Safety Nets

Jenny here. I was just thinking today that starting the blogs out this way kind of goes without saying. But it's my heart holding out for the day you will read words from Wil saying he's back.

The last few days have been similar. Although "normal" is not anything I can define right now, (each segment has it's own similarities between days, but changes quickly to the next phase) we are working on a schedule.

A day in the life of Jenny and Wil is as follows:

Wil:  Eat, walk the house slowly using walker, sleep, work on trying self care tasks, sleep, TV, eat, sleep, call for help, sleep, etc.

Jenny:  Changing Depends, helping cleanup Wil, laundry, cooking, TV, holding Wil until he falls asleep, laundry, cooking, setting appointments to coordinate care and services, meds, vitals, essential oils, and up off/on throughout night. (Last nights pressing question was "how do you split a cabbage?" He still gets disoriented when he's sleepy).  6 days a week are followed by work.

These are not glamorous days, they are hard and heart stretching. Lovely and unexpected. It's an interesting mix, somewhat slower days since I am not driving to see him, but busy all the same. I've never done so much laundry!  And I've never kissed his head or held him more. I'd trade the laundry in...but I'll take the rest. He has my heart.

Wil's anxiety has been really high. He loves routine. And it just keeps changing. The new normal Is that there is very little that stays the same. Today I found him in his bed sweating, hyperventilating, and shaking. His pulse is always so high when he is in this state. All I could do is lay next him and squeeze him until the shaking stopped. He's more aware but with that comes thoughts about treatment, death, and me. His heart is so big. His poor head is so heavy with worry.

Tomorrow is his PT evaluation for outpatient sessions. We opted for outpatient vs in home because Wil really wants to get out of the house and the place he has gone to before is 3 minutes up the road. It will be an adventure all the same!  I'm hoping he fresh air and new therapists will ease his mind.

Over the weekend we had a surprise one day visit from my paternal grandma. My uncle and aunt flew her with my cousin straight from Minnesota to Texas. Her first flight in 20 years. They say you need 4 hugs a day for survival and 12 to thrive. I think I'm finally caught up from the last month. I didn't want to let her go. It was exactly what we needed. An epic day. I'm lost for words these days. How can one describe the feeling of seeing their 86 year old grandma massage the feet of their husband, rub his temples, and give hugs that don't let go?  It's like those silly commercials: Priceless.

The other word is rocked. It's the word that describes my life. Rocked at first with an unexpected, heavy, long term diagnosis. But now rocked because of all the people that continue to put their words, arms, and love around us.  I often feel like an infant being rocked by the kindness that has flowed. From flowers, to cards, to gifts, to donated PTO. I hope I'm saying it as often as I feel it. We are so touched by the outpouring. Wil said "I didn't know that many people liked me."  Silly Willy. Everyone who meets him loves him instantly.

Family and friends have truly become our safety net in every aspect. We are not comfortable asking for help. Thankfully we seem to have many stubborn, loving people in our camp who give of themselves when we have been too shy to ask. So many others have asked how they can help and I'm left not knowing how to say what I need. I apologize. I do need you. It feels vulnerable to make requests.

Although it's hard to admit or ask, in a effort to speak the truth about the cancer journey, I will be real with all of you tonight. The real issue for most people with a health issue, and especially cancer, is the financial strain it causes. In the midst of the fight for your life or your loved ones life, the medical bills keep coming in. The regular bills keep coming in. As you work less to take care of your loved one, the money dwindles but bills...keep coming in. You try to make it on your own. You cut out non essentials, argue with lenders to be lenient. You do your best in between the appointments and laundry and tears to come up with a plan. You try to shelter your loved one from the knowledge of the finances all together.

I remember reading an article back in May from NBC, right before Wil's 2nd biopsy, that stated cancer patients are 2.5 times more likely to file bankruptcy.  I thought to myself, well thank goodness I have work and benefits. We are blessed with pretty decent benefits and coverage. But even so, we have been partially surviving the last 2 months on the kindness of family and friends. It might be different for different folks. Certainly being a contract worker has made it more "interesting" for me as the bread winner and caregiver. What gets scary is that we are in the early part of this and, although the first of the three years will be toughest we are told, it still leaves us on a tight rope until his disability is approved.

A friend of mine came to me last week with a project she wanted permission to proceed on. Again we are blessed with hard headed people who take the lead to help us when we hadn't even asked!  This project is an invitation. If you want to participate, know it means a lot to us.  We never want people to feel any pressure and are so appreciative of prayers and thoughts alone. But if you have been touched by our journey and are looking for a way to help us this spring while also showing support, check out her etsy link below. She is donating all proceeds to us and you get a specially made bracelet that has been Wil approved. Our goal is to sell 250, the amount left that  we need to pay our rent until his disability goes through.

We are already wearing ours!  If you do get one, we'd love to create a wall of pictures with you wearing yours...so shoot me a pic that I can print out so Wil can see the "Safety Net" of people in his tribe, near and far.

http://www.etsy.com/listing/176256062/safety-net-bracelet-fundraiser?ref=shop_home_active_1