I know it again has been a long time since I have been able to reach out to everyone through my blog.  I just don't have a lot of energy and getting up and on the computer takes more then I can handle so I pretty much avoid it at all costs, lol.  A lot has gone on in the past couple of months and I figure its time to reach out and let those of you who still follow my journey know.

I have been on treatment for the past 19 months and basically within a couple of months of starting the medicine the  side effects kicked in and we knew that I had gotten the medicine versus the placebo which is a good thing.  The medicine has worked on treating the tumors but basically have taken their toll on me and I have finally made the decision to stop treatment.  This has been a long battle both mentally and physically and I have struggled with this decision for quite awhile.  Thankfully with my family's love and support I am able to reach this point and know in my heart and soul that I am doing the right thing.

From the beginning I have said that when the time comes I will always choice quality over quantity and I feel at this time I have totally lost my quality of life and my hope is that I will be able to get some of that back with stopping the medicine and trying to rebuild my body back up.  I am looking at this as a new journey, a time from me to heal again, a time for me to be able to enjoy life again to it's fullest, to make the most of whatever comes our way and to make as many memories as possible.  I will continue to try and fight this horrible disease but in a different way.  I want to live again, to laugh again, to be able to enjoy whatever time I have left with my family and friends.  And I feel that if I continue on the same treatment path that I won't have any of that, that I am just becoming a shell of myself and yes while I am alive I have to look at it a different angle and wonder what is the point, you do very little besides sit on the sidelines and watch everyone else continue to live and enjoy their lives.  I am to the point that I can no longer pick up my grandson, can no longer crawl around on the floor and play with him and to this extent what is he going to remember???  I miss my husband, I miss my daughter, I miss my mom, dad, my sister and my brother and all of the good/fun times we had.  Now it's ok if you want to come to my house and sit here with me that's really the only way I see them anymore and 90% of the time I am in pain and not able to even enjoy having them visit.  I miss my Kayla time even if it has only been taken her to a movie... I really miss not having been able to share that same type of bond with Kylie but sadly her and Nate are not of an age where I can be alone with them, or where I can run and play with them because of how I feel.

For those of you who really know me then this decision should not come as a big surprise... and for those of you who really really know me you know that I do not give up easily, that I am and always have been a fighter so for me to have decided to stop this treatment plan you would know that it was not a decision that I made lightly.  Who know what the future might bring?  My hope is that the past 19 months of hell have paid off, my tumors (or the main 2 that are being tracked) have shrunk by 40% so that at least should give me more time.  God knows that if I didn't do the treatment at all I wouldn't be here today and I am so very thankful for all that it has given me.  If in time I feel that I can physically and mentally withstand another treatment plan then that will always stay as an option but at this present time and place my plan is to just try and enjoy life to the best of my ability.  To try and gain some much needed physical wellbeing, and to continue to take each and everyday one step at a time.

As always thank you for your love and support and I hope that you can continue to support me as I face a different journey.

Love & Prayers

Sue

Wow it really has been a long time since I have posted and I am sorry about that.  It's just been a rough couple of months and I never seem to have the energy.  I didn't want to leave for Hungary without reaching out to everyone since I finally got a better understanding of what's going on with my cancer treatment.

Overall the tumor's have shrunk by a 35 to 40% margin, which is awesome.  I do have new growth but that are still considering everything stable.  Appears that I had more tumors then they told me about as I never knew I had them in my lungs.  I guess they tell you as little as possible so while I'm hearing lungs for the first time last month it turns out it was there all along.  Basically this is giving me the incentive to stay on the medicine for another cycle.  I get scans again in June and we will reassess again then.  If the side effects continue to the level they have been then they will most likely pull me off the meds but if they can stay at a tolerable level I'll stay on as long as I can or until the end of the trial which may be a couple of months.  The good news is there is another drug available that actually has been approved by the FDA so the Dr's plan is to go on that one next or to get some type of compassion pass to stay on the drug I am on now.  So confusing right.

Thank you everyone for your continued love, support & prayers.  I know I don't talk to everyone as much lately, it just gets hard for me when I feel so bad.  I hope that the warm weather will help and also the visit to Hungary.  I'll post again after our trip and let you all know how things went.

Love & Hugs

Sue

Just wanted to do a quick check-in now that I am back home and have my appointments looming ahead of me.  I restarted my medicine today with a very heavy heart and a lot on my mind, so much confusion with all of this.  I'm so very tired and I really am confused about how much longer I can keep swallowing those pills.  I know that right now those "pills" are extending my life but I hate what they are doing to me.  I hate the way I feel, I hate being so fucking tired, I hate not being able to get up and do things like I used too, I hate this and I hate cancer.  I'm in a bad place in my head and I have been trying to get myself out of it but it's been difficult.  I was awake yesterday at 3 am and could not for the life of me fall back to sleep so figured last night I would do a lot better but NO I was up until 2 am which at that point I took another sleeping pill so that I could at least get a couple of hours.  I know I'm not sleeping because I have so much on my mind, trying to figure out how to deal with all of this, what's the right and wrong way to go.  And then knowing that when I woke up today I'd would start this whole horrible cycle all over again.  Joey tries so hard, I know it's killing him watching me go through this especially when the talks get harder and I'm sorry honey but where else can I go but to you.  I know how you feel, I know what your decision would be and god that's what me heart wants me to do but my head is pulling me so completely in the other direction.  I'm crying as I sit here and write this so please know that everything I am saying is not with a light heart.  Those of you who love me the most I know you hurt as much as I do, I know it's not easy reading some of the things I write but if I don't write them then I can't get it out of my head and in order to stay on this medicine as long as I possibly can I need to get it out of my head and onto this paper.  Maybe these one's I write in a journel and not out there for you all to read... is that the way to go?  Maybe I'll think on that, guess right now whatever decision I make, I want you to all know that I didn't make it easily, each and every decision has been made based on the love I have of my family and the inability to be a quitter in their eyes, with the inability to walk away for them before we are all ready. 

I just read about some of Elizabeth Edwards feelings during her battle with cancer.  And one of her wishes was for her to make it 8 years, time enough to see her youngest graduate from high school, another one from college and another to move onto her next chapter in her life.  How is it that this is how we think, we think in time only, I want XXX number of years...  were not asking for a cure as majority of us know that is impossible, we simply want time, time to see all those wonderful steps in our childrens lives, the milestones that we are not supposed to miss.  But at what price is that time?

Oh well enough tears for today.  I'll reach back out after my appointments.

Love & Peace

Sue

Well here I sit in Florida watching a dear friend go through what no person should have to endure.  About a month ago I found out that my girlfriend is pretty much in the same boat as I am, her cancer has progressed beyond what they expected, she is now Stage 4 and undergoing radiation and chemo.  All that we can do is hope and pray that the tumor's remain stable and that she is given time.  Time what does that really mean??? Time to understand, is that even possible?  Time to say goodbye to her family, ok well that one I know is utterly impossible...  Time to understand why her?  Yet time is all we have to hang our hearts on.  Time for a cure, time for a miracle, time to live before we die.  There are miracles out there so why can't it be her and I???

I have to question WHY?  What is the point of this? What is god thinking?  Is there a god?  I don't know, nor do I beileve I will ever know or be able to tell you why!  All I do know that even going through all that I have this past year I am still helpless to Donna and her family.  What words of wisdom can I possibly offer? We both know or at least comprehend where this path is going to take us and there are no words I can offer that will make any of the pain go away.  No amount of comfort that anyone can offer that can heal a broken heart, knowing in the end what we are leaving behind.  What happens when we are gone?  How do we know our kids will be ok?  How do we miss seeing the milestones that they still have ahead of them.  Their weddings, the future grandchildren that we may never hold.  I at least am thankful that I have been able to wrap my arms and hearts around Nathan but the biggest fear is still attached to that, what if he doesn't remember.  What about those that come behind him that never got to meet me at all.  What about Donna who hasn't had that at all yet?  How is this fair?  Why us?  Why anyone?  What are we supposed to be thankful that we at least had this time?  At least I got to see Keirstyn grow up to be an amazing young woman and have one child.  Well of course I am grateful for that but I want and need so much more, so does she, so does Nathan, and so does Donna's family.  I'm sorry but that's how I feel in my heart, those are the questions I live with each and everyday.  I know that in the end all we can do is hope and pray for that time, for that miracle, to hear the words that the tumor's did not grow...

It's been a pretty rough month, the side effects have again taken their toll.  We tried a different approach this month and it appears that approached backfired so were off to trying something else to make the medicine tolerable. The doctor doesn't want to give up on this medicine yet and I'm to the point that I do but I still keep on trying.  So one more month.  I'll try this latest approach, I get my scans and results this month and then I will take it from there.  That's all I can do right??

In the meantime I'm still working on the bucket list.  I hope that come the end of January I'll have dates planned for Hungary and I'll continue to spend as much time as possible with my family and friends.  Pray for us, please pray for Donna and her family.  Give them all the love and support you have given me this past year, they need it.

Also the ability to comment on this blog has been turned off due to the spam.  Please feel free to continue to comment on my facebook page.

Love & Peace to all of you.

Sue

Well we finally started working on the bucket list.  Oct 11th I left with Ed for a week and do an RV tour of PA (lol) plans to go everywhere but there was so much to do in PA that we never even left the state.  It was awesome and I really loved being able to spend quality time with Ed, to be able to share my time with those who mean so much to me.   We took Stewie and he had a blast, Stewie has traveled more then Nathan :).

Joe and I are in Nashville, TN this weekend and we are totally loving it.  Anytime we talk about something happening not even with me dying but just say Joe and I split up or something like that he has always said he would move to New Mexico or Arizona (yeah ok I don't understand those either) but Keir has said that if anything happens to me she would love to move her and rebuild a life.  I would love for them to move here, I would know that are happy and safe.  It's a beautiful city, very clean and really there is nothing I can say that I don't like about.  We finally decided that we ARE going to stay here the extra day and do the Rascal Flatts concert at the Grand Ole Opry so I'm quite looking forward to that.  The weekend was great with the rest of the crew that came for the Eagles game, ok it would have been so much better if the Eagles or scratch that, more importantly if the Phillies had won... but really I don't think we have a very good score in our teams winning any time we travel to see them.

I know it's been a while since I posted and I am pretty sure a lot of you know what's been going on.  At my last dr. appt I had a real tough decision to make about staying on the meds or going off of them.  The side effects are really taking their toll on me; I have a hard time eating, drinking and just even functioning and was really at the point where I needed to choose quality over quantity.  Thankfully the Dr. came back with another option and we are going to try longer breaks.  So I am interested in seeing how that works.  This month hasn't shown positive results but I was off a week and then on a week and then off a week again so I am really interested in seeing if 2 full weeks will work better.  It only takes about 4 days for the side effects to start kicking in and within 2 weeks they are pretty severe.  I think my system is just too used to the meds so they start working a lot faster.  The positive is that the medicine is still working, no new growth at my last tests results.  The negative is that if I stop the meds they can not even give me a year to live.  That of course is not acceptable so I am going to continue to fight and stay on the meds as long as I can.  I do know that I have been back on the meds for just 3 weeks and quite frankly I don't know how much more I can do.  I am going to try and stay on another week which would put me at Nov 4th, I go back to the doctor on the 1st (days off track due to our trip) so hopefully I can get through then appointment and start the 2 week break that Thursday.

I have been thinking a lot and yes that pretty much is all I do.  After hearing what the dr. said it sure put things into perspective again and I know look at everything as it may be my last.  This may be my last Thanksgiving, my last Christmas, and my last trip with my husband... How do I fit everything I want to do into a timeline?  I need to go to Hungary.  I need to do these types of trips with out members of my family, close friends.  There just is not enough time or money to get them all done.  All I look forward to know is spending time with my family.  While I love trying to take these trips see these things that I will never get the chance to do, I miss the time it takes away from my family.  How does a person balance all of that?  How do you fit in the rest of your life into a couple of years?

I am not being morbid.  I am a realist at heart.  I have to come to terms as to what the end result is going to be.  To those of you who tell me to keep fighting, you can beat this disease.  And I will keep fighting but the reality this is not beatable, I am not curable.  All we can pray for is time.  Time to spend with those who mean so much to me.  It would be so much easier if I knew those who cared about me came to the same acceptance level.  I can talk about this, I will not break, I will not stop fighting but to help me I need to know you understand what is going to happen.  Do we all need to accept it, NO... do we all need to realize it’s the reality of the situation YES.

Cherish what time you have left with me.  Wake up your own selves and realize how fast things can end.  Cherish your family and friends as we really never know when it all my end.  For me, the things I do know I will be doing for my family.  I will leave my mark on them, there is no chance my grandson and my nieces will not have special memories of me.  Nathan will have letter for each and every milestone of his life.  Keirstyn someday will find love again and if I'm not hear to see it she will know I am there above watching over her.  Joey will know that he was my rock, my best friend, the love of my life.  My parents will know that while times my have been rough they formed me into being the person I am today.  Bernadette and Joseph will know that I was and always will be their favorite sister (lol).  I will remain in each of your hearts way past the time I am gone.  If you care or love me at all you need to take advantage of spending that time with me know as regrets suck.  I regret not being able to say good-bye to a lot of those who I have loved and are gone.  I swear to my family they will not have that same regret.

Ok enough melodrama crap.  Time is here, I am fighting, I am alive.  I am fully and whole heartedly working on the bucket list.  Route 6 check.  Nashville check.  Grand Ole Opry check.  Graceland check.  Hungary and Alaska are to come god willing.

Love and Peace to you all.

Sue

I am so upset right now and I just need to write to get these feelings out.  I am so tired of just being a number to my doctor... at what point do I stop doing this to myself?  Is it time to go somewhere else?  I blame myself for a part of this as when I lost my endo I should have listened to my heart and found a new one instead of letting my onco doctor say she will be monitoring it.  I have been feeling like crap, really bad these past few weeks and this week real real bad, I sit here and blame myself, saying I'm pushing myself too much, I'm trying to get the rest of my life lived in the next couple of years that I do too much and then pay dearly once I sit down.  Does that make sense?  To those who suffer from this disease I would imagine it does especially when they tell you your terminal, at best you have 2-5 years so what else can you do except live those 2-5 years the best way possible.  I go and go and go until I can't go anymore.  So that's the blame on me part and today I get the blood reports (this is why it took so long for me to get the copies as I think they know I'm NOT going to be happy... My TSH level is 20.16... (Normal is 0.34-5.60) ok so seeing 20.16 on this report totally blew me away - how does my doctor NOT do anything about this???  If we hadn't said to her at my last appointment again about following up with an Endo, this would have been ignored again.  I am sitting here barely able to type, I can't knit, I can't write, I can't hold my grandson because everything hurts so much, it feels like my bones are just going to fall apart.  I spent the last couple of days really thinking that the cancer had spread even further, that maybe it's in my bones now, maybe went to my brain you know totally starting to freak out because I have felt worse then I have ever and to learn today that all of this could have been avoided if my dr. had done what she said.  This is what we rely on, this is what we ask them, this is their field not ours so why do I feel like I know so much more than she does?

I'm so confused, I'm so upset, and I’m so hurt over this.  This is my life she is messing with.  As I sit here and write this I think I really did convince myself that I do need to find a new doctor.  I hate the thought of doing that especially knowing that I didn't get the placebo drug, that I am actually on the real medicine, that the medicine is doing something as there are no new tumors, and then on top of it the only good thing is that they are letting me get breaks on the medicine, if I go somewhere else how can I continue the medicine?  Will I get the same one or do they have to start all over again?  Is it even allowed?  I don't think it is.  I'm stuck and it sucks. 

Sorry everyone, this wasn't a good post but it did help me, I needed to get this out and this is the only way I can do it.  As I write it, I end up knowing that there are not options and I don't have a choice.

Love & Peace,

Sue

Wow, it's been a little crazy since the last time I have been able to blog.  I have been taken advantage of the break, having a little energy and put off touching the computer as much as possible.  And then of course since my memory seems to be leaving me way too often I forgot my sign on and passwords again.  I actually saved them somewhere and can't remember where :).

It's been a very sad week this past week.  There have been two very sad deaths, Megan's very dear friend Anne (who I have asked you all to prayer for) lost her courageous battle with lung cancer this past week.  The amount of sadness and pain I feel for Anne's family and friends is overwhelming and I pray they can all find strength in knowing that she is no longer is pain that she fought the best she could and went to god with open, welcome arms.  God bless you and your family Anne, I know you will be greatly missed.  I know you will be watching over and guiding your precious children.

And then Keirstyn lost a friend the she know from grade school.   Such a sad, tragic and again unnecessary death.  Bill was only 23 years old and I know there is a reason why god has chosen to take these two wonderful, loved people I just don't understand it.  Please pray for Bill's family and friends too, may they have the strength and courage to heal, and keep their memories of him in their hearts forever.  My heart breaks for his parents, for any parent that has every had to bury a child, I know it would have to be the worst thing imaginable.

I have been back on the medicine since Thursday and it appears that the side effects kick in a lot quicker then they used to.  Got up this morning to already feeling the blisters coming back on my hands, but at least this time they are in different spots - was weird how each and every time they showed up in the same exact spots.  Throat hurts again but at least no blisters, sores inside mouth yet, just the starting of tenderness.  Energy level is pretty much back down to null, but I am going to again try to do something at least an hour or so a day.  I just actually decided that I would make my wonderful family their (well at least one of their favorite dinners) Vodka Rigs tonight so as soon as I'm done blogging I'll be heading to the grocery store.

September is Thyroid Cancer Awareness month and I am thinking about doing a little walk in the park in Falls.  I am going to try and raise some money for Thyroid Cancer research and to get some people to raise money with me and do a three hour walk.  I'm thinking Friday night from 6-8 pm on the 17th of September.  I'm thinking then just because the weather might be a little cooler but also open to Sat or Sun morning or evening.  I want to see what people think, who would be interested in walking and raising awareness and much needed money to help with the research.  I will specifically ask that it go to U of P and the thyroid cancer research under my dr (Dr. Brose).  Please contact me at sue.evert@gmail or via this blog or my face book if you’re interested in helping.  As you can imagine this would mean the world to me.  There is not much known or done for Thyroid Cancer and every time I turn around I am hearing about someone having an issue with their thyroid or with getting thyroid cancer this past year.  It is now the FASTEST growing cancer out there these past 3 years and I really have to wonder why... is it because no one has heard of it so we just weren't paying attention or is it changes in the environment, other changes.  Why does this happen?  Well really why is there cancer period... why can they be talking about finding a cure (were almost there) for HIV/AIDS yet cancer has been around for hundreds of years and we are no where near finding a cure for this disease.  I really have to think at some point it's because the industry's make too much money for there to be a cure for this disease.  Ok sorry enough political crap but really I do continue to have to wonder why.

Hope all is well for everyone.  I miss so many of you and while I have been getting to see a lot of you lately there are way too many that I still don't get to see enough.  Please know that all of you are in my heart each and every day and that I hope to continue to see those who have meant so much to me this past year.  (My girl’s dinner last Thursday was great, and gets to see my very special girls and the creators of this wonderful website this Thursday night :).

Again, I need your help come September so please let me know if you can help and I want to pick dates that work the best in getting the most people involved.  Reach out as soon as you can.

Please pray for Anne & Bill and their family and friends.

Love and Peace to all,

Sue

THYROID CANCER AWARENESS MONTH SEPTEMBER, PLEASE JOIN ME IN RAISING AWARENESS AND FUNDS FOR RESEARCH (FOR U OF P THYROID CANCER DEPT)

CONTACT ME ASAP FOR DETAILS.

On Saturday it was 1 year since I had my surgery, wow that went really fast.  I actually think I would have forgot that "anniversary" if Keirstyn had not reminded me.  I do remember that day quite vividly but of course would like to forget it.  But I must say I am very happy with the person I have become in this past year.  I can not believe or even begin to comprehend what god had in store for me this past year and in reality the coming years.  I never thought or even imagine that we would be going through this, that I would have the strength and wisdom to even comprehend what people go through everyday when they face this kind of adversary, ordeal or triumph.  I can say triumph because no matter what here I stand one year later enduring this disease and everything that comes with it.

I look back to the day I married my husband... no one and I really really mean no one thought we would make it one year being married let alone 24 years.  Believe me it was not easy, there were times when I so wanted to walk away.  Keirstyn still remembers (and lord she was young) sitting in the drive way, me balling my eyes out, her saying bye-bye to her daddy, Joey yelling out the door if you leave don't think your ever coming back... the pain from all of that, the damage that I may or should I say, we may have caused Keirstyn is never forgotten or something that either of us can undo.  I would not change I thing though, I believe in my heart that it made me stronger, it made Joey realize how important we were and it made Keirstyn the person she is today.  She choose to fight for what she believes in, she choose to walk away before she made the biggest mistake of her life (I'm not saying I made a mistake, I just mean that I fought long and hard for the relationship Joey and I have today).  We choose to fight it out, we understood that once you make the decision to walk away it is not easy to get that trust and love back.  Today I see so many people not "fighting" for their relationship, not fighting for their love.  Whether in the beginning we made the decision to work it out because of Keirstyn or because of our love for each other, I don't know all I do know is that we both fought like hell to make it work, we never gave up, we might have hated each other at times, we might have been miserable for days on end but the truth it we endured, we choose our love, whether in sickness or in health, we believed in the vows we made to each other and we made it work.  I can promise you this, I would NEVER, NEVER had made it through this past year if it wasn't for the love and support from Joey.  We may not have the best relationship, we may miss some of the intimacy that everyone else shares but he is and forever will be my rock, my lover, my best friend and the most amazing man I have ever had the privilege to know.  If Keirstyn takes that one thing from me then I thank my lucky stars... believe in  your love, believe in the vows you take, never give up, if you truly love the person you chose to spend the rest of your life with then ever up and down, ever bad moment, every happy moment is well worth it and when your old and gray (or white lol), when the time has come for you two to move on, to make your peace you truly know if your heart that each and every moment was worth.  I wish everyday that kids (and I mean that kids cause unless you know true love, true meaning, true fighting then that is all you are is a kid) would fight for what they believe in, fight for the love you have or had for each other, fight for you kids and make it work, because if you don't it maybe the biggest mistake of your life.  I know it would have been for me...

We (mom, dad, Bern & I) had a wonderful vacation - thank you so much Ed for passing on your week to us.  I for sure did not realize how much that week would mean to me, I may not do much during the day but getting away and forgetting all of my problems was surely a godsend.  I was able to relax, spend time with my family, read which I so love to do, and not remember all that is going on.  I did have a pain medicine increase so I'm sure that had a lot to do with me getting through the week but whatever if it helps to get me through it all, if it helps keep me on the medicine then I say bring it on, medication is better then living with the pain.

It has actually been almost 8 weeks for this cycle (Thursday will officially be 8 weeks) and I was quite pissed off and upset when they wouldn't let me take a break.  At that time they didn't tell my to increase the meds (pain) though I did a little bit here and there just to get me through the day.  I really thought they were F'ng with me, and was like F U then, you will see because come next week I'll prove to you how bad this is and you will be forcing me off of the medicine.  Thank god that didn't happen and I was forced to endure and of course the increase in drugs helped.  I again proved to myself what I can and can not tolerate, and that as hard as it is sometimes the doctor is right.  I'm still upset though that they told me and almost promised the 3 weeks on 1 week off cycle (I should have NEVER been told about it, if it wasn't approved) but I am thankful that everything overall worked out.  Everything is a lot worse now, but I am still dealing with it, still eating one meal a day and most of that solid but I still do plan (as well as Joey does) on telling them how unfair they were this past month and I do look forward to Thursday only if for the fact that my doctor can finally see me at my worst.

A real personal message here right now for my Aunt Barbara.  I need to tell you how wonderful your words are, I know you leering of writing but each and every time you do you give me amazing strength (as do all of you that write) but Aunt Barb you always seem to find the right words and always seem to pick the right days to post them, they have each and every time been very bad days for me, days when I am ready to quit but your insight and your words continue to help me fight this battle.  I hope that one day we can see each other again, you and I really seem to have never met eye to eye and I really feel that even though we haven't seen each other in way too long, that I am able to fight this or continue to fight this because of the encouragement you give.  I would love to give you a great big hug and to catch up on all that we have missed so please the next time you are in PA or close to PA contact me so we can meet up.

Words can never express to all of you, what you and your support has meant to me this past year.  Please continue to post either on here or on facebook, contact me when your in the area I'm not so good at it these days, I really don't go out much but I love hearing and seeing you all when I can.  Please continue your prayers for me and my family and for Anne who (truly a gift or miracle from god) has been improving these past weeks and was able to start her clinical trials, this is a person who had her last rights read to her, so without a doubt it is proof that god does listen to us, he is giving her and her kids time to understand and except whatever life may hold for them. 

With peace and love (everyday for all of you)

Sue

Saying Fuck You to cancer with all that I am and all that I ever will be.

Happy Anniversary Joey, I love you with all of my heart and soul...

As I'm sure most of you know by now, I had my scans and the results and everything came back with no change.  So at least we know the medicine is stopping the growth, we didn't have any shrink or die this time but no new growth is at least still positive.  A lot for me was riding on these scans as my doctor had talked to me last month about trying to do some breaks so that maybe I can get some elevation with the side effects but until we know the results of the last 12 weeks no one was willing to discuss it yet.  Originally it was pretty encouraging that with no new growth that I would be able to try a cycle of 3 weeks on and 1 week off but unfortunately the drug company has still not approved this.  It's so frustrating for me as I just want to be able to function more, over the past couple of weeks my energy level just gets worse and I was so looking forward to getting a break so that maybe I could at least get the energy to do something’s around the house, maybe even get out a little more of see some friends but as of right now looks like that isn't going to happen.  Appears they also want my side effect stage to go up which really doesn't make any sense to me at all.... my biggest fear is that I'll end up in the hospital again and in my head I know if it gets that bad I'll be taking myself off this trail so why would anyone be willing to let that happen again.  AND why don't they take into consideration that Chemo patients get breaks.... you need to continually build up your energy, your immune system to be able to get the chemo, how is this situation any different?  Why do I have to be almost at a level 3 for them to allow me to take a break, isn't a level 2 so much easier, I would then only have to take a week off, build myself back up and then start again... to me that just makes so much more sense - so freaking frustrated on this.

I leave for the shore (OC, MD) next Saturday so I was really looking forward to this weeks break so that I can go away with my sister and my mom and dad and actually be able to do things, walk around without blisters on my feet, eat some FRESH seafood, explore this area as I have never been to Ocean City and here instead I'm scared to death to go, what happens if I get really sick and I'm three hours away from U of P?  I mean I know that if I'm not feeling good, if everything continues to build up then obviously I don't go away but of course that's the last thing I want to do.  I want and need this time, time for me and time with my sister, mom and dad.

I did do something positive this week to help clear my head, a way to try and find something to do so that I can have a couple of days outside of my "head" constantly thinking and worrying about everything.  I signed up for a crochet class, it's only a way day 2.5 hour class that I'll learn the basics but from there I can at least have something to do during the day, a new way to relax.  I'm looking forward to it and if all goes well I will take the second class and then maybe even try a couple of other classes.  I can't wait to make my first scarf, footie’s and blanket for the winter :).

Really not much else going on, I spend a lot of my time reading totally into my kindle - just another way of escaping everything.  I save whatever energy I have so I can have those special hours each night with Nathan, go for our walk and our play time.  He is sick right now, and last night he was in my lap and we watch this show on demand that is called Eebebaby, he loves it.  Well there is this one skit in it where they sing this song called "Imagine", it's just such a sweet soft song and I look down and here Nathan is completely and utterly signing along.  I have never in my life seen anything so precious, I just wanted to cry watching and listening to him.  Good lord they grow up so fast.  Our little guy is repeating and singing a complete song.  It was just breathtaking.

A final request for everyone who may read this, can you please pray or continue to pray for Anne, a friend of a friend who as lung cancer.  She has progressed to a very sad and dangerous point and it's doesn't look like there is much time left for her.  Please pray that she is able to find comfort and peace, that she does not have to suffer and that god will watch over her, her husband and their three little ones.  If there is any chance that she can still pull through, please pray for that and for love and support for all of them.

Love and Peace

Sue

Still saying Fuck You to Cancer with all that I am

It's finally almost here, just one more week to go and we will know how things are looking for the past 12 weeks.  Sometimes it's hard to believe that I have been on this medicine for 7 months and other times it feels like forever.  I would have thought by now I would stop with new side effects but oh no not me :) I started with some new ones this week so I'm really getting anxious waiting for this next appointment.  I think though maybe it's my thyroid meds, since I never got a new appointment for the endo I don't think anyone is monitoring my thyroid so I'm going to ask my doctor to run those tests next week too. 

It's been a rough couple of weeks, I was pretty depressed but I knew in time I would be able to work things out again.  I think it get's tough being alone so much but I don't have enough energy to visit people or even have people visit me but I really hope that gets better.  I had a wonderful day yesterday with a great friend and I am hoping finally getting out of the house doing some walking and enjoying some great company will be the start of a wonderful weekend first off with the getaway with my daughter and then to our block party on Sunday.  Can't wait...  Looking forward to doing some of the wine tours with Keirstyn and just vegging by the pool with her, it's needed by both of us so much. 

Nothing else really going on.  I really wanted to stop in and say hi to everyone - let everyone know that next week will be the big test and the results will be known by Thursday.  And I really really want to thank everyone for their wonderful comments to my blog.  I love hearing back from people, please know that what you write back to me continues to give me the strength to fight this battle.  Knowing that you all are willing to share some of your memories and feeling (whether good or bad) means to world to me, hearing what some of you have went through in dealing with the death of a loved one, or in facing your own battles issues is another way for me to look for more in myself.

So please continue to do so, please know how much it means to me.  I love you all and miss you all too - hopefully I'll be able to start getting around a little bit more, I miss seeing people, I just know that right now I need to focus on what my body needs and right now it's pushing me to rest a lot - oh well you have to do what's best for yourself right :)

Love & Peace

Sue