Advice

lindachris · June 2011

We're headed to meet with the medical oncologist who will put forth the treatment strategy which we're gauging will be more cisplatin/taxotere. This regimen was difficult for Linda to continue following four cycles (3 each) from September through December. But the chemotherapy did eliminate the tumor and her CA-125 dropped to 4. Now it is slightly elevated (34) and the CT scan showed about a 2 cm tumor in the same spot as before.

My question begins with a passalong comment: Linda is trying to live life openly and with gratitude for what has transpired thus far. The surprise of it coming back so quickly (6 months essentially) is tempered by the fact that she has been able to achieve relatively good health between chemos. Usually it has lasted 2 years, with the first six months being recovery and dealing with some pretty profound side effects. No need really to detail those. You know them mostly; fingernail and hair loss, excessive tearing (this last time...) and echo nausea, neuropathy (can't feel her feet, and so on...)

So she's really struggling with looking into the maw of chemo again. They're asking for 18 total weeks or 6 cycles. That's what the GO said. We went for an appointment Friday and they had a system error that failed to record her appointment so we have to go back.

We had a vacation of sorts planned in a cute little suite of cabins in an old restored barn in Door County. But Linda has stated, "I don't know. Now I just want to get going." Yet she dreads, really dreads what that means.

We're fortunate in many respects. The cancer has not spread around since it was first detected and treated throughout the abdomen. We did both venous and interperitoneal that first time around. It was really wildly tough on her. But she's a tough woman. Sometimes too tough for her own good (or stubborn anyways...ha) and I'm just trying to help her prepare without being patronizing, selfish or whatever.

If any of this keys you to an insight to share with her, it would be appreciated. Perhaps those of you with experience in all this might have something to offer her. I'll read it to her as I always do. She's just not one for sharing her feelings this way but she does not mind hearing what others experience and think.

Just trying to do our best. God Bless.

Chris

zenisthou · June 2011

Ask your surgical onconlogist about HIPEC
Hi, Chris,

Sorry to hear that Linda is in recurrence. I don't know Linda's previous history, but I assume this is her first recurrence? If she is in good health condition and the cancer did not spread out of the pelvic, she could be a candidate for HIPEC. I have scheduled to do this treatment in late July after I am back from Cruise with my kids. I have posted several topic about HIPEC for your reference, and you can google with HIPEC as key words for more reading. Let me know if you have more question and I will try my best to answer.

I wish all the best to Linda and your family.

Take care.

Tracy

LaundryQueen · June 2011

Making the "right decision"
Dear Chris & Linda

Whatever decision you make will be the right one. The way I see it, if Linda is really anxious about her situation, then that is the main obstacle Linda needs to overcome first.

Somewhere on this board, I posted info about a study that said the outcome was no different whether women were treated earlier (as soon as their CA-125 was 70) or had chemo delayed until they were symptomatic (an average of 4 months difference). The researchers did not tell the women who had their chemo delayed what their CA-125 was and those women had a better quality of life in the interim.

Since Linda already knows that she needs to get back on chemo, that info alone has affected her quality of life. In my opinion, there is an element of post-traumatic stress (PTSD) going on and I can't say enough about a treatment for PTSD called EMDR.

Linda Procopio posted info about some research that said if there was the possibility of needing surgery, then it was better NOT to wait until symptomatic. I am assuming that surgery is not an option for Linda. Since there is a measurable lesion that keeps showing up, WHY NOT surgery? That's what you gotta ask when you get to that appointment.

I know that if it was me, I'd take the vacation...and I would also stay off bread & green leafy veggies as well as sugar (I am convinced that all that stuff probably does feed cancer).

(((hugs to both of you)))

LQ

AussieMaddie · June 2011

Thinking of you ...
Hi

I wish that I could offer some words that could help you to feel better. My own experience of chemo (so far) has been very different. I don't know why some people must take the full brunt of its effects while others seem to get away scot free. I wonder if anyone has ever done a study to show why some people don't have the side effects, in which case they might be able to help those who do. I'm particularly glad that her cancer has not spread.

Just know that Linda is in my thoughts.

AussieMaddie

lindachris · June 2011

LaundryQueen said:
Making the "right decision"
Dear Chris & Linda

Whatever decision you make will be the right one. The way I see it, if Linda is really anxious about her situation, then that is the main obstacle Linda needs to overcome first.

Somewhere on this board, I posted info about a study that said the outcome was no different whether women were treated earlier (as soon as their CA-125 was 70) or had chemo delayed until they were symptomatic (an average of 4 months difference). The researchers did not tell the women who had their chemo delayed what their CA-125 was and those women had a better quality of life in the interim.

Since Linda already knows that she needs to get back on chemo, that info alone has affected her quality of life. In my opinion, there is an element of post-traumatic stress (PTSD) going on and I can't say enough about a treatment for PTSD called EMDR.

Linda Procopio posted info about some research that said if there was the possibility of needing surgery, then it was better NOT to wait until symptomatic. I am assuming that surgery is not an option for Linda. Since there is a measurable lesion that keeps showing up, WHY NOT surgery? That's what you gotta ask when you get to that appointment.

I know that if it was me, I'd take the vacation...and I would also stay off bread & green leafy veggies as well as sugar (I am convinced that all that stuff probably does feed cancer).

(((hugs to both of you)))

LQ

Good advice
Everyone here is so helpful. And your statement about quality of life is right on. I plan to share these posts with her tonight and get back on to share HER feelings.

Thanks.

Chris

mopar · June 2011

ADVICE
Well Chris, you both have a lot on your plate, again. But it sure does sound like Linda is tough, and she has a tough husband by her side, too. I say, take that little getaway. You can confirm with the doc, but I think in the grand scheme of things, this little 'delay' will be inconsequential. And it just might be what Linda needs to overcome any anxiety about this. We had planned a little getaway before I was diagnosed. And once I started chemo, we decided to follow through with our plans. I wasn't able to do everything I had hoped, but it was still 2 days well spent, and filled with love and now fond memories.

You are 'doing your best'. He will enable you to continue to do so.

Hugs and Prayers,
Monika

lindachris · June 2011

mopar said:
ADVICE
Well Chris, you both have a lot on your plate, again. But it sure does sound like Linda is tough, and she has a tough husband by her side, too. I say, take that little getaway. You can confirm with the doc, but I think in the grand scheme of things, this little 'delay' will be inconsequential. And it just might be what Linda needs to overcome any anxiety about this. We had planned a little getaway before I was diagnosed. And once I started chemo, we decided to follow through with our plans. I wasn't able to do everything I had hoped, but it was still 2 days well spent, and filled with love and now fond memories.

You are 'doing your best'. He will enable you to continue to do so.

Hugs and Prayers,
Monika

Our decision
Considering several of you said "go on vacation" it is a little hard to write this. As if I didn't listen! Well, that's not the case. But we did cancel our vacation. The woman at the B&B in Wisconsin was so understanding and is refunding our money, $300. On one hand it is disappointing because through all the economic and health challenges we haven't gone anywhere in a couple years and that's not exactly mentally healthy. But neither is going if it's going to feel forced. It's one thing to say "Let's go have some GD fun...." but quite another to say "Let's go because we should."

So I sat on the porch with her last night, admittedly feeling a little bitter about the situation. It's not the vacation but the fact that she responded so quickly that she didn't want to go when I asked her. I'd even looked up a week (next week actually) where there was availability. And it was the fact that my feelings weren't acknowledged that hurt the most. But many times that happens in relationships and marriage so you just have to move past it.

So constructively it hit me what to do with the vacation money. For YEARS we've had a light out in the shower in the little shower in our bedroom. Linda's been showering in the dark for years because I went to fix the bulb and it broke off in my hand and the little cap got all twisted in there and it needs replacing. We've fixed tons of things in our house but not that. Well, damn it, now's the time. And we'll connect the roof vent fan that's sat unconnected since it was installed four years ago and improve our lives that incremental way.

So if I can't get her on vacation at least she'll be able to see what she's doing in there. I've got a guy in my cycling club that's going to come over and do the work. I can't do electrical because I'll burn the house down. At least I know my limits.

As for vacation, I'll take mine in little bites by riding my bike at every opportunity. Sanity through pain.

leesag · June 2011

lindachris said:
Our decision
Considering several of you said "go on vacation" it is a little hard to write this. As if I didn't listen! Well, that's not the case. But we did cancel our vacation. The woman at the B&B in Wisconsin was so understanding and is refunding our money, $300. On one hand it is disappointing because through all the economic and health challenges we haven't gone anywhere in a couple years and that's not exactly mentally healthy. But neither is going if it's going to feel forced. It's one thing to say "Let's go have some GD fun...." but quite another to say "Let's go because we should."

So I sat on the porch with her last night, admittedly feeling a little bitter about the situation. It's not the vacation but the fact that she responded so quickly that she didn't want to go when I asked her. I'd even looked up a week (next week actually) where there was availability. And it was the fact that my feelings weren't acknowledged that hurt the most. But many times that happens in relationships and marriage so you just have to move past it.

So constructively it hit me what to do with the vacation money. For YEARS we've had a light out in the shower in the little shower in our bedroom. Linda's been showering in the dark for years because I went to fix the bulb and it broke off in my hand and the little cap got all twisted in there and it needs replacing. We've fixed tons of things in our house but not that. Well, damn it, now's the time. And we'll connect the roof vent fan that's sat unconnected since it was installed four years ago and improve our lives that incremental way.

So if I can't get her on vacation at least she'll be able to see what she's doing in there. I've got a guy in my cycling club that's going to come over and do the work. I can't do electrical because I'll burn the house down. At least I know my limits.

As for vacation, I'll take mine in little bites by riding my bike at every opportunity. Sanity through pain.

Hi Chris,
I actually can
Hi Chris,

I actually can relate quite a bit to both you and Linda. My husband planned a Florida vacation for this summer that we also cancelled because of my recurrence. I am heartsick for him, because it really would have been his dream vacation. Having said that, a vacation for me would have been very stressful because it would have meant postponing treatment.

As it turns out, our refrigerator died Sunday, so we ended up having to spend some of the vacation money for a brand new one, so I guess all things have a reason. My hubby also has a motorcycle that he'll be out and about in when things get more settled here. He belongs to a local riding club.

My prayers are with you and Linda, spend some of that vacation money on something fun. We plan on a crab feast before my taste buds and appetite get too screwed up from radiation!

Hugs and prayers!

Leesa

lindachris · June 2011

leesag said:
Hi Chris,
I actually can
Hi Chris,

I actually can relate quite a bit to both you and Linda. My husband planned a Florida vacation for this summer that we also cancelled because of my recurrence. I am heartsick for him, because it really would have been his dream vacation. Having said that, a vacation for me would have been very stressful because it would have meant postponing treatment.

As it turns out, our refrigerator died Sunday, so we ended up having to spend some of the vacation money for a brand new one, so I guess all things have a reason. My hubby also has a motorcycle that he'll be out and about in when things get more settled here. He belongs to a local riding club.

My prayers are with you and Linda, spend some of that vacation money on something fun. We plan on a crab feast before my taste buds and appetite get too screwed up from radiation!

Hugs and prayers!

Leesa

Ours is threatening to give out too. Funny how that works.

After her appointment today we'll know more about what's to come. Then we can plan SOME fun.

Chris

AussieMaddie · June 2011

lindachris said:
Ours is threatening to give out too. Funny how that works.

After her appointment today we'll know more about what's to come. Then we can plan SOME fun.

Chris

Love it!
Chis, it's so very thoughtful, and practical under the circumstsnces to make your lives more comfortable at time.

More power to you!

AussieMaddie ((( hugs to you both )))

LaundryQueen · June 2011

AussieMaddie said:
Love it!
Chis, it's so very thoughtful, and practical under the circumstsnces to make your lives more comfortable at time.

More power to you!

AussieMaddie ((( hugs to you both )))

Chris: I must confess that
Chris: I must confess that dealing with the diagnosis of OVCA has made me the most self-centered that I have have EVER been in my life. I am sure I have been guilty of not taking my husbands feelings into consideration when I made my decisions at times. Just the way it is I guess.

(((hugs)))

LQ

lindaprocopio · June 2011

LaundryQueen said:
Chris: I must confess that
Chris: I must confess that dealing with the diagnosis of OVCA has made me the most self-centered that I have have EVER been in my life. I am sure I have been guilty of not taking my husbands feelings into consideration when I made my decisions at times. Just the way it is I guess.

(((hugs)))

LQ

I actually said to my dear husband "This can't be about you."
How horrible is that? Back in late 2008/early 2009 when I was "going for the cure" and letting them nearly kill me with adjuvent chemo and radiation in an all-out effort to irradicate the beast from my body once and for all, I felt that for once in my life everyone was going to have to put me first. My husband, always anxiety-ridden and a worrier even before my cancer diagnosis, was told by his adoring wife that "This simply can't be about you and how you feel; this has to be about me and my fight for survival." Please understand, at that time, that I looked on cancer as a 'finite' battle that I would wage and win in 6 months and then close the door on this chapter of my life forever and move on. I thought I was asking him to 'man up' for a 6 months,...not for the almost 3 years it's already been. And he really rose to the occasion, surprising even himself with his strength and caregiving skills. And now that it looks as if cancer is always going to be a part of our lives together, I have tried to be sensitive to what this is doing to him and to the sacrifices he's made over and over and over for me. Because this really is about BOTH of us; his life is as impacted by cancer as mine. And I do everythung I can to lead by example with acceptance, hope, and grace, and I think it's helped him.

I know you've made your vacation decision. But I will tell you that I had radioembolism June 1 to the right side of my liver, and ordinarily would have had the left side done in early July. But I've had a beach house rented for my whole family for the week of July 16th to 23rd, and my interventional radiologist and chemo onc BOTH encouraged me to wait until AFTER my vacation to have the 2nd surgery, so that there will be no risk that I will be feeling sick on my vacation. There's a calculated risk in delaying treatment 3 additional weeks (my CA125 was 8500 at last labs!), but there is a quality-of-life consideration since there's a pretty good chance that this is my last summer. HOPE NOT, as that seems surreal because I feel SO healthy and strong and symptom-free, and would never believe I had as extensive cancer mets as I do, if I hadn't seen the scans myself. You and Linda are not where we are in this journey; I totally understand your decision. But quality of life needs to be factored in once you know you're in this for the long haul. You gotta LIVE LARGE whenever you get the chance and have the strength. (((((hugs))))

Mwee · June 2011

vacations, fridges and hugs
Dear Linda, Chris and Leesa,

I can soooo relate to the "just doing our best". Vacations are great when you're up to them, but for me when I'm home as much as I am, I get huge pleasure out of something being fixed that has been entirely of out my ability to accomplish. Here's to fridges that work and hold the ice pops that sooth our throats after chemo!
(((HUGS))) Maria

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