Post Maintenance Treatment....Onwards and Upwards

Well, I had my Rituxan maintenance treatment last Thursday, May 23. I am glad that the side effects seem to be finished for the most part. Thursday, I was completely out of it due to the benadryl that I have to take to counteract any allergic reactions. It wipes me out. Hubby can tell when it takes effect as my eyes go glazed and no one seems to be home mentally.

Friday morning arrived and the bowels were affected by the Rituxan. I stayed close to home and rested as we were going to very good friends for dinner. The pounding headache that comes with Rituxan inserted itself into my brain. I was taking extra strength tylenol at regular intervals to keep it bearable. My day was spent reading light novels and surfing the internet. When the side effects hit, all I can do is ride the wave until it passes. I had a lovely time with our friends on Friday night but tired easily and it was an early night.

Saturday, two days after the treatment, I was hit with nausea and lack of appetite. The bowels were a little better which was a relief (pardon the pun). Again, Saturday was spent doing "nothing" although I did work on my daughter's afghan between reading and texting with my brother in another city. He doesn't have access to much internet and so he was not aware of the wonderful news I had received at my check up on Wednesday. The headaches continued throughout Saturday and it was an early night again. I find that getting enough sleep helps lessen the side effects. I was hoping on Saturday night that I could make it to church on Sunday morning as I wanted to sing in the choir. We have an interim organist/choir director who I have really enjoyed working with and Sunday was the last day the choir would be singing until September. So off to bed I went with hopes for the next morning.

Unfortunately, Saturday night I didn't sleep well as my body was restless. Sunday morning came and my nausea, headaches and bowels were still an issue. I wasn't very hungry and it was due to the nausea. I sent off an early morning email to the organist to let her know that my body was not cooperating with my mental wishes. I rested on the couch and read my current novel as well as worked on the afghan again. By late morning, Hubby wanted to get me out of the house for a drive. I agreed.

I took more extra-strength tylenol and got cleaned up. May be that would help me feel better. It really didn't but I did need a change of scenery. Hubby suggested going downtown to watch a baseball game. Unfortunately, my headache was pounding and the thought of sitting amongst a cheering or yelling crowd made me cringe. I love watching baseball so you know how awful I was feeling to say "No, I don't want to do that." Hubby was very good and we went for a drive along Lake Ontario's shoreline. The water level was high. I enjoyed the warmth of the sun on my body in the car as well as the sparkling water that looked like little diamonds as the sun glistened off the blue water. What a lovely drive it was. I noticed that not many fields have been planted yet due to the wet ground. Some fields were planted but you could see where the tractors had sunk and made deep ruts in the field. I enjoyed the drive but tired quickly and was ready to return home. Hubby made a lovely meal but I wasn't hungry although I did eat a little bit. By the end of the day, I was ready for all the side effects to be finished. I was tired of riding this roller coaster and being in the deep valley. As I went to bed on Sunday night, I hoped that Monday would be better.

I slept much better and.....Hubby and I both slept in. The alarm had been shut off for the weekend and we forgot to reset it. Hubby had just enough time for breakfast and dash out the door to work. I continued to be exhausted throughout the day but at least the headache, bowels and nausea had calmed down considerably. I was just wiped. Monday was a sunny and warm day so I took advantage of it and did a couple loads of laundry and hung them on the line to dry outside. I love the smell of wind blown clean laundry. That was enough for me. I dressed in my sun protective pants and shirt. I put on my hat and I sat out on the patio with my book. I listened to the birds singing away, the bumble bees buzzing lazily around the flowers and read my book. It was a lovely day even though I was very tired. I took advantage of feeling a little better and tried a new recipe for dinner. It was Trinidad Chicken Pelau. I had cut it out of our local newspaper back in 2014 (that's the date on the paper). I also made Jamaican Carrots which I've made before. I got that recipe from a Carribean Night which Hubby and I attended several years ago. It was an evening of Carribean food, music and fellowship in an effort to teach and integrate the two cultures in our city. It was a very memorable evening and the recipes for the food were available for those who wanted them. I like trying new things and different ethnic foods so, of course, I picked up the recipes. I digress from my dinner though. The meal I made on Monday night was really, really good. It's not often that I love my own food. Food always tastes better when someone else makes it. This time, I loved the meal! I will definitely be making it again. But....preparing and making the meal exhausted me even more. So it was an early night again.

Yesterday, Tuesday, May 28, I awoke feeling normal!!!! Praise be!! The side effects seem to have abated. I'm moving onwards and upwards from the treatment now. It was a rainy, damp day here so I decided to tackle cleaning out a small crawlspace (we have another bigger crawlspace) in the house. I also put polishing some old furniture and vacuuming on my to-do list. I started with the crawlspace because there's an upcoming reunion that Hubby wants to go to and he would like to find his collection of pics and stuff from that time period. While going through the crawlspace, I decided to do a major purge of "stuff". It took me most of the day to finish this job. At the end of it, I was dirty and dusty but there were 3 bags of things to donate to the second hand store. Hubby and my children received multiple texts with pictures of stuff as I requested a yes or no to keeping. It was late afternoon when I finished this big job. Unfortunately, I didn't find Hubby's mementos. They must be in the bigger crawlspace. He keeps that one organized so it will be up to him to find them now. I rested for about an hour and then I tackled the old furniture. One is an old shipping trunk that belonged to my grandmother but maybe even came to her from her parents. I've used it for storage of kids' things over the years and when I started reclaiming their bedrooms in January, I started to use it for storing blankets and afghans for winter use. It looks good in Son's "new" room so I decided to use the furniture polish from Sticky Forks Apiary to bring the trunk back to life. As I cleaned and polished it, I was very pleased with what I saw. Hubby arrived home from work (time had passed quickly!) and saw the partially polished trunk. He was amazed at how well it looked. I stopped and reheated the leftovers from Monday for dinner. After dinner, Hubby continued to paint my laundry room in the basement while I continued to polish the trunk. I'm really pleased with how it looks but it has been neglected for so long that I'm going to let it soak in and then do it again next week. After I was done the trunk, I looked at the battered bookshelf that has held my books and then Son's books over the years. I bought this bookshelf 30 years ago at an auction and it was battered then. I cleaned the empty bookshelf and then went at it with the furniture polish. When I finished, the bookshelf gleamed and shone like new! All the scratches were magically gone! Oh but how my hands and wrists ached! Hubby was still painting and so I dug out the vacuum and finished my to-do list. My energy was sapped but I felt so satisfied. It was a full filling day but I was tired. I finished my day with spending time on the couch with Hubby. But then the phone rang just as I was to head to bed. I had a short visit with my mom and then had to politely end the call. I was yawning so much I could hardly carry on a conversation and my mind was turning to mush. Off to bed I went.

Today is supposed to be a sunny and warm day. Two loads of laundry have been done and will be hanging on the line after I finish this post. I'm really tired again today and I believe it is because I did too much yesterday. But I still want to play in my gardens today too. Oh well....onwards and upwards! Life is for living. I can always sleep later.

Fantastic Update!!!!

On Monday, May 20, Hubby and I took a short ride, due to the cold and windy conditions, on the Big Wing. We went east to Rockport and enjoyed some time looking out over the St. Lawrence River, listening to birds and enjoying the sunshine. It was very windy and you could see white caps out on the river. The water level is high and the Rockport Boat Lines had skids holding up a wooden walkway so customers could make it onto the tour boat without getting their feet wet. The river was up over the permanent dock. We saw swans, warblers, and ducks. The swans and ducks were sheltering near the shoreline due to the rough water.

My birthday was on May 21. It was a cool but sunny day and I enjoyed playing in the garden which translates to continuing the job of digging and pulling the roots of an aggressive plant that is the bane of my garden. I did that until I disturbed some bumble bees. So I left and moved to another part of the yard. I also bought myself some sun protective shirts and pants as I am not supposed to get any sun exposure anymore. Due to the chemo over the years, I am at a high risk of a secondary cancer which is often skin cancer. Being fair, I was already at a high risk. I've been working in the yard with long sleeves and pants. My current gardening clothes kept me safe but they were heavy weight and caused me to overheat. The new sun protective clothing is more light weight and will be better. Hubby took me out for dinner again on my birthday to my favourite Indian restaurant, Darbar. This was to celebrate my birthday but also like a "last supper" as I went for my 6th Rituxan maintenance treatment on Thursday.

So as per usual, on Wednesday, May 22, I saw my oncologist for my check up before having the treatment on Thursday. The last time I was at the cancer clinic was in March when I was given the results from a full CT scan from my throat to my pelvis. It was a resident doctor (student) that gave me the results and she didn't let me ask questions. She just said that there was a new spot on my lung and so they would do another chest CT scan in 3 months. So I saw my regular oncologist on Wednesday and I asked him if there was any difference in my abdominal tumours from last June. His report was that all the abdominal tumours had shrunk to normal size lymph nodes!!!! I was so ecstatic, I started clapping and shrieking Woo Hoo!!! My doctor smiled and said that I still need to have the chest CT scan done in June but things are looking positive. We're cautiously optimistic that I'm in partial remission if not full remission! I'm going with the assumption that the spot on my left lung was from my cold/infection I had at the time of the CT scan in March. That scan took place on March 7 and I didn't start any antibiotics until March 14. So I have a chest CT scan on June 10. I only have 2 more Rituxan maintenance treatments left to go.

Yesterday, I had my 6th Rituxan maintenance treatment. They always give me benadryl to counteract any allergic reactions I may have. It knocks me out. So yesterday was spent sleeping and resting. That also meant that I didn't sleep very well last night because I was "rested out". Oh well. This morning the side effects of the Rituxan treatment are kicking in. These include tiredness and loose bowels. Hubby and I are going to our friends' place for dinner tonight. I am very comfortable with them and they understand the process I go through. I'm hoping that if I keep rested and quiet today, my body will settle down.

With all the good news from my check up this week, it makes all the rest of this treatment and side effects worth it. The Rituxan maintenance treatment is what has continued to shrink my tumours in my abdomen. I am so very thankful for all the research that continues to be made in treating lymphoma. I'm so very blessed to be surrounded by family and friends who pray on a regular basis for me. I love my God who has provided the inspired scientists with their knowledge and quest for new treatments. Life is grand. It is a roller coaster. I'm currently near the top of a hill on the ride of life. I'm going to enjoy as I do every day.

Good Times!

Last Sunday (May 5), Hubby and I decided to get out on The Big Wing for the first time this year. It was a sunny, warm day. As I sit on the back, I often have the wind buffeting my legs and hips while we ride. Hubby is somewhat more protected as he has wind flaps to adjust and keep himself warmer. So at this time of year when the wind still has a chill to it, I wear layers on my legs. On Sunday, I decided to go with only 2 layers rather than the 3 layers that I sometimes wear on the colder days. Off we went. I love looking around at nature as we ride out of the city. This particular ride, we went north and then took the Westport Road which is a lovely winding road with lakes on either side and sometimes even a waterfall rushing merrily and noisily down the rock cut in the early Spring. This particular day, there was no waterfall but the scenery was relaxing and enjoyable. The leaves were not evident on the trees yet and this allowed me to see a big porcupine sitting in the tree top to the left of the road. There was still winter grit on the road and this makes for a dangerous ride as the bike wants to skid out from under the riders. That combined with the "road snakes" which are tar patch lines makes for a perilous ride. There were a couple of times I could feel the bike sliding as we went around hairpin turns in the road. Regardless of the fear in me at that point, I fully enjoyed our ride. We went through Wesport and then headed south on our way to an open house at Sticky Forks Apiary. On the road south, I saw a lovely loon gliding silently across the lake. My thought was, "There's the loon aka me" and I had a silent chuckle at my own expense. Then there was a turkey hen on our right quickly running away from the road. Again, my thought was, "There's a turkey aka Hubby" and again, I silently chuckled. As we continued on the road south, on our right was a swampy bay. Sticking out of the water was a log with six small turtles sunning themselves. All the nature is a balm to my soul regardless of how tired I am.

We meandered our way over to the open house and saw the bees, chickens and honey products that were on display and available to buy. I have my favourite products and I will make my way out to Sticky Forks Apiary in a few weeks to replenish my favourites. Of course, I must admit that the owners are friends of our's. We arrived just towards the end of the open house. My friend pulled me aside and wondered what I had planned for dinner. For Hubby and I, dinner was going to be leftovers from the night before. We all decided to be spontaneous and enjoy a relaxing evening together. We went out for dinner and then our friends came back to our place to enjoy the patio before it got too cold. What a lovely day it was!

The rest of the week has been really good too! I'm back to singing again and have rejoined my church choir. It is a challenge for me to go out in the evening midweek for choir practise. I am finding that it takes a toll on me and I am exhausted for a few days afterwards. However, the upside to this is I am reconnecting with the choir members and I am fully enjoying the rehearsals and singing in the choir. This activity continues to be dependent on how I feel. For now I'm in the midst of good times.

However, yesterday I received a notice of another chest CT scan as a follow up to one I had done in March. The one in March showed something in my lung. At the time, I had that terrible sinus and chest cold which required antibiotics. My doctor and I assumed the spot in the CT scan in March was due to the cold. But to err on the side of caution and be diligent in observing what's going on with me, I have to go for another CT scan in June so that they can be compared. It's amazing how my mind can play havoc with me. I'm having a great week and then the anxiety hits again. I am refusing to dwell in the dark place of anxiety and fear. But......if the spot is still there then that is not a good sign. I also go in for my next maintenance rituxan chemo treatment on May 23. I often experience anxiety leading up to those treatments. I'm glad the weather is warming up and I can "play" outside in my garden. It helps calm my soul. Of course, with the warmer weather, I will also be enjoying more outings with Hubby on The Big Wing.

For now, our home is partway through its refreshing renovated updates. I am excited to see it completed although that won't be until mid June. That's fine. It will give me something to focus on and get me through the next few weeks. In the meantime, Hubby and I are enjoying dinners and good times with friends and family. As the weather warms up, I will be able to spend time sitting on my patio while I watch and listen to the birds. Good times!!

Feeling Good......and Waiting For "The Bad"

I don't know if it is the residual effects of a crappy February or even the residual effects of the last 2 years but if I'm absolutely, bare-bones honest with myself, then I have been struggling to keep positive, happy and peace-filled. Perhaps I'm a bit down in the dumps because of the grey, cold, rainy weather we've been having. Whatever the reason, I find myself looking to keep busy and keep my mind occupied so I don't think too much. When I have quiet moments, I start to worry about when is the lymphoma going to return. I don't want to think this way but the reality is it will return. We just don't know when. It could be in a month, in several months, perhaps even years before it returns. It is like having a guillotine hanging over your head and you don't know when it is going to fall.

So how do I cope? How do I keep from falling into a pit of despair? I keep busy. Hubby and I have decided to reclaim our house and update it. So, as I've mentioned in previous posts, I have learned to mud and sand the drywall. All the patches are done that we are doing ourselves. Our son's bedroom has been painted. The only full bathroom has been painted. The hallway and the dining room have been painted. Next our daughter's room is being fixed up by a professional. Hubby and I felt it was beyond what our limited skills could fix. At the same time, the professional is going to finish my partially finished laundry room. New flooring is going to be put down in June. Again, we are investing in having professionals do the flooring. This project has been good to keep me physically and mentally busy. I've emptied out closets, cabinets and boxed up the belongings so that the walls could be painted and in preparation for the floors to be done. You see, I have another Rituxan treatment happening on May 23. I never know how my body is going to react and so I want to have everything prepared by then.

The last couple of days, I have been trying to find more things to do to keep busy. When I stop, my mind plays with me. All the "what ifs" that I am trying to outrun, catch up to me and play havoc with my emotional well-being. I feel good and healthy as I've had the energy to do all this prep work. I still manage my energy as I rest when needed. But the down side is that when I rest, the "what ifs" are always there. This is when I rely on some mental fortitude and strength to remind myself that physically, I'm feeling good. We did have a couple of warm days early in the week and I was out gently playing in my flowerbeds by pulling up some of the invasive weeds and plants. The ground is still to cold to dig deep but it was satisfying to be outside.

I know that I am dealing with some anxiety regarding the lymphoma because I lose concentration and I'm having some insomnia issues. I have a tendency to want to tighten up the control of things around me when I get anxious. I have always been aware that this is not a healthy way to deal with anxiety but it's there. So amidst the chaos of renovations, I'm anxious about keeping the house clean. The anxiety mounts as I am surrounded by the chaos of boxes, dust and seemingly endless disruption. This is when I stop, breathe deeply and try to centre myself with calm. If that doesn't work, I'm back to vacuuming, dusting and going through drawers and closets and purging "stuff".

I am feeling good and know that some sore muscles are a good sign that I'm getting back into shape. I look forward to working in the garden and then sitting on my patio and enjoying nature. As I contemplate where all my anxiety is coming from, I realize that it may also be attributed to the upcoming check up and treatment. As I write this, I also realize that it was May 16, 2012 that I was officially declared in remission from my first round with lymphoma. Am I officially in remission now? I don't really know. I don't think so as I believe there are still some spots in my abdomen but they are slow growing which is normal with follicular lymphoma. Wednesday was not a good day for me this week. I could feel myself falling into the doldrums. Yesterday I kept busy and so it didn't really affect me too much......although I didn't sleep well last night. The brain worried and wouldn't shut down. I'm hoping that by thinking and writing in the blog today will help me deal with my concerns and move on.

The bottom line is that I would love to be fully cured. I would love to know that the lymphoma is never, ever returning. That's not the reality though and most of the time I can seize my days and wring the most joy out of them. It's just been tough lately. Again, honestly, the dark cloud of worry and lymphoma seems to have been more prevalent since February. So again, how much of it is actually worrying about my health or dealing with grief and loss? I haven't been able to figure that out. It is all woven together to create a rope that is pulling me down. So I continue to fight against sinking into despair. I usually put on a good face and positive attitude. I don't want to worry my friends and family, so I smile and continue life as "normal". I'm looking forward to going out for some wings tonight with friends and then listening and dancing to some music....until I run out of energy. The weather is supposed to dry up and warm up this weekend so maybe Hubby and I can go for our first ride of the season on "The Big Wing" (his Honda Goldwing) bike. Perhaps.....I'm finally ready to dump the worries and enjoy life a little better.