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One year and counting

Posts: 5
Joined: Mar 2012

16 months ago I moved across country to be with Michelle, the woman I love. We met at a wedding, did the long distance thing for a while and the decided that life is to short, and moved the 3000 miles so we could be together. We had a lot of fun the first few months, but she seemed to get so tired. Allergies, a cold, Just need a good night sleep we said. She begun to have some pain, and when it didn't subside she had a colonoscapy. 4 months after my arrival, just about 12 months ago now, she was diagnosed with Stage III-c Colo-rectal cancer.

You can't help but to look at survival rates, even though you know that there are new treatments, and that the numbers don't account for that, and that the statistics are essentially meaningless on an individual scale. Still, and night, when those demons come and whisper in your ear, it's those numbers that dance behind your eyes.

Oh ****.

I thought I knew what to expect. My mother had a a battle with Lymphoma a little over a year before my move (Truthfully, the idea that none of us live forever was part of my motivation for the move. We only have so many days, spend them with people you love.) The chemo had been miserable for her, and both she and my father had some moments of despair, but when the smoke cleared she was (and is) still standing.

Michelle's battle is very different. Before the treatment began the tumor was growing. As it grew it pushed on a number of nerve endings. It started as soreness, and built to agony. 40 MG of Oxycontin a day, and two 5-325 Percocet every 4 hours didn't so much stop the pain as much as make her sleep until about 20 minutes before the next dosage was due. I would set an alarm on my phone every 4 hours so if I was asleep I would wake up and make sure she got the pain killers. If I didn't she would wake up screaming. Once the pain gets ahead of you, it's harder to get ahead of it again. Fortunately she responded well to the chemo, and a few days after the first treatment the pain had subsided quite a bit.

The chemo was much more aggressive than my mother's. She had to go in every week, and then wear a bottle that continued to infuse the chemicals for two days after. My mother's hair had fallen out all at once. Michelle's came out in stands and clumps over the weeks. Somehow, that was harder. In darker moments she will apologize, and tell me it's OK if I leave, and go back to the West coast. Three. thousand. miles. I love this woman enough to move that far from the only home I'd ever known, I am not leaving.

The radiation came next. As bad as I thought the chemo was this was worse. You see, for this there was chemo AND radiation. She got no break from the chemo this time. She had to wear a pump 24 hours a day, seven days a week. Her hair, which had filled back in all short and curly between the treatments did not fall out this time, This pleased her quite a bit. The pump not so much. It was summer, and hotter than hell. I'm not used to the East Coast humidity. the pump made showers difficult for her, but we worked it out. The radiation was something else. As I said, it is Colo-rectal cancer. you don't think about it, but radiation moves through things, and the location of the tumor meant she had some burns in some very sensitive places. The pain was bad, but not as bad as before the treatments started. Still it was a great relief when that round ended.

The colon resection was scheduled for Halloween. We both felt some relief going into it. This was the last nasty bit. She even wore a pirate hat and an eye patch when she checked into the hospital. The nurses were quite amused, as was I. The surgery was nearly 12 hours long. Myself and her Michelle's mother were the last ones in the waiting room. the surgeon showed up and it had all gone well, that they had been able to get all of the tumor, and that, thought he'd have to wait for the biopsies, he felt it looked good. The biopsies would bac up his gut instinct. They let me in the recovery room shortly before midnight. She looked waxy and beat. "It hurts she said." And then recognized me and smiled. I went home and slept deep and dreamless.

Recovery went OK. After a week in the hospital, she could walk well enough to get around the apartment and function well enough to eat, sleep, etc. and they sent her home. She has an ileostomy, but it's temporary, and we learned to deal (not to say it is without trouble. I think sometimes it is the thing that bothers her most) About a week after she got home we had a where I made popcorn, and we watched a Mythbusters marathon together on the couch. She fell asleep leaning against me. i knew things were going to be OK.

Except they weren't. After that every day she was in more pain. it would build and build. We'd call the doctors and they'd say "well, you did have major surgery..." and at first we would sort of look at each other and go along with that. But it got worse. So we went in, and the doctors said, "Major surgery..." And I would push and say shouldn't things get better? Not worse? but they would sort of shrug and say everyone is different. Soon I was setting the alarm on my phone to make sure she got pain killers. She could barely stand. She got dehydrated, and started to hallucinate from the dehydration (she was sleeping 23 hours a day, and would not drink or eat) and pain killers. She would ask me who was there, and the scream at me when I told here there was no one in the apartment, but me and her. For four days she lay in the hospital bed alternating between screaming, crying, and passed out. I called the doctors, and they admitted her tot he hospital. Ever night they would say they were going to do a CAT scan that night, and when I returned in the morning I'd be told they changed their mind and didn't think it was necessary. That the pain was from the dehydration. One of the older nurses became upset. She agreed with me. This wasn't right. I over heard her talking very sternly to one of the doctors, and they finally did a CAT scan. There was an abscess where the tumor had been. It was pushing on those same nerve endings, and causing the same level of pain. A few days after draining the abscess, she was doing a lot better. With some physical rehab she was home by Christmas, and we had our nice little Christmas with a few little goof gifts to exchange, hot coco, and A Charlie Brown Christmas.

And for a while everything seemed OK. She even started working again (albeit in a limited capacity). But pain returned and she felt sick. and while it was nowhere near as bad as before, it is here that something clicked in her. She became depressed. Snappy. She would say some very harsh things to me. Almost every night she would wake up crying in the middle of the night. It would wake me up, and I'd try to comfort her, but there was little I could do. On days I worked (I have a good job, but deeply weird work hours) she would tell me to go back to sleep, but the apartment is tiny and there is no place where I could not here here. Even if I couldn't hear her, I'd know how upset she was, and have a hard time sleeping.

"I'm going to die." she said with a sniffle. It was the first time she had said that.

"No you aren't." I said, "We've been through the hard parts. We're on the downhill slope now." But those Demons would whisper in my ear. Sometimes when I worked the overnight and it was slow. I'd look up those cold statistics, and weep.

The pain got worse. There was a fistula. The doctors repaired it in an outpatient procedure. She had been dreading the hospital stay, and fortunately didn't have one.

Again though the pain got worse. And worse. And she got more and more tired, sad, and angry with me. She'd accuse me of hating her. She could barely get up again. I'd call the doctors and tell them. More pain meds. I'd tell her we should go in, so that could see how much she was suffering, but she didn't want to go.

"You don't get it, I'm done. I'm not going to make it!" she said.

"Please don't say that, your kicking the cancer's *** with both feet." I reply

She had a follow up with her Oncologist. They want to do one last round of chemo "just in case." She didn't let me go with her. She's been doing that a lot lately. Not telling me what doctors say, and getting angry when I ask. She'd also been so tired, and dopey. She's fall asleep when I asked her a question. "Go hang out with you friends or something. you need a break." she's right, I do. I can't tell you when I got more than 4-5 hours of sleep a night. I've been an insomniac since I was a child. Once I wake up, I am up for hours. The thing is, I really don't have any friends here. There is no one to go out with. I've spent every waking moment looking after her, cooking, doing laundry, picking up prescriptions, etc. So, I when she heads out I explore the neighbor hood. I've really not had much time for that sort of thing. I don't have an back up or support. Visiting nurse service came for a while, but they just took he blood pressure, and talked to me about God. I get the call a few hours later. She's on her way to the emergency room. Her kidneys are in failure.

"I'm gonna die! I'm gonna die! I'm gonna DIE!" the last die turns into a shriek that pierces my skull and make me involuntarily cringe.

"You'll be alright babe, I got ya." I say.

Another hospital stay. They determine that the kidney problems are because she cannot urinate properly. With a catheter the kidneys return to normal. But there are swollen lymph nodes. The oncologist tells her not to worry about that right now, but he tells me (I am her health care proxy) that they could be the source of the problem, and that it could be cancerous, but he doesn't know anything yet. He wants to wait a bit to see if the swelling goes down. He says if they are cancerous it could be very very bad, but he doesn't want to worry her yet until he has a better idea. Every night she would call me around 3:00 AM, terrified.

Two weeks ago that was. They sent her home, and though the kidneys are doing better the pain is worse. I don't get more that a hours sleep at a shot any more, and never more than 4 hours a night. I learned in wild land firefighter training that you can run indefinitely on 3 hours a night. You're unlikely to collapse and you won't hallucinate. You'll just be really unhappy.

"I give up. I'm sorry." she said softly.

Though I felt my heart wither and limbs grow heavier than I thought possible, it took her hand in mine and said, "You will be OK. Your' winning this fight."

She spends most of her awake time sobbing right now. She's seen the doctors almost every day this week, and goes in again tomorrow. When she's with them, she seems together and strong and says everything is OK, but as soon as they are gone, she sobs and tells me how bad the pain is. She begs and pleads with me to make it stop. To help her. Bu when I ask what I can do she says nothing. At night she sobs and gets angry with me when I try to comfort her. "Get some Sleep!" She says, "You look like hell! You need sleep!" She's right of course, but the apartment is tiny, and as tired as I am, it's just not possible. So I sit and hug her, or hold her hand. but I'd be lying if I wasn't seething sometimes inside. I want to sleep so bad. 8 hours. Uninterrupted. I fantasize about my old place out in the quite of the woods. No man made light, and almost no sound. The kind of quiet where you can hear your own heart beat. I dream of sprawling on the middle of the bed and pulling the covers up to my head, and drifting off in a warm haze until late the following morning. But it won't happen. I will be woken up. She needs me. Even upset I keep calm. Anger will only make it worse. Tomorrow she goes to the doctors again. I hope they take her complains of pain seriously, and that she doesn't gloss over her pain when she talks to them. I am at my wits end. I don't know how much more I can take. I'm so tired physically, spiritually, emotionally. My family is to far to help, and her family are having their own serious crisis that prevent them from really helping. Her brother says he will, and he would, be he's as burnt out as I am now and has his own serious health issues. What fuel do you burn when you've got nothing left?

I've not told anyone one person all of this before...

One year and counting...

Posts: 21
Joined: Feb 2012

I just read your story three times.My heart goes out to you and your wife.I'm going through the same thing with my husband. My husband has stage 4 lung cancer.He has had a lot of chemo and radiation.Like you we thought he had it beat ,but last week we were told the cancer has spread to both lungs and the lyump nodes.He is having a pet scan on Monday to see if it has spread any where else.We will see his doctor on Thursday to find out what his next course of action will be. They have already ruled out surgery because his lungs are so bad.
You did not say how old your wife is. My husband is a young 68.He is a fighter and is very positive. Like you I have read where he may only have six months to live.
One of the things you wrote was the chemo took her pain away.My question for my husbands chemo doctor is Would he be better off stopping the chemo and living out what time he has left without being sick from the chemo or is the chemo taking his pain away? At this point I really don't know.
My husband is on oxygen 24/7 and can do very little.Since he has had the chemo and radistion is he tired and very weak all the time. I'm not sure how much more he can handle.I wait on him hand and foot and go on very little sleep.
Unlike you I do all adult children that will help.Some how you have got to get some help or your going to get sick.Would insurance pay to send some to your home to help you?
You are a wonderful man for being such a good caregiver. They say what comes around goes around. I sincerely hope that is true for you.
I will put you both in my prayers.This has been a long year for both of you.I hope things start looking up.
If it makes you feel better to write do it.I send e mails to my friends all the time because it is easier for me to write than talk about it.I cry when I talk about it and it relax's me to write about.
Some times I just get on this site and read what other people have wrote and than I see someone like you that is worse off than me.Than I count my blessings for what I do have.
Please take care and try to keep your chin up!

Posts: 5
Joined: Mar 2012

She's 40. I'm 38. I think we were lucky that the chemo helped with that pain. She responded so well to the early treatments.We had visiting nurse service and a home healthcare worker coming for a while, but HHC mostly talked politics and wasn't much help. The VNS were nice, but they were mostly drawing blood and checking vitals.

I hope things go well for your husband. I hope you have a chance to rest as well.

I don't think any of this is easy on any of us. We can hope that things get better. I've got a little hope left still, so I'll cling to it tenaciously.

Posts: 1846
Joined: Aug 2010

She was going to the doctor tomorrow. Did she go?

Wondering where you are now in the prognosis.

I am sorry y'all are going through this. It sounds like you are a devoted, albeit exhausted, caregiver.

There's got to be someone to help with things - picking up prescriptions, some cooking or something. When people ask, be sure to give them an assignment. Most people really do want to help - they just don't know what you need done.

I know this is hard.

Come back and let us know how things are going.

Posts: 5
Joined: Mar 2012

The prognosis is good so far. they are still watching the lymph nodes to see if the swelling goes down before proceeding further with that. The kidneys seem on the mend. She's still in a lot of pain though. Fortunately (after much badgering by me) they they are taking the pain more seriously, and investigating it more seriously.

I don't really have a lot of help available. I'm trying to be better about getting help, but it's hard. I still do not get nearly enough sleep.

lostmyheart's picture
Posts: 7
Joined: Apr 2012

To all you caregivers out there, may God bless you. I was the sole caregiver for my husband during our battle with colon cancer for 18 months. I truly understand the lack of sleep, the frustration , the exhaustion and overall overwhelming feelings that you probably experience. What used to make me feel so alone was when I would tell people how much sleep I was NOT getting, (my cry for help, I think) they just didn't understand...they kind of just blew it off like it wasn't important.

I do understand what you are going through and I am so sorry. It is my true belief that both the patient and caregiver suffer terribly because of cancer. And the caregiver is just expected to be able to function 24-7 with no sleep, no time to eat properly, no time for yourself, etc. It is an awful situation.

Sadly, I lost my husband 25 days ago and am missing him so very much. I hope none of you lose your partners but I can honestly say that if you do, all the bad stuff that you are going through is instantly forgotten. But something ironic is that when I was taking care of him, all I wanted to do was sleep....now that I can, I find I have insomnia. :/

Posts: 306
Joined: Jan 2010

Family, church, somebody. Her life is turned upside down and she needs emotional support to work through it. My wife is St4 Colon cancer, almost 3 years, so 1 year was 2 ago for me. Some things to consider:
1. Find some docs who are serious. A patient in pain is not being treated IMHO.
2. Rat her out to the docs! I mean it. My wife tells them everything is alright (as if they need an easy case), then comes home doubled over in-pain, can't walk, etc., like I have the REAL answer. So I started pulling out my notes and fill the docs in. She didn't like it at first, but now the docs just look at me and/or our daughter to get the scoop.
3. There are mood pills for her, and sleeping pills for you. Get 'em.

My wife is getting a PET/MRI right now. It's the next phase of treatment.

Good luck. Your heart is in the right place.

Best to you.

SlowRollin's picture
Posts: 75
Joined: Nov 2011

You cannot last without getting some type of meaningful rest. Even just one night to prepare for the upcoming week will do wonders for the both of you. I know it's hard to ask for help, but it's necessary and will only be for a short while. Your cancer center should have a list of folks that can offer support or help; it helps to be specific on what you need and the times needed. www.cleaningforacause.com for example is a service that is available.

My heart goes out to you and I think it's admirable how loyal and committed you are to her. Hang in there and keep being strong enough for the both of you. You can do this!

Please keep us posted and stay in the fight.

One Caregiver to another,


Posts: 5
Joined: Mar 2012

So the last round of chemo finished. As we waited in the lobby of the Oncology Center (or as Michelle called it, "The Cancer Mall") for a car service I snap a picture of her with my phone. She's smiling radiantly with just a hint of question. I tell her that I took a picture of her the first day of treatment, so we've got to get one on the last. She laughs.

A few weeks later we are waiting in the same lobby, for the same car service, and she's crying. There are still some traces of the cancer, but troublingly the spotting is on her lungs and spine. I take no pictures that day.

She sleeps on the couch a lot the next few weeks. This is never a good sign. She does this so she won't keep me awake when she's not feeling well. Slowly, the old specter of pain raises it's head again. One night she's in bad enough pain not to chase me out of the room when I come to check on her. I sit on the couch and hold her until the percocet kicks in. It only takes the edge off. "I'm really sick." she says, "I don't think it's occurred to me before how bad this is. I could really die." This is different than when she would ask me if she was going to die. She's so calm about it. Before when she'd say, "I'm going to die!" it was a moment in time of panic and fear. Never a carefully considered thought. I break.

I begun to say, "Your gong to be OK babe." but all I get out out is the "y" and the rest of the words are obliterated by a sob that comes from deep inside. For several minutes I sob. I can't breath. Every time I think I can speak another sob comes. She hugs me and runs he hands through my hair and whispers she doesn't really think she's going to die. She says she knows she'll be OK.

She's scheduled to for an evaluation before the next round of chemo in a couple days. She should start it in a week. Her pain keeps getting worse.

I go with her to the evaluation. she's scared but would never admit it. I'm concerned because her pain keep increasing and she's getting weaker. She having trouble standing up. She can be macho, and I want to make sure she brings it up to the doctor. They do some blood work, and shortly after we're in an ambulance going to the hospital proper. Her kidneys are failing again.

A few more weeks in the hospital. She had stints placed in her kidneys. She's in a lot of pain, but the doctors don't seem worried about that. They are more concerned with her kidneys. When I'm not at work I'm in the hospital. We watch the food network or Project Runway and laugh. I buy her trashy magazines and apple juice. Eventually they say she can come home. She's gotten so weak after two weeks in bed that she falls and hits her head on the way out of the hospital. She's so frustrated and upset, and afraid they won't let her go home. They take her to the ER and do a head CT, decide she's OK, and we go home, with a bunch of prescription for heavier pain mes. Fentanyl patches and dilaudid.

That night she tries to stand up from the couch and she cannot. "Oh my god! I'm bed ridden! I'm pathetic!" she cries.

I hug her close and say, "You are so not pathetic. You're my badass babe!" I wrap my arms around her and pull her to her feet. She looks at me in awe. I feel like Superman. this become our routine for the next few days. Anytime she needs to get up, I wrap my arms around her and pull her to her feet. Once she's up she move, albeit a little shakily, with a cane. We walk the length of the hall in out building to help build up her strength, but the pain is getting worse, and I have to go back to work soon, which will mean she'll be home alone for 12 hours straight for 3 days in a row.

In one horrible moment when she reaches up to hold on as I lift her, she reminds me of a child. She and I wanted to adopt, but after all this I didn't think that we'd have a chance at it with her health history. I hold my tears until later, and keep this thought to myself.

Her brother comes down to help. He'll stay with her while I work. The first day I work he calls me in the morning. "She's in so much pain. She though she better go to the hospital." I spend the rest of the day in a daze. On my lunch break (I work a few blocks from the hospital) I run over and check on her. She smiles at me but doesn't speak. She's stoned out of her mind on something.

Each night after work I go to the hospital. The nurses know me from the last stay. They let me stay late, and bring me juice and sandwiches. Michelle is so drugged up she forgets I'm there when she's not looking at me. I try to talk to her, but she can't follow what I'm saying. I end up just holding her hand and telling her I love her.

A week and a half later I get a call at work, they are sending her to a physical rehab facility. Same one as last time, so I know the people there are good. I feel so relieved. It's the first positive news in a while. Her meds have been cut back, and she's sounding like herself again. I take the hour long train ride up to see her every day I don't work, and some days that I do. She's so weak she can't really even sit up. She's always so happy to see me. We hold hands, talk, watch bad TV. She sends me to the Kosher Deli to get her food, but I notice she never eats it. "You've got to eat babe."

"I'm not hungry right now." Is her reply. "I'll eat it later." but she never does, I find the food the next day untouched.

One day I arrive and she's not right. She's incoherent. I tell the nurses at the rehab, but they sort of blow me off. After an hour or so, she suddenly looks at me and says, "Honey, I cannot breath."

My world stops.

Dare devil ambulance ride with lights and sirens. ER room. ICU. Cat scan. The doctors pull me aside and start asking about her wishes for end of life care. Wait? wasn't she going to be OK? didn't the oncologist say she was doing well? Why are you asking me this? why do you say it's in her lungs? What do you mean spotting on the brain stem? Is this why she can't breath? Why she's uncommunicative? Is she going to be OK? Pleas tell me she's going to be OK!

I call every family member and friend of hers I can think of. They call ones I don't think of. She has one good day where she talks to us. Our last words are, "I love you babe!"

"I love you to" she replies. It's the last time I see her alive.

"She didn't suffer." The doctors tell me. It is little consolation.

Four and a half weeks ago a hole the size of my Love was torn in my life.

dianelynn41's picture
Posts: 71
Joined: Jan 2011

I am so sorry to read that she has passed. This is the first time I've read your post. When you posted the first time my husband Roby was in the hospital. So much of your story sounds like ours. Between March and June Roby had 5 hospital stays. They basically told me the last time that we needed hospice and there wasn't anything else they could do. Roby refused hospice, said he wasn't ready to die.
He's still here doing better is some areas but the tumor is growing. He's got a recurrence, tumor grew back in original spot. Doing chemo now.
For months I functioned on little or no sleep. Every sound and move he made I jumped, still do. But it's gotten better in that area.

A friend of mine said every couple's story is like a fairy tale, when I read your's I thought of that. You were together a short time, but it was like a fairy tale, you were her hero.

You are in our prayers.
Diane & Roby

grandmafay's picture
Posts: 1639
Joined: Aug 2009

I am so sorry for all you have gone through, but I am so glad that the two of you found each other. Seeing a loved one through the end is very difficult. There are no words that will make this easier. Maybe knowing that many of us on these boards join you in your grief can help. It isn't that misery loves company. It is just that we feel less alone knowing that there are people here who understand. Each of us must grieve in our own time and way. Yet, we all find that we must move forward. One step at a time. For now, just put one foot in front of the other. Time will help, but it will never totally heal. Take care of yourself now. Fay

Posts: 51
Joined: Jul 2009

Badger: I can relate to so much of your posts. I pick up my wife the same way, trying so hard to not hurt her as wrap my arms around her to lift her out of bed, off the couch, off the toilet. And then, hold her up from behind as I walk with her so she won't fall. I lift her into bed full time now, where I used to let her sort of stumble into bed and I'd adjust her after landing.

The crying is the worst. She'll be fine and then in the evenings, there's some crying where the gravity of it all lands. I can't say, 'it'll be okay,' because that wouldn't be the truth. It won't be okay. Not now and probably not ever. Only degrees of being okay.

My wife has a tumor on her brain stem which was radiated three weeks ago. It's helped a little with her speech and some swallowing. She's not coughing up her food and drink as often. But I am always right there with a towel under her chin to catch whatever drops from her mouth.

I used to be a neat freak. This hell will change all that in a minute. Hang in there, Badger. Get through this and think about the man you are for sacking up, moving across the country with no friends, and making a life. That's what you've done.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

MrBadger, your post made me weep. My heart hurts so much for you. I felt like I was there with you. Some of the stuff you wrote….I too really identified with you. Fentanyl patches and dilaudid. Having my son say, "I am dying," knowing that they are truly battling for their lives. "She didn't suffer." They tell me that my son (29, on hospice, near the end) isn't suffering, and it doesn't console me either…though I am very grateful that he is not in pain. They asked end of life questions and have I picked out a funeral home yet. (That question came from hospice.)

You are an amazing man. Your Michelle was a blessed woman to have you by her side.

I used to help my son up the same way. He is 6'3" and he used to weigh 180 lbs, but I could pull him up into a sitting position, and then wrap my arms around his chest, under his armpits, and I could raise him up on his feet. I thought it was bad back then…today I would give anything to be able to do that again.

I hope that in time your heart is able to heal. I guess we learn how to go on, but life will never be the same.

Love, blessings, peace, and comfort to you,
Cindy in Salem, OR

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