Husband & Wife
Newsworthy: Everyday acts of kindness. (5)
A blog series highlighting the art of caregiving.
Photo narrative by: Wife
©Suzanne Fiore Photography
Early in 2019, my husband had odd symptoms. Numbness and lack of feeling around his mouth along with excess saliva. In February, he noticed weakness in his left hand and started dropping things. These symptoms showed up slowly and he/we passed them off as annoyances, not anything to worry about. On February 14th, his fellow employees insisted that he leave work and go get medical care. We talked about going to urgent care, but when I told a friend (with a nursing background) about his symptoms, she told me that he needed to go to the ER, not urgent care. So, on Valentine’s Day, we were at the ER instead of going out to dinner. ER personnel looked at him, took vitals and sent him for a CAT scan. They told us the CAT scan showed a “mass” on his brain and ordered an MRI. The MRI showed he had brain cancer, most likely Glioblastoma! The next step was the Most difficult – tell our children. Ironically, we were in the middle of a week of snow (very unusual in our area). Our children dropped everything and were there the next day.On Wednesday, Feb 20, my husband underwent hours of surgery to remove as much tumor as possible. Because it was located near the motor skills control center, it was possible there would be additional side effects including paralysis. The surgeon estimated 90-95% was removed and things looked very hopeful. After 4 weeks of recovery from the surgery, my husband underwent 6 weeks of chemotherapy and (brain) radiation, he was doing quite well. Family, friends and medical personnel were very happy with his progress. Unfortunately, blood tests showed low platelet (blood clotting agent in blood) levels. Levels were better by the end of May and he began the first of six treatments in June of double dose chemo med. Again, his platelets dropped very low and he took meds to bring levels back up. His red cell levels also dropped, his appetite decreased considerably, he lost energy and stamina and his attitude deteriorated. In late June, he had a seizure and he’s alive today due to the valiant effort by his daughter who performed CPR and son-in-law who stayed on the call with 911 for advice on what to do. It was the end of July before his blood counts were high enough for him to take round 2 of chemo treatment. Once again, platelets plus his red and white cell levels were too low. He received two platelet infusions plus a blood transfusion in August. Finally, his medical team decided to reduce the dosage of the chemo medication. It was September before blood levels were good enough to complete treatment 3. He did fine – all blood levels stayed up and we’ve all been happy with the progress he’s making.
In September, we traveled back to Seattle to UW Med Center for a follow-up with the neuro-oncologist who oversaw his treatment back in February. He agreed with the process his local team was using, was happy with my husband’s progress and said recent studies show 6 monthly sessions of the chemo med is optimal. At the time of writing this (October 2019), my husband is in his 4th session of chemo and with the lower dose we don’t expect any issues. His employer immediately offered short-term disability and our medical insurance continued, both of which have sustained us for months. Because he would be 65 in July, we started the paperwork to begin receiving pension distributions, Social Security and Medicare. It’s quite a process to complete all that, we’re thankful the paperwork is done, and distributions have started. He now also receives long-term disability. We are one of the fortunate couples that doesn’t have to worry about finances.So far, this has been a review of the physical aspects. Now I’ll try to write about the emotional effects on me, the primary caregiver, and his children, grandchildren and friends. We were all shocked and saddened with the diagnosis. At the hospitals in Seattle, his children and I were all under great stress and worry which led to high emotions and disagreements among us. For me, as Mom, this was one of the hardest parts: squabbling among my children. Thank goodness, we were able to talk things out and work together as a team. We set up a Facebook group page to keep family and friends out of the area posted with updates and information and had much support from all included. Another difficulty for me was that I was now primary driver – it would be months before my husband would be able to drive (as of writing this, he still can’t), especially after the seizure in June. He has struggled with the loss of control over his life and abilities and when his frustration came out as “bad attitude”, I really struggle to not feel hurt and angry. On top of the emotional feelings, it was up to me to keep up with the medical and financial records, doctor appointments, be sure his medications were on hand and ready for him as needed, complete paperwork needed for retirement benefits, social security and a long-term disability. Probably needless to say, I began to feel exhausted emotionally and mentally – my brain seemed “overloaded” and I had trouble keeping up with ‘stuff’ at times. To cope with this “stuff”, I vented to family and friends, went for walks, made phone calls to family and friends, often when not at home (so I didn’t upset Ross) and cried in private.
I created an Excel worksheet to track low blood levels – it grew much larger than we expected as several months went by with weekly Dr appts and labs (sometimes more than once a week). In July, we had a weekend gathering with our 4 children, their spouses and children, we went to a grandson’s birthday party, and we drove to a beach town to visit with a cousin of my husband who was vacationing there – things that he wouldn’t have been able to do in June and definitely good breaks from medical stuff. In August, the weekly appointments continued, and we stayed close to home. Family members visited in May, June, September and October and helped our morale considerably. In October, we’ve been able to make the 6-hour drive to the town my siblings and their families live in for visits and for community events. Visits with Family and Friends have definitely helped us through this. Things have improved since June physically, emotionally and mentally for both of us. The need for platelet and blood infusion was more frustrating than worrisome and, at this point, things look good. My husband has come to terms with having cancer, has a better attitude when blood levels are good and looks forward to only 2 more sessions of the chemo medication.Beginning in late July, he decided he didn’t always need someone with him, has had no signs of a seizure and I’ve been able to enjoy some retail therapy. I’ve also enjoyed being able to work – it’s been a good distraction from medical frustrations. Also, my employer is a Great Friend and has helped me tremendously throughout this ordeal. Our children continue to support us, my siblings have helped when needed and many friends have called or messaged often to see how we are doing.The sad part of our story is that the cancer my husband has does not go into remission nor can it be “killed”. It is terminal and the primary way to find out if the tumor is growing again is with MRIs, which are planned for every 3 months. From Day 2 we decided not to focus on what will happen eventually – hopefully later, not sooner.
For more information about Glioblastoma Multiforme, please click here.