Rituxan Maintenance Chemo, Peace and Joy

The title of this post may seem incongruous. How can a Rituxan Chemo treatment be in the same sentence as Peace and Joy? Joy? Really?! Yes, really!!

On Thursday, December 6, I had my 4th maintenance chemo treatment of Rituxan. This was the morning after a fun Christmas party that I went to with my former co-workers. It reminded me that I really can't wait to finish my sick leave and go back to work with these lovely, caring people! This time, my treatment was given using a new method which was developed through research. Improvements!! Next a cure?! Instead of receiving my Rituxan as an IV, it was given to me as a subcutaneous injection into my abdomen. Instead of sitting in a chemo lab chair for 3-4 hours, I was in the chair for 1 hour. I had to take my pre-meds of Benadryl, Dexamethasone and Tylenol 30 minutes before having the needle. It took 5 minutes to inject the Rituxan into me. This time, I was again facing the uncertainty of how I would react to the needle. Would I feel the flu like side effects immediately? Would it be a slower release of the Rituxan because it was not directly into my bloodstream through the IV? Would the flu-like side effects hit me much later? I could only settle into the seat of the figurative roller coaster and go for the ride. Immediately after the injection, I had a red rash, some swelling and itching at the injection site. The nurse, who was looking after me, kept a close eye on my rash. Because I had already had Benadryl, she wasn't too worried about the rash. She sent some benadryl pills home with me with instructions to put cold compresses on the injection site. The swelling, rash and itching disappeared within an hour after I returned home. My lower abdomen was tender and the muscles ached for the next 2 days. It felt similar to when I had my son delivered by C-section many years ago.

By Saturday, December 8, I was feeling well enough to go Christmas shopping in our downtown core. It was a cool day and overcast. I had my list of stores that I wanted to definitely step into to pick up some items as Christmas presents. I always enjoy my walk down the main street. I had a spring in my step. After just one block, unfortunately, the side effects of my Rituxan treatment hit me. I made a dash to the local Tim Hortons to use the washroom and then buy a tea biscuit. This stop was unplanned. Because the location of this particular Tim Hortons is near a hang out for the homeless, you have to approach the counter and have an employee buzz you into the washroom (unlock the door). Of course the counter was busy. This was not a time for me to publicly have to ask to use a washroom. Oh well.....Afterwards, I did buy a tea biscuit which was not planned. OK. "I'm not going to let this ruin my outing!" was my thought as I continued down the street. Except about 2 blocks later, what happens? I need to find another washroom. So I did discover a neat, little independent coffee shop and slipped inside very quickly. Ahhhh, good! No buzzer required! So after, I felt the need to buy something to support the coffee shop. Needless to say, I haven't actually bought any Christmas presents yet. So another unplanned purchase of a peppermint tea to help calm my insides. This time, I got it to go. The tea was so hot that I couldn't drink it. I walked a little slower down the street hoping that the tea would cool and my insides would cooperate. I saw the local Dollar Store and went inside to pick up some small gift items. But......what do I see to my awestruck surprise?! A sign on the door saying no food or drinks. My tea is still too hot to gulp down before going into the store. I am the type of person who doesn't like to break the rules. But I'm not going to just stand outside the doors like a homeless person and wait for my tea to cool. I took a deep breath and pushed open the door with tea in hand. Oh good!! There's another shopper inside the store with a Tim Hortons cup. I'm not the only rebel!! So I wander up and down the aisles. I picked up a few items and some inspiration on presents. By the time I was ready to head to the cashier to pay for my items, my tea was finished. I tucked the empty cup in my coat pocket while in the line up to pay for my purchases. I also realized that I forgot to bring my reusable bag. So I bought an extra large one for the few items I had. My thought was "I will use this one to carry all my purchases today." As I stepped back out onto the main street, I had another inspiration to support a local general store about half a block up the street. Lo and behold, but what should appear to my wandering eyes?! A trash can!! I put my tea cup in the garbage and continued on my way across the street. Remember I don't like to break the rules and lucky for me the light had just changed. As I strolled through the general store, I was picking up items to fill Christmas gift ideas for my list. Just as I got to the cash, OH NO!!! I need a washroom again! The ladies at the cash were so very nice. They took my impending purchases and directed me to an out-of-the-way washroom. Phew!! So now, hopefully, I can continue on with my Christmas shopping. I bought my items at the general store, placed them in my shopping bag and started off to one of my favourite stores downtown. Just as I was crossing the streets at the lights (remember I can't break the rules and jay walk), I heard a trumpeter start to play some Christmas music! This was perfect timing for me! You see, I was getting frustrated with my body as the Rituxan side effects were affecting me. I was starting to think, "I don't have time for this crap!!" (literally, ha ha). My stomach was aching, my insides were clenching and I was a long walk from the car. I did not have time to get "sick"! My daughter was coming home in a few days, we were getting ready to celebrate "Christmas Day" and her birthday. I did not have time to get sick! This was my only day to get the shopping done! And then I heard this beautiful music coming from the trumpet. As I waited for a street light to turn green so I could cross the street, I listened to the music. I stopped fretting. I breathed the cold air deep into my lungs several times and slowly. I took a very short amount of time to refocus my thoughts. I then actually enjoyed my brisk walk across the street while I listened to the trumpet notes echo through the downtown streets. I quickly found what I wanted in my favourite store and then went on to another store that I have never been in before. Several years ago, Hubby had bought me a box of "tea bags" but they were filled with spices and you used them with warmed red wine to make mulled red wine. I had long ago run out of them and I wanted to replenish my supply. This was a very popular and busy deli. So busy that if you were buying a sandwich, you had to take a number. I looked through their few shelves of items and I could not find the "tea bags". The cashier wasn't busy at that point because the deli customers were not finished getting their sandwiches. I jumped the line (oops....I broke the rules again!) and asked the cashier about the spice tea bags. She went right to the spot and there was only one box left. I quickly indicated that was what I was looking for and bought them. At this point, my shopping bag was now looking like a big green Santa Sack! I guess I was done for the day. This was good news because my body was lagging. It was sinking into the pit of tiredness that comes with the Rituxan. And...my insides were gurgling again. Time to walk very briskly back to my car which was several blocks away. About half way to my car, as I was dodging people strolling on the sidewalk, there was the trumpeter playing "O Holy Night"! This man had his trumpet case open and a sign propped against it. "All Donations to the Partner in Missions Food Bank". I had no money left. I had spent it all. I was disappointed and then thought, "I have a lot of heavy change in my change purse." I unzipped the change compartment of my wallet and dumped the whole thing into his trumpet case. I don't know how much money was actually there. I do know there were a lot of quarters, dimes and nickels. A lady passing by, said to me, "That was so nice of you! Thank you!" She then stopped and put in a couple of five dollar bills. I hurried on my way knowing that my little window of time of feeling well enough to be out was quickly closing.

Sure enough, my body sunk into a terrible bout of side of effects. For the next few days, I was cold. I was hot. I was exhausted. My insides were in turmoil. While staying at home and resting, I did get some of the presents wrapped and under the tree. I took advantage of being at home, and I made my daughter's layered birthday cake in between bouts of running to the washroom. I did take an hour on the Monday evening to go grocery shopping with Hubby. Again, this is a store that I regularly visit and I knew where the public washroom was if needed. I was trying to be positive and hope that I could have one outing without issue. I was disappointed in that hope but at least we got the groceries done. It exhausted me. As I rode the roller coast of side effects, I lit my Advent candles and reflected on Hope and Peace. My hope was the side effects wouldn't last too long. I did manage to find peace of mind as I sat, rested and reflected. As the candles are lit, they reflect off a beautiful table decoration that I just plopped beside the Advent wreath this year. I didn't know where else to place this decoration a few weeks ago, so it just happened to be placed on the coffee table beside the Advent wreath. This decoration is of Mary sitting, Joseph standing beside her and an angel holding the Baby Jesus. As the Advent candles are lit, they reflect and almost spotlight this precious decoration. This year, it has been helping to give me Peace.

By Tuesday, I was feeling rested enough to make the 2 hour drive to my daughter's apartment, pick her up and bring her back home (another 2 hour drive). We stopped partway to get some gas and dinner. The only food option was McDonalds. It had been 7 hours since I had eaten anything. The fact that my stomach was empty, made my insides gurgle more. Ever since my stem cell transplant last year, I often feel ill after eating french fries. Despite this, I ordered french fries with my meal because I was hungry. Mistake!!! By the time my daughter and I returned home, I was not feeling well at all! I went straight to bed and did not have a good night's rest. My insides were a mess! I finally fell asleep around 4 a.m. on Wednesday morning. This was the day that we were celebrating my daughter's birthday and "Christmas Day". I awoke feeling just OK. Hubby took this one day off as a vacation day. The three of us enjoyed a wonderful "Christmas" morning but my insides were griping. My body was not happy. I had an internal conversation with myself. "You can either be miserable and wallow which could be warranted. Or you could suck it up, enjoy your brief time with your daughter and Hubby and move forward as best as you can." So I sucked it up. I didn't complain. I didn't dwell on how crappy I felt. We fully celebrated my daughter's birthday lunch with laughter, chatter, stories and memories. As I was cleaning up from lunch and preparing the kitchen for the stuffing of the turkey, my insides started cramping. Thank goodness Hubby is a wonderful cook and knows his way around the kitchen. While my stomach was cramping, I chopped up the onions, celery and herbs for the stuffing. I then handed the kitchen to Hubby who prepared the turkey and put it in the oven. Meanwhile, I spent my time in our washroom. I told myself, "OK let's get this over with. We have company coming for dinner." My Hubby's cousin is currently out of town and we invited her husband to come for a turkey dinner with all the fixings. I spent the rest of the afternoon in and out of the washroom. At one point, I heard Hubby announce that our guest had just pulled in the driveway. Oh no....I was in dire straits! I prayed, "Please let me get through this time with the company in the house. Please let me not have to spend my time in the washroom like this afternoon. Please, please, please.....don't let me ruin Christmas!" At that point, I was desperate. I wasn't feeling well. I was trying to hide it from my daughter and Hubby. I didn't want this stupid treatment and side effects to steal the day from us. This was a time where I was angry with having lymphoma, the treatment and the side effects! My prayer was answered. Although my stomach was still not happy, I was able to be with everyone and eat a little bit of dinner. As soon as our company left, I was running for the washroom. Hubby now recognized something wasn't right. I went to bed.

I rested most of Thursday and spent time with my daughter. She indicated that wanted to go home Thursday evening instead of waiting until Friday morning. Well, that could work for us. Hubby and I could both go on the trip to return our daughter to her home. I was very tired but my body had stopped griping. I went for the 4 hour ride. This was perhaps a mistake on my part. After dropping our daughter off, we got partway home and filled up with gas. After getting back onto the highway, I started to feel very hot and flushed. Next thing, my stomach was feeling queasy. I had to ask Hubby to stop the car at the side of the 401. He wanted to be safe and started up the ramp onto the 1000 Island Parkway. I now had no more time. "Stop, Stop, Stop!!!" I got the door open just in time. We continued on our way home via the 1000 Island Parkway. Hubby's thought was there was less traffic and it was safer if we had to stop again. Once we hit the end of "The Parkway", I was feeling a little better so we got back on the 401 instead of taking a secondary highway. I just wanted to get home as fast as we could. As we hit the outskirts of our city, my stomach started to uncomfortably roll. I spoke to myself, "Just keep it down, just keep it down. We're almost home. We're almost home." Nope. Couldn't make it. "Pull over, pull over!!", I said with panic in my voice. "We're almost home.", said Hubby in a comforting voice. "Not going to make it.", I groaned. He pulled over in an area where shoulder was narrowing. Thank goodness. I got the door open just in time. When we got home that long Thursday night, I took an anti-nausea pill left over from last winter. It helped. I went to bed and I slept all Thursday night, most of Friday, all Friday night and woke up feeling better on Saturday.

The side effects of this round of Rituxan seemed to be worse than before. I don't know if it is because it was a slower release of the drug because it was a subcutaneous injection. I just know that this time was a rougher go for me. I will have to talk with my oncologist and really weigh the pros and cons of the subcutaneous needle vs. an IV injection. Despite the rough week, I still had moments of Peace. I had true moments of Joy when my daughter was home. We laughed. We had deep love. I truly did feel deep joy within even as my body struggled. I have had a good weekend. I turned the corner and returned to good health on Saturday. Hubby and I ran some errands. We stopped by our favourite apiary to buy some products from our friends. This became an impromptu friendly gathering and was filled with joy, love, friendship and good conversation.

The side effects did cast a small dark pall over our "Christmas" but with some prayer, self-talk and family support, we had a great time. I didn't dwell in the "bad". I didn't have a pity party. I lived through the darkness and found light amidst it. My favourite Christmas movie has always been "How the Grinch Stole Christmas". In it, the Grinch says "Maybe Christmas doesn't come from a store. Maybe Christmas, perhaps.....means a little bit more?" I truly believe that the "Christmas mood" is found in all the intangibles. It's not found in the decorations or the hustle and bustle. For me, this is a real time of Advent....HOPE, PEACE and JOY.