On Grief and Gratitude
She was brave. And strong. And broken. All at once.”
Community Memorial Hospital.
Morphine.
Blood Transfusions.
TPN Bags.
Dr. Alqwasmi, Dr. Taft and Dr. Ullah.
Mycamine, Aztreonam, Levaquin, Daptomycin and Meropenem.
These are the things I am most grateful for this year.
I won’t say that I am thankful. Because I’m not.
Because being thankful is a feeling. And I am consumed by a million feelings, but that is not one of them.
But I am grateful. I am grateful because there are things that I am appreciative of. I’m grateful that mom is still here and that she is still fighting. I’m grateful that she has an amazing team of doctors and is at a hospital filled with nurses who are taking such great care of her. I’m grateful for modern medicine, and for what it is doing to help her body. I’m grateful for an amazing dad who loves her so much. I’m grateful for my family, Charlie and Hailee and all of my aunts and uncles, who have been there for mom through all of this. And I am grateful for my friends and for mom’s friends and the unbelievable support system that we have – a support system full of people who are there for us, no matter what. I’m grateful for a kind and supportive boyfriend, who wipes my tears and reminds me that everything is going to be OK, even when I feel like it’s not. And for my dog – who loves me without condition and reminds me to find joy in the simple things when life gets too hard.
But this Thanksgiving… this year…no, I am NOT thankful. I am angry. I am pissed off. I am sad. And I am consumed by grief.
Grief is ragged, it’s desolate and it’s bleak. It comes in waves…set off by the tiniest little moments... moments that compound until they ignite in the place where your torn-up heart used to be. You fight off tears, you fight panic, and you fight to catch your breath and stay standing. Grief took hold of me today, fully and completely. So, I did the only thing I knew how to do. I cried. I sat on the floor and I sobbed until I couldn’t cry anymore. And then I pulled myself up and I started writing.
Here’s the thing. I.AM.SCARED. Terrified, actually. I’m so tired and I want so badly for this nightmare to end. Grieving is exhausting. But I read once that grief means you’ve been brave with your heart. So, I am trying like hell to be brave. For mom, for dad, and for everyone else. But it’s hard to be brave when these past few days have been so incredibly hard.
A lot has happened since the last time we all talked. So, here it goes.
Day 1: Tuesday
Mom went into the cancer clinic around 2 p.m. on Tuesday after cancelling her IV fluids on Monday since she was too exhausted to get out of bed. Turns out, that was exactly why she should have gone in for her treatment. She hadn’t been able to keep anything down since Sunday (including all of her cancer + seizure medication), which left her battling a bout of severe dehydration and extreme pain in her throat and chest.
On top of that, her weight finally plummeted into double digits, which forced Dr. Alqwasmi to admit her to Community Memorial Hospital to receive a feeding tube. No ifs, ands or buts about it. The hope was for her to receive the “peg” tube and be home by Friday mid-morning.
Unfortunately, ifs ands and buts don’t account for neutropenic fevers.
On Tuesday night, mom’s fever spiked to 102. And, as I have learned, surgical procedures (including feeding tubes) are a big no-no until patients are fever free for at least 24 hours. They started her on a TPN bag, which is essentially a complete source of nutrients that is delivered through the port in her chest.
Day 2: Wednesday
I paced nervously all day and tried to stay busy at work as I waited for an update. Patience is not my strong suit, and it felt like forever before I got any answers. But per usual… answers only led to more questions. Charlie stopped by to visit mom and gave me a full report later that afternoon.
On Wednesday morning, her fever dropped down to 99.8, but then later than afternoon it spiked back up to 102. They started her on an initial round of intensive antibiotics to help fight the fever and a blood culture was taken to help identify the source of the infection. We were told that if the antibiotics didn’t help, they would move to start fighting a fungal infection. We were still hopeful that her fever would break and she would receive her feeding tube on Friday and be discharged on Saturday.
Unfortunately, many of her counts were extremely low. Her platelets were at a 28 (they need to be at least a 50 before surgery is even an option) and her white blood cell count was well below normal range. Because her hemoglobin was low (6.4) they gave her two blood transfusions on Wednesday afternoon in hopes that they would be able to get it up to their goal of 8.4. They also gave her magnesium as her numbers were ok, but they didn’t want them dropping any lower.
Mom’s nurse, Chris, called me Wednesday night to walk me through everything that had happened since she had been admitted and helped ease my mind a little bit. They said a lot of her symptoms are common in cancer patients as they reach the end of high dose chemo/radiation stages. Especially with Esophageal Cancer patients, as they are unable to eat and take in the nutrients they need to help fight off infection.
Day 3: Thursday
Thanksgiving. Seger and I Facetimed mom Thursday morning and she looked good, considering. We chatted about how my turkey was coming along and what recipe I used for my homemade stuffing. She mentioned that her fever spiked to 102.9 the night before, but that she was feeling pretty good since they had given her a bit more morphine and some Tylenol. The source of her infection was still unknown, so they were attempting to treat it with two high dose antibiotics and an anti-fungal medication.
Since Wednesday afternoon, her platelet count had dropped from 28 to 24 and her white blood cell count dropped down to 1. For a point of reference, a normal range for WBC is anywhere between 7-12. Thankfully, because of her two blood transfusions the day prior, her hemoglobin increased from 6.4 to 9.4.
I was able to Facetime her and Dad again later that afternoon. It was the first Thanksgiving I have been away from them… ever… and it was heartbreaking. Dad passed on celebrating with Charlie and Hailee at their family dinner to spend time with mom. He’s just the best. In lieu of turkey and stuffing, mom celebrated Thanksgiving dinner with her second TPN bag of the day… 1,600 calories of fat emulsion, dextrose (sugar), protein, multivitamins and a bunch of other words I can’t pronounce.
Because of her continued fever, her surgery to receive her PEG tube still was not scheduled, but we were hopeful that it would maybe happen on Saturday.
Day 4: Friday
I sped (literally) back to Wisconsin and made my way to the hospital to visit mom. But first, a pitstop at Target to fulfill her request for some warm and cozy “civilian” clothes. When I got there, I gave her the biggest hug her teeny, tiny body could handle and then we chatted about everything and nothing. She seemed to be in great spirits and was feeling “good” so we ordered some “room service.” I was impressed to see her take down an entire bowl of cream of wheat and a bowl of green jello.
Unfortunately, her platelet counts dropped again from 24 to 22 and her fever spiked again that morning which meant we were, at minimum, another 24 hours away from a feeding tube. Her WBC count remained at 1 but her hemoglobin levels were still holding steady.
Aunt Mary stopped by for a visit which was a great surprise. She is one of mom’s very best friends and we laughed and laughed and told stupid stories.
And then! We finally got to meet the famous Dr. Alqwasmi! He has been treating mom for so long and though it was my first time meeting him, I wanted to give him the biggest hug. Thankfully, for my dignity, I was able to remain seated while he gave mom an update. The feeding tube was now off the table. She was able to get some semi-solids down which was a huge improvement since Tuesday, and all of her counts were still way too low to go under the knife. He did mention that there was a possibility that maybe she would go home with a portable version of her TPN bag if eating continued to be a struggle. But, for the time being, she would remain in the hospital until she was fever free.
After he left, mom and Aunt Mary and I made a trip down to the gift shop… mom’s first venture out of her room since she was admitted. After Mary left (shortly after dad arrived) mom took a nap while dad kicked my butt in scrabble. Around 6:00 p.m., Mom’s fever spiked to 103 and she was experiencing a lot of chest pain and coughing… which lead to puking. The nurse came in and gave her some Tylenol and morphine and we left her to get some sleep.
Day 5: Saturday
Another day, another fever. And the worst news… that she should get comfortable. Her platelets were down again, from 22 to 17 and her WBC count was a 1.1. When Dr. Alqwasmi paid mom a visit before we arrived, he told her she wasn’t going to be discharged “anytime soon.” We don’t know exactly what that means… but we were hopeful she will still go home early(ish) next week. He also mentioned a possible full body (pan) CT scan, but we don’t have word yet on when or if this will happen.
Dad and I spent the morning hanging Christmas lights outside for her return (her one request) and then we headed to the hospital with Charlie and Hailee to watch the Badger game (woof).
After a visit from Aunt Cindy, Elise and Jeff, mom was pretty drained. She took a short nap while we watched the Badgers get slaughtered, and then woke up to another fever and a bought of intense coughing. Because of her high fever, her infectious disease specialist switched her to yet another type of antibiotic. Fingers crossed.
Later that evening, we finally got to meet Dr. Taft. You guys. This guy is a S-M-A-R-T-Y P-A-N-T-S.
He was the one who successfully diagnosed my uncle Mike with Lime’s Disease after multiple doctors turned him away. He was also the guy who helped determine that a cryptosporidium outbreak was the cause of over 400,000 illnesses and 69 deaths in Milwaukee in 1993. Basically, a guy you want on your side.
After telling a few jokes and chatting with mom about her symptoms, he finally gave us the first “answer-ishy” diagnosis since she had been admitted five days ago.
Aspiration Pneumonia.
In medical terms for dummies…fluid is getting into her lungs.
Every time she eats or coughs or ehemm… throws up (sorry mom) some of it comes out and some of it goes into her lungs. Pneumonia is scary for most people, but it’s even scarier for cancer patients with a comprised immune system and literally no infection-fighting good stuff to clean it out. Luckily, thanks to her amazing team of doctors, we now know what is causing the fevers/infection and are fighting like hell to treat it.
They changed her drugs, yet again, and we are HOPEFUL that this time we are going to beat this shit and she will come home soon.
Day 6: Sunday
Mom woke up at 8:30 a.m. with another 102 fever. After receiving some medication, it dropped back into normal range and, when I spoke with her on the phone at 1:30, it was still good. She met with both of her doctors earlier in the day and according to mom, they both seemed optimistic that they have correctly identified what is causing the fevers and that she will hopefully be feeling better soon. But still, she won’t be going home for a while.
Her WBC count continues to decline which has us all worried, and while her platelets finally started to increase and were up to 23 today, they are still dangerously low and nowhere near what she needs them to be at before we can even consider the esophagectomy surgery she will likley need to keep fighting this cancer.
She has her full body CT scan scheduled for tomorrow so we hope to know more then. Fingers… (and toes, and legs and everything else) crossed.
And that’s where we are at.
For all of you who continue to ask what you can do… please, please, please continue to pray. I don’t care who or what you pray too… but please do it.
xo,
Maggie
