Hockey on Wheels

Playing hockey with my family on the Morweena rink.
What an awesome Christmas!

Just a quick note that I am doing quite well. God's peace is absolutely incredible. My pain is pretty well managed but I have had a bit more pain lately. My mind is more clear than it was and I am not hallucinating anymore. I still can't walk but rather spend my hours on the couch or wheelchair.
I've had more difficulty sleeping due to some of the medication so that is something I'd appreciate prayer for.
Radiation starts on Monday but I'll have a break on the 25th & 26th. Currently we are at my parent's in Morweena enjoying some extended Christmas gatherings.
Thanks so much for the thousands of prayers. God is faithful and is completely in control. All He asks is that we praise and trust Him.
Ramona

Alright...I'm sitting on my couch watching Ramona sleep. The house is cleaned up (Ramona's mom has been with us for the last few days...which was absolutely perfect), and I'm sick of trying to find gifts on ebay. Anyway, that last post was short exactly because Ramona's meds are affecting her mind quite a bit. In fact, I had to write those last two sentences for her.
As we mentioned previously, chemo is on hold as we deal with the tumor on the right leg that isn't responding.
We had a meeting with Dr. Akra on Tuesday. He's in charge of radiation and we're really impressed with him. We feel like he's putting in an impressive effort to have Ramona's radiation pushed through quickly. It's a process that, if we don't pay attention, or if Ramona isn't prioritized will get put off until after Christmas. As it looks now, radiation should begin within the two weeks. The CT Simulation that was scheduled for next week, has been moved to tomorrow.

In dealing with the long term, a radiated tumor will grow back. This means that we need to deal with a surgery to remove that tumor.
We were also able to talk to the surgeon on Tuesday...
I'm pretty sure I used to be a nice/patient person....but when people dealing with Ramona see the glass as half empty...(and I mean very empty).......

I think I'm just going to change the topic. I can't afford to be distracted by people without hope.

I'm not gonna lie. Every part of me that is a natural human being gets pretty scared in the middle of all this stuff. It's not my idea of fun to have Ramona be so heavily medicated...
I'm incredibly thankful for the thousands of people praying for us. There are also, people fasting and praying for us. Thankyou so much.

I meant what I said with "we have no Plan B". I find it so hard to live like that. I feel like I would gladly learn to trust God with everything.......if Ramona's life wasn't on the line. I have horrible visions of everything going wrong and people trying to explain to me that God is still good...and then be back to a safe, powerless God. How disgusting wouldn't that be, for God to be safe and powerless.

The Bible teaches us to pray " Your kingdom come, your will be done on earth as it is in heaven". It's our role to pray that the kingdom come.........

I'm simply angry at how many people i see sick all around me...there is provision for healing...

In my reading, and from talking with people I notice a huge difference between people who are experiencing God...and those whose Christianity is in all practicality atheism.....
Maybe I'm more frustrated with what I see in myself. When I fear, I am agreeing with Satan. I'm agreeing that God can't fully be trusted.
I read of people who have a life that demonstates "out of intimacy with God to destroy the works of the devil"
That is awesome. I could look inside myself and analyze all this stuff, but I promise you I will never figure it out. That is one of the most destructive things in Christianity, to look inside yourself and focus on all the things you could feel guilty about, or could change, or what ever.

Heb. 12:2. "Let us fix our eyes on Jesus, the author and perfector of our faith"
...this is more than just a good idea.....
It's such a huge temptation for me to look inside myself to think of all the things that I could have done differently in the last 2.5 years, or to fear the upcoming treatment decisions......

The spirit that raised Christ from the dead is inside of us as Christians.

Thankyou for reading my smattering of thoughts. If you want get to know a powerful God who is worth trusting with your life....pay attention....this story is not done.

I was discharged from St. Boniface on Sunday and my pain is much better managed. I'm still bedridden requiring help with even simple care. My brain is not working super well but my pain meds are. Thank you so much for praying. Let's not stop believing.
-Ramona

Well... I'm pretty sure Ramona is sleeping now. The last few days have been a pretty big battle to get her pain under control. On Wednesday (anniversary) , Ramona was just starting with the methadone, and it didn't really start providing much relief until, to my suprise, she felt "good" enough to head out to a restaurant for supper. I guess she was getting used to the new medication and so she fell asleep a few times at the restaurant, but it was incredibly special that it worked anyway. The leg tumor continues to affect the nerves in her leg, she just realized tonight that she can't really move her right foot much any more.
Yesterday, and parts of today had a lot of pain as they continued to adjust the pain medication. It seems to be fairly effective now...although Ramona is hallucinating sometimes.
Ramona is only taking one of the two scheduled chemo drugs. This is because we are hoping to have some radiation on that right leg (consultation appointment Dec. 9) ASAP. Adriamycin and chemo do not work together.
I can't do justice to any spiritual topic with the time left on this kiosk.............we know Jesus heals....The Bible has to be speaking the truth about the power of God...we have no Plan B...
- Earl

Thankyou to everyone who is texting and wishing us a Happy Anniversay today. We're celebrating quite a bit different than planned. We have the results from the CT scan. The tumors that we previously knew about shrank, but this previously mentioned leg pain is caused by a tumor in her lower leg. It is a 14 x 4 cm tumor that must not be responding to chemo, or else it would be shrinking now too. Today will continue to be filled with meetings with medical staff. Ramona's leg pain has quickly come to the point where her morphine dosages weren't cutting the pain. We're now in the process of trying new meds......now to my point. Keep praying. We've made it this far due to prayer. Thank you all so much.
-Earl

So...it's looks like we haven't written for some time. I think Ramona tried the other day...but I guess it must have disappeared.
Anyway, I guess we need to sum up the last two weeks. Ramona is heading into the hospital within a few hours to begin chemo round number 16. It's absolutely ridiculous. That's 885 hours that chemo has been pouring into her, never mind the hundreds of litres of other stuff. etc...etc..etc.

For some reason Ramona's leg continues to be a frustration. We're not sure why all the discomfort and pain is there. A bone scan for her leg is scheduled for a week from now.

This week is also the week the CT Scan is going to be done. Keep believing. It's often pretty easy for us to get discouraged with everything. It seems God has done everything except take the cancer away. It's really easy to forget all the little miracles that have happened along the way. Thank you so much to everyone who continually reminds us that you're praying.
I can smell supper,
Earl

Home Again

My hemoglobin Saturday morning was 118. That's got to be a record high for me! (Okay so I did have 3 units of blood this week, which might attribute to the high number) Whatever the case, I was excited knowing I wouldn't be delayed by a blood transfusion Sunday morning. So yes, we are home again.
This week was...I don't know...decent, okay, average, pretty good...it's still chemo...but honestly pretty good. No crazy anxiety attacks which was awesome. I cut out some anti nausea meds which I really think helped. Thanks to all the prayers in that regard. Whenever I enter the hospital and get connected to my pole, I instantly have this background anxiety. It stays with me until I am disconnected and discharged. It's a constant battle to fight the feelings of anxiety. However, these feelings were just background this round and for that I'm SUPER grateful.
Here's the God story of the week:
Monday night when I was admitted I was told that I was in Room 34. For those of you who don't know, that's the absolute best room on 5B-it's the luxury suite. It's designed for palliative patients, but when it's not in use for that, the nurses are so amazing that they allow chemo patients to be in that room. I was excited but at the same time I didn't know if I could handle being in that room. That had been Andi's room for the last month and that's where I saw her for the last time.
After a mental battle I decided that the advantages of being in a private room were so great, that I would put forth a real effort. I entered the room and forced myself to sit on the bed and almost immediately, it became my old room. Before Andi was so sick, I had been in that room numerous times and all those memories came back. Even though some of Andi's Halloween decorations were still dangling from the ceiling, I was okay with it.


Tuesday afternoon one of the charge nurses comes into my room, has a seat and asks if it would be okay if they would move me. What can I say? Of course I don't want to move, but they already know that and they wouldn't move me if they didn't have to. So I agree to it. Apparently I'm going to move to a nonprivate room and it's going to happen around supper.
This was super hard for me. I had just finished telling Earl how amazing it was to be in a private room and now I had to move. I just felt myself getting really discouraged and down and so I suggested that we pray. We prayed that some crazy miracle would occur and that somehow I wouldn't have to move out of my room.
The evening nurses come on and I ask the charge when I'm going to be moving. She doesn't know what I'm talking about. I tell her that the other nurse had told me that I'd have to move because they had to accept a patient from emergency. Apparently they were not accepting this patient anymore and I didn't have to move. Wow-I prayed and God directly answered my prayer; how awesome and exciting!

For those who are asking how I'm doing. Relatively well. I've been having some ankle/leg pain that has Dr. Wong clueless. I've had it for about 2 1/2 weeks and at times I think it's getting better and then it comes back. Today has been pretty good and I'm once again encouraged that it's getting better. I don't believe it's anything serious. I had an X-ray to rule out tumors and an ultrasound to rule out blood clots. Now we just wait for it to completely disappear.
Thanks for your prayers and support
Ramona

Andi

Today I went to my friend Andi's funeral.

Andi was an incredible fighter. The bravery that she fought this horrible disease with was amazing.
Andi was also hilarious-she had a great sense of humor and was cracking jokes even while she was in horrible pain.
Andi, you were such a welcoming person. There was never a time that you felt too miserable to visit with Earl & I. Even in your final days, you smiled when we visited and I knew you were glad that we were there.
Andi, you were so brave. When Dr. Wong told you that you were going to be transferred to palliative care, you still were able to put on a smile and come tell me about it.
Andi, I'll miss you.
Tonight when I go in for another round of chemo, I'll be looking at your room and be hit with the fact that you're not there. I'll miss not being able to come visit you whenever I'm lonely or bored.
I'm so glad Andi that you're not suffering anymore. Most people will never even come close to experiencing the kind of pain that you went through. You fought hard and I'm so proud!
Earl & I chatted with Bobby for a long time today, Andi. He was sitting with us during the meal. He's a great man and he loved you so incredibly much.
And so Andi, I now say good-bye.
I'm so glad we were able to meet and become friends. I can't wait to see you in heaven.
I love you
Ramona

Earl Cooke, myself and Andi Jan. /08
All diagnosed with sarcoma and all having chemo at the same time

This is kind of fun, getting people to guess what kind of food I chose for my birthday!
None of you got it bang on, but the Mennonites were the closest! I had a pretty big list of things that I was debating about. Good old homemade cottage cheese perogies covered in white onion gravy was high on the list. This wouldn't have been complete without farmer sausage slathered in ketchup on the side. So good...maybe next year. :)
So the menu was as follows:
Lunch: Chili & Greasy White bread garlic toast
Dessert at Dairy Queen -Reese Twister (Only was able to finish a third of it)
Supper: (Don't laugh too hard-I know it sounds childish, but what can I say... way too normal)
Taco Salad with that amazing white sauce and New Bothwell cheese, Juicy sausage burgers with all the works including processed cheese, and Spinach salad with bacon
Dessert was this amazing Pistachio Poppyseed Dessert.
Thanks to both Moms who made such a delicious supper!

25 Years

First of all, thank you to all of you who wished me a happy birthday. I truly can say that in spite of everything, I had a good day.
Yes, I got out of the hospital early Sunday morning. I've felt pretty good all week. Of course I'm super tired and weak, but I think I'm doing a lot better than last round.
All week I was hoping and praying and wishing that I would feel good this weekend. I really wanted to have a special birthday but I knew that Friday would be the beginning of my 'bad weekend'. (About a week after I come home, my white blood count always drops and I usually develop a fever. This has often resulted in me spending some quality time in emergency.)
I know there were a ton of people praying that this weekend would be different. I'm so excited because I am not writing this blog from the hospital but rather from at home! Yesterday I felt super weak and tired all day. I could tell my body was really fighting. I tried to rest a lot and drink lots of water. Usually the fever spikes in the evening. I decided that I was not going to check my temperature unless I felt really bad. As the evening progressed, I knew I had a fever but I felt okay so I just kept enjoying the evening with my family and Earl's family. Once everyone was going home, I checked my temp. It read 38.3. Not a good sign but I decided to wait it out to see if it would go down, or if I'd start to feel bad. (I'm kind of used to these things, so I know how to read my body) Just before my brother left, he prayed for me and a few minutes later I felt my body cool down. I really believe that the accumulation of many of you praying kept me from entering the hospital. I haven't checked my temp since last night-I can tell I don't have a fever. I've been exhausted today as my body is still fighting but I am so super grateful that I am doing as well as I am. Thank you everyone of you who prayed that I would have a special birthday.

Ramona

....so I get the task of proofreading this and I find nothing here about Ramona's food choice for her birthday...I'm curious if any of you guys could guess what kind of 'normal' food she would choose after having gone almost a year with extremely limited amounts of red meat, dairy, white flour and white sugar....

Earl

Well...here goes. From my perspective Ramona was having a pretty decent day. Last night was filled with aches and pains, and she actually never feels perfect during the day either, but this evening we realized that Ramona has gone three days without morphine. That's pretty impressive. The withdrawal effects from morphine are similar enough to what chemo feels like, I guess.

A combination of prayer, good people dropping by, and an adjustment to the nausea medication have improved the struggle with anxiety in the last two days.

When I came back to hospital tonight around 8:30. I went to the lounge to find a big group of people hanging out and having fun in there. Apparently, I had hair on my head.....so I didn't fit in. We have a neat group of people on 5B right now, all dealing with similar diagnosis es and chemos.

-Earl

Ramona is back in the hospital. On monday the port was put in with no complications. The whole process of this twenty minute surgery took 3.5 hours. Ramona also received two more units of blood on Monday. With all this happening chemo only started yesterday.
Prayer:
- Anxiety is a huge battle in the hospital
- Chemo would continue to be incredibly effective
- Our friend Andrianna is receiving horrible news from the doctors. They are talking about palliative care.

For now,
Earl

Monday night I went into the hospital dreading like crazy my 2nd round of chemo. I stayed the night and the plan was to put a port in Tuesday morning. (A port is a device that is surgically inserted just underneath the skin. It is placed near the heart. It serves the same purpose as a PICC.) Well, plans changed all day. Winnipeg doesn't have the kind of port I need-it needs to be shipped from Toronto. For awhile we thought we'd just put in a temporary PICC, but that didn't work because my veins are too "traumatized" from the the previous PICCs. So I was sent home Tuesday afternoon. The last I heard is that the port takes two days to get here from Toronto and so I'm expecting to go back in on Friday. I'll have my little surgery and then chemo will start immediately after.
Of course it's frustrating when things don't quite work out, but truthfully, every single day that I don't have to have chemo, is another day that God can miraculously heal me. I believe that God can and has been using the chemo to heal, but I absolutely hate going through it. As I told Earl, I'm sick and tired of being sick and tired. Ever since my first round of chemo, I have not had one day that I have felt good all day. I still am weak, I still feel sick a lot of the time. I have to admit that I'm fighting discouragement, I'm fighting anxiety. The battle is so intense. It's hard to stay positive when circumstances aren't positive. I feel like I'm battling this cloud of anxiety that says that I can't escape feeling sick. Yes, I know God is still the same God-I know He hasn't changed. I know He is protecting me and 'covering me with His feathers' (Psalm 91) No matter what you know, Satan is still trying to discourage. And so I ask for an extra dose of prayer in the spiritual battle realm. May Satan and his discouraging thoughts flee and may I continue to trust Jesus. May I rest knowing that He only wants what is best for me and He's got me completely taken care of.
-Ramona

Goodbye PICC

Today my PICC left me!! After weeks of arguing back and forth on whether it was infected or not, today we finally got some clarity. The blood test I had yesterday helped figure things out. So, I am super excited about showering, finally a shower where I don't have to worry about getting my PICC wet! I'll probably have a new one put in on Tuesday, but that doesn't make sense to me cause I'll need it Monday night, so I don't know......
And that's the deal. I'm still fighting some kind of stomach discomfort and still tired and weak. I'm hoping that now that the PICC is gone, I'll start feeling better.
Ramona

Home

Yesterday the doctors all finally agreed that I could come home. So around 3:30 Earl & I came home and crashed and slept for a few hours!! I had felt so good in the hospital and was so thrilled to be home, but last night I again developed a fever. It wasn't really high but enough to realize that something was going on. We went to bed-the night was filled with shivering and sweating but not too bad. I felt a bit better today and have not checked my temperature in hours. If the fever continues-I have to go back to the hospital. I'm really hoping and praying that doesn't happen.
Tonight Earl & I went to a fundraiser for a friend who is also fighting cancer. My heart is heavy tonight as I was faced with the realities of her situation. It is only more of an incentive to keep praying, praying, praying. It was also a lot of fun hanging out with our friend, Earl who was also at the same event. Another highlight was hanging out with my chemo nurse and meeting her family.
So tonight I go to bed, praying that I can enjoy this weekend and not land up in the hospital and praying for a miracle for my dear friend.
Ramona

Purple Hair

Those of you who know me, know that I would never, ever dye my hair purple-it's just not me. Well sometimes you do things you'd never do if you weren't in the situation you're in! Sunday morning as I was fighting fevers in the hospital, I noticed a few hair on my pillow and immediately my hand went to my head and gently pulled and sure enough, my hair was starting to come out. Instantly I decided to shave it and made arrangements to have a clipper brought in the hospital. However, Earl's sister and Earl thought it would be good to have some fun before I went bald and so this was my look for a few hours!
Right now, I am sitting at home and blogging. Again I'm not technically out of the hosptial, but thanks to an amazing husband who fights for me and an awesome group of doctors, I was allowed to come home for the night. I need to be back by 8 in the morning. Today I am feeling superb. I feel better than I have since before chemo. This morning something was simply just different. My white blood count is coming up and I believe that's a huge reason. My platelets are still super low, even after a platelet transfusion. It's not too worrisome at this point, but I have to be careful. I don't have a clue when I can come home for 'good'. I have not had a fever at all today, so that is a first since Friday night. As much as things are going in the right direction, the right doctors have to all agree that is is safe for me to be home. Fevers and possible infections for someone in my situation, are a big deal to doctors.
Now for the really encouraging part of my day. A year ago when I was in the hospital, there was another girl going through chemo as well. We were often in the hospital at the same time and sometimes hung out together. However, I had not seen her since then and have only sort of kept in touch. Today her mom came to visit. It was such a wonderful surprise and so good to chat, connect and relate. What was so encouraging to me, was how this woman has changed completely. Previously, she was stressed and worried(no one can blame her)but today she was fighting for her daughter, praying and believing that her daughter would live. The spiritual change was so amazing and so touching to hear that her and her daughter pray for me all the time. Medically, her situation is similar to mine. We both need miracles. If you think of her, please pray for her.
I feel like there is a spiritual battle raging. Ever since I openly stated that I believed God would heal me, a doctor has treated me much more rudely. Pray that the Holy Spirit does what He does best.
And so, that's my update.
A special thanks to Melissa who sits with me while Earl's in class and studying, to all those who've filled our freezer with food and for every single prayer.
I can't wait to get into my own bed
Good night

Ramona is still in the hospital right now. She hasn't felt super good the whole time in the hospital, but considering her Neutrophils were zero for a while and the rest of the numbers were really low, I'm thankful for how good she felt. She continues to get fevers. The doctors don't know the source of the fevers.
....I guess I'll just leave you with small bits of vague info for now....I'm heading back to the hospital right away....
-Earl

So, Ramona and I went out for ice cream last night. Unfortunately......it was our stuff left over in the freezer at St. B. Ramona is in emergency now. We went in last night around eleven p.m. Her white blood count is 0.1 and her platelets are 11. She is fighting with a fever too. Considering all the previously mentioned things she feels pretty good right now............as I'm writing this, I just got a call that Ramona is being brought up to the 5th floor.
Thanks so much for praying you guys
-Earl

So, how to sum up the last week?? I sit here not having a clue what to write, so much has happened, so much intensity...
The last everyone heard medically was that Dr. Wong came into my room trying to tell me the seriousness of a possible infection. Due to this potential infection, I have been on superbug antibiotics. These antibiotics can not be taken in pill form. Therefore, they did not let me out of the hospital on Monday, neither did they let me get out on Tuesday. Now Home Care is set up and a nurse comes to our house twice a day to administer my antibiotics. I was able to go home for a few passes on Monday and Tuesday and both nights were spent at home, that was awesome, even if we had to be back at the hospital early morning.
I'm sure a bunch of you are confused about this infection, so am I. Earlier in the week I had a fever which resulted in the blood cultures showing an infection. However, the 2nd cultures taken a few days later have not shown any infection. Apparently it can take a long time for these cultures to grow, so we wait and take precautions.
I feel like I'm super slowly starting to recuperate. The couch and I are great friends. :) My pain is for the most part under control.
Thank you so much for your prayers, comments and emails. We have been surrounded by support and I thank you. It blows my mind how many people around the world are praying-thank you. And as I genuinely thank you for you prayers, I long for more as I know that it's only through Jesus that I am healed. This weekend has potential for my white blood count to drop resulting in a hospital stay. Pray that the fever stays away.
Ramona