Wednesday, 29 June 2011
This past Tuesday we met with Nick's oncologist to learn the results of his latest scans, these scans would tell us how successful the chemo is and if he was finished with treatment.
From all previous conversations everyone was confident that this would be the end because Nick had been classed as a "rapid responder" but sadly this was not the case.
The scans indicated that Nick's tumors have not shrunk enough, especially the ones in his internal organs and therefore he must move on to radiation as he has completed the dosage of chemotherapy that his particular cancer diagnosis calls for and anymore could result in over toxicity.
The tests did show that there are no new cancer cells and the ones still in his body are no longer "active" and rapidly dividing so I suppose that is good news.
This isn't really a step backwards but it feels a bit like it because we were hoping to be done treatment, to be in remission, to enjoy the rest of the summer and look forward to the start of grade 10 back in high school but instead we are now going to be doing radiation instead of vacations and the first semester of school will again take place at home because his immune system remains compromised for 6 months following the end of treatment.
Yesterday wasn't a good day for me emotionally, the only way to describe how I feel is like this.... everyday its like there's a little whimper inside of me and for the most part it stays that way, quiet and subdued just an internal emotion that's easily overlooked but every once in a while that whimper decides to lose control and turn into a full blown scream - Its during this time that I feel deflated and fearful, that I accept that this is now our life and that no matter how put together and organized I come across, underneath I am at times out of control and filled with negative and ugly thoughts. Its during these times that I admit to myself that odds dont always work in our favor and that positive thinking doesnt cure physical ailments. Its during these times that I wonder if God listens to prayers from someone who is really angry with him and its when I wonder if I will recognize within myself if things get to the point where I am not coping well enough to be a good wife and mom... will I neglect my family without noticing because I am caught up in my own emotions..... The thoughts are like a hurricane in my head.
After posting the test results and treatment plans on my Facebook profile I found myself annoyed and irritated with the amount of "congrats on the end of chemo" replies that were being posted.
I thought, can they not read, do they not understand .... Nick is done chemo because he CANT have anymore safely so instead they are going to blast him with radioactive waves - what part of that is reason for congratulations???
I read on the report "minimal to moderate shrinkage of the nodules as compared to the first scans" - those words certainly don't make me want to high five anyone.
I know that my friends and family love me and want to celebrate the positive steps... even the tiny baby-steps but my emotions got clouded for the moment.
I was confused and angry, I felt lied to by the doctors with their 60% shrinkage blabber. Their calculating method makes for some misunderstandings, how they do the math is they measure all of the tumors/nodules and then come up with an average figure by combining all of the measurments, they then do this again after the repeat scans and then compare the two results. Seems simple enough right? What they dont tell you is that if there are very large nodules in an isolated area those individual spots can come down in size while the others dont move much. This was what happened in Nicks case.... the softball sized nodule on his clavicle shrunk considerably but the ones in his torso only shrunk slighly but because the calculations are averaged out it sounds as though there was 60% decrease in the cancer overall.
I asked what happens when he is finished radiation if there are still nodules and the answer was - nothing.
We then just watch with follow up visits to see if they again become active or grow resulting in a relapse and then we start all over again.
I wonder how we are ever going to function normally with possible time bombs throughout Nick's system just waiting to detonate again .... or not.
While at the clinic I spoke with the social worker whom I adore, there is something about her that makes her feel more like a friend then a clinical professional.
We talked about Nick's wish and if I've started planning it yet and we also talked about my photopraghy.
She took a look at some of my work and asked if I would be willing to send copies to POGO (pediatric oncology group of ontario) to possibly use in their cancer awareness campaigns. She also asked what I thought about maybe joining an organization called Now I Lay Me Down To Sleep which photographs stillborn babies and terminal children.
Photography is something that I have always loved and enjoyed doing but I've never really had anyone tell me that I was good enough to perhaps do something on a more professional scale until recently - I'm intreagued by the possibility but am certainly not going to dive into some cockamamie business venture only to fail horribly. I think that investing in a professional style camera and maybe some classes at the local college may be the best way to start off.
So now summer is here, the kids are all finished school and I am very proud of how well they all did.
Kurt has graduated from IBI (intensive therapy for autistic children) and is entering the regular school board in the fall, Riddick is doing better and won the most improved student award, even with a hearing impairment Maxwell is communicating above our expectations and while battling a debilitating disease which left him sick and sleeping most days Nick managed to obtain his science credit.
All of my children have an internal strength that leaves me in awe, give them a hurdle and they will leap over it without question, nothing stops them, nothing gets in their way.
Like little lion tamers they have the ability to harness my scream and return it to the little whimper from which it came so that we can resume our "normal" lives.... whatever that may be.
Wednesday, 22 June 2011
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.