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Oct 2, 2016 · Primary liver cancer in Cancer

Hi Tess,
My husband had his 1st procedure the end of June, 2nd radiation mid august. My husband had the EXACT same side effects- flu symptoms with temps reaching as high as 104, sleeping alllllll the time, completely lost his appetite and tons of weight, and “pressure” (I’m guessing he downplayed that but it was pain cause he kept saying “ow”) in his side. So as far as side effects they were identical and they said they were related to sir-spheres.

That being said, there was another reason, PLEASE take this with a grain of salt because I don’t mean to scare you, everyone’s cancer is different and my husbands is EXTREMELY fast growing and aggressive- also the goal wasn’t resection because that’s not possible for him- the goal for him is life extension. Is your husband doing this in conjunction with chemo? They stopped my husbands for 4 months while going through this due to neuropathy. They wouldn’t do CT’s during that timeframe because they said they won’t be accurate due to the radiation. Well… 3 weeks ago we rushed to the ER due to SEVERE stabbing pain in his side. Turns out the tumors had grown so huge they were pushing on all his organs. Surprise surprise… they WERE able to tell it grew that big and only a little was inflammation. My husband had been saying all along that he thought it was growing but they always chalked it up to radiation side effects. If we had pushed them to do a CT earlier we may not be in the situation we’re in now…if this chemo he just started doesn’t work then his body won’t be able to handle trying anything else- a few nurses that are not associated with his hospital told me it’s already over.

So again, I do NOT mean to scare you. Docs (who were amazing… some of the top in the country) have said since the beginning his is one of the most aggressive cancers they’ve ever seen (tumor in liver 21cm at its biggest… doubled in size within 2 months). So please don’t think this will happen to your husband. I’m just telling you our story because if he’s not on chemo and he feels like something is “off” don’t be afraid to push for a CT!! The side effects of sir-spheres apparently mimic growth.

Sep 15, 2016 · The Caregivers' Guilt Dumpster - Open for business in Caregivers

Guilt dump! I’ve been frustrated lately since my husband was so down and out and not helping himself. I will do anything for him but for the first time in a while seeing him able, or what seemed like able, to help and he wasn’t. And by help I mean chores such as: hose down patio, empty dishwasher, etc…easy things. So guilt 1: not just letting it go and let him sulk on the couch all day because he certainly deserves to. And also guilt because it was more my stubborness about the principal, not the actual chores. And my worry about his emotional stability also important.

Guilt 2: even though he seemed somewhat ok he wasn’t. All the tumors had grown so big that if this chemo treatment doesn’t work (started today and I’m sitting in the room now)then… I can’t even finish this sentence because it’s too freaking hard to fathom. SO guilt 2: he’s been worse than ever and I’m annoyed that he’s not helping around the house!!!! AHHH!!!! What was I thinking?!?!

Guilt 3: 9 months and 6 days ago we were planning a huge wedding on a boat, with an awesome band, 200+ people, I had purchased my beautiful gown,etc. We cancelled when he was diagnosed with cancer and we got married in our living room with a few friends in March and it was perfect. other than not being able to wear my gorgeous ball gown haha, I’ve never regretted our decision to cancel it nor have I been sad about cancelling it. Well… That big wedding was supposed to be tomorrow. And I feel INCREDIBLY guilty because for some reason I’m thinking about that… and I’m a little disappointed…. And we are in an extremely scary situation now and I’m facing losing him yet I’m thinking about a cancelled party!? What!!?? Guilt. Ugh.

Venting about guilt complete 🙂 Good idea @IndianaScott !!!

Sep 14, 2016 · Have you had TACE or SirSpheres radiation treatment? Please share in Colorectal Cancer

Hi, my husband had his SIRT on June 28 and August 10. Interventional radiology did a baseline CT before the first procedure and the next IR ordered CT isn’t until November 10. They said there can be a lot of inflammation and won’t get an accurate CT result until November because of that. Maybe that helps answer your question?

Aug 29, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hi Linda, thank you so much for the kind words and advice. I will try that when he’s done with work in a few hours (works remotely, SAYS he’ll go on disability Oct 1 but we shall see). Fingers crossed!!!

As far as your sister, if she ever needs someone to talk to that has been through the rough times and got through it then please feel free to private message me. Or if you’d like to talk offline about it please feel free to contact me.

I was diagnosed bipolar when I was 19 and was in the meds “guinnea pig” stage until I was 28 and it was HARD! Beyond hard. She put it so so well when she explained it! The way I try to explain how it feels, and people have said they understand more when I say this, is that I would see everyone around me who were “normal” and I just wouldn’t understand how they handled situations better than I did, how they dealt with things so well without being SO sad. Even simple things that then seemed huge to me. I didn’t understand “normal” until my meds started working consistently at 28. Mania was different. I never thought or cared about what the outside world saw when i was manic – racing thoughts led to talking about ridiculous things, acting with no thought of consequences, etc. I would struggle with taking meds when I was in a manic phase because I felt great. Like I could do anything (delusions of grandeur is also a manic trait as you probably know).

Saying things happen for a reason is SO cliche yet I think the only reason I’m able to be strong for my husband is because I got through something impossible and came out of that hole, which i never thought I would. My life was happy for a little while before another impossible situation was thrown at me. I told my husband once that maybe he has cancer because he was dragged into my bad luck with life. Rationally I know that’s ridiculous and actually pretty self absorbed but I feel like someone up there just wants to see how hard they can push until I break. I’m terrified of the day that I lose him and hoping it will be MUCH longer than the prognosis but that may be the breaking point. I’ve started therapy to start dealing with that now (I haven’t been to therapy since I became stable… just meds). Has your sister ever reached the point of stability or is she still trying different meds? I’m so sorry she is going through this and I’m so sorry you are too. I know how much of an effect my emotions had on my family and it breaks my heart that I put them through it for so many years. She is so lucky to have you. And it helps more than you could ever know. There were many times I was on the verge of suicide and the only reason I didn’t do it was the thought of what it would do to my family. I am alive because of their love and support. I know my husband was able to stay positive for 6 months because of the love and support of his friends and family. Hopefully he’ll get through this depression and that support will motivate him to fight again. I’ll let you know how the walk goes. Thank you so much again!!!

Aug 29, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hi all, I’m so sorry to hear about all of your stories and hope you are all doing well. 1 thing about me is I tend to ramble and write long messages so sorry about that! If anyone has any ideas on how to pull patients out of depression I’d REALLY appreciate it (3rd paragraph)

***My Story***My husband and I are 36. In January ’16 he was diagnosed with stage IV colorectal cancer which has metastasized to his lungs and badly to his liver (tumor the size of a football). He went from never having any health issues that we knew of (the cancer was actually there for 4 years) to a prognosis of 3 years (which we are optimistic will be longer). We were engaged in May ’15, planning a big wedding for next month, I just got a new job, we just bought a house, planning on starting a family a year or so after marriage (next summer), things were the best they’ve ever been. The day I quit my job late Dec ’15 (the only negative thing hanging over our heads) he found the bump on his side which led to hospital and diagnosis. Went from our lives as close to perfect as they could be to cancelling the big wedding (got married in our living room in March w/4 friends, it was perfect), I’ve since lost that new job, found out we can’t have kids (cancer had already ruined his body) and worst of all the realization that after FINALLY finding my soul mate and best friend I’m going to lose him.

***Treatment*** The past 8 months have been surgery to remove half his colon, chemo (it REALLY helped but the agents should have lasted for 10 months but only lasted 2 due to neuropathy) and targeted radiation to his liver. Thursday we’re finding out what the next treatment will be – some clinical trials are being considered. The normal treatments have been put on hold due to the sir spheres (targeted radiation) surgeries. He’s been extremely anxious over the past few months waiting to find out what’s next. All treatment goals are to extend his life, the cancer has spread too much to eradicate it and he’s not eligible for a liver transplant.

***This is where I could use some HELP***He’s fallen into depression which I completely understand, it took SIX months for him to stop being 100% positive. But from positivity to depression has taken a bad toll on us both. He’s never been depressed and doesn’t know the signs so he’s blaming the symptoms on his hemoglobin level and needing another blood transfusion… yet he refuses to go to the doc before his apt. He’s sitting in our dark finished basement on the couch watching TV 24/7… literally… barely comes to sleep in our bed upstairs anymore. I don’t know what to do. He’s tired, body can barely handle a short walk now (he doesn’t relate this AT ALL to not moving and sitting on the couch for 2 months!!), went from so positive to SO negative, irritable, not wanting to go out to do anything or see anyone, not responding to calls and texts from friends, barely any appetite, etc etc. I’ve tried to schedule short 1-2 block walks and yesterday he FINALLY agreed to go in the evening. when i went down to get him he pretended to be asleep. I know he was pretending because he wakes up so easily just when I walk in the room and i said his name a few times and he still didn’t wake. Doc mentioned antidepressants 2 months ago and he says he’s open to that but I don’t know if he’ll actually take them. Funny thing is I’m bipolar and although I’ve been stable for about 8 years, throughout our entire 5 year relationship, he knows the stories of my struggles prior to being stable. Yet he still doesn’t take my word for it when I tell him the signs of depression. It’s frustrating. Anyone have any suggestions? @IndianaScott gave fantastic advice about letting him feel what he’s feeling which I have and its helped a great deal! But its really starting to effect his body and he won’t handle the next treatment as well if he’s weak and not eating much.

As I warned… I ramble sorry! Can’t seem to help the long emails even when I try. Before this depression I’ve had the experience that many of you have that ironically our relationship has never been better. Its the shining light through this nightmare. No longer do we take each other for granted or time for granted. Those little things that used to upset me SO much (like my job not going well) just seem ridiculous now. No more daily grind and no more living/planning for the future and not appreciating the present. Priorities have changed.

Hugs to you all!
Beth

Aug 29, 2016 · Meet fellow Caregivers - Introduce yourself in Caregivers

Hi Lisa, my husband is battling stage IV colorectal cancer with metastasis to his liver and lungs. The liver tumor was so huge that it pressed on his stomach and he had to be on a liquid diet for a while because he just couldn’t handle solid food. During that time I ‘enhanced’ many soup and smoothie recipes to make them about 1000 calories each. Haha. So if your husband starts losing weight and you want the recipes please let me know, I’m happy to share.

Aug 19, 2016 · Have you had TACE or SirSpheres radiation treatment? Please share in Colorectal Cancer

It never even crossed my mind that it wouldn’t be cancer related! Ha. He doesn’t drink a crazy amount of caffeine in the first place (I do) so I didn’t think about that. Headaches could mean very scary things though so that was a relief… and of course he had a little caffeine and it went away. Sigh. I’ll let you know how it goes… when he starts talking to me again :/ Has just been VERY VERY tired since the procedure but he’s looking a little better the last few days 🙂

Aug 19, 2016 · All new too Liver and pancreatic Cancer in Caregivers

Good! Have your friends spread the word? Chris’s page that my brothers and his best friend created was spread all over social media by everyone we know. His dad has a ton of contacts in his town but spread it through work contacts and everything. Raised a LOT of $. Then his brother held a benefit for colorectal cancer awareness in Chris’s honor which raised $12k. We gave it to the hospital though because the crowd was all the same people that donated to the crowd rise (like go fund me) fund so we felt bad taking that $ too :/ Oh… crowd rise takes less off the top than go fund me. and i think there is an even better one than that so you may want to look into it. Chris’s crowdrise took like $3k+ and I feel like that’s a LOT and I think go fund me takes double.