How do you cope?

[DMBwife]

Hi,
My husband just went through HDC a few months ago. It is definately tedious and those long days rehydrating are awful. Nathan will be soooo sick of the hospital! and water too! Just know that it is extremely effective and it will all be worth it when its over. My husband couldn't do anything most days except sleep or read a paper. I did tons of sodoku and internet surfing. Stay positive and tough, thats all I could do.
Thinking of you,
Erin

[shesnoangel]

Hey guys,

Thank you as always for the support. I don't know what I would do if I didn't have people to talk to who truly understand what we're going through.

Nathan was released from hospital on Thursday night. I took the day off work Friday to take care of him. He was pretty tired/weak/exhausted. I needed to make sure he drank lots of fluid and stayed on top of taking his dex.

Over the weekend, he REALLY bounced back. Seeing some positive things happening. His coughing has reduced considerably. As well his appetite is in FULL swing. Let me tell you, on Sunday he ate three hot dogs for lunch and for supper ate three slices of pizza. He's feeling well enough to be sarcastic and joke around, which makes me feel really great.

So 8 more days of recuperating and then back in hospital for another week of TIP.

As well, in the spirit of this thread "How do you cope?" I realized I find solace in movies and TV. I figured I'd list a few of mine and encourage anyone else to share theirs. Lord knows, as I'm sure we all know, during treatment you tend to have a lot of extra hours to spend. Anyways, here are my top 5 cancer distraction movies/TV shows (in no particular order).

Movies:
1. Two Weeks Notice
2. Reality Bites
3. Hot Rod
4. National Lampoon's Christmas Vacation
5. Borat

TV:
1. Kath & Kim (Australian version)
2. Curb Your Enthusiasm
3. Eastbound and Down
4. Sex and the City
5. Always Sunny in Philadelphia

[Aegean]

2. Reality Bites

Love the movie and has one of my all time fave quotes;

"All we need is a cup of coffee, a pack of smokes and some good conversation."

Of course the pack of smokes is no longer PC, and certainly out on this site... but hey, still a great quote from a great movie.

[buster]

Originally Posted by Aegean

"All we need is a cup of coffee, a pack of smokes and some good conversation."

Of course the pack of smokes is no longer PC, and certainly out on this site... but hey, still a great quote from a great movie.

I take it you were a smoker and dont miss it at all

[Pattytricia]

Hi Nicole,

I have been reading your posts and just want to say how I admire what a great job you are doing in being there and supporting and caring for Nathan. You have come to a great place to share and get support. Thinking of you and praying for the best.
Take care,
P

[shesnoangel]

An update!

Since Nathan came back from his inpatient week of TIP two weeks ago, he has progressively felt better and better. So much so, that last weekend we did NORMAL things. Seriously, I have never had a more normal weekend in months. It felt so good.

Today I dropped him off at the hospital to start his second cycle of TIP. They had him in early for a CT scan and blood work, and obviously a follow up with his onc. Of course, my normally calm and collective self has been battling nerves and anxiety all day today.

BUT, I just got a text message from Nathan! His HCG was 11,000 before TIP and now is down to 850!! As well the CT scan showed that his lung mets are shrinking even more!

Such good news!! Gotta celebrate the little victories along the way. Going to spend the evening watching a movie and hopefully some visitors.

[rosc]

Hi,

I have had to go through it twice. I had it in 1990 and then 18 years later. So I have lost both. So coping has been very hard for me. I found that learning to live in the present moment has helped me a lot. Kind of the past is all ready gone and you don't now what is going to happen tomorrow, so you can't worry about. Easy for me to say, my chemo was over a year ago.

Anyway, there are many books out there that deal with this. Cancer is medical trauma, no doubt about it. It is actually is a form of PTSD for those who have cancer and for the caregivers. My wife and I have gone through a tough time just like you guys. I have been lucky to find a therapist who specializes in PTSD. Maybe if you found someone to talk to it would help you cope. Talking to someone who actually cares and understands cancer has helped me a lot, but it has taken me a long time to find the right person.

Also, some books to consider:

Mindfulness and Acceptance Workbook for Anxiety. John Forsyth

The Power of Now . Eckhart Tolle

The Way of the Journal for Healing. Kathleen Adams.

I wish you guys all the best. I hope this helps.

Mark P.

[Smartie]

As little victories go, this is a pretty big one! Congratulations!

[Gerri]

Wow, that's a HUGE drop! Congratulations!

I totally believe in celebrating each small victory along the way! : ) Here's to a fab weekend!

[shesnoangel]

A moment of weakness. I've been really good, but tonight I find myself in tears. Almost crying for the sake of crying. Why is this wet stuff coming out of my eyes?

A part of me has such a hard time seeing him go through the rigours of chemo and not being able to help more than I am. What I would give if I could just shoulder some of this pain, nausea, boredom. Then the other part of me hates leaving him there at night. Crawling into bed alone is well, lonely.

Then there's the laundry, the cleaning, the groceries, the job, the bills, the money, the stress, the agony, the staying positive. Some days it's just so overwhelming. I've been looking at myself in the mirror these days and not seeing the same person that was there five months ago. I look old, I look tired...and it seems no matter how hard I try I can't fix it.

I get mad when I see happy couples doing normal things. I HATE seeing pregnant women. I dislike seeing people obliviously living their lives normally. DO THEY KNOW?! I want to shake them and tell them to appreciate every fleeting worry-free moment. If only they knew the things that we as caregivers have to worry about.

The road is long and hard, ups and downs. I guess today has just been a hard day. But I have to step back from it all and realize that I have a lot to be thankful for.

- I am with the love of my life, the one who takes my breath away. I am so blessed to feel a love this strong.
- Tumor markers plummeted down, lung mets are shrinking. We're on the right path!
- Nathan's parents, my parents and some close friends are visiting soon.
- Christmas is almost here, and despite the fact that it'll be at the hospital, we will make the best of it.
- 2010 is going to be a good year. Mark my words, I will make it my ***** and things will go our way.

Anyways, I needed to rant and get it off my chest.

[starjayroman]

Angel,
They don't know. I didn't know before it happened to us. You won't be alone in spending Christmas in the hospital. I will be there too with my Jay, in another hospital. I remember when he was in the hospital the last three times. My mommy watching my son for me, so I could go to work. Jay wanting me to stay at the hospital but he and our son would never get any sleep if I did. The sleepless nights, constant worry. The anger about others being able to have babies. I understand how you feel. The mundane things in life must go on, the laundry, the dishes, the job, the schoolwork, etc. While are lives seem to have fallen down around us. There were times I just yelled in my car. It is difficult to be positive all the time. My Jay told me that he needs me to be happy even when he is being an a**hole. Its hard. Still, hope. The most important thing, that our loved one live. That we keep on fighting and don't let the bi*** get us. It has already taken too much from us and others like us. Taken too many precious loved ones. I am sending you hugs via the virtual world, its not much, but its all I can do.
You are in my prayers.

[shesnoangel]

So, an update on Nathan!

He finished his second round of TIP, and we started Neopogen shots. His recovery is a little bit slower this time, but already he's out and about being active, which I can't say ever really happened during the BEP cycles.

Anyways, they were still on the fence about what to do next, mostly because of scheduling issues. I guess the HDC/stem cell ward in Vancouver is a busy place! Unfortunately they couldn't get him in fast enough to start his high dose chemo this month, so in order to keep the ball rolling (in this case, cancer shriveling to it's death), they're going to give him another round of TIP before starting a tandem high dose chemo treatment early January. So far it looks like they'll start his stem cell harvest on Dec 30-31. On the upside of things, this means that Nathan will be home for Christmas and most likely feeling pretty lively as he'll have enough time to recover from the third round of TIP.

Otherwise, everyday I see little improvements and I think he does too. Finally he's been able to lay on his side and flat. Before he would have to sit upright and on his back because the mets in his lungs were bothersome for his breathing. And his energy level has been more than I've seen in months, all considering how chemo knocks you down. All in all things have been pretty good.

Hoping that you all are starting to enjoy the holiday season!

[Kat]

Going back a few posts to something that Mark said about living in the moment. I've found that it has become rather easy to live in the moment, because you all of a sudden appreciate that it's what you have. One of the best---and hardest---realizations that I had along this dumb path was that, one day, I woke up---and I couldn't remember what "normal" felt like. It was gone. I couldn't remember waking up and just thinking about breakfast or work or where I had to travel that day---those things were just all gone. And once I forgot what "normal" was, I didn't miss it anymore. Because, wow, I really struggled with seeing "normal" people just going about their day---and absolutely a GIANT ditto on seeing pregnant women. There was just something about that that struck a giant stick in my heart. Perhaps because we may not be able to have children, and perhaps because it is such a frackin' NORMAL thing----a NORMAL life process. There is something undeniably abnormal about cancer in your twenties, and I can't even imagine younger. But, yeah, letting go of normal was sad....like a grieving process.....but then I didn't miss it anymore. So, on to the "new normal" as people on here call it! Here we all go!
Best wishes, and I'm glad you'll get to have Nathan home at Christmas. That will feel ...
N O R M A L I S H.....for you! Especially going to the grocery store. :-)
--Kat

[shesnoangel]

After a full day or more of bated breath (on my behalf) we found out the results from Nathan's second round of TIP. His tumor markers are now down to 110!! Which is lower than it's ever been. SO ELATED!

He's now in-patient for his third round of TIP, which I'm sure will see that number go down even lower.

Anywho, just wanted to share the news.

[Smartie]

Wow! That is just the best news. Huge congratulations!!

[Arwen]

How do you cope? Difficult one, but let's say that I would have done things differently. My husband is hitting the 3 year remission in a few weeks.

The cancer affected the whole family. I was so busy taking care of him,I made no time for me. I refused to talk to him about it, because I was thinking that he had his own demons to deal with.People offered help, and I was too proud to take it.All he got was sick pay, and I rushed about holding down a job,taking him to appts and hospital,coping with 3 kids and I was exhausted.I still refused these offers of help.I got to the point I got resentful, because everyone was asking how he was, and no one asked about me.Actually they did, I just didn't listen.

So what happened? Well he went into remission and he was fine, and 9 months later,I sunk into depression.Seriously bad. I am not normally a depressive person, so I took it real bad.

3 moths later,after anti-D's, I was fine.My problem was I bottled up my feelings. I was so busy coping, I shut off everything.I was going through the grief and loss stages.

My Dh is pretty well ,except he has Peripheral Neuropathy.He is training in Mental Health and wants to do a Palliative care degree. I work part time as a support worker, and assist terminal cancer patients. I now recognise that carers need as much support as the patient.

You need someone to talk to,time out for you eg getting hair, nails done,day shopping,someone just to listen, shut off time,whatever it takes.

Phone helplines,bore sympathetic friends, and do NOT be afraid to ask for help.You can't do this alone.

[Paul54]

Originally Posted by shesnoangel

After a full day or more of bated breath (on my behalf) we found out the results from Nathan's second round of TIP. His tumor markers are now down to 110!! Which is lower than it's ever been. SO ELATED!

He's now in-patient for his third round of TIP, which I'm sure will see that number go down even lower.

Anywho, just wanted to share the news.

Angel,
That's awesome news! Thanks for sharing. Before you know it, you'll be posting in the All Clear forum. Keep us informed. We're keeping you in our thoughts and prayers.

[shesnoangel]

So Nathan finished his third round of TIP. Obviously after a third dose I didn't expect that he'd bounce back as easily. He has been a lot more tired and lethargic this time.

Well after a barrage of tests yesterday, his oncologist called early this morning to let us know that his hemoglobin is really low. Which would explain the tiredness and dizzy spells when he'd get up. So this afternoon he's going in for a blood transfusion. Hopefully this should help. We're equipped with snacks, movies and each other.

If anyone has gotten a transfusion, how quickly did you notice a difference in energy level?

[dadmo]

Originally Posted by shesnoangel

We're equipped with.......each other.

Perfect

Originally Posted by shesnoangel

how quickly did you notice a difference in energy level?

From what others have post he'll notice a change within a few hours.

[cjjones]

I am just now reading your post and sorry you are going through this with your BF. Sounds like his numbers are getting smaller - great news! Stay strong, I know it is hard sometimes but keep believing. This support forum is a perfect place to say what you are feeling, we all understand the emotional rollercoaster. It is very scary!
I really hope you and your BF have a wonderful Christmas.

[shesnoangel]

Well it's been a long couple weeks. I didn't realize just HOW much is involved in getting high dose chemo started. I took two weeks off of work to help Nathan through all of the doctors appointments, and to relax over the holidays. But let me tell you there hasn't been much rest.

On Monday of last week, we had a marathon of appointments. Blood tests, x-rays, CT scan, dental exam, RVG of his heart. Then after all of that on Tuesday morning we thought we'd be able to sleep in, but his oncologist called and said that his hemoglobin was really low. So alas, off we go for a day of blood testing and a transfusion. We thought we had Wednesday off, but alas...no such luck. His hematologist called and said that his magnesium was low. So off we went to the hospital again for a magnesium drip. Then finally on Thursday (Christmas Eve), we thought we only had one test left...a pulmonary function test, but on the way down to my car in the parkade, poor Nathan boy got sick so we had to postpone that.

We had a good couple of days off and then started the GCSF shots on Saturday. Then on Wednesday went in to start the collection. Unfortunately Nathan's veins are completely tapped out, so to speak...and they thought they had a good connection, but after the machine failing a couple times, they decided it was time for a St. Paul's catheter. So after that, they called it a day. But despite the low collection amount, the amount of stem cells was enough for one transplant.

So we went back today, and did a good 4-5 hours on the machine and got his port taken out. Found out that he collected enough stem cells for 4 transplants. Better to have more than not enough. As well we found out that his tumor markers have gone down to 100. Not as much of a drop as before, but still going down and that's all that matters.

Anyways, we're going to watch movies and eat Chinese food for our New Years celebration, just the two of us. I'm sure Nathan will fall asleep before the countdown, but he's said it's okay that I wake him up to get a kiss.

I really hope the rest of you make the most of your new years. I meditate/pray/think of you guys all the time and wish health and happiness for 2010. We all deserve it.

[Smartie]

Hi guys,

I hope you enjoy your new year celebration. I am so glad to hear that Nathan's markers continue to fall.
It's been quite a marathon for you already. Hopefully you're all set now for the treatment and the cure. Every good wish.

[shesnoangel]

Hey guys!

So Nathan has finished chemo for his first round of high dose chemo. When his oncologist said it would be "stormy", I really had no idea what to expect. I would now say, after being through the past week that stormy is the right description.

As well I'm not sure why I was shocked when I saw the amount of chemo that was being given. I guess I thought it would be strength and not quantity. Seeing two bags of etoposide drip at the same time for 34 hours, well that's heavy.

Other than that, Nathan has had a rough time with the nausea. They've basically had him on every anti-emetic they can get their hands on. Which resulted in having him on Ativan, Gravol, Benadryl and Nabilone around the clock for most of the chemo regimen. So he slept through most of the five days, which I guess isn't such a bad thing. But after a bad trip with some Chlorpromazine (for hiccups) yesterday, it was clear to me that we should start getting him off of the drowsy meds. They managed to get him on some Emend, which so far has been working great. First full day off chemo (today), and so far nausea isn't that bad. I think he's mostly just tired and weak and taking lots of naps, which is to be expected.

Tomorrow is the stem cell transplant, which we're excited about. I've bought him some oranges to snack on to help with the weird taste/smell that I've been told happens during the transplant. I wish I didn't have to work because I just want to sit and hang out with him.

I've learned most of all during this process, that I have to be patient. He's not going to bounce back as quickly as he did with normal chemo...but slowly but surely I'll have my regular happy boyfriend back.

Hoping the next few weeks go a bit more smoothly...and practicing my mantra "Remission, remission, remission."

[Gerri]

Hi Nicole

Glad to hear that Nathan is done with the chemo for his first round of HDC. Colin, my husband is also undergoing HDC right now. We had our first round of high dose chemo late last week and had our stem cell transplant yesterday. He's currently smelling like creamed sweet corn!

Just like Nathan, Colin had issues with nausea especially the first two days after the chemo. He was on Metoclopramide (Maxalon), Lorazepam (Ativan) and Kytril (Granisetron). He seems to be doing better today with fewer complaints of nausea.

Its getting pretty boring/tedious. I talk to everyone comes into our isolation room for at least 5 minutes! I am not a patient person so all this waiting for counts to drop and then increase is rather tedious for me. You'd think that after 9 months, I would have had enough practice being patient!

Good luck with the high dose chemotherapy treatment!

[Kurt]

Dear Nicole and Nathan.

I will also keep saying "remission, remission, remission" for the both of you through this battle.

My wife and I are thinking of you.

Kurt

[shesnoangel]

Well it's been a difficult couple of days.

Nathan started to present a cough that was productive. When he spit it out, it was bloody phlegm. Long story short, they had to bring him down to ICU last night and intubate him and put him on a breathing machine.

Saw the doctor today and he said it's one of two things. It's either a pulmonary hemorrhage or some type of lung infection. They were going to do a bronchial scope tonight and see what they find and do some tests to narrow it down. That way they can figure out which course of treatment to get him on.

I'm starting to lose strength and had some family keep me company at the hospital. My mom is also flying down tomorrow to stay until we're over this hurdle.

I knew it would be hard, but not this hard. I love this man too much, and seeing him go through this just seems so unfair. I need a patience and positivity pill because I feel like I'm running low. My throat is dry, my eyes are tired from crying and I just need him to get better.

[dadmo]

Nicole you are indeed an angel. I know how hard it is right now but you're so close now, so close. It will all be better very soon.

[Gerri]

Hi Nicole

I hope the doctors figure out what is going on with Nathan! As you have said, "remission, remission, remission"! Don't let this discourage you! He's almost done with treatment. Soon you will have the regular Nathan back! Focus on that! That's where you will be in a couple of weeks!

Gerri

[ally30736]

Thinking about you and hope that everyone has a better day today.

Ally

[shesnoangel]

Well it's been a while since I updated, and I could probably write a novel but I'll try to keep it short.

Nathan is still in ICU, intubated on a breathing machine. They've concluded that he has pneumonia in his right lung. The doctors are quite confident that this is treatable and things are going the right way. It's just those pesky white blood cells we're waiting for so his body can start helping in the healing process. Fortunately for Nathan, he's a machine when it comes to that and his white blood cell counts started to rise up on day 7 after his transplant. We've just been told it's a bit of a slow process getting this fluid out of his lung. This whole process has been two steps forward, one step back...continuously.

In other news, last Sunday night I went to visit Nathan in the evening as I usually do. He asked for his clipboard and large jiffy marker (as he can't speak with the breathing tube). He started writing something, but told me not to look. I finally got to look and it said "When this is all over, I'm going to marry you." I asked him "Is this my official proposal?" and he nodded, so of course I said yes. Then he asked me what kind of ring I want and if Mexico sounded like a good honeymoon. I've told my parents and a few other people, but haven't told his parents. I want to wait until they're here in person and possibly Nathan can tell them himself.

I guess some good news despite all of this bad situation. I CANNOT wait for him to get the breathing tube out so I can give him a big kiss and hear his voice again. Ugh, can't start crying now. This whole thing has just been so exhausting and I can't wait for life to be "normal" again.

[dadmo]

Nicole:
Let me be the first of your forum family to congratulate both you and Nathan. You're going to have a very special relationship. His treatments will be done soon and you'll be able to start living your new lives together, forever. Congratulations.

[shesnoangel]

I just keep reminding myself that despite this complication it doesn't interfere with the effectiveness of the high dose chemotherapy.

"Remission, remission, remission"

[Smartie]

Congratulations on your engagement! Wonderful news. I hope his parents don't look at the forum and spoil the surprise!

[Gerri]

Hi Nicole

That's such wonderful news! Congratulations on the engagement! Its fantastic to hear too that the pneumonia will just be a hiccup on the road to recovery! Well done, Nathan!

[Kat]

So I guess you couldn't resist the urge? ;-)
Best wishes for this weekend! I hope to hear that he's off that darn machine and chatting away by Monday!!!

[ally30736]

Nicole,

Congratulations! What a great story you two will have to tell your kids someday. So happy for both of you.

Ally

[starjayroman]

Yeahhhhh!!! Happy dance for both of you!!!

[loveumms]

Congratulations. Hopefully your fiance is getting of the ventilator.

Reading your story, I'm inspired by your strength and courage.

[mil]

congratulations that is such a beautiful proposal story, for what i'm sure is a really beautiful relationship. sending lots of love your way, and courage and hope - you guys are almost done! what a great moment that must have been

[shesnoangel]

I find myself feeling so low today. The past two xrays had come back with improvement for Nathan. This morning they said there was no change, and overnight he had problems with his blood oxygen, so they had to up the oxygen on the respirator to 70%. They've done bronchial scopes and found little to no fluid, so this "cloudiness" in his right lung is in the tissue. They've decided to continue to keep him sedated.

I feel so helpless just sitting and waiting. I HATE waiting and not knowing. And most of all, I hate that Nathan is still in ICU. I want him to get better and come home in the worst way. How much longer do we have to deal with this? When is he going to get better?

Ugh!

[Smartie]

We're by your side, Nicole.

[loveumms]

Hey Nicole, you are in my thoughts. Hang in there, being in the ICU is tough but he will be out before you know it.

[mikes mom]

Nicole,

Just reading about you and Nathan brings tears to my eyes. You will both be in my thoughts and prayers and I will be waiting for the next update. Stay Strong!

Debbie

[shesnoangel]

Oh where to start...

The past couple of xrays for Nathan have come back with improvement. They've decided to keep him sedated for a couple more days and see how he does. If he needs to be on the ventilator any longer they've said they'll do a tracheotomy. Hopefully it won't come to that. The BMT doctor seemed positive that this would be resolved though. Now that Nathan finally has a white blood cell count coupled with the steroids he's on, he's back on track.

But the one thing the doctor mentioned was that another round of high dose chemo could prove to be fatal. As of now, it sounds like they're thinking another HDC is not going to be an option. I understand the reasoning why...but now I'm left a bit confused/in limbo. Can Nathan get remission after only one round of high dose chemo? If he doesn't get a CR from this, what are our options?

Ugh, left with more questions and waiting...

[loveumms]

Stay strong. If he needs a trach, they are totally reversible. How long has he been on the vent in total? Just keep telling yourself you are going to get through this.

[Gerri]

Nicole

Its great news that Nathan's back on the recovery track! Has the doctor gotten back to you on next steps? Perhaps the doctors will reconsider and continue with the next cycle when Nathan's better? Keep us posted!

We're here for you and Nathan! Remission, remission, remission!

Gerri

[starjayroman]

Nicole,
I am sorry that you both are going through all this. I am praying remission, remission, remission too.

[Karen]

Nicole,
I hope the past days have brought more improvement for Nathan. You are an amazing caregiver, and definately an angel.
Hugs,
Karen

[Aegean]

Nicole,

Is Dr. Kollmannsberger involved and have you emailed Dr. E. about the HDC? Yeah, I know it's a routine post and it sucks, but Dr. K is the TC Guru in Vancouver.

I can also tell you that Dr. Warde and Dr. Jewett at PMH are extremely quick at answering. Both of them are fantastic resources too along with Mary K Gospodarowicz and Peter Chung. (all at PMH)... These are the best TC authorities in Canada. (Oh, and I'll throw in Jeremy Sturgeon, my onc, as he used to be part of the team at PMH and great friends with them all still... just in case he reads this )

[shesnoangel]

Things are not good. At the hospital and had a family meeting with the doctor. Nathan is walking on thin ice right now. He's fully sedated and on a more intense respirator. They think he's had a relapse with pneumonia or he aspirated.

I feel lost and scared. We'll know in 12-24 hours if he can pull out of this or not.