Quality of Life and Hard Decisions

It's been a while since I've done an update here, and I feel like I have more thoughts then I can put up on social media, so here I am...

As some may know, I was diagnosed with stage 4 mantle cell lymphoma in January 2022. I went through with the initial treatment of chemo and it was hard. I ended with a stem cell transplant to lock in my remission for as long as possible, as this is an incurable lymphoma. 

I have been going through the recovery period since then and doing the maintenance immunotherapy that was prescribed and I have been sick for the better part of a year now.

It started in October 2022 and I have had every respiratory infection, 100 times worse then anyone else, along with digestive issues, lightheadedness and not being able to function properly. It has been a long year for me.

Oh the first day of school my mom called me an ambulance, I couldn't move, I could hardly breathe and I was vomiting. They paramedics got me on oxygen straight away, my sats were under 90 and I was rushed in. 

It was scary, I was terrified. They asked me again about ventilators, end of life, did I want everything necessary done if needed for life. Who was my pet of attorney for medical reasons... what a whirlwind.

I didn't eat or drink for almost 2 days, was hooked up to IV, Oxygen, had an X-ray a CT scan, and received 3 heavy doses of two different antibiotics.  I nearly passed out during IV placements and felt awful for the staff.

They said I had pneumonia and they wanted to clear it out as quickly as they could. I was admitted to a private room. I was then told that I also had Covid, so was isolated and everyone who came to see me had to gown and mask. 

I was finally able to start eating again, then they switched me from antibiotics to steroids and I had to start monitoring my sugar levels (steroid induced diabetes is my thing). 

I lost the ability to smell and taste my food, but it felt good to be able to eat again. I was starting to be able to breathe again then my IV line blew up in my arm. They had to remove that one and use the smaller one today had found for my CT scan. 

All this time, I was worried that my lymphoma had returned and I was beside myself at the thought of staying the brutal treatments again... 

The oncology team had a look at my scan and said that it didn't look like it had come back so that was relieving. 

I really started to feel better and after about 7 days I was feeling like I haven't felt in years! I was so happy at the idea of coming home and getting back to life with the kids. 

During this time I started connected with the group of people that I met on facebook who all have or are caring for loved ones with MCL and we were discussing the different treatments.

When the first diagnosis came, I knew nothing, I was scared, looking at the end of my life, and I just blindly followed the plan. It was the right thing at the time for me.

Now, I'm questioning this maintenance part of my journey, I understand the desire to stay in remission for as long as possible, and to do anything possible to get there, but when do we stop and say living a quality life is more important then the treatments?

I have had a good week to process this all and I am planning on stopping the remaining treatments. I'm tired of being sick, not being able to get up and move around, being in bed so much and just not living. 

Some people may not understand this part, buy I'm starting to understand the "quality of life" concept that I've always had a hard time with. 

It is time for me to live and enjoy and create memories with my family, to look forward to trips, to enjoy planning and cooking and having silly movie nights. 

I'm looking forward now to going back to work soon and I feel like my head is completely clear again!! 

It has been a long time since.

And if I don't get the full 5 year remission that was potentially going to happen, and I only get 3, I will have had 3 years of good living before going through the next set of treatments. 

I'm good with that. 

Anyhow, these are my ramblings for today, I'm feeling so good and clear, organized and healthy, and my mental state is in an amazing place right now.

The Questions That Knock You Out

I'm currently in the hospital again, my 4th round of chemo, second of three for this r-dhap round. I felt much more comfortable coming in this time round because it isn't new, I kind of had an expectation of how it works so that has made it easier. 

I was, however, completely caught off guard with the one question I was asked this time. I think it is the first time for this one. 

"If extraordinary measures need to be taken, do you want us to take them or do you want to be DNR"? 

I couldn't answer him, I couldn't find the words. We have talked about this as a family, what my wishes would be, who is the substitute decision maker, what I want and what I don't want, because this reality is here. 

But that specific question... There are so many other parameters to take into account... How can I make that decision on the spot? 

I answered yes, take all measures... But even that answer has consumed me since it was asked. 

How do we decide, not knowing the situation, that DNR is right or wrong? What if you would live a completely normal life, it was just some fluke? What if you say yes, do everything and you end up with no quality of life? How can one decide in an unknown moment? 

I'm not worried, I know I'm going to be fine and that isn't going to be an issue, I know that I am receiving the most amazing medical care, I know the plan that is in place for the remaining treatment has proven an amazing and long outcome, even without a cure...

I just got caught off guard...

We all have an expiration date. They are different and none look the same. How do we choose to live before then? 

We make the choice to savor every moment, complain less, be thankful more, notice the small things, cherish everyone, reach out to others when you feel prompted. 

We all go through life with different battles, different struggles, different lives, but we all need to choose to live one way or another.

I choose to live as though I'm alive, instead of living to die. I'm going to have an impact in this life. I want to hear that I've changed people for the better...

What do you choose?

Effects of Chemo - The Fatigue is Real!

I am getting ready for my 4th Chemo treatment. 

I am feeling tired and exhausted all the time. Some days I really don't want to get out of bed, but life ya know...

There doctor has said that they may need to delay my next treatment until numbers come up and the fatigue subsides a bit...

I don't think I've ever really understood what true fatigue is, it is literally not being able to move, not even to just pick up something across the room, it is being so out of breath just going up the stairs, it is laying in bed and feeling like you disappear into the bed...

I don't know if it is because of the treatment or if I'm just falling down a dark hole again... I've been replaying everything from the beginning - did I make the right choices? Should I have waited and gone through the process to preserve eggs so we could attempt a pregnancy after? Should I have said yes to the clinical trial that was offered to me? 

Everyday lately this is what has been in my thoughts. It is real. These questions make me sad and I find myself on the verge of tears a lot. 

I get up though and go through my daily life. I take care of the kids the best I can. I go to functions, I drag myself around because I know I can't just sit and stew about decisions that can't be undone. I try to put on that face and make sure everyone knows that I'm ok.

I feel ok and I don't feel ok. I don't know how to describe it. I want normal and I don't want normal back. I want to go back to work and I don't want to go back to work. I'm so mixed up...

I've had to answer questions at the hospital that involve substitute decision makers, end of life planning, what things need to be in place in this case... I don't feel like I'm old enough to have to make these choices. How does one make these choices when they are just diagnosed and at what I consider "not old"? I should still have decades to make these decisions.

The way I'm feeling right now, the fatigue, the exhaustion, the body pains, it makes these conversations hit harder all of a sudden. 

I know I'm a fighter, don't get me wrong. There is too much to live for... And number 1 on the list from my therapist was "stay here" so that is the plan, but I'm struggling a little bit...

And tomorrow is a new day, and maybe I need to talk to the doctor about medication again, and I know I'm going to be ok, I'm just struggling a little more then I would like...

The C Word

This is a post I wrote when I first was being diagnosed...I hadn't decided to share it at the time, as I was still processing everything. I am thinking I'm going to start working through this right now and this is a good start:)

February 5, 2022

The C Word that I'm referring to is not covid, but cancer...

Processing... I'm in this stage of a big change in my life and I'm processing. 

I knew something was going wrong since December of last year and I pushed my way through multiple visits to the ER. Finally after 4 of these visits, I was sent for a CT scan. I went for the results immediately and was told I had some swollen nodes in my throat.  I was referred to an ENT to be seen immediately for a biopsy. 

That was exactly when our family contracted covid and the biopsy got bumped. I finally had it last week and got the results on Monday, January 31... 

"Consistent with B Cell lymphoproliferative disorder"

I just sat there, alone, listening to this... Because we aren't allowed to have a support person in during covid. I asked the doctor to repeat it and she let me look at the page. 

She talked about the cancer center team that would be in touch with me and about the forms of treatment - medications, radiation etc...

That was Monday. 

Tuesday I received phone calls from the team starting the intake process. 

Wednesday I spoke to the hemotologist and set up 3 appointments and picked up a medication prescription.

Thursday I took pain meds and lorazepam and headed in, for the first time, to the cancer center. I was having a bone marrow biopsy, in the chemo clinic. 

I was on the verge of tears walking through. Seeing so many people there. Knowing that I am now a cancer patient. I had the biopsy, which was really stressful and not fun, but necessary and had bloodwork completed. 

Friday I went for an echo and a full body CT scan. I should know the formal diagnosis hopefully by Monday. 

These are the facts. These are the realities. 

My anxiety has been high, my blood pressure today was 151/100. I'm trying to breathe and cope and manage. It isn't easy.

I cry a lot. I screamed in my car last night. I'm scared, but at the same time I feel like I am no different. I don't feel like I have cancer. I am happy that I am getting help so quickly. I am a mixture of so many random emotions.

I feel like I'm going to need an outlet through this process. I'm going to do some journaling here on my blog when I am overwhelmed or processing. 

Feel free to follow along as I take this new road...

For Such A Time As This

For such a time as this, this is found in Esther 4:14. It was said as a means of encouragement to Esther that she had been created for the very purpose of being queen, for such a time as this.

I have had this verse in my heart for a few days now and I feel like it must be there for a reason.

For such a time as this…

How could this verse mean anything to me, in the part of this journey that I am in? I'm not a queen, I'm not ruling anything, I'm not in the same place that Esther is, but it keeps calling me.

For such a time as this…

I'm maybe gaining a better understanding of what this verse means to me, right now, at this time in my life.

This past year has been a long and eye opening year for me. I have been through some personal struggles, my husband and I have been through some relational struggles, we have experienced losses and griefs that not many people know about.

It has been a long year. But it has been a year that I can now look back on and piece together some insight into where I am now and where I am headed…

And "for such a time as this" makes sense all of a sudden…

We started a year ago trying to conceive a child. This was a dream that both my husband and I had. There were some obstacles in the way, and while we walked the path that we thought was correct, it was not successful. A lot of money, a lot of medications, a lot of testing and a lot of our life revolved around this. I'm not sure that many people can understand the impact that secondary infertility can have on a couple, but it is real. We cried, we have grieved, we have been angry at God and still hopeful for possibilities and miracles…but it wasn't meant to be.

This process seemed to change me. I began to close into myself and cut myself off from a lot of people, even those that I loved dearly. I needed time to process what was happening in my life, in our life and figure out what my priorities were. It became a little bit lonely, but gave me the time to think and just be still and quiet. I felt like I was teetering on the verge of depression and I knew I couldn't go back there again.

Then in what seemed the next moment, there was a new issue that arose in our marriage.This one is private, it is for us right now, but it consumed every part of us. We sought out counseling, we took steps that were necessary, we screamed and cried and grieved again. We questioned things and we questioned ourselves. With help, we are continuing to rebuild our marriage and make it strong and unbreakable. We are not perfect, we are not ever going to be perfect. The difference is, we know how to fight fairly, we know how to ask for what we need, we know that it takes a lot of work and not being afraid to be open with each other. We continue to be a work in progress.

After starting individual counseling, I realized that I needed to work on me. How can I be a good person, a good mom, a good wife if I hadn't dealt with my past hurts. That is also a lot of private stuff, a lot of things that I hid away and just hoped would not resurface. Little did I know, it needed to come up. I am still working through my past but I have at least acknowledged things. I have forgiven people. I have forgiven myself. I can see how doing these things have and continue to change me. 

Things were starting to look up again…then the whirlwind hit.

Surprise!! Stage 4 mantle cell lymphoma. Because we obviously have not dealt with enough this year…what's one more issue? 

Looking back, I can see all the things that we thought were so awful in the moment, were leading us to this part of our journey. 

If we had been successful with conceiving, how would I feel having to choose between a baby and my treatments? I couldn't imagine how that would feel…that is what you see on TV and you think, what would I do? I would never want to be in that position. 

I'm thankful that it worked out this way. 

If I hadn't started to pull back from people and take time to be quiet with myself, I would not have been in a position to be strong enough to manage this diagnosis. I grew a lot over the summer, I became more independent and more confident in who I was as a person on my own. 

I'm thankful I had that solitude when I needed it.

The fact that our marriage could have fallen apart at the next point, but we have chosen to fight for us, together, has given me a partner who is standing firmly at my side, supporting me through in ways that some people may not see. He lets me cry with him, I can talk about my fears, I can be open about my true feelings and he still loves me.  We are not perfect, as I said, but we are real and our love is real.

I'm thankful our marriage had a shake up in order to show that we are in this for the long haul, together.

Individual counseling for me, just solidified the fact that I need to keep working on myself. If I'm going to be a strong person, a role model, I need to be healthy in my mind, body and spirit. I'm still getting there, but I'm moving forward. 

I'm thankful that I've been able to dig deeper into my beliefs and know that I'm coming out a stronger person. 

Lymphoma…this one incurable and rare, yet treatable and liveable. 

For such a time as this…

We need to change how we see life as it passes us by. We need to recognize that while God knows we may be angry at times, and scream at Him in frustration, that He is with us in it all. He walked beside us as we cried and grieved, as we struggled and fought, as we learned and grew and He is here with us now. 

He has never left us, and people may question how I can follow and love a God that isn't just "healing" me right now, the thing is, I can see the big picture. I can see how He has held my heart through this all. I can see how He is continuing to help me through this. 

Do I pray for full healing, yes, I do. But I'm also praying that my life can be some kind of an example to those that are struggling out there. Those that are grieving, those that are crying and screaming and yelling…

And I know this isn't over, this is just the beginning, I have a long road ahead of me. Exhaustion, fatigue, nausea, hormonal changes, major interventions and hospitalizations, I still want to be me, I still want to be real, I want to bring hope and love and laughter to everyone. 

I want to be a light in this dark world…

For such a time as this, I'm here for such a time as this...

Epilepsy and The Summer

Faith has had a lot of struggles in her life, but she (and we) push forward and through whatever tries to come our way.

Last summer was a particularly difficult summer. Faith was having, at one point, over 100 seizures a day. I took six weeks off work to be with her throughout the med trials and changes.

The school year had been so much better. Back into a routine, growing, learning by leaps and bounds... Not very many big seizures at all. It seemed that everything had settled in her body.

Now, we have this pandemic, routines are out the window, the world is opening up a little at a time, and we thought, hey let's go for a BBQ and let Faith go for a quick dip in this pool:) (all while taking appropriate precautions, don't worry;)

Faith loves to swim, it is her all time favourite activity. She jumps in and is having so much fun, then all of a sudden says she's having a seizure.

My sister and I, both trained in physical restraints, managed to get her out of the pool fairly easily and we laid her down to let the seizure run it's course.

She came out of it, rested and was back to enjoying and entertaining is all!

I was looking up swimming effects with epilepsy, and saw this..

I've never heard of photosensitive epilepsy, but now I'm wondering if this is something that Faith may actually have? It says it is rare, but we seem to be the rare family... I wonder if Ontario has this kind of testing?

http://www.bcchildrens.ca/our-services/hospital-services/diagnostic-neurophysiology-eeg-emg/evoked-potentials

Has anyone else experienced this? I don't want her to have to give up the one activity that she loves so much!!

Christians and Government

Wow, another post...

I have some things rolling around in my head and I am going to work through them here. Bare with me on some of these thoughts.

I'm so proud that my girls made the decision to attend the Black Lives Matter March in our city (over 20,000 people showed up!!). It is something that we talked about before they went. What were their reasons, could they verbalize them if approached by someone. Did they understand the risks involved with the ongoing pandemic. Did they understand the risk of a riot, just in case that happened and what would they do in that instance? I sent them with PPE and they brought their signs, that they spent the night before painting.

This whole situation has opened the door for some amazing conversations to take place in our house. We have always been an open family. The kids have been raised to be independent thinkers. Even if their beliefs or choices go in a way that myself, or others, don't agree with. They can stand up and speak with confidence why they believe what they believe. Their world view is bigger than their own backyard. I'm pretty proud of them.

There have been lots of discussions popping up around these marches that are happening around the entire world, in support of Black Lives Matter. Positive discussions, negative discussions, opinions etc...

As a Christian, it has really bothered me that so many can say "the government has put in these social distancing rules", "no groups of more then 5" etc... And are coming down on Christians for going against the authority of the government.  Discussions about how protests are allowed, but attending church is not.

First and foremost, I believe that church is not a building. Church is not having coffee in the lobby before or after service, church is not only in one place...WE are the church. Believers are the church. Church can be in your house, your workplace, in nature etc... We need to continue connecting with our church families, checking in on each other, supporting each other the best we can. We need to remember not to let the lonely slip through the cracks.

I also understand that people not being able to attend a service in a building yet can attend a protest, seems unjust to some. Both matters are important yet drastically different. We are currently in a pandemic, yes. Attending church means sitting side by side, for up to 2 hours. Means touching items, chairs, toilets etc...a protest is a one time event. People respected each other, everyone wore a mask and it was outside. Will there be a rise in positive numbers? Maybe. Does the risk outweigh the benefit? I personally believe so... My opinion.

Now, if I'm correct, the Bible is full of instances of people standing against the government. I grew up listening to Bible stories reenacted on cassette tapes... Yes, I said cassettes!!

One example that I can think of, off the top of head, is the story of Moses. He was born during a time of Hebrew slavery. In order to curb the potential to lose power and control, the Pharoah ordered all Hebrew male babies to be killed.

Moses family hid him, until they no longer could, then they placed him in a basket, in the river, and he grew up in royalty.

Had Moses family not gone against the governments order, how do you think the story would have ended?

This is only one story, one example.

The people who change or rewrite history aren't often the ones who sit quietly and wait... They are the ones who stand up, who speak up, who are willing to take risks... They are the ones who see others, learn from others, mourn with others and fight for others.

That's it for now... There may be more later!