‘Cancer – 50 Essential Things to Do’ is a book by Greg Anderson which I used as a guide to journal what I needed to work through in the immediate aftermath of being diagnosed with Stage 4 Inflammatory Breast Cancer. At this point I wasn’t quite sure what exactly was going on. Did I have Stage 3 or Stage 4? Thinking I had Stage 3 I thought people beat this all the time and so can I. Hearing I had Stage 4 made me realize that this would not be so easy.
Quotes from the book will be in italics.
Ask Your Doctor These Questions (3):
Precisely what type of cancer do I have? Inflammatory Breast Cancer. What is it exactly? Stage 3B (next day told it is Stage 4 as it has spread already to the bones and the bone marrow).
Has the cancer spread beyond the primary site? If so, where? It appears to have spread to the arm and gland in the neck. It has metastasized to bone marrow and bones.
What tests did you use to determine this diagnosis? Ultrasound and biopsy; and bone scan and CT scan.
Is there any indication that a second pathology report is needed? No.
*Do not be intimidated by medical personnel or the process. You are the one in charge.
Are you recommending additional tests? What are you looking for with each test? Yes, there will be CT scans to see if the cancer has spread anywhere else. Mugga tests will be done to check the strength of the heart for radiation. The bone marrow will be tested to see why my blood is so low. I will need blood transfusions.
How certain are you that the tests and the resulting diagnosis are accurate? Absolutely certain.
What are my treatment options? Which ones do you recommend? (Record these treatment options in precise detail.) Blood transfusions done February 16, 2006. Doctor is recommending chemo of FEC (Fluorouracil, Epirubicin (Red Devil), and Cyclophosphamide), followed by a mastectomy then more chemo and then radiation. Told all this treatment has changed as I am not Stage 3 but am Stage 4 which changes everything. Now it is no longer curable it is terminal and so therefore only treatable.
What does the doctor studying inflammatory breast cancer at Health Sciences Centre recommend for treatment? Are they all on the same page regarding treatment? All Cancer Care doctors are involved in the study. I need to look into further studies myself.
What is the treatment information on my type and stage of cancer? Initially Inflammatory Breast Cancer Stage 3B; now diagnosed as Stage 4 so all treatment changes as it is now palliative treatment which will include chemo, herceptin and pamidronite.
Whom would you recommend for a second opinion? Dr. Grenier at Cancer Care Manitoba at St. Boniface Hospital.
Is doctor a Board-certified Oncologist? Yes she is.
What are treatment therapies? Chemotherapy (how often) six cycles every three weeks consisting of FEC. Treatment changed as staging has changed, above treatment no longer valid.
Radiation?
Hormonal Therapy?
Immunotherapy?
Biological response modifiers?
Herceptin?
Questions to ask Dr. Grenier on February 15, 2006.
Get A Second Opinion (4)
Dr. Grenier is my oncologist and she is my second opinion after Dr. Gillespie (the breast surgeon).
My oncologist will have the most up-to-date information on treatment options for the type and stage of cancer I have.
*You do not have to accept medical arrogance.
47 comments:
Renee, I'm confused about this date: "Questions to ask Dr. Grenier on February 15, 2006." Might you have meant 2009?
I'm very sorry that I haven't been coming around more. I've been overwhelmed, but I'm trying to make that better, so I hope to visit you more.
Wow. It's hard to know what to say, to write in response to this. The picture at the top is apt -- although I'm imagining you as Jonah, who got swallowed by the whale but then was coughed back up.
Many blessings and much love sent your way from me.
Hiya. Been a long time. Hope you have been ok.
Looks like I have a lot of catching up to do on your blog :P
The book is right. When it comes to medical things just keep asking questions no matter how silly they might sound :)
Be like a 3 year old who just found out how to use the word "Why" :)
That bottom line makes me smile....
pft!
Love you
xxx
Hi Renee,
Just wanted to let you know that I am thinking of you all the way here in New Zealand (my new home for a while).
I am waiting for my friend to give me permission to quote her on my ching blog! I hope you will take a peek later this week. I love hearing from you xx
sighhhhh, i don't quite know what to say dear Renee, i so hate the medical cancer wheel myself, it can be so sterile and one eyed... Have you ever considered combining supportive alternative therapies? Do you have a check list for the emotional and spiritual essentials too? Do you have to accept what the doctors say as gospel? Because my surgeon says that every single patient is different and he says that statistics are not relevant to the individual, but Sighhhhh, cancer can be such a dirty word maybe if we hyphenate it can-cer hmmm a bit more like dis-ease... i'm all for less threatening language myself
((((((((((HUGS)))))))))) and *kisses* and *kissez* and ((((((((((HUGz)))))))))) to you my friend xox
Renee - you hear this all the time - but you are amazing. I can't imagine thinking clearly at all after getting this news. So you were diagnosed in 2006? And here we are in 2009. :) I am praying for many, many more years for you. You are feisty enough for decades, I think. Sending you lots and lots of love. xoxoxox Pam
Oh my goodness Renee. I was clutching my face reading that! I don't want to pry, but how did you find out you had cancer in the first place? A lump? A fall? Fainting spell? Yikes, I am so glad you are still here and kicking!!
WOW! I am so happy that you are sharing your "initial" days with us. I don't think anyone can accurately imagine what it is like to sit in that room, ask those questions, and hear the answers!
I picked up a copy of Greg Anderson's book, at your recommendation! What an inspirational guy - given 30 days to live, how many years ago? Amazing!
Love to you! Hope Josephine got spoiled badly yesterday!
Love audrey
xoxoxo
Hi Rene. I'm back in blogworld. I get distracted so easily. I hope your doing okay. Happy belated birthday to dear Josephine.
Terminal is such an ugly word. They should not use it.
So all of a sudden, this ocean voyage turned violent and frightening with the threat of being swallowed up whole. Yet your voice remained calm and steadfast. Determined. I'm grateful you had this workbook to keep your thoughts focused and organized. I know I've said it a million times, but the sentiment has not diminished -- you are an amazing woman, Renee.
Renee...
Reading you pages from the book...put me in a state to understand more about the stage 4. Thank you for sharing...takes alot to let people into the world of cancer and share the knowledge, fear, and pain. Kisses my friend...
Smiles,
Sonia ;)
Well, jeez, Renee. To be told it's 3, and then to have that ripped right out from under you and to be told it's now a 4.... Curable to all of a sudden incurable. Crap to hell. I would have crumpled and ripped this book to shreds. But you. You are a strong and brave. You don't know how grateful I am that you are still fighting.
Love you, sweetheart.
Oh my gosh Renee, that is very useful info. I can't believe you've been fighting this for so long - you are so strong and I am so glad I 'know' you.
Hugs and prayers for a good day today,
Meg
xoxo
This is huge and a big hug for you.
It's a fulltime job for you including overtime. So much to investigate and learn.
You can do this.
best wishes
Ribbon
Good morning, dear Renee. Life is terminal. Cancer SUCKS! You are a fighter and a questioner and a winner and a BLESSING to all who come in contact with you. I hope your pain is manageable and tolerable. I hope you find joy and laughter, and a chance to escape from the pain and reality of this monster, each and every day.
Love ya,
xoxoxoxo
Angela
it seems to me that book was one of the tools that allowed you to be strong and fight. Kind of like a best friend by your side cheering you on and telling you not to give up because you're in charge of your treatment, emotions, etc.
Still, shit. Tough road my friend.
I'm so glad you're going strong and kicking some ass along the way ;)
love you!
Lolo
This is a wonderful example of how to use a clarifying tool to help you, in the midst of confusion and emotion. The questions are so good, so clear, yet you obviously brought your own clarity and honesty to them. It's a blessing to see how this helped you; have you share this with the author? I will bet that he would be thrilled to know. Blessings to you!
Is that how you feel, love? As if you are going into the mouth of the whale? I cannot begin to imagine. You see that little shell being pulled by seahorses? That is all of us, your followers, strangers no longer who you have touched...all of our prayers spiraling up to heaven, twisting around eachother, becoming a cord of three strands...you have changed us all Renee. Every one of us is better for knowing you. Sending you all my love, Deborah
Renee you are a brave woman to ask these questions.
It must be so difficult at times to look this cancer straight in the face. Your soul, your spirit has such grace around this.
I think of you everyday.
I will support you everyday.
I will be your friend and love you every day.
Pattee
I really wish I knew what to say. I am at a loss right now. Just know how many people you inspire daily and how many people are supporting you and this awful fight♥♥♥
Hugs,Darla
Hello lovely Renee! Thanks for making me smile in my blog.
They way you've written these is so matter-of-factly that I sense a good sign of recovery. Am I missing anything here? You're a very tough and wonderful person Renee, you can even tame cancer cells! Stage 4 is no joke yet you're still the happy person who embraces life and inspires others who have already stopped dreaming. And I agree with the book, you're the one in charge. Though I hope you're alright.;)
By the way, pardon my ignorance but isn't the illustration about Pinnochio?hehe
Yes the picture on the top is apt I think!! How terrifying Renee - to have hope ripped away like that. It broke my heart to read it - really. I understand ll the logical reasons this could happen - but none of the moral ones. I too think terminal is a word that should be stricken from the illness vocabulary!!
Know hon I am with you, pulling for you and loving you too!!
Huge hugs and love, Sarah
Hope Josephine had a rip snorting good time!!
I am impressed with your clarity of thought when in this situation. I don't think I would be able to be so good. This book is such a good tool but you are the one using it in such a strong way. I send virtual hugs and good thoughts to you today and every day.
Sarah x
That explains the date. I thought I've traveled back in time. So it has been more than 3 years now? How are you feeling today, I mean physically?
Uhmmm, alot of people should envy you. Imagine undergoing a painless rhinoplasty anytime you want.hehe
Renee, are you giving us a calendar of past events here?
We are in 2009 and you are trying to update us?
I just received the Renee award from Lola, still waiting for me to post it properly. You have started a whole lot of stuff with us, good thoughts and more good deeds than you will ever know. Your children and husband and grandchild are there with you, as well as your sisters, and your whole family is teaching us big lessons about living and giving, and loving every one and every day.
Thanks for sharing that info ... I just learnt a bit more about you ...
Renee,
You are such an inspiration to me. How brave and strong. Keep fighting and those of us who care are fighting for you too, lovely lady.
Sending a hug and how wonderful to have such a beautiful gift in the granddaughter of yours!!!
Xo, SuZi
Hi Renee, I had a lump/mass removed in Oct 2005. The whole thing from being told my mam had something on it, to the ultrasound to the surgery was only 3 days. And I was going to have surgery anyway the day before I was told about having a mass..so they did both at the same time. I didn't have time to be scared, it all went so fast....and it was nothing, but they said it shouldn't be there and it was removed.
For a long time afterwards.. I was stuck with all the after thoughts...thankful that it wasn't the big C as my Dad called it. Angry that I had to be cut up ( it looks nasty) for nothing.... Guilty for being angry when I should be extremely thankful that it was nothing...angry again because I don't have a dime to my name and I have a huge hospitol bill that I have to pay every month till 2011..and it was for nothing and what if "IT" comes back..I can't afford it..... and OH so SO horriably GUILTY for being angry when I should be ECSTATIC that is was nothing.....and no one to talk to about these foolish feelings.
I never wanted to write this, but I am because I didn't know there were books to guide a person thru something like this.... I pretty much don't think about it anymore..till the 28th of each month..when I hope I've sold enough off ebay to pay that bill.... and the bill is much better to deal with than the C,,but when you don't have any money..... the anger,, the guilt..the guilt hurts the most.
I wish with all of my heart and body and soul that yours was nothing too. Hugs Rene
Oh, and when mum was first diagnosed it was thought to be a stage 2 ovarian....go figure, only after surgery (in which they thought they had got it all) and pathology did they find it was bowel and stage 4.....and now lung...so yes, kind of understanding your feelings then. From the other side.
xxxxxxxxxx
Hi Renee,
I'm trying to get caught up on all the posts I've missed while I was away. Your honesty and willingness to share such intimate parts of your life is so courageous. You are the shining star of hope and love.
Thank you for sharing with me and everyone else who reads your beautiful posts.
Hi Renee,
You are such an inspiration to everyone, for your strength and courage.
Sending my love, hugs and positive vibes your way.
Hugs
Carolyn
Renee, you are factual here. I think one would have to be in the face of the change of diagnosis. I've got nothin. You've got all the grace. I've got a child's perspective, not fair, kick ground and all that. Much love to you and strength. xo erin
renee, honestly, this was tough to read. it brought me face-to-face with a reality for you that it is tempting and sometimes too easy to ignore; to instead believe you are just fine all the time and enjoying your wonderful family and friends and witty irreverant humor and life.
still, the thing i choose to focus on in this post is the princess in the back with the seahorses and rainbow blessing and protecting her. that is where i place you.
i took some time just now to read many of your comments. what love. you have a healing circle all around you. and renee--again, i know this may sound like hyperbole--but i think of you every day and i've begun to pray for your recovery. i've begun to BELIEVE.
and i think that counts for something.
love
kj
You are a wonderful lady Renee. How crap to be told stage 3b then stage 4 which altered everything. Love and hugs.
renee. In the light of my loss only yesterday. I can not tell you how much strength you resinate. And the greatest words ever spoken come to mind...
"...NEVER give up. NEVER surrender..."
Bright Blessings to you. Healings and white light to you every day.
xoxo Tracey
Tough post to read Renee, a harsh dose of reality for those of us that so easily think of you as such a bright spot in blogland with problems, yes, but nothing that bad.
As difficult as it is to read, thank you for sharing this with us. You are still that bright spot in blogland, but now we see you with a shield and a spear in your hand doing battle against this tenacious foe.
In the picture, I also see you as the princess on the shell boat being pulled by seahorses, on the waters of your everyday life. The rainbow light is giving you strength for your inner warrior (whales) to vanquish all those nasty cancer cells that can make the waters so turbulent.
Hugs my friend
Oh Renne, I admire your strength and courage. Like Bella I would have needed someone to think about the disease for me for I may have been overwhelmed by the physical sumptoms alone. You are a true inspiration to those who suffer and need an injection of hope.
Quite right, you don't have to accept medical arrogance, especially when you are the patient and you are in control, so to speak. Many thanks.
Greetings from London.
Dear Renee,
I'm thankful for your willingness to share your experience. It is a blessing me for others to read your journey. You are a pro~active person and this post shows it.
I was not aware of the book: Cancer – 50 Essential Things to Do’ by Greg Anderson. It has really good information, based on the two times you have recently mentioned this book.
Don't you think it is also good to have another person, paper and a pen while at these dr. meetings? Even once at one appointment for my mom, I asked if I could bring a tape recorded, because the info was SO over my head. I had to re~listen 5 times to understand.
You have been wise to gather all the important information. Also, to get a second opinion because that is when you found Dr. Grenier!
How do you feel today lovely one?
Sending Big Love,
Constance
Oh, Renee, what a difficult time you had. I did not know that. Thank you for sharing your story.
Love, Barb
I just adore you, Renee! You'd fit in perfectly with my family :)
I understand what you're going through; my grandma had the same type of cancer. We were very close, so I went through it all by her side. And boy was she a fighter! She defied all the odds and refused to allow the cancer to have its way.
Unfortunately, she also had a whole slew of other medical issues that caused complications. If it weren't for that, I wouldn't be surprised if she were still here fighting :)
Have you thought about trying a hyperbaric chamber for oxygen therapy? I'm still learning about it, but from what I've read so far, it seems pretty amazing.
Anyway, I'll be back soon to read more :) *hugs*
Jen
Renee these are so hard to read. I wonder sometimes if it's worth all this invasive treatment. If this date (2006) is right then I guess it was worth it because sweet girl you are still around to tell the tale and you tell it with grace, a cool head and composure but I'm betting you have your 'moments'. You are indeed a brave soul. My heart goes out to you.
“The story of the whale swallowing Jonah, though a whale is large enough to do it, borders greatly on the marvelous; but it would have approached nearer to the idea of a miracle if Jonah had swallowed the whale” … Thomas Paine
“I would find out why I only had a year left to me and I would find a cure for what ailed me so I could continue to live. If I could not find a cure, I would try to be at peace as much as possible and get ready for the next step in my evolution.” … Renee Khan
I think you just swallowed that whale! xoxo
Shelly my eyes are stinging and my soul is singing.
Thank you for being wonderful.
Love Renee xoxoxo
Renee,
I've read and reread this post several times now, not knowing how to comment on your straight forward, brave, and open sharing for us to learn from. As you know, I love you and am so grateful for that spirit of yours, that teaches, inspires and guides so many on what true grace means. The combo of your words describing the cold hard facts of your diagnosis, the tool (book) that helped you in laying them out, and the artwork that you chose to accompany are so perfectly companioned - once again you blow me away! ever living peace and love, Karin
I love you so much Renee.
You are very special.
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