Last week I got a call from a woman down the street who I have met briefly. She was calling to tell me a woman she knows was diagnosed with the same cancer I have. Whenever I hear this I always think “yea right, whatever” because it’s never IBC. It’s always something that sounds like IBC, like invasive breast cancer or inter-ductal breast cancer, which are all bad, but they aren’t exactly the same. Most people do not have inflammatory breast cancer…..which is actually a good thing. But this time, I’m sad to say I was wrong.
Another woman, only 38 has been diagnosed. I spoke with her on Thursday and by Friday she knew she was stage 4 because her bone biopsy came back positive. If you want to follow along with her journey, she keeps a journal here:
Many of you prayed me through my cancer journey so I’m sharing this in hopes you’ll do the same for Lori.
And while I’m thinking about it…..if you have been diagnosed with Inflammatory Breast Cancer and you’ve somehow stumbled upon my little blog, I started a yahoo group that is small, but a good place to ask questions. Please feel free to join us, but to be quite honest, I’d rather you not, that is unless you have to. This club is really no fun.
I’ve been going through my “never published blogs.” Here’s one I wrote two months after diagnosis on April 7th. It’s so hard when you’re going through treatment. I hope if you are going through treatment you find hope in my words.
Last night we watched a movie called “We are Marshall.” You’ve probably heard the story….the movie brought the nightmare back to the headlines after 30 some years. A chartered plane with 37 football players along with many local fans were killed when their plane was struck by lightning as it returned from a game.
I was drawn to the character Red Dawson. He was the assistant coach that opted to drive home and make some recruiting stops along the way rather than take the plane that fateful night. After he had the huge task of responding to moms, dads, sisters, brothers, and children in their grief, he reluctantly decides to continue coaching for one year. He gave Marshall one more year of coaching. One long year of rebuilding the team after such tragedy. One year of reminder of such horrible loss.
I’m amazed and in awe of this man for having the courage and the perseverance to carry on. I did a search later and read his story…..here it is if you want it. http://sports.yahoo.com/ncaaf/news?slug=dw-marshall111406&prov=yhoo&type=lgns
How do you carry on with any normalcy when you’re faced with uncertainty. Life is so fragile. In my own life I’m faced with so much uncertainty. I want to believe that through prayer and modern medicine I’ll one day be able to say I’m free and clear of cancer…..but I really don’t know. I hear stories from so many people that know someone….a sister, a friend, a mother who has had breast cancer and is now cancer free…..but then I go to my favorite blogs and read about someone else who has passed away from inflammatory breast cancer. It keeps me keenly aware of my mortality and how much I am not ready to die yet. I so want to be there for my kids and find joy in living. But right now I have to put on a brave front because inside I’m so afraid. At night I climb into bed and cuddle with Jeremy and cry. During the difficult days, not even the sun seems to pull me out of the despair I feel.
But I perservere. I will not give up.
One day Ruth, the Moabite foreigner, said to Naomi, “I’m going to work; I’m going out to glean among the sheaves, following after some harvester who will treat me kindly.” Naomi said, “Go ahead, dear daughter.” (Ruth 2:2)
Cancer is certainly the challenge of my life so far. Early on in my diagnosis and treatment I decided one thing. I wasn’t going to live like I was dying. I wanted to live and I wanted to go about life as usual as possible. I needed to do this for my kids too. I decided I wasn’t going to write them letters as if I was dying. Instead….if per chance I did die of cancer….I decided I would live in such a way that they would always remember their mother in high regards. So I set out on this cancer journey determined that I would live a life of dignity and honor. That if something did happen to me they would always have a great respect for their mother for making tough choices and fully living until I couldn’t any longer. I just wanted that for my kids.
I want to hope I have achieved that at this point in the journey. I have decided that this is how I need to live from here on out. It looks pretty good for me now in terms of the cancer. I can honestly say I think I will get to see my kids graduate and get married. What a great feeling! But now I have the chance to extend this challenge of living in such a way that they will find respect in how I have lived for years to come.
Sometimes it’s really hard to make tough choices. We’d rather take the easy way out. My husband emulated dignity and honor shortly after he graduated from college and had a wife and young baby and was having difficulty landing a job. For about a month Jeremy served up hamburgers at McDonald’s while he waited for the green light in a management position. My brother-n-law who is now a vice-president at a major packaging business was also a morning manager at Hardee’s to pay his way through college.
Sometimes I want to just lay in bed and not accept that I have to get up and get Charis ready for school. There are some days I started attempting the morning routine and then had to call for help. Along the journey I have at times questioned if I should really do the treatment. I would have much rather skipped this radiation and taken my chances. But the truth is….there are three little ones who are looking to me to make the tough choices.
Dignity in the dictionary says this: the quality or state of being worthy, honored, or esteemed
When Naomi and Ruth showed up in Judah they had no money, food or family. To survive, Ruth had to go and pick stray wheat from behind the harvesters. She got the leftovers so they could eat. Boaz found favor in her and eventually ended up marrying her. Was it her beauty or her dignity that appealed to him.
Cancer is quite a journey. We often loose our hair, our breasts, and we are more often tired. But even in our tiredness we can fully live. Do your best, make tough choices…..that is true beauty….that is living with dignity and honor.
“But Ruth said, “Don’t force me to leave you; don’t make me go home. Where you go, I go; and where you live, I’ll live. Your people are my people, your God is my god; where you die, I’ll die, and that’s where I’ll be buried, so help me God—not even death itself is going to come between us!”
When Naomi saw that Ruth had her heart set on going with her, she gave in. And so the two of them traveled on together to Bethlehem.” (Ruth 1:16-18)
Ruth had a hard decision. Go the safe route with Orpah, back to her people and familiarity, or travel into the unknown. Commentaries will say that Ruth loved her MIL so much that she couldn’t part with her. That might be the case, but I think Ruth was willing to travel the more difficult path. She wouldn’t leave her MIL in crisis.
She had no idea where she was going. She knew very little of the God of the Israelites. And even Naomi knows she won’t be having more sons and Ruth probably isn’t going to be “miss bachelorette” as a moabite woman in Judah.
Ruth had a lot of unknowns and her future looked grim and she had every reason to turn back. Who can fault Orpah for making the decision to return?
On this breast cancer journey we don’t really have a choice to travel this path of the unknown. We don’t get the option of turning back.
When I was diagnosed with IBC I had about three weeks of testing before I started chemo. During that time I was sure they would tell me it was all a mistake. It wasn’t. In fact things got worse when they found it in the other breast. I tried to figure out how I could get out of having chemo. I couldn’t. Then with the mastectomies I traveled to U of M sure they would tell me that since the cancer was gone after chemo I wouldn’t have to have mastectomies. I did. Now I am at the eve of starting radiation. I don’t want to do radiation. I will.
I am taking the path of big question marks. The difficult road.
But I’m not alone.
Just as Ruth traveled the difficult road with Naomi, John describes Jesus as the friend of all friends:
“When the Friend comes, the Spirit of the Truth, he will take you by the hand and guide you into all the truth there is.” (John 16:12)
Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” (John 16:33)
Ruth stuck with Naomi. Jesus walks with you.
Food for Thought:
You are what you eat. Not totally, but almost. Cancer can happen to anyone. You are not immune. There are some totally fit, amazingly healthy people out there who have had or currently have cancer. 1 out of 3 people will get cancer in the US in their lifetime. So to say that eating and staying fit is the answer is probably not the case, but I certainly think it helps. I want to think my cancer was completely gone after chemo not just because of chemo but because I ate healthy and did other naturopathic options along the way.
Let me introduce you to a word if you don’t know it: Nutraceuticals
It’s basically the use of foods to keep from cancer and fight cancer, as well as other health issues.
I’m not a raw foodie yet, but I’m getting closer every day. The best nutraceuticals of course fruits and vegetables. All of them have benefits but certain ones are extra beneficial. Like the cabbage family. I have something from the cabbage family every day. This includes broccoli, kale, cauliflower, and the best of the best: brussel sprouts.
In the book: Foods to Fight Cancer they discuss a study that involved looking at people who had died….not of cancer….but of other natural causes and they found that some people have cancer and don’t even know it! The way they had eaten had effected the blood supply to the tumor. The tumor could not thrive because it didn’t have an adequate blood supply.
So for all my friends who don’t like fruits and vegetables….let me share some ideas that I use on my children. EAT THEM OR YOU DON”T GET DESSERT! No really. We do say that but I also sneak. There’s a book out there that is called the Sneaky Chef that maybe you should buy so you and your children can put vegetables into your diet.
Here’s some sneaky things I do:
Shakes: We have replaced ice cream with shakes. Now I do sometimes put a scoop in the shake to make it creamier…..but this is a lot less than 2-3 scoops in a bowl! Considering we divide the blender full between the 5 of us. I also throw in plain or vanilla yogurt sometimes. Whatever fruit I have around. Peanut butter, chocolate syrup, be creative. And I sweeten with honey or real maple syrup…and even natural sugar sometimes. The ticket is tasting it FIRST before adding more sweetness. Some of the things I’ve listed will add plenty of sweetness. Now here’s what’s hidden inside: A small handful of spinach, a few pieces of broccoli, a few leaves of kale. I’m not kidding you! They don’t know and they can’t tell! A dessert and nutraceuticals all at the same time! Can’t beat that!
Now if you’re really daring…..here is a “green smoothie” recipe. They are so easy. No cream…..just some water, ice if you like it cold, a handful of leafy greens and fruit of your choice. Yum….truly….don’t believe me try it! It might be green but it is very refreshing….and loaded with good things for your body!
I also put a scoop of tomato sauce in the blender with zucchini, carrots or whatever vegi might work and spin it up so my kids don’t know “green peppers” are in the sauce. Since they will pick them out if they see them.
And one more thing…..I try to always put a tray of a few vegetables out for the kids before dinner with dip. Then they fill up on vegi’s before dinner. And quite often I choose one they like and one they don’t as much or one they’ve never tried so they get used to it.
So my counsel here is that your mama was right about eating your fruits and vegetables and if you’re lacking it may catch up to you. At least if you do get cancer you’ll be healthy enough for the battle.
I’m realizing this site is evolving and I have received many email from people recently diagnosed. So I’m going to start a thread of advice I’ve learned along the way.
Cancer counsel #1 is to get a second opinion. Not necessarily to determine if you have cancer, because biopsies are generally pretty reliable. I’m talking about treatment here. There are a lot of variations in treatment and it’s good to know your doctor and other doctors are in agreement. When I first talked to my oncologist I was relieved when she told me that second opinions were standard for her line of work. We went over to U of M to meet with a doctor there and I go meet with her periodically to get her opinions. Throughout my treatment both cancer centers have been very willing to work together. My doctors will talk on the phone and send test results back and forth.
Kris Carr from Crazy Sexy Cancer Tips sites a study that people who travel the farthest for treatment are more likely to recover. So get in your car and go meet people who know about your cancer. Get on the internet and find where they are and go to them! If you’re too dazed by this diagnosis to drive, get your family or a friend to take you. In my experience the cancer centers will make every effort to get you appointments quickly.
If you find a doctor who isn’t willing to work with others you may want to look around. Not that they don’t have different opinions….that’s OK. But all my doctors wanted me better and their egos didn’t get in the way. They were open to discussion. That’s the right doctor!
This is my first blog. I won’t be daring enough to send this out until I’ve got this sort of figured out. If you’re wondering about me…..I’m a 36 year old mom of 3 beautiful kiddos. Charis is almost 7, Meleah is 3 and Elijah just turned 1 in January. I’m married to a pretty cool guy named Jeremy. We met while both working at Ichthus Christian Music Festival and were married a year later. I knew from the day I met Jeremy that he was a great guy…..and I was right. He has been such a strong advocate for me in ministry and now in my breast cancer fight. That leads me to the BC. I was diagnosed with a rare and rather serious type of breast cancer called inflammatory breast cancer on February 3rd. I did the usual thing….thought I had a plugged duct or mastitis for several months until I got serious about it and insisted on an appointment at my Ob office. I NEVER ever thought it was BC. I’m so thankful I was persistent about the appointment because we caught it early. It’s in both breasts, but did not spread and thankfully is not in my bones, lungs or brain. It is an extremely fast spreading cancer….quite often by the time it is found it is often too late. Seriously. I hope to eventually advocate so that more receptionists understand how serious IBC can be.
On another note…..I’m a birth junkie. It has been my passion since my first daughter was born. So you might hear me gab a bit about that here. But mostly I think I’ll just share my spiritual reflections through this dark journey and how I’m growing and healing, emotionally and physically. It will be good accountability for me and how God is changing me and moving me and deepening my faith in Him.
Thanks to all who read and travel this road with me. I just feel God walking ahead of us clearing the path.