Jump to content

Recommended Posts

My spouse was diagnosed almost exactly a month ago. Went in for ER visit believing it was a kidney stone causing pain in pelvic area. Through extensive tests and second opinions, it came back as stage 4 non small cell lung cancer (2.6 cm mass) with bone mets to the right pelvic bone (2.7 cm mass).

shes currently finishing round 1 of chemo- alimta and carboplatin. The next round will add avastin. Four rounds total followed by radiation. As hopeful as I try to be, she is very doom and gloom. The dr talked at the last visit of when she is remission, and I take that as a sign that the team of Drs wouldn't talk of remission if they didn't believe it was possible. Biopsy of pelvic bone done at ER visit came back as not being The mutation suitable for tarceva, and confirming adenocarcinoma. He talked that if after remission she would relapse the next step would be opdivo. 

At the initial appointment, she was told that without treatment she would have six months to live. 

I guess what I am seeking is advice from other spouses/caregivers on how to keep it all together everyday. And if anybody has any survivor stories that they are willing to share- to possibly help her keep hope that there are tomorrows. 

Share this post


Link to post
Share on other sites

Cynde,

I've got a survivor story.  Here is the short version - https://sites.google.com/a/redtoenail.org/chronicles-demo/home/tom-galli There is a longer version - the book Scanziety.

How do you keep it together and how do survivors find hope?  These are two of the most difficult questions posed by anyone involved with lung cancer.  My wife was my caregiver and I stole courage and hope from her, shamelessly.  On day one, she told me I was going to get through this and almost thirteen years later, her message remains the same.  She was my rock against the hard place of lung cancer.

So, short solution - be the rock but in doing so, understand the reality of lung cancer, persistence. As you mentioned, her treatment will not be one and done.  Recurrence is normal and treatment failures should be expected.  I had a total of 4 failures in 5 treatments till I achieved NED (no evidence of disease).  My active treatment spanned more than 3 years. But, I am alive as are many others on this site.  If I can live, so can your wife.  Prepare your wife for the long treatment game.

My treatment mayhem was in the dark ages of lung cancer treatment - 2004 through 2007.  Since then, whole new fields of treatment, particularly for adenocarcinoma, have emerged. You mentioned Opdivo. This drug is one of the new immunotherapy treatments that has produced dramatic results for some.  Read about it here - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy

Take some time and let this settle in.  Part of being a rock is learning about lung cancer.  Knowledge is power and arms you with potential "silver bullet" questions for your wife's doctors.  My wife's silver bullet saved my life and it caused my oncologist to find another way.

You'll likely have many questions and this is a good place.  We are the lung cancer experts, not by education but by experience.  Ask away.

Stay the course.

Tom

Share this post


Link to post
Share on other sites

My husband was diagnosed in April 2014 with stage IV non small cell lung cancer and thanks to some of the new developments in treatment, he is doing well. Tom is right - persistence. That first month was holy hell - totally overwhelming.  Scary survival statistics from the web and a sense of panic. Here are a few things that have helped me -  First - make sure your wife is going to research hospital where they are familiar with the latest and greatest treatments and can help find clinical trials that may be appropriate. If you or your wife has questions, write them down and find out how to get in touch with the treatment team, and bring all them to your appointments. Make sure the hospital, doctors and insurance have authorization for sharing all information about your wife's treatment.  There are times when you'll need to track down appointments, test results, and straighten out billing and insurance problems.  Be positive without negating her feelings. We asked our friends for recommendations for funny movies and watch them, especially when waiting for scan results.  Keep up physical, social, and career activities when ever possible. My husband rides his bicycle with a group of guys, usually doing 20-30 miles 4 or 5 days of the week. The days he doesn't ride, he goes to the gym to swim and workout. He plays poker once a month and meets with a book club monthly. He is still teaching at a university -- all of this keeps him sane.  Fortunately his treatment lets him keep this up.  Whatever she liked to do before the diagnosis, encourage her to keep it up or adapt to whatever she can do.  Same thing for you - find something that you enjoy. I've really improved my meditation. Hope this helps --  please keep in touch

 

Share this post


Link to post
Share on other sites

Maybe it's because I'm the last person at the end of the day. Or maybe because I am the one always around. But it seems that my wife has an anger that only gets let out at me. That a million other people might have done her wrong today, but I'm going to be the one to hear it. And if I dare say something back, that don't I know she has cancer and she's going to die. And that she wishes god would take her in these six months. I do my best to just listen. But something's I will not take as the final verdict. I will not give up on my wife. I will always keep hope that there is a option that will work. That there is always something the Drs and nurses can do to help with palliative care. It's hard to stay strong when the person you are trying to stay strong for won't seem to want to fight the demon inside. And I know that this is a battle her body will fight solo. But that I am here too, to love her through it and try to give her my every ounce of strength to keep pushing. And that she is my other half, so I feel sad and empty at the thought of her not wanting to believe in having hope so early in the game. 

Share this post


Link to post
Share on other sites

Cynde,

Your situation seems so familiar because my attitude towards treatment and outcomes was exactly like your wife's.  Like you, my wife bore the brunt of my irascibility. 

We laugh about my antics now but Martha reminds me of just how sharp her life on the edge was during my treatment.  Still, she was (and is) a rock.

I was overwhelmed by fear, anxiety and depression.  These three turned a courageous confident man into a nightmare.  No maybe nightmare is too meek; perhaps worst nightmare is better.  Still she was a rock.

Be the rock Cynde.

Stay the course.

Tom

Share this post


Link to post
Share on other sites

Tom, 

i know as her wife and her caregiver, that they are both large rolls to fill. And while I do my best everyday, I find that I am going through the processing stages myself. I have times when I am overcome with the emotions of what if. And though they may only be what ifs- they still come into my mind.

I work full time, as now we have transitioned to a single income. That carries its own stresses. And I come home everyday to help take care of her. Her bone mets has recently (1wk ago) caused her to be wheelchair dependent. And even more recent has been a shortness of breath that is keeping her from sleep. I feel as if I am calling the nurse/dr almost everyday with another question  or hope of comfort to what is distressing her.

I never discourage her from anything she feels she wants to do. I only warn her to be careful. As many of the things she wants to do are things where she would come in contact with other people. And though her chemo allows that her counts won't bottom out- I still worry about her getting the flu or a cold or steep throat. That many people are "aware" she has cancer, but I don't think most people realize the delicacy of her immune system. And simple things like sharing a soda or kissing her goodbye could be a bad thing if they were recently sick. That I want her to live every day happy- but I don't want to loose her to a cold.

Maybe it's selfish of me. That I want her to want to live as long as possible. Because we have only been together 5 years, and it doesn't seem anywhere near long enough. Again I guess part of my processing of emotions. She tells me she feels like everybody is coming to her for their strength to handle this. That she feels she doesn't have the opportunity to feel sad about any of it. I tell her she doesn't need to be strong for me, only for herself. And I will give her my strength and fight when she runs out of her own. 

Learning my own emotions, fears, and anxieties with this demon- and doing my best to process separately from hers. Because I don't discount her feelings and emotions. Not the least bit. I do feel like it is a realization to me that there may be some things I have to let go of that may not happen. Things seem to be changing so fast, and it's scary. 

Im not sure what to do when I feel like I'm crumbling. Prior to all this, I would be able to go to her. As she is my best friend. I sometimes think maybe this is all a terrible dream and I will wake up to what our life once was. If only. 

Im doing my best to go day to day. Sometimes hour by hour or even minute to minute. I have no intent of being anywhere but by her side, as her wife, her rock, whatever she needs me to be. 

Share this post


Link to post
Share on other sites

Cynde,

I'm sure you are doing your best everyday.  Everything you've explained exactly defines the plight of a caregiver to one suffering from the ravages of lung cancer.  You are doing well and your efforts in terms of your wife's expectations and outcomes are vastly more important than you realize now.

Stay the course.

Tom

Share this post


Link to post
Share on other sites

My wife has told me she's ready to die. That she will continue treatment, but is at a point to make peace with it. That she is already sick and tired of being sick and tired. 

I struggle with it. That she says she is pushing me away now because she feels it will hurt me less later.

I am doing my best to respect that she needs her time alone to process everything. I want, yearn, to be near her. But at this point it isn't what she wants. I am still taking care of the other stuff. The medicine. The appointments. The house. But there is a distance between us that I can't break. I am not giving up. It is just hard. I asked her to allow me in. That I will do my best to be selfless, understanding and compassionate with putting her wants and needs before my own.  

Share this post


Link to post
Share on other sites

Dear Cynde,

Being a caregiver to a loved one with late-stage cancer is not easy.

Have you considered any in-person support groups for both of you? Counselling is often underutilized.

Also, I wanted to echo Tom's words that there are often options every step of the way. So many with stage IV lung cancer are living much longer, happier lives than we could have imagined 10 years ago. If you use Twitter, you will find many writing online at #lcsm. If possible, try to stay aware of the clinical trials that may be available - they often offer great care.

Kind Regards,
I


Sent from my iPhone using Tapatalk

Share this post


Link to post
Share on other sites

At treatment yesterday my wife asked for a social worker to schedule a family meeting. She wants to tell everybody that she feels she has a timeline. 

She told me again of how she wants to be at peace with her timeline. That she feels with treatment she is defined by the timeline that doctors are giving her. And I get it, she wants to make everyday count. 

I try to not define our life by the hard moments. Coming home from chemo, and her body is worn out. My mind matches her body. My body feels the toll. And that she still wants me to be ready to begin to let go. 

I asked the doctor about managing the discomforts. The pain options other than OxyContin. We discussed neurotin, to deal with nerve pain (as she has lived 30 years with MS). That I know I can't cure her as much as I would like to. But I want her to be in as least pain as possible. She recieved zometa for bone pain. If anybody has recieved this, if they can give me an idea of how their body handled it. 

I asked the doctor if she has any of the mutations, just so I feel I have the idea of places to search for trials being run. Her testing came back negative for ALK and EGFR. They are going to order for the rest. She I guess chooses to know only what she wants- but I want the "silver bullet". Because it means the world to me if I can help her become a survivor story. Even if it's another year, or 5 or 10. I'm not ready to lose. I want to go know I gave it my all. Because any less, despite the outcome I will feel as if I failed her. 

Share this post


Link to post
Share on other sites

Today marks another day I wish didn't exist in the books. Friday was chemo day, and it was a rough weekend to follow. Fever and pain spiked terribly high, beyond anything that could be handled at home. So off to the ER we went. Labs and tests and exams, with no answer to fever source, iv drugs for pain, and the discovery of two more lesions on the spine. Oncologist came in this morning, with the prognosis that this is a game changer. That radiation may/may not be considered- as it may only help with the pain. That initially the game plan was to attempt to go after the source tumor and lesion on pelvis- and be able to hope for long term survival. Now, it's all about time. That she has two more rounds of chemo, and ct scan of chest shown this am- it appears tumor in lung is drastically reduced. And then radiation to the upper spine. Which will burn her throat. Then fingers crossed and prayers that it buys her a year. Before any reoccurrence. I am truly in auto pilot today. I don't know that I can even think. 

Share this post


Link to post
Share on other sites

Cynde,

You are truly hoeing the hard row.  From what you've told us, your wife is getting all that medical science can offer.  Her high fever side effect was something I never experienced during my 18 infusions but pain was almost unbearable.  So I know what she is feeling.

I can't offer you any advice but to stay the course.

Tom

Share this post


Link to post
Share on other sites

Cynde,

Every cancer patient should be so blessed to have someone like you in their life. I am so sorry that the two of you are having to endure the seemingly unendurable. I have said before, and I still believe it, that being the caregiver is harder than being the patient. You have all the stress, worry and emotional pain, not to mention the physical toll to your body, and frequently not enough emotional support & sympathy from others since you are technically not the patient.

It seems we  humans often lash out at those closest to us...maybe because we subconciously feel we can get away with it with the person we trust the most to not leave us or strike back. It sounds as if you are doing everything humanly possible for your wife, and her medical team is doing their part to acheive the best possible outcome. Please don't forget to take care of yourself & try not to take her anger personally. I imagine she is mad as hell at cancer, the unfairness of it all and not at you.

I hope you have some supportive people in your life who can be there for you. This is a good place to find empathy, much hard-earned wisdom as well as hope &  encouragement. I wish I could just give you a big hug...a cyber-hug just isn't the same, but here's one anyway ((( ))). Best wishes...please keep up posted.

Ruthie

 

Share this post


Link to post
Share on other sites

I have learned selflessness in these passing weeks. That all I can do is love her through it all. When things get hard, love harder. 

The truth about love 

It's more than romance. 

It's more than smiles. 

True love is about going through every motion of your day with pure love in your heart. 

It's about when things get rough, about not giving up. 

It's about when all else fails, love harder. 

Love, love is the greatest feeling. It hurts too. 

Love is what drives me each day. To wake up, to get through my day, to pull me through the moments when I want to give up. 

Love is about when the storm is overhead, that you let it be your shelter.  

Love is being there in the dark times. 

Love is pushing through it all and still seeing that person the same way no matter what.

Share this post


Link to post
Share on other sites

So both me and my wife are in our preparations for this week. Thursday is her onc visit. With Friday being chemo day. Both of us with very different meanings and anticipations. For me, it's the making sure I'm stocked on supplies for a rough weekend. Enough of everything to get through these rough days. Anticipations of fever and pain and how to handle. Blankets washed and stacked for the chills. Her favorite snacks now that tastes have changed, all stocked in the pantry. All meds ordered through pharmacy for Wednesday pickup. Taking in the last few good days before this cycle starts is over. 

I recently read an article about Keytruda vs Opdivo. Definitely something to discuss at Drs. Also we've talked and weighing the option of going with Xgeva, as it may have the same side effects as Zometa, which landed her in the hospital. Will be talking more about pain management. I've heard some good things about gabmetin, so we're going to bring that up. 

Her moods are on a rollercoaster this week. It's hard to feel her be distant. I understand she's processing, I just wish I could fix it all. We have made code words for when it's "a day". We call it a "tude" day. I call it a turd day in my head. It doesn't make me love her any less. Just a reminder that she needs time to flush it out her mind. 

Recent dr visits have altered the game plans. And so we are rolling with the punches. Results of mid way CT scan gives me a bit of sunshine. Mass originally present in lung is completely gone. So from here it's dealing with the mets. The spine mets C7 & T2 are real pains. Causing her daily headaches and neck pain. The pelvicbone lesion makes walking painful. And she hates the wheelchair. She won't use it unless the ability to walk has left her. And on those days,she feels defeated. 

We have discussed the use of hospice and utilizing their services. And with this next round, we will introduce them into our home and life. 

Ive also started seeing a therapist, bc sometimes I just need to tell someone all the things I hate about her cancer that doesn't say a word back, and offers no opinions on how I am dealing. Bc I am still dealing, everyday. I still have my "moments" when the fear overcomes me. But I try my best to be strong in her presence. 

Share this post


Link to post
Share on other sites

Cynde,

We know you are doing the right things.  Please remember to take care of yourself.  Try and get a break for an hour or so a day so you can refresh your mind and spirit.

I see very good news with the lung mass gone.  As you sort through the next best chemo recipe, ask about radiation for the C7 and T2 mets.  Perhaps stereotactic radiation could fry the spinal mets, reduce bone pain, and improve quality of life. 

Stay the course.

Tom

Share this post


Link to post
Share on other sites

Cynde,

Sounds like you are doing everything possible to be a supportive partner and I'm happy to see that you are seeing a therapist for yourself. Great news about the lung mass; savor your victories whenever you can!  

Ruthie.

 

Share this post


Link to post
Share on other sites

So it's been a while since I've been here. 

Radiation was done. Bone pain has not eased off. New pain areas have dr concerned. New tests to be done this coming week. If it has grown, or spread they say four months tops. I don't even know my own emotions, I feel numb. 

 

Share this post


Link to post
Share on other sites

Cynde,

I was praying no news meant good news.

I can't imagine not knowing my emotions and that would certainly result in an isolated numbness.  I can't begin to advise how to deal with the survival projection.  During my treatment, encountering those projections was maddening.  I was once on the six-month clock.  My wife and I talked, a great deal, about how we wanted my end time to play out.  She reminded me there was still living to do.  We spend hours going though our photo archives savoring our life experience.  The vacations, the celebrations, the little things that defined us and united us and we found joy in the memories.  Perhaps for the first time, this joint recollection of our lives introduced me to real joy.  I found meaning in my life and fulfillment and joy in our lives.  It was all there: the photos, letters, funny gifts, embarrassing moments, accomplishments, shared events, unbridled happiness and vast disappointments.  It was all there lacking only the joint recollection.

Discovering joy in the things and experiences we shared was a surprise for both of us.  I was in the throes of nearly three years of continuous lung cancer treatments and at the time of my survival projection, nothing but hope remained as a treatment alternative.  The joint recollection of our lives and my discovery of joy led to a new understanding about life.  Joy is life's gift if we are open to receiving it.  Of course in the mayhem of treatment, joy was the furthest thing in my mind but as the recollection revealed, I was perhaps experiencing this intense purpose-giving emotion for the very first time.  This set the tone for my six-month journey, finding something in each day that brings joy.  I found and find still that it is often the little things that yield the most opportunities.

We planned my journey, not in a day-by-day sense, but in terms of a daily objective, one that I still abide by: to find and revel the joyful moments that life allows.  Medical technology in the form of newly approved stereotactic radiation intervened to extend the six-months to nearly 13 years.  But I still abide by finding joy.

Stay the course.

Tom 

Share this post


Link to post
Share on other sites

So radiation never did anything as far as frying the tumors. Did increase her claustrophobia.  She went back on maintenance chemo of avastin. Just finished round 3 of that. 

 

Last week was a follow up pet scan. Tumor in lung is back to original size, spine is still the same, new spot on rib cage, and a possible new spot on tonsils. Referral to ENT to look into it more. Muscle weakness in her arms has increased. She describes as "flu" arms. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...