Susan

Hello everyone- Rachel saw her PCP yesterday-getting up having a cup of coffee, a bite of toast and getting dressed exhausted her but being the determined woman she is she insisted on going to the appointment-All future appointments wil be at her house-Her PCP is a sweetheart and saw right away that it was too much. The visit was a typical,how are you,are you comfortable, we should talk about home health,how is your diet,chit chat kind of visit.......we will monitor her oxygen levels over the weekend and most likely start her on it next week (as she needs it) as she gets pretty winded walkling from the living room to the bedroom. He switched her from oxycodone to oxycontin for her pain which is not too bad right now but this should hold her longer - Her mom and dad are here- her sister and brother arrive on Tuesday- there is a whole lotta love (and prayin') going on in this house and I feel so blessed to be here . I showed this website to her parents yesterday and they are so touched and (appreciative) by the support and love that comes through via your posts- as we all are- Thank you all so much- I will post again later....

Hi Mary Lou- I am so sorry to hear about your best friend- my best friend also has lung cancer and lives in Alaska- fortunately, I live right down the road from her and can see her everyday. I recently was out of town when she got the devastating news that her cancer had spread, I know how you feel being so far away- I felt that way last week-helpless- we were in touch via the phone daily and I know that it helped me and hope that it helped her too- it seemed to have- I am sure that your friend knows how much you care about her and want to be there with her- and I am sure that she understands why you can't- just keep talking to her as frequently as you can- maybe even send her a little home made video or DVD- or recent pictures via email- My friend gave me a framed quote for Christmas years ago that hangs in my house- "Some people come into our lives and quietly go; Others stay for awhile and leave footprints on our hearts and we are never the same" The special people in our lives know When we hold them close to our hearts - I will keep you and your best friend in my prayers Mary Lou-

Hello all- I am sorry that I have not posted-It has been so hectic. I arrived home yesterday along with Rachel's mom and dad. Rachel and Stan so appreciates everyones prayers and messages and of course send their best to you all. She has an appointment tomorrow with her PCP that I am anxious to attend with her - I will send an update after her appointment- If I seem to fall behind in updates Please feel free to email me at any time and remind me to post- I have a feeling this is going to be a very busy time and I do want to keep "the family" up on what is going on- I know that you are all concerned.

Cindy, Prayers and positive thoughts for you- I am an Operating Room Nurse and have seen the talc procedure many times- people seem to have great results- Get rid of that fluid and order up some more of those Horny Goats!!! They sound soooooo good!!!!

Lately it seems that all i am posting are thank you's to you all! I truly do mean it , from the bottom of my heart. I have gleaned hope and strength from you all. Today is Rachel's 50th birthday- she is home and has been reading all of your wonderful psots-I am in Florida with my mom, her twin (they are 83) and my sister- we (my sister and I)brought the twins down from Maine to visit their 87 year old sister whom they have not seen for 15 years- While we are having a ball watching "the girls" I can't wait to get home and be with "my twin"...Rachel- Thank you all again!!! I'll be home soon sweetie-( I know you're reading this... )

Hi Nancy, As a nurse and more importantly someone who's best friend is battling this disease, I would like to add my 2 cents.....for what it is worth...One of the first things I learned as a nurse is that we should always listen to the patient because they know their bodies best..... When a person who has been diagnosed with cancer presents to a physicians office for any kind of ache or pain I would hope that they would be worked up to rule out the possibility that it is a result of the disease....Please request a scan- for your own peace of mind- SCLC is aggressive- and can hop from one place to another in no time at all- I can't believe that these docs don't jump right in and test, test test...just in case......as patients it is our responsibility to expect and demand the best possible care.... I hope that it turns out to be nothing (but please, have the scan you to be sure)and keep you and your grandson in my prayers.

thank you all (again, over and over...) for your kind words.Let me try to answer some questions that some of you have asked- please forgive me for not replying to each of you separately, I just thought it might be easier to do a general response...my mind is still spinning..... Some of you asked about her previous tests- yes they were NED- Her radio-onc told us several months ago that although at that time she had tests that also showed NED - it would surely at some point rear its ugly head someplace- and that is what it has done this time. Her PCP shared an email with me that the ONC sent him today- What he stated is that The disease is "progressing rapidly" and that he is recommending Hospice when she returns to Alaska at the end of next week- From his email I see also that I misinformed you earlier-according to his email it is not in the kidney but it is in the Liver.....along with the lungs and brain- In response to why the ONC gave them a time frame....I think that both Rachel and Stan were so shocked by the news that they probably asked the ONC what the results "meant" and that is when he gave them an estimated time frame- they don't like it when they are asked about "time" but they answer to the best of their knowledge and always say that there is really no way of knowing-I am praying that they are way off.......her group of physicians have really been great and at the end of his email the ONC even mentioned that "it crushed me when she told me that her 50th birthday is next week..." I am traveling right now and on the east coast- I plan on returning home when they are scheduled to return Ketchikan- our 50th birthdays are two weeks apart and I plan on celebrating with her when we both get home- we always said we were going to go to Greece for our 50th- who knows...we might still get to do it - Again, thank you all- I am hoping that this all makes sense,that I have answered your questions and isn't too rambling and jumbled......I know you all understand- thank you, thank you, thank you!!!!

Stan and my dear Rachel called me this afternoon after leaving the Oncs. office- The news is not good, her films show tumors in the brain, kidney (not sure if it is unilateral or bilateral) and lungs. the Dr. guesses 4-6 weeks - How can they say that???? Even they admit they can't say for certain- but 4-6 weeks !!! I am hoping that they are wrong and if they are not that the next 4-6 weeks will be memorable and pain free. My heart is aching for her- Please keep those prayers coming her way- She sounded good- strong for those of us that she loves but I know she is frightened- please help me help my friend by offering me any advice that you may have learned along this bumpy road-

Rachel had 30 minutes of radiation for the cnacer in the bone marrow of her right femur Tuesday and 3 hours of testing yesterday-she will meet with the ONC tomorrow to get results. Her pain is better - I spoke with her and relayed all of your positive thoughts and best wishes, she is very appreciative of you all. thank you all again for being here for her. I will let you know what she learns tomorrow as soon as I find out. I am on pins and needles and can't imagine what it is like for her (and many of you) to be waiting for results.....it must be hell....I know she is in your prayers and please know that you are in hers and mine as well.

Uncle Doug- I certainly hope that the oral symptoms are a side effect to your treatment-nothing more!! thank you for your entry- I read it this morning and I must say- it put a big smile on my face- I especially liked the attitude you expressed in the ending : [There is something I can do, proactively, to advance my chances of a more successful quality of life. Keep the wonder and the desire to experience my life in a positive way as close to my heart as I can, for as long as I can. To share that attitude, that desire for a positive outcome, with as many people as I can. The truth is undeniable and unavoidable – it will always be waiting. But the path I choose, on my journey to reach that truth, is of my own design, as yours is to you. I wish you a safe and wondrous trip. Beam me up Scotty, I’m ready to go where so many have gone before. ] Beautifully stated- thank you again for both , the positive spin and the humor !!!

Welcome fufu- you have come to the right place !!

thank you all so much- I will pass on on your messages and I am sure that they will mean as much to her as they do me.I can see why she has embraced this group the way she has- you truly are one big family.

Hi Henry- Great job with the posting !! I too am new to this site and I am so happy that you have joined us- I am sure that you will find everyone so helpful and so very caring just as I have. My congratulations on the birth of your grandchild- I am sorry that this joyous event has been clouded by your daughters recent diagnosis. My thoughts and prayers to you and yours.

Hello All- I thought I could give you a brief update on Rachel- As you know she went to Portland for radiation to her right Femur- apaprently the plan is to do a 30 minute blast and be done with it (that was to be done yesterday, Tuesday)- They do however want her to stay for a few days and have more films, CT's etc and see the Onc. on Friday- They say this (the radiation) will help with the terrible pain she has been experiencing- and I am hoping and praying for that too ! I have not spoken to her or Stan today but will give a new update once I do. Thanks again for all of the support you have been giving my dear friend!!!

Kasey- This is WONDERFUL news !!! Crack open a bottle of bubbly and if Fred has fallen off the bar stool just make sure he is close enough to the bar so that people don't step on him......

Welcome Mandy! when my closest friend was dx'd in 2003 I began to realize how much I take for granted- not any more...Thank you for sharing your story -

Know that I am thinking of you- always-The big guy upstairs has always watched over us......he always enjoyed our shannanagins (spelling???) Love you Rach- The whole family is sending positive thought and prayers your way!!! xoxox

rachel and I went to grade school together (starting at age 5), Jr. High, High School......and if that wasn't enough, our parents sent us off to Boarding School together (it took about half of the school year for them to realize that maybe they should have re-thought htat one....)....boy, oh boy do we have stories- great memories- lots of them.....Soon after I moved to Alaska Rachel came out (another story in itself...)- she met her wonderful husband and we live one mile driveway to driveway apart from one another.....I am blessed to have had a best friend for more than 40 years...and now I am a Registered Nurse whose closest friend in the world was dx'd 26 months ago with SCLC- Although I feel that there is an advantage to being in the medical profession- (all of her docotrs are always willing to talk to me about everything which allows me to ask questions that the lay person might not think of and sometimes I can better explain things to Rachel and her husband butI also feel that it makes the situation quite difficult at times. Yes, I want to be the one taking care of her when she is in need of it but not as a "nurse"- I want to be her best friend- I want to grieve with her, I want to cry with her, I want to laugh with her-I want to do whatever she needs me to do at the time because she is a huge part of my life! Others forget that although yes,I am a nurse, I am watching my dear friend go in and out of hell- I think that some feel that it is easier for us "nurses" and other health care givers to deal with these situations because we do it for a living- it isn't- sometimes having the knowledge makes it that much more difficult- how do we go about wearing just one hat- spouse, partner, sibling, friend.....those most important hats.....

I am going to try this again- I started a post that was a bit lengthy but a history of Susan and Rachel.....Poof! Gone to Cyber space, maybe a subliminal message to not bore you......ANYWAY.....I will re-cap..... I am overwhelmed by the kindness you have all shown in welcoming me and with all of your support, prayers and words of encouragement to my dear, dear friend Rachel....some of you have come to know this wonderful woman via postings- others have met her while attending the gathering last year in Michigan- And yes- she always has great shrimp !!! The day of her intial CT, May 21, 2003, Her PCP stopped by my office at the hospital ( I am a RN )to give me a heads up of what he thought he had seen on her chest x-ray....his thought being that I could be there with her when he gave her the results ( I thank him for that daily....) He started out by saying,"Susan, you two are more than best friends, more than even sisters...you two are more like twins." He is right about that- we went to grade school together (starting at age 5), Jr. High, High School......and if that wasn't enough, our parents sent us off to Boarding School together (it took about half of the school year for them to realize that maybe they should have re-thought htat one....)....boy, oh boy do we have stories- great memories- lots of them.....Soon after I moved to Alaska Rachel came out (another story in itself...)- she met her wonderful husband and we live one mile driveway to driveway apart from one another..... So you see- all of your support means a great deal to me as I have been blessed for the past 45 years to have had such a friendship in my life and I look forward to many more-With your help and support I know I will be able to continue to do what I need to do for Rach- Thank you all again and God Bless you !!!

Thank you Don-

Thank you Gayle and Kasey-I am sure that Rach will be posting something today or tomorrow before they fly out- It has been a bit difficult as I am on the east coast visiting family......I'd rather be there with her right now....

Hi ! My namae is Susan and I have been reading the message boards for about two years since my dearest friend Rachel was diagnosed with SCLC- I am sure some of you know her as she has been quite active in the various forums since her diagnosis in May 2003. Although I have known Rachel for more than 40 years not a day has gone by in the past two years that her strength has not impressed me-actually it has "wowed" me for the most part and from what I have read I see that this strength is a common thread that most everyone on the list shares. I just wanted to say hello and thank you all so much for all the prayers, good wishes and support that you have given Rach (as she is known to me...)I look foward to being more active in the different groups- As an FYI.... She is on her way to Portland (Oregon) tomorrow for treatment of a newly DX'd (yesterday) bone marrow mets to her femur-her attitude once again is that she is going down to "kick some butt"...not exactly her words but I read the rules regarding obcenities before typing this....