6 Months Ago…

6 months ago I was being transferred from Surrey Memorial Hospital to Vancouver General. It was confirmed at VGH that I had a blood cancer.
As I think back to the weeks, days leading up to this, it really makes me sad. How life can change so suddenly. One day you are a functioning Mom, friend, wife, Auntie, teacher and the next it's gone.

I sometimes wish I could go back and change certain things. If I would eaten better, used different moisturizers, stayed outa the sun, got more exercise, would things be different? Who knows, right. I can't dwell on the what ifs. I wish I would have never had to tell my kids that I had cancer. I can still hear the cries of my youngest as I told him. It's amazing how many people my being sick has affected. I feel loved and supported but somehow still can feel so alone. No one really understands unless they have been through it. I'm not asking for sympathy either, just sharing my thoughts on my journey so far. I try to lean on God and pray during this time but it still lingers , even 6 months later. My appearance has changed. When I look in the mirror I don't see me. I see someone older. I guess I have matured through all this but I'm looking at my hair and my weight and strength ( or lack of). I'm weak but getting stronger everyday. Here's some stats for you,

I have received:
4- bone marrow biopsies
15+- blood and platelet transfusions
4- rounds of chemo (24 doses)
3- Hickman lines
1- trifusion line
1-blood infection
1- surgery
1- blood clot
100+- shots in my belly
Plus more.

What's to come will top all that. I guess I will save those stats for my 1 year mark. It is my prayer that God grants me many more years but the fear is there.

In the last 6 months I have tried my best to be there for my kids and Aaron. I have managed to make sporting events, school plays , grade 7 grad, celebrated birthdays, gone to a concert, gone on a weekend get away with the family, gone out for dinner and spent time with friends, none of it taken for granted. Always thankful for each moment .

I am thankful for the continued care from our church and extended church community in forms of cards, gifts, house cleaning, meals, visits, encouragement. I am thankful for everyone who has stood by us. For the countless hours driving me to and from the hospital, surprises on my door step, hugs when I needed them. Being so dependent on so many people is the hardest thing ever. At times I feel like a burden, often actually. I know it's all in my head and that people want to help but I think naturally it's hard.

Going forward I'm excited, scared, happy to get past this. I'm ready to fight, ready to do what I have to do to be healthy and happy again.

Bad News Twice Yesterday

I sure live in a roller coaster world right now. Thankfully I am starting to become desensitized to all these trials. 

Yesterday I found out my 10/10 match fell through. There is a 9/10 they are working on and hopefully all will go on as normal. There is a higher risk of complications from this match but they will add more anti rejection drugs. With all the antigens they match the one I have mismatched with is the best one to be mismatched with. I don’t know the reason for it falling through, they don’t give out that info. I’m thankful I still have a donor. I’m a bit more nervous but will leave it with the Lord as I know this is in His hands. 

After this phone call I got another call that a medication I need to lower my antibodies will not be covered. It’s extremely expensive. I think the doctor is fighting it and trying to get the insurance company to change their mind. Otherwise they will try to find another way. 

So yesterday kinda sucked but without knowing anything was going on a dear friend had left a card and flowers at my door step, another friend took me out for some shopping and and a snack, a sister in law treated me and someone from church dropped off treats for the kids. Wow! Right? I’m surrounded by a lot of amazing people. Even Aaron was treated to dinner out with my Dad. 

I am titanium, that’s what my doc says 😝

Step 1: Stem Cell Collection ✔️

You would think after 4 rounds of chemo it would get easier. That was not the case with me this time around. I am still recovering. Despite low hgb we went forward with the new central line and stem cell collection. The new line is not a Hickman, it's called a trifusion line and is actually a bit smaller . That was done on Tuesday. It's pretty sore still. 

On Saturday I started the stem cell collection process. This is exactly what my donor will be doing for me. It's 5 days of GCSF injections to stimulate the bone marrow to produce lots of stem cells. I was able to be taught how to do the injections but gave Brenda the privilege of poking me. It was pretty entertaining. 

Unfortunately I had bad side effects to the medication. This apparently is due to my low hgb levels. I was in bed for 4 days barely getting up. I also had my bone marrow producing cells like crazy. Most people have 2 days of collection, sometimes 3 and I collected enough yesterday and don't have to go back. Yesterday we arrived at the apheresis clinic and they hooked me up to the machine. The machine took my blood out one lumen and took the stem cells out and put my blood back in another lumen. I sat there for 6 hours. I felt pretty weak after. Ghostly in fact. My blood pressure was low and I did not feel well. Thankfully they gave me a blood transfusion and I seem to have a bit more energy today. 

Those are stem cells ⬆️

So step one is done. We meet with my doc on Monday to learn all about the transplant and find out about the rest of the process this summer. I do know I have a busy August, which I was expecting, it's all part of the fight . Lots of  transplant testing. I have 5 sessions of plasmapheresis at the end of August. This take 3 hours each time. As for the rest , we should know shortly. 

In other news, Aaron has a birthday on Sunday. I want to share with everyone how amazing he has been. This has been such a difficult time for him having to look after pretty well everything and everyone and working . He is up for work early and doesn't go to bed until everything is done. He has acted as my hands and feet and my shoulder to cry on. He has led our family to rely on God in this difficult time and never gives up. I hope on Sunday he will be able to put his feet up and enjoy being celebrated. I love you Aaron. Thank you for everything. ❤️

Sick 😷 …

I’m pretty well at the tale end of this round. Saturday my counts were border line transfusion. That means I didn’t need any. I have zero neutrophils though. I asked the nurse about visiting my family at Mission Raceway, my brother was racing. She thought it was a little too far from the hospital and to stay away from crowds and wear a mask even though it’s outside. So I went, I enjoyed, I didn’t wear a mask 😳 and I came home and got a fever. Oops. I guess I should have stayed home. It was great to see my family and hang out with my friend Denise and watch my brother kick butt in his car. I couldn’t walk around so Dad arranged for me to go on a golf cart if I needed to go anywhere. Anyways I’m still sick. My temp is hovering at very low fever, my stomach is nauseous, my head feels yuck, my legs are weak and it’s boring being like this. So it’s no wonder I had the itch to go out. Here’s a couple pics…,

Sunday morning with an ice pack on and my eyes closed in bed I turned the sermon on from our church. You would think I would fall asleep but I was so engaged in the message at the end I almost stood up to clap. The sermon was on psalm 145 .

Verse 7: They celebrate your abundant goodness and joyfully sing of your righteousness . 

I don’t play instruments but music has always been very important to me, especially when I became a Christian. It was a good reminder when I’m feeling down that the bible is filled with beautiful songs. When I’m driving to Vancouver alone , I often crank up my playlist and sing. Sometimes I cry but it’s never a sad cry. It’s with thankfulness. Music has that effect on people, on me. It is wonderful how God is working through  these artists on the radio ( praise 106.5 ) . It has helped put my head focused on God and not my fears. 

Anyways, back to my update. I go tomorrow to get my blood checked and see if my counts have recovered. Wednesday I see the surgeon that took my gallbladder out. Just a post op appointment. Saturday I start my GCF injections. So 2 more needles everyday for 5 days. I met with the hematologist at the aphresis clinic to go over the procedure of both giving my stem cells and the plasmapheresis I will be getting at the end of August. It was a lot to take in. Sounds like minimum side effects other than feeling the bone marrow working overtime. Back pain. This is from the gcf which helps increase the amount of stem cells. On July 11 I will be back in the hospital getting a new Hickman line put in. Yes, you heard me right, my 4th one .Since my veins have all collapsed they have to do the donation through a port and apparently mine isn’t strong enough to handle it. Normally they would put a temporary line in your neck but because I will be doing plasmapheresis at the end of August, I have to get a new line. I’m not looking forward to that. July 12 and 13 I will be giving my stem cells . It will take about 6-8 hours each day. 

On July 17 two of the kiddos go to camp and one starts swimming lessons, it’s also the day we will be going over everything about the transplant. The good, the bad and the ugly. 

My schedule for the summer is very busy with appointments but I’m happy to still be home with my kids. We bought them a pool, since we aren’t going away this summer. We thought it would keep them busy. I’m looking forward to floating in it too. Enjoy the week, it’s going to be cooking out.