The Cancer Card

Mark doesn't want me to post about this topic, he claims it will blow his cover. I feel that people can probably see through his devious plan regardless, plus I think it is pretty funny so I will blog away! Since the diagnosis, if Mark wants a certain tasty treat, doesn't want to put his socks in the hamper, or take his dishes to the sink, he pleasantly reminds me that he has cancer. This method is affectionately known as the cancer card. The cancer card is also played when I am tired and ready to go to bed, but he needs a back or foot massage. It was once used when he took out the garbage and only made it to the deck, the trash can was just too far for those cancer ridden legs. He knows I am a big softy, and I figure there should be some benefit to having cancer so I usually oblige. There are times when it is totally abused, but whatever he has cancer, what can I say?

I never thought I would see the day when I would abuse the cancer card. Those who know me can attest to the fact that I am too nice to say no. Whenever the Navy recruiter needed to make his phone call quota, he knew he could dial my house. I can't tell you how many times I gave the armed forces a soft answer that almost sounded like a yes. It is pretty scary to think I could be on some aircraft carrier right now because I didn't have the guts to say I wasn't that interested. It wasn't until I told the guy I was deathly afraid of the ocean, was 5'1'', and about 98 lbs that he figured I wouldn't be an asset. Many a time, Mark has had to bail us out of an agreement that I have made on the phone to be a lifetime Disney gold member, or the Deseret Book family video club, or some other nonsense that I couldn't say no to because I didn't want to hurt their feelings. I am getting better; I told the smelly, scary Hoover guy that wanted to clean my carpets last Saturday that I loved my carpets smelly and dirty and he wasn't getting in my house. (I have my pal Mandi to thank for this strong, powerful woman I have become.)

 While I am improving, you can't expect to run the marathon your first time out. The other night, Mark had played his card well and I went to the grocery store to satisfy his latest craving. A man was outside with signs about the Census. I thought he was wanting people to take the Census, and being the responsible, almost military personnel, American girl that I am, I stepped up to the plate. Little did I know he was looking for people to work as a Census taker. Not a good idea for me, I lasted a full 6 hours as a telemarketer back in the day. I tried to back pedal, but the nice old man wouldn't take no for an answer! I told him I had a job, I was super busy, and I was not qualified. He kept throwing out ideas about doing it after work, fitting it in at anytime, and that everyone was qualified. In absolute panic, I screamed, "My husband has cancer and my life is an absolute nightmare right now and the last thing I want to think about is the Census!" I did it. I shamefully played the cancer card. It worked like magic and it was his turn to back pedal. As I left the store a while later with my groceries, he once again apologized and wished us blessings and luck. Honestly, I felt slightly awful, but secretly relieved that I wouldn't have to go door to door.

Today was a chemo day. It went a hundred times better than the last time. Now that Mark is a few treatments in, they can push the drugs a little faster since his body is adjusting to them. His back poke was also a success. To help him relax, the doctor ordered some Ativan and Mark felt very happy afterwards. Not happy enough to agree to a puppy, but happy enough to not mind the procedure. The official procedure rating ended up at a 7/10, which is up from the 4. There is still room for improvement, Mark has a very tight back which makes for a spinal adventure. However, the larger needle didn't need to be enlisted and overall it went well. No headache! This is a special picture of "Happy Mark":

 

Awesome isn't it? With that cute shiney head, lovable smile, and positive attitude, how can you not cave into the cancer card? Please don't discount it if we use it in the future. Mark actually does need it at times and it really is one of our few perks of the whole ordeal!

Fasting Thoughts

I know most, if not all of you read this blog to see how Mark is doing. He is doing well, and there is no big changes so I thought I would post tonight about some things that have been on my mind lately. Mark and I sometimes sit back and try to make sense of things, myself probably more than Mark. He has more faith and trust than I do. This week my thoughts have centered around life's journey and lessons. It really doesn't make much sense at times. During Fast and Testimony meeting, I was struck with the realization that so much can happen in a month. Last month, we wanted to hold a special fast for our adoption, this month, our mind was in a completely different place. This is not exclusive to Mark and I. In seconds, we have seen countries recently rocked by quakes and thousands of lives changed.

When I consider all the events that seemed to fall in place beautifully for an adoption, it blows my mind that our road has changed so much. Why "waste" all that time and energy on that route only to see it abruptly hit a wall? I had a friend jokingly tease Mark about where his righteous living has gotten him. I sometimes, in anger, smirk at that irony myself. Why do we try so hard to figure things out and work so hard to do the right thing when so often, it seems in vain. At the end of the day, I feel like I have lacked understanding, been totally off base, and I am completely confused, especially when I really thought I was doing the right thing.  As I have mentioned before, the young women in our ward are reading the Book of Mormon to earn a trip to the General Young Women's meeting later this month. Many of them are reading and not understanding. I am sure they get frustrated with the challenge. I feel like the leaders have tried to teach them the importance of reading just to read, to get it done. I hope when they finish, they realize that at 12 years old, it isn't crucially important that they understood each word, that they grasped 2nd Nephi, but that they did it. They were obedient and they read it cover to cover. After preaching that to them throughout the process, it hit me this Fast Sunday that I needed to take my own advice.

It doesn't matter if I understand the whys or the whats that Mark and I will specifically learn from this experience. We (meaning mostly Mark) are confident that things will all be well in time, and sometimes I get hung up on what that actually means. I have no idea whether my idea of "all things well' is the same as the master plan, but maybe that isn't the important thing. I just need to be doing the right things whether I understand or not where they will take me. Perhaps this "righteous living" hasn't completely gotten us where we think we want yet, but where will it get us? I am beginning to understand more fully that this Gospel has never been and never will be about instant gratification. I loved Elder Bednar's October 2009 Conference talk on consistency. He talked about having family home evening and scripture study in their home and how there was not one defining spiritual moment, it was about the journey: "The consistency of our intent and work was perhaps the greatest lesson—a lesson we did not fully appreciate at the time." Through this ordeal, I am struggling with that particular lesson. I have to remind myself to take things one step at a time, be a little more obedient, and have a little more faith, even if I don't necessarily like the way it is being taught. I am not always thrilled about how things are going, but I am recommiting myself to being consistent and not worrying about the whys or the details.

Rarely, if ever, do we comprehend all the answers. There are some Gospel principles I grasp, but many more I do just because I am told to and I figure there must be some merit in just being obedient. I believe I know that in the end, it really will all be well. There are days and times when the Spirit witnesses that I am on the right path, and there are glimpses of the happiness in store. I doubt I know the extent of that happiness and how well all will be. If I did, this wouldn't be much of a struggle or a learning process.

Ok, off the soap box and back to life updates. Mark and I were able to make it to the cabin this weekend and we had an amazing time! It was fun to kick back and relax somewhere besides our house. Mark claims to get sick of our "bat cave" once in awhile. It is hard for me to imagine that (ahem), but since he is the cancer patient, what he says goes:) We had great food, good games, and the greatest company. I learned not to discount the first graders, one was directly responsible for our team putting down 2 out of 3 games of Sequence. I have never won Sequence at my parent's house; I think it is because I am usually paired with Mark and he never wins anything. Here is picture proof of my point. Mark is getting the Mario Kart beatdown!

Even the little one seems to be concerned that Mark can't place better than fourth. Mark, as long as you win the important battles, I will be satisfied.

Apparently, I have been quite enthralled with this post. Mark thought he heard a car door slam and went to check it out. As he walked through the kitchen he noticed some cookies on the kitchen table. Our trusty "guard dog" didn't even alert us to the fact that some eight year old neighbor girl knocked three times and busted into our kitchen. Slightly alarming, but quite funny. She left Mark a wonderful note of encouragement. We love our ward family! Even our primary kids are amazing. Shortly after the cookie bandit struck, we received this picture of two young men showing a different kind of support...

How cute are they!?! I noticed at church today a few other of the primary boys were sporting similar styles. We love you guys!

No news, good news

The last few days have been pretty normal. What we learned last appointment, however, was that now is the time to be more careful about infection. We pretty much had it backwards the first go around. The chemo meds affect his blood counts starting day 7. Mark has to take his temperature three times a day to make sure he doesn't have a fever. As soon as he feels the best is when we have to be the most aware. It is so bizarre. Mark had his blood work done today and his white blood cells were low. It is crazy! Last week they were 17.7, this week .7 Things change so fast. I was hoping he would be able to come to my soccer game tonight so that my team would believe that I was in fact married. I always talk about this mysterious Mark person, but since he never shows his face I bet they think I am making the whole thing up:) Since the indoor arena is quite possibly the dirtiest place ever, no amount of sanitizer and protection could have saved Mark's immune system. Maybe next time. For now I am the oldest person on the team who claimes to not be a loner.

Mark just got done telling me that the nurses at the office are downright pros. He has quite the collection of bruises and sore spots from his Monday beatdown. Today's blood draw was smooth as silk. He was so grateful for some gentleness.

In other news, we are hoping to go with some friends to a cabin this weekend. Mark and I will pretend we are going on a stellar vacation. We are quite excited and I hope he feels good enough to go. So far so good.

Two Hard Days

I knew it was coming, the time where things weren't quite so wonderful, and my attitude wasn't quite so optimistic. This weekend was long and tough. Mark's headache got worse with each passing hour, and since it was the weekend, there was not much we could do. He tried to go to church, but only lasted long enough to take the sacrament. He spent basically two whole days flat on his back. We tried taking pills, drinking caffiene, but nothing helped. Just laying flat and that was even fading. Even to get up to go the bathroom became a challenge. The pain got so intenese, he started to throw up. It was hard to see him so miserable. My dad came over and gave Mark a blessing last night and he was able to get a good sleep. This morning, he had an epidrual blood patch done and it immediately helped his symptoms subside. This time, the back poke didn't seem to bug him that much. The 20ccs of blood they pulled was the tough part. That is a lot of blood. They had to pull from both arms to get enough. He was pretty sore all day and slept the rest of the afternoon. Mark wants to be a pin cushion for Halloween, he has been practicing well. He is grateful to be sitting up tonight, so the few holes were totally worth it.

This weekend was emotional for me. Despite the front I put on, especially on this blog, it isn't always easy. Sometimes things get to me and I have to take a moment or two to cry and vent. These past few weeks have gone by so fast, but they also seemed so long. It has consumed our lives. I hate looking back to when this wasn't the norm and thinking of all the things we were getting excited about. It is hard to put those things on the back burner. I know I need to remain positive and hope those things will happen one day. I felt I was impatient before, and now I am being forced to be even more patient. This weekend I even had some fears that I hate acknowledging, so I won't. I know this week will be better. I know tomorrow will be better. I hate to wish time away because it goes so fast, but I am truly grateful that it is passing. This week will be my "What about Bob" week. Baby steps to 4 o'clock, baby steps to bedtime, baby steps to Tuesday, baby steps to Friday, baby steps to spring, and baby steps to the summer of remission.

Saying Goodbye to Insecurities

We all have our insecurities, and if someone ever points them out to us, it sticks with us for a long time. One day during high school seminary, a girl (not me) told Mark his head looked like an odd shaped grape. I am sure that she didn't think twice about it, and we all say things like that. Little did she know that that comment would stick with Mark forever. I have had to live married life constantly consoling Mark that his head wasn't deformed and that I didn't think it resembled fruit. He was so worried that one day, when he was a little older than 27, he would go bald and the world would see how ugly his head was. I know when he learned he was going to lose his hair, he was scared and self-conscious.

I dreaded the day his hair would start to fall out. It was easy to ignore the cancer when Mark looked the same and felt good. The idea of him being bald meant that everytime I looked at him, I would know he was sick. I couldn't pretend anymore that things were just fine. I am not going to lie, after hearing about his head for a few years, he got me a little nervous about that too. Starting Thursday night, every time Mark scratched his head, a few hairs would come out. It started rubbing off on everything, and while he still had most of it, it was depressing and uncomfortable. Today, we decided to just get rid of it. His spinal headache came back, and our wonderful friend down the road offered to not only shave his head, but give it a massage to try to help the headache. Mark said it felt wonderful! We waited with baited breath, wondering what we would find when all the hair was gone....lumps, moles, divets, seeds, grapes, small children? Here is the before picture, notice his cheeks are starting to get a little bit round from the steroids.

Uncovering the monster....

And the moment we have all been waiting for.....the big reveal!

I think we were all pleasantly surprised, he doesn't look like a grape at all! I think he has a cute head. We kind of want to hunt down that girl and show her she didn't know what she was talking about. He doesn't even have a weird mole. There is a huge red spot where a lymphoma used to be; that's a little interesting but overall Mark is loving it. He is much more comfortable. He did say it was a little colder outside than it used to be. He is beginning to agree with those that have told him hair is overrated! Mark is hoping that his buds shave their heads in support. (i.e Weston, Braxton, Coy).

"We are grateful that today is over"

That is a short segment from Mark's prayer tonight. It pretty much sums up what today was like. Today was one of those reality days, when you realize that he really is sick, and this really isn't a walk in the park. It was rough. We spent the entire day getting chemo. 9:30-6:30 straight, no breaks. Mark is very sensitive to the first drug, Rituxan. They have to infuse it very slowly, that was compounded by the fact we were having complications from his "back poke." As time goes on, this process will get shorter. Mark started the day with the lumbar puncture, and it didn't go so well. It took two tries before it worked. The spaces in between his vertebrae are small, so it made the process difficult. Next time, the best area for access will be mapped a little better so it won't be as bad. It hurt him today, I thought he was going to pass out on me. He hung in there, but later developed a spinal headache that was severe. Since the odds of getting a spinal headache from the lumbar aren't good, they weren't sure if it was the Rituxan causing the headache, so they slowed it down, even stopped it for awhile. Our nurse told us this is the first time in ten years she has seen someone in his scenario get a spinal headache. That Mark, he seems to be drawing all the lucky cards this week. He spent most of the day completely flat, it was the only way to relieve his head.  We had an incredible nurse who made our many hours very comfortable. We love our medical staff! Even the ones with large harpoon needles. Our highlight of the day? We made it into the cool kids club. Dr Hancock teased us about our lack of acceptance initially, but we kept our heads held high. We are in! Mark and I are loving our new Ironman bracelets.

Despite all the drama, his appetite was still raging and he ate more calories than any human should probably ingest in one day. He has only gained 4 lbs back of the 10 lbs he lost. Shocking really, considering his new diet. I am sure it will start showing up here soon. If not, life really isn't fair. I wouldn't mind eating that way once in awhile! The night ended with a bang as he pulled out a few clumps of hair. It is only a matter of time. Mark was in good spirits throughout it all, especially tonight. His headache lightened up and he was able to sit and visit with his good friend all evening. They were still up and having a good time when I got home late. All in all, we really are grateful that today is over. 2 cycles down, 6 to go.

Mark pre-headache

Mark mid-headache

Luck

I never considered myself to be lucky. The only thing I have ever won was a Berenstein Bear book during a Bronco Booty drawing in the first grade. I pretty much thought it was the best day ever. I got to leave class, go to the office, pick up my prize, and learn about strangers from Brother and Sister Bear. My little brother on the other hand, won a car in high school. Yes, that would be my life. Bought a new car, it got hit less than a week later. Both of our horses got out, but Mark's crossed the road safely. I won't bore you with the entire list. Mark, on the other hand, didn't seem to have luck at all. Good or bad. Most everything he has, he has gained through hard work. His life used to be quite boring. Oh boring, I miss you! The only sure thing about luck is that it changes sooner or later. For us, it seems to be sooner.

If you look back at one of my earlier posts, I mentioned a CT scan Mark had done the second day he was in the hospital. The scan went well overall, nothing too serious.  There was a benign looking blemish in his kidney, and a lesion on his hip bone. The lesion was EXACTLY where Dr. Hancock took the bone marrow biopsy, so it seemed too coincidental that the one lesion that showed up happened to be the one place biopsied. Literally, there was a one in a million chance that Mark's bone marrow biopsy would come back positive. We felt assured, and put it out of our minds. Fast forward about two weeks, and as luck would have it, Dr. Hancock indeed took a biopsy of the one lesion Mark had. Yes, Mark's biopsy came back positive. GRRRRRR.

Before I could get too down on our luck, our amazing doctor put it into a new perspective for us. Had he taken the biopsy from Mark's right hip, the results would not have been the same. We would not have had  the entire picture or location of the cancer. Mark would have done 6 cycles and we would have called it good. Sometime later, the cancer would have come back. Honestly, I can't think of anything more depressing than thinking you were done, only to have it come back later. We want this gone--for good. So, this does change Mark's treatment plan. His cancer went from a stage 2B to a stage 4B. We have learned the numbers don't matter much, just Mark's response to treatment. Since his cancer is  fast growing, it also responds quickly and correctly to chemo. That doesn't change with the new development. However, we jumped immediately to 8 cycles. Mark will also receive chemo directly into his spinal fluid affectionately known as a 'back poke". He will get this each time he goes in for his regular chemo treatments. With good advice and reasoning from the doctor, these lumbar punctures will make sure the chemo gets into the central nervous system, a sneaky place where sneaky cancer cells like to lurk undetected, only to manifest themselves at a later date. The bone marrow bridges a nice pathway for cancer cells to infect the central nervous system, even though Mark's initial spinal fluid test came back negative. As I said before, we would rather go overboard and be sure we sought out and killed every possible cell, than leave some of them hanging around to haunt us later.

I told Mark we should think about buying a lottery ticket tonight since we seemed to be the "one' in the one in a million chance. I guess this luck thing has two sides. It is bad that Mark's cancer is further reaching, but how lucky are we that Dr. Hancock biopsied the EXACT location of the lesion? How lucky are we that we caught it now rather than later? How lucky are we that we have a great clinic here in the sticks with amazing physicians and staff? How lucky are we that we are surrounded by amazing family and friends? I won't consider us cursed with bad luck quite yet. In fact, each day Mark and I realize more and more that there isn't much luck in life at all. I remember when I was little, I used to think how lucky that Samuel the Lamanite guy was that not one of those arrows hit him...I missed the boat on that one for awhile (this was around the same time that I thought  "By this 'shalmenno' --ye are my disciples " was some special one word scripture phrase and the coolest part of the song.) Heavenly Father is pretty mindful of us and miracles happen everyday.

Speaking of amazing friends and miracles, we had few brighten our day. One woman, who is struggling with infertility and just got back from her second round of invitro, brought us an amazing care package. How thoughtful considering she has enough on her plate. We also had some special visitors, whom we love, bring both Mark and I our own packages. Don't tell Mark, mine is totally cooler, but his IS special. How many people can say they have a personalized throw-up bucket complete with a handle.

As you can see, the inside even has instructions. I am considering putting a similar message in the bottom of the toilet.  My favorite part was the liter measurements on the side. If Mark starts hitting those numbers, we might be in big trouble. There are even perfect little bags we can use to line the bucket. How clever is that? We hope he doesn't have to use it too much. We will see how this second round goes.

On a completely random note, when I went to get the mail yesterday, I heard some commotion behind me. When I turned around this is what I saw:

That would be my totally cute dog wondering when I was going to come and let her out of her kennel. The snow falls off the roof and piles up so she can reach. She usually isn't tall enough to peek over like that. It made me laugh just a little. I wish more people got that excited to see me. If Mandi had a dog as cool as mine, she wouldn't hate them so bad:) AND she would let it sleep in the laundry room if it was super cold and had arthritis. Mandi, I am just sayin!