sick and tired of being sick, and tired

When I was first diagnosed, I was preparing myself for a rough year. I was brave as I heard the results on the phone, “you have cancer”. I sat on the floor, holding my children in my lap, kissing their heads, preparing to be strong for them and in front of them. I was brave as I drove over to tell my parents, and then my sister. I was brave as I picked up the phone and started calling different hospitals, begging for appointments for second and third options about what my treatment plan should be. I was brave as I sat hour after hour listening to a long list of drugs, side effects, risks, outcomes, procedures. I was brave as I walked in and proudly presented my newly inserted port for the first round of chemo. I held it together through three months of treatment (until Trump was elected and that day I sobbed in my chair as I felt the chemo being pumped into my body.) I was brave when I handed my 3 year old son a pair of adult size scissors to cut off my pony tail. I was brave 3 weeks later when my husband shaved my head down to the skin. I was brave as I approached a make-up counter in a mall and asked a stranger how to apply fake eyebrows and eye liner. I was brave as I drove myself to daily radiation treatment, even when I started to get burned and blistered, I faced it with a smile on my face. I was brave walking around town bald-headed and putting my experience into words in this blog.  I joked with the doctors as I was getting poked and prodded and injected and sliced in a part of my body that nobody has any business being associated with. I was brave as I woke up at 4am to begin scrubbing my body with antiseptic soap preparing for a double mastectomy with reconstruction. I was brave enough to text pictures of my boobs to a few friends hours before they were removed. I was brave when we sat in my surgical oncologists office and he read us the report that the cancer was worse than we expected, stage 3c. I was brave walking into scan after scan, confident that our treatment plan was working and I was clear of any disease. I was brave, but skeptic, as I pursued a clinical trial and had to work around 2 hurricanes to get enrolled before the deadline. I was brave as I went 4 days a week to physical therapy to be stretched and pushed in my frozen shoulder which is painful. I was brave as I decided to tack on a full hysterectomy during a breast revision surgery.  Walking into a party feels brave, I never know what answer to give when people ask how I am doing.

I was brave as I wrote about my struggle with anxiety while I was awaiting bone scan results. I was brave as I called my mom twice in the last month to bring me to the ER, once for an infection in my ileum that put me into a sepsis reaction, and once for shortness of breath that looked like a pulmonary embolism. I was brave as a few doctors came in and said the good news is your CT Scans are clear. And then my radiation oncologist came in on her day off and said “actually, there is something in your lungs where I treated you for radiation”. I was brave walking into 2 CT scans and 1 PET scan in the last three weeks to confirm that there is indeed a very little but very real something in my lungs. They sometimes call it a nodule, sometimes a lesion or a polyp.

And now, I’m not brave, I’m a total mess. Whatever coping skills I had through diagnosis and treatment are not holding up for me now.  I have a 1cm something in my lungs and while there is a chance that it is nothing, I am living and breathing as if this 1cm is everything. We have decided to wait 2-3 months before a biopsy to see if it shrinks on its own. I am heading to MD Anderson next week to figure out a game-plan. On paper, its too little to worry about right now, but I can’t seem to move forward and stop worrying. Waiting to find out if I have a metastasis is way way scarier and harder than having breast cancer. The sad part is accepting that this is my life and what my future looks like. I will have to go to the ER anytime I have a fever over 100, and any odd little growth in my body will show up on scans and cause alarm. Even if this is nothing, it is a reminder that I’m vulnerable to disease and my future feels uncertain. All I can think about is that these last few weeks before biopsy could potentially be the last few weeks before I know I have a terminal illness. My different doctors have offered a range of advice from “try not to worry just yet” to “perhaps longevity is not in your DNA”. All four of my grandparents lived into their 90s, Gigi is still singing away her days at 97. While I accept that I might not live to be old old old, I am not ready yet. I don’t feel brave enough to face this with grace. I’m not brave enough to assure the people around me that I’m fine.

Being diagnosed with breast cancer never felt like a death sentence to me. There are survivors walking around all over the place, there is so much funding, so much pink! I have felt incredibly supported since I was diagnosed but this part feels isolating. How could anyone else understand what this feels like? I wan’t even supposed to be scanned like this for another year. If it turns out to be something bad, catching it early does not necessarily change the treatment or prognosis. A 1 cm metastasis is still a metastasis. It is hard for me to write this because I could be the boy who cried wolf. I recognize that this might be nothing, but what I do know is this is frightening and I’m losing my cool. A few weeks ago my husband and I were high-fiving ourselves that although cancer changed a lot, our marriage was stronger than ever. This new struggle pops up and we are both challenged. This 1cm feels like a gigantic mountain of uncertainty.

Our family had plans to go to San Francisco for 8 days but the fires put that trip on hold. Then we planned to go to Moab, Utah instead but I ended up back in the ER so we canceled that trip too. So now I am taking the kids to North Carolina and joining my parents on their vacation. There is a desperation for me right now to travel, to literally run away from this problem, to get out of this life for a brief second and pretend that everything is ok. I’m not sure if skipping school and leaving town will make me feel better but it’s worth a try! I still feel the pain of those suffering around the world during this dark time, but I have lost the ability to feel like I am an effective beacon for change because I am fighting for my life and I’m exhausted.

 

 

10 thoughts on “sick and tired of being sick, and tired

  1. Laurie W Strong October 16, 2017 / 8:10 pm

    D, I am Addie Strong’s Mom. She went to Newman & played soccer with Kendall. I was an oncology RN in NO. If you were my daughter I would tell you to find the best oncologist in the US for your type of breast cancer. It will probably be MD Anderson or Sloan Kettering. Run, do not walk and do not listen to any other specialists or friends/family until you hear what these folks have to say. I will tell you that cancer does not allow “do overs” or “well meaning, good doctors.” You are right that you are in a fight for your life. Luckily you have the resources to get the best doctors/nurses in the world to fight for you! Illness is isolating. No one can begin to step into your shoes except other cancer patients. Sorry Mom, dad, sister, spouse. This is the heartbreak of helplessness. Diana, of course you are scared. Find your best options. Do not waste precious time. Have your parents call in every favor to get you to the head of the line. You have your family, your youth, your determination, guts on your side. Keep your eye on the ball girl and kick ass! 👍👭

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  2. TLove October 16, 2017 / 8:51 pm

    Fear is a human condition. It is a natural response. It resonates outward from your basest reactionary, evolutionary core. Bravery is but an attempt to suppress fear enough to function. Of course you are afraid. Forgive your fear, it isn’t frailty.

    Also forgive those around you who offer to hand you their reserves. No; they don’t know your suffering. They only know themselves. That means they believe that today you need more than you may have, because they would as well. Take whatever comfort they can give you – it is offered without contract.

    And one more thing: those nagging thoughts that keep telling you you’re asking to much if yourself or others or the universe in general … those thoughts are not the true you.

    Love and peace.

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  3. Martha neilson October 16, 2017 / 9:46 pm

    Hi precious,
    I am Katie Leefe’s mom. If I could just say one thing to you. Travel and sing songs and laugh and dance. Sing loud songs and listen to loud music. You are so strong. Seize the day!
    Hugs and kisses to you and your family,
    Martha Neilson
    Ps
    Eat lots of cake❤️

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  4. Allison Durant October 16, 2017 / 9:59 pm

    You ARE brave. Sharing the way you are feeling is SO BRAVE. I cannot imagine what you are going through but you are certainly doing it with a ton of courage. You are human and if it means admitting you are scared, worn down or whatever else you want to use to describe it, so be it. Prayers, prayers for you and your family.

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  5. Beverly Morris October 17, 2017 / 2:20 am

    HeyDiana, I’m so sorry you’re going through this. I supirt you whether you’re being brave or not. Whatever I can do whether visualizationor yoga or breathing techniques or anything I’m happy to do it. All the support around you I’m sure can be overwhelming….I’m so glad you are continuing to share your journey and I hope through your writing and sharing that you can write it out of your life so this becomes a story many years from now you will share with your grandchildrenIm always up for bringing you a smoothie too. All I know is that love heals and you have so many people sending you love and holding their thoughts of you and their prayers. Love to the moon and back, Beverly

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  6. Evelyn October 17, 2017 / 2:40 am

    I am so sorry for what you are going through. Your blog has been so helpful in letting me know what to expect at times. And just knowing someone else was experiencing the same things gave me comfort and strength. I told myself if you could do it, so could I. Thank you for that. I am a New Orleans native who moved to San Antonio after Katrina. But if I was still living there, I would visit you and give you a hug. Don’t lose hope. I will be praying for you and hoping that 1cm spot disappears. Love to you and your family!

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  7. McKinley October 17, 2017 / 3:10 am

    Diana- I have and will always continue to look up to you as a beacon of hope and change as despite all the uncertainties you and your family have gone through you still have the ability to look beyond you. You are admirable in your selflessness. I know you hear it all the time but shit you are brave, yes in all the ways you mentioned in your post, but your honesty and selflessness are the bravest of all. I appreciate your honesty through all of this. I wish for anything for those scans to come back clea. We are hear for you! ySending you and your extraordinary family Lots of love. Xoxoxo

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  8. Carolyn Curry October 17, 2017 / 3:57 am

    Diana,
    I am sick and tired of all this you are suffering, too. But I am so glad you are expressing it and throwing it all out there. I will not give up thinking about and believing that you will come through this. You have been beyond brave it this fight and so has your family. I believe in miracles and I believe in you.
    We love you and carry you in our hearts. Blessings and love,
    Carolyn Curry

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  9. Nancy Bolton Beck October 18, 2017 / 7:27 pm

    Dear One,

    Putting your heart on paper is brave. You and your cherished family are held up in prayer.

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  10. SeiberStyle October 23, 2017 / 11:47 am

    I’ve been reading your blog for awhile, but haven’t commented. I found your blog when I was waiting for test results and searching for answers as to what was making me sick. Your openness and honesty gave me strength in the waiting and reminded me that I’m not alone. I haven’t been where you are so I can’t tell you that I understand what you’re going through…I don’t have any clue how difficult this time must be for you right now. What I can tell you is that reading your blog gives me hope. It reminds me that there are people out there in the world that are dealing with stuff that is huge and they’re surviving. People, like you, who struggle sometimes to put one foot in front of the other, and yet keep going. You say you don’t feel like you can be a beacon of change but your story is a beacon of hope. You’re in my prayers.

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