Who we are

 I have a small letter board where quotes are displayed in our home. I change the quote periodically and mostly they are silly or funny. As I was scouring the internet today to find a new quote, I came across one that hit me deeply and I knew that we needed it as a reminder in our home. It speaks to something I have been thinking about a lot in the past few weeks and actually felt inspired to share my thoughts with my boys recently. The quote says, "The world needs who you were made to be." I asked Malcolm today what he thought it meant and he surprised me by saying, "it means to be me." why? "because the world needs me." Its so true! We were all born with a worth that is individual to us. Something we brought into this existence that no one else can replicate or master. Something that is so distinctly YOU that it can't be bought or sold and the world needs it. In the past I have tried to cover who I am to conform with who I think I need to be. I masked my reaction to adversity because I thought there was something wrong with me for feeling the way I did about challenges. When Jeff was first told he had a brain tumour, he was at the Lethbridge hospital for a CT which was ordered by the dr as a precautionary measure. I had completely forgotten he even had the CT that day but I got a phone call from Jeff telling me they wouldn't let him drive home and he needed someone to come and get him. When I got there, they directed us into a little room with a computer and pulled up the images of his brain scan on the screen. They explained that the tumour was significant in size and a neurosurgeon would be in contact with us ASAP. They predicted surgery within a week and a long road ahead, and do you want to know what my first reaction was? I so distinctly remember sitting in that room thinking "Bring it on! We got this!" I didn't worry about the hard, I didn't cry, I didn't wonder what life would be like, I felt excited for the challenge. I don’t usually tell people what my reaction was and I covered it for so long because I knew that wasn't what a normal reaction should have been. I should have been devastated. I should have been terrified. I should have cried. It may have been that I was young and naive, that I truly didn't know what the extent of this hardship would cost but I knew that my reaction set me apart from other people. I didn't understand at the time how much of a gift that initial reaction and mindset was but I am slowly discovering as I become the person I was sent here to be that I no longer have to hide it and conform to the way I "should" be. The world needs who I was sent here to be. 

Small steps

On my way to work yesterday I was formulating a blog post in my head about the small steps taken every day that add up to big accomplishments. I was feeling particularly happy as the day consisted of me working out at the track with my family, making a healthy and delicious soup from scratch for supper and baking 2 loafs of my best sourdough bread yet. Earlier in the day I also got the house clean with the help of my kids and managed to sneak in a nap before working a night shift. I was reflecting on the accomplishments of the day and realized it took a lot of little changes in my life in order for me to get to where I am now and not every day is as good as that day was but I have been having more good than bad days lately. It WAS a good day, until I snapped. A supervisor at work, whom I don't always agree with, made a stupid decision (in my opinion) and I lost it. Lost it the way I lose it on Jeff when I feel like things are spiralling out of control. Lost it like I was falling and had nothing else left to grab onto. Lost it like I so often wanted to lose it when everything was going wrong but I felt like I couldn't because I had to be the strong one. I don't know where it came from and it scared me to think thats whats inside of me. I have been struggling for a very long time and even though therapy helps, I still feel so raw and damaged inside. Another contribution to the situation could have been that I have had daily struggles with this supervisor and have kept my mouth shut about it all because I want to come across as a perfect employee. I held it all in until I snapped which is a whole other topic. The point is, I was so prepared to write about how little changes today can mean big things in the future and that even thought I still have my hard days, they are becoming easier to handle and further apart. I had no I idea I was about to be blindsided by my raw emotion thats been so desperate to get out. This has helped me to realize I can't cover up the hurt and damage I feel with eating healthy and working out. Thats not to say eating healthy and working out is a bad thing, its a lot better than the other ways I used to distract myself, but its just that, a distraction. I have so much joy for what my body can accomplish but I have come to realize I need to use it to explore those hard emotions instead of as a distraction from them. When I was going to school people would tell me how strong I am and that I doing an incredible thing by working full time and going to school full time while dealing with a sick husband and raising 2 kids. All I could think when people would praise me is, ya but I'm still fat. Ya I could do all these incredible things, but I ate like crap and I couldn't lose weight. I didn't realize it wasn't actually the weight that was causing me to not believe them but my deeper feelings of control, or lack thereof. It was my deeper feelings of not wanting to lose my husband and have to do this alone. It was my feelings that nothing I could do would make him better and for some reason that made me a failure. It is those deeper raw emotions that need to be addressed now along with eating healthy and moving my body. Its going to take a lot of small steps and I am going to trip along the way but I'm starting where I am.

Look back and never forget

I have always been quick to forget and have a way of thinking that what I am going through right now will always be. I remember after having my first son, he woke every 2 hours for the first 8 months of his life and I was exhausted. I would think that I was never going to be able to sleep again and I would never be able to take time for myself. Kids grow and eventually I learned what a short period of time that really was. I am grateful to have moved passed the baby stage but that lesson is what I hold to today. I often think, with Jeff, things will always be this way. I focus on the things we are missing out on because of the brain tumour and set aside the importance of the moments we have together. The progression of this cancer and the effects of treatment have been severe over the last 9 years which sometimes clouds my vision of what we still have. To be able to see past the fear of what is to come and focus on what is now has always been my biggest challenge. I like to plan and dream of the future and recently I didn’t know how a happy future could exist with the situation I was in. I often come to my mom with the worries and concerns that come with being the caregiver to someone with an acquired brain injury and it became clear (through her wise words of encouragement) that I needed to talk to a professional. When the hope of a happy future is clouded by the worries and concerns of today, it is so incredibly helpful to talk to someone who is able to clear away some of those concerns. It was interesting to see how a psychologist could tackle one by one every worry I would throw at her, nailing them to the wall to get a broader perspective. To change the way I look at everything I thought I knew and to help me take a step back and realize the exhaustion is only momentary. It is incredibly difficult and also freeing to learn about feeling your feelings, giving them the space they require and then categorize them properly. As I was talking to some dear friends of mine, they encouraged me to look back on what has already been written in this blog and remember what has already been felt. It was eye opening to take myself back to a time I thought would never end and realizing I had already forgotten. It gives me hope and encouragement knowing that one day I will be looking back on this day trying to remember where I have been. I have come to realize how incredibly important it is to remember the lessons from the past as I continue through this muddy journey and remember the exhaustion is only momentary.

unexpected emotions

Its been a couple of days since Jeff has been home from the Glenrose Rehabilitation hospital and my lack of celebratory posts on instagram and the blog might seem odd. Jeff spent 2 weeks at the Glenrose after a 40 day stay in the hospital. These 2 weeks were filled with many therapies with trained professionals who knew exactly what to work on with Jeff and how. His days were structured and he was progressing at a rapid rate. This is an exciting time and this progression should have been joyful. So why have I felt more anxious than ever? I have a few theories, all of which seem completely rational yet filled me with overwhelming guilt. Jeff being home means we lose the support and direction of the many professionals Jeff had working with him for the past 2 weeks. My responsibility would increase as I took over the role of therapist, and I honestly didn't want to lose the incredible support we had from so many friends and family members who wrote Jeff off as "better". Suleika Joauad put it nicely in her recent Ted talk when she said, "being cured is not where the work of healing ends, its where it begins." Although I don't view our situation from the lens of someone who has been "cured", I can bring the perspective of a caregiver to someone who admittedly doesn't remember the first 4 weeks of his recent hospitalization. Previous experiences taking jeff home after 3 brain surgeries, many rounds of chemotherapy and radiation, have taught me how true this statement could be. The first day having Jeff back was a difficult one for me full of complicated and unsure emotions. Guilt for not being ecstatic to have Jeff home and anxious for what the days ahead would look like. While everyone around me jumped for joy and celebrated the good news of Jeffs return, I wanted to hide or more accurately run away. I suspect I'm not the only one who feels guarded after such a trauma but I do know, so many of you out there put on the same mask I did. I hid my feeling down deep in a place where only I could see them so that others could have their happy ending. I nodded in agreement as acquaintances awed over the miracle that Jeff was and smiled while others told me what a relief it was to have Jeff home. It IS an incredible blessing to have Jeff home and I have been acutely aware of the many miracles that have happened along the way. Regardless, I would be doing a disservice to others in my same situation if I only wrote about the good. Over the last 2 months I have had the opportunity to talk to some truly insightful people who have blessed me with their perspective and the 2 greatest things I have taken away is 1) Its ok to not be ok and 2) Don't should on yourself and don't let others should on you. Ok ok, the second one wasn't from someone I talked to directly but from Nora Mcinerny in her podcast "Terrible, Thanks for asking." I realized that I was letting others should on me when I put on my mask and pretended to feel exactly how they thought I should feel. And, why, after all our family has been through, did I feel like I needed to be ok. My most meaningful moments these last 2 months are the times when I was able to be so incredibly vulnerable with friends who would open their arms and allow me to not be ok. Not allowing others to should on me is a work in progress but allowing myself to feel what I feel when I feel it has helped me to understand myself and work through those emotions more efficiently than I would have otherwise. Jeff has continued to progress over that past few days since he has been home and I look forward to continuing progression. Even though some days my be harder than others, I look forward to the day I can be as much of a support to my friends and family as they have been to me.

Recovery and new research

There have been so many updated in such a short period of time but I will try to touch base on all of them. The hospital journey jeff has been on, has been full of unanswered questions and trials as he has made his pushed through to recovery. Jeff was showing improvement everyday with little to no interventions from the drs and the general consensus was that these issues with temperature regulation, cognition, decreased heart rate, seizures, swallowing, balance, speech (did I miss any?) they are all due to delayed effects of the radiation. No one really knew what was going on but drs like to give answers even if those answers don’t totally make sense. I guess patients like to hear something other than some of the smartest people in the province have no clue what’s happening to you. We settled on not knowing and started focusing on the future. We requested Jeff to bee seen by the rehabilitation drs at the Glenrose and on Monday morning they gave us the good news that Jeff would make a good candidate to inpatient rehab lasting 3-4 weeks. I was so happy that Jeff was going to receive those supports and so happy I didn’t have to try and fight for rehabilitation from home. Monday was also Jeffs swallow test. When Jeff first came to the hospital I informed the drs of some previous scans he had had that showed signs of possible aspiration and because of Jeff’s weakness and because they still were unsure as to what was causing all of his symptoms, they didn’t allow him to eat. The days went on and things didn’t resolve so they gave him a feeding tube. It wasn’t until a few days later that they put a camera down his throat as a way of seeing if things in his throat were working properly and they also wanted to make sure there were no masses in this throat preventing food from going down. They found no masses but did notice that there was a delay in his food as he swallowed which put him at high risk for aspiration. They restricted all oral intake except ice chips. The last 4 weeks have been difficult for Jeff not being able to eat but on Monday they took him for fluoroscopy and were able to see a live x-ray of the food they gave him and how he swallowed. It was super interesting to watch and he did great on 90% of the exam. It wasn’t until they gave him a pill with water that they noticed the pill go down the right way but some of the water made its way down his trachea. This means that the speech pathologist allowed him to eat but with some restrictions. He can have easy to chew solids and thickened liquids. It was a joyous occasion to hear he could eat again and this morning he had waffles and an egg! This afternoon the feeding tube came out and now he’s on his own to get his nutrition in with meals. It’s a slow process as his stomach isn’t used to real food but its good to see him without that tube in his nose. Yesterday was also a big day in terms of diagnosis’s and the internal medicine team came to talk to us about the results of the PET scan they did last week. This scan showed signs of autoimmune encephalitis which is a disorder in which antibodies produced by our bodies to protect us turn and start attacking healthy cells (his brain). This disease is rare, hard to diagnose, and seriously cutting edge. It wasn’t even until about 10 years ago that is started showing up in the research. This is incredible and unnerving news. So happy to have a differential and so terrified for what this could mean for the future. The treatment they are going to try with Jeff is IVIG which is intravenous immune globulin. Google it. It’s super interesting. This IVIG was started today and will last for 5 days. When the 5 days are up, they will reassess his cognitive function and physical abilities and compare the results to the test they did today. We are very excited to see what this treatment could do and will patiently await the next 5 days.

Next steps

It’s been 2 and a half weeks since jeff came to Edmonton and was admitted to the hospital. Every day he gets stronger and every day the doctors do their rounds coming to tell us of the new test they thought to do because maybe this could be some obscure medical condition no one thought to test for before. Every day they come back to tell us the results were negative and they still have no answers for us. The seizure Jeff had at the beginning of his admission into the hospital was his lowest point here. He was unable to move his right side and would only wake when the doctors woke him for more assessments. He was given a tube from his nose to his stomach since he was at high risk for aspiration and he was closely monitored. Since the seizure, Jeff has regained streangth on this right side, he’s been able to walk with a walker 200 meters and they even tried a few steps without the walker today. He has been awake during the day reading National Geographic and playing games on his IPad. Jeffs mom and I have been taking turns being here at the hospital and being at home with the boys and every time I come back to see him, he is stronger and more alert. Jeff is still unable to eat since the last swallow test showed a delay in the process of swallowing with still keeps him at high risk for aspiration. He will have another swallow test early next week which will determine the next steps. If he passes, he will be gradually introduced to foods again and if he fails, he will be given a peg tube and get nutrients through that which is a tube in his abdomen going into his stomach. The last diagnostic test the doctors could think of is a PET scan. This will show any malignancies in his body that could support the neurologists differential diagnosis. At this point the neurologist is the only one to come up with a differential and he concluded this could be one of 2 things. This could be a delayed effect of the radiation Jeff received when he was having cancer treatments or this could be a paraneoplastic syndrome which is basically the body creating antibodies against a current malignancy and those antibodies are attacking not only the malignancy but also healthy central nervous system cells. Both of these conclusions would explain Jeff’s symptoms and both are equally as scary. We could be looking at a new baseline for Jeff. Looking too far into the future only brings anxiety and grief so our next step is to think about today.

Unknown

Jeffs journey over the past few month has been the epitome of a roller coaster ride. He's been tossed around and turned upside down. Since Jeff found out about the new lesion on his brain scan, he was put through a plethora of test trying to look for cancer markers or metastasis. An MRI of his spine, a CT of his chest abdomen and pelvis, a spinal tap and another MRI of his brain all showed no sign of metastasis, no cancer markers and the repeat brain MRI showed the lesion had actually shrink. It was a good day with celebration when we heard the good news but in the back of our heads we knew something else was going on. Jeff's speech was the first thing we noticed. His speech has been regressing in his ability to speak loud and get certain sounds out. Next we noticed his balance, he has been unsteady on his feet with some days being worse than others. Jeffs memory and comprehension seemed to be impacted as well. He has always had a more difficult time with memory since he was diagnosed with a brain tumour so changes are often difficult to spot. I mentioned concern to Jeffs oncologist in the middle of April and he stated he needed to collaborate with other specialists. About a week later, Jeffs symptoms progressed to diarrhea and vomiting. I suspected an infection since the oncologist did mention they may have seen aspiration on the chest CT but he didn't seem too concerned. I decided to take Jeff into the hospital to be sure we weren't missing something easily treatable. They did a chest x-ray and blood work but were unable to find anything conclusive. Jeff continued to be unsteady, increasing confusion, and speech became more of a problem. There were days when Jeff stayed in bed until 5pm and would only get up to get a drink, go to the bathroom and then back to bed. On Sunday April 28th I went to work leaving the boys with Jeff. He was able to get them up and ready for church but I heard report from friends that Jeff seemed very unsteady on his feet to the point of needing help to walk to the car. Friends of ours were so great to take Jeff home with them to keep and eye on him and the boys were able to spend the day with their cousins at Jeffs sisters house. Things sounded particularly bad and I asked Jeff to get a ride to Bonnyville where I was and I would take him to the emergency room. We were incredible blessed to have some of my favourite nurses working that day and Jeff had a room before he even arrived at the hospital. It was quickly determined Jeffs heart rate was alarmingly low and he was moved to a trauma room where they put him on a monitor and pushed the first dose of atropine to try and get his heart rate back up. The atropine worked for a few minuted but his heart rate quickly dropped again. The next steps were an urgent CT in cold lake and then a plane ride to Edmonton. The drs weren't sure what was causing these symptoms and the specialists wanted to see him right away. It was a long night with several specialists stopping by to see Jeff. He was seen by the emergency room dr, the internal medicine team, the cardiology team, and then the neurologist. Jeff was started on a broad spectrum antibiotic, magnesium, and was given hydrocortisone. Jeff was unable to maintain his own body temperature and was 29 degrees when he arrived at the hospital in Edmonton. They put him under a bear hugger to help maintain his body temp and started him on warm fluids. He stayed stable for the night and Monday afternoon, Jeffs mom and dad came. The drs were still unable to determine the cause of Jeffs symptoms. I took off that night to go to my last few days of school and Jeffs mom and dad stayed with him. Monday night, Jeff experienced a pause in his heart rate when they sat him up to  give him his medications. This was quickly reversed but Tuesday morning saw the progression of new challenges when Jeff had a seizure. He continues to recover from the seizure which could take a few days. Drs are continuing to run tests but have still been unable to determine anything conclusive.

3mm

It’s been 3 years since Jeff’s last chemo treatment and he has been having MRIs every 4 months since. Last time jeff saw the oncologist, I was hoping he would extend the MRIs to every 6 months since the results had been so positive for so long. I was even a little disappointed in October when he said he was going to schedule in 4 months again and then maybe after that he would switch to 6 months. Over the last year Jeff’s recovery has improved so much that he has been able to watch the kids while I work full time and he’s been taking on extra chores around the house. He has been making my hectic schedule an incredible amount easier as he has done  the dishes every night while I study for my primary care paramedic diploma. I have noticed over the last month or so that Jeff’s speech has been sounding increasingly mumbled and nasal. He’s had a lack of motivation but I easily brushed it off as a seasonal depression with it being the end of winter and so ferociously cold out. I was so wrapped up in school, working full time, Malcolm breaking his arm and then both the boys getting what we suspect was chicken pox, that I wasn’t even thinking about the appointment jeff had with his oncologist. They have become so routine at this point I just assumed he would say everything looks good and we would see him in 6 months. I got home on Friday evening after a week of being away at school and Jeff broke the bad news. Earlier that day he had seen the oncologist and found out that the tumour in his brain had grown. They found a 3mm sized lesion on the right side surrounded by an increased amount of fluid. I was able to talk to the dr on monday and got a little bit more information. The oncologist had a discussion with the neurosurgeons at the university of alberta hospital and they said, at this point, the new lesion is so small that surgery would be very difficult at this time. They would like to see an MRI 4-6 weeks after the most recent MRI so it sounds like that will be scheduled for 2-3 weeks from now. If the lesion has grown, the surgeons will have no choice but to do a surgery to obtain a biopsy and determine the most appropriate treatment. If the lesion has stayed the same size, they will continue to closley monitor Jeff. In the meantime, the oncologist would like to make sure there has not been a spread of cancer anywhere else in Jeffs body and has scheduled an MRI of his spine, a CT of his entire body, and a spinal tap. These will take place this week and next week and we will patiently await the results.

How it all started

I have had a few people ask me how we found out Jeff had a brain tumor in the beginning. I went back in the blog and realized I never wrote about before the diagnosis and partially wanted to write it for myself before I forget any more details. Jeff's friends from high school have said that Jeff always liked to tell the same stories over and over and they used to laugh at him (with him) about it. They wrote it off as one of his quirks. Right before jeff and I got married, he was going to university in lethbridge and he was having trouble with his vision so he got a prescription for glasses. Glasses weren't new to him as he wore them when he was younger but he hadn't needed them for his teen and young adult years. Soon after getting married, Jeff was really struggling with school. He worked hard and got extra help but his grades were poor. I noticed that he would completely forget things that should have been quite obviously memorable. One example, his debit card was connected to both our chequing and savings account. It cost $5 every time we used the debit card to take money out of the savings account so we were both clear that we should only use the chequing account for everyday purchases. One month Jeff used the savings account several times causing us over $100 in service fees. I freaked! I blew up at jeff about it (not my finest moment) and then called the bank and they actually refunded the service fees for the month. I actually think this was our first married fight (me freaking out more than anything). So, I thought it was over, Jeff knew never to make purchases with the savings account and we were happy again. The next month when I received that statement, the exact same thing had happened. Jeff was withdrawing from the savings account costing us hundreds of dollars in service fees. I took jeff to the bank and had them remove the account from his card so that couldn't happen again and started to wonder if something more was going on with him. Jeff had lots of memory issues that we shrugged off until I saw a commercial for adult ADD. I went online and took the test for him and it was like they were describing Jeff with every question. He made an appointment with a family doctor and they prescribed him an ADD medication.  While all of this was going on, Jeff's vision was changing frequently and had 3 different glasses prescriptions within a year. The ADD medication did help Jeff to focus in school more but his memory was still an issue. There are many examples I could talk about to explain the odd memory behaviours but in the end, I told Jeff he needed to go back to the doctor and request they do a ct to give us some reassurance that nothing was wrong with his brain. Throughout our marriage, I had told Jeff several times, I thought he had a brain tumour but never seriously considered it as a true possibility. It took multiple visits to the dr before he finally agreed to send jeff for a ct. This whole process of feeling that something might be wrong to coming to a diagnosis took about a year. In late March 2010, jeff had a ct and I had honestly forgot he was at the ct that day. He called me from the hospital and told me they wouldn’t let him leave without an MRI and he was not to drive himself home. They didn’t tell him what they had found but we knew it couldn’t be good. I got to the hospital just as Jeff got out of the MRI and the radiologist brought us back to look at the results. He found a massive tumour and was surprised to see how little deficits Jeff had in comparison to the tumour size. He was scheduled for surgery about 2 weeks later on April 1st 2010.

California!

One day in Walmart, the boys saw a map and HAD to have it. Usually, I don't give into their impulses because they want EVERYTHING but I figured it could be useful in teaching them geography and I hoped it could lead to discussion about different cultures and people around the world. I didn't expect the wanderlust a map on our wall would plant in me. Before the whole cancer thing and before having kids, I loved to travel. I had big goals and high hopes. I would search books and the internet looking for my next andventure. Seven years ago, priorities changed and the crazy adventures were forgotten in the basement somwhere. Together, Jeff and I were off on new adventures. Sleepless nights and doctors appointments were our new life. Of course, things are always changing and always will but for the last few months, ever since I put a map on out wall, I have found a spark. Thinking about new crazy andventures has been exciting. Archer looks at the map with so much ambition and I want to teach my boys that dreams are meant to be lived, not slept through. This winter was a perfect oppertunity for us to live a dream and California was at the top of the list. I heared so many amazing things about San Diego and the boys couldn't stop talking about Legoland. So, we took Archer out of school for 5 weeks and headed out on the ultimate California vacation. Here is a 5 minute snapshot into our adventure!

california vacation 2017

The appointments don't stop

Even thought it has been a year since chemo, I feel like the appointment will never really stop. We will always make trips to see specialists and over time, new doctors pop up. After meeting with the endocrinologist about getting jeff taken off of one of his medications, she felt the need to send him for an ultrasound of his testicals. The type of cancer Jeff was diagnosed with is  a germ cell cancer which means if it were to spread, the most likely place it would go is the reproductive organs. The endocrinologist quickly informed us that a 1cm mass was found during the ultrasound and we were refured to a Urologist. I feel like we received news that would devostate any ordinary person but it was just another phone call in our world of cancer. I did have a hard time thinking about the future, and again had to scale back. It was a long week before meeting with the urologist to see what he had to say. On November 24th we went into Edmonton and received news I didn't even think was a possibility. There are no indicators in Jeff's blood work of cancer, the mass is too small to feel, AND the blood flow to the mass is limited. These are all very good indications that this mass could be cystic and not cancer. I guess after 6 years I have come to expect the worst but it feels kind of nice to be wrong this time. Jeff still has another ultrasound this month to make sure nothing has changed in terms of size or density of the mass but we are crossing our fingers that everything will stay the same. Even after this scare, I do still stand behind what I said about cancer being nothing for us to fear. Although I had many questions about our future, I never once felt afraid that it could beat us. We got this. Now to make it through an MRI, neuro opthamologist, ultrasound, and urologist appointment before Christmas.

Fireproof

The last 6 years have been such a blur and sometimes I honestly don't even remember how truly hard it was until I go back and read things I have written. That's when I remember, it all comes rushing back to me and I put it away until the day I can read it without the memory stabbing me in the chest. But, reading it also helps me to see how far we have come. It makes me grateful for the pieces that are starting to fit back into place and for the first time in our cancer journey, I am checking cancer off the list of things we need to fear (which still includes bears, large dogs, and future daughter-in-laws). There is always a chance the cancer will return and spread but it doesn't have the same power over us that it used to. Looking back on how hard our journey was, even though it still hurts to remember, has given me the power and streangth to know we can do anything. I would never be so daring as to say I am happy to have gone through the events of the last 6 years, but I wouldn't change the things I have learned from it for the world. If I was given the opportunity to go back and take it all away, if it meant I would have to take what I learned away too, I wouldn't do it. (I had to hold my breath while I was writing that because I sure as hell wouldn't want to go through it again). But come on, I got to sing this song to Jeff the other day and actually mean it!  🎤Did you know, me and you, must be fireproof with all the hell that we've been through. 🎤. 

Recovery

Jeff was hit hard during his chemo journey and the results from recent scans weren't what we were hoping for. The size of Jeff's tumor hasn't changed since the day they started chemo. The team has consulted and more consultation needs to be done with Jeff's previous neurosurgeon but for the moment, no further treatment is required. They will closely monitor Jeff with MRIs every 3 months and keep his IV port in (just in case). The hope is that chemo has killed the tissue, even if it didn't shrink, and stopped the growth. Jeff is improving each week with some days better than others. He has been more awake the last few days and has even been able to watch the kids for a few hours in the evening so that I can get out.

Half way

Jeff started cycle 2 of treatments in Edmonton which gave us a little mini vacation! We got a hotel for 3 days and the kids and Jeff's family came down for a few days to spend time at the waterpark and play. Jeff of course had to be at chemo the whole day but he was able to find the energy to come out for dinner with the whole family.

On the second day of Jeff's 3 day chemo treatment, Jeff developed a tremor in this hand. It was significant enough that he wasn't able to eat fruit salad with a spoon and writing was difficult. The Drs were able to give him a medication which helped for a few days. On the Thursday after we got home, Jeff's medicine wasn't working and he was having a hard time sleeping because his tremoring hand would wake him up. We decided we better have a doctor look at him to make sure nothing big was happening. The doctor did a CT scan and found the results to be consistent will earlier scans and set our minds at ease. We assume the tremors are side effects of the chemo drugs he was given and hope they go away once chemo is finished. 

Jeff had his mid chemo MRI and met with the Doctor last week. It turns out, the cough he has had didn't come from the cold that was circling our house. One of the chemotherapy drugs Jeff had been receiving was actually causing damage in his lungs. The doctor immediately discontinued that specific drug from Jeff's chemo cycle meaning he no longer has to go once a week. Now, Jeff has 3 days of chemo at the beginning of his 21 day cycle and then nothing until the next cycle. That means I can count on one hand how many times we have to go back for chemo treatments! 

Jeff's MRI results come back consistent with earlier scans. His tumor hasn't shrunk the way we would have hoped but the doctors are hopeful they have stopped its growth. Jeff will have another MRI in March and will be followed closely after that. 

A cycle complete

We are waiting in bonnyville for the last day of Jeff's first cycle! The first cycle has been good so far. A few little bumps have come up along the way but nothing too crazy. Last week we found out Jeff's sodium was low, so the doctors added another medication to keep those levels up. This week, his neutrophil level is 0.0 which means he has no bacterial infection fighting ability at all and will be started on a prophylactic round of antibiotics. The port incision has healed nicely and his hair is still intact! Jeff's next round will start Monday next week and will take place in Edmonton. Only 2 more rounds to go. 

Feels good to be home

After the first night, the nurses and doctors were very helpful and got Jeff feeling better. He hasn't thrown up since the first night and he is feeling alright. He is incredibly tired and not super stable on his feet but looking forward to a weekend of relaxing and resting.

Getting poked for iv's and bloodwork never bothers Jeff but apparently he has super tricky veins. Day 1 he got poked 3 times and day 2 he got poked twice. That was when Jeff's nurse talked to the dr about getting a central line put in. Since Jeff's drugs go in intravenously and he has 5 days of chemo in a 21 day cycle, it would be hard on his veins to get poked 2 or 3 times every time. Things worked out in his favour and Jeff was able to get his central line put in before we came home. It is called a power port and everything is completely under his skin. He has a few staples right now and a lump just below his clavicle on the right side but it is a relief to know they won't have to go digging around in his arms any more. They will be able to use the port for his next treatment which will be in bonnyville! 

Chemo day one

Day one of chemo went well. We were not able to get into bonnyville for the start of treatment so we get to stay in Edmonton for a few days. The first day at the cross was uneventful. Jeff gets all his drug intravenous so it takes a few hours to get all the drugs into him. It's super unnerving to be in a big room where everyone is getting poison pumped into their veins in order to combat an even bigger poison. The doctors and nurses are amazing and the volunteers really do help to make things easier. But it doesn't change the fact that everywhere you look, people are fighting a hard battle. 

Jeff was feeling good after his first treatment. He has been drinking lots of water and they push lots of fluid in with the drugs so I expected him to be up a few times through the night to pee. I woke up a few times when he got up but didn't think much of it until at 5am when he told me he had been throwing up. It was a long night for him having to get up so much and throwing up him anti-nausea drugs this morning didn't help. Arriving at the cross this morning was like a big breath of fresh air. They immediately started him on intravenous anti-nausea meds and they are working on getting him some more meds for home. Right now, all is well. Jeff is relaxing and ready for day two. 

Chemotherapy

Since the completion of radiation in 2013 Jeff has been trying to find his new grove. He has been helping his dad as much as he can around the farm and with me going back to school, he has really stepped up with taking care of the kids as well as chores around the house. 

In September Jeff's MRI report came back with some bad news. There had been some growth of his tumor and the oncologist scheduled another MRI a few months later. Growth again, although it was minimal, meant Jeff needed to be to seen by the chemotherapy team. We met another new dr and went through the details. The next 9 - 12 weeks for Jeff look like they are going to be tough ones.  He will have 3 different types of chemotherapy drug being pumped into him in 3 or 4 , 21 day cycles. Days 1, 2, and 3 are chemo days as well as days 8 and 15. Then he gets to start again for another cycle. Hair will fall out, blood count will go down, and nausea will become a part of life. We really don't know what to expect or how Jeff will react to the drugs but hopes are high that this will be the end of his cancer chapter. 

After the good news

I wrote this about a year ago and didn't realize I never published it to the blog. It may have been that I felt it was too much of a downer or maybe I just really didn't want anyone to know I was struggling. After reading this a year later, I realize how far Jeff has come and how far our family has come. I still need to plea for strength everyday and the long term stress is starting to present itself physically. The battle continues but we have a village behind us. We have loving a caring friends who want to be there through the good and the bad. I can't even express how much love I have for all those I associate with. We have family that has been more than incredible our whole lives and we have a faith in Heavenly Father that provides us with a steady foundation. So without any further babble, the post that was written a year ago and never published......

 The battle after the good news has been at times harder than the radiation and treatment. The weeks and months during and after surgeries and radiation were filled with a whirlwind of appointments and schedules but for me, my emotions were dormant for the process. I have thought about it as being in survival mode. I have always been that way. In times of high stress, survival, or emengency situations, I shut down my emotional brain and get done what needs to be done. Im sure im not the only one. It works well for short term but last year I realized I couldnt live in survival mode long term. Some time earlier this year i realized that the stress was building up inside and one day put into words what I was feeling. If felt like I was driving in a snow storm. You know those horrable winter nights, the moon and stars are muffled by the raging blizzard and you can barley see the side of the road. When there are cars in front and behind you not daring to go over 50. Your knuckles white from gripping the stearing wheel. Thats how I felt. Every second of every day. The walls of my idea of a perfect life were crashing down on me and I was weak for not keeping it together. The last thing i wanted (and want) is for people to feel sorry for me. I want people to think I am strong and able, dominent and enduring. Turns out, I'm human. Turns out, im not immune to all the emotional and mental issues that accompany most high stress situations.

are 2 words really enough?

This has been something on my mind for at least a year and something I am so completely uncomfortable talking about that it has actually taken this long to write a post about it. I feel so inadequate at saying Thank You because I don’t feel like it could ever be enough. I can’t count the number of people that have helped Jeff and I through out our journey and I know I haven’t shown as much appreciation for it as I feel I should have. How do I pay someone back for his or her kind words that helped us make it through another day? How do I accept anonymous donations without being humbled to tears? How do I show to those that have offered support that their actions are truly the works of God in our lives?  I suck at saying thank you because I feel like it could never be enough. I went as far as to write notes to all of those who have made a difference in our lives and sadly most of you didn’t receive them because of my self-conscious thoughts that a note couldn’t possibly express the gratitude I felt for them. The truth is, I am grateful. Everyday I feel love and appreciation for each and every one of you who have offered any type of support. We have had an overwhelming amount of love flowing into our home over the last few years and especially over this last year. Our battle still continues as we move forward and find our new normal again but the strength and love in never ending. I hope everyone has a chance to read this and know that our gratitude is beyond words (or even a silly blog post). I want to say thank you to all of you and behind it, I want to you know that a small struggling family has made it through because of you.