Taking some control and scheduling in hospice

Noni

I know it doesn't really need to be said since everyone's experience is different, but I ask that you kindly respect my decision. I hope this doesn't turn into a heated discussion.

I met with my MO on Monday and told him I've had enough. Every treatment I've been on has been harder than the last and I've seen nothing but mild to moderate progression. My MO has gently persuaded me for months to keep trying something new and I trusted him completely, but I have hit the wall and feel I have to say enough.

I was on Doxil for 3 months and due to a severe allergic reaction it was the worst time of my life. Yes, it did work quite a bit but there was still progression. Some of the smaller tumors shrank but the larger ones continued to grow, including the ones in my spine which is pretty significant. The spot on my liver which was only recently a minor 2 mm annoyance that we were keeping an eye on, is now over 3 cm. Boo.

I switched from Doxil to Doxorubicin on March 1st, hoping that the severe reaction was simply to the lipids in Doxil which prevent hair loss and cardiovascular damage. Sadly that wasn't the case. I continued to experience the debilitating all over body rash, pretty severe cognitive issues, fatigue and almost immediately the hair loss.

I have spent the past 3+ months bedridden and in severe pain. This is not the life I want for myself or my husband and child. My DH and I talked in great detail and very realistically about what the future holds and how that compares to my (our) wishes.

So, we laid it out with the MO this week. I will have one more infusion of Doxorubicin at the end of March. Hopefully that will kill off enough cancer cells to hold them back for a couple of months. My DH, DD, and I have a cruise at the end of May for my 50th birthday. In early June my DD gets out of school and with God's mercy I will pass over the summer giving DD and DH time to spend together, grieve and heal before school begins.

I pray that the s/e and allergic reaction from the Doxorubicin will lesson in the two months before the cruise starts so my body can feel relatively normal for our trip. I have continued to say and believe that the chemotherapy has always been much harder and painful than the cancer itself. It doesn't make sense for me to continue to try option after option, essentially stealing all quality of life. And I am grateful that my MO is backing me up on this.

March 29 - last chemo

March 30 to May 20 - clear the toxins and heal the body

May 20 to May 30 - vacation with family (praying for s/e free)

June 14 - last day of school, begin hospice

Summer 2017 - pass away peacefully

Yes, it may all be a pipe dream, but I am hoping for as close as possible. My MO said without any treatment I'd only have a few months. I'm hoping that's true.

My life and my family's life is too busy and involved for me to be bedridden and unable to participate. That's been hard everyone.

Please keep us in your prayers.

JJ

dtad

Noni...I'm so sorry but completely understand. I'm not stage 4 but have a lot of experience with end stage cancer as a Hospice nurse. IMO you are very brave. No one can tell you how long you will live without treatment. Hopefully you will have peaceful, quality of time with your loved ones. My only advice is to contact Hospice ASAP. Its been my experience that people wait to long to involve them. They can offer invaluable support o both you and your family. Good luck to you. W are all here for you.

Kandy

My prayers are with you and your family. What a hard decision to have to make although I know we will all be in your shoes at some point. I believe that you are the only one that knows when it is time to stop treatment and that decision is solely yours. I hope your plan goes just like you hope for it too.

Freya244117

I hope your side effects disappear and you get to enjoy your holiday and time with your family. Quality of life is paramount, knowing when to stop treatment must be the hardest decision though. I hope I know when the time is right.

I wish you all the best, hugs.

50sgirl

Noni, I am sorry that you have had such a difficult time. I completely understand your decision to stop the treatments. Only you have the right to make that decision because only you know how you have been affected by those treatments. We will all reach that point where the benefits of treatment are outweighed by the damage and pain that they cause. It takes courage to face things head-on as you have done. I hope that things follow your planned timeline and that you feel good during your trip. May your days be filled with love, joy a sense of peace for you and your family.

Hugs from, Lynne

stagefree

Noni,

What a brilliant idea and decision of your life, cos it's yours. Only long-termers can get you.. after a while the treatment becomes chronic for the loved-ones, yet we experience the nasty SEs, everyone sort of gets used to the idea of death.. I experience it with my 12 year old son, who was just 6 at dx. I am confident nowadays, he has grown to deal with life if I die today. You do somehow feel that.

In your case the progression of the disease and the treatment SEs unfortunately got you to this decision. Interestingly, I have heard of more than just a couple of patients outliving their doc's expectations. Snd with normal qol even feeling better. So, one step at a time sis, get ready for that awesome cruise!

Huge hugs

Ebru

zarovka

JJ - you are one brave and smart woman. do it however you want to do it. i think we've all come a long way in excepting that death is part of life. have an awesome cruise.

>Z<

Fitztwins

Actually I admire you. I hope to do the same when I have 'had enough". I love to cruise and I hope you have the best vacation full of laughter and joy. Many of us get how you are feeling.

I knew a woman on these boards a few years ago that went on a break and had 3 wonderful months...before the cancer took it toll.

Onward! I hope you recover quickly from the chemo side effects and enjoy many wonderful days/weeks/months.

susan_02143

Noni, no arguments from me. I firmly believe that all the choices that we make for ourselves are, by definition, the right ones. I wish you all the best in following your plans, enjoying a gorgeous summer filled with the people that you love.

*susan*

pajim

JJ, your decision is yours to make. I respect it totally. And I admire you greatly for it. I hope that I will have the ability and courage to make the same decision when the time is right.

The most awesome thing about your choice on how to live your life is that your family agrees with you. So lovely that you are all on the same page.

I wish you the very best of your Spring and your vacation. We're still here to support you in whatever way you wish.

Lotsa hugs,

Pam

LindaE54

Noni - all of the above. I'm glad your family supports you in your decision. You're wise and brave and I hope to walk in your footsteps when my time comes. Enjoy that cruise with your loved ones. Keep us posted. Bigs hugs to you!

Noni

Thanks so much for the supportive words. I've heard from friends and fellow cancer patients who saw my decision as giving up. I don't agree obviously, but I can see where they are coming from.

Yesterday I contacted my benefits people at work and started the process to cash out one of my life insurance policies. We are going to use that money to purchase the new house for DH and DD. Our current home needs a lot of work that we were doing until cancer took over. My DH admitted recently that he's overwhelmed with the thought of moving (along with everything else), and doesn't know where to start. I figured the three of us as a family can have fun picking the new place and it will make the transition easier for them.

So, house hunting is also on my calendar for the next few months. We will have friends, family, or movers to help with the heavy lifting so the timing is good.

Trying to keep nothing but happy thoughts!

blainejennifer

Noni -

I disagree with your friends who say you are giving up. You are planning! You want what is best for you and your family.

I'm with you completely in that I don't want my guys to suffer as I completely disintegrate in front of them. When that time comes, I will manage a graceful exit as well.

Your timeline sounds well managed and thoughtful. Do you want to be in the new house for your last act, or have it all ready to go, but have the old house be the one with the "bad" memories, and the new house be the fresh start? I ask, because I have often thought of setting the same thing up for my family.

Is there a value in them thinking, "Oh, this is the bathroom where I had to help Mom off the toilet.", to help them repair, or is it better to leave those recollections behind in the old place. What do you think? You sound like a much better planner than I am.

Mominator

Hello JJ,

I am sending you so much support for you and your choices. This is such a difficult decision, but it was made by carefully weighing the pros and cons of treatment, and its affect on your quality of life and your family.

The people who may feel you are giving up do not understand all that has gone into your decision. They are the ones who see the rosy visions of cancer patients on TV shows, who look and feel rather good, until they quietly say their good-byes and pass away in their sleep.

Many best wishes for your cruise. I hope you are feeling better by May and have a wonderful cruise. Also, sending good luck for the house hunting. I really don't think it matters when you move into the house. The important part is that you pick it out as a family.

My only suggestion is that you consider palliative pain relief and/or hospice before June 14. You can find out what's available, and pick and choose the services you want, and when you want to start them. I've seen people wait before calling hospice, and they always wished that they had started hospice sooner. My friend Lori really would have benefited from hospice much sooner, but husband was reluctant to "give up" as he called it. Her children were 15, 13, 13, 13 (triplets), 12, and 10 when she passed.

HUGS, Madelyn

Mominator

Hello JJ/Noni,

I hope you are feeling better (as the toxins clear out) and you are preparing for your vacation by now.

Keeping you in my thoughts and prayers.

love, Madelyn

Moderators

This is a sensitive subject but an important one.

Here's some help on some of the issues that come up when considering hospice care: Locating a Hospice programme, Questions to ask when choosing a hospice.

Read more in the link below:

Hospice Care

Sending much love and hugs

Noni

Thanks for checking in Mominator. I leave for my big trip in a week. I've had a tricky month with health issues but the farther out from chemo I am the better I feel.

My main complaints/issues are fatigue and weakness. Those stem from lack of appetite and not being able to keep much down. I'm at a dangerous weight but I have super steroids in hand to try to beef me up. I talked to my MO about marinol but that generally mellows people out and i need something to perk me up!

I'm breathing well and my entire body is rash free. Those are two big positives. I'll be bringing a wheelchair with me on the ship but the oxygen is staying home. My pain is manageable so there's no reason I shouldn't have a fabulous trip. Will report back.

Mominator

Noni/JJ: thinking of you, and keeping you in my prayers.

I hope you had a wonderful trip, with wonderful memories for DH and DD. You can give us an update if you feel up to it.

I hope that you are feeling comfortable and well-loved.

I hope that hospice is treating you well, and that you are at peace.

Love,

Madelyn / Mominator

Noni

Thank you so much for checking in. Hospice is going well, if you can imagine such a thing. I feel physically better than I have since being diagnosed. I have terrible bone pain when I don't take pain medication, but that's under control.

The hospice team has been great and supports my wishes. I've met with nurses, physical therapists, a chaplain, a physician's assistant, and a psych nurse and they've all been so helpful. The chaplain has been the biggest surprise. We've had several good chats and they've led to amazing peace.

I get out of the house once or twice a week, but really don't have the strength for much more than that. I am fortunate to have visits from family and friends to keep me sane. My brother moved in to help and my husband is home on family leave. We laugh because many days we wake up and none of us what the date, or even day of the week. It's kind of a nice feeling!

Mominator

Noni, thinking of you. I'm hoping that hospice continues to be as nice as possible.

Wishing you peaceful days and restful nights, and many warm memories that will sustain your husband, daughter, and brother.

Love,

Madelyn / Mominator 

Iwillwinthisbattle

Thinking of you and hoping that you and your family are at peace

Noni

Thanks ladies. Still hanging in with hospice. Three months and counting. There are good days and bad. Still happy with my decision.

bigbhome

Noni - I am so happy this is going well for you! Your sense of peace about your decision just oozes out of your posts and always gives me a sense of peace! You're in my thoughts and prayers!

Claudia

Mominator

Noni, thinking of you. Sending peace and love to you and your family. 

wam

NONI! How are you doing? Is your brother still helping you. I pray for your happiness everyday! I hope you will have to sign up 3 times for hospice.. We are all holding you tight. You have been a great help to me.

Mominator

Noni, thinking of you. Sending love and peace. 

Hoping you and your husband, daughter, and brother are surrounded in love and peace.

Love,

Madelyn / Mominator