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Trying to stay "UP" but not even close!


jaminkw

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I've been struggling since yesterday after my oncologist told me Avastin maintenance would continue every three weeks until the disease progressed or until the person got tired of it. I feel like I'm sinking fast over the realization that if I want to continue to live, my life will be defined by my cancer and cancer treatments every three weeks--possibly forever. For the first time I wonder how long do I want to live at that cost. It's not just me but my husband. He's the one who hauls me up and down a seven to eight hour trip to Orlando for treatments. Will I ever be able to do that myself and give him back some of his life? Even when I found out I had cancer, and then not cureable but manageable, I didn't expect the final edict to be like this.

Judy in Key West

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((((Judy)))))

Unfortunately, cancer does define a big part of our lives now. I am sure for even those who are in remission or NED, its never far from their minds. Its part of our "new normal".

I'm sure that it is terribly difficult to have to drive that far for each chemo but do you really think your husband cares??? If the situation was reversed, would you not be willing to travel as far as you needed to help him??? I went through that in the beginning, also, that I was "imposing" on my family, and like you, felt I was taking time away from them. But in time I realized that was just my emotions talking - our husbands and kids love us, they need us, they would do anything for us.

My heart breaks for you that you are feeling this way. I wish I could do more for you than to just say that this feeling will pass. Its just the emotions of being so overwhelmed right now and standing at the bottom of a huge mountain and looking at the uphill climb thats ahead. But somehow, you will get through this - and your husband will be alongside of you, grateful for the opportunity to help you.

Please PM me if want to talk - I will be there for you.

Hugs - Patti B.

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You should be able to get the infusion closer to your home. I am pretty sure the Avastin order can be filled anywhere and infused at a place closer to you. Any hospital should have an infusion center. You can still see your regular oncologist for appointments and follow up. Avastin is such a quick infusion that it makes no sense to travel so far just to turn around and come back.

Ask your oncologist about doing the infusion closer to home. I'm sure there is a way to work that out.

Good luck with Avastin-- it worked well for John.

Rochelle

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Hi Judy:

While I realize it must seem like an eternity since you've been on your cancer journey, the reality is that you're still in the process of just settling into the routine of treatment, scans, dr visits, etc.

You have chosen to go to a first rate cancer treatment facility and you're being seen by a first rate oncologist. I applaud your choice as I believe it was a good choice and that is where Maurice goes. In fact you and he have the same onc. They have resources that a lot of local facilities just don't have and the issue of insured/uninsured for treatment or drugs (even drugs on an out patient basis) is simply a non issue for them.

Right now I know it's hard to get your head around the fact that you will probably be in treatment for a very long time. This is what the good people on this board call the 'new normal' and they're right because that's exactly what it is, a new normal.

Patti asked you if the situation were reversed would you not do everything in your power to help your hubby? Of course you would. Your hubby, your friends and family stand willing to help and do anything they can to make this easier for you. Please do not let guilt cloud your judgement.

There is a very real possiblility that an anti depressant could be helpful at this time and I would urge you to discuss this with your PCP or your onc.

I wish you well, and send prayers that you will enjoy a good result with Avastin. The combination of Avastin and Tarceva, in a clinical trial, kept Maurice stable for 14 months.

Please feel free to pm me at anytime

wendyr

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Judy can you picture a 280 pound man riding a bicycle back and forth 3 miles from the cancer center to work in the cold so his wife had a vehicle if she needed it. Well I was that man for months. I know how you feel and I believe your Hubby would walk over burning coals for Ya, without saying a WORD!!!!!!!!!

Ok next question. IF you don't ask oncologist about a satellite transfusion for avastin You will never know the answer. It could be very simple to set up if you call and ask him.

I think there are 2 in Miami at furthest Probably 1 being Baptist Health South and these 2 are in the Keys I even gave YA the Phone Numbers!!! :wink::lol:

Key West Familyi Medical Center

1446 Kennedy Dr

305-294-8900

Lower Florida Keys Health System

5900 W. Junior College

305-294-5531

Make the call! Enjoy every day in Those BEAUTIFUL KEYS!!!!don't let the cancer run your life :( Run the Cancers Life until it dies!!!!!!!!!!!!! :twisted:

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Judy,

I will not begin to know what you are going through,

but I do know what it is like to care for someone with this dreaded disease.

My husband has been battling now for over 3 years, and we have fought the beast as a TEAM.

Recently Alan said he was sorry he was such a burden

on me. I told him if he ever said that to me a again

I would not be a very happy with him.

When I took those wedding vows I meant every word of

them. Better for worse, sickness and health. We don't

pick and choose what vows we want to live by, we live

by all of them.

Yes by the end of the week I am tired from working and taking care of Alan,

but at the same time I couldn't imagine being anywhere else in the world.

You have a fight on your hands, no one is going to argue that,

but you fight and you live.

Many prayers are headed your way.

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Oh Judy (((hug)))

I can't know what you're going thru fully, but I know what it's like to care for someone you love who has cancer- and Randy's right...you do it and you do it without hesitation because you love them so much.

That's what you're husband is doing.

I don't know if it's possible but you can try to take your treatments closer to home if you think that will lessen the load and only see your onc. who is 8 hours away during scan times?

I don't know. I just know that my heart breaks just reading your post.

You are trying hard to beat this cancer and worrying about others on top of it.

Take it a moment at a time. Concentrate on you and on getting thru treatment. Remember that your husband loves you no matter what and that we are all here for you too.

I'm hoping for better days ahead for you.

((hugs))

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It was good to get up in the morning to all your posts. I did talk to my oncologist about getting Avastin locally and she said the facility at home would have to reapply for a new approval. I have little confidence in our "third world" medicine in Key West. Our oncology center is a small clinic with different doctors coming in and out from Miami. The chance that I could wind up in the hospital there through some complication was the chincher for my PCP going in favor of MDACC.

I think for right now I need to keep trying to wrap my head around staying with MDACC and being open to change if necessary in the future. My husband keeps saying day by day. He's right.

Thanks all, Judy in Key West

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I got up at home this morning and read all your posts again--in addition to your new one Patti. They are so comforting. The internet where we stay in Orlando is not the best so I wrote and read quickly while I was there.

One thing it looks like I left out so that people could understand is the drug replacement program at MDACC. It's not portable. I already asked. That and my onc will keep me there as long as we can hack it. I would have to switch primary facilities and have them apply. It was a grueling process but well worth it when you are uninsured. I also had to stay three extra days this time to get replacement on my Neupogena. They say I probably won't have to do that on the Avastin maintenance. I've had a hard time in the past when I've had an extended time up there because you barely get home and it feels like you are leaving again. Bottom line, we'll start doing the three week routine Mar 11 varying it when we can. We should be up and back in three days and only have to see Dr Tseng every six weeks.

Ok guys, I'm ready to go again.

Judy in Key West

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Hi Judy,

I was hesitant in replying because I had no idea what to say to you. I can sense your anxiety and fear and have no words to take either away. I DO, however, understand the feeling you have when looking forward to travel every 3 weeks. I travel too......not every 3 weeks though. If I read correctly your stay is about 3 days each time?? So that's 3 days there and 18 home. That appears to be what your 'new' normal will be. If you do well on this protocol, try to look at it as a small price to pay. Hard, I know. But things will never be the same for us again. Am I sorry this is your reality? You bet I am.

I often say that if somebody told me this is the way things were going to eventually turn out for me, I would have said......that's not what I signed up for!!!!! But somebody signed us up, Judy, and we're still here. Since that's the case, we just gotta do what we gotta do to make it through. Difficult? Yep! Depressing? Yep. Maddening even? Yep. All of that. I'm waiting to see if I must board the train again myself. I haven't been handed the ticket yet, but the waiting is definitely creating more than anxious moments here.

I've said absolutley nothing to help you, Judy, just want you to know that I 'hear' you and understand just where you are. And for both of us ~ I'm sorry about it all. But we WILL go on.

Kasey

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Kasey: Funny how we never know what will help another person. Your words and tone are so empathic and often just having someone hear you is what you really need. Thanks for keeping my focus on the 3 days aways and for doing the math for me! I like the 3 vs 18. I was devastated as most of us are when we get dx'd, but I really thought it was going to be like so many hardships that have been thrown my way. I thought I would fight it and win. Looks like I have to redefine "win." And the fight could be a really long time since I've told my family for years that I planned to live to be 104--my feelings were if Rose Kennedy could do it so could I! Wonder what my odds are on that now?

Thanks and hope your journey comes later instead of sooner.

Judy in Key West

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  • 4 weeks later...

Dear Judy,

I am new here and was reading the postings.

When I saw yours, my heart just sank. Your telling of your feelings made me want to give you a big hug, and tell you that my husband has been over to the cancer center - it seems - for eons. We are chasing the cancer.

He has asked me if I would like to stay home and relax. What? I told him, "NO." This journey is for both of us. Our trip, of course, doesn't match yours in any way. We go over there in Hackensack (a 15 minute trip) and we share the infusion time. It's part of the deal.

So far, the infusion times (Avastin/taxol/carbo) have been for four-five hours. He receives one of them very, very slowly.

Please know that what everyone has told you is true. How would I feel if I were the LC survivor, and needed the support/comfort of Bill to keep me afloat emotionally?

Know that being with someone you love is all part and parcel of being close.

I need that as much as he does. It brings me comfort.

Barbara

"jaminkw"]I've been struggling since yesterday after my oncologist told me Avastin maintenance would continue every three weeks until the disease progressed or until the person got tired of it. I feel like I'm sinking fast over the realization that if I want to continue to live, my life will be defined by my cancer and cancer treatments every three weeks--possibly forever. For the first time I wonder how long do I want to live at that cost. It's not just me but my husband. He's the one who hauls me up and down a seven to eight hour trip to Orlando for treatments. Will I ever be able to do that myself and give him back some of his life? Even when I found out I had cancer, and then not cureable but manageable, I didn't expect the final edict to be like this.

Judy in Key West

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