Monday, January 28, 2013

True Love

Me and my dearest Philly on our wedding day 5 years ago <3

Some of my favorite pics of Phil...

I want you to meet our children...err cats! They're a huuuge part of our life and it's time you got to know them! Wolfgang and Minou are brother and sisters! 
Wolfie seems to love his pa as much as I do!

The best little fur bundles in the world - our perfect anti depressants!! Wolfgang and Minou, when they were teeny tiny!

Daddy's girl!

Daddy's boy too!

These lil furbabies are the most precious things in our life. They provide laughter, comfort and warmth all day long. They were so much work as babies, as they were strays with fleas and ringworm. But we fought through it and now they are the happiest brother and sister kits in the world!

They were bottle fed for a few weeks! So much work, but such AMAZING memories!!

Wolfgang, fast asleep! He curls up in between Phil and I at night. When he wants extra love, he gets up and slumps down closer to either one of us and purs till we pet him back to sleep :) He is the cuddly one of the two, always looking for attention. Minou is more of a loner, but goes nuts for cuddles once we get into bed. That is her favorite time of day, and she purs away like she's drunk as we massage her paws and kiss her little nose and head.

Now they are one years old! VERY affectionate to eachother, always cleaning the other's head and neck. They play together with a ball, and sometimes fight and hiss but they listen when I tell them to get along ;)

Two peas in a pod! Watching birds outside the door. Always up to some adventure or being silly. They are indoor cats, because there are so many risks outdoors. It is very hard for me to stick to my guns in keeping them indoors as they ARE animals, but I know its best for everyone because we want them forever!!
Wolfgang (The grey boy) loves to play fetch with a foil ball or an earplug he digs out of Phil's drawer!

They love water (??) and are obsessed with drinking from sinks, and even playing right in the bath filled just a tad, or a bowl of water! Their heads and paws get all wet and they love it. I think it is because I bathed them a few times a week as kittens for their ringworm and fleas. They were too young for medications and it was the only way to get them better. Though they do not need baths now, when the time comes for it, they are well behaved!

Everyone who meets the kits say that they are not like normal cats. They are very social and unafraid or nervous around people. They are doglike, in their desire to cuddle for long periods of time, and especially Wolfie- who picks up a ball, drops it on your lap, and retrieves then does it again! Here is Minou, providing amazing comfort and love for Phil

They are veryyyy intelligent, and get crazy eyes when they want to play ;)

They are besties

Wolfie is a goof!

Minou is a mystery...

Minou wants to be on me when I am doing a craft. It is half annoying half adorable!

Our cats are also bodybuilders..

KIDDING! Those are little socks with the ends cut off, acting as a "shirt" to cover over their flea meds so they don't lick it off. They are old enough now that they don't need them anymore. They were quite embarrassed when I used to put them on!

There is no such thing as an untouched bag. These cats hunt and find anything new that comes into the house and they will chew their way through packaging if they want a bite!

They are just the best! Such amazing little pieces of creation!!!

Have a nice week dear friends!

6 month mark

I must apologize for my absence once again. It's been 6 months of cancer and I am tired, and having a hard time trying to put into words how I feel every day. Sometimes I don't think it would do any good to update unless I have something positive to say, but it has just been too long and you are probably wondering how we are doing. We are okay, keeping afloat. Getting through the aftermath of chemo #3. We have our kitties, our cozy house, amazing friends and family. There is so much magic around us still.

Organizing Phil's meds...

Every day I pray just to be strong, sometimes that's really all I can say. I am carrying Phil in so many ways. We both cry a little bit more now, and worry too. We try not to talk about negative things, but it has just felt long. We are scared wondering how long this will go on. Tuesday is the pet scan, and we are nervous. All we want to see is SOME shrinkage. He still uses his pain pump regularly, and he needs his medication to keep nausea at bay. The last two days he's been off, feeling somewhat feverish and very groggy and tired.
The week before he was doing okay. Every day is different. Who knows really, what's going on in his little body. I know the tone and words I am speaking may worry some of you, but please know that he is stable, and I am just being honest.

Tonight I made Hannah and Jeff a 6th anniversary dinner, and they gave us bullet points of encouragement from the assembly this weekend, which we unfortunately missed. We will be able to get a recorded copy to listen to once it's available. Here's our dearest Hannah and Jeff... The second pic is their "burrowing" motion at each other ;) My favorite moments passed between the two of them are the cute silly ones like that.

I made them leek, goat cheese and walnut pizza and a fruity spinach salad. We enjoyed wine and the Shark's game (they're doing awesome! You can see Jon's reaction in the pic lol) It was a special night.

Lots of ppl are sick and a few friends had to miss it as well. That flu is making the rounds, and it is very evident in the hospital parking lots! Have fun finding a spot! It is nice to be out of there, in the normalcy of our home. We are still unsure when Phil's next chemo is, but we are guessing sometime early Feb. Mom and dad are driving up this Friday. Dad will fly back Sunday, and mom will stay. I'm looking forward to her being here. Although our privacy is amazing, having mom near is a comfort, and gives us a sense of happiness day to day. 

Look at this ADORABLE card and portrait Harley sent us all the way from snowy Bracebridge <3

If you wish to pray for us, please pray for us not to worry. All I want it to relieve our hearts of deep anxiety, and let a lightness overtake my days. I thought I was good at doing that, but it is hard day after day. I had been doing pretty good last week, but the impending pet scan just clouds my mind. Our friends STILL call, text, drop by and offer help and company. Unbelievable. Generosity, never-ending. I don't know where I 'd be without all of you. My favorite moments and conversations are the ones where we plan for the future, laugh and talk like Phil will be better soon. That's all we want. When Phil has a weak moment he asks, why this happened to HIM, and he yearns deeply for the life he had before. I can't imagine the thoughts he pushes away. All I can do is make him smile, and provide comfort through the long days.

Although my goal in life is to make Phil's life as enjoyable and light as possible, I am forcing myself to get out and have fun on my own. Thankfully my girlfriends are always up for some fun :) Last weekend was a girls' night and we had a ton of fun laughing, eating Chinese food and dancing! Me and Tori...

Hannah with little Westin...

Just a few of the beauties I am privileged to call my friends <3

The girls have also been coming over to color with me, and to do phone witnessing and letter writing. It feels amazing to be sharing the scriptures with people during this time. 

Here's Phil being silly last week, pretending his pain pump is a cell phone ;)

I will keep in touch after we get the Pet Scan results back (it takes a day or two to come in), so that would be near the end of this week. I am not letting myself think about anything negative, as there really is no point, and I will feel better telling myself everything will be heading in the right direction. Either way we have a great team at Kaiser, and no matter what, we will fight. How do you keep positive when everything is messed up? I'd love tips. Love you all, Hollie

P.s. Phil's shingles have cleared up!
P.s.s. Ruth we will post pics of your amazing gifts soon! We LOVED them!!!!

Sunday, January 13, 2013

Day 3 of Chemo, Doing Well

Day 3 of Chemo and all is well. Phil has not vomited once!! I gave the drs my carefully perfected medication schedule and it seems to be working very well! Before they would wait till he felt sick, then gave him meds. Then it was too late. I have read that the trick is to keep the nausea meds going to keep it at bay. It is such a HUGE weight off that he is not vomiting yet. We still have about 2 days left. He is very tired and weak, but surviving as he always has.

There really isn't much to update you on, as things are running smoothly and he is getting plenty of sleep. Kay is here watching the kitties and coming in to hang out and grab us anything we need. I am so happy that she never had to see him at his worst.

Phil making a sucky face because I was teasing him about his snack of choice... Note, he polished off this heart shaped box later that night!

Right now he is also fighting the Varicella virus, which is better known as chicken pox or shingles. It isn't either one of those really, but in the same family. It is a red spreading rash on his one leg and going towards the lower back. It does not hurt or itch much. But remember he is on a constant Dilauded drip that might be masking the pain. He is taking antibiotics for it, but it must run it's course. The rash will likely stay there for over a month. It is common for NHL fighters to experience Varicella, as it is linked with low white blood cell counts, or a compromised immune system.

At first I was doing research on it to understand the precautions I should take as his caregiver, but decided to stop because I started to feel dizzy with fear, and it's just not worth worrying. I have learned that there is no point in knowing the ins and outs of Phil's disease. It does absolutely nothing for us. I spend my energies doing what I need to right at each moment. I learn what I must and do it as well as I can.

I give or make him whatever he wants to eat at anytime. Keep him busy, or at least distracted, comfortable and warm. When he is cured that is when I will do the research and put the time into getting him healthy again. Then it will be positive learning. But mixing natural remedies and such while doing chemo is not a good idea. They work against each other, so it is best to commit to one or the other. It is hard to stick to my guns on this one because all I want is no chemicals, all natural. But his cancer has progressed much too far for those luxuries. All we can do is fight really really hard and kill the bad stuff. The good stuff suffers too, but he will get through it. I will never think otherwise. Best thing you guys can do, is make plans with us to do some fun things in the future. Treat us like anything other then a lifetime of fun with you isn't an option.

As visitors, all you need to know is that it IS contagious if you have NOT had chicken pox or shingles, or a shot for them. If you HAVE had the shot or already went through chicken pox, it is almost impossible to get it again. Pregnant women and children should not be exposed just to be safe. I have been around him (without close contact) for weeks now and have not had any sign of it on me. But I had chicken pox when I was about 7.

Here are some adorable pictures from my cousins in Canada who did their nails pink in support of our first day of chemo ;) Totally memorable for life!!

Speaking of visitors, because he isn't vomiting he is much more excited about the idea of friends coming to see us. Although he may not have the energy to talk or laugh, respond etc, he loves just having ppl around and taking in that positive energy. It does wonders for me as well. I know that the hospital is a nightmare with the parking, the chance of catching a bug, and just trying to find the time and energy to get here- but I would rather ask and make way for visitors and risk looking needy, as opposed to feeling lonely and victimizing ourselves in this. That is the last thing on earth we want to do. Our aim is to live as normally and happily as we can. If you would like to visit, anytime after 2 is best, and he esp likes visitors later at night after dinner as well.

Day one was a yucky day, but this was taken day 2, when I felt like wearing pretty makeup and doing my hair. When I am happy, Phil is so much happier.

Text me at any time if you would like to know the room number, address of hospital, etc.
We will be here another few days, likely till Wed or Thu.
I will keep you posted when anything changes.
Much love and thanks

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