Saturday, February 16, 2013

All Alone!...

"All Alone! 
Whether you like it or not,
Alone will be something
you'll be quite a lot."
                                ~Dr. Seuss



So we made it past the first treatment and we saw his oncologist Thursday.  Things seem to be progressing, in a positive way.  The medications are working and his doctor seems very optimistic.  We are not out of the danger zone yet, but things are looking brighter.  Aaron's symptoms have already started to calm down.  Partially because of the steroids, but partially because of the treatment.  We won't see any major changes until a couple of months from now, but last night Aaron only woke up 3 times instead of 20.  He has less night sweats and he isn't coughing as hard as he has been, plus he can actually sleep more.  Sleep has been something of a rarity around our house for quite sometime.  From having babies to illnesses.  It's been years since we have been able to sleep well and it seems to be turning a corner for all of us.

Since 2003 we have lived away from both of our families.  When we started having children our support consisted of parents flying in for the birth and staying for a couple of weeks to a month and us saying we didn't need meals or anything during those times, then left to our own devices after they left.  We have always felt that we could handle everything alone and that was just how we were going to have to do it, at least that's what we thought. 

I can't begin to explain how our perspective on life really changes.  I don't wish this on anyone, but I do wish we could all use some perspective on life.  The things I find important now are a little different than before.  I think we put so much pressure on ourselves about making sure we have the right jobs and are labeled as the right type of person, that we lose the importance of what this life is about.  It's about relationships and friendships and helping each other to be successful.  Who cares about the labels.  If we dropped this idea that we all need to conform to the same ideas, we might see each other in a different light.  We might be able to accept each other for who we are and not what we are not.  This life is filled with different types of people and we don't all believe the same or have the same understanding.  That is the way it is supposed to be, but we are all the same in that we are all God's children and that we are here together.  In this life we are always going to have weaknesses and challenges that we have to overcome, but do we have to be alone?  I know we don't, now.  There are so many good people in this world and that we all want the chance to help and serve others.

The other night a neighbor brought over dinner and we expected something from a box, because of how it was listed on the sign up chart.  When dinner arrived it was exactly as it was listed, Macaroni and Cheese, however it was made from scratch and a side of fresh fruit and garlic bread - and it was delicious.  I was so touched.  And I thought how silly it was for me to be so emotional over dinner.  But I realized that everyone who has brought us food has really taken the time and effort to feed us well.  Our neighbor said when she brought it over, that she understood how hard it is to accept service, but that everyone is just looking for an opportunity to help and that it makes them feel good.  :) How selfish that when people want to help, we think we have to do it on our own to prove something to ourselves.  At least to myself.  I am really taken by what her son said as well, he said "what better way to make friends than to serve others."  It's true!  I can't even begin to explain how humbled I am by the service, and it has changed my perspective on life.  Service and love can truly bring a community together and make friends out of the least likely of people. 

When we first moved into this community, it was really disjointed and lots of animosity existed among our neighbors, but over time with some service and activities to bring us together, it has changed and people are more concerned and more involved and care more about each other.  Isn't this how it should be?  Shouldn't we all be working together even with all our differences.  There are so many good people in this world and service can change us to be better and see this world in a different light.  I don't mean to get on a soap box, but I have to admit that it has been a hard lesson for me to learn.  I have had a lot of trust issues and to allow others to help us has started to heal that part of me.  I have to admit, I still feel guilty, like I am not able to concur this alone but alone is something we shouldn't have to be in times of need.  And it feels good to have a little less stress and a lot more sleep.

Sunday, February 10, 2013

Un-slumping yourself is not easily done...

"And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done."
                               ~Dr. Seuss


For almost two months our family has had quite a few slumpy moments. It's been hard to pull ourselves out from underneath all this stress.  We have had a lot of support since our announcement and I have truly come to realize how much I needed the help and how grateful I am for it all.

What was supposed to be another Marathon week, ended up feeling not as stressful as it did two weeks ago.  I am starting to sleep more and be more present for my children.  It is so important, to me, to make sure they feel like their world is safe and secure, because they do not need to carry the burden of this illness.  It's not like we keep it secret.  We don't.  We talk to them and have explained hopefully so that they understand, but we do not stress the danger or fear we feel.  And it's hard to balance something like that.  As much as we thought we were doing a good job, our boys started acting out and I realized the stress was getting to them as well.  After a long week of temper tantrums and fits, I was at a loss as to what I could to do help my children.  Then one morning Camden (4) came up to me and said "Mommy! I sorry for being a stinker."  From that moment on he has settled down and I haven't dealt with the huge tantrums since.  It's amazing what these little people can do and understand.  At that moment I decided, I had to really make an effort not to get upset either and be calm and in control, it's hard and I work on it everyday, but it's something I know I need to do to help my children.

I have wanted to update several times this week but because of all the appointments from Brody's Monday surgery to Aaron's Mom coming in on Tuesday, to Aaron's PET Scan and my work on Wednesday, and ChemoThursday.  We have been BUSY! 

The beginning of the week was hard juggling the other appointmets until his mom came in then things felt less stressful, however Thursday Aaron woke up with a lot of swelling in his neck and face.  The swelling actually started over the weekend with a little in his neck and some pressure in his head.  Thursday he woke up with an extremely large face and neck.  Fortunately, Aaron had his first treatment Thursday morning.  We rushed to the hospital early and met his oncologist before his treatments started.  To describe it, it looked like he was having a severe allergic reaction. 

When the doctor examined him, she told us he had SVC (Superior Vena Cava Disease).  Basically his cancer grew and was putting more pressure on his vessels, causing fluid to build up in his neck, face, and head.  Which means until the tumors start to shrink over the next few weeks, we have to keep an eye out for signs of Stroke.  His doctor said that usually people with the same issues should go to the ER, but because his treatments were starting that he didn't need to go.  The Chemotherapy should clear up all of his problems and there is nothing more they can do to remedy the situation since it is caused by the cancer.

While we were in the Infusion center Thursday, I mentioned that I thought Aaron was the youngest person there.  He shared a room with a women in her 70's who had been doing this for the last 5 years every week.  I'm glad we are not there, and I hope we don't ever get there.  Sometimes I feel like I am taking care of a Geriatric patient with all of his treatment buddies, symptoms and prescribed pharmacy sitting on our counter. :) 

Aaron's treatment went well.  He slept through most of it, when his roommate left I swiped her lazy boy chair until lunch.  It's interesting to talk to the nurses and other patients and see how different each type of cancer is and everyone's treatment regime. Some are in every week, some every other week and some maybe in more or less and everyone has different drugs prescribed.  The more I look into cancer the more I realize Hollywood really dramatizes it.  For instance I watched a movie the other night where this musician/server guy was in love with a deaf girl from a wealthy family.  I thought the story was going to be a Romeo and Juliet story where the deaf girl and the musician run off together, which it kind of was, but all of a sudden the story quickly turned into a cancer story where the lead guy within 5 seconds of finding a brain tumor was balding and puking in the toilet. Not quite reality.  Aaron was tired through his treatment and when he came home he looked a pasty yellow because of all of the drugs, but he had quite a bit of energy.  Friday he did fairly well and visited a few sites for his job.  Friday night he started feeling a little queasy but took his anti-nausea meds and has not had any problems since.  He is definitely tired and sleeps a lot, but he has not lost his hair yet and won't for a few more weeks.  Plus he does not visit the porcelain bowl for upchucks, thanks to all the other meds to manage his side effects.  With all the money that has gone into cancer research, it is getting to the point where patients like Aaron may not even have to have extreme treatment regimes, as long as the reseach continues.

Things are finally in place, his treatments have started, and we come to this place again.  The place I call this blog.  Waiting for the treatments to shrink his tumors and his life to be out of the danger zone.  I don't know when that will happen and what comes next but life can turn and change at anytime, so we just have to see where it goes from here.  Thank you for all of your support, prayers and well wishes.  We are so grateful for everything we have been given during this time.