In Like A Lion....

In like a lion and out like a lamb.... isnt that the saying? Not for Nick that's for sure.
This week Nick is doing all of his scans to check on how the chemo is working. If all goes well then he should not have to have any more chemo but may or may not require radiation.
This weekend we went away to get my Grandpas house cleaned out as its been sold and Nick decided to come. He claims that its because I worry about him (which is true) but I think that a bigger reason is that he doesnt like to stray too far away from his mommy.
The day that we arrived Nick went out to dinner with his Dad and Grandparents who live up there and he made plans for another visit the following day but unfortunately he didnt get that second visit.
For the remainder of the weekend Nick stayed in bed dealing with vomiting, body weakness and fatigue.
During the ride home Nick slept most of the way only waking to ask for a drink or remind me for the millionth time that he is sure that he is dying.
The following morning within moments of arriving at the clinic he was hooked up to an IV for hydration and anti nausea medication.
When his bloodwork came back his panel showed that his levels had really dropped. His neutrophil count had dropped from 16.3 to 0.1 - his body had no ability to fight for its self and they suspected that he picked up a virus over the weekend.
The nurses as per usual were great and we made arrangements for him to remain at home on an IV instead of having to stay in the hospital.
Nick is struggling right now emotionally, he is hopefully in the last lap of this treatment marathon but he is feeling his worst. He is weak and frail and has so many painful side effects.
We have been dealing with tears often over the last few days and while its completely normal and likely helpful to express, its still very difficult to watch.
Nick has convinced himself that all of these side effects, ailments and conditions that come along with cancer and its treatments are proof of its failure. He has maintained a very stoic attitude all along but I think that its starting to crumble. He is angry about being poked and prodded, exhausted from the physical toll that this disease takes and is terrified of death and how painful it would be if it happened.
When through tears he confides that he feels like hes dying and the treatment isnt working there is only so much that I can say with confidence to reassure him because in all reality I dont have anymore answers then he has - he likely has more answers then I do because its his body.
The rest of this week is more tests and then next week we will sit down with "the team" and discuss what will happen next, but for now its getting through the day and all of the chaos and drama that it brings and focusing on the little reasons to smile.... drinking my tea while its still hot, not being so sidetracked that I burn dinner, remembering to wash the soap out of my hair before I get out of the shower, finding more then one cucumber slice in the fast food salad that I often eat in the van and listening to my boys laugh and play blissfully unaware of all the turmoil that surrounds them.

A Little Birdie Taught Me....

Nothing that we do is ever easy and it seems as though complications and difficulties tend to follow us like shadows, this last round of chemo has been no different.
The round got off to a late start because on the day that we should have checked into the ward there were no beds available, it wasnt until the following day that we headed to the hospital.
Once there we expected the same routine as always, Either Sarah or Allison (the nurses all seem to be named that) would come in and ask about what medications Nick takes despite having his binder which contains all that info right in her hands and they would gather their tools for access.
"Access" is when they insert a needle that looks like a push pin into the port that was surgically inserted in Nick's chest. This will be hooked up to the IV and that is how the chemo is delivered. That night 3 seasoned nurses all attempted to access Nick but had no luck, the pokes were very painful and after three tries Nick got physically sick and I put an end to the attempts at access - the port was broken.
The nurses had to insert a standard IV into his hand for fluids but you cant do chemo that way because it can damage the veins and cause them to rupture.
X-rays were done and the port seemed "mechanically intact" but it still wasnt working, they had only one explanitation, a blood clot must be lodged in it.
We were told that having the port removed was elective and they would send off the paperwork to have it removed but it could take months.
In order for Nick to get chemo they had to insert something called a picc line into his arm which gets threaded into the main ventricular artery.
Nick was able to start chemo but it was clear that the thought of a blood clot sitting in a non function piece of plastic and rubber in his chest was making him anxious and worried. His fantastic surgeon sensed this and made arrangements to get the port removed during our stay.
Four days... two surgeries...chemo and a lot of upheavel.
While I was there I sat down with the social worker and oncologist and had a really good talk.
We talked about the the risks of relapse and about the possibility of a secondary leukemia because of one of the medications that Nick takes. We also spoke about how Nick has made his wishes clear that should there be a relapse he does not want to do treatment again. It would be the hardest thing that I would ever have to do but I would support his choice. The social worker said that its her role to support those choices as well but she reminded me that right now Nick is speaking from his darkest place, his most painful place, his place which contains the most fear, he is weak both mentally and physically and that I should not necessarily take what he says at this point as his honest and heartfelt truth. She also told us that post treatment for most families is worse then being smack dab in the middle because while there are frequent scans and check ups they arent done weekly and for many it feels as though there is always the possibility that there is some malignancy brewing and growing while we try to move forward. She called it the baby bird syndrome - we need to leave the nest and fly, enjoy the skies and behave like normal birds... outstretching our wings and taking to the air knowing that there is the possibility that our wings may fail and we may fall.
While sitting at home letting my brain wander I found myself watching Nick's parrot named Fruitloop. His wings have been clipped for well over a year and his days of flying are long over but yet he still tries to take to the air .... is he stupid or detemined? Why does he continue to try when the chances of him flying like a normal bird arent good?
After a few attempts at take off he stopped, squatted to the floor and fluffed up his feathers - I waited to see what he would do and for a few moments there was just silence.
I then heard Fruitloop say a sentence that is often said to him when he is upset,
its ok buddy. He then closed his eyes and for a moment I thought I saw sadness but I was mistaken  because he then started to whistle a beautiful little melody which was soon accomanied by wing flapping and hopping.
Fruitloop taught me a lesson ..... If you cant fly, you can always sing and dance!

Relay & Reality

This weekend was the Relay For Life and it was my first time participating. The team that I was on did an amazing job and together we raised almost $5000 for cancer awareness.
I am still processing the experience but it certainly wasn't what I expected it to be. It definitely was a time when I felt true friendship and support and I have never laughed so hard in my entire life but I had been told by multiple people that it was a truly "spiritual" experience and I think I missed that part.
I have to wonder if it was just me or if this particular relay lacked that aspect.
The opening ceremony was moving and a young woman with the same diagnosis as Nick gave a speech. She spoke of her diagnosis, treatment and multiple relapses and at that point I did cry because I know that remission doesn't mean a life that's cancer free and that thought sits like a lump in my throat. The fact is that in 20%-35% of cases the cancer returns and I need to find a way to live with that knowledge and continue to raise Nick as normal as possible. I need to try and ignore the fact that at any point in time we could be back in this situation again - how terrified Nick must be, what a thought to live with.
My Wondermom friends were great, I never felt that I needed to be strong out of fear of upsetting one of them and during the two times that I did shed some tears they simply silently passed me a tissue or gave me a hug.
I waited all night for some sort of epiphany to occur, to be so overwhelmed with emotion that I would be breathless but that never came, here I was surrounded by survivors, those still in battle and the people that love them and yet I felt next to nothing for the most part - I have to wonder if I'm broken.
Instead together with my friends we joked, played games, ate junk, laughed and walked for hours.
Next year I will participate again, having no expectations about what the night may hold, letting the emotion come to me or remain at arms length.
I waited for God to speak to me that night and I was angry and disappointed that he didn't. I think back to the girl speaking during opening ceremonies, through her tears she said that her stage III Hodgkin's diagnosis and everything that went along with it was a chapter in her book of life but it wasn't her whole story, after the cheers and clapping subsided my friend and teammate turned to me and sweetly said and she's still here to tell it.
Maybe I was wrong and God did speak to me that night but instead of shouting and loudly proclaiming his presence he instead decided to quietly whisper though the voice of a loving friend.