Community & Family Embrace

I have to admit, these last couple weeks since my sweet husband let go, I have been grieving. Some readers of this blog have sent me email of condolences and suggestions on self-care.

Here is more of the story of what happened, and how I am being cared for in the worst time of personal grief…

Part 1: What happened

My husband developed jaundice in late June. A medical procedure to re-open the bile duct found something that was labeled “suspicious cancer.” This was in July.

More tests, imaging, and exams led to having a huge invasive surgical procedure in August to remove what was confirmed through pathology as Stage IIB pancreatic adenocarcinoma. This is pancreatic cancer.

That shocked both of us; my husband had always been healthy (after recovery from three years of hell with a curable but long-term infection 2012 – 2014) and was careful about getting regular health care.

Recovery from surgery was slow and difficult. I quit doing anything else in my life to concentrate 1000% on caregiving and support of my husband.

After literally hundreds of interventions in September and October, which included me giving my husband IVs, injections, and a slew of prescription meds, he began chemotherapy in November to go after what is labeled “microscopic cells” in the blood.

First chemo approach required 6-hour infusion of 4 chemo drugs in a hospital infusion center, and 46 hours of in-home infusion following that. He had a “mediport” installed into which these poisons were infused. I learned and was authorized to “access” his port so I could provide treatment at home as much as possible. That was important during the pandemic to lessen the number of times that I would have to bring my husband to an outside setting.

My husband could not tolerate the first chemo approach. It gave him horrendous nerve pain that lasted 3 days and nights without sleep. No treatment with nerve meds could reduce this pain.

The oncologist switched him to an alternate chemo approach in late November, requiring one hour of infusion of one drug (let’s call it “G”), and daily oral chemo for 21 days (let’s call that drug “C”).

Drug “G” caused my husband to spike fevers that were so high, I had to bring him to the emergency room twice — the weekend after U.S. Thanksgiving (last weekend of November), as well as and the second weekend of December.

He was admitted to the hospital through the ER each time and poked, prodded, and treated for two and three days, respectively. Both of these hospitalizations traumatized him immensely.

When he was home, he did not get better. Drug “C” caused severe mouth sores that persisted for five days in the first week of December when my husband could not eat or drink … anything. No treatment of the mouth sores relieved the severity of the pain.

As a licensed and certified medic, I gave him daily IVs of nutrition and saline for hydration. I also injected him with prescribed drugs that could only be administered that way — but by me doing it, we avoided having to go to the hospital or have in-home nurse visits. Anything to reduce exposure to Covid-19 was important to both of us.

On Christmas Eve, my husband was miserable with increasing volume and frequency of diarrhea. The diarrhea only got worse, despite a lot of treatment for it.

Because he refused to go back to the ER since he was traumatized badly by the previous two hospitalizations, my medic partner (with whom I trained in 1978) and I continued to give him daily in-home IVs of nutrition and saline.

But by Sunday, December 27, my husband was so bad, weakened, and miserable that he finally relented to have me take him back to the hospital, where he was admitted (for the last time) through the emergency room.

They found that he had developed a severe infection of Clostridium difficile, which is called a “nosocomial” infection. Meaning, it is often transmitted within hospital settings. So I think he got it when he was hospitalized in mid-December.

Both the chemotherapy drugs and the infection severely damaged his kidneys. So bad that by the 29th, he fainted from a severe drop in blood pressure (I found out later). On reviving him from that, he became delirious; unable to communicate except through vocalizations that no one could understand.

I was finally allowed to see him in the hospital on Wednesday and Thursday, December 30/31 by being granted an end-of-life visitor’s waiver of Covid-19 “no visitor” policy.

On assessment of his condition and in speaking with seven doctors, I soon came to realize that he could not recover and was going to die. The only words I got from him in the hospital when I asked if he should stay for a “hail Mary” dialysis attempt that could take five days were, “out! home! away!”

I took that as a clear sign to pull out the Advanced Directive and assert myself as his designated health care proxy. I took control. I had to. We talked about it a lot and I knew what his wishes were.

On New Year’s Eve, a medic buddy where I volunteer at my local fire department “borrowed” an out-of-service rig (ambulance in common terms) and drove to the hospital. Because this rig was from my home FD where I am allowed to ride in the back, I did that. We brought my husband to a hospice facility in our home county. I sat with him and held his hand for that long and bewildering transport.

He was admitted to a hospice facility where they had the right staffing level and meds to keep him comfortable. Visiting hours were 8am to 8pm.

I wanted to arrange to bring him to our house for in-home hospice, but considering the holiday (Jan 1) and weekend (Jan 2-3), I didn’t have time to arrange appropriate in-home care. By then, his condition continued to deteriorate. Even if I could have set up in-home care by Monday January 4, it was highly likely that transporting him to our house would result in death. So I kept him in the hospice facility for his safety, as well as my own comfort.

With experienced hospice staff, I could stop being “superman” and start being his husband again. I called that “return to husbandhood.” That was incredibly important to me so I could have his last hours to sing to him, hold his hand, and just… love… him.

As I said in my previous post, hospice allowed me to stay the night of January 4. I slept by his side, holding his hand all night. He finally “let go” at 6 in the morning on Tuesday, January 5.

Part 2: Self-care

I am grateful to have a strong and loving family. First. Always. There for me. My siblings, cousins, nieces, nephews, and “the greats” have all “been there” for me.

I am also grateful for a very close “circle” of family and friends in whom I confided during these last six months, and whose support was comforting to me.

I am grateful as well to have a best friend who is the EMS leader for our county’s FD. He was with me and helped so much during these last six months. I couldn’t have made it without him.

I am grateful to be a Life Member of my local FD. I briefly “returned to duty” in April and May and “re-upped” my licensure and credentials as a medic. Having more recent “active duty” contact with my FF/medic family has been immensely helpful. They have fed me, cared for me, and let me treat them by cooking meals as thank-yous. The “family” within a fire department is real.

I am grateful as well to have such good support from my hometown community, even though it is a large and sprawling suburb. To me, it is my home where I was born, raised, educated, married, served in office, and built our home.

My police, fire/EMS, community activists & leaders, elected officials, “senior pals,” everyone — all have been very helpful to me. They check in on me from time to time to make sure I am okay. My friends in the police department even helped me by stopping by to pick up unused prescription meds to dispose of properly and safely. I don’t want controlled substances in the home.

I am grateful and not afraid to admit that I have a terrific mental health professional who has been “seeing me” (virtually) since October, and continues today. Having this perspective of support is incredibly helpful as I recover from the biggest blow to my life.

I also participate in a support group for bereaved spouses of cancer patients. That is also helpful.

I am not pretending that all is well and I’m okay. I am not okay. I am grieving. There are times when I cry and cry hard. That’s all part of grieving. I meditate daily, which is part of the process and calming.

BTW: I am eating well and am keeping well-hydrated (with water.) I’ve always been “the cook” at home, so it isn’t hard for me to continue to cook for one. It’s lonely, but not difficult.

To deal with grief, I am now getting more “out there” to serve again. I am a “vaccinator” for my local county and am working three 3-hour shifts each week. It’s good to have something important and productive to do.

Finally, I am at peace. I know that my husband knows that I …

…showed him through my actions all these months through the end how very much I loved him. (because, as I often say on these blogs at the end, “life is short.” Too short.)

Go hug your spouse, significant other, family, friends, etc. — safely.

1 thought on “Community & Family Embrace

  1. BHD, I read this account with great sadness for you and BikerBeef, your husband. I hope no one will have to endure such at their end of life. From what you’ve written above, you have the solace of having loving family and friends around you to help you. Although I’m not there with you, I join with those others in offering you condolences at this sad time.

    May you find solace in the memories from happier times.

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