Thursday night I made a mistake. I looked at some things online that really scared me. I saw some MD websites that said if lymphoma transforms into a more aggressive cancer, the prognosis is not good. When I read this it was pretty late at night, everyone was in bed (except Lar, who quickly told me I should not be reading that and not everything you read online is not true)
I know not everything I read on the internet is truth, but I still had a moment where I laid in bed and just had the weight of what is going on just drop on me. I was shaking and thinking I really may not be able to control this situation. It was hard getting to sleep that night because I just had to keep myself from letting my mind wander to the worse case scenario.
The next morning I was scheduled to go back to the cancer center for an infusion. As soon as I got there I told the nurse I needed to talk to Dr. V ASAP. They started me on some IV fluids and some anti nausea meds and a steriod. When Dr. V came over to talk to me this is what went down:
ME: Here's what I read online and I'm really scared
DR V : Yes, your lymphoma has transformed from a grade 3 to a grade 4 (which is not the stage, it's more the speed it is growing). Your spinal fluid came back completely clear of cancer which is good. We are going to treat this very agressively, and I expect you to have a full remission.
Now, I know there are no guarantees, but this at least made me feel a little more relaxed. Plus, to be honest, I think she added a little something extra to my IV ! :) Ativan? Maybe?
Anyway, I also explained to her that I was still having bad headaches when I stand up, and feel very weak and tired. Overall, for the last couple of weeks I've either felt just OK, or yucky. I'm a little tired of that.
She scheduled me to come in Saturday for more IV infusion.
My mom and Tom got here Friday night. They came with lots of goodies from family in Salt Lake (thanks so much Salt Lake family ;) My mom went with my Satuday morning for my infusion. When I got there, Dr. V came over and said she had talked to a neurologist and he wanted me to have a blood patch on my spine (I know that sounds kind of gross..but that's what it's called, and this is sort of a medical blog :)
She said that my spinal fluid was leaking from when they did the original spinal tap and they needed to patch it so the headache would go away. Then she said I would go down to radiology in half an hour for ANOTHER SPINAL TAP. Only this time they would take some of my own blood and put it on my spine to create a "patch".
So my mom and I headed down to radiology (and Lar met us there). My mom had a good idea, she pulled out my lidocaine cream I use to numb my port, and she put in on my back where they would do the spinal tap. It did help a little, but I'm not gonna lie, this spinal tap hurt more than the first one. Not so much pain, as it was a ton of pressure on my back. The horrific score for this one went up to an 8. Yowch!
So here we are today. My back is still sore, I'm very weak. I just keep telling my body: Sorry, sorry, hang in there. It's chemo's eve. Tomorrow morning at 9:45am is my first official chemo infusion. Scheduled time: 6 hours. Tonight I will have a friend of mine come over to give me a "new look". A look that I'm not looking forward to, but I know it is inevitable, I'm going to lose my hair. So I'm going to lose it on my terms. That is something I can control.
GOOD THOUGHTS FOR TODAY:
I went to Sacrament meeting today and heard my daughter give her very first youth talk. She wrote it herself and did a wonderful job. Larry was the High Councilor speaker in our ward, so I was able to hear his talk as well.
I call this good "thoughts" (plural) because the closing song in Sacrament was Count your Blessings. And I wanted to mention a few:
1. I'm so lucky to have my family close and able to come and visit and help take care of me. My mom and Tom got so much done this weekend to help me feel ready to start chemo tomorrow.
2. I'm so thankful for Larry's job. His job has been such a blessing to us in so many ways, but for him to be able to leave work to come and be by my side is one of my biggest blessings. I am so thankful for his boss being such an understanding man, and for all his co-workers picking up slack for him while he's gone.
3. Hope's potty taining is coming along. I would say she's a good 96% there. And trust me, that is a huge blessing.
4. Lauren and Josh have been such troopers. It would be so hard to have this all going on your home when you're 9 and 12 years old. We talk a lot about what's going on. I think it's important to be honest about the situation. They're hanging in there. I tell them they're my "Warriors", fighting right along with me.
5. I have to again mention the people around me. Larry mentioned today in his talk that sometimes angels are sent to your aid when you need it. In the scriptures, even Christ has come to someones aid. But a lot of times the aid you need is sent to you in the form of those closest to you. Those who will pick up your life for you, so it doesn't fall when you just can't carry it. They just do it. And I can't think of anything closer to having a gift straight from heaven.