bob. His story seems so similar to Frank’s. Frank is having a lot of difficulty walking now. The speed of the decline is staggering. Our internist has described it as a run away freight train.

    One of my continuing fears is that “they” will unlock melanoma one day too late for Frank. I realize this is irrational. It is just one of those thoughts. Another is “we just need time”. In our case, which sounds so similar to ours, we really want some quality of life to return. It’s so difficult to let go of who we were the day before we heard the words metastatic melanoma.

    I don’t want to watch the love of my life suffer this way. I didn’t realize he was going to be in so much pain. Hopefully, the radiation will bring some relief.

    #61203
    Sandalwood36
    Participant

    Hi Debbie. So sorry about franks decline. A run away train is unfortunately an excellent analogy.

    You fear is definitely not irrational in my book. We feel exactly the same way. Time is all we need, yet time is our worst enemy. And knowing that the pharm companies have truly promising drugs, but won’t allow our warriors into the trials SUCKS! How dare them play God with our loved ones lives.

    I wish you peace, love and strength.

    If you ever want to chat, feel free to message me on fb @ Linda Bahnken Robinson.

    #61204
    susansaw
    Participant

    One of the things I wish someone had told me before Don died is that he was actually dying before I realized it. No doctor, no nurse, no one had the courage to say to me “love him and be prepared to let him go.” We spent far too much time trying to get him well and not nearly enough time talking to each other about what we were going through.

    It is very hard to talk about dying when one is trying to be positive and uplifting. But it would have been good for me and perhaps good for him to be able to say “we need to talk”. From the time Don first went into the hospital for radiation on his spine for pain to the time he died in May of 2012 was only two weeks and four days. We didn’t even arrange for hospice until it was so late in the game that he was only there for four days and then he was gone.

    We had spent time prior to his becoming so ill talking in general terms about death and dying so I was aware that he didn’t want heroic measures taken or a funeral and that he wanted to be cremated. But this was all done long before we even knew he was sick and so it was “out there” somewhere in the future.

    Compounding our particular situation was that in Jan of 2012 he developed Bell’s palsy which didn’t go away and actually got worse and worse so that by the time he was really ill in April and May it was very, very difficult to understand his speech.

    So I would say to anyone who is holding out hope for a miracle, be prepared for that not to happen and do that talking while you can…..just in case.

    I still follow along with many of you, just don’t post much, but I have just passed my first year without my love and these are the thoughts I have at this moment.

    Susan Sawatzky

    Port Townsend, WA

    #61205
    Anonymous
    Guest

    Well said Susan!

    Rachel and & I were in the same boat as you & Don. We were so focused on patching her up to get her into a trial, we missed and ignored some of the changes in her health that, looking back, were clear indications her condition was degrading rapidly. Fortunately, her pain was minimal and she passed quickly.

    Unfortunately, this took away the oppertunity to say good bye to each other. I wished we would have done that.

    Susan, I’m glad to see you’re doing well.

    Warm Regards:

    Jeff

    #61206
    debbie449
    Participant

    I am happy to report that the radiation seems to have brought some relief. Frank also started the new Glaxo BRAF drug yesterday. Hopefully, we will gain a little time.

    I appreciate the feedback regarding the time remaining. I am grateful that we did talk about him not making it. We were able to cry together about our lost dreams and goals. We tried to hope for the best and plan for the worst.

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