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!

4 comments:

  1. You are a strong, beautiful woman, mother, wife. Your time is not done on this earth Cathy. You have so much to give, share, love, to teach us. I know there are many people who love and support you. I am here anytime my friend! To laugh, cry, vent, curse whatever you need to do to fight this! I can not imagine what this is like. I have to say I have cried alot since I found out. Please know I am praying for you and sending positive thoughts....
    Love you my friend...I know you will fight this every step of the way!

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  2. I am so saddened to hear this news. What a heavy burden to carry for so many months without sharing it. You & you family are in my thoughts and I'm rooting for you! I'll especially be thinking of you on Monday. Lots of love!!!

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  3. I am so sorry about all this, Cathy, and very sorry that you have carried this inside you for so long. You have a lot of friends and family members that love you and will support you through this. You are in my thoughts and I am wishing you all good things!

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  4. Sending my love and support. Keep up your strength what a fight you have to go through. You are winner keep that in mind. You are in my thoughts. Majka

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