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.
Click below for your Free tips for a successful photo session:
Friendship, love, trust, support, encouragement, honesty, commitment, strength, perseverance, joy, laughter, respect, acceptance, vulnerability, spirituality, understanding, dreams, music, art, & the performing arts are all alive and well between us. I’ve learned these things, received these things and achieved these things thanks to these friends who have been a part of my life’s foundation & growth for over 20 years! Reunited & reminded again that I can still do and be anything I want while being proud of who I already am! Most importantly – I can STILL always be fully me and nothing more or less when I’m with them…
Wishing you all this kind of joy, love, and friendship in 2018!
©Suzanne Fiore Photography
Every once in a while, I like to give you a glimpse into my life. This glimpse introduces you to people who have been in my life for its entirety.
These are my first friends! They are my friends still. We met at Olivet Presbyterian Church and it’s safe to say that, with the guidance of our incredible Pastor, Lee, and the support of his gracious wife, Louise, I learned what great friendship looks like and how to nurture those relationships. We have been through the best and worst together. We have traveled together, built houses together, learned together, fought together, healed together, celebrated each other’s achievements, and have helped each other navigate through difficult moments in our lives. I have taken that example with me into the friendships that came into my life as I grew and I have certainly been blessed with extraordinary friendships. Friendships that I am very proud of. This group is at the foundation of it all. I love them dearly and I’m eternally grateful that they are still in my life.
These friends and I recently took a trip to visit with our pastor and his wife in Delaware. While we were all sitting around the table together we realized, in between bouts of laughter, that it had been 25 years since we graduated from our confirmation class. Here are a few moments from that reunion…still laughing..25 years later.Olivet Presbyterian Church – Confirmation Class of 1992
Pastor Lee & Louise
©Suzanne Fiore Photography
Billy & Meredith
Newsworthy: Everyday acts of kindness. (4)
A new blog series highlighting the art of caregiving.
Photo narrative by: Meredith Wright
©Suzanne Fiore Photography
My brother, Billy, has a beautiful smile. He also happens to have Down syndrome, epilepsy, hypothyroidism, and mild autism spectrum symptoms. It’s refreshing to have an outlet where I can share all the best things about Billy, as so often on forms and in meetings, caregivers are forced to focus on all the things that their loved one can’t do.Billy loves listening to music in the car with the windows down. He also loves to swim with our Dad, and he’ll give you his cheek if you ask for a kiss. When Billy hugs you, it often feels like he’s going to knock you over from how tightly he pulls you close.Billy loves eating at our Grandma’s house. He likes eating anywhere, really.
Since my Mom’s passing in 2015, my Dad and I have been Billy’s co-guardians. Stepping into this role has changed my relationship with Billy significantly. I have always loved him and have been inspired to work in science/healthcare because of his influence on my life. But now that love is fiercer, as an adult sibling relationship involves not only love but also advocacy and caregiving.A few months after my Mom passed away, my Dad and I made the difficult decision to move Billy into a group home. We were fortunate to find a group home near our hometown run by the Arc of Essex County, which also ran his preschool and current day program. I often wish I could clone myself, and have one Meredith go to graduate school while the other Meredith cares for Billy. But since this isn’t possible, I’ve learned to work with the group home managers and staff to make sure Billy’s needs are met. Between Billy’s day program, group home, family, and friends, we work as a team to try to create the best possible “Plan B” in my Mom’s absence.
Billy has always liked sticking to a routine, and so the new routine we have is that roughly every two weeks my fiancé and I travel from NYC to NJ and pick up Billy from his group home. We drive to our Grandma’s house, playing music for Billy on the way.When we get there, Grandma always has something delicious waiting for us to eat.
We then have time to hang out, or take care of random little things like cutting Billy’s nails, trying on new clothes for him, or running some errands together. Then we usually meet our Dad later on for dinner, before heading back to Billy’s group home in time for his evening dose of seizure medications. When we’re together, I try to give Billy as many hugs and kisses as possible, so that he’ll know how loved he is even when I’m not there in person. Since Billy’s verbal skills are not at a level where he can have a conversation, it’s hard to know how much he understands. But when we’re together, he always leans in for huge hugs and kisses. He communicates his love for us this way, and I truly believe he understands how much we love him too.
If you are a sibling of an individual with special needs, please find information, resources, and support here.
If you are a sibling of someone with special needs in NYC, visit sibsNY for resources and support.
I’ve been putting this camera to work! I brought it to this family’s photo session and captured some of their images with the Rolleiflex. I am excited to share some of the film scans with you. I had a BLAST with this family of 3 at South Street Seaport. It’s always a pleasure to work with new clients and to learn about their family. This trio and I had 2 hours of fun! Stay tuned for more from my time with them.
©Suzanne Fiore Photography
Hello and thank you for taking the time to read about, and look at, the photo products I’m offering.
I have new and improved packages available for you that include prints and/or photo albums (and mini albums). I love these products and am excited to share them with you.
First – let’s talk about prints. I offer matted prints, for your framing preferences, as well as non matted prints. Below, I listed the most popular options. Additional size options are available upon request.
- 5×7 Fine Art Print (Matted for 8×10 frame)
- 8×12 Fine Art Print (Matted for 11×14 frame)
- 11×14 Fine Art Print (Matted for 16×20 frame)
NON MATTED PRINTS:
- Prints from Rolleiflex will print in a square format
Here are some visuals of matted prints in the most popular colors: black, gray, and off white. Other color options are blue, green, and brown in various shades.
*Framing not availableNow let’s talk about albums. I encourage my clients to consider an album as a gift, of course, but also as a perfect way to move your photos from your flash drive to a more tangible way to store your photo memories. Prices vary based on # of pages and size of the album. Please contact me for pricing lists.
- 6×9 or 9×6
- 8×10 or 10×8
- 8×12 or 12×8
- 8×8 or 10×10
- 11×14 or 14×11
Here’s a visual of what my albums (and mini albums) look like:The mini albums fit in your pocket, they feature up to 12 photos (including the front and back cover) and come as a pack of 3! You can choose the cover material and color for your album. There are various options to choose from: Finally – I want to share, with you, some of the pages from a gift that was given to this family’s matriarch. I was hired to photograph her 90th birthday party and then the family created a photo album, with memories from the day, as an additional gift.
This birthday album is a 6×9 sized album with a contemporary linen cover – in lilac (the birthday girl’s favorite color).
Each layout is 2 pages… I have samples of albums and prints available to show you when we meet for our initial consultation.
If you’re a returning client and want to put photos of your family, from our session together, into an album – let me know and we can begin collaborating on that. If you’re ready to put prints on your wall – I will offer you a free consultation to help you with a layout for your home gallery.
In addition to including prints and albums within my new packages – there is an option for the products to be sold separately if you have already had a photo session with me. We can also customize a package for you if the packages I created don’t suit your needs.
(Please contact me for package details & pricing information.)
Let me know if you have any questions.
As always – thank you for the support!
©Suzanne Fiore Photography
The Broadway Boys are getting ready to get back into the studio to record their next album, “A New Broadway.” I had the great fortune to photograph them on a day when they were recording their new arrangement of Magic to Do. On the same day, they were also creating the video for their Kickstarter campaign. These “Boys” work HARD! I’m giving you a behind-the-scenes look at this group recording their single & creating their video. I’m also sharing some photos taken with me during the photo session portion of the day. Did I mention how hard they work?! See for yourself…
They’re fun to look at but you’ll want to hear them too! Today (7/21) is the LAST DAY to get a FREE download of Magic to Do with any pledge! #joinus
Kickstarter Campaign Videography: Nate Wind
©Suzanne Fiore Photography