The Colon Club

Hi,
First I want to say that I read everyone's posts and I wish I could reply to each one of them with the post still in front of me. I know I don't have chemo brain but I sure can't remember things very well. I mean to mention all the posts above but then I hit submit and "dah" I forgot something. That said, I better get writing or I will forget everything.

Kathy - I have been thinking about you and Blake. I'm glad you joined in. Anything new with the HIPEC? I really hate insurance companies at times. Mean people I say, without hearts, just numbers jumping around in their heads.

Michhy - We're not in LA but we are here. We can offer you support and just and ear. I'm glad you found us.

Tiff and Anji and Elissa, I believe all your husbands are doing chemo this week. I've got you in my prayers. I hope you can have some quiet time just sitting together with your loved one. (I apologize for missing folks, I think I need to take notes.)

Keeping all of you in my thoughts and prayers.

Aloha,
Kathleen

Kathleen/Elissa,

No resolution from the insurance company - yet. We've given notice of our final appeal. This written appeal will be reviewed by an Independent Review Organization (IRO). I would like to be hopeful but let's be real here.... Who pays these IRO's? The insurance companies do! If they issued determinations that were positive for patients - they wouldn't get any business and would be.... out of business! I'm trying to not be cynical and hope these people do what is right. Doctors should make decisions for their patients; NOT insurance companies! We've been fighting since September for this.... it's just not right.

Surgery IS scheduled for 3/25 at UCSD (same Doc as Ashlee). At a minimum, he'll have the CRS portion without HIPEC. We're pushing hard for HIPEC even if we have to private-pay for it. Both Docs (here and in San Diego) agree that Blake would benefit from CRS even if he doesn't get HIPEC. UCSD has submitted for CRS (only) approval and we're having a hard time even getting that! WE WILL NOT GIVE UP. If we get denied again, we can file suit.

Chemo again next week. It's amazing - he's had 31 treatments and never has had to get skip a treatment or any booster shots! I think I'm married to Superman! This probably sounds like I'm bragging - and maybe I am - but, I'm so proud to be his wife! I'm sure you guys feel like that too! I watch him endure all kinds of horrible stuff & these love bubbles just start pouring out of me!

TTFN!

I too have a hard time keeping up and may have to start "taking notes"....

Kathy, I will pray for the insurance company to do the right thing. I can't believe you've been fighting for so long....sigh. It's sad.... Superman, huh? That's amazing! Larry never had to delay treatment either, but he did have the help of Neulasta. This round, with Folfox, he put his foot down and said no more Neulasta. He doesn't care if it's a month in between rounds, he's not enduring the Neulasta pain anymore....and his counts have been higher than when he DID the Neulasta! Go figure... I realize it could be the difference between Ironetecan and Oxi, but....I find it kind of funny....and the doc just scratches his head and says "huh"...that's...interesting....

Tiffany, know that I am praying for you guys. Your story touched me. I hate this disease. More than I thought it was possible for me to hate anything....I just hate what it does to everyone involved. Larry's cancer doesn't just affect him...it has the ripple effect....like a stone on water....and the circles reach out and touch a LOT of people... family, friends, coworkers, church family.....cancer affects us all. And I hate it....

Kathleen, how is Dick doing this week? It's chemo week for him too, right? How are your girls?

Larry is doing really, really well. Last round was a nightmare. An absolute train wreck of a nightmare....and after talking to the doctor, he decided to decrease Larry's Oxi dosage. I'm not certain how it's "figured" but he went from 85 whatever the measurement is per whatever, to 70. That sounds like a big decrease to me, but.... he also cut out the Ativan that Larry got before infusion. And Larry is a different man. Today is day 4, after being disconnected last night. And he got up, showered, ate, and went to work. And I think he's going to make it all day! Last round, Larry didn't return to work until day 10, and then it was questionable about whether he should have... thank you God!! My prayers have been asnwered....this is very "doable" for Larry, me, the kids, and everyone else. THIS is what I've been hearing and reading about.... people who work while on chemo, play, live their life...THIS is what I wante for Larry!

Today is another snow day for the kids. We are SO tired of winter weather....and the spring is going to be glorious, if it ever gets here. I'm off to cook a big breakfast and then we're going to bake.....something.....today!

Anji

I forgot to say a big welcome to Micchy! We're sorry you're here, but so glad you found us. And you will find a ton of support, advice and friendship here. It IS hard when you feel so alone....and very, very few people in my "real" life can even come close to "getting it"....

Elissa, how is John this week? Chemo treating him well? Thinking of you guys and praying for you every day!

Anji

I'm thinking about all you in chemo week this week - and wishing we were in it with you as we were SUPPOSED to be! Today was supposed to be chemo day but denied! WBC so low! i'm so discouraged. Seems like NOTHING goes our way. Our onc walked into the room and said "you have the worst luck, don't you?"...at least she followed it up with this "Well, we're going to change that!"

Chris was dx'd in late Novemeber...so nearly 3 months...and so far only 3 chemo treatments. His comment back to the onc broke my heart. He said "Yes, I feel like I'm in a race for my life and all I am allowed to do is sit in the pit waiting to get into the race." He'd had the 2 txs in December, and then had to take 30 days for his heart to recover after the cardiac arrest. We were so anxious to get re-started with chemo on the next regimen - which he took 2 weeks ago - and were floored that just that one treatment brought his neutrophils down to .47! YIKES! No wonder he's been feeling crappy and the cut on his hand he got a week ago isn't healing!!!

So, here we wait another week hoping his WBC's behave themselves. We'll try again next Thursday...and then they'll give him a Neulasta shot. Knowing our luck, he'll suffer some horrible side effect from it too! Grrrrr.....

Sorry - trying to stay positive here...I'm a firm believer in positive energy, but I guess I just need a few hours to have a pity party I'll be better after I get home and can do some meditation!!

Do you guys have much experience with this and Neulasta? Just wondering what I can expect, or should be on alert for?

Julia

Yikes Julia....sorry Chris is having such a tough time. That just stinks. Being all geared up for the tx and then nothing. I hope that his WBC make a quick and full recovery before next week. John has been on Neulasta shots from the get-go. His onc is very proactive and did not want to take a chance that he would have issues with his blood counts or with infection. He did not want to ever have to delay tx, and for that I am very grateful. John has had very, very minimal issues with the Neulasta....just a little achiness about five days after the shot. I hope that the same will be true for Chris.

Anji....so glad that Larry is feeling better this round. I guess the decrease was what he needed. John is actually really wiped out this time. He was in bed today until 12:30. He just ate, and seems a little better. He is on round 8 and I think the fatigue gets a little worse each time. So glad that we will have an extra week off for vacation. I think that might help how he feels for round 9.

Hope the rest of you, and your hubbies, are doing well.
Elissa

Thanks Elissa. I'm surprised they put John on Neulasta prophylactically. Our onc told us today that because it stimulates cell growth, there is some concern that it could stimulate cancer cell growth - but I got the impression that the jury is out on that still. I'm glad it's working well for you guys. As a result of this unknown, our onc will only go with it if you end up needing it. It's amazing the differences in philosphies and approaches, isn't it? And it creates more stuff for me to research! Seems like I go home from work every night with something new I want to research!

Julia

Heading to MSK 2mro for round 11...next scan is Tuesday the 15th. Amazing how there are days, and today being one of them that I can literally feel myself feel lower and lower mentally that I have to talk myself out of feeling so blue. Hit me first thing this morning...work was a big distraction so I it kept things off my mind for a few hours. Hate that i can't help but have emotional, sucky days sometimes.

UGH! 2mro is a new day...NY here we come.

Julia,
Larry had the Neulasta after his second round of Folfiri. His counts were borderline when they gave the 2nd round, but we pushed on and started the Neulasta. He never missed a treatment due to low counts. However (isn't there always a however, or a great big BUT in there?!?!) Larry truly feels that the Neulasta was worse than the chemo. Three different rounds (out of 7) we ended up in the ER with uncontrollable pain. Chest pain, back pain, arm pain....once he was convinced he was having a heart attack....and every single time they would do a CBC and his WBC would be in 60-70 THOUSAND range....and all the docs would shake their heads and say...oh yeah, that's gonna hurt...your bone marrow is churning out so many cells....here's some Dilaudid. And they would knock him out with Dilaudid, I'd bring him home, and he'd lay in the bed for 3 or 4 days until the pain was manageable. So, for this round, he's opted to NOT take the Neulasta, ever. He doesn't care if the treatments are delayed.... he said he'd rather have another liver resection than go through that pain. So, onc agreed, and he's now had 2 rounds. And going into round 2 of Folfox, his WBC was higher than it had been for MONTHS....go figure.... just know that there can be some side effects to the Neulasta. I wondered about Neupogen, which is Neulasta spread over 4 or 5 days. Onc wasn't certain it would make a difference for Larry, and Larry refused it anyway....but it makes sense to me that if you spread the doseage out, perhaps the side effects would be milder? Perhaps that's on option for Chris....

Kathy, I'm thinking of you and Mike today. Continue on, friend. And check in and let us know how's he doing....

Larry went back to work yesterday, on day #4!! I was so proud of him. However, he worked 11 hours, came home wiped out, and got up this morning wishing he'd listened to me when I suggested he only work a "normal" day.... ; ) He did go in to work, but I'm looking for him home after lunch. He'll need a nap, for certain...maybe I'll join him!

Have a good weekend, everyone. We are celebrating our middle son's birthday. Which means McDonald's for lunch, chocolate cake, and lots of presents!! I'm looking forward to it.....

Anji

Julia....I think there are other shots that stimulate red blood cell growth, and those are the ones that they are worried about stimulating cancer cell growth. I can't remember the names.... i actually think that I have "chemo-brain by proxy".....I can't seem to remember that names of anything anymore. Or, maybe it's just stress. Either way, it's so darn annoying!

Kathy/NJ....sorry yesterday was so sucky for you. I totally feel you...I have those days too. Thinking of you today and hoping that round 11 goes well. Wow, only one more round to go until 12. Why are they doing the CT after 11 and not waiting until 12? Do the docs have a plan yet for what they will be doing for Mike after he finishes the 12 rounds?

Question for all you lovely ladies.....Do you ever just look at your husbands and see them looking and feeling well, and just feel so strongly in your heart that he is going to come through this okay? Sometimes I wonder if I am delusional, but he seems so okay, and I just can't imagine that he won't be okay. Do I sound crazy? I know we are newer to that than many of you. John was diagnosed in September, had one surgery and is done with 8 rounds of chemo. Maybe it's because I am still a newbie?! I just figure that every once and awhile there is a miracle, and why couldn't that miracle be my family. Just throwing this out there.

Wishing everyone a good day!!
Elissa

Elissa,
Oh my....YES!!! Before Larry started chemo again a few weeks back, he had been off chemo since July of last year. Liver resection in September. Recovery was brutal, but he did so well....

And he was strong, healthy, working full time, loving life....before this round of chemo started. And many, many times I would look at him, see his strength, see how "well" he was doing, and just KNOW in my heart that all was going to be well. Larry is going to be THE ONE who makes it....why not him, right? And then the dreaded scan results came in....and I went into a major depression, pity party for WEEKS....How in the world could this man, so physically strong, this man who just picked me up and swung me around the kitchen (and considering my stress pounds these days, that's no small feat!!) be growing cancer in his liver and lungs? How can cancer be there, when there are no physical, noticeable symptoms?!?!? It just doesn't make sense to me....and I can't wrap my heart and mind around the fact that the true story, the expected ending to Larry's cancer journey, is anything other than survival....I just can't. Even after 13 months, 3 days and 21 hours now....

Does it make me delusional? Not any more so than I've ever been, friend... It makes me a woman who loves her husband with every ounce of her being. I can't even let my mind "go there"....because if I do, I become paralyzed. I literally walk in circles, wondering....how....how will I survive without him? How will I care for these four precious children that God gifted to us? How?

And I don't have the energy, physically or emotionally, to wrestle with that question....so I don't.

Chocolate helps, too....

Sending love and hugs and prayers your way friend....

Anji

Anji - thanks for the info on how Neulasta affected Larry. I enter this phase with some trepidation because it seems like Chris is so senstitive to everything they do to him, and the last thing I want is a repeat of him lying on my living room floor with no beating heart! We'll see how it goes I guess and take it day by day. I appreciate so much you giving me the feedback so I can at least be on the lookout for it. Forewarned is forearmed...

Elissa - YES! So much so! My husband has always been the picture of health. he never gets colds or the flu and he's been a serious weightlifter for most of his adult life. So, when he's looking good, I sometimes have to remind myself that he's got this crap inside him that is threatening our happiness. I prefer those days to the days where it smacks you in the face and reminds you.

Yesterday after they told him no chemo this week is the first time I've seen him really down. After EVERYTHING he's been through, and it's low WBCs that got him down! Maybe it was the proverbial straw? This is a man who is never angry, we've never had a serious argument, he doesn't raise his voice or anything...until last night. My daughter did something stupid...she's 18...part of the deal with teenagers. She parked her car blocking the entrance to the garage for our older daughter (we have company...full garage). She made a smart-alec comment saying that she'll just have to park on the street. He got visibly upset, loudly hmphs as stormed off and went outside and moved her car without even giving us a chance to dialogue or giving her a chance to do it. Came back in...slammed his laptop shut and went into our bedroom. It was awful to watch. He's just NEVER like that. My daughter, of course, was very upset and mortified that she'd brought distress to him in the first place.

What do you do? How do you respond? Do you give him a pass because he has cancer, and is having a bad day...or do you still hold him to the high standards of mutual respect that we've deliberatly and carefully crafted in our family? I could see he was very irritable...do I blame it on all the drugs? it was just a totally YUK evening, and when you're in a place emotionally where you want to enjoy and savor every moment you have with him...how do you savor that?

Julia

Julia,
Could our hubby's be brothers?!?! Larry is the most laid back, calmest, most sensitive man that I have ever known. He has never once...EVER once raised his voice in anger to me. Once, in my younger, stupider days....I threw a block of ice at his head, in anger. Luckily, I missed and caught him in the chest.... he looked me right in the eye, and sent me to my room. No yelling. No threats. Just told me to go to my room. Yep, he treated me like one of the kids, but since I was ACTING like one of the kids.... And yes, I went. Straight to my room, locked the door, and didn't come out for a few hours....

Anyway, on Wednesday night he spoke very harshly to our youngest son. No provocation, either. Just snapped at him and sent him to bed. Levi is 10 and is very cognizant of his Dad's authority. So he went to bed. In tears. I followed him in and spoke with him. Hugged him, loved on him, and reminded him that Daddy is still Daddy....just having a tough chemo week.

I then came out and proceeded to tell Larry that he had a little boy in the other room to whom he needed to apologize. Larry didn't even really "get it" then... but he did go and apologize. Later we talked about these.....mood swings.....for lack of a better word. And Larry is really, really struggling with them during chemo. Especially at work. He's really afraid he's going to have a career defining moment in a fit of anger....

I don't know how to help him. He doesn't really know why, or where, the anger comes from. It's just....there.....

No real answers. But we are struggling with that, too. Luckily for us, it only seems to be the first week of chemo, and by the weekend and the following week, he's back on an even keel...temperament wise.

Just another sucky thing about cancer that is stealing away another part of my husband....

Anji

Julia and Anji...I know what you are saying with the weird moods. I would never call my husband a mellow person.....he's from Brooklyn, if that means anything to you. But, he is an incredibly outgoing, positive, encouraging, kind-hearted person. That's why everyone loves him. But one night, he totally went off on my 17 year old son and then got made at me for not supporting him. He actually seemed like he was insane. I couldn't support him, he was acting like a crazy person. I had to talk him through the whole thing and get him to apologize to our son, who was completely freaked out. Is it chemo, is it stress? Who knows....but it was definitely very strage and scary.
Elissa

Hi
Im new here - first post. Found out this week that my husband has very advanced mucinous type colon cancer that is through his peritoneum and omentum. He is due to have a stent put into his colon on Tuesday - as its partially blocked. Hopefully that will go well & then he can start FOLFOX/Avastin on Wednesday. Its been one big week thats for sure.

We are both 33,living in Australia. Met at University, married for 12 years this year and have a 3 1/2 year old daughter. I cannot understand how you can go from a perfectly happy and healthy guy to having to fight like hell to live out the year. Theres just no sense to it. Its been tough on our daughter - she just doesnt understand what is going on and keeps trying to make us feel better.

Not too sure how I can help him right now - most of terminology is new to us too. So very glad I have found this & look forward to reading lots of stories and tips. One wonderful thing has been to see how long ago most of the diagnosis dates are - every extra day/month/year is brilliant and I hope we all have lots.