This most recent round of chemo was the 6th of FOLFOX and Avastin, and was marked by a few significant points. Firstly, it was the 80th round total of chemotherapy that I have had. I remember after 20 rounds of FOLFIRI thinking that there was no way I was going to be able to make it through another 20 rounds. As it turned out I managed to cope with 66 rounds before it was stopped, and it was stopped because of non-response rather than toxicity. So 80 rounds total of all my chemotherapy is quite an achievement, and not something I would recommend as an overall lifestyle to others.
The second point of significance for this round was that this was the first round of chemotherapy as a father. Chemo renders me fairly useless for a few days at the best of times, but usually that has been something that is easy enough to deal with. I can go to bed, sleep it off, and Hannah just feeds me small amounts of easy to digest food for a few days. With Elise now part of the household there are increased responsibilities that are much more challenging to uphold over those few days. We have been fortunate enough to have been inundated with support from friends and family, and literally haven’t had to cook a meal yet since Elise has been born… But there are a few days that parenting for me, meals aside, becomes a next to an impossible task. Days 1 – 3 of chemo basically consists of having to give Hannah all the parenting responsibilities and I sleep through most of it. Days 4 – 5 are when I start to feel better, but its amazing how just a small amount of pacing whilst trying to settle Elise can leave me exhausted pretty quickly. I am a wannabe parent at this time but with little value to add to the process. Come Day 6 onwards, I’m well enough to resume my normal parenting responsibilities.
There are undoubtedly challenges to being a parents at the best of times, but we have the added complication of chemo punctuating our lives every 2 weeks. We always knew that was going to be the case, and I don’t see why it should stop us from doing our very best. It hasn’t stopped me graduating medical school, it hasn’t stopped me working as a doctor for 3 years, and it hasn’t stopped me from living my life. I refuse to let chemo stop me from being the best father that I can be.
Having your daughter fall asleep in your arms, watching her find peace in your embrace, is one of the magical things on this planet. A completely dependent little human relies on us as parents, and us alone to provide for all her needs. She is the cutest little baby in the world (as seen in her parents eyes) and there is real joy in nurturing her through the early stages of the newborn phase of life. There is delight in watching her open her eyes and having her stare back at you.
…And when she does that, I imagine that she is forming memories of me, her father. The rationalist in me knows that isn’t the case, the romantic wishes it is. Its not an easy thing knowing that unless I survive for years yet, she will only ever know her father through photos, writing, and stories.
…I hope she will also know how much I love her.
Until next time…
The radiation has finished.
This post is in actual fact not a fair reflection of when the radiation did finish however. It actually finished two weeks ago, but the business of not working has interfered with getting around to post an update.
Overall, radiation struck me a lot harder than I anticipated. There was some nausea that was tolerable, but the main symptom that really took its toll was an indescribable fatigue. I have now been off work for six weeks. Initially that time off work was like an unexpected holiday, albeit one filled with the irrational excess of slumber required for sub-normal function, but as the days accumulated, it has a become a tedious monotony of fatigue, sleep, and boredom. Having enough energy to be bored, but not enough to sate that boredom is a subtle but effective form of mental torture. I am well and truly ready for a change back to how it used to be. It has only been in the last 4 or 5 days that I have been able to get up in the morning and feel like I can actually make something of the day that goes beyond TV and sleep.
At this stage, I’m not quite up to going back to work, but I anticipate that I will be able to get back to work next week (starting Oct 14). I am really looking forward to be able to get back to doing something I enjoy, and which in itself is energising.
In the next couple of weeks, I will also have a repeat CT to establish the effectiveness of the radiation, and how naughty the liver lesion has been in the absence of chemotherapy. The pencilled in plan is to start chemotherapy again on labour weekend, this time a combination of 5-FU and Oxaliplatin (FOLFOX), but this will be confirmed closer to the time and will depend somewhat on what the CT shows. The management of the liver lesion at this stage has yet to be established, but I suspect that a lot of that will depend on how responsive the retroperitoneal lesions were to the radiation, what the CT shows, and whether or not a further period of stability will need to be established on the altered chemotherapy regime.
For those whom may not have heard yet, as an adjunct to the baby news. Hannah is now (almost) 25 weeks along, and we are having a baby girl. Pink items have already started to become thematically appropriate, and the yet-to-be baby room has now advanced from a box room to just a room (with a nice new stroller in it)…. Its a work in progress.
Until next time…
When life deals you a bad hand, the best thing to do is to play that hand the best way you know how.
When Hannah and I got married, we had dreams. We dreamed of a life working overseas in the developing world, we dreamt of a future that involved getting old together and building a family together. Our dreams were shattered 4 1/2 years ago when I was diagnosed with cancer, and then shattered again with the first relapse.
We began to pick up the pieces each time, and assemble them into a mosaic. Formally a fractured, broken dream, slowly being re shaped into something new, something different, yet still retaining the original image. Then, one year ago, that rebuilt mosaic was shattered once again with yet another relapse, each blow some how being more definitive than the previous.
That third blow hurt, it hurt harder and it hurt longer than any other…
Yet somehow letting it be the defining moment of my life didn’t seem right. It determined my future, yes; I will die from cancer, but so what?
We all die; some of us sooner than others.
And I know I have been blessed with the life I have lived, and the time I have had since my diagnosis. When I realise that it isn’t all about me, then life is so much easier.
There is freedom in releasing yourself from yourself…. in living for others and not the glorified me.
To which came the decision to let life keep living…..
Hannah and I decided to undertake IVF last year as I didn’t want to leave Hannah at age 40 wondering what if?… and so in the realisation that life is about the journey, and not the outcome, we decided to bring another life into ours.
It hasn’t been easy, we had 3 failed embryo transfers before a successful 4th. The ups and downs of waiting to see if the blastocyst would implant was a roller-coaster of hope and disappointment. In fact, we thought the 4th was unsuccessful as well, until an unexpected text message in the middle of the day from my wife saying:
‘I can’t ring you cos i’ll just cry… I’m pregnant!’.
And with that we have rejoiced in the joy of bringing new life into the world, while at the same time bringing emergency toast to the bed before the vomiting begins. It’s ironic that new life can be so nauseating. 🙂
Sometimes we have a competition to see who can vomit the most in a single day, the guy with chemo, or the lady who is with child.
Celebrate with us please, as we celebrate and cry ourselves about what the future holds. This decision isn’t without consequence, this child will probably never really know its biological father, but I plan on giving him or her a legacy that will endure.
Until next time….