Tuesday, February 26, 2013

Blessings In Disguise

So sorry for the lack of posts, once again. I always feel guilty writing when things aren't great round these places. But I should be honest and let you know how Phil is doing, regardless.

I'll start with the good stuff. Phil has not experienced any nausea since he has come out of the last chemo! It is so amazing on many levels. He's off nausea medication which is really good, and subtracting the feeling of being sick is one less thing for Phil to worry about. Also Phil came home off the Dilauded pump. This is a huge step in the right direction. Also Phil has gained 7 lbs! He is eating more and looking a little less gaunt. Knowing that he will be free completely of cancer in 3 more chemo sessions keeps us going. I noticed a little 5 o'clock-shadow-mustache yesterday too! It tells me when this is all said and done that his hair will grow back and he will feel good looking in the mirror again. Though I do think the bald look suits him!

Now the not-so-wonderful bit. Coming off of high doses of pain medication is one of the worst things on earth to experience. The kind of drugs he has been on are basically heroin but in prescribed form. If you've ever watched a show about people trying to quit heroin, you will understand how hard it is. This is not something the Dr or nurses ever warned us about. And the last thing on earth Phil and I ever thought he would experience is dependency and detox on pain medication. The sheer surprise of it has been hard to get our heads around. Phil, being the warrior that he is- had taken it into his own hands to try and go cold turkey off the meds. The result was unbearable, and with the Drs advice, he agreed to weaning off. It is a long process when you choose to wean. The hardest days are over, and now he is down to very, low doses. Thank goodness. I do want to tell you what it was like for him in a nutshell, because it's so important for Phil to know his sufferings are understood by his dear friends.

We tried to keep him as distracted as much as we could with tv, movies, good food and company. We had been up in the nights together getting through detox. He experienced feeling extremes in temperature. Hot, and cold. Then he had hours of coughing fits for a few nights. He couldn't leave the living room because the other rooms in the house are a few degrees colder and then the coughing will go on and on for longer. His lungs are extremely sensitive to dampness, and the cold. I keep him on the couch with lots of blankets and the fire.

Part of being on so much medication for pain these past 6 months is that your emotions are numbed. Many days Phil would space out and feel nothing. Once in a while a single tear would fall and yet he couldn't explain why. Now that he weaned off fast (his own choice, which blew away the dr- as he had never seen someone get through detox this fast and bear it as he has), months of bottled up emotion have burst free, like a champagne cork. When a human has seen and experienced the horrific things he has, he will need to cry and cry till he can't cry anymore. That is basically what the Dr ordered. He will be getting help with depression and getting through the detox with much needed support. This helps everyone in the end, very much.

Yes, Phil's cancer is almost completely erased which is literally, a miracle.
But unfortunately Phil is left with emotional scarring that will never go away. I tell you this not to be negative or look for pity, but to be honest so you will understand if we are not excited about Phil's progression towards physical health. It is embarrassing that we cannot be purely happy yet over the news that his cancer is almost gone. It is mostly because we are still in the thick of it, and Phil has become more weak emotionally then he ever has been- but also because it's hard to accept good news completely. Both of us will never be the same again. We hope that sooner then later, this whole year will be a blur- a distant murky memory that we could maybe even laugh about in some ways. That's how Phil is, with his dark sense of humor. It will make us stronger in the end. But right now it's still really hard.

I want to tell you though how close this has brought Phil and I together. I can imagine it seems scary for a couple to go through so much and come out of it as a healthy unit. But let me put your mind at ease. I understand and appreciate Phil more now then I ever could have. And he reassures me with watery eyes daily how much he has come to understand me as far as depression, and some of my limitations because of it. You can imagine how much that means for me to hear. Though he was always discerning and understanding in amazing ways throughout our marriage before cancer, now he can say that he really does get what it's like to not be able to control thought patterns and the way those brain problems effect everyday life. He also expresses his appreciation for my care-taking, my nursing him and helping him to stay afloat emotionally as well. He notices every little thing I do for him and he will not hold back his praise and loving words and embraces. It IS possible to get through disease like cancer, and come out of it with a depth of love that you just wouldn't have received with it.

Phil is very private about his emotions, as you may know by spending time around him. When he does talk- he jokes, but rarely lets anyone know what he's really feeling. Those who have heard him express his opinion or show true emotions are truly blessed with a rare moment of truth- a glimpse into the man he really is. Although I had known Phil better then anyone as his wife, he still was very quiet and uneasy when it came to saying how he really felt about things. I realized it wasn't personal, but rather - he is just that strong silent type, that I hoped in time I would truly understand. For him to have let all his barriers down for me, is such a gigantic step. Having experienced hell in the way we have together, our bond has been reinforced into steel. He has told me many times that without me, he would never have made it. I get choked up every time I think of it. But Phil has saved me in so many ways too- and together we can face anything.

I cannot say that we have come to this point without a key element though: Jehovah. Without the ability to throw our endless burdens on him day and night through prayer, without a hope of a time when both Phil and I, and everyone will be free of any sickness, painful memory and even death. Every moment of our days we have the drive and the reason to fight. Knowing the pain that we are experiencing is shared with him, maybe even more so as the one who created us head-to-toe...how could be give into desperation? None of the sadness that we and everyone on earth experience will last. We talk about the earth being transformed into paradise, we make plans for things we can't wait to do. A better life is ahead of us now, when Phil gets better yes- but the distant future holds exciting things for us to really fight for and envision in the dark moments too. Not one day goes by where we have gotten through the day on our own account. Not one moment actually. Jehovah has provided us with endless support, encouragement and assistance through friends and family. He has not forgotten us in our darkest hours, but instead gives gifts of help when we need them most. I feel we could never thank him enough or properly.

Let me thank you all for your continued concern, which we feel in your texts, cards and gifts. Your embraces when we meet, in your dropping off dinners and treats, in listening to me ramble and cry and not make any sense in the wee hours of the night. I hope one day we can give back even a part of what you have given us. Each and every one of you have shown up or texted in the most amazing moments where we NEEDED to feel thought of. It's almost laughable, how overwhelming your love has been. We thank you so much.

Next Friday is Phil's next chemo treatment. Phil is finding it very hard now. He experiences panic after a few days in that bed suffering. He is scarred emotionally from that bed. Your visits keep him going, as they do me. We are in there for 5 days. If you feel you would like to come see us, do text me at any time. Phil experiences cravings for certain foods on certain days, and also loves to watch Jeopardy every night. There are many little things that could make a difference in his hospital stay if you wanted to be a part of his experience. Texting me is the best way to figure out what would be best that particular day.

Kay is flying up Thursday which is a complete lifesaver. Mom and dad left this past weekend, and having mom here for the last month has been such a huge help. The cats have recently picked up Ringworm once again (not worms, it's athlete's foot basically, a fungus). They had it as kittens when we took them in and it was very hard back then. I'm trying not to overthink and worry about it now. People deal with treating it differently, but everyone knows that you must quarantine, disinfect, bathe them and so on. I have already built the quarantine walls in our dining room, and the whole area including the bedding, litter box, toys, walls and floors must be bleached every 4 days. Both cats must be bathed twice weekly. It can take up to 4-5 wks to clear up completely. This is DURING chemo. I will time that particular week so that I will take just one day off from hospital to go home and take care of the cat stuff.

I'm sure I could drop off the babies at a vets and let them take care of it, but it's just too expensive and I think I would worry more about them there, then if I could provide cuddles and warm loving care myself at home. It will be very tiring, and I am already completely drained in every way right now but hopefully Kay can help a bit. I feel horrible asking her to help AGAIN, but she insists she wants to come. How could I ever show enough appreciation to our family!? This is the home-stretch I hope, because I am starting to wake up with stress headaches, and feeling a desperation that comes from inability to dig up mental or physical energy at all anymore. I'm trying to pray as much as I can for strength. Thankfully Phil is the most appreciative human alive and he makes it all worth it in the end. We both just need this to be over. We still have at least 2 or 3 months ahead, but I'm trying not to think about that right now. This is how I am forcing myself to think:

After this treatment there will be two more chemos. Nothing could be more exciting! He will be cured! He will need a while to regain his muscle mass to work again, to work on his car, to golf and to do all of the magical things we look forward to doing. One step at a time. One day at a time. We can do this.

Thank you so much for keeping up to date with this blog.
Your supportive comments keep me going.
Much love

Tuesday, February 12, 2013

Heading Home Again

Today we head home, and are discharged from the hospital. Chemo went as well as chemo can go and now Phil can enjoy the comforts of sleep uninterrupted and the feel of his own bed.

We are still in shock about the good news, and we're having a hard time getting it to sink in! Every day is long, hard and painful so knowing there are months ahead- that makes it hard grasp his progress. This probably sounds very negative, and it is- but we are tired and Phil can't even begin to imagine 3 more chemos ahead. We have reached the 7 month point, and are guessing when it's all said and done he will be back to reasonable health within 6 months. I am not sure how long it will take Phil to rebuild his body, wipe out the clouds of chemo brain, and I am also uncertain of the fallout after everything (emotionally). But as soon as he has gotten caught up on sleep from treatment, we are going to push him physically to get ahead of the curve.

This round, Phil and I have had alot of time alone in the hospital and it has actually been very special. Having friends and family around when chemo was new and scary, literally saved us. But now it is really just old hat, and we know the drill. We have had little gems of conversations, sometimes in the middle of the night, or just at a random moment in the day where we talk about things we look forward to doing together when he is better. Those plans are keeping us going, and get us excited about getting healthy again. Both of us look forward to having control over what we eat, how much we can sleep, having the energy to study more, get back to meetings and service, and exercising. He wants to take me on a road trip to Oregon. We just look so forward to having a normal life again. You can imagine how happy he will be when he gets back to work, and on weekends, gets to work on his car with friends, or go golfing.

Thankfully time has passed very fast and alot of memories that were once raw have become blurry. The one thing that is new for both of us though are moments of post traumatic stress. Phil will get a flashback and remember passing out in the bathroom and hitting the floor. I can't go to certain places without feeling panic. Smells, tastes, ICU signs, hearing others talking about cancer, walking by families crying in the halls, looking into room after room of sick people all day everyday. We can't wait till we are out of here and in time, over the emotional pain we are carrying. "The worst day of your life is only 24 hrs" - well, if you remember that every day, you can control your emotions during the ups and downs.

Mom has been coming over in the evenings to watch our shows with us, and picks up whatever Phil is craving in the moment. She is staying another 2 weeks or less, I have lost count. Then Dad will fly up and spend the weekend, and then they'll drive back. Mom and dad text and chat, flirting all day ;) Although I have a ton of guilt over Mom spending so much time here, and them paying for flights, etc she insists that there's no where she'd rather be. She's amazing! She has been home with the kittys, which takes a huge load off my heart! Phil can't wait to see them today. They have been magical in his coping and healing process. Animals are so special in that way. They make us laugh all day, and then when they feel like it they love to cuddle and that just calms the heart so much.

3 weeks from today will be another chemo, and we'll do it all again. But then we will be that much closer to this whole thing being over- and that is exciting. We want time to pass fast. In the meantime we are trying to enjoy the positives of Phil being home and us being together 24/7. Not many families ever get a chance to experience that. I realize how special it is. We are hoping Phil, in about a week or so will be up to getting to a meeting. I would love to get back to meetings as well- it just isn't the same listening in on the phone. We long for the hugs of all our dear friends, and the encouragement we really can only find once we walk into the kingdom hall.

We have started to make a list of things Phil can do to keep himself busy, and ways we can get out of the house or even receive encouragement. A few things Phil has gotten excited about are going thrifting and yard saleing, playing scrabble with friends, COOKING (sooo cute!!), and doing family study with friends. His appetite has been okay, and he is still loving anything creamy! Pasta, soups, casseroles- anything creamy he loves. He has been craving alot of unhealthy stuff, but as I've said before I can't worry about it. He is down to 125 now, and that is just dumb. We need to get him fattened up any way we can. Here are other things he's loving right now:

-Twix bars
-Snickers ice cream bars
-Caramel center Drumsticks
-Ferraro Rochet (dark, milk chocolate and coconut, heart shaped box)
-McDonald's hot fudge sundae with peanuts
-Tapioca and Chocolate pudding

 -Cheese pizza
-Hot dogs (he likes Ball Park brand)
-Potato and cheese perogies
-Grilled cheese

-Vitamin Water

-Panera Bread: Baked potato soup, Clam chowder soup ( I love broccoli cheddar w baguette)
-Mcdonalds: Chicken sandwich or cheeseburger with fries and chocolate sundae
-Taco Bell: anything!
-Little Caesars: Cheese Pizza
-Pasta Pomodoro: Shrimp fettucine alfredo

That's all I can think of right now. Love you all and thanks once again for keeping involved in our life by reading this blog. You mean the world to us. Hang in there yourselves!!

Thursday, February 7, 2013

Quick update

I have had the flu, as does mom. Everyone here has it. Phil is in hospital starting chemo tonight. Amazingly friends have been in and out to b w him. Its killed my heart to not b there beside him every minute. I wont be contageous by tmrw so ill b there when it gets yucky (second day of chemo). Drs replaced stent that was out of place and festered. His billirubin is back down to normal number. That took a week as his levels were high.

Pet scan results r epic revealing disappearance of all tumors except for small bit left in chest area. 3 more chemos after this one and thats the plan if all goes smooth. We're still in shock. I want to let go of wry but cant and wont just yet. But im letting myself wry a WHOLE lot less. I must recoup but ill keep in touch soon. Much love!