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. 🎤.