Topic : Living with Chronic Pain

Hi Dianah,

My husband and I went to the doctors yesterday to get the results of the tests. I was a wreck but was trying to keep myself in check and I think for the most part I did a great job considering I tend to be on the emotional side and going in their was especially hard because the last time I went in that Doctors office was two years ago this month when I had found out by the nurse practitioner in the open space near the nurses station with visitors all around that my mom had cancer again to which she replied after seeing the shock on my face-"-oh, I'm sorry you didn't know? "so my sister in law and I headed to see the doctor who is now my husbands doctor to find out what was going on and he sadly had to tell us that she did have a mass and at this point there was nothing that could be done so all of that flooded back to me so something that would have been stressful anyways was complicated by other thoughts going through my head and I was praying that the doctors wouldn't come in and say the same thing about my husband....He said that all of the tests came back negative and that he was hopeful that things would be ok...he is ordering a wide-margin removal of tissue around the original tumor along with a sentinel lymph node biopsy which is normal protocol and gave the impression that if that came back negative then almost like it was problem solved and that is what got my antenna up ,because from all I read this type of rare cancer does well with radiation as a back up to preventing recurrence which is know to happen often in this type of cancer so that bothered me. As much as I would love to just sit back and say problem solved isn't this great ,my gut is telling me that it isn't going to be that simple and other measures need to be taken...one of the things that the specialist had mentioned was that this type of cancer was NOT like other skin cancers and can't be treated as such. I mentioned to him that I would like for my husband to be referred to Dana-Faber and that I would like for him to work with them and for my husband to have as much as possible done here with him but that for him to be updated on the latest research etc....he said he would refer him but that in the end he feels that they are going to tell me the same thing that he is....good, I hope they do but I need to find out from somewhere that deals with this on a more regular basis....he did a great job with my mom and I like him as a person but I just need to have all of the T's crossed and the I's dotted and then at least we know that we did the best we can to fight this...your right we have the greatest hospitals and doctors in the world just an hour away and it would not be prudent to not take advantage of that. Please continue to keep us in your prayers. I am grateful that the tests came back negative and I hope all of the other tests that he has to have done come back the same way..this next procedure really will tell the most of all...we are going to my cousins tonight for a Christmas party and I am looking forward to it...need to try to keep things on a positive note and enjoy the good times as much as possible....take care.

Hi Prof,

I am keeping you in my prayers everyday and  I will be thinking of you on Monday. I just have this feeling that this is the start of you getting things under control and the beginning of you healing. I know that you have a tough road ahead of you but I pray that this will be the turn around you need to get the infections out of your body so that you can heal. If you read my reply to Dianah things went well with the results of the tests that the doctor ordered on my husband ,but one of the things that bothered me was that it appeared that he was treating this as a normal skin cancer rather than something that needed to be treated in a different way. I really like him as a person and I know that he thinks he is doing the best by my husband but when he made the comment that if the slnb came back negative that other than follow up cat scans he feels that nothing needs to be done and that thought process is in contrast from what I have read about radiation being a good follow up to surgery in this type of cancer so my husband is calling the office on Monday to be referred to a doctor at Dana-Faber to get a second opinion. He thinks they will tell me the same thing he is saying and if they do great but at least then I will know we did everything we could to get as much info as possible to fight this...going into Boston can be a nightmare because of traffic etc. but I would much prefer that then being comfortable here but maybe not getting all of the help that we can...Please keep us in your prayers and I will keep you in mine. Think we both have a bumpy road ahead of us for awhile...wishing you nothing but good wishes....please let us know how you make out..take care.

Love,

Carol

It's officially winter here today...we finally are getting some snow, and the temperature is dropping about 1/10th of a degree every 5 minutes...down to 16.7 degrees farenheit...and dropping...we are supposed to get down to 11 degrees tonight, and 3 degrees for tomorrow night, and for the next few days, with highs in the teens...burrrrrrrrrrrrrr is the word!!  The roads are SOOO slick...we're shutting off our alarms and staying home from church tomorrow...we just don't feel like risking our lives to get there...there was a 13-car pile-up on a local road today...and this road isn't even one that is well-traveled...not sure why so many cars were on it to begin with...it has a lot of sharp curves and is on a hill...and when John took our k kid son to work today, there were cars in the ditch everywhere...

I'm so glad we had our brakes done yesterday...when I had the tires rotated, they told me that the front brakes were bad, and that they needed to be done ASAP....so I scheduled for yesterday...just in the nick of time, I guess...I'd hate to be out on slick roads with bad brakes!!  When I went to the car fixing place, they got the whole thing disassembled, and then discovered that they had ordered the WRONG brake pads...so we had to wait an additional hour while the parts truck returned to town and came back with the right ones...so I missed out on going to youngest son's school...I was supposed to be helping in youngest son's class...but never made it because of the delay in the brake job...

Scouts and band are keeping me plenty busy...I am still doing the spreadsheet for the band silent auction...mostly done...just waiting for the last few items to be picked up and paid for...and the Boy Scouts and parents were all certified in Basic First-Aid and CPR today...a friend from church came and put on the class for free...he's a certified instructor for the fire department.  We finished with that about 1 PM, and at 3 PM I had to be at the school to help set up the concession stand for the high school basketball game...the band sells food for the game attendees to eat...yum!!  And we got to take home the leftover chile and nacho cheese sauce....yum yum!! 

Two days per week, I've been helping in the after school beginning band practice...the kids can stay after school for extra help...I've been helping some of the trumpet players...and it's fun to see their progress...

Christmas break is so far scheduled to be pretty quiet...and we don't even have our tree up yet...never got lights put up outside...because John was ill last weekend and the previous week...now that it is snowing, I don't think it is a good idea to be climbing up and down on a ladder....but I would like to get the tree up this weekend...

Christmas this year will be pretty skinny....all of our "spare" money went into the brakes on the van...so I'm thinking one $10 gift for each of the boys, and we'll get out the remote-control play set, as has become an annual Christmas tradition...and our traditional all-day-buffett...no guests...just us...I asked the kids which would be more important...gifts, or the traditional buffet feast...they chose tradition...besides, it's not about the presents...we already received the greatest gift of all...2008 years ago...

K kid's birthday is this week...I asked him what gourmet delight he is cooking us for his birthday (afterall, I did all the work 20 years ago...it's pay back time...LOL)...actually, I'll be cooking something delicious...budget-delicious, that is...gourmet hot dogs and ketchup!!  (kidding...sort-of)...

Our k-kid son has a skewed view of pregnancy...a co-worker of his is pregnant, and he commented that she "should be home in bed"...I explained to him that not all women have to be on bed rest for pregnancy...I had pre-term labor with all three of my boys, and was put on 6 months bed-rest with the last two (oldest one was born 6 weeks early, following 6 weeks of absoulute bed-rest to prevent him from coming any sooner)...so he just assumed that ALL women were supposed to be in bed for pregnancy...quite the opposite is true...many women can keep working in their jobs right up until the day of delivery......I just thought his attitude was interesting...he was complaining about her "moodiness'...I told him to be nice and cut her a break...go out of his way to get her what she needs...etc...

I guess a 20-year-old boy (and I emphasize the word BOY)...still has a lot to learn about life......a few years experience will give him a different perspective...I hope...

Our youngest son made the honor roll...and the school NEVER sent me home a note to let me know to be there to see him get his certificate...I'm sad about that...I always make it a point to go to the kids' awards ceremonies...

Middle son needs to get busy on his solo for the Solo & Ensemble festival...he has to fill out the paperwork before Christmas break...he has the music for "Trumpet Voluntary"...his other choice would be a song that I wrote, but I don't have it down on paper yet...because I've been so busy...it is a Russian-style classical piece...Youngest son, a beginning saxophone player, wants to to Ode to Joy...I did an arrangement of that piece for middle son to play a few years ago...he'll probably use that one...he will be the only beginner from our school district to be attending this year.

It's already down to 16.4 degrees...and still falling...I put the heaters in our ponds to keep them from freezing over...the neighbors' cats drink from our ponds...might be the only "thawed" water in the neighborhood for them to drink...our other option would be to remove the filters, lights, and pump, and just let them freeze...

Dianah...glad to hear you're not moving...I know what you mean about having lots of stuff...we have accumulated way more than we would want to move...besides, we like it here...although, when I get up on Monday morning and have to get the van started in 3-degree weather, I might be wishing for a Florida vacation or something!!  Actually, though, I'd take the cold and snow over a hurricane or earthquake ANY day!!!  At least we can stay indoors and warm....I think I'll make a pot of hot soup for dinner tomorrow night...I found a delicious recipe for Butternut Squash and Apple soup...looks really good...might just have to try it!!

Prof...with your surgery is coming right up, I'll continue to pray for you, and keep you in my thoughts...I wish I could bring you some of the hot soup I'll be making...I just hope that your surgery has a good outcome...I'll stay hopeful for you...I hope they let you have your computer in the hospital again...at least for a short up-date...

So, now it is almost 1 AM here...with the temps still dropping......and that stupid "side bar" on the screen is really annoying when I run the mouse over it, and it expands involuntarily, and most unwelcomely...I hate stuff like that...those advertisements are WAY to obnoxious!!  Has anybody been over to the new beta boards yet??  I'm waiting until they block access on this site before I move over there...I don't like change...so I'll hang on to the "old" ways until the last!!!

gotta try to get some sleep...and get John off the couch and into bed...his LOUD snoring is getting annoying...time for his CPAP machine...and mine!!  Everybody have a good night...Becky

Prof,

I will be saying extra prayers for you tonight and will be thinking of you tomorrow and sending you all of the warm and best wishes ever especially as 3pm nears. Don't know why but I have a strong feeling that things are going to work out for you this time...gut feeling. I know you have so much to deal with but like you said your doctor is the type that doesn't settle and will keep working toward making you a healthier person...take care of yourself and we will be here when you are well enough to write us ..take care.

Love, Carol

Prof,

I sent you a response and it just disappeared into cyberspace. Just wanted to let you know that I will be saying extra prayers for you tonight and will be sending you warm wishes tomorrow at 3pm. I know you have so much to deal with but I just have this gut feeling that things are going to work out for you this time. Your doctor is the type that won't settle until he gets you back to a healthier you. take care of yourself and we will be here when you are well enough to write us..take care.

Love, Carol

PRAYERS PRAYERS PRAYERS

AIR HUGS AIR HUGS AIR HUGS

I'll keep you in my prayers tomorrow for your surgery...and tonight...before your surgery...I hope all goes well...

Becky

Monday morning...back to another week...last week before Christmas break for the kids...

Prof is probably in surgery by now...I hope all is going well for her...I hope that she can have a computer at the hospital again...it sounds like she might be there for a few days...

Dianah...burrrr is the word...we are now 14.4 degrees...and it is expected to get to minus 3 tonight...some parts of the country are predicted to have minus 25 for their overnight lows...burrrr...I can't imagine...are you in that area that gets so cold?  John was offered a job in the Chicago area a few years ago...you couldn't pay me enough to live where it gets so cold!!  We visited my brother there when I was a kid...and it was SO cold, I could hardly breathe...and my feet were so cold they went numb, just getting from the parking lot to the museum...burrrr!!!!!!  How are the horses?  Did the move go smoothly?  (I hate moving...so many boxes, so little time...)  Although, we should pretend we're moving and have a moving sale to get rid of our excess stuff that is just taking up space...and now we have oldest son's stuff taking up more space than we have room for...he is making zero progress in his room, where he is supposed to be putting his boxes...grrrrrr!!  He isn't even out of bed yet!!!!  I'm getting the water squirt bottle next...or maybe some marbles that have been in the freezer!! 

Carol...even though I haven't posted to you, I have been thinking of you and praying for you and your husband...cancer is such a scary thing...you certainly have the right to a second opinion...when I had my breast cancer surgery, I couldn't take the chemo drug because of my heart arrhythmia...it was to ablate the ovaries, because my cancer was Estrogen Receptor Positive...and HER2 positive....but they didn't feel that radiation was necessary because the sentinal nodes were negative, and they did a radical mastectomy, and the surgeon felt that all of the cancer had been removed...I now have follow-up mammograms every 6 months, and a breast MRI every year....

My sister-in-law had throat cancer, and she gets a PET scan every year....she went through chemo and radiation...I'm not sure why the treatments differ so much from person to person...but having had cancer, it is like waiting for the other shoe to fall...it is a constant worry....so I know where you're coming from...it is very hard to "not think about it"...

I've got a busy day on the docket...and laundry on top of that...but tomorrow, I have nothing scheduled out of the house...just LOTS and LOTS of laundry...two mountains...ours and the kids....since oldest son crashed his car, I haven't had a full day at home...tomorrow will be a treat...even though it will be filled with laundry...it will feel good to get caught up....

Well...first on my list is to practice my song for the pagent at our church next Sunday...and songs for the Christmas Eve service....then a shower, and I need to go to the school to help in my youngest son's class for a little while...then off to the groceries...it will take me over an hour to get to town...because of the icy slick roads...some crazy people think they need to pass me...the ones with 4-wheel drive...they can go faster than those of us with 2-wheel drive...what they don't realize though is that they can't stop any better...that's why there are so many cars ending up in the ditch!!  Prof is right...stay off of the brake pedal on the ice....but I do tap the brake pedel a little to make the brake light come on when somebody is tailgating...I want a bumper sticker that says "I brake for tailgaters"...or maybe a reader board sign that comes on for tailgaters...that says "Proximity Alert!! Prxoximity Alert!!"  Or maybe a sign that says "Back off if you don't want to meet my lawyer!!"  Tailgating is so dangerous...and so annoying...they can't intimidate me into speeding up to drive faster than I feel it is safe....anyway...

Off to my day....everybody have a good day today...and stay warm...stay well....Becky

Well...gotta get to it....

I just wanted to tell everyone how I've appreciated all of the prayers and thoughts during this most difficult time in my life. I really don't know where I am in my life at this point. I'm just hanging on from second to second. I'm lost without my better-half, and I can't seem to bring myself to say good-bye. I should have had funeral arrangements made some days ago but I just can't do it.

I am sooooooo hurt, paining inside and it kills me everyday to know that my husband is never coming home again.

Dianah, Prof, Morgan, and Pickles thank you from the bottom of my heart, you guys have been amazing friend.

I love you all,

Lashy

Good Morning Everyone

Were are starting to warm up here.. The wind chill this morning is only -18..... Air temp is -7.....

My sleep study went well last night.. I guess I hit the deep sleep mark and at 1 AM the Gal came in and put the sleep mask on me.. It was hard for a while, just different, but I was back to sleep in no time. She said the good news was that I did not need a high amount of air....

The Glue in my hair is the only down fall.. Will wash it out here after I have coffee with all of you.... She told me I could take a shower and I was like, No Thanks.. Going out with wet hair and a cold car was not my idea of a good time.....

Today my Dad has been gone 10 years.. Last Month on the 16th I put myself into a anxiety attack thinking it was the "date".. it was funny after my Mom told me.. "Diana, this is Nov, your Dad passed away in Dec"... now that was a good one on my part....

So today I feel calm about it.. I'm Okay with it...

Lashy...Wonderful you posted and remember, you don't have to thank friends... We Love You and just know you are not alone...... HUG HUG HUG....

Becky... Great to see you this morning...

Yes, we are in the deep cold here.. Yesterday we hit -25 and there was no school due to the cold.. Today the buses are running two hrs late....

I just got a call from the gal I clean for today and their water pipes froze and I guess it's a huge mess around the house... and they live in in a reg home also.. So I have the day off... Yeah......

Too funny about you and Chicago.. the thing about there is that they have the humidity along with the cold and it's a "bone chilling cold" when you add the humidity.. The good thing with us, we are a dry cold.....

I had jury duty yesterday and during lunch break, I ran to the feed store and bought another 150 pounds of cubes for the horses.. I'm now up to over 100.00 bucks.. but that's okay.... When I pull up, oh, they just talk and talk to me.... poor babies.. had ice hanging off their eye lashes and whiskers yesterday...

We still have at least two more loads to make over to Mom's.. but waiting for her to get things put up, so there is room for more "stuff".... Bless her heart... this is a good thing for her and the new home is so Nice and warm for her...

The kitchen in this place is just AWESOME.... I love it.....

Becky, take care and sending you... HUG HUG HUG......

Carol.... "Yahoo- Yippy-Skippy" and the good news..... Oh, I bet you are breathing and sleeping much easier now....

I so agree with Becky, second opinions are a Good Thing to do... And she speaks from "experience"... I remember when she was having surgery for her breast cancer. Oh Man.. she's one tough lady. And she is also very smart on checking things out and re-checking her options.....

Did you experience any problems with the "big storm" in your area??? I was thinking of you while I was watching the news.....

How is the neighbors Mother doing???

When will your trip to Boston take place???

I am so "happy" for You and Hubby... I know this has been so tough on you and the waiting games are the worst..... Sending you... HUGS HUGS HUGS

Okay...  As I was trying to head out the door last night, had a toilet over flow.. so need to get that mess cleaned up and going to work on the house today, since I am "off"......

I will also spend two hrs over at Moms and help her get the "high" parts of the kitchen cleaned...

I'm thinking meat-loaf for dinner. have not made that in years and sounds good....

Prof should be in Happy land this morning. I hope things went her way, for once and they were able to just clean things up and leave the shoulder parts in there.....

Let's all take a minute and send her our "hope and thoughts" for a speedy recovery ...................................

Sending all My Love and Hope for today... Love Dianah

Hi Lashy,

I'm Carol and I am new to this board. I just want to tell you how sorry I am about the loss of your husband. I know your heart must be breaking. Please know that I am keeping you in my prayers. Take care.

~Carol~