How do you deal with others

newbride

I know everyone means well but, how do you tell people to back off and give me space. First I'm tired of everyone asking what they can do -- I have NO clue -- if I knew I would have already asked for the help. If they really want to do something for me - then take me out for a drink or cup or tea or bring me to a day spa or something - be creative.

Then I have to deal with my parents -- ok here I am 42 years old and they are telling me "take notes so you don't forget what the doctors say" etc hello I'm not an idiot. To was the worse - I was running around doing errands and my cell phone rang three times in a matter of 10 minutes scaring the hell out of me since my husband was home alone - each time I had to grab the phone while driving - once I saw it was my parents - I let it go. When I got to the palce I was going I listened to the voice mail and it was a basic "hello what's new call when you have time" -- by the time I got home 1/2 hour later I called and they were like "What's wrong you didn't pick up the phone" and I was like "i was running errands" and they were like "well we were worried cause you didn;t answer" -- ok do you want me to answer the phone while I am driving and get a ticket or worse get in an accident when I have enough problems as it is.

I think all the others will do me in before my husbands cancer does!!

Julis1111

Dealing with Others
Newbride - you are too funny, your sense of humor will see you a long way. I know exactly how you feel! My Dad, who I don't talk with much at all, now calls if I don't answer his e-mails right away. He says since he didn't hear anything he wonders if something bad has happened. I've tried to reassure him that I will let him know if anything momentus happens.

My sister calls at least once a week, leaves a short messag saying she's there for me, tells me not to call back if I don't want to. It's just really nice to know she's there. Why do some people do it right and some people drive you crazy?

I guess I resent the people I have to reassure, because I need reassurance myself right now. It's too much to try to make other people feel ok about what is happening. But God Bless them, they do care.

It cracks me up when they start on the "I don't know why something SO TERRIBLE had to happen to your family", or the "how are YOU doing?" They don't seem satisfied if I tell them I'm doing well, considering. But I'm not about to have a breakdown on command! I'll post back if I think of any brilliant comebacks or responses. I'm learning a lot about what not to say to others.

MichelleP

Julis1111 said:

Dealing with Others
Newbride - you are too funny, your sense of humor will see you a long way. I know exactly how you feel! My Dad, who I don't talk with much at all, now calls if I don't answer his e-mails right away. He says since he didn't hear anything he wonders if something bad has happened. I've tried to reassure him that I will let him know if anything momentus happens.

My sister calls at least once a week, leaves a short messag saying she's there for me, tells me not to call back if I don't want to. It's just really nice to know she's there. Why do some people do it right and some people drive you crazy?

I guess I resent the people I have to reassure, because I need reassurance myself right now. It's too much to try to make other people feel ok about what is happening. But God Bless them, they do care.

It cracks me up when they start on the "I don't know why something SO TERRIBLE had to happen to your family", or the "how are YOU doing?" They don't seem satisfied if I tell them I'm doing well, considering. But I'm not about to have a breakdown on command! I'll post back if I think of any brilliant comebacks or responses. I'm learning a lot about what not to say to others.

I actually envy both of you
I actually envy both of you reading your posts. I wish to GOD I had people who would call and let me know they care. Perhaps they call you too much and it's annoying but it's better than being totally alone with no one to talk to.

seaboy

Dealing with others
New Bride, We are at a different stage of the struggle than you but I've been exacly where you are. It seems sometimes that others see our situation as even more catastrophic that it actually is. Their own fears about death and illness have to run rampant while our lives as you well know are filled with a fairly regemented strategy of how to deal with the situation. Keep up the good spirits and maybe your family needs a little straight talk about how they can best help. Their good intentions are driving you batty when you need your energies to deal with being a caregiver. Possibly just reassuring them that you will ask for help when you need it will calm them down. Maybe a schedule for touching base. Best of luck, been there, sometimes wished we could just retreat to the mountains somwhere, Oncs just don't make house calls to the ridge anymore . Seaboy

newbride

MichelleP said:

I actually envy both of you
I actually envy both of you reading your posts. I wish to GOD I had people who would call and let me know they care. Perhaps they call you too much and it's annoying but it's better than being totally alone with no one to talk to.

MichelleP
You're not alone....if you need to talk please feel free to email me lori-peter at hotmail dot com

This is all new to me -- although we have been together for 3 years, my head is spinning -- right when I should be so happy planning my wedding - he was diagnosed with the tumor and had surgery in March. He was on the road to recovery and all looked great -- had a wonderful wedding day and then the last day of our honeymoon he had a bad bloody nose, had trouble breathing through his nose and by the time we got home his nose was swollen - the tumor came back - he had the second surgery on our one month anniversary.

And people wonder why I'm on edge with them??? I haven't even gotten to enjoy married life without having to take care of him :-(

PS: I'm not complaining, I love him with all my heart, but I certainly was not planning on this so quick in the marriage

kimby

Pick Me! Pick Me!
This is one I might be able to help with! WooHoo! I am the one living with canzer but I see my husband struggle with this, too. He never knows what to say and people are relentless. Although annoying (how about asking, "Can a schedule a massage for you? Can I shine your shoes?" - be specific!) It really is a blessing. Most people really want to help, some don't. The more they want to help the more annoying they can be. LOL Here's what I've done to help Kevin (husband).

People really want to help but don't know what to do. I created a list of what would help HIM and my family. I was diagnosed at 43 (I'm 45 now and still in treatment, so we still get offers) so our kids are older and the youngest is in high school. Our needs are somewhat different than other families so our list is, too. Customize it to fit your particular needs:

*organize a group of friends/family to bring in meals 3 nights a week. (Not having to worry about groceries and cooking those nights is a wonderful break; you get leftover night at least 1 and some weeks 2 nights; people really like this option but you have to help provide a list of people to get on the schedule)

*"I need a break. Let's go out for a drink on Friday." Be as specific as possible and make it a standing date if you really have fun. YOU really do need a break!

*yard work of any kind. My mother loves to work in the yard, I can no longer do it and Kevin is too overwhelmed with his list to take care of flower beds (although he doesn't have trouble with his beloved garden...hmmmm) so she takes care of my flowers for me.

*run errands: grocery shopping, post office, pool chemicals/testing, oil changes, library, dog groomer, etc

*bring a special treat for your husband (ice cream, strawberry shortcake, cobbler, cookies, and favorite coffee?) and stay for a visit. "How about Sunday afternoon? We'll be available about 2pm."

*drive your husband to chemo/radiation

I found that if I tried to tailor the task to the personality of the person it really helped. My most outgoing friend called around and set up a meal schedule. It was a social outlet for her. My most organized friend set up a spread sheet for her. People that really didn't mean it opted out with excuses. That didn't bother me; they were trying to be polite. I have a sister in law 4 hours away that didn't feel involved so she pays for a housekeeper twice a month. How great is that?

This has taken so much pressure off of my husband while I continue with an involved, time consuming and intense treatment at a treatment center 75 miles away. 2 years in and counting.

HTH. But if you just needed to vent ignore the above and go to a fun movie! LOL

Kimby

lily33

Suggestion
newbride,

I appreciate when friends and family call to ask how my husband is doing. However, I completely understand how frustrating it can be as well. There were times I sat at the hospital for 12 hours and all I wanted to do was come home and rest...only to have the phone ringing off the hook with people wanting updates. Every time I "updated" someone I was re-living each horrible experience. I would get so drained. I knew people wanted to help, but in the end some were doing the opposite because they were really just calling for me to reassure THEM.

What helped me was e-mail. I decided to send e-mails updating everyone of my husband's condition. That way I could put detailed info in the e-mail such as drugs he was on, his general condition, or to just thank people for their prayers. Then, all I had to do was re-tell events one time, but everyone would get the information. As a result, people started e-mailing well wishes and prayers instead of calling. I have actually saved them all and re-read them myself or to my husband when we are down in the dumps. This dramatically cut down on phone calls, because everyone felt updated and like they were doing something when they e-mailed back.

Also, don't feel bad about just letting the phone go to voice mail. There are many times that I don't feel like talking. If people are going to be mad at you for not returning calls-then so be it. You have enough to worry about-if people don't understand that then it's their issue.

lily33

zahalene

lily33 said:

Suggestion
newbride,

I appreciate when friends and family call to ask how my husband is doing. However, I completely understand how frustrating it can be as well. There were times I sat at the hospital for 12 hours and all I wanted to do was come home and rest...only to have the phone ringing off the hook with people wanting updates. Every time I "updated" someone I was re-living each horrible experience. I would get so drained. I knew people wanted to help, but in the end some were doing the opposite because they were really just calling for me to reassure THEM.

What helped me was e-mail. I decided to send e-mails updating everyone of my husband's condition. That way I could put detailed info in the e-mail such as drugs he was on, his general condition, or to just thank people for their prayers. Then, all I had to do was re-tell events one time, but everyone would get the information. As a result, people started e-mailing well wishes and prayers instead of calling. I have actually saved them all and re-read them myself or to my husband when we are down in the dumps. This dramatically cut down on phone calls, because everyone felt updated and like they were doing something when they e-mailed back.

Also, don't feel bad about just letting the phone go to voice mail. There are many times that I don't feel like talking. If people are going to be mad at you for not returning calls-then so be it. You have enough to worry about-if people don't understand that then it's their issue.

lily33

There is a wonderful site...
called CaringBridge (just google it) where you can create an online journal and update as desired. Readers can sign your guest book and include notes and comments back to you. This way you can record everything in detail without having to repeat yourself. You can post photos as well. It really is a God-send for keeping everyone informed with the least possible hassle.

sally72

be blunt
i also got tired of the stuff other's come up with . so i've had to adopt a this is how things are and i need time and space to take care of things . i know you really care and i truely apprecate it but please call at this time of day when i have time to give you my full attention and not be distracted by other things ... it's not that i don't want to talk but i have so many demands on my time i'm scheduleing my days so i can take the best care of my husband

newbride

lily33 said:

Suggestion
newbride,

I appreciate when friends and family call to ask how my husband is doing. However, I completely understand how frustrating it can be as well. There were times I sat at the hospital for 12 hours and all I wanted to do was come home and rest...only to have the phone ringing off the hook with people wanting updates. Every time I "updated" someone I was re-living each horrible experience. I would get so drained. I knew people wanted to help, but in the end some were doing the opposite because they were really just calling for me to reassure THEM.

What helped me was e-mail. I decided to send e-mails updating everyone of my husband's condition. That way I could put detailed info in the e-mail such as drugs he was on, his general condition, or to just thank people for their prayers. Then, all I had to do was re-tell events one time, but everyone would get the information. As a result, people started e-mailing well wishes and prayers instead of calling. I have actually saved them all and re-read them myself or to my husband when we are down in the dumps. This dramatically cut down on phone calls, because everyone felt updated and like they were doing something when they e-mailed back.

Also, don't feel bad about just letting the phone go to voice mail. There are many times that I don't feel like talking. If people are going to be mad at you for not returning calls-then so be it. You have enough to worry about-if people don't understand that then it's their issue.

lily33

lily33
You got it right -- that's what I started doing -- the email thing -- it works like a charm!!!

seanslove

sally72 said:

be blunt
i also got tired of the stuff other's come up with . so i've had to adopt a this is how things are and i need time and space to take care of things . i know you really care and i truely apprecate it but please call at this time of day when i have time to give you my full attention and not be distracted by other things ... it's not that i don't want to talk but i have so many demands on my time i'm scheduleing my days so i can take the best care of my husband

being blunt
My husband has friend and family that have now appeared out of the wood work after over five years of silence,which does not make thing any easier. Everyone was really starting to drive me crazy as he does not want to see any of them right now. He's lost a lot of weight and only gets one maybe two decent,not good,but decent days a week, We hope after the first round of chemo next week this will improve.
Anyway,about a week ago I had had enough of the daily baggering;why doen't he want to see me,I'm coming anyways,and so on and so forth. I had to get tough and told everyone that called that day;"Look,this is his cancer and his fight,we appricate your concern and well ment intensions,however,being that he is the one ill,I must abid by his wishes,and your hurt feelings,I am sorry to say,at this time do not matter." I can tell you that went over like a lead ballon,however,the harsement has stopped and my phone no longer rings off the hook.

sally72

MichelleP said:

I actually envy both of you
I actually envy both of you reading your posts. I wish to GOD I had people who would call and let me know they care. Perhaps they call you too much and it's annoying but it's better than being totally alone with no one to talk to.

i have almost no family i relate
zehannah7@gmail.com please put who and were from in topic so i know it's safe to open

newbride

seanslove said:

being blunt
My husband has friend and family that have now appeared out of the wood work after over five years of silence,which does not make thing any easier. Everyone was really starting to drive me crazy as he does not want to see any of them right now. He's lost a lot of weight and only gets one maybe two decent,not good,but decent days a week, We hope after the first round of chemo next week this will improve.
Anyway,about a week ago I had had enough of the daily baggering;why doen't he want to see me,I'm coming anyways,and so on and so forth. I had to get tough and told everyone that called that day;"Look,this is his cancer and his fight,we appricate your concern and well ment intensions,however,being that he is the one ill,I must abid by his wishes,and your hurt feelings,I am sorry to say,at this time do not matter." I can tell you that went over like a lead ballon,however,the harsement has stopped and my phone no longer rings off the hook.

Hi seanslove
That is an awesome line....I think I am going to steal it from you "this is his cancer and his fight..."

I just went through this with him this weekend his sister asked me if we wanted company this weekend and trying to make excuses, etc I said to her I would check with him becuase he has been sleeping alot, after all he is still healing from major surgery. I asked him what he thought and he was like "Well, we can't say no that would be wrong and rude" and I was like "if you don't want to see them you don't have to I'll tell them nicely that you are just not up to company - it's my life and home as well and if you do not want them then I will deal with them".

I think most people just want to see that he is "still ok" but he's not and if we had only seen you in the past for special occasions and holidays nothing should change now - right??? I really don't think people "get it" anymore.

Seanslove -- how long ago was your husband diagnosed? What type of cancer (sorry I'm I'm getting too personal).

seanslove

newbride said:

Hi seanslove
That is an awesome line....I think I am going to steal it from you "this is his cancer and his fight..."

I just went through this with him this weekend his sister asked me if we wanted company this weekend and trying to make excuses, etc I said to her I would check with him becuase he has been sleeping alot, after all he is still healing from major surgery. I asked him what he thought and he was like "Well, we can't say no that would be wrong and rude" and I was like "if you don't want to see them you don't have to I'll tell them nicely that you are just not up to company - it's my life and home as well and if you do not want them then I will deal with them".

I think most people just want to see that he is "still ok" but he's not and if we had only seen you in the past for special occasions and holidays nothing should change now - right??? I really don't think people "get it" anymore.

Seanslove -- how long ago was your husband diagnosed? What type of cancer (sorry I'm I'm getting too personal).

newbride
Finally,someone who gets us,YEAH!!!! People just don't get it,you are so right! How am I doing,dumbest question on the planet: Like Crap thank you and yourself? How's Sean feeling today:Uh like crap and yourself? Hello he has stage four cancer how the heck do you think he's feeling or I'm doing?DUH! Oh yeah and if I had a top ten list like Daivd Letterman,number one dumbest question:"Can we do anything?" Uh,can you cure cancer? No,well,nothing then.
After a month long battle in April with what we thought was the flu bug,on May 18th,and yes waited this long because we had no insurance or extra money to go to a doctor,we went to the ER as he could no longer catch his breath. This truned out to be because of malignat pleurl effusion in his left lung which has permentaly collapesed his lung and is inoperable. On May 22,while part of his 12 stay there,we were told he had some form of cancer as they saw cancer cells in the fluid they sent to the lab from his chest tube. The day before they sent him home we were then told it was stage four. They sent him home with his pleur-evac chest tube and all and but him on oxygen. All of this followed my dozens of doctor visit,scans,and miseriable tests,now we arrive at the tube coming out three weeks later. That was three almost four weeks ago. Now,since the prolonged treatment came down to money,even though they said the waiting on Medicaid would not interfer with his treatment,bull crap,it has. Now Tuesday,July 14th he starts chemo.

All this time,in stage four,they have risked his health for what:MONEY! It makes me so angry! But low in behold,now that we have state funded insurance the wheels of change have magically been greased,so much so,that at first they were going to admit him for five days to do chemo and now that we have state funded insurance,only the first five hours of the push drug will be done in short stay/outpatient,and the next two 23 hour drips will be done at home,which we change the bags ourself and at the end Home infussion comes in to DC the line and remove the huber needle from his port.
Now isn't that amazing,as soon as we had insurance,the five day stay was not nesaccary and all turns out can be done at home. Therefore,there was no need for hospital admission other than the fact home inffusion would not come to DC without insurance. My lord what has the world come to when money outweights a person need for med's?
Stay strong,and if your husband does not want people around,keep them away. For mine the chance of being upset is not an option,as when he gets the lest bit upset he can not breath well,begins dry heaving,and his heart starts racing. Here's my top five questions and answers,feel free to use any of them,David Letterman would be proud:
TOP FIVE DUMB QUESTIONS AND ANSWERS:
5) Q: Is his cancer serious? A) I don't know can cancer be serious?
4) Q: How's he feeling today? A) About the same:like crap and yourself?
3) Q: How are you doing? A) My husband is in stage four cancer:Like crap!
2) Q:Anything new going on? A) Yeah he hurts all the time,feels terriable.
1) Q: Can we do anything? A) Can you cure cancer?No,well not much,but thanks anyway.

Perhaps to some this may sound harsh,but the lonegr we fight,the more tired I become of facing people asking the same questions over and over again. It's like they think things will change dramaticaly from one day he has cancer to the next he won't like a flu bug that just goes away. I know people mean well,but there are just times you need to mentally put the topic away,not ignore the facts,but step away and live what life the two of you have left to live as normally as possiable. These times become so far and few inbetween,such as watching a movie when the pain has subsided or taking a short walk around the block,ok he sticks out in his hospital scrubs,houseshoes,and oh yeah dragging an oyxgen tank.lol Let me tell you that took a lot to convence him was an ok way to walk out the front door!
In the end,from my perspective,it's those moments of normalcy which get you through the rest of the rough patches. Newbie you are both in our prayers! Hang in there the ride,I feel for both of us has just begun.

newbride

seanslove said:

newbride
Finally,someone who gets us,YEAH!!!! People just don't get it,you are so right! How am I doing,dumbest question on the planet: Like Crap thank you and yourself? How's Sean feeling today:Uh like crap and yourself? Hello he has stage four cancer how the heck do you think he's feeling or I'm doing?DUH! Oh yeah and if I had a top ten list like Daivd Letterman,number one dumbest question:"Can we do anything?" Uh,can you cure cancer? No,well,nothing then.
After a month long battle in April with what we thought was the flu bug,on May 18th,and yes waited this long because we had no insurance or extra money to go to a doctor,we went to the ER as he could no longer catch his breath. This truned out to be because of malignat pleurl effusion in his left lung which has permentaly collapesed his lung and is inoperable. On May 22,while part of his 12 stay there,we were told he had some form of cancer as they saw cancer cells in the fluid they sent to the lab from his chest tube. The day before they sent him home we were then told it was stage four. They sent him home with his pleur-evac chest tube and all and but him on oxygen. All of this followed my dozens of doctor visit,scans,and miseriable tests,now we arrive at the tube coming out three weeks later. That was three almost four weeks ago. Now,since the prolonged treatment came down to money,even though they said the waiting on Medicaid would not interfer with his treatment,bull crap,it has. Now Tuesday,July 14th he starts chemo.

All this time,in stage four,they have risked his health for what:MONEY! It makes me so angry! But low in behold,now that we have state funded insurance the wheels of change have magically been greased,so much so,that at first they were going to admit him for five days to do chemo and now that we have state funded insurance,only the first five hours of the push drug will be done in short stay/outpatient,and the next two 23 hour drips will be done at home,which we change the bags ourself and at the end Home infussion comes in to DC the line and remove the huber needle from his port.
Now isn't that amazing,as soon as we had insurance,the five day stay was not nesaccary and all turns out can be done at home. Therefore,there was no need for hospital admission other than the fact home inffusion would not come to DC without insurance. My lord what has the world come to when money outweights a person need for med's?
Stay strong,and if your husband does not want people around,keep them away. For mine the chance of being upset is not an option,as when he gets the lest bit upset he can not breath well,begins dry heaving,and his heart starts racing. Here's my top five questions and answers,feel free to use any of them,David Letterman would be proud:
TOP FIVE DUMB QUESTIONS AND ANSWERS:
5) Q: Is his cancer serious? A) I don't know can cancer be serious?
4) Q: How's he feeling today? A) About the same:like crap and yourself?
3) Q: How are you doing? A) My husband is in stage four cancer:Like crap!
2) Q:Anything new going on? A) Yeah he hurts all the time,feels terriable.
1) Q: Can we do anything? A) Can you cure cancer?No,well not much,but thanks anyway.

Perhaps to some this may sound harsh,but the lonegr we fight,the more tired I become of facing people asking the same questions over and over again. It's like they think things will change dramaticaly from one day he has cancer to the next he won't like a flu bug that just goes away. I know people mean well,but there are just times you need to mentally put the topic away,not ignore the facts,but step away and live what life the two of you have left to live as normally as possiable. These times become so far and few inbetween,such as watching a movie when the pain has subsided or taking a short walk around the block,ok he sticks out in his hospital scrubs,houseshoes,and oh yeah dragging an oyxgen tank.lol Let me tell you that took a lot to convence him was an ok way to walk out the front door!
In the end,from my perspective,it's those moments of normalcy which get you through the rest of the rough patches. Newbie you are both in our prayers! Hang in there the ride,I feel for both of us has just begun.

Seanslove
Wow....I really feel like we're in this together...you sound so much like me (how old are you guys...we're both 42). By the way - what state are you in>?

It actually sounds like your husband's cancer was diagnosed similarly to ours -- while you thought he had the flu, we thought he had bad allergies. In January I got fed up with hearing him sniffing all the time and made an appt with an ENT for an allery shot (boy I wish it was that easy!).

Anyway the doc examined him and said he had polyps and a deviated septum and sent him for a CT scan to see how far up the polyps were and the exact position of the septum. Well we go back to the doctor and he tells us that "there is a mass in the sinus cavity" and that he never saw anything like this - he said he was going to do a biopsy and then decide how to handle, that this was a possibility that he may have to be referred elsewhere.

Biopsy was done on 2/19 and it took almost a month to get results -- they kept sending it to different labs since they couldn't diagnose it. Finally in March they told us that it was a tumor in the sinus cavity but we were being referred to Mt Sinai in NY as our local ENT said this was way out of his league. I asked him if the tumor was benigned or malignant and he was fairly vague and just said "all tumors are considered malignant since they don't belong in the body". I guess that should have been my answer - but it wasn't one I wanted to hear so I guess we both put it aside.

Ok, so 2 days later we meet with the surgeon in NY and tells us that my husband (fiance at the time) needs surgery to remove this tumor so we look at him and say "Ok can we schedule it for June" and the surgeon looks at us and says "Um...cancer cannot wait you need the surgery as soon as possible" We're numb and say "But we're getting married in 9 weeks" and he said "Well that's why we need to do it next week to give him 8 weeks to recover". Ok we're are totally numb.

So, now in addition to finishing all the last minute wedding stuff that I didn't do in advance I am now coordinating surgery with wedding.

He had the surgery exactly 2 months to the day of our wedding - they cut up through his upper palate, took vein and skin from his arm to recreate the palate then grafted skin from his thigh to his arm. He recovered nicely. He was still getting bad headaches so he was sent for a CT one month later and it was clean. Turned out he had wax build up in ear that caused the headache.

The wedding was awesome and we left for our honeymoon - 2 days before we were due home he had an uncontrollable nosebleed which lasted over an hour. The next day again - bad nose bleed and he felt like his nose was "stuffy" -- I emailed the doc from the ship and he told us to come into the office on Monday. We got home Saturday - still nose bleeds all day and more stuffiness. Sunday morning his nose was double the size. We went to the Er and they confirmed a blockage. The doc felt there was grandulated tissue from the march surgery that was coming out and causing the blockage. They scheduled surgery for 2 days later to open this up.

Well, the doc came out of surgery to tell me they did not open the blockage as the minute they went in discovered cancer cells and had to stop until they knew what they were dealing with -- so.....PET scans, CT scans, chest x rays, etc. All confirmed the tumor reappeared only in the nasal cavity -- did not spread anywhere else thank goodness.

Had surgery exactly 3 months from the first (one our one month anniversary). They got the entire tumor out -- again through the palate and they removed his entire upper jaw and took bone from his leg to recreate the upper jaw and then skin from the thigh to graft to the leg. He's now healing good and is on a soft puree diet.

We are hoping to start chemo/radiation on the 20th. Due to the unusual nature of the cancer -- he has a salivary gland cancer but it's not in the mouth - it's in the sinus/nasal cavities which has never been reported, they are going to treat him aggressively and have him in the hospital for 5 days doing 2 treatments of radiation per day and on a 24 hour chemo drip. He will then come home for 9 days and then go back - for 5 rotations.

We're hoping for the best - it's a double edge sword since this is so unusual we have the best doctors in the country reviewing his case, but at the same time no one has any answers for us.

seanslove

newbride said:

Seanslove
Wow....I really feel like we're in this together...you sound so much like me (how old are you guys...we're both 42). By the way - what state are you in>?

It actually sounds like your husband's cancer was diagnosed similarly to ours -- while you thought he had the flu, we thought he had bad allergies. In January I got fed up with hearing him sniffing all the time and made an appt with an ENT for an allery shot (boy I wish it was that easy!).

Anyway the doc examined him and said he had polyps and a deviated septum and sent him for a CT scan to see how far up the polyps were and the exact position of the septum. Well we go back to the doctor and he tells us that "there is a mass in the sinus cavity" and that he never saw anything like this - he said he was going to do a biopsy and then decide how to handle, that this was a possibility that he may have to be referred elsewhere.

Biopsy was done on 2/19 and it took almost a month to get results -- they kept sending it to different labs since they couldn't diagnose it. Finally in March they told us that it was a tumor in the sinus cavity but we were being referred to Mt Sinai in NY as our local ENT said this was way out of his league. I asked him if the tumor was benigned or malignant and he was fairly vague and just said "all tumors are considered malignant since they don't belong in the body". I guess that should have been my answer - but it wasn't one I wanted to hear so I guess we both put it aside.

Ok, so 2 days later we meet with the surgeon in NY and tells us that my husband (fiance at the time) needs surgery to remove this tumor so we look at him and say "Ok can we schedule it for June" and the surgeon looks at us and says "Um...cancer cannot wait you need the surgery as soon as possible" We're numb and say "But we're getting married in 9 weeks" and he said "Well that's why we need to do it next week to give him 8 weeks to recover". Ok we're are totally numb.

So, now in addition to finishing all the last minute wedding stuff that I didn't do in advance I am now coordinating surgery with wedding.

He had the surgery exactly 2 months to the day of our wedding - they cut up through his upper palate, took vein and skin from his arm to recreate the palate then grafted skin from his thigh to his arm. He recovered nicely. He was still getting bad headaches so he was sent for a CT one month later and it was clean. Turned out he had wax build up in ear that caused the headache.

The wedding was awesome and we left for our honeymoon - 2 days before we were due home he had an uncontrollable nosebleed which lasted over an hour. The next day again - bad nose bleed and he felt like his nose was "stuffy" -- I emailed the doc from the ship and he told us to come into the office on Monday. We got home Saturday - still nose bleeds all day and more stuffiness. Sunday morning his nose was double the size. We went to the Er and they confirmed a blockage. The doc felt there was grandulated tissue from the march surgery that was coming out and causing the blockage. They scheduled surgery for 2 days later to open this up.

Well, the doc came out of surgery to tell me they did not open the blockage as the minute they went in discovered cancer cells and had to stop until they knew what they were dealing with -- so.....PET scans, CT scans, chest x rays, etc. All confirmed the tumor reappeared only in the nasal cavity -- did not spread anywhere else thank goodness.

Had surgery exactly 3 months from the first (one our one month anniversary). They got the entire tumor out -- again through the palate and they removed his entire upper jaw and took bone from his leg to recreate the upper jaw and then skin from the thigh to graft to the leg. He's now healing good and is on a soft puree diet.

We are hoping to start chemo/radiation on the 20th. Due to the unusual nature of the cancer -- he has a salivary gland cancer but it's not in the mouth - it's in the sinus/nasal cavities which has never been reported, they are going to treat him aggressively and have him in the hospital for 5 days doing 2 treatments of radiation per day and on a 24 hour chemo drip. He will then come home for 9 days and then go back - for 5 rotations.

We're hoping for the best - it's a double edge sword since this is so unusual we have the best doctors in the country reviewing his case, but at the same time no one has any answers for us.

newbride
I wish you the best of luck. Like your husband,mine has a weird cancer as the site of primary could not be found. One minute they call it lung cancer,however,with it also being in colon,the folfox treatment is aimed at colon cancer. Like you said,just when you think you have the answers,you have none.
Had we not gotten our Medicaid last week,he was facing five day stays as well,however,now with insurance we are only doing the 5 hour push in outpaiten/short stay,and home with the two 23 hour drips,which home infussion will come in on THuresday and DC his line.
You asked about our age,I turned 39 on June 29 and Sean turned 45 on July 5th,we are in Michigan.