Thursday, 28 July 2011
Hello Blogger Friends!
As you may have noticed I haven't blogged in a little bit and there is a reason for that.... there isn't much to blog about.
Nick is now wrapping up his second week of radiation and so far (knock on wood) aside from a slight scratchy throat and some fatigue he hasn't had the side effects that sometimes accompany this treatment. He now even has some uber soft peach fuzz growing atop his head.... the doctor said that this new baby soft hair is likely to fall out again but it certainly made me smile when I noticed it and his baby brother sure likes to touch it.
When Nick was first diagnosed we knew that this experience was going to change everything, there is no part of ones existence that cancer doesn't effect when it swoops in and overtakes your life.
My views of many things have changed and one of those areas is friendship.
I would like to think of myself as a good friend, I enjoy seeing those that I love experience positive things and I enjoy being a part of the lives of those that I hold close but I realized that I gave my friendship away to easily and even worse I required nothing in return to keep it.
Nicks diagnosis changed every part of me without my permission but the one thing that it showed me was who was indeed my friend, sadly some that even shared my own blood were not while others that were complete strangers before quickly obtained a piece of my heart.
In the months that have passed since we found out about Nick's cancer there have been MANY of my own family members who haven't bothered to pick up a phone, pen or even send an email, there have been friends who at one point were very close and yet have only been in contact a very few number of times. Its always the same, I dont hear from them but then when we bump into each other in a public setting I hear the same thing, I was just going to call you .... I smile and nod all the while thinking yep sure you were.
I have experienced such kindness from people that are complete strangers (Kurt's teachers dental hygienist sent us a Shepherds pie!) and yet those that claimed to love me disappeared when I needed them the most - its sad but at the same time I'm glad because my time, energy and emotions are better saved for those that deserve them... like you all. You who take the time to read my private thoughts, send me messages of strength, check in to see whats going on in my life aside from the cancer, promote my new photography business, sponsored me when I did the Relay For Life and have just done the things that TRUE friends do!
You who know that a few strokes of a keyboard can accomplish the same thing as a big giant hug - I appreciate you all more then you could ever know.
The social worker has said that this often happens because people just dont know what to say so read carefully because I am going to help you just in case you ever need some guidance, just simply say..... I dont know the right thing to say but I want you to know that I think about you often and I am here if you need me.
I have never expected my family or friends to hold me up, coddle me, be at my beck and call, babysit my kids, fund my increased expenses or take over any of my responsibilities; I have merely expected them to not vanish from my life. If that is too much to ask then in the ever honest words of Kurt - Good Riddance!
Thursday, 14 July 2011
The medical term for Nick's newest condition is called Cancer Induced Anorexia but whatever the term its hard to manage.
Last week we discovered that Nick had lost 15 pounds over a two week period. We tried for 6 days to put on some weight using meal replacement shakes but we didnt have any luck so Nick now takes a medication that is designed to increase his appetite. We were told that this medication for some people works well and for others not at all, it could also take 7-10 days to begin to work. If Nick continues to lose weight then we may not have that long before needing to move on to a more drastic intervention - a feeding tube.
When first approached about the possibility Nick was admanent that he did not want one but yesterday after only being able to injest two mouthfuls of a blizzard he asked that I call the doctor and make the arrangements.
One would think that gaining weight would be easy, If I even smell that wonderful fried chicken KFC scent my thighs each grow two inches but for someone with cancer its not that easy.
Most often Nick doesn't feel hungry and during a rare moment that he does if he doesn't eat right that minute then the moments passed. The time that it takes me to make a sandwich or heat up some soup often results in a missed opportunity to consume some calories. His body also doesn't seem to want to digest any fats, if he attempts to eat any meat, fried, heavily sauced, or overly rich foods he is slammed with gastrointestinal upset and vomiting. Internal organs use calories as fuel to function and because Nick's are already compromised from the tumors he is at greater risk of them shutting down. To ensure that they stay aware of whats going on inside of him, Nick now gets a weekly chemistry blood work up in addition to his regular level check. It seems like one thing after another but we are getting through - my family is a force to be reckoned with and has a take no prisoners attitude - cancer has overstayed and now needs to take a hike!
Wednesday, 6 July 2011
Today I again revisited my motto, The pessimist complains about the wind, the optimist expects it to change, the realist adjusts the sails. Things never seem to go according to plan and today was no different, it was Nick's radiation consultation and it was less then easy to say the least. We were initially told that if Nick needed radiation it would take 2 weeks, however that was incorrect. It is actually 14 business days for his chest, 14 business days for his abdomen and 14 business days for his pelvic area with a 2 week break in between - for a grand total of 14 weeks IF Nick's levels dont drop and he doesnt get any viruses.
Here we were prepared to be done treatment in two weeks and now it looks like he wont be done until October. His treatment length has pretty much doubled and I have been made into an unintentional liar. Nick isn't almost done, he doesn't only have a little bit longer and my frequent words of reassurance were empty lies which have left me feeling like an unequipped mother.
For the last few weeks things have been very hard for Nick and tears have come often, he is tired, emotionally drained and physically sore; I have frequently heard him say that he is ready for all of this to be done and he doesnt even care about the outcome.
Today was the straw that broke the camels back. During a break between appointments Nick took off from the hospital, standing right outside the doors that I carried him out as a newborn 15 years ago we today spoke of the possibility of him dying if he refuses radiation. I never in my wildest dreams envisioned having a conversation with my child about his possible death should he decide not to continue being poked and prodded like a lab rat. He agreed to go back in but the tough front was short lived, once fitted with his immobility mask and locked onto the CT table for "planning" he became claustrophobic and began to have a panic attack. I was called in to comfort him and months of anxiety, fear and emotions came flowing out. In front of about 10 people I held my son and reassured him that he could do this, that I know his strength and that I would stay with him until the end. I asked if he trusted me and with a quiet nod yes he laid back down on the table. It was against regulations but I stayed in the room and with an amazing amount of bravery Nick completed the planning scans and got his marker tattoo's.
Our days will now consist of daily trips to one hospital for radiation and then to a second hospital on a weekly basis for finger poke and level checks - if I thought that cancer consumed our days before I havent seen anything yet.
I hate watching my son suffer and hurt, its horrible to not be able to do a damn thing to ease his worry or pain.
For the last month I have been working on a surprise. I have planned a big party for the 26th of August to celebrate the end of Nick's treatment which we believed would have been this month. The banquet hall has been booked, the menu planned, the invites for 100+ people made and the centerpieces discussed with the designer.... It was like a kick to the gut but tonight I called and cancelled the event.
I dont recognize my life, I dont recognize my son and things are falling apart all around me; I've gained ten pounds and dont seem to be able to get a handle on the poor food choices and emotional eating and I've had to reschedule Maxwell's 18 month vaccinations four times now... the boy is 23 months old!
I need to get a handle on things, to reassert some control, to find some sort of normalicy again - maybe when I do that I will be better equipt to deal with the drama, emotions and chaos that most days bring.
The only thing that I can control through out all of this is me, my emotions, my behavior and my choices.
I am not a pessimist and wont complain about the wind nor am I an optimist and wont expect the wind to change.... Ever the realist, I am left with no choice and there is only one option.... let the adjustment begin.