(A post from Stacey)

The first time I had pneumonia, just days after being discharged from a one month hospital stay after my tumor resection and reconstruction, Jaime and I rode in the back of a New York City taxi, holding hands as the city streets passed outside our window on our way to Memorial Sloan Kettering Cancer Center. At that point so soon after surgery I had no voice, not even a whisper. I typed to Jaime on my iPhone: I feel like I am underwater. My lungs are filling with fluid and I can’t get to the shore.

The pneumonia I had in November, December, February, and now in April feel similarly, only each additional round has felt like the water has gotten deeper and deeper, and the waves have grown erratic and increasingly unrelenting. The shoreline looks real, but I wonder if it’s a mirage. Regardless, the harder I swim the farther the distance grows between the turbulent sea and the stability of the shore.

This is now my fourth diagnosis of pneumonia since surgery. My lungs ache, walking is hard, walking up a flight of stairs is even harder. I coughed so hard I recently woke up vomiting in bed, my whole body shaking with the force of each cough.

My last hospitalization, seven nights in the ICU, was certainly not fun, but the stay was productive in a few different ways. Here’s how it began:

On Valentine’s Day morning, my eyes bolted open. I awoke in a state of pain so severe that I could barely move my hand just a few inches to my phone to call downstairs to Jaime for help. Each breathe felt like a sharp knife had punctured my left lung. Every movement or breath felt like the knife was twisting and stabbing.

I texted Jaime, “I think I need to go to the hospital.” When he came upstairs and realized that I could not move or barely breathe he called 911. My oxygen saturation was the lowest it had ever been and my fever of 105 degrees, the highest it’s ever been. 

Soon after being admitted the doctors were able to get my fever down from 105 and I was able to breathe and move without the unbearable pain I had woken up with. I never knew that pneumonia could be so bad that even moving an inch or taking the tiniest of breaths could be so excruciatingly painful.

After a few days in the ICU my improvement seemed to plateau. The pulmonologist recommended a bronchoscopy to look inside my lungs to see what was going on as well as get a sample to send to the pathology lab with the hopes of identifying the bacteria that was making me so ill. 

I was terrified of another procedure, especially one that wasn’t under complete sedation. The doctor assured me that I would have no memory of the procedure as a result of the medication he was giving me. His words were not a comfort to me. I was wracked with fear. 

Nearly one year ago I had to be awake during my tracheostomy surgery. There really aren’t words to describe the utter terror I experienced during that surgery in which my throat was cut open and a tube was inserted which would enable me to breathe without the ever increasing risk of the tumor completely blocking my airway. Long story short, since that surgery I am terrified to be awake during surgical procedures. I am haunted by memories of begging the surgeon to stop cutting into my throat because of the pain I was feeling. She didn’t stop despite my cries and offered no words of comfort. 

Despite my terror, I agreed to the bronchoscopy. Thank goodness the doctor was right. After the procedure I had no recollection of any of it. 

I am so aware of the many scars that this cancer has left me with. Some of my  scars can be seen: like the thick and still painful scar that goes from my knee to my hip where muscle and fascia were removed and transplanted into my throat to reconstruct the part of my throat that had to be removed with the tumor, or the uneven puckered scar from the incision across my neck, nearly from ear to ear, or the many areas of staples on my chest that secured an electrode going into my neck to monitor if blood was flowing to my reconstructed throat. Too many to list…

Other scars from this nightmare are unseen but deeply felt. 

The bronchoscopy showed that my lungs were severely inflamed. Prior to the procedure the pulmonologist in the ICU was hesitant to prescribe steroids due to my low immunity but upon seeing just how inflamed my lungs were he immediately ordered inhaled and oral steroids. He also took a sample which ultimately made it possible for the infectious disease team to isolate the specific bacteria that had so severely infected my left lung. The bacteria they found is not common and can be antibiotic resistant. It is referred to as a superbug and is often acquired in medical settings. Thankfully, I was prescribed an antibiotic that is known to target this specific bacteria. 

Here are some questions that our family and friends are asking:

Why do I keep getting pneumonia? 

Three hospitalizations for pneumonia in three months is certainly not the outcome of surgery that my team at MSK had hoped for. While my voice has improved, my ability to swallow has presented new challenges. It appears that when I am swallowing liquids and likely my own saliva the liquid is going into my lungs which is causing aspiration pneumonia. 

Can whatever is causing the aspiration be fixed? 

The answer to this question is not an easy one to hear. The only surgical fix would be the complete removal of my vocal cords. There are no other procedures that could prevent the aspiration. That being said, my oncologist, surgeon, and speech pathologist all still feel hopeful that as my throat heals the aspiration may still improve and ultimately stop happening. This current bout of pneumonia seems to indicate that the anatomy of my reconstructed throat is preventing me from getting and staying healthy. Even if I use my feeding tube for all food and liquids, that may not prevent the pneumonia. The doctors believe that I’m likely aspirating on my own saliva. 

We feel hounded by questions without answers: 

Will I be able to heal from this recent pneumonia? 

Will I recover and then get another aspiration pneumonia? 

Will I recover and be able to maintain my health and slowly get my life back?

Will I ever be able to live without a tracheostomy?

Will I have to choose between a life in which I have a strong voice but recurrent debilitating illness, or a life in which I would have no voice and a hole in my throat, but I could be healthy and possibly pneumonia free.

How do I possibly make this decision? 

We just don’t know what will happen and the uncertainty feels, at times, suffocating and unbearable. I am desperate to have my strength back, to be able to breathe without pain, to drink a glass of water without fear that this one drink could trigger another terrifying infection that potentially could be resistant to all known antibiotics. 

Despite the weight of our current situation, we continue to try our best to spend as much  time together as a family as we can. Bennett is loving pre-school and Porter can walk several steps on her own! Each time I return home from a hospital stay I am reminded to cherish each and every moment we have together.    

If you’d like to contribute to our Go Fund Me campaign, please click the link and share with other friends, family and community members as you are able. 

The funds that have been raised up until now have primarily gone to childcare, private nursing expenses, and transportation and lodging for visits and hospitalizations at Memorial Sloan Kettering Cancer Center. We are saddened to report that we now need your help more than ever. My employee sponsored health insurance policy will end at the end of April. Cobra is $4,000/month which is more than my monthly long term disability payment which is our only income to sustain our family of four. 

To change insurance policies at this time would be incredibly detrimental to my care, forcing me to change doctors, my oncologist, speech pathologists, palliative care providers, and medical supply companies. I rely on so many medical supplies to breathe and, at times, to eat. I rely on an oxygen machine oxygen at nights and suction equipment to try to keep my lungs clear. The three machines I rely on all require various tubes, filters, etc. The insurance plan provided by my employer has covered many of these expenses. Unfortunately, we will now have to cover either the new $4000 a month in premiums to maintain our policy or change policies and then be forced to pay for many of the added health expenses of all my equipment. We have already diminished much of our saving over the past year, these added health care expenses are a huge added burden.

We understand that not everyone can donate at this time. Your kindness and non-monetary support is equally as appreciated. Please reach out and check in with us as you all are able, people keep saying they don’t want to bother us, but that’s just means we don’t hear from many people, which feels rather isolating.

Even if you are unable to donate now or donate a second time, we humbly ask everyone who reads our story to pass along a link to our Go Fund Me on your social media accounts and family/friend networks, religious communities or other support networks. 

(As a reminder, if would like to donate to help our family during Stacey’s recovery please go to our GoFundMe page. Donating on CaringBridge supports the Caring Bridge platform and will not go to Stacey’s Care or support our family’s needs.)

We are forever grateful for your continued support and love.

Sincerely,

Stacey 

gofundme.com/supportstaceykd