numb

Today I'm forcing myself to sit and write down my feelings. I really only like to blog when life is good. I have been avoiding writing this, but this blog is a place for real feelings to be documented. I don't keep this blog for people to feel sorry for us or for self-pity. I have a passion and want Presley to one day know and feel what this cancer journey was like. She is too young (Thank Heavens) to really remember everything going on. I'm sure she will always remember her port (with the scar to show the proof) and have some emotion and physical memories to these crazy times but for the most part, time will erase most of it all. It would not be fair if I just documented the happy times.
The past 9 months I have been numb. Numb feels better than to really face those harsh depressed feelings. Feeling of unfair, anxiety, hate and anger. I try hard to hide what is really deep inside my heart. No one wants to be around someone who is depressed and full of anxiety, so I hide it. But if you spent a week with me (as a fly on the wall) you would see it loud and clear.
I'm wore out, and have wrinkles and gray hair to prove it. I just look at myself in the mirror and feel I have aged 10 years.
I have come to really dread any holidays. It seems the times you look forward to the most are ruined with the monster of cancer in one way or another. This past week was a time to spend with family and be thankful for all you have. I spent the week worrying about Presley not having a bowel movement in a week and ending our trip sooner to be closer to the hospital as I felt a trip to the ER was on its way. People has asked "How was your Thanksgiving?", I just look at them like...that just happened? I don't have anything really to say about it." I was preoccupied with making sure Presley was doing ok. We spent Easter and my Birthday in the hospital, we had clinic on my anniversary, 4th of July in the Emergency Room, Thanksgiving I was too worried about fevers and bowel movements to even enjoy myself. Everything with cancer is complicated. I'm sure many would think...why worry yourself sick about a bowel movement. It have been 6 days and nothing...I knew that the next step was in the hospital with an NG tube put down her nose to clear the blockage. Not just an enema or a suppository, the risk of bleeding and getting bacterial infection in her blood is too high so NG (feeding tube) is the only option. A fever? No big deal right? I know it's the weirdest thing. With Crew, he has had the same upper respiratory virus I feel his head, feels like a fever I give him some Advil and put him to bed. SIMPLE. Not with a cancer kid. Fevers mean the ER. I hate fevers. Fevers never happen when clinic is open. Oh I dread fevers. When the thermometer reads even 98.6 my anxiety is at about 100%. Presley's temp usually runs in the 97.8 range. Crews temp, I have no idea of what's normal other than the typical 98.6. Not because I don't love Crew or give his less care but that it doesn't really matter. Fevers just mean he's got a bug. With Presley a little bug is not that simple.
 People keep asking what we are doing for Christmas? I'm scared really to make any plans. Being let down time after time is too hard. So it's easier to not have plans, then you can't get let down. I get panic attacks even thinking about it. I have days when I think who cares just plan something and get excited. Then as yesterday approached it happened again. We have been looking forward to "Skating with Santa" and getting to watch Presley turn the SLC lights on as the featured "Make-A-Wish" kid. She has been talking about this for 2 months. She was not herself, showing signs of being cold and her stomach was hurting. She managed to get through the event and put a few smiles on her face as she always does but when we got home she had spiked a fever again. So we went straight to the ER. We didn't "enjoy" last nights event as we should have. Just thankful for family and friends who came to celebrate with us, their smiles and hugs did make it better. Those faces among the crowd as Presley pushed the plunger and lite the sky with colorful holiday lights are our strenght! Thanks to each of you, you know who you are!
I can count 3 times in the past 9 months that Paul and I have gone on a date and tried to do something to keep our marriage alive to little or no avail. These hard trials test a marriage to its core. We have fought more in the past nine months than for the other 6 years of our married life put together. We know and realize its because we are under so much stress. We also know that if we can stay strong and support each other our marriage will see blessings for being stressed to the very last thread. If it's not our marriage or Presley's cancer treatments I'm dealing with Crew and his separation anxiety. Its not just your normal 18 months -3 year old separation anxiety. He has been a late talker due to all that has gone on in his little world. One sentence he can say is "don't leave me". He is apprehensive when Grandma and Grandpa come to visit wondering if we will leave him once again.
With Paul losing his job, we are so thankful and don't know how we would have survive this past 9 months with him working. There are also those comments when people ask "are you looking for work?", and you wish for one moment they could walk what we have dealt with in the past 9 months and they would understand. Yes he's looking for work and trying to get his flight training finished to be fully complete. We try to explain to people and just end up saying...we live a crazy life. And as some say "I didn't realize that this was that big of a deal".
I don't write these things to try to be bitter or angry. I don't expect people to understand our daily trials. I don't understand the pain and hurt involved with infertility issues or with the death of a child.
When I look back on the past 9 months I often realize that we have been in survival mode, or just plain numb. I deal with insomnia, PTSD (post traumatic stress disorder), I have lost 20lbs and gained 25lbs back all in 9 months. I cut all my hair off, it was falling out from stress. I battle depression and anxiety and adrenal fatigue. I often don't even have the energy to get up and do the daily tasks needed for living.
I always pray and hope that my family and friends know and understand why I might not be the best friend, sister or daughter. Being numb and in survival mode leaves you a little emotionless. I struggle to find the right words to really say thanks and to really show other my love for them for what they have done for me. I can just hope others are aware of this and don't judge me for being better.
This past week I think I have really come to hate cancer at a new level. I have seen how our family has been affected by this trial. I was hopeful that Thanksgiving would feel like it did last year. So carefree. We were on a 19 day break from Chemo! I was hoping we would feel normal for 19 days. I wanted Presley to really enjoy these 19 days. Knowing that when it was over (on Monday) she would start a chemo (6mp) for 540 days straight. Yes its a lower dose, but 540 days and not getting that 19 days off.   We are only 8/9 months into a long 2.5 year trial. But on the positive note we only have 18 months left. When you think of it that way it seems a lot easier and like we are almost done. Only 18 more scheduled clinic visits. Oh those days are hard. So today I'm thankful for only 18 more. And only 6 more back pokes! 6 MORE...I'm going to starting counting down!
I'm trying hard to really focus on feeling again. I want to feel joy, feel love, feel the magic of Christmas. I want to feel again and not be numb. It is emotionally hard to pull yourself out of the numbness and force yourself to feel.