I just read in your previous post, and I must say fear of 'new' symptoms from treatment would cause me to stop. I've always thought I'd avoid chemo, but that's very hypothetical.

I'm not in a similar situation, but I do wish you and your family the best. Another 2 decent years sounds good to me.

I was over to see her, yesterday. She is pretty much paralyzed, now. I suspect the chemo did more damage to her system than the cancer would have. It's convinced me that should I ever have to face that diagnosis, I'd just get my card and made the best of the time I had left.

I've decided that when I am with her, I'm just going to carry on conversations like I always have - update her on work place gossip, family news, and just plain chat. She really seemed to brighten up when I did that, yesterday, and I think her speech even became clearer.

Her kids have come to terms with what's happening, faster and better than I have. Her husband is now, finally, facing the reality that he's soon going to lose his wife of 34 years.

Last edited Tue Dec 16, 2014, 07:27 AM - Edit history (1)

inside but trying to be as supportive as I possibly can for my wife. We don't talk about the end day possibles but are

hoping for a longer span of time cause we have a lot we want to do.

The cancer caused us to get serious about pre planning our final arrangements but it's really interfering with this holiday

season.

if only I could take my own advice! I'm a mess at times

We do not talk about the end days either just yet, just trying to stay positive. Hoping your second opinion at Moffitt yields some clarity, hang in there!

do we still hope for the future or not? We're still in the 'there is some hope mode' even though it is diminishing, hard to write that as I've only written it now for the first time.

A friend was recently diagnosed with ALS and the chances of a longer term survival are not good, he is in his early 50's and they have planned a 'trip of a lifetime' to Australia and New Zealand.

As much as I've resisted some drugs to help me cope, I will ask my doc tomorrow for 'something' and sleeping pills as well. A friend gave me a bottle of vodka last night to bring to NYC for the next four months, that is the timeframe we are looking at ... not saying it will last four months!

Hopefully your wife and son/children have someone they can lean on besides you, we are all in a tenuous position. The social worker at the hospital the other day was extremely helpful and she said she will follow us through discharge. See if there are support groups or at least a relative or close friend where your wife can turn in a time of crisis. I always have my great sister who will not let me fall too far.

I think I've said this before, it only takes one strong person to enlist an army, zero in on that strong person and let them help ... or in actuality they will find you and your family.

I think the clinging on to there is some hope mode is a good way of describing what the care givers go through.

I can not imagine, in my wildest dreams, what the person with cancer is thinking while facing this. As I've said to others,

"No matter what, it's not like a broken arm that gets set or a cut that gets stitched and then everyone walks out of the doctors office

to just wait for healing." It's an ongoing,constant feeling in the heart that things can change in a moment, usually for the worse.

It's hard to face that each day.

I'll give some background to this. My wife was diagnosed in August 14. September gave us a stent that went septic and 7 days in hospital, October gave us a liver embulisation three days in hospital, November gave us 5 regimins of chemo,4.5 hours at a shot, December is right here and you know where we're at at this point in time. We wait, right now, we wait and hope for tomorrow to bring good news but we've all watched the good news fade to black and hope for us it turns out different. (I can't believe i just wrote all that and I'm not going to delete it)

I'm not taking any sleep helpers or anxiety calmers either, but who knows what will happen in two day or three.

You all in this little section of forum are my strongman. Thanks.

As the person with cancer, I can share a bit about what it feels like. I am thankfully, currently in remission. Diagnosed with an aggressive and rare T Cell lymphoma in Jan., I did 6 months of chemo (3 days in a row, every 21 days). I tried hard to keep cheerful and hopeful - fortunately the chemo was only lousy in the beginning and the last 2 treatments. I kept busy, walked almost daily (except on chemo days), cherished every moment with friends and family (and my angel caregivers who never let me go to chemo alone) and did my best not to ever let go of the hope that I'd be cured. Some days were easier then others frankly. Some days, I was sad and scared. And lonely too (even with my amazing support system of friends and family)

The chemo put me into remission so my oncologist had me consult with 2 T cell specialists to discuss next steps- one at Memorial Sloan Kettering NYC and one here (Miami), director of the Transplant team at UM Sylvester Cancer Center. Both suggested a stem cell transplant using my own stem cells), fortunately the cancer was not in my bone marrow. Both advised that this could extend my chance of a cure by about 40%- the reality is that statistics on my type of NH Lymphoma are not great.

STC scheduled for late August. The day before admission, my doctor called to report that my cancer was back but we were still moving forward. I remember my hands shaking as i listened to his words- but he assured me that the amount of chemo needed for the transplant would destroy those nodules that had lit up the pet scan. I was on some level, scared shitless but took a deep breath and reminded myself that this was the way to a cure. Period. Was in the transplant unit at Sylvester for 23 days-most were not horrible, some however, were pretty bad. But I got through it somehow. Journaling at caringbridge.org helped a lot (can send you the link if you are interested). As did my amazing friends and sisters who came down from NY and Boston while I was there.

Recovery was not easy. I ran fever on and off (mostly on, low grade) for most of the first 3 months and was miserable and depressed. Felt like I'd never be well again- worried the transplant had not worked. After so many weeks with fever and a million blood tests for infection (at least 100- they tested for everything they could think of), my doctor that relapse was the only answer. After 2 weeks of utter panic, they decided to schedule a pet-scan. I assumed by then, I'd be dead by the end of the year (or would need another transplant which physically and emotionally were too big for me to wrap my arms around at the time). Told one friend that I was sad to be missing Hillary's inauguration. Spent most of the time on my couch watching tv or napping, not eating, completely defeated. Plus, the fever was making me week. But the pet-scan, much to everyone's surprise, and the bone marrow biopsy (don't get me started on those horrible things), were both CLEAR. Whew.

Today, 4 months post transplant I'm feeling pretty well. More like myself, walking most days and starting to actually allow myself to think and about having a future and about my next chapter (am on disability- not ready to work yet). My hair is growing back slowly, I'm meditating, taking yoga (gentle restorative) and even drinking wine on occasion. I have some annoying/painful arthritis from the chemo and insomnia (on some inner level there's still stuff churning around) but overall, doing great.

However, running constantly in the background like a program running on a PC, is this message reminding me that this may not be real or may be temporary. The shadow of relapse is always there and I often have to fight to push it out of view. If I give it too much attention, fear sets in and I become frightened of planning for the future or thinking about getting a new job ("who would want to hire a high risk employee anyway?&quot . Trying to plan a vacation for January but nervous about a commitment that short term. Next pet-scan is in March- doing my best to cherish every moment in the meantime including every sunset and every hug. Living life between pet-scans is a common challenge of cancer patients. It never goes away I've been told.

Here's a wonderful piece I came upon a month or so ago which really hit home for me- may be of help for you to better understand what it's like to have cancer. http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

Sorry to be so long winded- guess I got carried away.

Please remember that are not alone-- breathe deeply (download calm.com on your phone or computer- it's great for "checking out" once in a while- you'll see) and most importantly- remember to take care of you too (and consider Xanax- it's a dream drug- or pot) and keep us posted on how things are going.

Excellent post.

and it is a strong element in recovery IMHO.

This is a wonderful article and thanks for posting the link

We'll always be looking over our shoulder, yet need to remain optimistic for the future and enjoy each day as much as we can.

or you could say two sides of the same coin. One person deals with their own mortality, the other person, a spouse or close relative, is dealing with the mortality of their loved one.

We are all at different stages as we move along, the first time we board the ride we are most hopeful, but each time we board we face another challenge and the hills and valleys are more dramatic and uncertain. It is almost as if the ride is becoming old, as our bodies do, and we are less sure of the ride taking a wrong turn. As you mention that wrong turn can happen at any time, we just never know.

They've added some meds for my husband's second transplant, more concern about what the chemo will do to various organs, but we are still on the ride and can only hope to beat the odds.

Hang in there!