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.