The In Between

UsVa2023

After the diagnosis; before the prognosis

You haven't slept for three nights. The thoughts keep you awake. All you know is there is cancer inside your body. You hope it's just contained in your breast. You don't have a prognosis. You don't know the stage. All you know is that it's called Invasive Ductal Carcinoma.

 

You sit in the dark and cry at night long after everyone else has gone to bed for the first few nights. Then, around day three, you decide you have to continue on. You have to live your life between appointments, face the battle, and take care of your people. So you make yourself cook dinner. Shop for groceries. Plan birthday parties. Go to work. You fight the thoughts every single minute of every day. You fight to be productive.

 

You find joy in lots of things. You manage to smile. Real smiles. Even laughs. But sometimes you need to stop and cry.

 

You've gotten more news, and it's hopeful. They assure you it's early. It's not aggressive. But there's still a lot of unknowns and you have weeks more waiting to do. WEEKS.

 

You're undressing and your young daughter notices your biopsy marks and bruises. You poorly explain to her that it's sick, but you're seeing a doctor. You say it gently without worry, so she won't worry. You stuff your bruised breast into a bra and wonder how she'll react later when the scars are bigger, or if the breast or nipples are gone. 

 

You notice people treat you differently. People that didn't talk to you before are friendly now. Your family has anxiety, and to manage it you try to hide yours. You know it's not healthy. You do it anyway. You sometimes feel misunderstood. Maybe you shouldn't have told anyone. Too late.

 

You see another doctor. His nurse is sweet. She cries in the room with you and hugs you. He tells you you're going to beat this, but you have to fight.

 

You start to learn things you didn't want to know. About receptors and proteins and chemo and radiation and never in a million years did you ever think you'd see a plastic surgeon but now you have one. And you have ten appointments scheduled in the next three weeks. It's going to be a long haul.

 

And you feel guilty. For having cancer. And you know you don't need to feel that way, but you do anyway. You don't want to let your people down. The resources you were given say it's normal. The doctor says you'll need something for depression. Instead, you just eat tacos….

 

You talk to survivors. They're so helpful. They hold your hand and let you cry and tell you nipple jokes and show you their scars. They assure you, you got this.

 

They tell you what the radiation is really like. How they literally thought their nipple would fall off. And how they endured it every single weekday for six weeks straight; you had no idea it was that intense. They tell you how it hurt and how to soothe the pain and how their armpits turned black. And sometimes they tell you they endured it all and it still came back.

 

And they tell you about chemo. How they went three days a week for six months and had surgery for a portacath that they still carry inside their body. They tell you how much weight they lost and how many times a day they puked and show you pictures of how they looked without hair. Or eyebrows. And they tell you they love you, and it's hard.

 And you wonder if you'll need to do it, too. If you'll have to endure radiation or chemo. And what will happen to your job. And insurance. And how will you pay the bills that are already rolling in from the first two appointments if you don’t have strength to work while you're fighting for your life.

 

You wonder what your kids will think if you lose your hair. If you're weak. If you're sick all the time. You don't want them to see you suffer. You pray they don't have to.

 

By now you've heard about hormones and blockers and chemotherapy drugs you can't pronounce; they say you'll need to take them maybe for the rest of your life. The side effects are scary. You wonder how much it'll cost.

 

You hear about medical menopause caused by chemo. You wonder if they will take your ovaries, too. You wonder how many surgeries you'll have. 

 

The survivors talk about how it affected their marriage. Yours is strong but you know that your femininity and womanhood are going to change, and you pray the two of you can embrace it together. He assures you, "in sickness and in health."

 

And you weigh your options. Pros and cons. Lumpectomy or mastectomy. You make up your mind, then change it.

 

And you wait.

 

And wait.

 

And wait.

 

And while you wait, you discover your friends all over again. You see them praying. Cards that make you smile. Spontaneous scripture by text. Gifts and packages of love. Books and devotionals to read. Pictures to hang on your fridge and fuzzy things and candy and blankets and things that smell good. Friends showing up to get your kids home from school. People near and far offering help, love and support. You feel more love than you have ever known. And you're filled with gratitude for your tribe. You can't repay them, not yet. But you'll try someday.

 

And you hold onto the promise in Romans 8:28

"And we know that all things work together for good to them that love God, to them who are the called according to His purpose."

Tamiann

Oh, my... you nailed it with this post. You are in a hard spot - the waiting and anxiety is the very worst.

Once your treatments start, you will see some change - in how you handle it, in how others around you handle it. You will have good days and bad, and they are all OK.

Don't get me started on the medical bills🙄... but if you see ANY challenges in handling them, it's important to talk with the billing departments right away and work out a plan with them. Most hospitals are very flexible and will work with your budget. They know how cancer impacts their patients, and they have plans in place for that very reason.

Thankfully my boss has been very flexible and has worked around all of my appointments. I was lucky - I didn't end up missing too much work, although I'm still having regular appointments for follow-up care so it's an ongoing challenge. The radiation can be brutal, but for some people it's not so you might be one of the lucky ones.

All I can say is that you will get through this. It's called one day at a time, and you do what you have to do. Your family will worry because that's what families do. Eventually it will become part of your "normal" family dynamics and the anxiety will subside a bit, but the support and love that they provide will always be there for you. My husband has been - and continues to be - my rock. He's my shoulder to cry on, and my pillar of strength when I need it. He's also my coach and will kick my butt back into gear when it's time to do so. You need all of this - if you have a strong relationship now, be open and tell him what you need so he can give you what you need instead of what he thinks you need.

My comfort verse through all of this has been Isaiah 41: "Do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand."

Hang in there, my friend... you will get through this.❤️

UsVa2023

https://csn.cancer.org/discussion/comment/1705240#Comment_1705240

Thank you. It really helped me to get my thoughts down. There are so many changes and things to think about, I wanted to document this part of the journey.

I appreciate your insight and pray the best for your journey.

Basils

I feel the exact same way. It's been 3 weeks since my diagnosis and I still have 2 weeks until my surgical oncologist visit. The waiting is brutal and maddening

UsVa2023

https://csn.cancer.org/discussion/comment/1705364#Comment_1705364

I'm so sorry. I had my diagnostic mammogram on 3/28. Biopsy 3/29 and confirmed IDC on 3/31.

I have seen two general surgeons, a plastic surgeon, and radiation oncology. I have medical oncology scheduled Tuesday and the following week back to the general surgeon and genetics counseling. It's painfully hard to wait. They tell me it's early but until I get the oncatype test and the results of the lymphnode biopsy, I'll be anxious.

I will pray your appointment goes well and you have a great care team

LovesPrimes

Words are failing me right now. I try praying. I try journaling. I try talking to loved ones. But this expresses so much of what I am going through.

gemini123

Thank you for putting these emotions down as words. Echo my exact sentiment.

coedward

Thank you for posting, I also can relate.

IMHO, guilt is useless, as it implies you did something to create the situation and drains the energy that you need to move forward. Let it go when possible...and ENJOY YOUR TACOS while you can!

You are fortunate to have a supportive family; some of us do not, so we somehow summon the strength from other sources (my pets are my rocks!), and work to establish new resources and contingency plans.

Some suggest not researching your diagnosis, but I find the credible websites (American Cancer Society, Breastcancer.org, Mayo Clinic, etc.) to be EXTREMELY helpful, even if I end up printing pages and reading them offline (while waiting for an appointment, during treatments, etc.). Preparing before appointments keeps me from getting too overwhelmed and gives me the basic understanding to apply it to my personal diagnosis; when it does not apply, sometimes it is a relief to know that it could be worse.

Perhaps I'm overly optimistic, but I believe that *some* time between diagnosis and start of treatment is necessary to process the information and start to adopt the "New You" that few of us ever thought we would be. I would not have voluntarily close cropped my hair, or (as a large-breasted woman) ever taken the time to research breast implants, or considered the availability of oncology services in my long-term housing and retirement plans, but here I am. I am grateful to have options and choices, and perhaps eventually have the experience and wisdom to help others, as well.

I hope we all can find joy and peace in the process, maddening as it is!