Update on Hank

NOTE: I made a new blog for Hank and one that you can subscribe to so you can receive notices when I publish another update. All updates will be on this blog from now on. Spread the word, please! Thank you.  http://updateonhank.wordpress.com

November 28, 2016

To Hank’s friends, clients, colleagues,

We so appreciate everyone wanting to see and speak to Hank but we have to ask you to be patient. Please remember Hank is incapable of using his phone at all. Due to his strokes, he cannot read your texts nor respond nor dial but we do check his phone daily.

We only ask that you please not expect an immediate call or text back as I am swamped with caregiving duties, critical phone calls/visits with Dr’s, nurses, hospitals, pharmacies, Hospice staff, and such.

Hank will let me know whom to call or text back and I will do so as time allows.

Also, please realize our little family hasn’t had much time to adjust to all of this; we’ve been trying to get into our own routine since the cancer diagnosis and Hank’s discharge from the hospital on the 14th but with so many interruptions, it’s been difficult to do so.

I can’t remember the last time we had more than 3 hours of sleep as Hank needs constant monitoring & pain management. We’re exhausted.

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So, as of this date, Hank and I have agreed that we can no longer see visitors on a daily basis. It’s just too much. We’ve had more than 20 people visiting within one week!

Because of the many strokes Hank has had, simply recalling the past two months is difficult for him as many parts of his brain have died and scarred over and in trying to hold a conversation and struggling to not only remember course of events, but finding and using the right words is very difficult for him and leaves him exhausted and frustrated within minutes.

Almost everything he does that you and I take for granted is exhausting for him because he’s creating new neural pathways: his memory, word retrieval/conversation, using utensils, brushing his teeth, washing his hands, even walking is difficult due to his impaired vision that throws off his balance. He gets dizzy easily and fatigued easily.

For stroke patients, fatigue is one of the foremost symptoms and he needs to nap often. Add to that his body fighting the cancer (and being overwhelmed with it), and the pain that causes him, plus the pain killers he is on, plus his impaired vision which affects everything, plus only getting a few hours of sleep at a time…well, he is easily tired.

We still haven’t been able to find or go to a specialist for stroke rehab and at this time, I don’t foresee that happening. I’m in the process of trying to find someone who can come here once a week, or even just once to tell us exactly what Hank’s evaluations say about the stroke damage that’s been done, since the hospital hasn’t done that for us. We see what he can and cannot do, but it would be nice to have a specialist explain things and give us tips, tools and exercises to help his memory/vision repair itself. I’ve done a lot of research and am doing my best but I’m sure there are simple things that I don’t know about that might help his progress.

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We’ll probably set up a couple of days a week for visiting and/or for returning phone calls but we ask that you respect our privacy right now. The three of us need time with each other, to adapt, and to set up our daily routine more concretely (always with some flexibility, however).

I’m still inundated with critical phone calls as I mentioned at the beginning, so every time the phone rings, I jump. And, I know I gave some of you our home phone to use instead of Hank’s work (cell) phone, and I’d like to change that, please.

One of the best ways to help us/me now, is to go back to calling his cell phone number instead of our home phone number. You can leave a message or text but just know you may not hear back from us for a few days.

I’d like our home phone number to be my direct connection to critical care calls: hospitals, pharmacies, doctors, nurses, Hospice, banks, financial aid, etc. If you could help me with this issue, that would be terrific.

Please know once we feel up to it, we’ll start returning calls and texts. We love hearing from you and so appreciate your generosity but we need some time for ourselves right now, and neither Hank nor I can keep up with the visits and personal calls. We hope you understand. Thank you.

Love and light,

Lisa, Hank and Christopher

November 24, 2016

Hank and I wanted to wish everyone a Happy Thanksgiving. Please cherish this day with your friends and family no matter how much they get on your nerves. 😉 You never know what life has in store, so tell your loved ones what you appreciate about them and how much you love them.

Hank has been in the process of testing out medications for pain management which work best for him so he can keep as alert as possible and do as much as possible.

His family has been here for several days, helping out in any way they can. They are a handful and I love them for that! Yet, they manage to skillfully respect our privacy and Hank’s fatigue and are always at the ready to do what is needed. We love them all.

My son is so touched by the generosity of family, friends, and neighbors with their time, their love, their offerings of help, as well as by the financial generosity of people who love Hank and want to help us in that way. Hank and I are too. From the depths of our hearts, thank you.

Enjoy the day! ~Lisa, Hank and Christopher

November 18, 2016

Dear Hank’s friends, family, clients, and colleagues,

Let me first thank you for all of your phone calls, texts, visits, and now, financial generosity. Hank and I are so touched that Ashley McFall has created the gofundme page for our family.

Hank has been so worried about our son and I, and not being able to provide for us. Unfortunately, I haven’t been able to earn an income in several years. So when I saw the fundraising page, I saw Hank still providing for us…by being who he is: a generous, kind-hearted, hardworking, talented, intelligent, loving man, husband, father, son, brother, and friend.

For me, it has been a bit overwhelming to hear from many of you: those I’ve met only once or twice, and those I’ve never met but feel I know because Hank would always talk about his projects/work with me at home over the years.

The last two months (and especially the last month), I’ve spent hours making between 10-20 calls a day trying to get help, answers, appointments from doctors, clinics, hospitals, financial aid people, so I’m afraid I’m a bit talked out and why I’ve written this page. So I can update everyone at the same time. I hope you understand.

Yesterday, November 17, 2016, Hank and I went to the oncologist for the results of a PET scan on the 15th, after two months of Hank being in and out of hospitals. As some of you may know, Hank has suffered many small strokes (series of strokes) during this time leaving the doctors puzzled as to where the blood clots were coming from, and how they were getting to his brain.

A couple of weeks ago, they finally found a clot on his lung then a medium spot on a lung (two different things) but they still weren’t sure if this was the source. Not even sure now, to be honest. It looks like the blood clots were coming from there, traveling through a hole in his heart (10-30% of people in the U.S. have holes in their heart and they’re fine) and into his brain.

Due to the strokes, his vision is impaired so his motor skills are off a bit but those have improved after the last visit (was released on Nov. 14th) to the hospital and a new medication. His speech is slightly off but he has difficulty finding certain words, slight memory problems, has difficulty writing letters and numbers. All repairable.

However, the PET scan has shown that he has not only lung cancer (adenocarcinoma) but the disease is in his abdomen as well. Stage 4, with a weird cancer mutation in 1 gene and it is untreatable. The doctor said we could try chemotherapy for one session to see if it did anything but left that up to Hank.

The primary source is unknown, meaning they don’t know which came first, the lung cancer* or the abdomen cancer* but they’re leaning towards the lung, so they’ve called it that. It is a very aggressive cancer.

*Clarification Note: It’s all the same cancer, they just don’t know where it started. Even though they are calling it lung cancer, it isn’t due to smoking. Hank doesn’t smoke and the cancer is ON his lungs, not in them. 

There were numerous doctors/specialists called in to consult. With all the times I was at the hospital, though, I never met one of them and only spoke to maybe three of them (out of 10-15?) Neurologists and oncologists alike.

Hank has been in pain from the cancer in his abdomen. He doesn’t want chemotherapy. He doesn’t want false hope. He doesn’t want me and our son burdened with any further financial debt. We have been in the process of applying for financial help through Shands (so many hoops to jump through!) and as yet, don’t know if we’ll qualify or not. If it goes through, the cost will be relatively minimal. If not, I don’t even want to venture a guess.

My focus has been on getting Hank cared for, examined properly and in a timely manner the best I can and our son, Christopher (24) has been phenomenal. Driving his father to and from doctors’ appointments, staying with him at a lot of them, (even staying at the ER one very long night about a week ago). He’s driven me to the hospital and doctors as well as running quite a few errands. This has been especially hard for him as he adores his father.

After a short, clarifying phone call today (Friday) with the oncologist we met with yesterday, we’ve had them call Hospice so Hank can get the pain relief he deserves while staying fully aware.

We’re all devastated yet Hank has come to terms with it first. He knew weeks ago, something else was wrong and he had plenty of time to think during his hospital stays. He has no regrets, feels grateful for doing work he loves to do with so many good people. He’s proud of his work, says he’s lived a good life. His son is the light of his life. Hank and I have been happily married for 29 years. He is the love of my life.

Hank probably won’t be able to speak with all of you so he’s asked me to thank you for being a part of his life. You are all good people.

I’ll update as time allows. I thank you all so much for caring so deeply for Hank, and in turn, for myself and our son. It warms my heart knowing how many of you love and appreciate Hank. Truly, thank you. ~Lisa (Hank’s wife)

 

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