Wednesday, January 9, 2013

Home and Next Chemo Update

It's been over a week since I have updated you all, and I'm so sorry for that. Since mom and dad returned home my daily tasks have doubled and I just didn't have the mental energy to write anything. However this morning the cats are extra hyper and woke me up early enough that I have some free time ;)

Phil is doing okay. About as you would expect. When we first got home he was vomiting often, but now since I have tweaked his nausea medication just right he has not vomited for a few days now. I would say that the edited EPOCH treatment did effect him a little more intensely. We have been resting, watching Jeopardy, spending time with friends and Phil has even had a few outings he's really enjoyed.

He is still very skinny, pale and losing more and more hair on his body. The main frustration is his extreme fatigue. The mixture of all of his pills, the dilauded pump and the effects of Chemo have taken him to new levels of exhaustion. Now more then ever he is experiencing "Chemo brain". Yesterday I have finally seen him break down in the realization of what his life and body have become. He said, "When I look in the mirror I really see how sick I am." He felt wistful and tearful all day, beginning with a Drs appt. checkup (which went alright but no positives yet), and ending with an amazing visit with Joe, who brought Phil back some epic biblical translation books from his Oregon trip. I am so thankful that you dear friends know just how to adapt to the situation, and always provide loving and encouraging words to him and I.

I think Phil is past the point of putting up a wall that he is alright, and I think that is ultimately good. Now he can receive the emotional support he needs. On the other hand it is the saddest thing I have experienced- seeing him so truly broken hearted and unable to keep the tears back. As you can imagine he is showered by my embraces, soft touches, kisses and encouraging words. I am trying my very best to provide a positive yet understanding outlook. I keep the house clean, make him whatever he wants to eat, coax him to watch funny or light tv shows, and of course read/listen to upbuilding biblical thoughts. As I have said before, on a day that he can handle it, friends can change his whole mood. It is hard to grasp the fact that one good day could make a difference- but to us one day feels very long. When we have you around, you give us back a sense of normalcy and happiness and it refreshes us completely.

Tonight Kay flies in, and many thanks to Dan and Ashley for picking her up in SF! We will have tomorrow to catch up on laundry and prepare/pack for Phil's next Chemo treatment on Friday 11th. I have come to know exactly what is needed in the hospital room, and there is nothing left to guess about. The best way to transport clothing, books, craft stuff and gadgets is in a suitcase with wheels that you can pull behind you easily. I'm sure this is not a very interesting fact, but I am throwing it in here for those of you who might one day need to stay in hospital for a few days. We will be back in Oncology, and we always hope for the "Big" room. We know all the nurses in the Oncology wing, and Phil has his favorites. It is hard for me to give up my control of Phil's perfectly timed medications, what he eats, and the amount of stimuli that is brought into his space. However EPOCH only lasts about 4 days and ultimately is what will save him. So discomfort is a very small price to pay.

So Kay will be here for support during this Chemo run, and already some of you dear ones have offered certain days to come see us, color with me, and just be around when we need you. All depending on how Phil handles the Chemo, how little he sleeps, and the amount of nausea he experiences, I am sure he would love some company. Spiritual conversations about recent experiences in service, or some of your personal study discoveries are really what he craves the most in his dark days. Although he likes to keep it light and sometimes just watch Jeopardy or sit and listen to others talking around him, his ultimate is deep, spiritual conversations. They are what give him priceless perspective, hope and a reason to fight. The best times for visits in the hospital are late afternoon and evening. Phil and I are not at our best in the morning, as we are always catching up on sleep we lost in the middle of the night because of the nurses in and out.

Letter Writing with Hannah and Emily <3

The weather is beautiful here- cool to cold, with filtered sunlight and grey skies. We cherish the rain. Phil and I both love winter in California. We cannot be more thankful that he got sick here, as opposed to anywhere else. The fact that Kaiser is literally 7 minutes away from our house, and that is considered the best hospital location for Oncology. The JW House close by for free meals, a nice shower, or just as a hub for me to escape to and meet up with a girlfriend. And of course the unbelievable support of the Mountain View congregation. Not only Mountain View but friends from other congs that we have met as well! Without our spiritual community I can't imagine how depressed and lonely we would feel. Knowing that countless friends are around praying, thinking about us and offering help when needed- it just takes that hard edge off of how much of a nightmare Cancer is.

We pray all day, on and off. I have just downloaded the Kingdom Melodies (vocal verson) onto our tablet so we can learn the songs better, and have some beautiful music to listen to together. The new Jehovah's Witnesses website has become a place we visit often for encouragement. It is just so full of videos, articles, experiences that it seems you could never have time for it all. But it has truly been a blessing and such a huge step for the organization as far as reaching all those who are searching to learn the bible. If you haven't already checked in out, here's the link 

Once again I apologize for not updating sooner, but I will have more time when Kay arrives to zone out and write here more often. Feel free to text me anytime, and I will reply as soon as I have a moment. If you want to send Phil an encouraging text saying you are thinking about him, or maybe send a quoted scripture that he would like, definitely do that. He does get stressed when he is asked questions, but if you simply say hello and your warm thoughts, that would be something he'd appreciate. He may not respond with more then thank you, but know he received it with appreciation. Also remember that Chemo brain causes him to forget things hours after he's heard them. So don't feel hurt if he can't recall something that normally he would.

 It is difficult to grasp the sheer amount of support, and then realize that we may never be able to give back what you have given. Please know that one day your time will come for needed support and we WILL be there with comfort for you.


If you are interested in knowing what Phil is enjoying right now here are a few things:

<>Drinks: Chocolate Boost drinks, Arizona green tea, 2% milk with any desserts, Hot Cocoa

<>Food: Fettucine Alfredo, Mac n Cheese, Cheeseburger and fries, Grilled Cheese-w Tomato in it too), Turkey or chicken with stuffing, gravy and mashed potatoes, Bananas

<>Dessert: Banana Bread (loves the banana loaf at Starbucks), Chocolate pudding, Chocolate cake, Box of Chocolates

If you'd like more info on foods we like you can go here

So many of you have been asking what Phil needs at this time. 
Here's a few things I have noticed he could use.

<> Soft and cozy beanies to keep his head and ears warm (for indoors)
<> Cozy slippers when he wants to walk around the hospital. He is size 10.5-11
<> An anti-moisture pillow for between his legs and his head for sleeping. During chemo he sweats a lot.
<> Really sound proof and comfortable ear plugs. It seems he is always losing his and they are key to a good night's sleep for him.
<> Comfy pj pants, size small. Cotton would be best in view of the sweating. However he loves cozy fabrics like fleece for after Chemo, at home.
<> Books/mags about woodworking, classic cars, cute animals (we love to laugh), nature, history

I'm off to make some breaky, and I look forward to hearing from you all and seeing you soon. Much love and thanks for everything. Hollie xo


Constance said...

Hollie, I know how busy and sleep-deprived you are, so I'm really proud of you for writing this new entry.

I know that a big reason Phil has less nausea is because of how diligent you've been in administering his meds. You're a good little nursey wife!

Please be assured that I'm prepared to fly over the second you need me to. I miss you both so very much...

and really need to watch T & T with you and Jeopardy and 60 Minutes with Phil! :D

Love you more than words can say,
Mom xoxoxoxo

D┼żesika Devic said...

Love you and Phil!!! Thinking about you guys all the time. We don't have Phil's number but please pass on the message that he is in our thoughts and prayers constantly.

Sturge said...

Hollie, thanks so much for taking the time to take us into your world so eloquently, you're such a great communicator :-)

We're glad to hear Kay is flying in, and know that she will devote 100% of her energy to taking care of all the household chores, so that you can continue giving Phil all of your attention. Just to know that you won't have to worry about laundry, dishes, kitty litter, cleaning, vacuuming etc for a week is so comforting. Please give her a hug for us.

It was so good to hear Phil's voice on the phone last night. He does sound exhausted, but determined too, which is what we all have to be. Also, give Joe a hug for us too, for his kind generosity in bringing those unique gifts that mean so much to Phil.

Like mom said, let us know when you need her to help out - she's loving her little adobe, but more than anything misses being there with you and Phil, who really is like a fleshly son to us both.

We're so proud of you both, and love you so much. Looking forward to seeing you soon.

Dad xoxo

kristy said...

Thanks for the update Hollie. A capable wife Phil has found. Keep doing what you're doing and Jehovah will bless you in ways you can't even imagine. Keep yourself well.

Give a shout out to Phil for us. If you can tell me what colour Ferarri he would like I will start to look. It's clear by the picture that it should be on his want list. I think he deserves it. Tell him to stay strong and know he is thought of often.

Team Phil!

Love B & K & Rogue

Marie said...

Hi Hollie and Philip sorry i have not been in touch before now i think about you both every day. Hollie please give Philip a hug for me just do a day at a time a know everyone wishes you well. lots of hugs Marie Sneyd