I am so glad I found this Blogosphere- It's allowed me to connect with others diagnosed with rare cancers... specifically appendix cancer. While I live in the Chemical Valley, I haven't been able to connect with someone in a relative situation to mine 'in person'.
But HERE- I've found (or others have found me) others in different stages, different treatment stages, of similar cancers and we are learning tools for each other. I found HOPE in a blog from someone with exactly the type and stage cancer I have, (http://appendix-cancer.blogspot.com/) after looking at the 'numbers' and seeing that making it 5 years past my diagnosis date would be next to a miracle- her blog and informative page made me think 'I can BEAT this and be another success story'.
I've also connected with others diagnosed mere months after me. Cheryl (http://appendix-cancer-sucks.blogspot.com/) found me only a few weeks after I started this blog- and recently Sheboygan Dan (http://www.oncoloblogy.com/) found me. Though I don't know ALL the specifics of others' situations, we exchange positive thoughts and sympathetic 'ears' when feeling like, well, poop.
I was thinking of Dan in particular today- he had the IPHP/HIPEC/Shake and Bake surgery on Friday and I'm keeping up with his updates. His family has been nice enough to update when he can't... he's busy healing!! I totally feel for him because I've been there (ugh and will be again) with the surgery at least. I was glad to be able to at least give him a little insight into what it would be like. Not knowing what to expect is probably one of the worst feelings to have- and to have that worry on top of the worries you already have when you've got cancer just sucks on toast. I'm hoping he has a speedy recovery and can update his blog soon. I thoroughly enjoy reading his posts!
Of course this is not meant to diminish anyone who has posted words of inspirtation or understanding- or anyone who simply reads this blog.
I was talking to my mother in law the other day- when I was feeling so low (Tunnel's End post) she suggested I find a support group for cancer patients/survivors. Though I'm SURE it's good for others- I just can't see myself doing well with a sit-down support group. I think I'd be a blubbery mess. And I DON'T like being like that. I mean, it's good to sit and vent but it would be me, me, me... waahhhh. I'm just not crazy about the idea. This blog is my support group. I get what I need to get off my chest and I don't actually MAKE anyone read this so no one is subjected to my rantings... they (you) read because you WANT to. And that fact does wonders for the self-esteem. So I thank you!
I'm not a good commenter, (is that a word?) but I read and I pray for you and for your family. I have no idea what you're going through, and to be honest, I hope I never do. But I am inspired by you, all the time. Even when you aren't feeling inspiring... keep on keeping on, I'll keep praying like hell for you.
ReplyDeleteI'm another one who can't relate to your medical situation, but think about what it would like to be in your shoes every day, based on our similar age, and our oldest daughters being born the same month (yay babycenter!). I admire your strength, honesty, humor, and pray for you whenever I think about you.
ReplyDeleteThe internet is at its best when it can bring people together, make hope REAL when you see that others in your situation are thriving, provide a place to cry and vent, and make you feel like you are not alone in this.
I do not know where to start....It is a very good thing that you are doing, reaching out to help others even though you face an uncertain future and feel like crap. I have found that by reaching out to help others a lot of times you end up helping yourself. That is what happened to me and how i came to meet Dan E.
ReplyDeleteI was talking with my reverend about my many medical conditions and the one that started my whole ordeal was Feb 10th 2009 i had a ruptured appendix with a tumor inside of it(my appendix was ruptured from 7-10 days before i sought treatment....i am either a tough kid or a idiot or both!)Rev. Jim told me he had a friend/neighbor (Dan)who sounds very similar to what happened to me and that he was going to have a very difficult operation in early Jan down in Houston.Well i have a friend Bev whose sister Barb had a ruptured appendix with a tumor inside of it.Barb underwent at the time a experimental and new innovative operation performed by the legendary Dr. Sugarbaker in Washington D.C. six years ago.
Out of the kindness of my heart i thought it would give Dan( a stranger)some comfort and hope to meet a P.M.P. survivor.I set up a face to face meeting with Barb the survivor,Dan the one facing his nasty surgery,and myself with several issues but not thinking P.M.P. was one of them.We had a very good meeting and i was glad to find out that Dan was not an axe murderer!(before i became ill i had the strength of ten men.....now it's like 5 or 6 so i was not too worried!)We met on Dec 22 and shared are stories and helped each other out..pretty cool huh?
I am receiving chemo right now for my kidney disease(if there is such a thing i will call it"KIDDY CHEMO"compared to what dosages you and others are taking)It's the last month of my 6 month regiment where i rotated between steroids for 30 days followed by chemo 30 days,back and forth.My treatment is working for shit and i actually am getting worse instead of better. Doctors think there is a secondary cause(P.M.P.) hindering my healing of my kidneys. Dr.Pappas of Froedert hospital in Milwaukee (same Dr. Dan had! weird huh?)has just pushed for me to see him on Monday...i was scheduled to have a consult Jan 27th.Based off of my first visit Dec 30th he wants me to have surgery before the end of this month ....I would have the P.M.P operation if there is evidence of the disease,my spleen removed for sure and possibly my left kidney.My immune system is way knocked down due to my immuneosuppressant treatment...Dr. Pappas feels that the disease could be running out of control and uncontested so he wants to get in there as soon as possible. I am not comfortable having surgery when i have no way to fight off anything if something does go wrong.
ReplyDeleteDan called my cell on Tuesday and we talked (he is now taking 4 walks a day...the tube coming out of his chest sucks along with how he feels being on chemo)and he is doing really good. He is overwhelmed by the support he is receiving from people like you. Dan insisted I get a second opinion and he told Dr. Fournier about me. Dr. Fournier's personal assistant called me on the phone this morning and talked to me for about 20 minutes. My records will be sent and I will be going to Houston towards the middle of February to have a consult with him and feel pretty good about it. This never would have happened if I did not take the initiative to help out someone who was a total stranger to me at the time. I never never never cared for computers and avoided using them at all costs. I have written 4 emails since September about my condition (more for myself). I speak from the heart and try to make them entertaining and thought provoking. No one wants to hear complaining about how sick I am. Many have told me how inspiring they find them and want to know when the next one is coming. Blogs are a much better way to communicate, and if I was not so inept at PCs, I would have one already. I hope to have one soon and have thought of a name for it, "Big Fish Diaries," and I have several cool pictures to go along with it.(musky lures stuck through my thumb...stuff like that)
I will continue after i eat...i am really slow on this thing and will be really pissed if i wasted all this time and this does not post!
Mark
You seem to have a great sense of humor very much like myself...if you don't have a sense of humor you may have no sense at all! Rachel hang in there and keep swinging,God does not always make things easy for us for a reason. This provides us with the opportunity to learn lessons and to grow spiritually.Keep reaching out to help others and your smart ass comments...they are great and you should know that they are helping others!
ReplyDeleteHave you noticed a lot of people "RUN AWAY" when someone dies or gets very sick? They avoid the uncomfortable situation at all costs even though deep down they want to express there feelings but just can't bring themselves to do it. I was a person like that.
I have made lots of friends throughout my life and noticed some of them have "RUN AWAY"when they heard about me being sick.It would be easy for me to dismiss them and say things like...they must not have been as good of a friend as i thought....What i did do was hunt them down!Tactfully letting them know i am alright and in many ways a much better person than i was but still am very much the same goofball! I let them know that our friendship was more to me than just a co-worker,teammate ,hunting/fishing buddy,friend,etc.By knowing them and sharing both the good times and the bad times that they enriched my life and are part of the fabric of who i am.Hopefully they got a kick out of knowing me as well.My illness has given me the strength to reach out to others and instead of"Running Away"I now find myself compelled to "RUN TO" others.So for what it is worth hope you don't mind.
I GOT YOUR BACK!!
MARK
Thanks Mark- It really means a lot to me to have support of others.
ReplyDeleteI dig your "Big Fish Diaries" and that's one hell of a fish!
Keep up the good work and support of others!