My heart continued to race all day Saturday and got worse as time went on, despite spending the day quietly sitting in my chair while the children played. I did nothing more strenuous than sorting the long-accumulated “to file” pile and feeding all my previous hospital, chemo, radiation, and physical therapy bills and receipts into the shredder as my emotions fought each other – anger that I had had to have so much treatment, relief at shredding the reminders of the past, and sadness that I needed to do this, to save C from having to do it later. I’m not sure why I kept the receipts so long, physical reminders of difficult days, except that I had some vague notion of needing them “for taxes.” I don’t need them for taxes. Our federal health insurance plan has covered everything but my consultation at Sloan-Kettering and a good bit of physical therapy for my weakened back and lymphedema. And my lymphedema sleeves, but I just smiled when I saw those and the pretty patterns named on the receipts.
By 5:30 I couldn’t sit still while my heart raced (and my breath was short, as if I’d been running a 5k there in my chair) any longer. I woke C, sleeping through a light bout of the flu, and left the boys with him while I went to CVS to check my blood pressure, as a well-known side effect of the nexavar is increased blood pressure. It was high, but not scary high, so I emailed the clinical nurse handling my clinical trial and called the oncology fellow on call. When she called back, she was firm: Go to the E.R.
When Lisa and I got there (never go to the E.R. alone! you ALWAYS need an advocate!), my blood pressure was 195/138, and I looked over at her in the waiting room and said lightly, “Get comfy, Lisa – they’re not going to let me go home anytime soon.” We were rushed through the intake process and not an hour later I was being wheeled in for a CT (with IV contrast pushed into my arm, lymphedema be damned, but I had no choice). We called Colleen and told her that I was really sorry, but I’d miss the novena tonight, and settled in, ginger ales in hand, trying to talk lightly and pass the time as if we were at the coffee shop instead of in a sterile white room with blue curtains and a terrified man in a PCP rage strapped to a bed nearby. His screams shook the ER, but the nurses just shook their heads and smiled sadly, saying, it’s early for this tonight.
We settled in, tried to ignore the rage next door, and met the next shift of nurses. We didn’t get a chance to say goodbye to the one who had both calmly brought the restraining straps to the nearby ruckus AND put the IV in my arm without blowing a vein (yay!), but I will remember her, her kindness, and her friendly laugh for quite some time — her name was Marissa.
At 8:59, the attending physician came back in and told me that all my tests — blood, x-ray, and CT — were clear for pulmonary embolism and pneumonia, that my blood pressure had returned to a high normal, and that I would be discharged after the last test for congestive heart failure, came back (it’s a risk because of all the radiation I had to my left side); I wouldn’t have to stay after all. She was careful to answer my questions about the CT carefully, saying only that it was negative for pulmonary embolism and pneumonia, and that I need to follow up with my oncologist on Monday.
Whatever. Monday is Monday. That means I have today to rest and play quietly with my boys, and to enjoy the warm sun through the window, regaining strength as I take a break (again) from the medication and allow both my heart and my feet to heal (yesterday I was reduced to fuzzy slippers, and today it is too painful to take more than the necessary steps). And to do something other than filing today. As I told Lisa yesterday, “I spent the day doing paperwork. I’m not dying today. I’m not spending my last day on earth doing paperwork.” Yes, mundane tasks will always need to be done. But they can be balanced with joy and hugs, and today I will try harder to create joy, and to give hugs.
And, yes, I continue to pray. And yes, I noted that I was given the all-clear at exactly 8:59, as Rebecca called my iPhone as friends left the novena, and I was able to call her back and tell her immediately that I was okay, that I was going home, and that there was no reason to worry.
Truth be told I might have gotten a little excitement from the PCP rage drama – LOL. Glad you are back home and not doing paperwork. In your honor, I’m going to try and make grocery shopping fun today.
It was the weirdest thing — apparently they can tell what drug it was by the type of rage — yikes!
Good luck with that.
You are such an inspiration. Your writing is beautiful. Honest. Raw. You have so many gifts to share with the world. I know you’re tired. Stay strong. Fight. Love. Hugs to you.
Thanks, Michelle. I am tired. Perhaps a little rest.
Double ditto what Michelle said!! Really, your story inspires me to address my challenges (so mild compared with yours!) with similar acceptance, humor and grace. Thank you, thank you, thank you!! Big love and hugs.
Soak up the sun and the hugs today, and know that so many of us are sending positive, hopeful thoughts your way.
You were in my prayers during that time, and every day. I hope your days are filled with normal in the coming week. Lots of Legos and little boy hugs.
I’m also good in the ER if you ever need back up. I’ll send you my number.
You are so very brave. You know I am not a prayer, which is why I haven’t attended your novena, but I have been thinking about you each night. (But I kinda always do anyway. 🙂 )
Do you know why you have such amazing friends like Lisa and Rebecca? It’s because YOU are such an amazing friend. I don’t know that you need to try harder to create joy (although I applaud your efforts to do less paperwork), because you always do. I have been on the receiving end of some wonderful calls and emails from you when you are thoughtful and kind and focused on things and people that aren’t you at a time when you could very rightfully not think about those things at all.
All of which is a long way to say that you create joy every single day without even thinking about it. I know that every single time I hear from you, it makes me happy. And I hope I’m on your list of ER buddies, because I’m available day and night.
Not sure about the “amazing” part. At noon I called Susan to suggest a playdate/dinner. When I spoke with her after the novena, I told her if she hadn’t wanted to see me, she could have just said so – no need to create the whole hospital drama to get out of it!! ((wink))
I’m thinking of you and praying for you all the time. I’m also good for ER trips, accompaniment to CVS, and sitting in the sun soaking it in. Up for a visit this week? Many hugs. Much love. Constant prayers.
What others have already said. I just wanted to add my voice to the chorus!
Wish I had known about this when we were tweeting together a few hours ago. But I hope I made you laugh with inane tweets about radioactive makeup. I am joining in with your novena informally between 2-3pm here everyday. Love and hugs from across the miles
Susan – I hope you’re having a joyful, peaceful day today.
I ran a 5k today, for us. For me, trying for a pretty fast PR, which I think I got. And so thrilled to be able to choose to run faster than I ever have at this distance and not be dealing with breast cancer stuff that kept me out my running shoes. And for you, I pushed through the hard places inspired by you and how you push through a challenge you didn’t choose. Your post this morning was the last thing I read before heading out. I ran for both us us. I’m proud of me, and I prouder of you. The strength, grace, calm and wisdom you have and share are nothing less than awesome. Enjoy today and the lego people! (the short real ones and the small princess types)
I hope you spent today soaking up the sun and loving your sweet children and wonderful husband. Keeping you in my prayers.
Whew. Good to hear Sus.
Sending you love, light and positive healing thoughts from Ireland tonight. You are an inspiration Susan, your strength is in your ability to allow the world in, please know through it all you are being held in hearts around the world. I will light a candle in the darkness in a little country church here and also in a beautiful little Spanish church in the old town marbella when I am there next week. For you.
Wow. Thank you. (all of you)
Ditto to what everyone has said above. You are an inspiration. I hope your day has been filled with peace, love, and most of all joy.
I will light a candle for you and say a prayer from Australia…And hope for peaceful days with your kids and less hospital stuff.
Thinking of you at 8:54 and hoping that you will call me anytime you need a friend!
Glad you didn’t have to spend the night in the ER. Next time your heart races, may it be because you have just received good news.
oh goodness, I’m glad you’re ok. Hope you have a restful night full of good sleep.
I hate the “pounding in the chest, the pressure in the nose, the ache in the teeth, the pulsating at the temples, the feeling like your body is a solid rocket booster waiting to take off”-type feeling that increased blood pressure represents. I know this feeling well & it is no fun. I’m so happy your pressure is back down again, Susan.
I love novenas. They are so powerful.
Are you familiar with the Cukierski ministry? Wendy is a friend of mine… such a wonderful sister in Christ. Please google her, if interested, and look at her website. Such a miriad of beautifully holy & Catholic items I know would be a blessing to you. (No, I have no monetary interest in the Cukierskis… Wendy & her family have simply been a blessing to me in all my needs).
Sacred Heart of Jesus, have mercy on Susan.
Immaculate Heart of Mary, pray for Susan.
Saint Joseph, pray for Susan.
All the choirs of angels & saints in heaven, pray for Susan.
Archangel Michael, pray for Susan & protect her.
I’m sending love and hugs and trying really hard not to worry! May all your nurses be Marissas.
Also, everything that Stimey said. Love!
Susan, I just read your tweet about the endless pool and having that in my mind as I read this, I am hoping with all I’ve got that a way can be devised for you to have the comfort and freedom of worry that the water allows you.
In addition to thinking of you as a warrior, I am going to think of you as a siren and imagine you with power, joy and maybe even a bit of mischief in the oasis you so richly deserve.
I’m so sorry you’re having to go through so much!!
For the foot issues, I have a pair of memory foam flip flops – i highly recommend them. Also, this may sound weird but my daughter is using my feet for her science project and when they start to burn, we brush on a mixture of 1 cup water and 1/2 cup henna powder.
Boil the water, mix in the henna and cool. It feels like somebody is blowing a cool fan on my feet. It’s wonderful and is cutting down on the calousing too.
ps – the mixture at those proportions should last about a week. I brush it on with a soft foam brush.
I really hope your feeling better and the racing heart has calmed down. My wish for you tonight is a peaceful sleep with no worries. Totally weird that I don’t know you and think of you so often. Praying for you and your family.
I so hope (and pray) that your followup with the oncologist today gave you some reassurance about that CT, and that you’re feeling better, too.
It was so interesting to here your experience in the emergency room from the patient perspective. You see…I am a nurse in an emergency room and we get lots of people like the friend you had next door to you and I always wonder what the other “normal” patients think about when they have to hear something like that next to them. Also interesting to hear about your experience in general.
I am so sorry that you are going through this. From the short time that I have learned about you, I can tell you are an amazing person and your story has touched me greatly. Thinking and praying for you often.
*hugs* and prayers to you, my friend.
Susan, I hope you are feeling better today. I know how difficult this must be but hoping you are feeling up to some hugs from your boys.
I have been reading your posts for a few years now and have never commented, but want to tell you how much I love to read what you write. Your love for your boys is palpable through your words. I am studying to be a family nurse practitioner and we have had minimal information about IBC given to us in school, but I will always keep it in the forefront of my mind when I see patients after reading your stories, and for that I thank you. Sending you peace, love, and thanks.
[…] part due to the massive dose of experimental drugs I was on, the neutropenia the meds induced, the highly elevated blood pressure, and the kidney infection that I battled without even knowing it for […]