Saturday, June 30, 2007

Initial Diagnosis... OH, #*?@!!!

Since my initial diagnosis of Diffuse B-Cell Non-Hodgkins Lymphoma (NHL) on June 11, 2007, I have been living in a whirlwind of doctor visits, scans, tests, research and so on.

Planned an immediate family & friends meeting last Thursday evening to share the health diagnosis with my daughters...it was a great suggestion from a dear friend...it truly gave breaking the news to my children a wonderful feel of "community" surrounded by much love and support from everyone.

Finished the scans and had Doctor visit Noon on Thursday, June 28th to discover results and hear final recommendations regarding my treatment plan. Think he warmed me up a bit before because I thought the 12 week chemotherapy layout was all there was. OH NO, I will also be undergoing a Bone Marrow Transplant. So 12 weeks to finish chemo, 6-8 weeks recovery prior to the Bone Marrow transplant which will require a 2-4 week hospitalization (as I will have NO immune system). Followed by a 2-4 month recovery period at-home with, for sure, mythe first month very limited energy. The transplant will occur IF my cancer and my body are responding well to the chemo (so I'll be asking for continued prayers from everyone for some time), then they do the transplant to reach for the complete cure! OH yeah, I'm sure you're taking a deep breath too. Kinda can't help it as my little road trip has turned into a year-long adventure!!!!

Biggest shock was hearing the doctor say 2-4 weeks in the hospital, my eyes bugged realizing how serious it all just became....as you know, they don't like to keep people in hospitals that long. Couldn't sleep so searched the internet, then once I read an article (see link regarding Bone Marrow Transplants), oh boy, major melt down Thursday night at bed. It’s a good thing...gotta let it out but the realization that my 12 weeks when to a year plus and all the planning to be done. Had to sleep, so, held my sister's crystal she gave me, meditated to calm myself and fell fast asleep. Action number one Friday morning noted an index card with my Louise Hay affirmations. Plan to carry the card with me everywhere and repeat them day and night until solid to memory! And, I also expect I may cry a little each night too but I'll meditate, hold the crystal, say my affirmations, find my love and joy, be calm with inner peace and faith, and drift off to sleep.

Saturday, Margaret and I enjoyed a river view lunch while brainstorming the "much to be done and delegated" so we can outline and then really layout the plans...our goal is to lay a foundation that will support me (and the girls) and then let everything flow.

I hope these notes are clear. Just want you to know what's happening in my very overwhelmed brain. I do have ONE MORE test to check my gallbladder - Oncologist wants GI to take a good look before we begin chemo and transplant - he wants nothing to stop us once we begin! He's being very thorough....this is a doctor who wants to win this and get the full CURE! I'm so pleased and confident about him! And, all my candle connections work through or out of the same NW Cancer Specialist clinic so I feel very supported there too! It makes me feel strong. Feel the fear and do it anyway...well, not much choice! So smile in the face of it!!!!

16 comments:

Anonymous said...

This is a great website and a wonderful way to keep us all updated on how you are doing. I know the next year is going to be a toughy for you but your amazingly positive spirit will pull you through.
Hugs, Karen (posting again since the other didn't take)

Anonymous said...

Okay Joan,
You have a difficult journey, but we will be there with you. I will be dedicating my Team in Training (TNT)marathon for the Leukemia and Lymphoma Society in San Francisico in October to YOU! Each mile I run, I will think extremely healthy karma thoughts for you. You will likely be using Gleevac after your bone marrow transplant. This drug helps in recovery and was developed by research funded by TNT. I hope you are able to benefit from it.
Love and peace,
Julie

Anonymous said...

When you're recovering at home, I'm guessing you won't want to cook, so if you'd like the Girl Scouts to organize dinners delivered to you, just let me know when to start them coming, and any dietary restrictions for you and your girls. - Becky E

Unknown said...

Dear Joan,
I was just looking at the picture of you sailing across Camp Yamhill on the zipline, and thought "this woman can do anything!!" I tried to paste the picture here for all to admire but can't figure it out. I'll email you the picture personally, but I think you should post it on your website! Plus, the hard hat's a really good look for you! Our thoughts are with you, of course, but our hands are available too--let us know if we can do anything.
Alicia & Natalie Nicholl

Anonymous said...

Joan,
This is Patty Perez. Kaye Butler sent me this web-site. I'm so glad she did. My thoughts and prayers are with you and your family. If anyone has the moxie to withstand this i know you do. I truly think it is important to be totally honest with yourself and your family and i know that is what is going to help you pull through.

Love Patty

Anonymous said...

Hi Joan, Louise Hays book How to Heal Your Life is an amazing resource!!! I read it and loved it. Her website internet radio station- Hayhouseradio.com is another source of uplifting,too.

You are in my meditations-sending healing energy your way.

Will continue to support you with catalog parties,too.

Thanks for allowing us to share your journey. It is a gift to support you and am grateful you are in our lives!!!

Lori Seeborg

Anonymous said...

Hi Joan,
I got the craziest phone call today and accidently found out about difficult time. I am so sorry to hear what you and your family are going through. This is Pam by the way RagMopp Pam, If you need me to help with anything you please let me know. Nancy, Shari, Lynn and I wish you the best and will be saying lots of prayers for you and your girls, whom by the way look beautiful. Their growing up so much. You can do this!! Love Pam,Nancy,Shari, & Lynn

Anonymous said...

Joan...May God be with you as you start on this journey. It was one year ago today that our Isabella (Bella) had her first chemo. I'm glad that you are so positive as you go into this. Yes there will be lots of tears, but relationships will be strengthened, new ones made, and friends will step-up to the plate as never before.
Love and prayers, Sandra Rodrigues

Anonymous said...

Joan,

You have so many people who care about you. Please feel free to ask for our help as sometimes we may not know what you need or don't need.

In the meantime, please accept any help that comes your way because those of us who offer it would love to make this difficult time easier for you and the girls.

Love from John, and "Candle-Crazy" Karen

Anonymous said...

hi, you don't know me, but i went to high school with karen drain. she sent me the link to your site, hope you don't mind. good luck and god bless. eleni

Anonymous said...

Dear Joan,
I just found out about your journey. What a shock but if anyone I know can fight and win it is you. You are a very determined and positive person. My prayers and thoughts are with you. Stay strong and know tons of people are behind you. If I can help in anyway please have anyone contact me and I'll be there for you. Connie Gillespie ceg216@yahoo.com

Anonymous said...

Dear Joan,
You are in our thoughts and prayers. I know on a personal level that if there is anything we can do to help, "WE" your neighborhood G.S. Troops will be there for you! I will be there. (Hugs Lauren)
Linda, Alana, Skylar, Janai

Anonymous said...

Joan - WE all love you very much and your "Partylite" sisters are here for you. Also, I wanted to let you know - it's OK to lean on me if you need to. I'll be there to cheer you on to a healthier recovery(even though I know you are the best cheer leader around). If anyone can "beat" this - it would be YOU! Love you & the girls, Julie - Your Candle Partner

Anonymous said...

Hi Joan, it's Ginell. I'm so uneducated about cancer and because of my lack of knowledge I'm so scared and worried for you, but as many have said before me... I KNOW, that if anyone can beat it, it's YOU. You are so strong... mind, heart and soul... and so capable of overcoming any obstacle before you. I just wanted you to know that I believe in you completely, that I think about you daily and that I'm sending my love and positive energy to YOU.

Anonymous said...

Joan --
I am so glad you did this blog page. I have been so wanting to talk to you but know how all the others that love you too would be calling and inquiring. I have been thinking of you daily and saying prayers. You are one of the strongest people I know. I admire you! I know your incredible positive attitude will get you to where you need to be. You are an amazing person. You have all of us with you each step of the way. So kick this cancer's ASS!
I'll be looking for your wish list.

Love Angela

Anonymous said...

Joan,

I am / was a student of Margaret Ann's and she shared your story with us. It is so funny that Margaret sent us this blog this weekend as I thought of you over the weekend and had intended to reach out to Margaret Ann to inquire as to how things were going. I love your second opinion and finding this new Doc that brought some light and hope to this leg of your journey. I will keep you all in my prayers and reiki healing. God Bless, Gaitre