Worry, Fear, Exhaustion but Still Grateful

January is a tough month. I’m not one to dwell on what was and feel sorrow on specific anniversaries but for some reason this year was hard. I think I expected to be all better by now. January 25th marked 2 years that I have been fighting. I fight everyday. Maybe not to kill cancer with chemo but to get through my day. I spend many days in bed. I try to get going but my body doesn’t let me. I force myself out to do things I enjoy that don’t require a lot from me. That’s why you will often see me cheering on some sort of Credo sports team. I find a lot of joy in watching my kids .

There have been some new worries. Although my bloodwork looks fairly descent, there have been some physical ailments that have been on my mind. The pain in my wrists and fingers and hips can be rough at times. I saw a rheumatologist this week and she is suspecting tendinitis. I also saw a dentist at oral oncology yesterday. I have some white patches on the roof of my mouth and we aren’t sure what it is. It’s been there for a while. Yesterday a biopsy was taken and I should find out what it is in 2 weeks. It’s a pretty painful spot for a biopsy. Ouch! In the meantime I have a nasty cold bug. It seems to be in my bronchial tubes and makes it hard to breath at times. I am hoping my body can fight it in its own. I woke up this morning with swelling and pain under my left ear and jaw. Probably a lymph node from whatever virus I’m fighting. If it doesn’t go away tomorrow I will go visit my doctor. My BMT doctor has stopped IVIG treatments for now . It will be nice to have a break from this. It was decided that I will stay on a low dose of prednisone because it seems to give me what I need to handle food and gives me a small amount of relief from gvhd . I am starting a very slow taper of cyclosporine. This is my anti rejection medication. This is a big step! I tried to go off it before but developed gvhd in my stomach and was put back on it. So hopefully this time is a success.

In other news, I still have not booked a holiday for our family but I’m struggling to figure out where to go. I think maybe we will go away with the kids in BC somewhere and Aaron and I will go to Hawaii. Trying to get the whole family away is just not in our budget. Maybe I will take some snowboarding lessons and hit the hills with them . 😆 ( not likely)

I am loving having my puppy Molly around. She is great company for me and brings lots of fun to our home. The kids are busy with sports and school. Aaron is busy with work and being Mom and Dad most of the time. ðŸ˜Ē I had my mom and Grandma take about 15 loads of laundry to clean for me this past weekend. It was wonderful. Today Grandma made me my favourite homemade soup. Yummy!

In other news Relay for life is coming up. I’m excited to participate in it again. If you would like to join my team, I would absolutely love it. We have so much fun every year. I asked the team if we could change our name to Cancer Crushers this year. Tania’s Troopers is great but I know so many people who I have lost this past year, who are fighting still and I want us to be united in support of everyone who is or did go through cancer. Please consider joining. It is a great family event too. Credo kids I would love it if you joined us! You don’t even have to know me. I promise to welcome you with open arms. Here is the link …. you can join my team through here or if you are unable to make it , you can donate. Thanks so much.

http://convio.cancer.ca/site/TR/RelayForLife/RFL_BC_even_?px=7262996&pg=personal&fr_id=24846

Bring The Light ….

Today I find my self feeling kinda down. I know it’s lack of a restful sleep from the steroids. Steroids also can just give you a ton of adrenaline but make you feel like you want to crash at the same time. The last couple days I’ve felt a bit more tired than normal due to the IVIG I was given and maybe it was partly immunizations. I was feeling pretty happy this morning but I guess the crash just kinda snuck up on me. I am for the most part happy and content.

For the past couple weeks I have gotten a lot accomplished. It’s felt really great. I have been spending more time with friends and family and attended many events. My expectations of myself got higher and some days I was so nuts that those expectations could never be reasonable on a day to day basis. So naturally as my energy goes down, I’m harder on myself. It’s crazy how we do that. I’m being slowly weaned off the steroids now so I need to be mindful that my energy may go down and it’s okay! The race to the finish line is not about how much work we do in one day or how good we are at something but how everything we do is to His honour and glory. Am I doing it to please God or myself ? So…

Today I choose to let the light in and chase away the darkness. I refuse to let the darkness take over . I’ve worked too hard for it. God has control over my life. If my focus stays on living everyday to please Him and to humble myself before Him, I will continue to show light and be happy. Of course realistically it’s not always so easy but with prayer and reminding myself and reading my bible , it’s a lot more attainable than letting the darkness take over.

Somethings that can help ,

– read a devotional

– pray

– go for a walk

– call a friend

– listen to some inspiring music

– remind yourself to live each day with a grateful, Christ centred heart

– eat poutine ( no don’t it’s bad for you) but I totally did that today 😝

– write a blog post ( it helps me a lot )

If you still read my blog , thanks! I appreciate the support and love. I enjoy writing and it’s extremely therapeutic for me.

Good Appointment Today

I am happy to say that the GVHD is under control! My liver test came back normal . I am having problems with an infection but that’s nothing new. I have to go off antibiotics so we can confirm it which means I probably won’t be feeling fabulous but it’s a small price to pay for accuracy. I am happy with the way things are going and still take it one day at a time.

I am able to start weaning off the prednisone . It’s a very slow wean but it’s a start. The stuff makes me feel like I have adrenaline running through me non stop. I can’t wait to be done with it.

Next week I get another set of immunizations as well as IVIG and if the flu shot is available, I will be getting that as well.

In the meantime I have been enjoying watching the boys play hockey, soccer and volleyball. It’s a treat to be able to cheer them on. Molly is keeping me on my toes but I’m loving every minute of it. I am organizing while I have energy and just enjoying life where I can. Tomorrow is Mom’s 60th birthday! Happy birthday Mom! Thank you for being such a big support to me and to our family. We love you !

Enjoy your week everyone!

Survivor

Whether your fighting cancer or been through another sort of trauma I feel like we are all survivors. Some of us have something public to show for it some of us not. However I choose to celebrate being a cancer survivor because I am so grateful and feel so incredibly happy for the journey and who I have become from it. Cancer fixed me. Cancer brought me to where God wanted me to be. It taught me about love and life and value and Gods power.

We had family pictures done last week Friday and I had some fun with this sign . I’m excited to see the final outcome. The kids were amazing and cooperated too. We were a little nervous about the rain but I wanted them done no matter what . I’ve been put back on steroids and the one physical symptom of being on them is chipmunk cheeks. Remember this ….

I’m ok with the physical appearance of it because it has made me able to feel somewhat normal. All my GVHD symptoms like fatigue and nausea are gone. I’m an energizer bunny right now. It feels good to know that I’m not a lazy bum and it’s actually just due to transplant. I am soaking it in while I can. Enjoying my friends and family and church. I joined a book club . I was actually in it 6 years ago before I started working and I’m excited to go back. This has been the first glimpse of what life used to be like and I can’t take it for granted. I have been trying to organize while I have the energy. Once I’m off the steroids I could likely get many of the same symptoms back. The main reason for being on it is the GVHD in my liver. I still have GVHD in my mouth which is bothersome at times but not the end of the world. I also was diagnosed with arthritis in many of my joints. Steroids and cyclosporine have taken the inflammation away and it has been a nice break to not feel pain. Downside is I get very little sleep. Steroids will keep me up. My immunity is extremely low as well. So soon I will probably have to stay away from crowds again as flu season is beginning. I’m getting ivig every 4 weeks which helps a bit as well as immunizations. I am at risk for the measles and other stuff going around and am not able to be immunized because it’s a live vaccine and I am not allowed it for another 2 years.

I have a couple prayer requests. A few people I know are starting or continuing their fight with the beast we know as cancer. My roomie Colette has relapsed and a friend and great support Candy is about to embark in a fight with breast cancer. She previously fought Colon cancer so it’s not her first time but this time will be hard . Aaron’s cousin also is fighting breast cancer and could use prayers. A young boy Jacob is fighting the same cancer as Terry Fox and will be having amputation soon. Another friends Dad has lymphoma and is going through radiation and another’s friends Dad had a stem cell transplant recently for myeloma. Our pastors father is also fighting cancer . There are people grieving the loss of loved ones. Particularly the Santema family as they recently lost Hester. Hester fought so hard and unfortunately lost her fight . She was such an inspiration to me.

I know there are more but these people have been on my heart and I’m sorry if I have forgotten someone.

Here’s me with my Molly girl on my 1 year post transplant cancer free. I love this pup so much already. She has brought so much joy in our home and is really great to have around while everyone is out.

The Keg gave me a 1st birthday cake . It fed 14 of us . Lol

Some special peeps joined us for dinner . It was a wonderful day.

We are starting the crazy season over here with sports. All 3 boys started hockey. Dylan is playing volleyball, Gavin soccer and Madison basketball. Our schedule is rather nuts but it sure felt great to be back at the rink after not going at all last year.

Much love ,

Tania

Happy 1st Birthday To Me!

Yes you read that right! On Thursday it will be 1 year since my stem cell transplant. Another year that God saw fit to preserve my life. The road has been far from easy and still has its daily struggles, sometimes debilitating but what an absolute incredible blessing to be here today.

September 13th we will be going for a yummy Keg dinner with some friends. I asked for a unicorn and rainbow party but the Keg seemed more appropriate. ðŸĪŠ Since my appetite is much better it should be very enjoyable.

I had my 1 year follow up appt last Tuesday as well as my first of 6 ivig infusions. The infusion didn’t go fantastic as I had a reaction within minutes. Beat red face, throwing up, dizziness. It was actually really scary. So after I calmed down from that they started again at a much slower rate. Took all day but it got in me. After I had my follow up appointment. My lung function test came back great. There is GVHD in my liver, possibly joints ( I see a rheumatologist on Tuesday) , my mouth and GI track. However the prednisone is working and most of the symptoms are better.

Thursday I had my next set of immunizations. 4 of them. The same day Aaron and I celebrated 15 years of marriage. I think our marriage has stood the test of adversity and pain as well as joy and happiness and I’m thankful everyday that I can call him my husband. I’m a blessed woman. We didn’t do a whole lot. We went for some appetizers and finished at Costco. 😂

I’m still taking my days one at a time but trying to get out more before flu season and all the nasty bugs are out. Still no immunity so I have to be careful. Ivig does help a bit. I’m happy for routine with school being back in and hoping to get back into bible study with my church. School sports starts right away assuming my kids make teams and hockey starts too.

So there’s an update. I’m still loving my little Molly. She follows me around everywhere and I love it. She’s so sweet.

Immunology, GVHD

This morning I had a doctors appointment at Vgh. My doctor decided to put me back on prednisone because it’s believed I have GV HD in my liver, my mouth and throat, possibly my joints and possibly my stomach. She’s not totally convinced about the joints, so she is sending me to a rheumatologist.

In addition to the prednisone, I will be getting IV I G every four weeks for the next six months. My immunity is showing to be extremely low. I better be more careful. My bones need help too. I will be getting an infusion to help strengthen my bones.

I had a lung function test on Saturday but I forgot to ask my doc how that went.

In other news, Brandon and I celebrated our birthday last Friday. It was quiet but it was a wonderful day. I’m grateful that I am here to celebrate.

My birthday gift 😀

My Hope is in The Lord Jesus

Wow what a hot day out there today. Beautiful but my pitiful fatigued body has a hard time with it. The sunshine makes me happy but I kinda feel grumpy lately. What’s the root of these feelings? I often ask myself this and can sometimes figure it out.

Today : heat, menopause ( maybe), dehydration, spending all day with the kids but feeling like I failed as a mom because I can’t do more with them, missing my Madison who I’m sure is not missing me ( she’s at camp), feeling frustrated about the mess I live in because I am unable to steam up enough energy to work and organize. ( I think once the kids are back in school the mess will lessen).

Even through all these depressing feelings I know I am where I am supposed to be in life. I remind myself I am not a bad mom. I take my kids places where I can sit ( including cultus water slides next week) and be comfortable. I took them glamping for 2 days without Aaron, played chess a couple times ( boys just taught me). I know doing things with my kids doesn’t make me a good or bad mom but it feels that way sometimes. It makes me smile thinking about Madison and her cabin pack driving the counsellors crazy with all their giggles.

As I was saying. We all have times of ups and downs and yes being very fatigued sucks, but I sure appreciate those moments when I do get a bit of energy or have a good day physically. Today I read a passage in my bible that someone from bible study highlighted for me. I thought wow how appropriate after today’s feelings. Here it is ,

I am going to be ok. It says so right there 👆ðŸŧ. I thought of so many who are going through tough times and hope this encourages them too. I feel like this is God saying that my scars and sickness don’t define me. Good and bad He is right by my side and yours. 🌞

Next Small Setback

First off I am really excited that today I had my first set of immunizations. I had 3 needles that were full of great stuff to strengthen my immune system. I do have to go frequently. Next round is in September where I will get 4. Basically all the shots you put your kids through, I have to get. I have been extremely tired from it and have sore arms but other than that I think I’m tolerating it okay.

This past weekend Aaron was able to go up to Smithers to celebrate his aunt and uncles 60th anniversary. While he was there I went to stay with my sister in law. She injured her knee quite badly, I felt very bad for her. ( pray for her, please) I noticed throughout the weekend and even a couple days before that I wasn’t feeling very good. My appetite was minimal and fatigue picked up. I’m sure the weather didn’t help. Unfortunately my liver enzymes are quite high. They are the highest they have ever been. It scares me a bit. So my doctor called this morning and made me go back up on my cyclosporine ( immune suppressant). I think she may think I’m getting GVHD in my liver. This is very possible. I was really happy to go off of it but it is what it is.

I still feel like I’m slowly getting better and I can’t complain. It’s God’s timing not mine. Sometimes it’s hard on me because I look so normal now but I’m still dealing with a lot of little things.

I sure am loving having hair again. 😀

Look at that mop 😂ðŸĪŠ