Cynde

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.