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Good News, Bad News

kmygil
Posts: 881
Joined: Feb 2007

Hi Everyone,

I have become so lazy about posting and answering, but I do read and sympathize. I guess it's my turn to kvetch again. Besides the bone pain I am left with after chemo (plus neuropathy etc), I now have a torn meniscus which needs surgery. I was SOOOOOO tempted to say the heck with it and limp the rest of my life, but now my last CT showed everything was ok, so I'm having the surgery. Yes, I know I should be ecstatic about the clear scan, and I am. But I am just not happy about another surgery.

I am ornery about it to the point where I bawled out the orthopedic surgeon about general anesthesia. I asked why, oh why, couldn't it just be done with a hypnotic, like when you get your colonoscopy. Bless his heart, he explained that they would be manipulating my knee & leg so much that the hypnotic wouldn't work. I think he's afraid of me:)

Anyway, I am lucky in so many ways, so I assumed it was something with my meds. My doc upped my antidepressants and gave me something to deal with the rage. I think I just need a true vacation to get my head straight. You see, my work now has a policy that you must use up all your vacation & sick time before your FMLA kicks in. Fine. However, they make you use your vacation & sick in 4-hour increments. The upshot is that I will NEVER have a vacation again. This has enraged me to the point of being completely irrational at times. It's like being punished again and again for a disease I didn't ask for. GGGRRRRRRR.......

Don't we have enough issues and obstacles? Why should your employer make things worse? I'm sure I can find another job if the economy ever gets better, but then what? Start over at entry level somewhere else? I'm feeling trapped by this disease and my meds aren't doing the job they were before. Maybe some good scream therapy....? Last week I almost told our HR dude that I was trying to see things his way, but I couldn't get my head that far up my a-s. Hah!

Thanks for letting me vent. I usually try to be positive, but right now I just need to whine. Thanks again!

Kirsten

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

The whole process gets overwhelming and frustrating, doesn't it? It sometimes feels like things are stacked against me. I'm an independant contractor so I get unlimited time off - of course, I don't get paid. My income has dropped to the point that we are considering bancruptcy, as I'm back in chemo and will (hopefully) have a liver resection this winter. No vacation for me, either. I sometimes miss the days of salary....

I guess what I really want is to have a two week vacation from cancer -- go to the beach, feel good, no worries, no impending treatments...want to come? LOL Maybe I'll take a walk.

I hope you get to feeling better better and good luck with your surgery. You can vent to me anytime!

Kimby

kmygil
Posts: 881
Joined: Feb 2007

Oh yeah! I'll go with you on that walk as soon as my knee is fixed:) There is still humor, though. When I went for my last blood draw, the phlebotomist asked me where else I could possibly have surgery! I had to laugh.

Thanks for letting me vent, Kimby!

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Tell that phlebotomist not to tempt fate! I don't want to know where else they can find to operate -lol. Taking a medical history the other day,the nurse asked if I had any 'other' surgeries. DH told her to take a seat!

Kimby

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msccolon
Posts: 1956
Joined: Oct 2004

Too funny, Kimby! When I was in for my last colonoscopy my nurse was asking about surgeries I had done and I actually forgot about a few of them until she asked me about a scar she was staring at! So then I had to add a few more (minor, the input of a port, having to have it removed, then the input of another port, which luckily is still in). You would think they could just make a printout off their computer, and just let you update it!
Mary

kmygil
Posts: 881
Joined: Feb 2007

LOL!!!! Yeah. Like when they ask you to list all the medications you're taking, all the surgeries you've had and all your drug allergies. I carry around a sheet and just attach it to the histories now.

fez1
Posts: 47
Joined: Jul 2006

Kimby,
I just said to my husband "can't we just get in bed, pull the covers over our heads for about 1 month and forget that you have cancer"? He said, "Why not a month on a deserted beach somewhere with perfect weather, no doctors, CT scans, chemo etc". Oh, wouldn't it be nice?? On the practical side, My husband had just been laid off from his job a few months befoe being diagnosed. He became an independent contractor, was so sick from chemo. He applied for and was granted SSDI. We would have gone under without it. As it is it is so much less than his salary that we may have to declare bankruptcy soon but for now we're hanging on. I think that this would take the pressure off of you right now. They were very nice, sympathetic and they understood that at times he could work but not other times.

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kimby
Posts: 804
Joined: Oct 2007

Fez, the 'under cover' routine works for me! I would like to play pretend for a short time. A friend of mine has been trying to get me to apply for SSDI. At least for now, I'm able to work part time. DH has convinced me to talk to my onc about it next week. The pressure to support my family financially is enormous, so I can only imagine how your DH feels. I think it is harder on men to lose their earning ability.

A couple of years ago I would have thought this financial mess was about the worst thing ever. Perspective brings clarity. We'll be ok and somehow it all works out. Thank you for sharing that with me. It means so very much.

Kimby

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msccolon
Posts: 1956
Joined: Oct 2004

While I certainly haven't had feelings so strong I could categorize them as rage, the feelings definitely go up and down with this fight. I split with my husband shortly before my initial diagnosis so had the pleasure of dealing with an at times nasty divorce while dealing with my cancer diagnosis and everything THAT entailed. Then, when my recurrence came I had to deal with getting my insurance established in the federal version of COBRA, since my husband was retired military. We were married for almost 22 years, but only 17 1/2 years of that crossed his military career so I was only entitled to 1 year of coverage after our divorce. So, here I am coming up on the last quarter of insurance with no prospects after that. I have been working for the same company for over 15 years, but he is a small company and has never provided health insurance except for a short time about 10 years or so ago ( I had been promised health coverage at hire, but had never pushed the issue since the military coverage was so good). Now, with my diagnosis I am basically uninsurable and i am PISSED! I had dedicated most of my life to my husband and his military career, taking care of our family during the many times that he was deployed and the many moves (as do most military wives). And I have dedicated a significant number of years to my job (in IT, rarely does a person stay at a company for more than 5 years). But now, in my time of need, neither of those things will matter a single bit. I will still come up to Jan 28th 2009 with colon caner and no health insurance to continue treatment. What's worse is that I make too much money to qualify for public assistance, but not enough to cover my treatments (I suppose if I won the lottery I could cover it). I've never required a lot to make me happy, but i can't imagine what's going to happen when my insurance goes away... Sorry about running off your subject, but listening to you vent made me want to vent as well! I feel better, I hope you do as well! Mary

kmygil
Posts: 881
Joined: Feb 2007

Hi Mary,

You put things into perspective for me. As much as I would like to choke the living daylights out of my husband, (at least once a week he tells me that my cancer is going to return & I will be dead in 2 years), I do have his health insurance and it is very good. I swear, if I had the $$$ I would send it to you. No one should have to deal with this disease AND have to stress about the finances involved in treatment, not to mention divorce and all that ugliness! I will keep you in my prayers.

Hugs,
Kirsten

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Thank you very much! But to be honest, I would rather be in the financial situation I will be in come January than to have continued in the marriage I was in. And I can't BELIEVE your husband tells you continuously that your cancer will return and you will be dead in 2 years! How can you stand it? When DH and I were in counseling trying to save our marriage, prior to my diagnosis, when our counselor was frustrated by the response (or lack thereof) we were getting out of DH she asked me a question that changed my life. I couldn't decide if I should continue fighting for our marriage or admit defeat and she asked me "if you found out tomorrow that you only had 6 months to live, what would you do?" My immediate response was that i would kick is a$$ out. And she told me that I had my answer as to what I should do. I went home and told him to leave and that was that. It certainly wasn't easy, but it WAS the right thing to do. Perhaps if i had made that decision sooner, I wouldn't be dealing with this cancer... but I may be dealing with something else... we never know what life would give us if things had changed. I have no regrets because I know that I am who I am because of where I have been. God has brought me thus far and will continue to carry me into the future. I just need to not worry so much! Thank you for your prayers, we can all use as much prayer as we can possibly get! God be with you. Mary

kmygil
Posts: 881
Joined: Feb 2007

Mary, you are now my idol. You have courage I don't.

My husband is an alcoholic and he says exactly what's on his mind when he's drinking, which is every Friday night and all day Saturday. I remember his inability to get my meds during chemo because he was too drunk to go get them. I had to call a friend to please get my anti-emetics and pain meds when I was too debilitated to drive. He also refused to go grocery shopping. He would wait until I had my 2 days of feeling human and let me know what we were out of so I could go get it. He came with me to chemo exactly once. When I couldn't take myself, he would say that he had to go to work since my treatment was dependent on his benefits, so I needed to call friends to take me. Guess what? They had jobs, too!

However, the upshot of all of this (outside the rage, of course) is that I have determined to outlive him. It will be the sweetest revenge.....

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

with the additional stress your husband puts on your situation, it is a wonder you make it from treatment to treatment. Do you have other family members in the area? A church family that can help? A lot of communities also have services available to people in treatment for cancer that includes rides to and from treatments. I would check with your local ACS or even at your oncologist's office; they usually have information regarding services that the community provides. Be strong and be safe. Mary

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

I'm so glad that I'm am not the only one that had this type of hard decision. I have 3 kids with my 'soon to be' ex. After DX and his lack of support I took a good look at the situation when he moved out and figured I didn't want to live the way I was. I told him that he couldn't move back in. He then decided that he wanted a divorce. It was a relief to me. Yes I knew it would be hard with three teenagers but it was better then living with him.

I'm so sorry you both have this kind of stress and I also wonder if my dx would have been different without the stress of living with my ex. His first words after I was dx was what would he do with the kids if I wasn't around? He also hardly visited me in hospital and wasn't there the day of the surgery. It got to be bad when you have nurses asking where your husband was... Oh well that is passed and once the divorce is final I'm going out and celebrating. HUGS to you both.

Lisa F

kmygil
Posts: 881
Joined: Feb 2007

Hi Lisa. I heard an echo. My husband came every day for about 5 minutes to see me. Then he would say he had to go cut grass or something. It's all in the past now and I know exactly how he is. The wierd thing is I think he loves me, but doesn't know HOW to love. I also think he's scared to death--that's why he verbalizes the most awful things. He's scared they will come true. I've tried to teach love by example, but it just hasn't penetrated. I can see he's envious of the relationship I have with my family, but he doesn't translate it into something applicable to himself. He has an older brother who left home when he was 17 and never came back. His mother used to contact the Red Cross once a year to find him just to see if he was alive. He has another brother (a really nice guy) who lives not too far from us, but we only see them once a year at Christmas. They don't talk or anything very often. His sister-in-law says that her husband shows some of the same traits. I don't know what the dynamics were in that family, but they must have been awful.

Anyway, you and Mary made hard, hard decisions and I admire you for it. But even before diagnosis, I always felt that God put me here to love this man, because heaven knows, he needs it! Until I kill him, that is...:)

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msccolon
Posts: 1956
Joined: Oct 2004

OMG! I was sure that if mine had been around I would have had to comfort him because he was having such a hard time dealing with a wife that had cancer! It was always about him. In fact, one time he was trying to show what a loving ex-husband he was and commented that "I still care for you, so if you need anything..." and I'm thinking IF I NEED ANYTHING I WON'T COME TO YOU! He wasn't much help when we were married, why does he think i would believe he would be help now that we weren't? In fact, I remember having a conversation over the phone with him once when I was letting him know he would have to kick in some money for the mortgage while we headed into another 6 months of the house on the market (yea, all while I am doing cancer treatments) with no buyers on the horizon. He made some comments about how sorry he was, he had tried his best, he didn't have enough money to kick any more for the mortgage ( i had bank statements and paystubs that said otherwise) blah blah blah and i asked him who else was in the room with him? He said what do you mean? I said if only he and I were listening to this conversation, which one of us did he suppose was buying his story? Anyhow, I really am not bitter over the divorce, just sometimes I shake my head and wonder how an otherwise intelligent woman managed to stay in that situation for as long as I had. I did get 2 beautiful girls out of the deal, however, so I am definitely the one who came out ahead! Good days ahead! Mary

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Gosh, Ladies...what each of you has been through makes my head spin! I think I need an aspirin... I truly admire all of you for enduring cancer while dealing with personal issues as well. My DH - Dear Hubby - went through a similar situation with his ex-wife. It was really bad (he got served divorce papers in the hospital the day after his colon cancer surgery - after having just come home from his step-dad's funeral, who died of cancer). All of you are models of resilience!

Good luck Mary navigating all that insurance stuff...all of that is so scary. And Kirsten, while I don't condone violence, I know for certain a good stiletto stomp on the big toe can be quite a sobering experience....accidentally of course :)

Stay strong!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Katie, I had a chuckle as i was using DH because those of you with good husbands have a different translation for the D :). Unbelievable how Bob's ex could be so heartless... good riddance to bad rubbish. He is SO lucky to have found you after all that! I imagine he is wondering how he managed to survive the witch long enough for you to come into his life! And Kirsten, you could also try the "I was sleeping (and on medication) and didn't know I smacked the heck out of you" routine that my DH tried once. <<<>>>. We shall overcome! God be with you all! Mary

kmygil
Posts: 881
Joined: Feb 2007

LOL!!! LOL!!!! LOL!!! No Officer! He fell on the knife--18 times!

rrob
Posts: 160
Joined: Nov 2007

I live in Texas and we have a state insurance pool that has to accept you when your COBRA runs out and you are not able to get coverage anywhere else. Don't know if this is available where you live, but you might check into it. It's pricey, but better than no coverage. Hang in there!

Rebecca

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msccolon
Posts: 1956
Joined: Oct 2004

I am checking on my options and have printed up a few things, but as far as I can tell, NCs only option is that they require BC/BS of NC to at least offer ONE policy to people like me. However, I don't have $2000 a month to pay for this policy in addition to what it wouldn't cover, living expenses, etc. But keep the ideas coming, I am willing to check anything! mary

kmygil
Posts: 881
Joined: Feb 2007

What about Medicaid? My father had no insurance & he had a multitude of problems related to diabetes. When he was hospitalized for the 3rd time & had his amputation and insertion of a pacemaker, the bill was about $250,000, but they did what was called a "spin-down" and the final bill was reduced to $12,000 which we paid off in installments of about $100 a month.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I believe I make too much to qualify for Medicaid, but i have heard something about catastrophic medical bills that can be calculated in when considering qualifying. I haven't checked into that yet. Thanks!

crazylady
Posts: 544
Joined: Jun 2004

Hi All,
I can certainly relate to this subject. I am currently legally separated and cannot get divorced because he carries the insurance. Of course, he did tell me that he wants a divorce in 2 years when our youngest turns 18 because he may want to get remarried.

I was turned down by social security disability because I was a stay at home Mom for many years and didn't work long enough to pay into the system. I spoke to a lawyer today to find out if I have a case and was told that there is no case and no law that applies to me. If I was retirement age I would qualify off of my Ex so I thought that I would have a case. I am living on child support and supplementing it with money from the sale of my house. Eventually both will run out. I have a hard time believing that a decision that I made 30 years ago is causing such a problem now. Who knew that I would end up in this situation? I do not regret separating from my husband and I don't regret staying home with my kids. I just need to figure out what to do next! I wish I had a magic wand and could see into the future. I really like the pull the covers over my head idea or how about a time machine to go back to before cancer and have a complete redo?

Sometimes I think it's unfortunate that I have to live in reality!

Take care,
Jamie

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mk1117
Posts: 46
Joined: Jun 2006

I am so amazed with your resilience - you are some strong and admirable women!! I so glad those of you decided to make the decision to continue your life as a single person rather than staying in an unhappy marriage. Being diagnosed with cancer really makes you step back and take a look at yourself and evaluate what's really important, doesn't it?

It is such a shame that our insurance system is as screwed up as it is. I'm not a huge political person, but someone told me the other day that having Barack Obama in office would not be good for health care -- and how has health care been beneficial under the current leadership?

One question about social security disability - it's my understanding that in order to be eligible, you have to have had mets beyond the colon and nearby lymph nodes. Is that accurate?

You girls are my heroes!

Kathy

kmygil
Posts: 881
Joined: Feb 2007

Hi Kathy,

I have researched Social Security Disability. There are 2 types. One is SSI which is for people without any income, or income so low that it may as well be nothing. The other is based on how badly disabled you are. The thing I found "funniest" about it is that regarding cancer, you have to be "terminal"--6 months or less to live. The funny part is that it takes 6 months to get it started. So essentially they never have to pay, because they don't pay when you're dead. It's all very ridiculous.

Also, I have asked to be permanently excused from jury duty. I cannot sit for long--my legs swell and I am afraid of the return of the blot clot. Also, my scars hurt if I sit for long periods. I have to get up to move around & let everything fall back into place. They don't want to hear it. So I guess I will go, and in the middle of everthing I will get up & walk around & end up in jail for contempt.

Gotta love it!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Don't worry, one of the lawyers will excuse you as long as you are very clear about not wanting to be there and why. I actually was FINALLY called for jury duty at the age of almost 47 for the first time and i was psyched! I had always wanted to go. I even got to sit on an empaneled jury! I had contemplated being excused because i was due for treatment that week, but i decided to just put off treatment a week (it's only Avastin so no big deal). There were many excused by the lawyers because they just didn't want to be there. It's in the lawyers' best interest to have people who want to be there. As far as the waiting to do anything, just bring a cushion, or whatever is necessary for you to be comfortable and who cares if you have to get up and walk around! If the judge is concerned he will ask you why and you will get your chance to tell him and he'll probably excuse you! On another note, I am sorry you have so much discomfort from all this. I hope the discomfort improves with time. Mary

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dearest Ladies,

SIGH!!! My heart was heavy as I read each of your posts. How brave of you to bare your soul and share your personal stories. Someone needs to invent a new word to describe each of you because the ones that come to my mind don't seem to adequately convey the courage that each of you display on a daily basis.

Thank you CSN for providing this forum where fellow survivors can find comfort and support from those who really care.

Please know that I'm praying for solutions to each of your unique dilemmas.

Hugs,

Kay

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I have just read through all the messages in this thread and they really and truly are mind-boggling! The strength and courage you women are showing is truly inspiring! I'm so sorry that it meant dissolving your marriages because let's face it... when you are starting your life out as a new married couple you aren't looking forward to the day when you might have to divorce your new husband... that thought doesn't even come into the equation. But life goes on and no one knows what the future will hold for them. Not only have you ladies had to go through the heartache of separation and divorce, but the heartache of having husbands who weren't there to support you in your hours of need.. and then to have to deal with cancer on top of all the personal life stuff! You are truly amazing women!

I kind of look at myself now and almost feel guilty at how much easier I seem to have it. I am single but with a huge support group of friends and work colleagues. As some of you know, I live in Canada, so our health insurance is universal and subsidized (not to be confused as social medicine). What this means is the monthly insurance premiums are so incredibly affordable it's almost sinful... IE: for a single person in British Columbia, the monthly premium is $50/month. For a family, it is $108/month. My employer covers that so I don't even pay the $50/month premium. I also have what is called "Extended Health Benefits", which is a secondary insurance coverage (also supplied by the employer) which covers some of the extras that the basic insurance might not cover. IE: ambulance services, having a private room in a hospital (vs a 4 bed ward), prescriptions, after you leave the hospital, where the insurance covers 80% of the cost, I cover 20% until I reach a certain amount then, prescriptions are only $1 per prescription. In other words... there is nothing about my healthcare that is going to break the bank. When I had my original surgery done, I was quite a mess ... not only did I have a large tumour that had already perforated through the intestine, an abscess had formed around it so I ended up also having perotonitis (infection of the abdomen). I ended up being in the hospital for 30 days and my total bill for everything was $114 for the tv rental. Everything else was covered by the basic insurance plan, other than my private room which was covered by my Extended Health Insurance.

Then, another benefit I have through my employer is Long Term Disability Insurance. I have been off work since Dec 1, 2006. For the first 6 months I was off, I was on short term illness where I was paid 100% of my wages, then after 6 months off, I was eligible for the Long Term Disability. For that I get paid 70% of my wages, but retain all my benefits such as the medical insurance, dental insurance and Extended Health Insurance. It's coming up 2 years that I've been off work and I will remain off until my doctors feel I can go back... but as long as they say I can't, I remain on Long Term Disability with the benefits.

So, you can see why I might feel guilty after reading all your stories. Not only do I not have to stress out about the financial burden this disease can cause, I don't have the stress of what it would be like trying to fight this disease and being with a partner/husband who causes more stress than help.

So, ladies... my hat is off for all of you who are going through these problems. You have my total admiration and I am serious when I say I'm in total awe of the strength you ladies show. I know I've only just recently started posting here again, but in the short time I've been reading your posts, I am proud to say I have been introduced to you all, thanks to technology, CSN and the internet

Huggggggs,

Cheryl

hopefulone
Posts: 1048
Joined: Jan 2007

Hi, first congrats on the clear scan. Know you aren't looking forward to another surgery, but the clear scan is great news. My company has the same policy regarding FLMA. I have taken it for my husband as caretaker and have to use my vacation and personal time first in 4 hr increments. Having said that, don't think you will NEVER have a vacation again.. Your personal time/vac benefits atart over again at the beginning of the year again, correct? You may be able to Take your "vacation" time up front early whenever you are entitled to and if able to and depending on how much FMLA time you used in the last 12 rolling months. They will take it from your FMLA time, but I don't believe they can tell you you can't take your vacation time as vacation time. Where theres a will theres a way.
Hope this makes sense.

God Bless
Diane

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