Thursday, 31 August 2017

Day 18 First Chemo Round - Cold, Tired & Disappointed

All day today, I have been cold and I can't get warmed up. Although it was warm outside and sunny, I was wrapped in a sweater, long pants and my prayer shawl that was given to me 5 years ago by the prayer group at my mom's church....the church I grew up in. Despite being wrapped up, I was still cold and tired today.

It was a fairly quiet day so I puttered around the house and made some phone calls. I called to see what my neutraphil (white blood cell) count was from my blood work yesterday. I remember that the lowest acceptable level for treatment to continue is 1.5. The level from my blood test yesterday is 0.70. I was really disappointed to hear this was the number. I've been eating all the correct vegetables, fruits, nuts, meat and yogurt to help raise the white blood cell count. Tuesday's chemo may be in jeopardy. I'm really disappointed. I know that I have more blood to be tested on Tuesday and I will continue to feed myself the proper foods to boost it but I'm worried.....very worried.

I had an errand to run this afternoon and it felt good to be out in the bright daylight for a little bit. Tonight, I'm struggling to be my normal self. On a positive note, I finished my antibiotics so that will be one less medication that is hard on the stomach. I'm hoping tomorrow will be a good day. I'll head to bed early tonight to try and get myself out of this funk.

Wednesday, 30 August 2017

Day 17 First Chemo Round - Doctor's Appointment & Errands

I awoke very early again this morning (5:30) and needed to be up to take my pills with food at 6:15. So I grabbed a book with a cup of tea and enjoyed some quiet, relaxing time before making breakfast and taking my antibiotics for my forearm and the Nystatin for my thrush. Both are looking better. Tomorrow will be my last day of taking the antibiotics. Woo Hoo!!! One less medication that affects my stomach and makes me nauseous. Good riddance and hopefully I won't have to go back on antibiotics for awhile.

I had to be at the Cancer Clinic for my doctor's appointment at 9:00 a.m. but I always have to be there 45 minutes before the appointment to have blood taken and tested. The doctor always wants to check my red blood cell, white blood cell and platelet counts. The other markers he wants to look for is my kidney function and lymphoma/cancer protein in the blood.  So arrived at the Cancer Clinic around 8 a.m. to have my blood taken (it takes 45 minutes to 1 hour to get the results) and tested so that the results would be available for my appointment at 9:00. This was the first time that we've been able to use my picc line that was installed on Friday. As I registered at my arrival, I found out that in order to have blood taken using my picc line, I had to go to the chemo lab to have the blood taken. When I got to the chemo lab, I was told the blood room doesn't open until 8:30. So there was no way that my blood would be tested and back to my doctor for 9:00. The other option was to go to the normal blood room and have my arm pricked to have the blood taken. That blood room opens at 7:45 a.m. I opted to use my picc line because of the infection that I've been fighting in my forearm. So as a result of my choice, the doctor did not have a full report from my blood test. The white blood cell count had not been finished in time for my appointment. This was disappointing because this was the count that I was most concerned about. The rest of my appointment went well. My other counts were OK and would allow the chemo to continue. I am scheduled for my next chemo to start on Tues. Sept. 5. I will have to have more blood work done to check my white blood cell counts. Hopefully they will have risen and the chemo and take place.  Once I got home, the phone rang and it was the chemo scheduling nurse. I am supposed to start my chemo at 8:30 a.m.  I mentioned that I have to have blood work done ahead of time. The only way that can happen is for me to go to the normal blood lab and have my arm poked again to have blood taken. I have to be there at 7:45 a.m. So much for the advantage of having a picc line and reducing the number of times I have to be poked. Again, a little disappointing but I'll do what I have to do.

After my appointment, I went to visit some of my former co-workers and volunteers. This was kind of like a little reward for me. I'm into rewarding myself for going through some of these appointments. Anyway, then hubby and I headed home to rest for a bit. Then we decided to go for lunch at our favourite Afghani restaurant called Limestone Kebab House. Their food is excellent. I opted to have their veggie wrap as it has many of the foods that help boost white blood cell counts. The taboulah in the wrap helps with the protein requirement. I had my antibiotics with me and took the pill with their house tea. I took the Nystatin while sitting in the car. I have to take it using a dropper so while hubby was picking up some drycleaning, I took my Nystatin.

After lunch, we made our way to the Cataraqui Cemetery. Because of the seriousness of the diagnosis this time, hubby and I decided that I need to make sure all the details for my Celebration of Life and internment wishes are fully finalized. Five years ago, I had a basic outline planned out but not final details. This time, it's time to finish the planning. This would make it easier on hubby if the worst happens although I don't intend to give up and use this just yet. So we wandered through the cemetery and looked at the various sized monuments on the graves and also looked at the areas that house the cremated remains in walls/columns and in the gardens. This gave me a better idea of what I might want. Hubby and made an appointment with someone in the office ahead of time and we were there early. So we enjoyed wandering and seeing the various options I might have.  As the time for the appointment approached, we made our way back to the office.

How naive I've been!! Our eyes were certainly opened as far as the pricing of various options and add-ons. While we met with the funeral director, we had many questions answered and learned a lot about what we have to pay for. Details, details, details!! The funeral director took us around to show us the options for cremated remains. It was all described in terms of "real estate property". We could own "property". We could own a space in a "condo" or have our own "home". We were driven around just like a realtor would if we were looking at houses, etc. It was very informative but at one point, hubby looked like a deer in the headlights. There was a lot of information and we have a lot to look over, think about and make decisions on.  After our appointment, we decided to drop in on a local funeral home that hubby had been in contact with several weeks ago. The funeral director that he had been communicating with was not in today. So we made an appointment to go back and see him on Friday.

I have a lot of mixed feelings. I want a place where my hubby and children can come and "visit". I think I'm leaning towards a "condo" style resting place. I find myself having to force myself to be practical and not emotional about all this. I want these details looked after so that if my health declines quickly, hubby will not have to deal with this. It will be all ready. I would like it to be that hubby just needs to make a couple of phone calls to set the plans in motion.

When we got home from our errands, I was physically and emotionally tired. I took my book and laid down to read. As per normal when I do this, I fell asleep. I awoke just before dinner feeling refreshed. We enjoyed a lovely meatloaf dinner prepared by a good friend who had dropped of frozen dinners for us a few weeks ago. I could only eat half of my portion of the meatloaf, so I'll have the rest of it for dinner tomorrow night. After dinner, I went for a walk with my friend from around the corner and enjoyed our chat.....although truth be told I think I did most of the talking about my afternoon. It confirmed in her mind what she doesn't want.

Now I'm relaxing and enjoying watching the Toronto Blue Jays on television. I would love to be at a real game, but truth be told, I probably won't be going to any large, crowded venues for a long time. My immune system is too compromised to sit among a lot of people who would be coughing, hacking, etc. This is disappointing because I really like to go to our local OHL team, The Kingston Frontenacs, hockey games. Oh well....short term pain for long term gain. I have to admit that the emotional component of chemo is hard. When you feel great, you worry about the upcoming next treatment because you know how awful you're going to feel. You get in the dumps and start to dread what's coming up. On top of that, you feel keen disappointment about the things you like to do and now are curtailed from doing. When my emotions start to sink, I really find that comments on the blog and the cards of encouragement that I've been receiving in the mail help me to recognize the love and support of my friends and family. The prayers that are ongoing truly help me emotionally and I really do believe that some of the specific requests for easing the nausea, etc. has helped. Is it placebo? Is it belief? Is it mind over matter? I don't know. I just know it seems to work. So thank you to my family and friends who are supporting me emotionally throughout all this so far. It really helps!!

Tuesday, 29 August 2017

Day 16 First Chemo Round - A Tired Day

I awoke this morning at 6:00 in time to take my clindamycin, tylenol and nystatin. At that time of the morning, there's no sense in trying to go back to sleep. I had to take the car in for an oil change/tire rotation and the appointment was for 9:00 a.m. I decided that since I was going to be out with the car anyway, I would go to my optometrist to buy some frames. Mine had broke the day before my first chemo while hubby and I had been enjoying an afternoon on the bike and we'd stopped at The Cove Inn for lunch. So today was a day of errands.

When I arrived at the dealership to check in the car for its appointment, I was told that the next scheduled appointment wasn't for today but for June 13, 2019! Obviously, there had been a mistake somewhere in the booking process. Hubby had made the appointment and wasn't able to take the car himself today. So I didn't mind stepping in and taking the car. I could use the waiting time in the very comfortable waiting area to read my current book. The service department fit me in. I didn't get a lot of reading done because I was having more fun people watching. About 10:30, I was called to the desk and told my car was ready.  While I had been waiting, I really started to feel tired. Not just weary but bone tired.

I considered driving straight home, but I really do need new frames and who knows when I will feel well enough to go to the optometrist to look at frames, try them on and get them fitted. So I sucked up the tired feelings and went on to the optometrist's store.  I quickly found 2 frames that I liked. One will be used for my everyday use and the other pair of frames will be my prescription sunglasses. I've never had sunglasses before! So this is exciting. The optometrist reminded me that I really need to have my eyes tested. I haven't had an appointment with her since 2014. However, I do see an opthamologist annually since 2011. I was going to make an appointment for at the optometrist, but with all the diagnostic procedures and other doctor appointments throughout the summer, I never got the appointment made. This morning, I explained to my optometrist that I am currently in chemo and it will affect my eye sight. I know that I will need to wait until after I'm finished the whole chemotherapy and stem cell transplant process and also let my eyes settle after all that before I go for a test. I expect I won't be going for an optometrist appointment for at least 1 year. She agreed that I should wait for the check up appointment. So I ordered my frames and they should be in with my prescription lenses in about a week. As I was driving home, I realized that one week from now, I probably won't be feeling up to going out to pick up, try on the glasses and have them adjusted. Oh well, they'll wait there for me at the store. When they call to tell me the glasses are in, I'll just explain my situation and hopefully I'll be able to go get the new glasses in 2 weeks time.

My original plan today was to drop by the grocery store and pick up a few items that I need. However, I was so tired after the car and glasses appointments that I went home, had some lunch, swallowed my pills and did the swish and swallow of the nystatin and then finally laid my weary bones down to rest.  I fell asleep immediately and slept soundly for an hour. However, I didn't feel refreshed. I continue to feel very tired today. Hubby and I did the shopping on the way home from work when I went to pick him up.

I was planning to go for a walk with a very good friend tonight, but I texted her and begged off from the walk. I'm just too tired. I became very grumpy and whiny. I'm tired of having to stick to a schedule and live according to the clock. Dinner tonight wasn't able to be enjoyed and savoured because I had to make sure I got the food into me so that I could take the pills and Nystatin. Then I'm left with the horrible taste of the Nystatin for 60 minutes before I can eat the yogurt that the clindamycin needs to help the stomach. I had several minutes where I was just fed up. This is no quality of life. Pills, pills, pills. Yucky tasting liquid medication. Carefully watching what I eat so the thrush doesn't want to grow more. Careful not to upset a stomach. Make sure I'm getting enough liquid into me. Waaaaaaaa!!!!! I was grumpy!!!!

So it will be an early night for me tonight. I have to be at the Cancer Clinic for 8:15 tomorrow morning for some blood work and a doctor's appointment all in preparation for the second chemo round on Tuesday. So I'm signing off tonight and hoping some extra rest will help me regain my equilibrium emotionally. I know that there are other people out there who have it worse than me. And normally, I can manage not to dwell in the dark place of my emotions. That doesn't help or change anything and only allows the cancer to steal a good day. Here's hoping I will awake tomorrow refreshed and feeling better emotionally.

Monday, 28 August 2017

Day 15 First Chemo Round - Thrush, Hair, Busy Day

My mouth has been feeling like thrush is trying to get a grip since about last Tuesday (Aug. 22). Today as I ate my lunch, the tip of my tongue was really stinging. I thought maybe I had bit my tongue and cut it open. When I looked in the mirror, I saw a tiny white patch the size of a pin head on the tip of my tongue. Thank goodness, on Thursday, I had my family doctor give me a prescription for Nystatin. So after eating my lunch, I did the swish and swallow of the Nystatin. Here's hoping it doesn't upset my stomach as I've been feeling really good lately.

I had a very productive day today. I refuse to be an invalid before the chemo lays me flat. So I laundered my bedding and hung it out on the line. I love the smell of freshly aired laundry. I always sleep so much better with that fresh air smell on the sheets. It was another sunny, blue sky kind of day with a slight breeze so the bedding dried fairly quickly.

After lunch, I had an appointment with my hair stylist to come to the house and trim my hair. My hair will fall out and it has already thinned out a little bit. But because I have such a thick head of hair, you really can't tell that I'm losing it. The trim was just what I needed to make my hair look and sit better.

After my hair stylist left, I realized that I had forgotten to take my Clindmaycin (antibiotic) and my Tylenol. So there I had to have a snack so that the Clindamycin won't bother my stomach. I also pulled out a whole chicken to roast and have ready for when my hubby came home from work. I experimented with the rub that I put on the chicken. It was frozen so I put it in and cooked it from frozen. Later in the afternoon, I added some potatoes to the oven so we would have baked potatoes. I also prepped some fresh broccoli as our vegetable dish.

While doing all this, I recognized that it was late afternoon and I had to take some more Nystatin for my thrush. I'm glad I have a medication dosing journal because I made a mistake. I meant to take the Nystatin around 4 p.m. but instead I took my Clindamycin and Tylenol.....again. The only reason I recognized my mistake (after I swallowed the pills, of course) was because I went to write it down in the journal. OOPS!!!! I'm supposed to take the pills every 6 hours. I took it only 3 hours after my last dose. So then I took the Nystatin and now I have to remember that all these pills/liquid will be taken at the same time. Clindamycin needs to be taken with food. The Nystatin needs to be taken after food but then nothing to eat or drink for 30 minutes afterwards. This all gets very confusing for me especially when I get tired. That's why I have my medicine dosing journal. And my Liquid Intake Journal.

Also this afternoon, I had a 2 hour visit with a friend on the phone while the chicken was cooking. When the phone call ended, it was time to get the gravy ready. I experimented with that and used some bourbon to deglaze the roasting pan. Then deglazed it again with hot water. The gravy turned out very well and my hubby was stumped on the "secret ingredient".

After dinner, I went for a 30 minute walk with a very special friend. We were both out of breath by the time we returned home. And then.....I am tired. Today was a good day and very productive. But I'm tired. So it's off to bed early for me. Tomorrow morning will be spent doing errands and I hope that I can rest in the afternoon. We'll see about tomorrow but for now....I'm off to bed. I feel good but tired.

Sunday, 27 August 2017

Day 14 First Chemo Round - A Glorious Day for a Motorcycle Ride

Like I mentioned yesterday, I pushed myself to get all my chores done so that today was totally free. I had an appointment with CCAC to have my picc line insertion cleaned and the picc line cleared and make sure it's working properly. I awoke this morning feeling very tired but I was really looking forward to going for a ride on the back of my hubby's Honda Goldwing. It was a comfortable, moderate temperature today with an absolutely blue, cloudless sky with lots of sun. There's no way that I was NOT going out on the bike.

So I suggested to hubby that we ride the bike to my appointment and then continue on for the rest of the day. The only other stop I wanted to make was to drop off some music related materials to one of my former students. She is a very special student with such a gift of music. Her interpretation of the written music is magical to witness. She is developing the talent of composition as well. So I really wanted her to have some of the material that I was looking to pass on. What a wonderful visit I had with her and her family. And....she surprised me with a beautiful work of art that she has hand drawn. I carefully placed it in the saddle bag of the bike and then hopped on behind hubby and we were off.

I love riding along the shores of Lake Ontario. The sight of the water is very soothing and today it was a grey-green kind of colour. I saw swans, Canada Geese (of course), ducks and other waterfowl. I love feel of the wind whistling through the vents in my helmet. I love being able to tilt my head back and see the blue sky above me. At one point, I even wanted to extend both arms straight out from my side and yell "I'm alive!!!". I didn't do that because, with my luck, my arm would get caught up with a car going by us. It was a glorious day for a ride. We stopped at a little rest area on the shores of Lake Ontario to have a bite of lunch which included fig bars, Welch's fruit snacks, juice boxes and a Raspberry Iced Tea for me. I was very content to just sit at the picnic table beside the water and listen/watch the waves lap against the shore. The rhythmic lapping sound is very soothing to me. The stone/pebble beach reminded me of when my father taught me to skip stones as a little girl. We used to drive to Kaufmann Flats near Kitchener, ON where he would teach us to skip stones. Today, I really wanted to pick up some stones and skip them but I am also aware that my white blood cells are low and I don't need to take the unnecessary risk of picking up some bacteria to introduce an infection to myself (such as salmonella or e-coli). So I was content to just relax, enjoy the scenery and listen to the sounds of the water slapping the pebble shore. Eventually it was time to climb back on the bike and continue our adventure of the day.

We continued to ride along the shores of Lake Ontario and then we turned to head towards Hay Bay. We took the South Shore Road and as I continued to look around and enjoy the scenery, I looked up and saw a big Osprey on a limb of a tree holding a fish in its talons. The tail of the fish was drooping downwards and as I watched, the Osprey took a big rip out of the fish and ate it. It was like watching through slow motion. This is why I like riding on the back of the bike. I see so much more than when I'm in a car! You can look directly up at the beautiful sky and at the same time see an unexpected sight like the Osprey. I made a mental note to tell my hubby about this when next we stopped. As we continued riding along, not much further along, I saw the Osprey's nest. He/she must have been hunting/feeding as there was a baby peeking out of the top of the nest. When I looked back at the road in front of us, I saw a yellow finch fly across the road ahead of us. What a glorious day!!!! I felt so free and alive!

Hubby continued to navigate the South Shore Road and then we turned left. Then left again and now we were on County Road 9 which runs along the north shore of Hay Bay. As I was looking around during the ride, I saw a trailer park on our left. Oh no!!!! There was the shell of a burnt out trailer. It looked like someone may have been having a campfire at one point this summer and a spark must have started the trailer fire. The owners look like they lost everything. However, thank goodness the rest of the trailers around it were not affected. Sad.......

Hubby's meandering ride took us eventually to Napanee. I needed to stop to take some of my pills. I mentioned to my hubby that there was The Waterfront River Pub & Terrace. I've heard they have good food. Did he want to stop for a break, drink and bite to eat? So into the parking lot he weaves the bike and finds a space to park. We awaited our turn to be seated. We really lucked out!!! We got a table on the patio right beside the boardwalk and Napanee River! What a peaceful and beautiful view we had! On top of that, there was a live band playing big band and swing music. A beautiful venue for a break. We ordered our drinks and food. While we were chatting, I saw movement from the corner of my left eye. I looked over and I see a volunteer who I used to work with at the hospital. What a nice surprise!!! She had seen me walk in with my hubby while she was having lunch with her daughter. We enjoyed a hug and too brief a chat. Running into her helped make my day even more special.

After finishing up our little snack and then me taking my pills, we climbed back on the Goldwing and meandered our way back home. That meandering took us back to the shores of Lake Ontario where I had to stop and eat a yogurt to help my stomach process one of my pills I had to take an hour earlier. Eventually we made our way back home.

I'm really tired tonight but in such a good way. I really believe that I need to celebrate each day that I feel well. What was going through my mind today was the phrase "Seize the day!"  So that's what I'll be doing on my good days.....seize the day, wring the most out of it and fully enjoy my day. Maybe I'll sleep better tonight.

Saturday, 26 August 2017

Day 13 First Chemo Round - Nutrition, Quinoa Salad and Blood Cell Counts

Last night, we made plans to go out to dinner tonight with some very special friends who celebrated an anniversary this week. I was excited to see them and we also want to go for a ride on the Honda Goldwing tomorrow. So that means all the laundry needed to get done today so that tomorrow could be free to go riding. I also wanted to make my quinoa salad to help raise my white blood cell count. This salad also helps fight the tendency for me to have thrush. I developed this recipe back in 2012 when I was fighting thrush during my 6th chemo cycle. I looked up the post,  Day 4 - 6th Chemo Cycle, so that I could make this recipe today. I decided to use the vegetables that are helpful in raising white blood cell counts. The homemade dressing is good for fighting thrush.

So while I did 5 loads of laundry and hung 3 on the line to dry and the rest put in the dryer, I also made my quinoa salad. Today I used radishes, cucumber, carrots, celery, red onion, avocado, a granny smith apple and pecans chopped up to add to my 2 cups of cooked and cooled quinoa. After tossing it all together, I mixed together about 2 cups of plain no fat yogurt, 2 Tbsp. of cider vinegar, a few shakes of cinnamon, 1 shake of ground cardamom and a couple shakes of celery seed. Then I mixed it all together and put in the fridge for it all to blend together. I had this for lunch and I can use this to put food in my stomach for the various pills that I have to take with food.

I had a busy day, but I am feeling great. I see that I'm getting pale and I suspect my red blood cell counts are decreasing. So tonight, I decided that while we were going out with friends for dinner, I would make sure I eat some red meat to help raise those red blood cell counts. Around 4:00 p.m., I started to drag. My nauseousness was returning a little because I was too tired. So I went and laid down to rest so that I could enjoy our dinner out with friends.

We went to one of our favourite Greek restaurants called The Greek Islands. I decided on having their dinner special which was a filet mignon kebab. I love Greek salads so, of course, I chose to start with that. The meal, as always, was delicious and involved lots of food. Surprisingly, I ate all of it. However, now I'm stuffed and a little uncomfortable. But....what a wonderful evening being with friends, enjoying each others' company and feeling the warmth of our friends' love. It's been a super day. I'm looking forward to tomorrow's ride on the bike. I'll be visiting the CCAC clinic to have my dressing changed on my picc line and to have it cleaned and cleared. I think we'll ride over on the Goldwing and then jump on the bike and go for a ride directly from the clinic.

Here's hoping for a good night's sleep and another great day tomorrow. It's been a string of a couple of great days so far. Life is good at the moment!

Friday, 25 August 2017

Day 12 First Chemo Round - I'm not that Picky

I did not sleep well last night. I got about 3 hours sleep because I was fretting and anxious about having my picc line put in today.  I awoke at 6 a.m. and made sure I took my antibiotic for my lower left arm. It is already showing improvement as it is less tender and less red and swollen. I had my breakfast, had my pill and then jumped in the shower. I was ready to go by 7 a.m. but the appointment wasn't until 9:30 a.m.

After much puttering around, putting dishes away from the dishwasher, etc., it was finally time to go. Hubby and I decided to park at his work and walk to the hospital from there. We had some extra time, so I went into hubby's work and said hello to a really good friend we have there. It was so nice to see him and feel a little bit of normalcy. I was feeling anxious and this helped to pass the extra time before starting the walk down to the hospital. Best of all, I got to see our friend. Hubby then approached and said "It's time." It was an enjoyable walk and I was feeling great! As I walked into the hospital, I was greeted by volunteers that I have seen while working there. It's a little bit like "old home week" when I walk into the hospital.

Hubby and I made our way to the Imaging Department where I was to be getting my picc line inserted. While waiting in the registration line, I really felt sorry for the clerk as she was being given a bit of a hard time by the gentleman in front of me. By the time I got to the desk, I couldn't help but use some humour to make her day go a little bit better. After registering, hubby and I had to go to another waiting area for our turn to be called. I love to people watch and so waiting is not an uncomfortable time for me. I saw a young baby (11 days old), I saw another young family with 2 little children. The little girl was enjoying waiting and playing with some play equipment that has been donated to the hospital by the Ronald McDonald House Foundation. I loved seeing the little newborns that went by. They're so tiny and precious!!

Finally my name was called. We were ushered through to the room where I had been on July 21 for my IVR biopsy.  I was expecting that I would be told to put a gown on. I was expecting that I would be sedated. I was feeling very anxious. While waiting, I was sure I heard someone gagging violently nearby. My tummy started to want to roll in empathy. Hubby took one look at my face and quickly turned his face away.....but not before I saw a small smirk. He knew I was not having a good go of it. He was not smirking in making fun of me. I just had a funny look on my face and it triggered his smile reflex. Anyway, I managed to control my tummy and sit patiently. Finally the doctor that was going to do the procedure, came over and explained exactly what was going to happen. I had to sign the release form.

Then I was ushered into the operating/procedure room by a nurse. No, I didn't need a gown. No, I wasn't being sedated. The 2 nurses exclaimed over how tall I am and had me climb up on the "table". The one nurse asked me, "Which arm do you want the picc in? I'm not that picky." I started to giggle and then into a full blown laugh. The 2 nurses just looked at me like I'd lost it. Then the other nurse started to chuckle and laugh. The first nurse was looking at both of us with a blank look on her face.....and then she got it! "I'm not that picky." We had a good laugh and I said that was a good one....I'm in for a picc line and you're not that picky. Off I went on a peal of laughter again. It still makes me giggle. The nurse hadn't even meant to make the pun. The nurses were fantastic with me after that. The procedure took a total of 15 minutes and I was done.

After leaving the Imaging Department, hubby and I went to the Tuck Shop to stock up on some Raspberry Flavoured Ice Tea that I like. I had ordered a case of 12 so that it is with me for the next round of chemo. It was great to see my co-worker and the volunteer that worked this morning.

On Monday, hubby and my daughter had bought me some scratch tickets, so I won some more tickets and redeemed them at the Lottery Booth. I like supporting the Tuck Shop, Gift Shop and Lottery Booth because they are run by the Hospital Auxiliary. All the profits are used to buy equipment for the hospital.  Hubby and I dropped into the Gift Shop on the way out so I could say hello to some other co-workers and volunteers that I used to work with.

I had a quiet afternoon with a short nap. All day, I had been looking forward to going out to dinner to our favourite Indian restaurant called Darbar. So that's where we went and I was not disappointed. The food tasted amazing. Although my appetite is still small and I couldn't finish all my meal, it just means that I had some left overs to take home for lunch tomorrow. After dinner, I was still feeling great, so hubby and I went to do some grocery shopping. I intended to go to all the stores, but in reality only made it to one. Now I was tired and I want to enjoy tomorrow again. So hubby dropped me off at home.

Today was a great, great day!! Live life to the fullest and celebrate the great days.

Thursday, 24 August 2017

Day 11 First Chemo Round - Community Care Access Centre & Infections

I did not sleep well last night. My left lower arm has been bothering me since Tuesday (Day 9). This is left over from when the IV was put in on Day 1 of this cycle. Anyway, it is very tender and the pain was keeping me awake last night. By morning, I could see that there is redness and swelling spreading. The arm is very warm to touch. So I decided that I would be making a call to my family physician and try to get an appointment for today. But first.....I had to wait for a phone call from the Community Care Access Centre (CCAC). This phone interview has been scheduled since Tuesday and I had to be available between 9 a.m. and 12 Noon.

I had a lovely little visit with the nurse that called from the CCAC. She was calling to get my background medical information. The CCAC will be helping me to keep my pic line (which goes in tomorrow) clean and maintained. I believe that the pic line will be cleaned weekly and I will have to go to their clinic once a week. The unfortunate part is that the call came later in the morning. I had to delay calling my family doctor to make the appointment until after my CCAC call.

Needless to say, my doctor's appointment was in the middle of the afternoon and I was already tired from not sleeping last night. I'm also supposed to avoid the sunlight. So to go out and travel around the city to get to a doctor's appointment and then to the pharmacy and back home in the hot part of the day was a challenge. I managed to do it but was very, very tired by the time I got back home. This compounded the nauseous feelings that I was experiencing.

My family doctor is treating my arm as an infection so I'm on antibiotics. I'm also supposed to take tylenol as an anti-inflammatory. He also prescribed Nystatin for thrush when it appears. I remember the Nystatin from 5 years ago. I hated taking that stuff but it will heal the thrush whenever it decides to make an appearance.

After getting home from the errands, I wanted to lay down and have a nap to recharge myself. I was really dragging. I had just fallen asleep when the phone rang. Oh yes....CCAC called me while I was at the doctor's office and so I had called them back when I got home. I was expecting them to call. So up I got and ran for the phone. It was a sales call. Grrrrrrrrr.!!! I went and laid down again and then my cell phone rang. Another sales call! Grrrrrrrr!!!! I decided I may as well get up and bring in the laundry off the line. I took the phone outside with me as I was still awaiting the CCAC call.  Just as I opened the door and was about to carry the laundry inside, my husband opened the door and was coming through the doorway! What a scare!!!!!

So tonight, I'm very tired, somewhat grumpy and feeling sorry for myself. Life does not seem fair! It sucks that here I am fighting this terrible disease again. Tomorrow, I will be at the hospital again to have my pic line put in. Let's hope there is no further infection. Let's hope something will finally go smoothly for us.

I believe it is important to acknowledge, embrace and then let go of the emotions that plague me. Today the emotions are sadness, anger and frustration. I recognize that these are not good to hang on to, but they are a necessary part of acknowledging the reality of being sick with cancer again. So I've acknowledged them, embraced them this evening and will now attempt to let them go so that tomorrow is a new day.

I close now as I'm very tired and ready to crash. I'm a little anxious about the pic line procedure tomorrow morning. At least I don't have to fast before the procedure.

Wednesday, 23 August 2017

Day 10 First Chemo Round - Mouth Rinse Solution

After having ice cream last night, I awoke in the middle of the night with what I remember thrush feeling like. I checked my tongue around 2:30 a.m. and noticed it seemed to have a white coating but not the thick coating that I remember from 5 years ago. This concerns me. Five years ago, it took until the 4th or 5th chemo round for my immune system to be depleted enough for thrush to take hold. I'm concerned because I'm there before the first round is finished. Anyway, I went back to sleep after taking a prochlorperazine (anti-nausea pill) and slept through until 7:30 this morning. I awoke feeling refreshed and ready to get going on my day.

My mouth felt a little better and when I checked it after breakfast and showering, it seemed to be improved. I call the nurse, call my family doctor or what?  I chose to call the oncology nurse at the Cancer Clinic. I was advised to start rinsing with a solution of 4 cups of water, 1 tsp. salt and 1 tsp. baking soda. I'm to keep this at room temperature and rinse my mouth 4 times a day. And to make a fresh batch every day. Apparently, the baking soda will help keep the PH balanced in my mouth.

I had a very productive day today. Five years ago, I had a general plan for my funeral in place but not any details. This time around, I'm making sure the details are also in place so my hubby will never have to deal with that. Having  said this, it does not mean that I am giving up. No way!!! But you never know and I want to make life easier for my family if something terrible happens. Meanwhile, I'm still fighting and kicking all the least this week. So I made some contacts with friends and am in the process of setting some things in motion.  In addition to calling the nurse, as mentioned in the previous paragraph, I needed to make an appointment with my pharmacy's pharmacist. I needed to do this in preparation for my first appointment with the stem cell doctor coming up in September. I made the appointment to meet the pharmacist tonight. We went over my current prescriptions and updated some of the supplements (the herbal tea my friend gave me, mouth sprays, etc.) that I'm now taking or using.  Tomorrow, I have to contact my family doctor regarding the thrush question.

In addition, today I was clear headed enough to handle some banking and to get things organized for grocery shopping which will take place tomorrow. Who would have thought that I would have trouble keeping organized?! The stress of this treatment, the diagnosis and the flurry of appointments makes it difficult to keep things straight. At least for me.

Not only was I productive, I managed to have time to do some knitting on my afghan project and to all do some reading outdoors in the late afternoon. What an enjoyable afternoon it was. The weather was warm but not too warm. The birds were busy at our bird feeder but so was the squirrel who was stealing the bird seed. I enjoyed the time on the patio with my book, a cup of tea and my cat.

As  a reward for such a great day, hubby and I treated ourselves to some flavoured popcorn from the mall and went home to eat it while we watched the Toronto Blue Jays play the Tampa Bay Devil Rays on television.

Here's hoping tomorrow is another good day. Today I almost felt "normal" and "healthy".

Tuesday, 22 August 2017

Day 9 First Chemo Round

Today has been a good day. I was awake until 2:30 a.m. (Monday night) due to the Dexamethasone that I had to take yesterday at my chemo session. It revs up the brain and so I spent some time organizing pictures and music on my computer.

The nausea has been kept at bay today by using the Prochlorperazine (supplemental nausea drug) but also by using a herbal tea that a friend dropped off yesterday. I'm cautiously optimistic that this will work over the next few days because I did not need to have the drug every 4 hours. It was already able to be extended. The tea also meets the requirements for liquid intake.

Today, I was restless. I wanted to be productive. I started organizing some of my "things" and then decided that my shrubs in the front garden needed a good trim. I was compromising in that I wouldn't rake all the trimmings up. I'd just put them back in the garden for compost. I got most of it done and ran out of energy. Oh, oh.....hubby is going to be some upset with me for doing this. Hmmmmm...... Then my neighours came home and while visiting with them and sitting on the ground to rest, my neighbour came over and finished the last shrub. We agreed that we would tell hubby that my neighbour did it all. I confess that I can't lie without feeling terrible about it. So while we enjoyed our dinner (which a good friend had made from her garden and froze for us), I confessed what had gone on. Of course, hubby had come home from work to find me vacuuming the kitchen floor. I believe his words were "I caught you!".

After much discussion, it was agreed that I can do some cleaning but not to totally tire and wipe myself out. Hubby recognized that I was bored today. I did manage to get all my liquid intake into me. The Liquid Intake Journal is helping me to track that. After dinner, we went for ice cream where I can justify that it had nuts and raspberries which will help to boost my white blood cells.....forget the other empty calories (smile). After our ice cream, we went for a lovely drive and discussed the vortex of emotions that we're experiencing.

Things happened very quickly this summer and we're both still dealing with the reality of the diagnosis at the same time as we are handling the treatment and side effects. It's a little overwhelming and hard to process. Tonight was a nice change.

Monday, 21 August 2017

Day 8 First Chemo Round - Gemcitabine

So I had to arrive at the Cancer Centre for 11:00 a.m. in order to have my blood tested. My chemo was due to start at 1 p.m.  I arrived early so that I could drop by the Tuck Shop where I have worked and am currently on sick leave. It was great to see my co-workers and the volunteers that I've worked with! My daughter was with me today. I was so proud to introduce her to the people I know.

Five years ago, my daughter was in Grade 9 and wanted to spend a day with me back then while I underwent chemo. I did not allow her to miss school to do that. Today, she came as an adult and recognized that it is a long and somewhat boring day. She was glad that I had some sudoku puzzles to help her pass the time (said with a smile). I was so happy to have her support!

When I was finally called in to the chemo lab and directed to my chair, I was told that my neutraphils were low. The chemo may not happen. What are neutraphils?! I never really did find out until after I got home and looked it up. Neutraphils are your white blood cell count. If it's low, then the risk of infection is greater.  The blood work also showed that I was dehydrated from my nausea. On top of all that, I was supposed to take 2 Dexamethasone pills before starting the Gemcitabine. The Dexamethasone pills are the ones that dissolve going down and contributed greatly to my vomitting last week.  After much consultation with the doctor, the pharmacist and my chemo nurse, it was decided that I could go ahead with the chemo. We got the Dexamethasone pills into me using yogurt to help slide them down my throat. I felt like my cat must feel when we have to give him pills! The Gemcitabine was injected along with a saline solution to hydrate me. What I expected to be a 1:00-3:00 duration in the chemo lab ended up being 1:00-4:00 p.m. However, the good news is that it got done. I'm done now until Day 1 of the next cycle. I'll just have to see what side effects are going to occur this week.

Hubby, my daughter and I all went home to eat some supper and then celebrate by going out for an ice cream cone. Did you know that ice cream can count as a liquid?! Bring it on!!!!  I decided that I will start a liquid intake journal so that I can track whether I'm getting my full 8 glasses of liquid a day. Also after getting home, I decided to research what foods will help the neutraphils raise their numbers. I found a website that I will be using to create a grocery list so that I have these foods on hand. Knowledge is power! We fight this disease with knowledge and power.

I also found out today that on Friday, I will get my pic line. That'll be easier on my veins....not so much pricking and less scar tissue on my veins.

Overall, it was a good day.

Sunday, 20 August 2017

Day 7 First Chemo Round

Well, after 2 days of feeling absolutely miserable, I had a good day. I awoke about 7:30 a.m. due to my cat wanting to be fed. I got up and was feeling a little queasy as I fed him.  Was it queasiness or emptiness due to hunger. The difference being, the thought of toast, butter and jam didn't make me want to run for a washroom. So I tentatively had some toast and jam and then went back to bed. I awoke again and was hungry so this time, I had some turkey broth. Two hours later, I had some Mr. Noodles (aka chicken ramen noodles). My hubby made some bran muffins and I had half of one. It stayed down. Over the course of the afternoon, I realized that when my stomach was feeling unsettled, it was more that I was hungry. So I had another full bran muffin and then some more chicken Mr. Noodles to tie me over until dinner time.

Hubby even decided to try to make my water a little more palatable by adding a bit of Lemon Iced Tea mix. Just enough to remove the chlorine taste. It worked!

I have had a good day. I even had a small second helping of Shepherd's Pie at dinner. We'll see how that all sits.

Thank you for all your thoughts and prayers. It has helped and the sun has shone on me today. It's been a good day!

Day 6 First Chemo Round

This will be a short post. Nausea, nausea, nausea. I am struggling to drink fluids...they all taste like chlorine. The thought of food makes my stomach roll. Scared. Afraid of being dehydrated. Terrified of Monday's next dose of Gemcitabine.

Friday, 18 August 2017

Day 5 First Chemo Round

I had a much better sleep last night and as a result, I awoke feeling much better. I decided to start with a piece of toast for my breakfast because I have to have food before taking my morning meds. Everything was going well until time to take the Dexamethasone pills. These are tiny white 5-sided pills and I have to take 10 of them. These dissolve as they go down the throat. Once those pills are gone, then I have to take my Allopurinol to help clear the kidneys of the cancer cells. I took them this morning. The good thing was the water tasted better this morning. Bad thing....I had to run for the washroom and lost all my breakfast and the pills. I have no more Dexamethasone to take. My stomach is grumbly from the upset.

However, on the upside, I am still feeling better than I did yesterday. I'm just a little hesitant to add food or water or anything to my stomach. I still like my turkey broth so this morning around 10:30, I heated some up to help settle my stomach and get some nourishment.

I spent time this morning responding to emails and comments from the last couple of days when I didn't feel so good. My mind is a little more alert today than yesterday. I even worked on my knitting although I was struggling to follow the pattern. Maybe I'm not as alert as I thought today. I finished the book "Firefly Lane" today. I was a little restless and tired of working on Sudoku and crossword puzzles. However, the stomach was still a little roly poly.

Another good thing was at supper, my hubby brought home Indian food. This is our Friday night tradition although we normally go to the restaurant and enjoy the meal out. We had planned to have the food brought in tonight. All day, even with a sensitive stomach, I was looking forward to my Mulligatawny Soup, a little bit of naan bread and maybe trying some of the Darbar Rice and the Mixed Vegetables. Just before hubby arrived home, I was concerned that I might not be able to handle any of the mild food as my stomach was rolling. It was just a sign that I was hungry. I enjoyed my soup but left some for lunch for tomorrow. I enjoyed a tiny bit of rice, mixed vegetables and naan. I was full but so happy that I was able to enjoy the taste and the food stayed down.

So overall, today was a better day. I still have to make sure I'm drinking lots of liquids to flush out the kidneys. That has been a bit of a challenge but with the nourishment of soup and broth, I think I'm meeting my 8 glasses a day. Today I also had some juice boxes. The water still wasn't as good as I normally enjoy it. Maybe I'm just getting tired of water.

So here's hoping that I'm on an upswing for the weekend. On Monday, I'll be going for the last of my chemo for this cycle. I'm trying not to think about it and just enjoy my weekend.

P.S.  I took my anti-nausea supplemental pill at 8:30 like always and then I lost the battle with the nausea at 10:30. So now here I am at 12:54 a.m. after having taken the next pill at 12:30 and hoping I can keep everything down.

Thursday, 17 August 2017

Day 4 First Chemo Cycle

Last night when I posted on Day 3, I spoke a little too soon. The nausea has arrived. I did not sleep well. The Prochlorperazine lasted just 4 1/2 hours so I was awake at 2 a.m. with a rolling stomach. I got up took the next dose as I am allowed to take them every 4 to 6 hours as required. It took until 3:30 or 4:00 a.m. before I was able to settle back down in bed to sleep. I was so tired! But the stomach would not let me lay down.

I don't know if it is because I'm more tired but this morning it was a struggle. But...on the bright side, my son came home last night after I was in bed (about 11 p.m.) and so I enjoyed some really nice time with him this morning. It was OK to just be in the moment with him regardless of how I was feeling.

The rest of the day pretty much was the same. I am not hungry. Water tastes like straight chlorine. I tried my ginger tea, but it also tasted like just chlorine. I had some turkey broth at lunch which was OK. I did manage to get a juice box into me. The taste buds seem to be off along with the nausea in full bloom. I slept and read, slept and read today. I couldn't concentrate to do any puzzles or do much surfing on the computer.

Hopefully tomorrow will be a better day.

Wednesday, 16 August 2017

Day 3 First Chemo Cycle

Last night I tried to be proactive in fighting the side effect of constipation with is associated with a number of the medicines that have been pumped into me. I took a dose of Senokot last night as per the directions on the package. At 4 a.m. my insides started to gripe a little, so I was up and ready until about 6:15. After feeding my cat, Frodo, and changing his water, I went back to bed. I slept right through until 8:15 when my hubby woke me up to take my next chemo meds. With my breakfast, I had to take 1 Allopurinol pill and 10 Dexamethasone pills. The Dexamethasone side effect on me is my mind races (more than usual) and my speech speeds up. I had to apologize to anyone I spoke to today as even I noticed I had a "running mouth". Anyone who knows me when I've had multiple cups of coffee, has witnessed something similar. The side effect of the medication is worse. At least I was able to laugh about it and recognize what was happening. Thankfully, the people I was talking to on the phone, regarding various upcoming appointments at the Cancer Clinic, were very understanding and able to chuckle along with me.

I sent my hubby back to work today. I am at home for the next number of days and today, I felt like I could take care of myself.  My appetite is slightly off due to the nausea. I find that eating smaller, lighter meals has helped. I still have to drink 8 cups of clear liquid or more every day to flush out the kidneys and help flush the chemo meds out of my system.  I made my oatmeal this morning and found I could only eat half of it.  I had no interest in snacks of any kind. For lunch, I had some of my turkey broth with a piece of toast and more water. I had water throughout the day and also some juice boxes. I was starting to get tired of water.

I passed my day doing some knitting, to keep my legs warm. I was feeling cold for most of the day. I had a very nice visit on the phone with my minister. I read outside in the shade of my front porch for a little bit until the sun came around. Then I moved to the patio in the back where there was finally a strip of shade that would fit my chair. I got tired of reading and would get a headache and be tired. But due to the revved up mind on the Dexamethasone, I would go on the computer and surf the internet looking up information on stem cell transplants. When I came across information that was a little disturbing, I then went onto Facebook and surfed for a bit. While on Facebook, I reconnected with a friend that I had lost contact with. It was nice. Later about 3 p.m., my stomach started to feel queasy again, so I had some toast and jam. That settled it down. I worked on some word puzzles and did more knitting. Then it was time for supper and again, I only wanted turkey broth. It tastes good to me right now.

After supper, hubby and I went for a short walk around the block. We were considering going further but I was afraid of getting tired before getting home again. So we cut the walk short and watched the Blue Jays game on TV.  Just as we were leaving the house to go for our walk, there was a FedEx box leaned against the side of the door. It was from my sister!! I brought it inside to open up after our walk.

So when I got home, I opened up my "care package". My sister was so thoughtful!! She sent me lip balm for when my lips will dry up due to the chemo. She sent me intensive dry skin repair hand cream, knowing that my hands will be dry from all the hand washing and hand sanitizing that has to take place at the moment. She even thought of sending a moisturizing mouth spray, knowing that I will have dry mouth! She sent candies to share with my hubby and she also sent some books that she had just finished reading! I'll keep them to return to her for my nieces to read. This was a real lift today!! I have always adored my little sister and we live so far apart that we don't get to see each other very often. I called her tonight and we had a really nice conversation. It looks like we might even get to see each other at some point during my treatments!

Overall today went well. I haven't had to take the supplemental anti-nausea meds called Prochlorperazine. The Dexamethasone is supposed to help combat the nausea. So we'll see how tomorrow goes. I may take the Prochlorperazine as a precaution before bedtime tonight. At this point, each day is a new experience in the chemo cycle. I feel I handled Day 3 well.

Tuesday, 15 August 2017

Day 2 First Chemo Cycle - Gemcitabine, Dexamethasone, Cisplatin

I didn't sleep well last night. I'm still experiencing the abdominal pain that has plagued me since April although it is getting worse. I arrived at the Cancer Centre at 9 a.m. and was immediately showed to my "chair". As always, they started off with a saline solution to clear my vein and intravenous site. The nurse also gave me the "little yellow football pill" which is Ondansetron to help combat nausea and vomiting. Then, the nurse hydrated me in preparation for the Gemcitabine, Dexamethasone and the Cisplatin. I felt really good during the process today. I was able to joke with the nurses and various employees walking by who recognized me from my job in the Tuck Shop. Some were shocked to see me and spent some time visiting. They had not realized that this was a relapsed lymphoma for me.

I was in the Cancer Clinic from 9 a.m. through to 2:30 p.m. What a compliment it was to have my nurse celebrating that she had me for a patient today. After talking to some of the other nurses in the chemo lab, she realized that she recognized me from the Tuck Shop. The other nurses were envious that she was assigned to be my nurse today. My nurse from yesterday stopped by numerous times to check on me. Two of my nurses from 5 years ago recognized me and stopped by to visit and check on me. It was a day of warm support and caring. I was very impressed and it made my day go well.

When I left at 2:30, I was feeling so good that I was considering going for a walk with my hubby tonight. While I awaited for my hubby to come by the main doors to the Cancer Centre with the car, one of the volunteers working the information desk came over and gave me a big hug. She has worked with me in the Tuck Shop since June. She was so happy to see me and indicated she had been given the address for this blog. I encouraged her to follow along.

After I got home, I rested and read for a little bit. Around 4:30-5:30, my stomach started to ache and I was starting to burp frequently. It was too early to take my next dose of Ondansetron so I took my supplemental nausea medication called Prochlorperazine. This should help calm the stomach until about 8:30-9:30 when I can take the Ondansetron dose.

Needless to say I did not want to eat very much supper. I had one small barbecued chicken thigh and 2 small pieces of roasted potato. As I was finishing my supper, my hubby made the comment that I was looking very tired. I was feeling cold and I continue to feel like my body is sliding downhill. I did take my temperature as I have to be very aware of fevers which can occur within hours or up to days after the injection of any one of the "medications" Gemcitabine, Cisplatin or Dexamethasone. My temperature was normal. So I just added a sweater and put on some long pants even though the heat outdoors is quite warm.

Now I intend to watch some television and do some knitting. I'm working on an afghan and it is long enough now to help cover my legs. I'll stay up long enough to get the Ondansetron into me and then I'll head to bed and rest.  I do not need to go back to the Cancer Centre until Monday when I will have a shorter day there while Gemcitabine is put into me.

Overall, today has been a good day with lots of laughter and friendship. Certainly, I was feeling blessed because I did see people who are further along in their cancer treatment journeys and not doing so well. Here's hoping and praying that I will keep my blood counts up and not need transfusions or delays to my treatments. But today was a good day.

Monday, 14 August 2017

Day 1 First Chemo Cycle

I had an early start to the day because I had to be registered at the Cancer Clinic at 8:30 a.m. I started my day with a bowl of oatmeal and my Allopurinol which needs to be taken with food. Then off we went to the Clinic to start my first day of chemo. I knew what to expect because I had the Rituximab 5 years ago when I had chemo.

Because I had a reaction to the Rituximab 5 years ago, they gave me Benadryl pills to take along with some tylenol before they started the IV. The first bag emptied in through my IV was hydrocortisol followed by a saline solution and then the Rituximab. Just like 5 years ago, the nurse started the Rituximab slowly at 20 ml per hour and then this was raised by 20 ml every 30 minutes with the hope to get to 200 ml per hour. We got to 60 ml per hour and I started to feel some itchiness on my left ear and on my scalp. I remember that this is what happened 5 years ago when we first had the Rituximab. I let the nurse know and because I didn't have any visible hives, we continued and bumped up the drip to 80 ml per hour. Then a few hives showed up near my hip. I rang for the nurse and she was immediately there. She stopped the drip and then put a bag of benadryl in to combat the allergic reaction. Once it was finished, I was feeling very sleepy but the itchiness was less. Then another bag of saline was entered into me. Once the hives were totally gone, we started again slowly with the Rituximab. The nurse adjusted the drip back to 40 ml per hour. This time, we were successful and managed to get the drip increased to 100 ml per hour which finished the bag.

I was at the Cancer Clinic about 6 1/2 hours today. I returned home by 4 p.m. The only side effects I seemed to have was tiredness and feeling cold. So I went and had a nap. When I awoke around 6, I had a bowl of turkey soup. I wasn't very hungry. Then a very good friend from around the corner contacted me and I asked her to come by for a visit. What a nice evening it was!!

So now I gear up for another 6 to 8 hour day tomorrow. This is where the unknowns are. I haven't had the Gemcitabine or the Cisplatin and so I don't know what to expect. I know that in the morning before going to the Cancer Clinic, I'll have to have some food to take the Allopurinol. Then I'll go to the Cancer Clinic and have the two medications put in by IV. The IV was kept in my arm today so that I didn't need to poked again tomorrow. They'll just attach the IV tubes to what's already in my arm. Then tomorrow night, I'll take one pill of Ondansetron for contolling the nausea that will happen in response to the 2 IV meds. From what I understand, I will lose my hair in subsequent rounds of chemo as it is a side effect of these meds.

I hate being nauseous and sick. Always!! So I hope that we can keep it in check. I'm sure that my taste buds will be affected. This will be the challenge. Then I will have other pills to take starting on Wednesday. The prescription for these was filled today at the pharmacy at the hospital.

I'll make sure tomorrow, I have my puzzle books and the novel that I'm currently reading with me to help pass the time. Of course, my hubby will be with me and we'll be able to commiserate together. I do know that my nurse today mentioned that she is working again tomorrow. She is very nice and was somewhat talkative although she was very busy. It'll be nice to see her again tomorrow.

I have to say that everyone's love, support and prayers has helped lift my spirits today. Thank you for that. In the end, that's what is important in, friends and love.

Sunday, 13 August 2017

Getting ready to start my R-GDP

Yesterday, I took my turkey carcass from our Christmas dinner out of the freezer and boiled it all day to make turkey broth. As has been the norm for the last couple of weeks, I slept badly last night. It doesn't matter what position I lay in, I'm in discomfort. I took 1000 mg of Extra Strength Tylenol around 1 a.m. to help. It barely touched the pain. Finally around 3:30 a.m. I fell asleep. My cat, Frodo, jumped up on me at 6:43 a.m. to let me know that it was time to feed him. So I jumped out of bed, changed Frodo's water and fed him. Then I went to the fridge and took out the large soup pot that still had the turkey carcass and I separated it all. I froze some turkey broth so that when I have days that I don't feel well, I can at least have some broth. Then I made turkey soup and let it simmer all morning. That will be my dinner tonight and if there's some left over, I will freeze it for meals later on.

After all that was done, I got my laundry done. I wanted to get everything ready for the week. Chemo starts tomorrow, but I still had to take one tablet of Allopurinol this morning in preparation for the chemo. This pill will help my kidneys process the cancer cells. It needs to be taken with food, so I had it with my breakfast.

Hubby and I decided yesterday that today we would go out on the Honda Goldwing. We refuse to let the cancer take one more day from me before it needs to. So out we went for our annual jaunt to Westport, Ontario. We love this village! At least once a year, we go to The Cove Inn for lunch. So that's what we did. I wasn't really hungry but again, I don't want to give in to this cancer. I had Beef Dip Au Jus. At one time, a meal like that would be perfect for lunch. I struggled to get through it, just because my stomach often feels full and if I overeat, then I struggle with pain in the abdomen. After our lunch, we hopped back on the bike and took some back roads over to Perth. Then I had to admit to my hubby that I was tiring fast and needed to head home. We enjoyed the ride home and I, as always, enjoyed the scenery.

After a long nap, I awoke and realized I needed to bring in the laundry off the line and get our turkey soup heated up. I wasn't hungry, but again, I forced myself to eat a bowl of soup. Who would have ever thought that I would have to force myself to eat?! Me....who used to love food!! Now my response to food is ... meh.

So after supper, I got my backpack out and loaded it up for the ordeal of chemotherapy tomorrow. I will be there for 6 to 8 hours as Rituximab is pumped into me. So in went fig bars, chocolate covered almonds, chocolate covered raisins and  gummy juice snacks. Then went in the puzzle books and a book I'm currently reading. The anxiety just reared its ugly head and I was overcome with anger and frustration. This isn't fair!!! This SUCKS!!!!  I feel like I'm on a train and I can't get off. It's rolling along down the tracks closer and closer to this dreadful chemotherapy journey. I'm afraid of the side effects on my body. I'm afraid of what's going to happen. But I really don't have a choice. I need to do this.

My bag is packed and ready to go first thing in the morning. Now my evening lies before me. More anxiety. More pain. More sleeplessness. I will try knitting, reading, doing crosswords, sudokus and playing on the computer. Just putting in time. Waiting....waiting......

Saturday, 12 August 2017

Follicular Lymphoma and My Chemotherapy

After getting the diagnosis on Wednesday, I chose to finish my work week at my part-time job. I needed the distraction from my health reality. I said my good byes to my co-workers and the volunteers I worked with yesterday. It was a very hard end to the week. Last night, I was restless. I couldn't sleep, I couldn't concentrate to read or do knitting or any of the sudoku/crossword puzzles that usually help calm any anxiety. Nothing is working.

My eyes are gritty and I feel like I need a good cry. But the tears won't come. I'm terrified! So I've taken time this morning to look over the pamphlets describing my chemo regimen. To be informed is supposed to help, I think. But still very restless.

My chemo cycle this time is 21 days times 4. Each chemo cycle is 21 days long and I will ahve 4 treatments. On Sunday, I will start with a pill form of medication called Allopurinol. This will help my kidneys break down the cancer cells as they are released into my kidneys during the cycle.I will start on Monday (Day 1) with only one "medication" being put into me intravenously. I had this one in my last chemotherapy in 2012. It's called Rituximab. On Monday, it will take anywhere between 6 to 8 hours to get it into my system. Tuesday (Day 2) I will have 2 "medications" put into me intravenously. They will be Gemcitabine and Cisplatin. My next medication will be Dexamethasone (like Prednisone that I took in 2012) that I believe I will be taking Days 3-6 (Wednesday to Sunday). I'm not 100% sure on the dosing schedule for the Dexamethasone. I'm sure I will find out on Monday (Day 1). On Day 8 (Monday, Aug. 21), I will have only the Gemcitabine put into me intravenously. Then I just recover and ride the roller coaster of side effects until Day 21 where I will take the Allopurinol again and we start the cycle all over.

It is the possible side effects of the chemotherapy that really scare me. I've had the Rituximab before so I know what to expect (chills, tiredness, nausea, and headache). The Gemcitabine commonly causes anemia, nausea/vomiting, hair loss, tiredness, headache and diarrhea. Losing my hair doesn't really bother me. I still have some of the toques from last time and I just bought some really nice and easy to use head coverings. The diarrhea side effect may counteract the side effect from the anti-nausea medication (Ondansetron) which really gave me constipation last time. The Cisplatin possible common side effects include ringing in the ears/hearing loss, kidney problems, salt imbalances and neuropathy (tingling/numb toes or fingers). The Dexamethasone commonly increases risk of infections (combined with the anemia from the Gemcitabine, this scares me!), nausea, heartburn, stomach irritation, trouble sleeping, mood swings, increased appetite (might counteract some of the other meds' side effects), restlessness. The doctor already warned me that the Dexamethasone could act like the Prednisone the last time. It revved up my mind so that I remember being very tired and laying in bed but not able to sleep because my mind was racing. So don't be surprised to see posts in the middle of the night while my brain is crazy and active.

All the pamphlets say to drink plenty of water to help flush the system. I always drink lots of water but I will make sure that the glass is always full beside me.

Now I remember why I liked to post in my blog. Just the act of going through all the pamphlets and putting my thoughts and fears in written form has helped to calm me. I'm still scared but inside I, currently feel a little less restless. Now I'll go on with my day which includes mundane tasks like cleaning and grocery shopping. I'll be picking up foods, snacks and drinks that I can have with me on Monday for the 6 to 8 hour time in the chemo lab. I'm also making some turkey broth for later use. I'll probably make some turkey soup tonight or tomorrow morning.

Friday, 11 August 2017

Celebrating each day of health and then BAM...."I'm Baaack".

So I haven't posted on the blog in over a year. That's because I have been enjoying my 25 hour per week part-time job at the local hospital and teaching approximately 4 1/2 hours per week. I have continued to volunteer at the hospital. It makes me feel good. In my spare time, I've been living life to the fullest by going hiking and geocaching (a GPS treasure hunt) and riding on the back of my husband's Honda Goldwing. Life is too short to spend sitting on the couch.

I lost weight due to the activity in my job and then my weight became stable. I've been in the best physical shape than I've been in years. In November 2016, I started to lose weight again. I wondered why, but didn't really pursue the reason. Who complains about losing weight?! Especially when I've had a tendency to be slightly overweight throughout my life. At Christmas, I noticed that the Christmas dinner didn't sit very well with me. I put it down to the heavy meal and that I'm not used to eating so much. I've been eating healthier over the last year. I ate lots of chocolate and goodies over the Christmas break while visiting family. When I got home, I weighed myself and noticed that I hadn't gained any weight. Woo Hoo!! Right? Then I noticed some small changes in my digestive system. Little aches here and there and changes in bowel movements. Hmmmm.....well, maybe I'm just getting older. I noticed the night sweats were a little more often again but put it down to menopause. My hands have started to ache and the knuckles are changing. I made a note to mention all this to my family doctor at my upcoming physical.

At the end of April, I went for my annual visit to my family doctor and mentioned all these things. The ache in my abdomen was more constant starting about mid April. My doctor sent me for an abdominal ultrasound and the results showed a large gall stone in my gall bladder. There's the source of my abdominal pain, I thought. My doctor then referred me to a GI Specialist for a consultation. On June 6, he poked and prodded my stomach area and declared, "Where you have pain, is not where the gall bladder is. I'm sending you for a CT scan." I let him know who my oncologist is and that I would be seeing him for my annual appointment the next day. OK, I thought, no big deal. I've had a number of CT scans.

On June 7, I met with my oncologist at the annual appointment and told him what was going on. He felt around but couldn't feel any lumps or anything. This is good news! After telling him about my appointment the previous day and that I was being sent for a CT scan but it wasn't scheduled yet, he said "That's good. I'll await the results." He set up another appointment for me in 2 weeks time. This was all at the beginning of June. The next day after seeing my oncologist, I received a call to come for a CT scan that afternoon (June 8). I went.

I continued to work, finished teaching my students for the school year, organized their recital and continued enjoying life. The difference being that my abdomen is constantly aching and I'm relying on extra strength Tylenol to manage it. On Monday, June 19, I came home from work to find a message on my voice mail at home. It was the GI doctor himself asking me to call him. I called him the next morning while at work and left a message on the voice mail.  When I had another break in my morning, I called again. The GI doctor's admin. assistant answered the phone. When I told her who I was, she said "One moment please, he wants to speak to you." The doctor came on the phone and let me know some concerns showed up on the CT scan. He wanted to set up an appointment for an endoscopy ultrasound/biopsy. I said OK. It was set up for the Friday, June 23, just 3 days later. This concerned me because of how quickly the procedure was booked. My mind told me this does not bode well for me.

Meanwhile,I saw my oncologist the next day (Wednesday, June 21). I had my husband come with me to this appointment. The oncologist let me know that the CT scan showed 3 enlarged lymph nodes that are a concern. One was 4 cm in length and looked like it may be part of my pancreas. There were 2 more lymph nodes, one measuring 3 cm x 3 cm and one measuring 2 cm x 2 cm. Hence the scheduled endoscopy to see what is growing inside of me.

While all this is going on, my daughter was coming home to have 4 wisdom teeth removed. I had taken the Thursday off to "mother" her and monitor her after being sedated. I was now having to take the Friday off as I was being sedated in order to do the endoscopy and biopsy. Thank goodness, our daughter was out of it and didn't ask questions. My husband and I decided not to tell anybody (our children, family or friends) until we had confirmed information to tell. Unfortunately, I did have to tell my manager as I was taking all this time off for appointments and my husband had to tell his managers because he had to leave an important time in his business as well. The good news about the endoscopy was it showed it is not my pancreas. It does seem to be just the lymph nodes. There was not enough cells to determine a diagnosis, so I am now awaiting for another CT scan (full length from throat down to the bottom of the pelvis) and another biopsy procedure called IVR to be scheduled. I am also awaiting a scheduled colonoscopy.

I always said that waiting and the unknown are the hardest. Your mind is distracted. I can't read for any length of time. I'm not sleeping. I've tried to knit but again, I can't concentrate for any length of time. So my husband and I have been walking, going for rides on the motorbike and sitting outside on the patio. We've been trying to enjoy spending time with friends. I've been relying on all my "tools" that I learned from my last bout with cancer to keep myself sane. It's hard to continue to act "normal" when you know something is growing inside of you. The "What Ifs" are in full bloom and my imagery of the closet in my mind isn't working. The closet seems to be full and I can't slam the door shut. All the "what ifs" are falling out chaotically in my mind..

I bumped into my oncologist on Friday, July 7 in the hallway at the end of my workday. I chatted briefly with him about my anxiety levels. Of course, he is also in wait mode with me. He did mention that when lymphoma relapses it doesn't come back as the original sub type of lymphoma. It comes back as a different one. This is why we need another biopsy so that he can correctly identify it and plan the correct treatment for it. My oncologist is Dr. David Lee. He is so caring and compassionate. I have been blessed again with a wonderful doctor.

While awaiting the next CT scan, my husband and I have started to look more seriously at the details for my Celebration of Life/Funeral. Some of these details were already planned 5 years ago but others were not. Now is the time to keep the mind busy and finish the job. My husband and I have also been struggling with when do we tell the children and our family and friends about what we are dealing with. We again agreed that no phone calls would take place until I have a full diagnosis and treatment plan that I can share with people.

I received the appointment for my CT scan and it took place on Wednesday, July 12. The next day, July 13, my oncologist dropped into my workplace and asked to speak to me privately for a few moments. The CT scan showed just the 3 tumours but they are bigger than they were on June 8. This cancer appears to be aggressive. In the hallway outside my work, I signed the permission form for the IVR. In the following week, I will have my only week of holidays. Our plans have been adjusted so that I am able to return to the hospital if required. On my last day of work before holidays, I was given the date for my IVR. It will be done on Friday, July 21. The good news about this date is that I will be able to go away for 5 days on the back of my husband's Honda Goldwing and have a holiday before my world gets blown apart with a diagnosis, staging, prognosis and treatment plan.

I continue to have sleepless nights due to an active brain, constant pain in my abdomen and a bladder that seems to need to be voided more often. I suspect something is pressing on it. Again, the waiting and the unknown are the most difficult part of this so far. So we planned a last minute holiday to ride the Goldwing down into New York State. What a great holiday it was. Although cancer is in the back of our minds, we enjoyed the ride, the great weather and got to see the Syracuse Chiefs and Binghamton Rumble Ponies play ball. We saw 6 ball games in 5 days. My hubby was also so considerate and we went to visit the Animal Adventure Park near Harpursville, NY. I had watched April the Giraffe in March and April through the Giraffe Cam and witnessed April have her calf, Tajiri. It was great to see them in person but I thoroughly enjoyed seeing all the exhibits at the park. It was a bright, sunny and hot day. This holiday was a really nice getaway from the concerns that were always in the back of our minds.

We arrived back home on Thursday, July 20 and then I went for the IVR on July 21. The biopsies were taken and then we were back to waiting. Again, as I recovered from the small invasiveness of the procedure in my abdomen, it was difficult to keep my thoughts from the "what ifs". Again, I started to question whether to tell my children and family but then reconfirmed in my mind that I need to wait until I can tell them exactly what kind of lymphoma I have and what the treatment plan is. Once I have that information, hubby and I will be busy on the phone informing family and friends of the return of the lymphoma. I will have to contact my remaining students and let them know that I will not be teaching in September.

On July 28, as both my children were calling and it is sometimes difficult to reach them, hubby and I decided to tell them the information and procedures that we have gleaned in the last couple of months. Needless to say, they were both shocked and need to process the information. However, they were glad that we let them know. Now we can keep them in the loop and a little weight is off my shoulders. The plan is still to tell the rest of our family and friends after I have a diagnosis and treatment plan. Waiting is the hardest....the unknowns are difficult. I have to refrain from using Dr. Google.

Knowing that "Dooms Day" is coming up within the week, hubby and I decided to use our long weekend and hop on the motorbike. We left home on August 5 and went to Alexandria Bay, NY for a few days. What a nice interlude this was!! Hubby was hoping that we could just forget about the cancer for a few days. Little did he realize how much it hurts me. I can feel the tumours in my abdomen when I walk (as they get jostled about). Although you can't physically see them, they are large enough that when I try to sleep at night, I can't find a comfortable position with no pain. Hubby hadn't seen me struggle with fatigue or breathlessness as the month of July advanced. On this long weekend interlude, we visited Boldt Castle in the 1000 Islands. What a lovely afternoon it was, but it brought home to my husband the reality of what's going on inside my body. We had to stop numerous times to sit on benches because I was too fatigued to go on. As we climbed the stairs in the castle, he saw me become breathless and again having to find a place to rest before going on exploring the finished areas of the castle. Having said all this, it was still a really nice time away before "all hell breaks loose" in the next week.

On August 9, I met with my oncologist (hubby in tow) to hear what the diagnosis is.  I have Follicular Lymphoma and will start my chemotherapy on Monday, August 14. I will have 4 treatments of chemo (21 day cycle for each treatment) and then if the chemo has been deemed successful, I will have a stem cell transplant using my own stem cells. Apparently, this chemotherapy will be much stronger, harsher and aggressive than what I've had before. It is expected to be much harder on my body, blood counts and there is the very real possibility of infection. What a lovely anniversary gift to give to my husband.....our anniversary is Aug. 10. So here we go. I AM TERRIFIED!