In the last paragraph of Autumn’s previous update, I mentioned that one of the key lessons we’ve learned is that no two cancer patients with the same or similar diagnosis respond to treatments in the same way. That’s quite an understatement and we’re definitely experiencing a few obstacles in cancer care.

(Note: this update is longer to adequately explain everything so read to the end. Good news awaits. Read Part 4 here.)

To recap, on the third day of our marriage, Autumn had her first chemotherapy treatment in Miramar Beach. With her beautiful blonde hair and that trademark “Autumn smile,” the first of four powerful chemo drugs entered her bloodstream. Like most IV drips, the process was painless. Her chemotherapy sessions last about seven hours, so she settled into the chemo chair with her phone, some snacks, and a warm blanket.

Chemo Side Effects

How would the drugs affect her body? Would her hair fall out in clumps immediately? No, her hair loss wouldn’t begin until about 7 to 10 days later. To jumpstart the process, Autumn recorded and posted a video on her TikTok account (AUJ) of her sister shaving her head.

It wasn’t until around days four or five that she started to feel other effects of the chemotherapy, such as fatigue and lethargy. For the most part, Autumn was able to maintain her regular schedule, working at Shacks Art Gallery and completing art projects at home. Fortunately, her oyster shell artwork has been selling quickly, resulting in numerous orders from both her website and local shops.

Chemotherapy treatments are administered three weeks apart, with the second treatment scheduled for July 15. Just days after that session, Autumn began experiencing pain and swelling around the port installed in her left chest. Ports are placed to provide direct access to veins, as the veins in our arms cannot withstand the harsh chemotherapy drugs.

Non-Cancer Complications

On Saturday, four days after her second chemotherapy treatment, Autumn called her oncologist’s office, which led to the prescription of an oral antibiotic. However, the pain and irritation persisted into the following week. After a brief conversation with Dr. Moody, the surgeon in Panama City who installed the port, Autumn was instructed to go to the Ascension Sacred Heart ER in Panama City. Upon our arrival, the nurses and doctors evaluated her condition and scheduled surgery to remove the infected port. They also admitted her to the hospital overnight for further evaluation. At the time I thought an overnight stay made sense.

Lab results revealed a serious and rare bacterial infection. That’s when we began to question when and how the port infection started. While I understand that complications can and do arise in medical settings, I am convinced that she contracted the infection during her second treatment at Ascension Sacred Heart’s chemotherapy office.

And yes, that pisses me off! The issue is that until the infection in the port area clears up, doctors cannot install a new port or delivery system, which means that chemotherapy treatments have to be suspended.

Self-Care, Ugh

Autumn returned home with hopes that the stronger antibiotics would heal the wound, but it became clear a few days later that there was no improvement. During a follow-up visit with Dr. Moody, which her sister attended, Autumn experienced severe pain when the doctor started examining the wound without administering any pain medication, and digging through her port area. I’m relieved I wasn’t there to see that; I’m not sure how I would have reacted. Both Autumn and her sister were shocked by the doctor’s actions, and other healthcare professionals were equally appalled when they heard the story. Dr. Moody later apologized for her actions.

With the infection still unresolved, Autumn was referred to Dr. Price, an Infectious Disease specialist in Miramar Beach. This led to another series of procedures. We are both very appreciative of Dr. Price and her staff.

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Autumn is scheduled to receive three daily IV treatments as part of her new protocol. The first dose is administered at Dr. Price’s clinic every morning at 8 a.m. The second and third IV doses are self-administered at 4 p.m. and midnight, respectively. A picc line was also installed to administer the IV.

To summarize: For two weeks (14 consecutive days, including weekends), Autumn visits the IV clinic for the 8 a.m. treatment and self-administers the other two IVs at home. While the afternoon IV is manageable, setting an alarm for 11:30 p.m. every night to prepare for the midnight dose is quite a hassle.

Although it is inconvenient, we are grateful for the treatment and are hopeful for healing so that chemotherapy can resume. However, other issues have arisen.

Wound Care

Doctors instructed Autumn to clean her wound daily. Although it was gross and painful, everyone thought it was necessary. However, Dr. Price, the infection specialist, became upset when she learned that Dr. Moody’s office had advised Autumn to use a cotton swab as part of the cleaning protocol.

“Are you sticking a standard Q-tip (cotton swab) into your body?” Dr. Price asked, alarmed.

“Yes, ma’am,” replied Autumn.

“You mean the type you use to clean your ears?” the doctor pressed further.

“Yes, ma’am,” Autumn confirmed once more.

“Please don’t do that again. From this point forward, my nurses will clean and dress your wound every morning. And, I’ll advise Dr. Moody’s office that your wound care is my responsibility, and mine only.”

I immediately sensed some progress was being made.

To prevent any potential infections or complications, the doctor advised Autumn to limit her interactions with others. This means she won’t be working her shifts at the gallery or socializing. She felt terrible about missing her friend and mentor, Dwight Ward’s 79th birthday celebration. Fortunately, everyone, including Dwight, understood her situation.

Until the lab processes additional blood work, we are uncertain about where things currently stand. However, there is hope on the horizon.

Contacting Mayo Clinic In Jacksonville

Last Sunday evening, I attended our usual gathering at AJ’s in Grayton Beach to listen to the Pickled Pickers and update everyone on Autumn’s condition. We are fortunate to have a wonderful group of friends who provide us with love and support. I mentioned to our dear friend Johnny Crawford that I thought it was time to seek a second opinion, and he agreed.

The next day, on August 11, I found the Mayo Clinic Jacksonville website and completed their patient admission form. We had no idea if they would accept Autumn, but we had nothing to lose.

Two days later, I returned from an afternoon workout to find Autumn in bed administering her 4 p.m. IV. “Hey, honey, guess who I just got off the phone with?” she asked, smiling. “Mayo Clinic in Jacksonville just called, and we have an appointment next Wednesday afternoon.”

We’re definitely making progress! Many cancer patients we know or have spoken with have recommended seeking treatment at a specialty clinic, such as Mayo, MD Anderson, or Vanderbilt, among others.

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Thankfully, Autumn is covered by my health insurance, which has been great. An oncology nurse from Cigna reached out to Autumn a few weeks ago and has been an excellent source of information. As I told her last week, “We want to get off your payroll (paying for cancer treatment) as much as you want us off.”

Travel and medical expenses can add up quickly, and since both of us are freelancing, we’re uncertain about how we’ll make ends meet. One thing is for sure: God is good, we are blessed, and everything will work out in the end.

I’ll update everyone after our visit to the Mayo Clinic next week. Thoughts and prayers are greatly appreciated.

There are two ways to contribute to Autumn’s medical expenses:

Venmo: @AutumnMJohnson

Tax Deductible Contributions can be made through PayPal at DwightFest. Please specify “Autumn Johnson” in the notes section.