It seems that I'm not as good at keeping up with this blog as I had originally thought I would be. I think I've just found other ways of dealing with everything that are a little more private and more suited to my personality. Typically, putting myself in the spotlight for any reason tends to make me cringe a bit, but I'm trying to do this for others out there who need something like this to help them through their own journeys. With that being said, I will try and do a better job of updating in the future!

So let me catch everyone up on the last month and a half...Chris is now moving towards round 5 of 6, which seems crazy to me because that means only two more treatments!!! There is still a chance he will need to undergo more chemo and maybe even radiation after he finishes all six rounds, but my hope is that by the beginning of October we will get the news that he is officially in remission. We've definitely fallen into a pretty regular pattern at this point, which has made things easier for me because, well, I'm a planner and I like to know what's coming! The first few days he's usually feeling pretty crappy--mostly tired and out of it and he tends to have a hard time remembering things I've told him recently (not sure if this is a new thing, but it's definitely heightened with chemo haha). Then again, I'm re-reading what I've written and this last round (#4) threw me for a loop because the day after chemo we cooked dinner together, he was super energetic and seemed more like "normal" Chris. So really, the pattern that has formed is more like a guide at this point and we still need to take it day by day.

Overall, this whole experience is NOTHING like I had imagined it would be...Chris should be the poster boy for how to live your life while you're fighting cancer because he has truly been kicking cancer's ass! It's funny because I never know what to expect when I get a reply to my daily "how are you feeling?" The answers range from 'dazed, confused, feeling weak' to 'I just rode my bike 25km or I just lifted weights for 30mins and then went for a run!' The latter tend to be the responses that occur most often in the three week cycles...Then there's me, who's sitting there going "I can't even ride 10km and I don't have cancer--dammit!" But in all seriousness, Chris has been pretty amazing through this whole thing and I know his positivity and overall outlook has and will help a lot of people going through their own cancer journeys.

As for me and my mental health, it's kind of a day to day thing. I'm feeling WAY more optimistic and sun-shiny about this experience than I was at the beginning. I still deal with bouts of anxiety and hypochondria and have encountered the occasional panic attack at night, but I'm learning better ways to cope with it. Number one thing I have learned (but still struggle to deal with) is NOT searching the internet medical sites for answers to possible medical issues. They only make things worse...fast forward to me Google searching 'stomach pain'...Let's just say that I'm a work in progress. I found music to be something that I definitely gravitate toward when I'm in need of something to take my mind off of things. I have a pretty eclectic musical taste but anything musical theatre (Wicked soundtrack, Rent soundtrack, Once soundtrack) seems to do the trick, that or my go to singer at the moment is Ingrid Michaelson. If the music alone doesn't calm me down, I usually bring my iPod into the kitchen and bake something. The combination of the two is a no-fail anxiety reducer!

One thing I don't think I've touched on at all is how Chris and my relationship has been through this whole experience. I mean this is one of those things in life that can 'make or break' a relationship, but lucky for us this has made us way more sure of us as a couple. We rarely argue and when we do, it's more of a difference in opinion (of which my opinion is always correct--right Chris :P).  But in all honesty, if the two of us can make it through a cancer battle and all the emotions and issues that have surrounded that, I'm pretty optimistic that we can work our way through anything!

I'll end this post with a video link to one of the songs that I continually put on repeat. It just so happens that the video itself advertises the "Stand Up 2 Cancer" charity, which you should all check out if you haven't heard of it. 

Thanks for reading!

Just Keep Swimming

I figured I ought to update my blog since its been a while and I finally have some things to post about. I guess I left off at "Chemo Round 1" so I'll start from there.

My Mom and I went for a weekend trip to Vancouver right after Chris finished his first round. As we were heading to the ferry he was texting me saying how awful he felt and that he had already called the nurses line to find out if this was normal. I felt immediately guilty that I was going on this fun trip while he was stuck lying on a couch feeling so sick. Out of all the advice I have been receiving from friends, family and strangers the common thread is to make sure I take time for myself. It's really hard to watch someone you love be so sick and hear about how bad they are feeling because it makes me feel really helpless. After he heard back from a nurse at the Cancer Clinic, that yes, being exhausted and weak is normal, I think it made him feel more at ease. Once I had talked myself into getting back in the mind-set of being excited for this trip, I felt myself enjoying it more. Mom and I went and saw Idina Menzel at the Centre for Performing Arts on Friday night and did some shopping on Robson on Saturday before catching a ferry home. I needed a mental break from everything and those two days allowed me to recharge.

About a week and a half after round 1, Chris started feeling a lot better as you can read on his blog. It made me feel a lot better about everything as well because he seemed to be back to his old self--a guy I hadn't seen since probably March! His cough was gone and I no longer had to worry about him blowing out my ear drum (although I realized I still visibly flinch when he takes a breath in to cough). Chris was back bike riding, running and lifting weights and the better he felt, the more at ease I felt.

Although I was feeling better about Chris' health, I feel I should talk about how much of a hypochondriac I have become in the last few weeks. I went to the doctor a few weeks ago because of a random mole on my toe that had visibly changed over the past year. I was referred to a dermatologist who was, in the kindest words possible, not very nice. One of the first things he said was "why didn't you come in sooner?" Well in my fragile mental state, something clicked and I jumped from 'weird looking mole' to 'holy crap it's melanoma' in the course of about .2 seconds. I was referred to a plastic surgeon to have it removed but until I had that appointment my mind just spun with all the possibilities (much like when Chris was pre-diagnosis). I became hyper aware of everything going on in my body from simple leg cramps and headaches to feeling my lymph nodes--you know, to make sure it hadn't spread there. The internet once again became my adversary and my mind was my own worst enemy. Even today, I'm still doing way too many checks of my neck to make sure nothing is swollen. I'm getting my mole removed tomorrow and I have a doctor's appointment coming up to talk about a better way to deal with all of my stress. I think it's just been an accumulation of sad things that has been building up in my head--my grandpa passing away in February, my best friends Mom passing away in April, Chris' cancer...too much all at once. My hope is I can find something that will release the stress in a more positive way, yoga, massages, a pint of Ben & Jerry's & Sleepless in Seattle, something that doesn't involve me worrying about non-existent issues with my own body.

Chris had his second round on Friday, in which I spent the 2 hours before I had to leave for work on the phone with various medical companies trying to get a VERY expensive drug covered for him. As I spurted off our situation to various representatives from the drug companies I found myself getting more and more worked up. "Please can you just pay for it...we have no money!" I did all the ground work and was so close to getting him into one program that would pay for what his personal coverage didn't, when one of the people I was talking to said he couldn't relay that information unless I had power of attorney or he was sitting  next to me. I was in the pharmacy while Chris was getting chemicals pumped into his body, so I had come to a standstill in all my progress. Chris was left to get the 3 questions answered by Pharmacare BC before officially being accepted into the program I was trying to get him into. Luckily, after he got the rest sorted out  he had the $1500 drug covered!

I think in my head I was kind of hoping Chris would remain feeling really good, even after he had round 2. Logically I knew this wouldn't happen, but it was a nice thought. I went over last night to just watch some tv and give him some company. We got in this argument over working, which was so stupid but it wound up escalating into this huge thing. Chris is pretty level-headed in arguments and they rarely last very long because of this. However, he was obviously having a bad day and he's back on Predisone (worst drug ever), which meant his mood was very volatile. I had a hard time not biting back because as I said, he's the level headed one, not me. I felt myself getting so frustrated because it was such a dumb thing to fight over and he kept repeating how grumpy I was making him. It got to the point where all I felt I could do was rub his back and not say anything. Not the ideal Saturday night, but I know that the person he was last night isn't who he normally is and I don't love him any less for it. I guess I just need to keep reminding myself that it's the drugs and sickness talking, not him.

I had lunch with a friend I've known since I was 5 yesterday and as we were catching up on each others lives I realized that I have officially transferred over into the adult world. I guess I've been there for a while, but I think I officially felt it yesterday. As V talked about becoming vice-president of her strata council and I rattled on about my issues with the drug company, I realized that being a grown-up kind of snuck up on me. *sigh* I guess it was bound to happen sooner or later. 

Anyway, that's all I've got for now. For anyone out there reading this that is going through something similar, I will say that the best thing you can do is just be there and do your best with the crap life has thrown at you.

And as Dory from Finding Nemo says, "just keep swimming!"




Until next time,
Kaitlin

Round One--Check!

Chris finished his first round of Chemo. today! A minor milestone, but a milestone nonetheless. Yesterday was pretty frustrating, as I'm sure you have read in his blog. As the "caregiver" it was equally as frustrating, however obviously for different reasons. I had taken the afternoon off of work, so having sat in the chair beside him for 5 hours knowing he had to come back tomorrow to try again, was just one of those things that had me gritting my teeth. I know that a lot of the reason they had him go home was because they didn't want one of the nurses to have to stay past 6/7 o'clock. Understandable, I guess...I know that it's a bit trying when a parent forgets their child at daycare and we have to entertain one kid when all we want to do is go home after a long day. Nevertheless, I really wish they had been able to get it done yesterday because as wonderful as they try to make the Chemo. room, it's still downright depressing--think of it as the exact opposite of Disneyland. It was just another thing we had to roll with I guess.

Yesterday was the first time I've encountered Chris with "Chemo-brain" as they like to call it. Well, it was either that or "boy-brain." We were told that the Rituximab treatment would be 5-8 hours, so obviously that meant we'd need to bring a lot to do and bring enough to eat. Me being, well...me, had a huge bag packed with books, magazines, an iPod and a ton of food--the epitome of organization. No surprise there, I live for planning and packing. When we got there, I asked Chris what he had brought, his answer? "Um...a couple of cinnamon buns, a Cliff bar and my DVD player." *sigh* I almost think it's more a boy thing than anything else haha. Luckily, I'm a good sharer :)  I think the weirdest part of the 5 hours was that Chris didn't really do anything. I told him that by just sitting there he was probably hyper-aware of all the side effects that were happening and that distracting himself might make things go faster and easier. However, we had just taken out the DVD player when we were told to "try again tomorrow."

Today went much smoother as I'm sure you have read in Chris' blog. He kicked Rituximab's butt today--flew through the bag! I went to the gym in the morning before heading up there and went from the Cancer Clinic to work. When I got there, Chris was on his laptop (yay, Wifi!) responding to everyone's kind messages. He told me that "the distraction of the laptop makes it so he's not focused on the side-effects," hmm...where have I heard that before? hahaha.

Chris' brother Jeff came to sit with him today as well, which was awesome because I had to leave for work before he was finished. I got a text soon after I started work saying that he was done and on his way home--much sooner than I thought! He said he went for a walk around the golf course and was feeling pretty good, not even coughing that much! I'm so happy that his cough and stomach have stopped bugging him, now his body can go towards fighting the cancer and not be so tired from the exertion of coughing so hard.

I'm off to Vancouver on Friday for a bit of a break from everything. My Mom and I are going to a concert and then are going to hit up Robson before heading home on Saturday. A short trip, but it'll be a nice temporary distraction.

Until next time,

Kaitlin

First Ride in an Ambulance...

Well tonight was eventful, to say the least. I just got home from a trip to the Emergency Room, via ambulance with Chris. We had just finished our usual Sunday night dinner (normal stuff--roast beef, potatoes, veggies), when he started complaining about a weird feeling in his jaw. He got up and stood there for a bit, before going to grab his phone to call his Mom. My parents and I could hear him talking to her in the back room and his voice sounded really strange, like he had a slur or a speech impediment. He came out and said that we should go to the emergency room, but all of his pills and the letter from the Cancer Agency (which we have to take every visit to Emerg.) were at his house. I was about to drive him while my Dad picked up all his medications when Chris' Mom called our house phone and told my Mom to call 9-11. I immediately felt like I was going to throw up or pass out. I mean, when his mom is worried, its got to be bad...she has unknowingly been my rock for the past couple months. Chris' mom is a paediatrician and is able to explain every medical thing that is happening and has eased many of my fears over the last while. So the fact that she was worried, had me very worried.

On the "cool" side of this (if there is one) I got to take my first ride in an ambulance. Unfortunately, it wasn't deemed a total emergency so there were no cool sirens or lights going--and they took the long way to the hospital! They got us in really fast, but Chris' jaw was so tight that he couldn't speak without being in pain so I had to answer all the questions. I talked to his mom before I got called in to be with Chris and she said that once she had calmed down she realized that it was a side-effect to one of the anti-nausea drugs he's on (one I cannot spell). That made me feel tremendously better because it was something they could fix relatively fast I figured.

When I got to the back room where Chris was, he was still having the same problems with his jaw, neck and back but he was talking to a doctor. My Dad referred to Chris as "Quasimodo" because he was all hunched over with his lower jaw jutting outwards. The doctor confirmed the fact that it was most likely a reaction to the medication and prescribed another drug to get rid of the "lock-jaw." The nurse gave him a shot in the arm and had him wait for it to kick in. It took about 20-30 minutes before he could notice a difference...it seemed to get better and then all of a sudden get worse again, but eventually he was just left with a tenseness in his body. Chris' lips would droop downward and you could see him physically tense every time he breathed in. It was really scary to watch.

They finally sent us on our way with a few more of the pills to fight whatever reaction he had. Unfortunately, he has to be up early tomorrow to get blood tests done before his Chemo. at noon tomorrow. My fingers are crossed that everything goes smoothly and there are no more visits to the Emergency any time soon!

Goodnight everyone,


Kaitlin

Our First Adventure to the Chemo Clinic

Well I'd say that our journey through lymphoma is finally off to a start after Chris' first visit to the Chemotherapy  Clinic. I took the afternoon off work so that I could sit through the first appointment with him, just to make sure he was okay. They were a bit behind which was a little frustrating, only because I think I was feeling a little anxious about how it was going to go. When we finally got into the room I felt a little overwhelmed seeing all these people hooked up to IV's--all at different stages in their treatments. Many of the people had lost all of their hair, some were wearing wigs and others were nearing the end of treatments with their hair starting to come back. It was an odd feeling, seeing all these people affected by the word CANCER.

Once they got Chris hooked up to his own IV, we were under way with this first round. The nurses there were so wonderful and I am grateful for all that they do to keep everyone's spirits up. Chris' nurse, Kate, went through all the drugs he was currently taking and set up a schedule for when to take each pill. They make the drug names so complicated, I think that by the end of all this Chris and I are going to sound like doctors.

The appointment itself was pretty uneventful, I read a bit and we watched a show on the DVD player...Chris made the nurse take our picture so he could document it for prosperities sake. I think for the biopsy pictures he said it was because he wanted to "show our kids one day." Unfortunately, we managed wear matching outfits to the clinic which set off a round of "how cutes" from the nurses and other patients. Pretty sure my face was bright red with mortification.

I've been feeling a lot more optimistic about the whole situation, maybe its been all the wonderful messages and good advice I've been getting from people. The support that we have been receiving from people is just amazing! I know it has helped me to gain a little perspective on our situation and feel a lot more hopeful.

I got a call from Chris a little while after I had dropped him off at home and he told me that our doctor had called to let him know the cancer is not in his bone marrow. I'm not going to lie, I did a happy dance before running down the hall with a big grin on my face to tell my parents. FINALLY, some hopeful news...let's keep it coming!!!

Monday we head back to the clinic for part B of round one. They have to drip this next drug in really slow because there are a lot of associated side-effects. My fingers are crossed that Chris doesn't have to endure anything too bad and that the 5 hours of sitting there are just as uneventful as Fridays.

Enjoy your weekends!

Kaitlin

Tornado of Emotions

Yesterday was a hard day--maybe one of the hardest yet. Chris went for his bone marrow biopsy and endoscopy, both falling on his 27th birthday. I went to pick him up in the morning and as he gets in the car he tells me to "step on it," he made a mistake and the appointment is at 10:30, not 10:45. Ugh, note to self make sure I write down all the appointment times too. What a way to start off an already stressful day! It took them a while to get to the actual biopsy; he had to get blood tests done first and then be briefed on the procedure. Chris brought his camera and wanted pictures of the whole thing--I was slightly apprehensive of this at first. I mean come on, really babe? You really need to remember this procedure? The lab technologist kept asking me if I was easily susceptible to fainting, but I reassured him that I have a pretty strong stomach. He continued to warn me that if I fainted I was going down and he wasn't going to catch me. The pathologist who did the actual test seemed pretty excited at the prospect of pictures for teaching purposes so I guess I was staying in the room as "photographer." I figured my role should be "hand-holder" but nope, I got to be right in there watching and photographing as they sucked bone marrow out of  my boyfriend. I'll admit--it was really cool. Not the whole, watching the guy I love be in pain, but the process was kind of awesome. The lab tech. showed me how he made the slides of his blood cells and I got to watch him cut the piece of bone marrow. Chris took it like a champ, I probably would have cried like a baby. 

We had a couple hours before the next procedure and I was continuing to try to get my afternoon shift at the daycare covered. In my head, I needed to be at the next appointment for my own sanity. Unfortunately, I just couldn't get it off and the guilt began to set in. I know I can't possibly be there for every appointment, but it made me feel like the worst person ever to not be there with Chris yesterday--especially on his birthday. I felt better when his friend offered to pick him up afterwards, but I still wish I could have been there for him. It turned out that they were running behind and he was just finishing when I got off work so I could pick him up after all. 

I'm not sure what I was expecting the results of the endoscopy to be. The pessimistic side of me figured it would be something bad (of course), but I also had this little glimmer of hope that it was just an ulcer. My pessimistic side sucks, because it was right. Cancer is in his stomach--fuck! So far, all the emotions I had been feeling were sadness and anxiety, but now I was pissed. I know it came across that I was mad at Chris and I feel really horrible that that's what it looked like. I was (and am) mad at the cancer. What did Chris do to deserve this? Life was just getting really good.

When I deal with things I tend to do it internally, at least at first. I don't want to talk, I don't want to be hugged and I don't want to hear that "it's going to be all right"...I just need time to process. It took me a good hour before I semi-snapped out of my funk. The rest of my funk eventually disappeared after a good cry through the season finale of Glee--hey, no judging. The rational part of me knows that I can't continue to be this anxious for the next however long, but it's hard when it's happening to someone you love so much and there's really nothing you can do about it. I can't control if and how the cancer spreads, I can't control if the medicine works and I can't control how Chris deals with it all. I can, however, control how I deal with it and that's something that is going to be a continual process. I've got to keep on my "bright and shiny" face especially in front of Chris because he doesn't need to see me scared or feel guilty that I'm so anxious. My "dark & twisty" side will come out at times, but I've got to do my best to keep it at bay. 

As I finish off this post, I should mention that one of the main reasons I have chosen to write about this experience is to help anyone who may find themselves in a similar situation. When I was looking for a blog from a perspective like mine, I couldn't really find anything recent or anything I could relate to. This blog is not going to be glamorous and may paint me as not a great person sometimes, but it's honest and real and I hope it helps someone who needs to feel comforted by the fact that they are not alone.

Until next time,

Kaitlin

The Big "C"

I'll start off by saying that this blog is meant to be a catharsis of sorts...something to help me deal with all the emotions I'm feeling surrounding my boyfriends fight with Non-Hodgkins Lymphoma. For more information from his perspective, check out Chris' blog. 

My journey as a "cancer caregiver" began about two months ago, at the end of March. I was in my second to last week of my final teaching practicum when I got the news that my boyfriend of almost 3 years had a large mass in his chest. At the time we didn't know anything other than the fact that a) it was big and b) it obviously wasn't supposed to be there. That day will forever be etched into my mind as it was technically the "start" of all that is to come and is where my story begins...

As I said, I had about a week and a half until I was finally finished my teaching degree. That week I had been super sick with some bug that was floating around the school. I wound up going home at lunch that Thursday because I was feeling so crappy. My boyfriend Chris texted me asking me to let him know when I was home because he was going to come over. He had been dealing with a persistent cough and had been home sick as well, but it still seemed kind of odd that he wanted to come over. I remember asking him if everything was all right and his reply of "hopefully" had me thinking that he was either going to do some really weird marriage proposal or he was going to tell me some really bad news. Unfortunately, it was the latter. When he got to my house I answered the door looking my absolute best (old pyjamas, a baggy sweatshirt and kleenex in hand) and I lead him to the couch. "Okay, what's up?" was the only thing I could get out. He looked at me and told me that he had gone into the clinic the previous night and the doctor there had told him some news--he had a large mass in his chest. My mind immediately went to, "it's cancer," but before the tears came he told me that we didn't know anything yet. I cried for what seemed like forever, with all the horrendous possibilities running through my head. I had just lost my Grandpa to cancer not even a month before and the one year anniversary of my uncle's death from brain cancer had just passed as well. I felt sick--sicker than I had felt before the news. We spent the remainder of the day together, but as he began telling others in my presence, my parents and his sister, it seemed to get harder to hear, not easier. 

The next month and half consisted of CT scans, X-rays, multiple blood tests and two different biopsy's. Although the original clinic doctor had mentioned Lymphoma, Chris' cardiothoracic surgeon seemed to be leaning towards a Germ Cell Tumour of sorts. For some reason, the Germ Cell tumour seemed like the better option to me. I spent that month and a half researching things that were most likely in no relation to whatever Chris wound up having. I poured hours of my days looking up different diseases and side effects of drugs he would probably never be on. Chris continued to tell me that it was useless to look up things because we had no idea what it was. Despite that constant "advice," it helped me feel more in control of the situation. I've always been a planner, someone who likes to know what is going to come, so the not knowing was driving me crazy. I should also mentioned that while I am very patient with small children, I am rarely patient with waiting. The fact that the whole diagnostic process was taking FOREVER was making me very frustrated and angry at the whole medical system, as unfair as that probably was. 

On May 11th, 2012 Chris was finally given the diagnosis of Mediastinal Large B-Cell Lymphoma--Cancer. I managed to hold it together the entire ride home as he relayed all the information (of which there was not much) to his parents on speaker-phone. All we knew was that he had been referred to the BC Cancer Agency and that there would be a bit more waiting between now and then. After I dropped Chris off, I broke down in the car...I had been doing that a lot over the past while, crying in the car or in places where nobody could hear or see me. I think that is the hardest part, I don't like showing how scared or upset this whole "journey" is making me but at the same time I feel like I'm going to fall apart at any second. I think for me, as the girlfriend of someone with cancer, the hardest part is trying to appear strong and optimistic and to hold in my own feelings about what could possibly happen. I'll admit, I've never been the 'eternal optimist,' in fact the people closest to me will probably say I'm the exact opposite. But that makes it hard when a positive attitude is so often linked with good outcomes, so I think that is one of the major things I'm going to need to work on over the next few months.

Chris' 27th birthday is tomorrow and we're celebrating by getting a bone marrow aspiration in the morning and capping the day off with an endoscopy...and maybe some cake later on. He starts Chemotherapy on Friday and will go through 6 rounds every 21 days. Chris is the eternal optimist--the characteristic I probably love most about him, so he keeps telling me we're going to have his birthday party the Saturday after his first treatment. My greatest hope right now, is that the stomach pain he has been having the past couple weeks is not the cancer spreading and that the bone marrow biopsy shows no sign of it spreading to his blood. My greatest fear right now is that the cancer has spread beyond the original tumour. 

I'll finish off this post by thanking those closest to me for being there for support and encouragement. Chris needs to focus on getting better and maintaining his positive outlook which means he needs to rely on me for support, not the other way around. So to those of you who have reached out and said you're thinking of us, thank you...I know I couldn't do this without you. Stay tuned for my next update and feel free to contact me if you want more information about anything. 

Thank you for reading!

Kaitlin