Sunday, December 30, 2012

EPOCH Done, Heading Home

Last night Phil finished his EPOCH. We asked to stay one more day and the Drs agreed. This Chemo experience was very different then the first one- much harsher. Phil has experienced constant vomiting, shaking, intense pain and depression. He has lost his hair, and is skinnier then ever. He was unable to get out for bed for weeks until today, with a few exceptions. The Drs encouraged him to get up and do laps, but his condition was too overwhelming to do so. Any movement or ingesting of food causes nausea. They have started him on Ativan which helps with the nausea best, but also causes him to sleep quite a bit and deeply. Thus he is quite upset when woken up over and over by the nurses.

Tomorrow we are to be sent home, with his pump, nausea medication, antibiotics for a supposed bacteria that showed up in one of the blood cultures and Neupogen injections (to build white blood cells). They will be teaching us how to do them before we go. Of course I will do the injections for him. It would just be too sad to see him puncturing his tummy alone. I am naturally freaked out by blood and pain, but have grown a thicker skin and now feel that I can face just about anything for Phil. It is amazing how love just lifts you up higher then you ever thought possible. I am thankful to Jehovah that he trusts I can adapt to this new life. It shows me he believes I am much stronger then I once thought I was. He never let's us be tested beyond what we can bear- and along with the suffering he always makes a way out.

Without his support through friends, family, the congregation and prayer I'm not sure I would be as resolute as I am now. There are moments I wonder if we will ever be able to get over. I can only shield Phil from so much- I must let him be sad, experience pain and the loneliness that Cancer dumps on him. That means I must let go of control, so that he can cope in the ways he naturally must. I also try to find the balance in pushing him gently in the right direction. With keeping distracted, making plans for visits and helping him to get up and move throughout the day. The latter being his hardest test of all. I am also trying to figure out how much to let him sleep, because laying flat day after day puts pressure on the lungs and also leaves room for infection. The body wants to move, even if it doesn't feel good in the moment.

Friends have been dropping by late at night with pizza, listening to my heart and getting me to laugh in the waiting rooms till 2 am. The boys come by to make Phil laugh, and just to be here. The girls take me out to enjoy shopping therapy ;)

Mom and Dad continually provide rides, food runs and endless support. There are always the texts, cards and emails from you all. I want you to know that although things have never been more traumatic, we are able to keep our heads above water. I put all of my energy into keeping Phil occupied, in better spirits, to deal with the nurses mixups and keep him fed, cozy and clean. It is working as he seems as comfortable as he could be. His main frustration is interrupted sleep all through the night and into the day. Of course the nurses are doing their jobs in checking up and giving him the medications and tests needed, but the lack of continuous sleep has really gotten to him. He is much more tearful and desperate when he has a bad night- so in that area, I think it will be good for him to sleep in his own bed at home.

As you can imagine, with the chest pain still around, the intense nausea, and our questions of just how okay is he- we are not ecstatic to head home tomorrow. I would be happy with returning in a few days when his chest pain subsides. They predict that the pain will lift a bit over time. We have gone through this over and over, where they keep us then send us home too soon. But they did let us stay an extra day today so I have to appreciate that. It is such a help when we are here because I can trust the staff to give Phil what he needs, meals are taken care of and I don't have to take care of the house stuff cause Mom and Dad have been staying there. They are leaving Monday and it will then just be the two of us at home. Although we will enjoy the alone time that we have not had in quite a while, it will be hard I think- for me to take care of everything.

Friends have offered to help in many ways and I will be accepting that as needed. I feel awful that our hardships are effecting our friends lives, but I can't let that worry me because that train of thought would cause us to isolate. I trust that they will say yes when they can help, and no when they can't. That is the key to this whole thing.  Kay has offered to come at the drop of a hat, and I will be seeing how things go while I am alone with Phil. She has been helpful with taking care of household stuff while I nurse Phil and she would be happy to be with us during this time. So I am trying to work out timing. People all over the world do it alone for their mate. We will have to see how it goes. I trust that Jehovah will help provide what we need, especially if we ask him for it.

There are many pros to going home including privacy, uninterrupted sleep, the comforts and familiarity of home, the kitties and the freedom to do as we please. We are focusing on these things and always trying to appreciate how many good things we still have in our life. He is alive, and on the healing path. That is a place where months ago, we weren't so sure we could be. Every day I thank Jehovah for Phil and the fact that I was the one blessed to be his wife. Though times are hard, our love remains and takes root further and further down. One day this will be over and it will all be okay. In the meantime we are trying to laugh more then cry- and we thank you all for helping us with that.

Time for me to hit the sack. Much love,


Sturge said...
This comment has been removed by the author.
Sturge said...

Hollie - once again, thank you for sharing your thoughts and feelings with those who love and support you. It gives us a window in to the unique and difficult world you and Phil are living in, helping us know what to pray for, and how we can help - because ultimately that is what all of us want to do - help you carry the weight of this overwhelming and unexpected burden.

Even though our responsibilities demand that mom and I return home - know that you and Phil will be in our every thought each day. We are confident that your faith in God, and the ongoing support of Hannah, Jeff, Tom, and all your loyal California friends will see you through until we return.

Your mom and I love you both more than words can say, and we strongly encourage you to keep visualizing all the good, healthy times we're going to enjoy together in 2013 and for many, many years to come :-)

Dad xoxo

Anonymous said...

Dear Hollie,
I have thought of you all day and have hoped the day went well - that Phil enjoyed the sun that was out, being with your kitties at home and having some real quiet at home. Sometimes we don't realize the stress constant noise can bring. I hope his body was able to relax. You both are in my constant thoughts and prayers. Thank you giving us updates as you can. Much love,