This is going to be shorter then I want but I really really want to get some thoughts down this week since it's the first full year since I got the original news.  I of course have a lot of running around to do but if I don't do this now I don't see myself being able to write in a couple of days (U of P tomorrow, Joe and I are going to the city tonight and spending the night and finally seeing my girls from work:).

I would just like to share some thoughts in how the past year has gone, where I was at mentally that first year to where I am now.  Or whatever the hell else I feel like writing, lol.

The official one year day was Monday but if you go by dates then it was yesterday - I went with yesterday as that first Monday I think we were numb.  I really knew the week before (a day or two before my 42nd birthday) but we needed to wait for the "official" confirmation and basically what stage so that held out the diagnosis another week and yeah was not a good week. 

In this past year I have I would like to think found myself, I went from being la tee da about life, never really thinking about the future except in the terms of seeing my daughter get settled and watching my grandsons and nieces grow up and then occasional thought of losing my parents (as we get older so do they and as this point we watch them age before our eyes).  So you come to as best of terms you can in knowing that soon (well not SOON but you all know what I mean) we will have to bury a parent... yet in this past year I went from OMG I can't lose them to OMG can they survive losing me... morbid either way right...

I have gone from not really believing in god (well I believed in something just didn't know what it was), to questioning WHY to not really liking god at all to ok, god give me all you can to now finally acceptance.  It's his will not mine and if his will is for me to go through this, for my family to have to deal with this well I guess there is a reason and someday we will all find out that reason.  Maybe, just maybe there's even a small part of me that thinks I can be that miracle, if I'm good enough, if I'm kind enough, if I have learned enough will he let me live???  I don't know but I do know that now he is a part of me everyday and he gives me strength to deal with whatever the outcome my be.

Anger... hell yes               Sadness... hell yes           WTF.... hell yes              WHY ME..... hell yes              these are questions that still hang in my head every single day, I wonder if they ever go away?  I talk to someone (counselor) occasionally and I let myself cry occasionally I know don't give a crap what my house looks like, I even try to encourage my dad to not care :) I have become flighty scatterbrained and oh good lord forgetful (I have become my mother) I also have known what true love; true family and true friends are all about.

I have heard and had the privilege to see and be apart of one of the most amazing benefits put together.  To see over 400 people band together to support me and my family well that alone will take me to the other side.  I will never ever be able to express what that meant to me, the outpouring of love and kindness from people I (we) have lost touch with that now because of cancer are again part of my life is truly a blessing...

I was given a beautiful symbol (my website, my design, my own clothing line loll and even my own tattoo's) from two girls who are and always will be the cousin's of my heart.

I am even closer to my family (is that possible???) I learned the value of being with my husband and fighting to stay together as there is no one I would rather have by my side... I also know where the issues are and what we need to do to get through one of the most difficult times we have ever faced.

I have learned to cherish each and every moment I can with those around me.  Is there still hurt, is there still stupid fights, do we still say stupid things YEP but now we try not to let them fester, we try to say what we feel instead of keeping those feelings in.

I have learned true pain... yes if you haven't cried and don't want to cry I suggest you stop here...

True pain to me is missing the rest of my daughter's life, true pain is dying before Nathan and Kylie know who I really am... true pain in not seeing those 3 amazing children grow up to be part of a truly amazing family... True pain is watching your family watch you hurt, knowing that they would do anything to take that pain away and knowing that there is nothing they are anyone can do.  I can deal with everything else except all of the above.

I still have a long way to go, I will never be healed of cancer but at least I am on the road to healing of the heart and without all of you in my life I would not have made it to that point this past year.  Cancer has taught me a lot, a lot of myself, a lot about who I am as person, a lot about my family and a lot about those that surround me.

So while I sit her and continue to say "Fuck You Cancer" I also in some way have to acknowledge where it has taken us all, because without it I would have lost some very special relationships.

Love & Peace to each and every one of you who have been a part of my journey this past year.  I am truly blessed...

Sue

In just one day everything got worse - god, I knew and felt everything starting again but we finally made it to my parents to see them for their anniversary and I was sick as a dog for me all side effects but then Joey is sick, my mom sounds like crap again.  Man, WTF is this all there is as we get older?

So by the time I got home from visiting, I pretty much went right to bed and sat there and cried for the next hour.  I am barely one week into trying to put together the best wedding possible for my only child knowing that this is going to be one of the last memories she will have of me and now I get sick again... and truthfully to me at least it's the medicine making me so sick.  If I can get another couple of years feeling good isn't that better then a couple more years feeling like crap???  I have no energy level at all, I am bruised from head to toe, I have blisters on my feet and now starting on my hands, I can feel them starting in my mouth and throat again (though I am happy that this time it at least left my mouth and throat for last) at what point do I stop taking the medicine?  I think my Dr said she doesn't care, that if she needs to she will constantly let me take a break but how do I deal with all of this in my head?  One week I'm sick as hell, the next week or so I get a medicine break so I start recouping and basically by the time I feel 50% better I start all over again, back on the meds and within 3 weeks I start feeling like shit again.  How much mentally can a person take of that?

I keep telling myself I just need to make it to June 10th that's my next appointment and then to mid July for the tests but after last night and knowing everyday it's just going to get worse and worse do I force myself to make it to the 10th or do I call now and ask for a break again?  This is so freaking frustrating...

And what's even worse (and sorry just being honest) is hearing how good I look - I keep trying to say "good thing the tumors are inside, could you image how I would look if you could see them" LOL personally I find that very funny but sad to say I think most people will find it rude unless you get me and my family's type of humor.  But really I just had to vent on top of everything else that hearing how good I look (and I think most people on treatment will totally agree with me) does not help at all.  Please just say, it's good to see you and to see that your still fighting, or it's good to see you out and about and that you are still in our thoughts and prayers.  I love you all and I really hope I didn't hurt anyone's feelings by finally saying this :) 

Ok I'm done for today, I'm sure as the days get worse I'll be back on complaining. 

And check out the picture, one of the tat design's I'm thinking of for myself 

Love & Peace

Sue

it's me... now it's really been a long time since I wrote and as usual sorry to those of you that really only know through here how I am doing.  I just had a hard time recouping from the trip so there just wasn't a lot of energy to get on the computer and unfortunatly what ends up happening is once I do get on here I never seem to be able to get off so I start to avoid it :).  I have been wanting to write so bad to check in with everyone but it's just gets overwhelming, I'm still trying to teach myself how to rest and then do something productive (clean, write, call people etc... and yes I am now officially horrible at doing all of those things.)

Joseph's and Erin's wedding was very nice, it was great spending time with some very special people that I personally don't get that type of time with.  Joseph looked very handsome and Erin was quite beautiful and the kids well of course you all know they were the best looking kids EVER...

My mom and my Aunt Mare surprised me with getting the "Sue" tattoo, it was so overwhelming and truely amazing to have them have shown their love and support like that.  Then afterwards my very dear friend and "sister" Lori asked me if she could get one.... hello - don't you realized how honored I am that anyone would want to do that???  Of course you can, so Lori and Keirstyn got theirs (Lori did the "Sue" and Keirstyn did the ribbon.  So now from what I am hearing there are going to be a couple other's coming.  There is a beautiful ribbon one that I am getting as soon as I can (I can't now on the meds, I think it's a bleeding issue) but if there is anyway I can get it I will be.  I'll show you all a picture of that and then I'm getting my pictures from the wedding later today so I'll post my mom's, aunts, Keir's and Lori's.

Overall I'm doing ok.  I'm very very tired.  I feel the medicince starting to effect me again.  I did get some really bad blisters on my feet and can feel two starting on my hands and I think my mouth every day is getting more sensitive but not so bad that I can't eat.  I have to watch what I eat as I can't tolorate any type of spice at all (which really sucks, as that's been my whole life) but then again, so has eating so I'll take what I can get ha ha.

I go back to U of P on the 10th of July so that's the goal now, just to be able to stay on the medicine until then and then from there to make it until the middle of July as that's when it will be 12 weeks again (doesn't matter that I had the three week break) so they will do all of the scans again.  Pretty much that's it for now, I'm just taking it as usual day by day.

We are now in the midst of planning keirstyn's wedding (Oct 30, 2010) the ceremony and hall are booked.  Now it's trying to figure out who we can invite and who sad to say I can't.  I wish I would have thought about it, we should have had her getting married at my benefit then everyone I know and love would have been there (haha - Keir would have loved that :).  I'm excited starting to plan it and really I hope it will give me something to work for, something to focus on, maybe I'll get more energy and will be able to function a little better. 

Nate's doing awesome, getting so big.  Stewie (the puppy) is finally potty trained and now quite a joy for now, though since coming back from Florida I'm ready to beat him.... he now thinks he should get up at 7 am and we should both go sit outside - ok I did this the first couple of mornings as the weather was so nice, well this dumbass dog thinks we have to do it everyday now... WTF... I miss my sleep and cuddle time with him.

Love & Peace

Sue

As of this past wednesday I am back on the medicine.  I was hoping to wait until after the wedding but I'm guessing they want me on it for a week before I go for my normal visit to U of P which is this Thursday and which also happens to be the day we are leaving for Florida.  So needless to say I am stressed out over making our flight and having things work out perfectly so we can get the rental cars and all of us in them together without having someone wait behind for me and Joe or having to come pick us up (then on top of worrying about the luggage, Joey's tux, Erin's Dad's tux... ugh the whole kit and koboddle:)...

Overall I am doing ok, I feel the meds kicking in already with the big "D" starting and the tiredness hitting again.  Seems like it's working faster this time though I was off so much longer.  I just need to make it through the wedding, I want to feel good for that, to enjoy it and celebrate with everyone.  I was feeling awesome being off the medicine so I just want that feeling to continue over the next week or so.  As the wedding is approaching and during the past couple of weeks I've been a little despressed that I backed out being a bridesmaids, I knew I had to as there would just be too many things I couldn't or wouldn't be able to do, and then heaven forbid not being healthy enough to even attend the wedding let alone be in it, I just couldn't take the chance but now of course it's here, I was on a medicine break for the past 3 weeks, have felt so goodd and so now I feel sorry for myself to not be included.  Oh well I know I had to make the best decision at the time so now I just need to be happy with that decision, to know that I'll be there to see Joe and Erin get married, I helped leading up to it as much as I could in the months leading up to their big day and now in the days beforehand at least I'll be around to help with the kids while everyone else does the bridal party stuff - and lord knows I'm better at that part anyone :)

Keir and I checked out the other hall for her wedding so hopefully that will be finalized too as soon as we get back from Florida.  She can make the 6 months beforehand so they will be able to get married at Holy Trinity and that really really makes me happy.  Now we just need to finalize everything else, start planning again as soon as possible so we can take advantage of my feeling ok right now too.  At least I can get it all started (haha pay for this part) and then Keir and her bridesmaids can pick up the next part.

Stewie is finally doing good, fully potty trained, still can't get him to bark to go out but at least now he will do a little cry at the door so when were awake it works perfectly just doesn't fly so good at night but thankfully for the most part he is on Joey hours so that does help a lot.  Nate has started daycare 3 days a week and it seems to be going real well.  He made a couple of drawings and did 2 crafts for Keirstyn for mother's day so that was pretty awesome to see her have/get. 

I think that's about it, I have just been running around trying to do things that I can't do when the medicine kicks in strongly.  I guess the hope is that the break will have given me some time to get healthy (clear up the nutrient issues etc...), this is the last time on it if something happens again, I should already be off but since it appears to be doing something I think they want to try one more time.  And I think that one more time is all I am willing to try.  Feeling good these past couple of weeks certainly made going back on the medicine a lot harder and made me fully realize some important decisions I'll have coming up so I really need to decide what path to take if I get sick again.  But for now I am just going to try not to think about it too much, I'm just going to go enjoy the time in Florida, enjoy seeing my brother and Erin get married, to be a part of watching that cycle finally close exactly the way it should have (as a perfect circle) and I'm looking forward to seeing the wedding through Kayla's eyes - watching her parents get married...

I hope everyone is doing well.  Please know that you all are in my thoughts and prayers.  I miss seeing everyone and hope that after the wedding I can get back in touch with some of you.

Love & Peace

Sue 

Again, feels like that's what I always say anymore.  How about I misssed being able to write :)  I miss talking to everyone :)  I still am trying to get back to "normal" so I'm sorry that I really haven't been in touch with anyone (or even everyone).  While I'm doing better with the virus I was/am still having issues with the mucusitis so that's been a drag to me, it's a little hard to talk as my mouth is still a little swollen and quite truthfully the last two days' I'm been feeling sorry for myself.  Which I know is perfectly normal and really really doesn't happen that often.  I think I was looking forward to the medicine break again and getting to eat again that when I still don't (or can't eat) I get discouraged.  I just wish I could taste things or that everything didn't have such a metalic taste to it.  I know I need to eat especially to gain nutrients back from when I start the meds again it's just hard...  So anyway I had almost 2 over easy eggs today at lunch with Kayla so that's exciting (hahaha) but believe me it really is :) 

I had a great time with her at the movies though I think the movie is too long for kids and doesn't keep them interested that long (How to train a dragon) it was cute just could have been shorter.

What else is new??  We have the wedding coming up so I still need to go dress shopping which I hope to do tomorrow or Friday.  Anyone interested in going to King of Prussia mall with me in the early afternoon either of those days?  Kind of sucks being home by yourself when everyone else is working.  You would think it would be fun but take it from me it's really NOT... unless of course you have good health and loads of money then maybe it will be fun.  But anyway, if anyone happens to be off and interested let me know - would love the company and the help picking out a dress...

I also started to look around for Joe and I to do something for next weekend but I forgot it's mother's day SO now I decided that Keirstyn and I are going to do something overnight.  I think were going to go to Roy's (yes of course Roy's) for dinner Friday night and then maybe to a show but I know for sure to a couple of bars and no driving just a real nice hotel overnight to get away from it all even if again it's just one night.  Keir and I deserve both deserve and need it...  and then back home for Sunday so I can do my mother / daughter lunch or dinner and a movie with my mom.

So that's all for now, got to start planing out little getaway.  Drop a line when you get a chance, I miss hearing from people.

Love & Peace

Sue

OMG as you all can imagine as I know most people of heard by now that the news was good yesterday and I am what's called "stable growth".  I actually had one tumor in my neck area shrink and another tumor is almost completely dead.  I have NO new growth and the stable overall growth means that none of the tumors have grown beyond the protocal's limit (they are growing but at ha-ha an acceptable rate).  So what this means in laymen terms is that I will stay on the medicine (and as long as the side effects stay within an acceptable range) for another 12 weeks and then I get all of the scans again.  They won't increase what I am taking, they did determine that the higher doses were too toxic for me so as long as everything stays like it is now I will stay on the 75 milligrams, I therefore can't get anymore breaks over the next 12 weeks otherwise I'll be taken off the drug so here's not to hope that the 75mg stays the way it is.

To finally come home and celebrate yesterday and then to see coworkers/friends and my two cousins today and celebrate with them just really felt wonderful. 

 I wish I could see everyone and do that same but unfortunaly I can't.  I am functioning a little better these days so at least I can get out more and see more people and I do plan on taking advantage of the nice weather and visiting more often so hopefully I'll see more of you soon.

I also will try to get back on here to keep in touch more, it really did get crazy for a while and between how I felt and then if I was feeling good I had to catch up on everything else that it was hard to find time to get on the computer.  So I hope to change that and at least do a weekly blog it does help me feel better to get some of the feeling down on paper, it's a large part of keeping my head together. 

Love & Peace

Sue

why does it seem like time can run backwards OR that when we want time to hurry up it appears to have slowed down?  I feel like it has taken forever for tomorrow to get here yet I don't want tomorrow to get here either.  I know that I am supposed to be positive but it's waiting like this that makes it so freaking hard.  I know some of you are waiting as (not so patiently as I am) and to those of you who are - well at least it's finally almost here and by noon tomorrow the results will be in.  Thank you to those who have helped me get through the last 72 hours and thank you to all of you who have been here supporting me for the past 12 weeks (yes while at times it seems like forever, it has only been 12 weeks since I started the medicine).  I love you all and no matter what it's god's will so here's to either another 12 weeks of medicine or to starting that bucket list by May 1st.  (LOL though I did get my first real item on it, my hubby surprised me with a grand adventure, a Hot Air Balloon Ride, so excited).

Love & Peace,

Sue

Just wanted to at least drop a line and wish everyone a Happy and Blessed Easter.  Each and every one of you are in my thoughts and prayers.

Found out that I will be going to U of P on Tuesday and Friday to begin getting the MRI's and catscans done.  When I go back to meet with my Dr on the 15th we will have all of the results.  So by the 15th we will know if the medicine has done anything or if at least kept things stable.  I of course will let you all know.

So next week will be very busy.  I have been wanting to write but with the family here (and now gone) and then taking advantage of the weather and feeling better I really haven't been online much.  I'm sure you all figure me especially knowing that I have been feeling better the past week :).  Things are starting to pick up again with the side effects but so far know where near what they were.  If they stay around this level then as long as nothing has changed I will stay on the meds for another 12 week trial.  So here's to getting through the next week and a half. 

I will try to drop in again during the next week.  Just know that if I don't I think about and miss you all.

Love & Peace,

Sue

I went back to U of P yesterday and restarted the medicine after a week off at the lowest dose (75 mgs).  I didn't really get much of a physical or mental break as I really only started to feel better Tuesday afternoon, ate real food for the first time in 3 weeks and was extremly sick afterwards so I took a huge step back that night mentally and had a decent day on Wednesday (but did go back to only eating soup) and then had the appointment yesterday so if you count 1 day as a break then I guess I got a break (lol).  I really was not sure if I was going to start the medicine yesterday as overall I really at this point was thinking very emotionally and did not think mentally I could handle going back on without having more time to heal.  I knew I was going in with one question before I made the decision to take or not take the medicine and that one question was "This break and the one I had when my blood pressure went up, what do those - in total 2 weeks- do to me getting the first set of scans/tests completed to see if this medicine is doing ANYTHING?"  I knew that originally my first set of tests would be the middle of April, did I push everything back 2 weeks cause of the "breaks"?  Well when the Dr. told me that NO everything still goes with staying on track, that the middle of April I still get all of those tests then I knew I could do another 3 weeks of the medicine :).  No matter what I just have to get through 3 more weeks... if I have made it this far than basically I can live with knowing that in 3 weeks we will at least know something...

it was a very long day at the hospital yesterday, as usual nothing seemed to go right but I am happy to say that because I have the ability to swallow again and that the sores in my mouth are so much better I can at least eat real food so Joe and I finally went to dinner in the City and we went to my favorite place Roy's and I had the most wonderful meal I have had (well since I was there last right before treatment) so no matter what I will NOT complain about not being to eat again over at least the next 3 weeks.  That butterfish will keep my mentally satisfied through the remainder of this trail and I have decided NOT to look past the next 3 weeks.  While my food may taste totally different then it did before being on this drug, while Tuesday night I couldn't even leave the restaurant right awaybecause I had gotten so sick, I had butterfish last night :) and I kept it in for almost 2 hours :) and right now sitting here, I am still savoring every bite of that fish in my mind - yes I can go another losey 3 weeks... 

I saw a couple of things while we waited around all day yesterday and two of them broke my heart.  The first one was an elderly woman, her husband and her son (who sadly, you can see if very disabled).  The woman is the one who has cancer (you hear way too much in the waiting room) and I guess she had decided she had enough and refused to get her blood work and would only sit there until she could see the doctor and I assume tell her that she was done.  I heard the frustration in her husbands voice but I saw the determination in her eyes and I know it broke both their hearts to even think that this might be the end for her but you know what SHE was making that choice, SHE had the power to say FUCK YOU CANCER and I so wanted to stand up and applaud her.  I Do Not Know how the rest of her visit went, I know the based on a comment I made my Dr. said that if she doesn't take it she will die and that it was up to my Dr. to change her mind.  Did she change her mind?  Did she continue to refuse?  Well I guess only they know but either way I again have to applaud her for her strength and for her ability to make whatever decision she could and I hope she did it with peace in her heart.  God bless her.

The other thing I saw was another women who was there for chemo treatment, you could see that she was hurting, that her bones hurt, as she could barely walk and she just looked so brittle.  She is crying and at this point I am trying not to look but ok how can you not and how can it not be effecting you?  After about 10 minutes of her waiting, she takes out a cell phone and called someone, the next thing I hear is her saying that no one came to help her through this today, that she was all alone.  I guess the person on the phone asked a question and I heard her respond that her dad dropped her off and she assumed someone would pick her up later...  and at this point either she or I got called away so I too don't know how that ended.  All I can think about though it all of the love and support I have, that I have people lined up who would gladly sit her and hold my hand or to do anything that I or we needed to help me and this poor woman had no one who cared at all.  How sad a world we live in, but I again must say to everyone how truely grateful for all of you I am and I hope you know how much I appreciate you all.

I hope to have some strenght during the next week and to call or at least email some of you that have been trying to reach me.  While I may be out of touch more, it's only because I have to be not because I want to be.  I miss and love you all.

And I have to say this one piece.  This blog is for nan, who showed us all such strength during her battle and for being able to make her own decision.  I love and miss you very much, I hope you know how much you gave to all of those who knew and loved you.

Love & Peace,

Sue

Did you know that the peak incidence of thyroid cancer is between 35 and 45 years old?

That when detected early, more than 80% of thyroid cancer is in the early stage (stage I or II)?

Approximately 39,000 new cases of thyroid cancer will be diagnosed this year!!!

Women are more likely than men to have a thyroid disease.

AND women OVER the age of 50 are at a higher risk… (Aunts – how many of you can answer yes to the below question)?

I need to ask since you either know me personally and know about what has happened to me since July or if you don’t know me personally but are a friend of a friend, or someone passed on the link (www.sendingsuesmiles.com) and you have read some of my – HAVE YOU CHECKED YOUR NECK FOR ANY SIGNS OF A LUMP OR ASKED YOU DR. TO CHECK?????  Do you know that if you do this (for the most part) thyroid cancer is associated with a 98% chance of survival…. 

If you answer NO to the above please, please, please do this check today.  Schedule an appointment today with at least your family doctor and ask him/her to check.  Make sure as part of your yearly physical that you have this done, that you have your TSH levels check (it might not have made a difference to me, but do you realize that if can make a difference to you or to someone you love)?

Because we hear a lot more about breast cancer I believe (or I like to believe) that we as women (and men you know you can get breast cancer too) have learned since our late teens or early 20’s to start feeling for lumps in our breasts but how many of us actually know you can and should do this too in your neck.  And I am going to answer honestly here, I didn’t know but then again I also never checked my breasts for lumps either.  But you know what I do now…  Learn from me, learn from someone else you love that may or may not have had their own scare or may have or may still be fighting their own battle.  Check, Check and double check.  A couple seconds a day may make a difference in your life and in the life of those who love you.

How to check

1.      Stand in front of a mirror
2. Stretch neck back
3. Swallow water
4. Look for enlargement in neck (below the Adam's Apple, above the collar bone)
5. Feel area to confirm enlargement or bump
6. If any problem is detected, see an doctor

Note: The "Neck Check" is not conclusive. A thorough examination by a physician is needed to diagnose or rule out thyroid cancer.

Love & Peace

Sue