Rituxan Maintenance Treatment and Subsequent Effects

When I went to my oncologist appointment on Wednesday, I mentioned my concerns about infections to him. The good news is that I have managed to keep my weight somewhat stable since June. The reality is I had gained weight while on holidays (lots of restaurant eating) and have managed to lose most of it. My blood levels seem to be good. Due to my concerns about infections, the doctor is having another blood test done on blood that was taken just before my rituxan treatment on Thursday. After my appointment on Wednesday, I really enjoyed seeing some of my co-workers and my manager from my job in the Tuck Shop at the hospital. Before I worked at the hospital, it had the association of chemotherapy treatments and negative feelings. Now, I look forward to seeing the people that I have worked with and also other employees in the hospital that I used to always greet with a smile. They still remember me! It warms my heart.

My rituxan maintenance treatment was on Thursday. Thursday morning, I had a wonderful time with a friend of mine who I play music with. We made some music (and some mistakes) and shared laughter and friendship. Due to my eyes, we weren't able to play for the full hour so we then continued to share our friendship over a cup of tea. Before I knew it, it was time for me to leave. The morning went so quickly! I drove home, had some lunch and then caught the bus to the hospital. I deliberately arrived early because I wanted to visit with more co-workers and also drop in on the stem cell unit. I went up to Kidd 4 where I always went for my stem cell appointments. What a shock and surprise to see the office completely cleared out. They have obviously moved to somewhere else in the hospital. Eventually, I found out they were up on Kidd 9. The elevators were very busy and I knew that I would make it up to Kidd 9 quicker by taking the stairs. Well.....I was reminded that I'm still not in the best shape. I was huffing and puffing by the time I reached Kidd 7. Two more flights of stairs to go!!! I was glad there was no one else around as I sucked air greedily. I bent over to catch my breath. I considered sitting down on the steps to rest but realized that I might have trouble getting back up and going. So after a brief respite, I continued on. By the time I reached the stem cell unit, I truly was in need of a chair. Despite my breathlessness, the nurses were really pleased with how I looked. I'm looking very healthy. Of course, I do have rosy cheeks, but my face might have been a little more ruddy and red due to the climb up the steps. I had a lovely visit with the nurses. They were in awe of how much hair I have and how curly it is. Truthfully, it is in need of a trim. That will take place next week....at the hospital hair salon. After my visit in the stem cell unit, I purposely looked for one of my co-workers that I haven't seen in a long time. I found her. We had a brief visit as my chemo lab appointment was coming up quickly. Off I went in my usual brisk walk over to the Cancer Centre.

My appointment was for 2:00. I arrived slightly before as I needed to register at the front desk first. I had the same lady handle my registration as I did on Wednesday when I registered for my doctor's appointment. I then made my way up to the chemo lab. In 2012, I used to have anxiety when I went for chemo appointments. Even as recently as last year, I can remember being in the midst of chemo treatments and having anxiety and feeling ill while waiting for my appointment. On Thursday, it was just like a routine doctor's visit. When the nurse called my name, I looked up and didn't recognize her. She recognized me though. Because on Wednesday, blood had been taking out of my right arm, the nurse wanted to insert the IV into my left arm. She wasn't pleased about the choices of veins, so she saw a vein on the inside of my wrist that she thought might work. As she inserted the needle, I felt it sting like never before. I mentioned it to her and she thought everything was fine. She took the blood needed for the blood test and then went to flush the site. The pain was very uncomfortable. I have had many flushes in the last year and it has never hurt like that. I mentioned again that it was very sore. The nurse just thought I was extra sensitive.....until she looked at the site. It was swelling and already bruised looking. The flush was not going into the vein! She took the IV out and decided to go for the vein on the top of my left hand. This worked better. My treatment took 2 1/2 hours to complete which took me to 4:30 p.m. The nurse was finished her shift at 4:00 p.m. She packed up her stuff and went. The "late shift" nurse took over. I have had her work with me before. I do remember her. When she came to take out my IV at the end of my treatment, she also took off the covering over the original site on the inside of my wrist. It was very swollen, red and purple. She was concerned. She suggested that perhaps I should keep my ID bracelet on in case I need to make an emergency visit....in case I get phlebitis or cellulitis. I've had both in the past. I had phlebitis when my son was born by C-section 24 years ago. I had cellulitis last August in my chemo treatment cycle. So I'm spending my weekend keeping a close eye on that left wrist.

After my chemo appointment on Thursday, a very good friend came down to the Cancer Centre to drive me home. The benadryl that is always given to me before the treatment had put me into a very tired mode. Thursday night, I was in bed by 8:00. Hubby tucked me in and told me on Friday morning that I wasn't making much sense when I went to bed Thursday night.  Yesterday, I did 2 loads of laundry and picked some more tomatoes. That was enough. My wrist was swelling up. I wanted to play piano but again, the wrist was not up to the activity. Last night, it was aching enough to keep me awake. This morning, I am fighting a headache which is a side effect of the rituxan. I'm also feeling weary. I've done a load of laundry early this morning and hung it outside. These were clothes and blankets from our little campfire last Saturday. I needed to get them washed to get rid of the campfire smoke smell. I really like seeing my wash hang on the line. For some reason, it gives me great satisfaction to hang it up and then watch it sway in the breeze. Although today, there is not that much of a breeze. If the wash doesn't dry completely by the end of the day, I'll throw it in the dryer.

I was hoping to cut the grass today too but I seem to have run out of energy. I will be taking some tylenol to fight the headache that is just there. It doesn't help that there is hammering and noise going on as we have a leak fixed in the roof. I haven't heard Hubby or the man who's working on the roof fall off. This is always my fear. So I'm having a fairly uneventful weekend. I'm hoping that I'll be able to go to church tomorrow. I like seeing the people in my church. It is like an extended family and I know they truly care about each other. I went last week and met our new minister for the first time. I really, really liked her sermon and her manner. It makes me want to go back. We'll see how I'm doing tomorrow.

Reality Check and Anxiety

As my blog has shown, I have had a fantastic time of relief from doctors' appointments, tests and treatments. I have enjoyed a great holiday, outings with friends and visits with friends and family. I've lived in the moment and lived one day at a time. Carpe diem....seize the day...wring as much joy out of my existence as I can.

I knew that I had another rituxan maintenance chemo treatment coming up in September. I thought it would be the end of September. I got a reality check yesterday afternoon when the chemo lab called with my appointment for my treatment. It is on Thursday.....of this week. As usual, I will have a check up with my oncologist the day before.....that's tomorrow.

This reality check came after another weekend of fun with my hubby and with friends. I went to the Craft Beer and Ribfest on Saturday afternoon, had a campfire with really good friends on Saturday night and went with Hubby to the Multicultural Festival on Sunday. This was after finally making it to church on Sunday morning where I met up with my "church family" who I haven't seen in many months. It was a morning full of warmth and love. I enjoyed the food and activity at the Multicultural Festival. But....while I enjoyed my weekend, I also was struggling with an eye infection which has now spread to both eyes. I also had an infection develop in a scratch on my hand while I was away on holidays. The scratch has fully healed but these infections worry me because it is a reminder that my immune system is not 100%. I think this is only the third eye infection in my life. I bought drops on Sunday but they don't seem to be helping. I will be mentioning this to my oncologist tomorrow.

My sudden appointments this week and the eye infections are a harsh reminder that all is not rosy in my world. I can live life to the fullest. This is not keeping me down but it is a reminder that my immune system is not and may not ever function at 100%. This is a reminder that, yes, there is no cure for the follicular lymphoma. This is a reminder that my life is probably shortened and I need to live just one day at a time. So I'm in the process of making arrangements for transportation to my treatment on Thursday. I can drive myself there but my mind will be impaired after the treatment and I probably shouldn't drive home. As a compromise and so I am not an imposition, I will probably take the bus to my treatment. Then I just need to find a ride home.

So after living life fully for the summer, I am back to living with some anxiety regarding infections. Is this a downturn of my health? Is the lymphoma working on me more again? Will I have to go for more tests again? I find it ironic that this all is happening as our weather has turned cool, grey, dreary and rainy. I am not going to wallow in this dreary, emotional place but I am acknowledging it so that I can move upwards and onwards. The rituxan treatment will make me feel like I have the flu and I will be very tired. I will feel cold. I will ache. I will have headaches/sinus aches. I may feel nauseous again. On Thursday, I will receive some benadryl before the treatment which will make me very tired and sleepy.

As I was writing this last paragraph, it is grey and raining outside. I looked out my living room window from my couch and I saw two small children waiting for the school bus across the street. They are wearing brightly coloured boots that popped against the grey morning. The little boy is wearing a bright blue raincoat. His older sister is  wearing a bright pink scarf at the neck of her dark blue raincoat. Their mom is waiting with them and has rusty coloured lab-kind of dog on a leash. The dog is bright eyed and alert as he/she hears the bus coming. The ears are pointed forward as he/she looks up the street. The tail is up and alert.This was a beautiful splash of colour in life that has appeared just as I was feeling sorry for myself.

Life is worth living each day fully. I do have a raincoat. Perhaps I'll put it on and go for a walk in the drizzle. I need to pick up a bicycle helmet so that I can take out my "new" (to me) bike and learn to ride again. Or I'll put on my raincoat and play in my garden in the drizzle. Fear can take me to a dark place if I let it. I am not going to let it take me there. So yes....I've had a reality check and reminder of how things are and may be. I have no timeline except for the appointments this week. So why waste a day feeling sorry for myself when I can seize it and walk in the rain. According to the television, it will be warmer today. Why not indulge and walk in the rain. Maybe go geocaching. Maybe pick more tomatoes. Maybe just walk. Maybe I'll just buy myself some nice bright red rubber boots like the little girl across the street. Carpe diem....seize the day!

Catching Up

So it's been a couple of weeks since I last posted. I'm still feeling well and my health seems to be good. When I left to go on our 3 week holiday on The Goldwing, my vegetable garden was limping along due to lack of rain. I kept watering it with the rainwater from our rain barrel, but the barrel had also dried up. I even kept the gardens alive and getting ready to produce by watering with our municipal water. I prefer the rainwater that I collect because it doesn't have any chlorine in it.

When I arrived home a couple of weeks ago, my garden had exploded with growth and produce in that 3 week period. My son, who was home during our holidays, indicated that we had lots of rain. My 2 little cucumber plants had thrived and were full of cucumbers. My little tomato plants that I thought were going to die, had thrived exceptionally well. The one plant has grown out of the garden and onto my patio and up through my patio table. It is full of blossoms. I have been picking tomatoes every 2 days for the last 2 weeks. My freezer is full of cherry tomatoes. I have been snacking on tomatoes right from the vine while I work outside. I need to be out again today to pick them. It is extremely hot today and so I will wait and pick them this evening when it is slightly cooler. My beets also thrived while I was away. I have frozen beets in my freezer now ready for me to eat them during the winter. I still have more beets that I'm waiting to finish growing before I pull them from the garden. I have harvested my garlic bulbs. Some I will use a seeds and replant this Fall yet.

So the last 2 weeks have been spent harvesting and weeding my gardens and keeping up with the laundry. My son moved away for good to start his own career and life. It was a sad day this past weekend when I saw him driving away. I know he will come back to visit but it will be just that....a visit. So I happily did loads of laundry as my last effort to "mother" him before he moved away this past Saturday. Saturday night, Hubby and I were distracted from missing our son as we went to our friends' place for a campfire and visit. Hubby also surprised me with an overnight trip to Syracuse (not on The Goldwing this time) to see the Buffalo Bisons (Toronto Blue Jays affiliate) play against the Syracuse Chiefs (Washington Nationals affiliate) on Sunday and Monday.

I was really pleased to see Vladimir Guerrero Jr, Dwight Smith Jr., and Richard Urena play for the Bisons. These were names that I recognized and had seen play on television while up with the Blue Jays at various times. Guerrero Jr. hasn't played with the Toronto Blue Jays since the exhibition game in Montreal in the Spring. But he definitely is creating lots of buzz and excitement and it was good to see him play. I also recognized the Bisons' first base coach. He used to play for the Blue Jays out in centre field. It was Devon White. Unfortunately, the Bisons lost both games and ended their season. The Chiefs also were finished for the season as they didn't make the playoffs either. The Syracuse Chiefs have been bought by the New York Mets and so the season ticket holders were sad to be leaving this season. Next season may bring a new name to the club.

After our 24+ hours away, yesterday was spent doing more laundry. You see, at the game on Monday, I had signed up to be part of a Diamond Giveaway which took place at the end of the game. 100 women ran onto the field each wielding a small wooden spoon and we had to dig in the dirt between the first, second and third base bags. There were three poker chips buried 1/2 inch to 1 inch below the surface and each corresponded with a prize. One chip was for a diamond pendant necklace. A second chip was for a pair of diamond stud earrings. The third chip was for a prize pack of Syracuse Chiefs swag. During the game, I had deduced that the chips would not be along the baselines because the runners' cleats would dig the chips out. I also didn't believe the chips would be where the basemen stand because, again, their cleats would dig up the chips. The rules of this contest also stated that the chips would not be within 2 feet of the grass infield or the grass outfield. During the game, I figured that most of the women would run to the dirt between first and second because it was closest to where we all started out from. Not me! I decided to run to a spot between where the third baseman and shortstop would place themselves. I merrily dug away at the hardened dirt with my little wooden spoon. I wore it down to nothing and then I saw security and Chiefs staff with piles of wooden spoons. I called out for another spoon and kept digging. I had a lot of fun digging in the dirt. It reminded me of when I was a child and a bit of a tomboy. I used to love playing in the mud and dirt. So I played in the red dirt and dust of the ball field. I didn't win anything but I certainly had fun. Yesterday, I was feeling some aches and pains.

It was a good thing that last night we were having Hubby's cousin and his aunt over for a visit over tea and dessert. I was forced to keep moving and keep the achy muscles limbered up while I finally tackled cleaning the house after having been away on our holidays. In addition to madly cleaning the house (it really needed it), I did the laundry from our trip away and I made a zucchini loaf and a zucchini cake for our dessert last night. Today, I am tired. The heat has gotten to me. The temperature with the humidity is pushing 40 degrees celsius today. So I'm catching up on some paperwork and the blog.

I will probably spend this afternoon trying to figure out the answers to some puzzle caches for my geocaching hobby. I'm not very good at these puzzle caches but I've been told that you just have to work at it and gain the experience. This will be a good task on this hot afternoon. I will also take some breaks and play the piano for my own enjoyment. I am finding the house quiet after having my son home for the summer. It's been a great summer for me and I continue to enjoy my time off work and my break from doctors' appointments.

The only appointments I have had in July and August has been to see my family doctor and continue to get my vaccinations like a young child. Due to my stem cell transplant, I am required to get Hepatitis B shots. These are not optional. There is a shortage of the vaccine in my town. I have managed to find enough for my 2 shots so far. My next Hep B shot isn't until January. I'm hoping that there will be more vaccine available for me by then. Thank goodness for Hubby's health plan because they help cover the cost. Our medicare doesn't cover these shots and they cost $200 per shot. I can't imagine the financial strain on cancer patients' families who don't have insurance benefits and coverage. Hubby's has been a godsend throughout my process and treatments. I have lots and lots of blessings to be thankful for.