Lymphoma and the Importance of Listening to Your Body

This past week has gone by very quickly. I know my body has been very tired as it has been a very busy and active last 6 weeks. The tiredness is also a symptom of the lymphoma. Tiredness refers to a bone deep exhausted feeling that never really goes away.

Last Friday was the Relay for Life event in the evening. The event ran from 6 p.m. to Midnight. I intended to take it easy that day but at 8 a.m. I received a phone call booking my abdominal CT scan for that morning at 10:45. So off I went to get that done. I must have been on a cancellation list. I was told not to eat before the appointment. Thank goodness I had been slow that day to get my breakfast and was able to fast until the appointment. Hubby rewarded me with lunch at our favourite Vietnamese restaurant. At the Relay for Life opening ceremonies, my Survivors' Speech was well received. I managed to walk the Survivors' Lap and then only one more regular lap with my Hubby. I wanted to stay at the Relay through to the end.  After my one regular lap with Hubby, I was feeling weak, tired and shaky. We went to our team's campsite and I sat to rest. I hoped that the shakiness and weakness would pass. It didn't. We went home around 8:30 p.m. I was disappointed but I also know that I need to listen to my body. My Rituxan chemo maintenance treatment had been the day before and I could feel my body sinking into a dark pit of "flu-like" symptoms. So home we went.

I struggled with exhaustion up until Wednesday morning (June 27) when I awoke feeling refreshed. I cleaned some of the house as it hadn't been cleaned for a couple of weeks. Yesterday, I ran errands all day. It was too much. By the time I brought my groceries home and got them put away, I was really feeling ill....achy muscles, exhausted, sore abdomen and even a little nauseous. So I laid down and rested. Then I was up and going to finish the last bit of shopping.

The exhaustion stayed with me. I felt like going to bed at 6:30 p.m. but I forced myself to stay up until 9 p.m.  I slept through the night last night but was wide awake by 4:30 this morning. I've had a restful morning but I'm still feeling a little tired. I intend to finish cleaning the house and pick up some pork side ribs for Hubby's birthday BBQ on Monday. If I don't get the ribs today, then I'll make a run tomorrow to pick them up. I really don't like fighting the crowds in the stores or on the roads while driving to the stores. Yesterday was already very busy and I expect today to be more so. I want to get it all done today because tomorrow will be an absolute zoo. But....I will listen to my body. If it continues to tell me that it's too tired, then I won't be going out until tomorrow.

This coming week will be another busy week. I have a chiropractor appointment on Tuesday, 4 appointments on Wednesday and a good friend coming to visit on Thursday. I will see my oncologist on Wednesday when I will get the results from the CT scan. My hope is that I will get at least 2 (hopefully 3?) weeks free of medical appointments and Hubby and I can go away on the motorcycle for a holiday. We have not been able to think ahead more than 2 or 3 weeks to make plans. There is always the possibility that I go to my oncologist appointment and he tells me that it's now time for the biopsy. Hubby and I feel this hangs over our head all the time. The next step after a biopsy would be making a decision about treatments. In a perfect world, we would like to be able to escape the medical world for a few weeks. So we'll see what next week brings.

In the meantime, Hubby's birthday is a time to celebrate life with a few good friends. I know that I have the support of my hubby and my son. I know that if I need them to help with cleaning, I just need to ask. I also know that our friends are also willing to help out. I continue to evolve as a person and ask for help when I need it. I've delegated some aspects of the meal to my friends. If my body continues to say (maybe yell) that it's too tired, I will be delegating chores to my son or hubby.

I'm still learning to listen to my body.

Lymphoma, Making a Difference and Living Fully

What a full week this has been! I had a really nice visit with my father-in-law and we had to say good bye as he returned home. Monday started out with my second in a series of vaccinations. Tuesday was going to be my "day off" in a busy week. On Monday afternoon, I received an email regarding my role as Community Champion for the Kingston Relay for Life 2018. I was scheduled for an interview with our local paper in preparation for our Relay for Life event which is tomorrow. Here's the link to the article which ended up being on the front page.

http://www.thewhig.com/2018/06/19/cancer-survivor-prepares-for-next-battle

Sometimes I wonder about sharing my story. It really is no different than other cancer survivors and patients. I don't really consider myself anyone special except that I'm willing to be open about my experiences in an effort to help other people cope. This blog originally started out as a therapeutic tool and a way to let family and friends from afar know how I'm doing as I navigate through the health care system and this disease called lymphoma. Along the way, I have learned that it has helped strangers in their own journeys. I don't really feel like I'm a victim although sometimes in dark moments that label is worn. I really look at this whole experience as a trip....a journey. I have climbed aboard this train called lymphoma and I am travelling through to a destination which I hope will be a cure. Hope....that really is the reason for doing the Relay for Life. Hope for a cure. Hope that I live long enough for research to find a cure to Follicular Lymphoma. It's a journey. Sometimes it is an uphill journey. Right now, I seem to be travelling along a flat stretch of land that allows me to enjoy the scenery. I keep waiting for a steep hill down but so far the horizon is still just flat land. So let's enjoy the trip.

I'm enjoying having my son home and while Hubby was away this week, Son and I enjoyed seeing the movie "The Incredibles 2" on Tuesday night. What a great evening! I laughed and laughed as we enjoyed the movie together.

Yesterday I had an oncologist appointment. This appointment had two components to it. It was a check up in preparation for my Rituxan treatment which I will have this afternoon. The doctor's appointment was also to receive the results from some previous tests. My blood work was good so the treatment goes ahead as scheduled today. This is what was expected. The test results were for my Pulmonary Fitness Test (lung function test) and it came back with good news. My lungs continue to function well and there was no change from the one I had back in October. I do have a "mild abnormality" which is not a concern but just shows that my lungs are not as elastic as they should be. So the result from that test was good. The really good news is that my chest/throat CT scan was clear!! So as far as we know, they only "spots" are the two that have been found previously in my abdomen. In the last week, I have started to have some constant pain. However, it has not been acute enough for me to want to take extra-strength Tylenol. I think I have taken one pill 2 different nights to get me back to sleep when the pain interfered with my night's sleep. As a result of this development, my oncologist is sending me for another abdominal CT scan within the next couple of weeks. I will probably have another appointment to see him in 2 weeks. I expect to get the date for this appointment today when I go to the Chemo Lab in the Cancer Centre this afternoon.

After my morning appointment yesterday, I spent a wonderful afternoon with my best friend. We talked, we laughed and we visited our local farmer's market where we met up with another one of my friends who has a booth there. While at the market, 3 different strangers recognized me from the article in the paper. My best friend said "You're a celebrity!" The thing about "celebrity" is it is fleeting. I'm glad the article was written. I'm hoping it will help people to donate to the Relay for Life that will occur tomorrow. It's not too late to donate. You can donate to me on my Relay for Life page or to my team "The Cancer Honour Guard". Here's the link:

http://convio.cancer.ca/site/TR/RelayForLife/RFL_ON_even_?team_id=369594&pg=team&fr_id=23710

This morning I'm going to enjoy some singing with my friends as part of "The Grace Notes". Then I will make my way to the Cancer Centre for my treatment. Tomorrow night I will be part of the Relay for Life event and I will be making a survivor speech as part of the opening ceremonies. I'm already tired from the last few weeks of memory making. I can always rest later. Living fully is really important to me. Fame and recognition aren't what really counts. Spending time with my family and friends is important. Making lasting memories with them is truly the treasures of life in my opinion.

Happy Times While Waiting

I continue to wait for my next oncologist appointment where I will receive results of some of the various tests in the last 6 weeks. On June 4, I went for my chest/throat CT Scan just before going away to watch my son graduate from university. I now will get those results on June 20 when I see my oncologist.

In the meantime, I have thoroughly enjoyed being surrounded by family and celebrating life. Last week, my son graduated from university. We rented a house near the university for the 7 family members that were gathered to celebrate my son's achievement. What a great couple of days we had!! We travelled from our various home towns to gather and visit on the Tuesday. The special moments started when we met up with each other on the 401 OnRoute for lunch. Then we arrived at the house. The house overlooked a couple of ponds. What a peaceful and serene view we had from the living room and sitting room. We saw various birds at bird feeders and the sun reflecting on the ponds during the day. At dusk, the ponds reflected lovely pink and purple hues. On Wednesday, we awoke with great excitement and expectation. The morning was spent relaxing and reminiscing until it was time to get dressed up and go to the university for the graduation ceremony. Thankfully, the day was cool and the auditorium was not overly warm. The graduation ceremony started at 2:30 and went through to about 4:00. When I saw my son enter into the auditorium, I was choked up with emotion. When I saw him receive his hood and degree on stage, I had tears in my eyes. I am so very, very proud of my son. At the end, the graduates exited through side doors to the grounds outside. Once the academic party left the stage, the audience exited through the side doors to find our loved ones. When we found my son, I was the last one to get a hug. I was so proud and we just hugged and hugged for a long time. I was tearful as this was a milestone that I really wanted to reach. My son was also tearful as it was a celebration not only of his graduation but of life!  After many pictures taken outside, we went to the alumni sponsored reception. My son went to find his girlfriend to introduce her to us, the family, en masse. Poor girl. She seemed very lovely.

We left the university and returned to the house for about an hour while we relaxed before going out for a celebratory dinner. I had made the reservations back in March. It was a restaurant that we have passed for the last 5 years on our way to visit our son while he was in university. Our reservation was for 7:00 p.m. When we arrived, we were shown to a dining area that overlooked Lake Ontario. We had a lovely view of the lake at dusk. In the distance, we could see three ships waiting for their turn to go through the Welland Canal. My son recognized that his girlfriend and her family were at the table behind us. This was not planned! What a coincidence. My son also recognized one of his roommates from the last couple of years and her family as they also were dining in the restaurant. My family enjoyed a lovely meal full of laughter, pride and love. Pictures of Lake Ontario at dusk were taken as we exited the restaurant after our meal. I found the view stunning and so very relaxing. This was the end of a perfect day filled with love of family, pride and celebration with our son.

We returned to our rental home. I have never seen 7 people change out of suits and back into casual clothes so quickly. We sat around, chatted and fully enjoyed our family time. On Thursday morning we tidied up, packed up and went our separate ways to return home to our various destinations.

Life has continued to be full and enjoyable. On Friday, I did have a routine mammogram just because I have reached a certain age this year. After that appointment, I was involved with a taping of a preview show for the Relay for Life here in Kingston. Saturday, we had my husband's cousin and husband over for dinner (ribs, potato salad, coleslaw, cake and pie) and a lovely visit as my father-in-law is visiting. It was nice for him to see his niece and us to visit with friends who are also family. Sunday we had more friends over who always enjoy seeing my father-in-law.

Over the weekend and this week, I have enjoyed tending my gardens. I did some weeding and some much needed watering. Then there is the time spent on the patio watching the birds, squirrels, rabbits and chipmunks play and frolic in our back yard. The fledglings are just leaving their nests under the watchful eye of their parents. It is fun to watch them attempt to flutter and fly. Sometimes, the little baby birds are staggering to and fro as they hop around the back yard and make their way to the safety of our hedge. All lots of fun.

Last night I enjoyed a little boat cruise on Lake Ontario and the St. Lawrence River. It was around dusk and the colours were pastels and subdued to create a serene voyage. The scenery and water reflected at beautiful, soft pink glow. So life has been full and wonderful as I await the appointments next week. I have started to have a little of pain in my abdomen which signifies to me that things might be growing in there. Oh well.....I find our more next week. In the meantime, life is grand.

The Myriad of Emotions

Usually my frame of mind is pretty good while I wait for appointments, CT scans, results, spots to grow bigger, etc. My life is full of waiting at the moment. Although I'm looking forward to the milestone of my son's university graduation this week, I have had some negative emotions the last couple of days. I think it is because I just want to be healthy and be finished with the uncertainty of where my health is going to go. Anyway, I'm very grumpy today. I can't even stand myself! This is the kind of day that I just want to be on a deserted island and be left alone. My emotions started to head this way yesterday. I don't know why.

I've enjoyed working in my garden and there's still lots to do. I'm liking having my son home for the summer. I like going out on the motorcycle. I enjoy spending time with my friends and family....until I get in a funk like this. Is this anger due to me being bored? Is this anger due to the unfairness of an incurable type of lymphoma? Is it frustration that I'm not able to work? Is it the rut of no matter how often you clean and tidy, there's always more to do? I don't know.

So today is a day that is written off. I'll wallow in my funk for today. I'll go for my chest CT scan tomorrow and get ready for the graduation this week.

Cancer causes a mix of highs and lows. High and positive emotion when you realize that a treatment worked. The deep disappointment of finding out a treatment didn't work. The anger and sadness of the incessant worry of what is growing inside your body. Normally I can deal with this and live life in the moment and enjoy life. Today is not one of those days. Hopefully tomorrow will be better.