"But on you will go
though the weather be foul...Onward up many frightening creek,
though your arms may get sore
and your sneakers may leak."
~Dr. Seuss
It's been a few weeks since I updated last, and up until this point I haven't felt a lot of motivation. My arms are sore and my sneakers are leaking, but before I get into that, I will give you a quick update since it has been so long.
Update...
Aaron just had his 3rd treatment last Thursday, and it was a week over due. Our schedule has changed and I definitely see how this thing can drag on. If things go without a hitch, Aaron could have been done with his treatments by July, but now it looks like August and if he gets sick, it could even be longer.
I am still amazed at the entire process and all the side effects. It really feels like he is getting a small taste of what it was like to have a baby. Nausea, exhaustion, hair loss (like after the baby), body aches and pains, breathing, uncomfortable, trouble sleeping, and swelling. We joke that he is giving birth to a tumor. He has also named them, Massy and Tumy. So I guess it's twins. Only fraternal, though.
To be honest I think I could do with out the sympathy. I am glad to bear the memories and scars that come from having a baby. I don't like having to watch my husbands body fall apart from this illness.
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The picture above is our shower floor, a few days after his second treatment when it started coming out in clumps. His hair has definitely thinned out, but when others see him they say they don't even notice. (I think now they do.) Below are the stages of hair loss so far. Tonight we are going to buzz his hair. I also have a little surprise for him after. (I will post tomorrow.)
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| Before treatments began. |
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| After the hair started falling out in the shower. |
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| Same day. After a hair cut. |
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| A few days later, plus a top view. |
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| 3/16/2013. Not too bad. See below. (on a side note he doesn't have to shave his face as much and it's a lot smoother as well.) :) |
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| Top View. I think it's more obvious. And yes those are Homer jammies! |
On Aaron's second treatment his white blood cell count had been diminished by 80% so the doctors had to give him a shot to help build his cell count. We call this shot "liquid gold" literally. It is about $6000 for 6 ml. (My kids take more Tylenol than that, and Tylenol is only $7 a bottle.) I don't think we have ever paid that much for any small item including our wedding rings.
The side effects from this shot, made his recovery harder than his first treatment. He had more nausea, more bad days, and the shot created extreme pain in his bones. He said he was on a conference call meeting and fortunately his phone was muted, because when it hit him he yelled. He said it felt like his hips were being pulled back and spread apart. (Hmmm... sounds a little like pregnancy.)
That brings us to his third treatment and the delay. There are blessings and downsides to having the his treatment delayed. But before we go into that, here is the back story.
About a week before his 3rd treatment, he started to develop these boils on his skin and he got a little bit of a cold. At his appointment, his doctor looked at his boil on his leg and said, "it looks pretty angry." (I love that line. LOL) So she said that because he has a lot going on and because he has an "angry boil" that we were going to post pone his treatment a week. In most people, an "angry boil" doesn't sound so bad, but when the immune system is compromised, it can be deadly. So she put him on antibiotics and it took a few days for the anger to settle down and he resumed his 3rd treatment 1 week later.
So the downside is that it extends how long we will be doing treatments. Same amount of treatments, however, instead of being done in July, we are looking at August. (As long as there are no more hiccups.) The blessing because of the delay, his white blood cell count was through the roof. It was higher than even a normal range. HURRAY!!!!! He didn't have to have "liquid gold" this time.
At the same appointment, his doctor felt pretty confident in lowering his Prednizone dose that he's been taking for over a month and within 24 hours his neck and face started to swell again. As mentioned before Aaron has VCS(Vena Cava Syndrome). The Prednizone helps with the inflammation and allows more blood flow, along with that he takes a water pill and blood thinners as part of his treatment because of the swelling and blood clot(s).
He talked to his doctor last Monday and she said that she wanted to see him again soon, because she was concerned. Usually, doctors don't get concerned they usually ask if you're concerned and determine whether it is necessary for a visit based on your concern. I don't know what it means, but Aaron suspects it could be more clots. Lymphoma is a nasty disease. It can make your blood really sticky and therefore cause more blood clots. Since Aaron is still having the swelling symptoms, his doctor moved his PET scan up 2 months so that she can see if things are progressing. Aaron went into his PFT -a lung/breathing function test - appointment today and hopefully we will find out positive results tomorrow. (He feels good about it.)
Sometimes this is really hard to deal with and sometimes we are given small successes to help us keep going. Last week was very hard and emotional. Not only am I dealing with my husband's illness, but it seems like on the good weeks everyone is sick and so we are not getting a lot of relief. It's killing me! Lately, I feel like my spiritual cup is empty and my soul is numb. I have felt like my relationship with my husband, family and God have been strained as well. I feel like I need to make some changes in how I am managing this challenge but have felt at a loss until I was reminded of Aaron's Cancer buddy.
He was a doctor just a couple of years older than Aaron, who was diagnosed with the same disease last year. His wife dealt with the circumstances by maintaining a very structured, ordered schedule. The thought crossed my head that maybe I need to add more structure and order to my life. Maybe that could help me pull out of this funk.
So I have started adding activities into the boys and my life. I have gotten creative on how to achieve some of these things, since money is really tight, and I think it is helping. I have also made more of an effort to connect with God so that I have a place where I can turn. I believe that since I have been trying these things Aaron and I have started to connect again as well. This disease doesn't just effect the health of my best friend it effects everything we are doing. It is a lot harder than I anticipated.
God really has been listening to my prayers. I have asked for help to get me out of this dark place and I have tried to do my part by searching for the answers through reading the scriptures and prayer. I have also opened up to my husband about my struggle and talking to him helps me to see outside myself instead of always curling up inside. I have to admit the biggest revelation, with my struggle, came to me over this last weekend.
While I was looking for a story to tell my kids, I came across this unauthored web page of stories of people who remember our life in heaven before we came to earth. The author had a vision about our lives before we came to Earth, and went into detail about his/her experience there. They talked about how important love was and Christ and that we all came here knowing and choosing some of the challenges and weaknesses we face. Some came here to not live very long in order to help others achieve what they were meant to achieve. And others lived longer to help provide service to those along the way. Some would come handicapped and others would end up homeless, but all with a purpose to allow others an opportunity to help or be better (To serve each other). We all came here excited to experience this life and go through the challenges that were arranged for us. We were also given tools from Heavenly Father to help us in this life, to help us overcome our weaknesses but it is up to us to use them or not use them. It is our choice. This life has a great purpose in providing us an education that we could have in no other way obtained. We are intentionally brought here without our memories of our lives before and we are given tests and trials to gain experience and knowledge. These are things that I believe in, through my own study, prayer and pondering on things that I learn from the scriptures and church. But this article reminded me of what I was forgetting.
Then, later that weekend, I was listening to a talk from someone in my church and they relayed a story about a couple. Six weeks after they were married, they were informed that the husband had bone cancer and his odds of beating it were not good. When a member of their congregation talked to them he felt impressed to ask them if they had faith in Christ and in Heavenly Father's plan and if they had faith not to be healed. Usually, in circumstances like this it is customary to ask if they have faith to be healed, but the speaker said he felt impressed to ask if he had faith not to be healed. He went on to talk to them about that, which meant that the couple had to trust that God was in control and he knows what is best for each of us. The husband did survive but it taught them a very valuable lesson.
The story struck me really hard, because in my prayers I had been asking God to save my husband for my very young children; to allow them the opportunity to know their father. I didn't want God to take Aaron even if it was part of his plan, that I felt an injustice to my boys if Aaron could not help me raise them. I realize after this weekend, I lost my faith in the things I believed. That is where my emptiness comes from. I realize that I need to trust that God knows what is best for all of us and those things we need, to help us achieve all that he wants us to achieve and all that we can achieve. Just like in the article, how do I know that Aaron's life isn't meant to be short, that it wouldn't help myself or my boys to be something more or even help someone else. Now let me preface this by saying I don't believe he is going to die and I don't believe it is part of Heavenly Father's plan for our family. Although it could be, because I don't know his plan for us, but I don't believe it is. However, I do believe this challenge was part of my test. And I believe it is teaching me to trust in Heavenly Father's plan and know that no matter what happens in this life it is to either help us be better or help others be better and maybe a little of both. While I was sitting quietly on the computer the other day, my oldest son (4 years old) said, out of the blue,"Mommy! Daddy's not going to die." I asked him why he said that. I have tried to keep those feelings from being said or mentioned around my boys. I think maybe he has sensed my worry. But when he said it I felt a little bit of joy, my hope is that maybe it was a message from God to bring me relief. I like to believe that God knew my concerns and to hear from my child, out of the blue, gave me what I needed to lift this burden of darkness that has surrounded my life these past few weeks. And even though this journey is long from being over, I am sure the weather will be foul again with more frightening creeks, and my arms will get sore again and my sneakers will leak, but I know now that I will go on, ONWARD and UPWARD!
