Standing Tall Through it All

This week's blog comes courtesy of My Michelle.

We have thankfully approached that one year marker of Richard's diagnosis of stage IV esophageal cancer. I say thankfully, because the odds were against us and all evidence was pointing unbelievably, to a different outcome.  I often get asked "I don't know how you do it?".  Well the truth is, we really don't have much of a choice.  To give Richard the best possible chance, and the best quality of life, we have a chemo treatment plan, we have a follow up and testing plan, we have the excellent care of a health care team who are determined to help us get through it all.  Where we do have choice, is how we think, how we feel, how we treat one another, keeping connected with family and friends, and choosing to "stand tall through it all".

Standing tall, is not a new concept for our family.  It has been a value we have tried to instil in our children - encouraging them to stand up for what they believe in, make their decisions and then stand behind them, always be proud of who they are and to hold their head high.  

In a literal sense, it was one of the things that first drew me to Richard.  Richard always has stood tall, with a great sense of posture, always standing up for what and for those he believes in, always proud of who he is and our family. Richard has stood tall during his career in education, with his peers, his students and their families.

Richard has also approached his cancer journey, standing tall.  As his wife, it is one of the most difficult things to watch him go for treatments, supporting him, but not able to make it go away.  It has been worse with COVID 19 restrictions, where I can't even go into the treatments with him or sit by him in the chemo suite to keep him company.  I drive him to and from every treatment, make sure he is as comfortable as possible, that our bedding is changed and ready for his nap when he gets home (nothing is better than fresh sheets and blankets!), and that our home "sparkles and shines" and is as germ free as possible. He always walks into the hospital with his head high, his backpack confidently on one shoulder, and with purpose in his step.   I try to be strong, be his advocate and his comfort when he needs it.  I don't always stand tall, but I try.  I am a migraine sufferer and have found that I've had a few more than normal over this past year.  On one particular day when it was particularly bad, our kids said to me "Mom, you can't get sick.  If you go down, we all go down."  Certainly, more than ever I feel the need to stand tall and be strong, our family depends upon it.

I know we (and I) don't always have to be strong, that it's okay to give in and have a good cry, to reach out to others for a helping hand, and in fact it is healthy and necessary to do so!  Asking for help, and accepting help, helps us all "Stand Tall" and also gives a chance to others to share the load, and we can maybe "Stand Tall" together.

Proud to Stand Tall through it all and together, with you,

Love Michelle

  

A Blessing and a Curse

This week has been both a blessing and a curse for me and my family.

The rollercoaster ride that cancer can take you on is always mixed with both positive and negative news. There are ups and downs, highs and lows and sometimes you can experience both in the very same day! Small victories and minor defeats are part of life as a patient with cancer, especially a stage 4 cancer patient. As a family we try to celebrate the victories and downplay the defeats. We pray for as many small victories along the way as possible. We are thankful that we have had a few!

This week we experienced both a small blessing (at least we think it is) and a minor curse (hopefully). In a previous blog I mentioned that my medical team has been monitoring a small tumour in my brain that they were unsure of whether or not was cancerous.  Last week I had my next scheduled MRI followed by my consult with my radiation oncologist . I am pleased to report that they feel that this tumour is not cancerous. They will continue to monitor it but its a small victory! We take it when we can get it!

On the concerning side, my hiccups have returned and are becoming more frequent during eating. It is becoming difficult to eat tough meats like steak or well done meats. At the moment, I seem to be able to tolerate other meats but need to cut them into smaller pieces and eat them slowly. My years in education (both as a teacher and administrator) have trained me to eat fast (and usually on the go!). I have had to slowly retrain myself to slow down while eating. Still a work in progress according to my family. 

In my blog post Food, Glorious Food! I talk about how I had to change to a liquid only diet. Let me tell you that this is something that I hope I don't have to return to. A liquid only diet is not something that I would wish on anyone. Don't get me wrong, I will struggle through it if I have to.

When I start to hiccup at the dinner table or have difficulty eating, you can see the look of concern on the faces of my family members. This is probably due to the fact that it reminds us all of how my cancer journey began and what it has taken away from our lives already. My hope is that this is only a small set back. Only time will tell what is in store for me regarding food. In the meantime, we will consider this a minor curse and hope for the best. I will continue to eat all my favourite food (minus the well done steak) until the point where this may not be possible.

I encourage you to savour the flavours of your favourite foods (don't take them for granted) and enjoy the social interactions that eating together with others (family & friends) provides. Celebrate your blessings, no matter how small, and don't forget to enjoy your steak (LOL).

Richard

Blessing or Burden?

Delayed One Week

Last Monday I went to get my blood work done in preparation for my second round of chemo. Blood work is usually done one day prior to chemo to ensure that you are healthy and strong enough for the treatment. When meeting with my medical oncologist to review the blood test results last week, I was surprised to find out that my white blood cells were lower then expected and he informed me that I would need to wait an additional week before I could start my chemo treatment. This came as a surprise as I felt healthy, optimistic and my eating has improved so much over the past week. I was concerned that this was perhaps a bad sign. I have only had one round of chemo so far, was my body not able to handle the strong chemo meds. What would this mean for me?

Blessing or Burden?

My chemo plan calls for one week of chemo and then two weeks off. During the chemo week, I spend one day in the hospital to get two out of the three medication intravenously. This takes approximately 5 hours in the hospital. The third medication is given to me at the end of the session in a bottle containing a balloon of medication. I take home the bottle and wear 24/7 for five days. It contains slow release meds. I plan my life around these treatments. I usually don't feel that great for three or four days after chemo day at the hospital and then gradually start to feel better. During the second and third weeks my health (and mood) improves so we use this time to get back to our 'to do' list and our 'bucket list' items. 

Michelle and I are planners. We like to make lists and schedule things. We have a white board in our kitchen to record upcoming events and use a monthly calendar to record appointments and important  dates to remember. Yes, we are both GOLD personalities.  We find that if you set objectives, write it down, we are more likely to make it happen. As well, with the multitude of appointments, we needed to find a way to keep track of them all. We keep a binder of print outs of all our appointments as well.  Thank goodness for dry erase boards! 

The uncertainty  of my appointment schedule and treatment plan, really creates limitations on these pre-made plans. One thing that is for sure, our lives are now much more unpredictable. This can cause additional stress for those of us that like to have a plan and be organized. We have had to adjust and modify on the fly. We have to adapt and change direction as needed. On the positive side this gives us a chance to live in the moment and be more spontaneous!  But definitely out of our comfort zone.

I have come to understand that many cancer patients have had to wait additional time between chemo treatments and that this is something to ensure that our bodies have recovered enough to be able to handle the next treatment.  The goal is to build up and strengthen, so it can handle being broken down again!  It is the darn cancer cells we want to kill out, but some healthy cells are collateral damage along the way.  It is difficult to wait as I want to move forward to try to remove this disease from my body as quickly as possible. Patience is needed.

So is it a blessing or burden to have to wait another week? I would have to say it is both. On the one hand clearly I am responding to the treatment, but on the other hand could a delay also give the cancer cells a chance to regroup?  Flexibility and patience are my new best friends. These are new character traits that I am learning to add to my repertoire!  

Richard