I've turned the corner...HOORAY!
Tuesday afternoon I still felt pretty crummy. I called my doctor because I was just so sick of being sick. She called me in a couple of prescriptions to try (one was Prilosec for my stomach and the other was Decadron steroid for the achiness). I came home and took both pills. I don't know if it was a combination of that, or just timing...but Tuesday night I started feeling better.
Wednesday I woke up with a slight headache, took some Tylenol, and then felt great all day. I felt like myself more than I have in weeks and weeks. I went to see Dr. V yesterday and had some blood work done to see if my white blood cells have come back up. I should hear back from her today on that, but judging how I've felt, THEY'RE BACK!!!
The only thing I'm still struggling with is sleep. I guess being on steroids really messes with your sleep. So having gone off the high dose of Prednisone I was on, and then being put on a very small dose of Decadron is wreaking havoc on my sleep cycle. Even taking "sleep aids" is not helping. Last night I went to bed at 10pm. I put the book down I had been reading at 12:30am. I fell asleep until 2:30am and then was up for the day. Weird thing is...I'm not super tired. Today I'm going off ALL steroids, so it should be interesting to see if I crash :)
Well, today while I'm still feeling energetic, I'm going to do Sam's Club / Walmart day. I'm looking forward to contributing a little around here. It's also funny how this kind of day sounds fun. I've just noticed while I was down, it's the little things I really missed doing.
my mini list of "little things" I missed doing
1. Doing Hope's hair
2. playing Wii with josh
3. cleaning (yes I missed doing this)
4. Saturday outings with Lauren (going to the mall / Pretzelmaker)
5. Date nights with this cute guy I live with
6. mostly just interacting with my kids day to day
Here's what I've figured out. I think that during this "chemo" process I will have a week or so of feeling horrible, and then a couple of weeks of feeling good. I'm hoping that is how things go. I'm going to take it one treatment at a time, but hope for the best. I know I still have to be careful (immune system wise). Dr. V said if I get an infection at all I would have to be admitted to the hospital. Unfortunately, THAT does not fit into my schedule :) But with ((fingers crossed)) I'm going to live my life as much as possible while I'm feeling good, and take time off to be sick when I'm sick...and get through this chemo stuff.
Happy Halloween this weekend. Don't forget to check all the chocolate your kids bring home in their bag (and by that I mean take a bite)! Mmmmmmm
Thursday, October 28, 2010
Tuesday, October 26, 2010
Working on a schedule
So far I've figured out...the only guarantee with chemo is, there is NO guarantee. There has been no consistence. Last week was my full chemo week. Some days I would start to feel a little better, only to feel horrible by bedtime. Where others days I woke up feeling bad, but was able to get up and get out and about.
They say (they- being the cancer professionals) that I will get a schedule where I know when I'm going to feel good, and when I won't. So far, I'm still working on that schedule.
On Friday afternoon my mom and SIL Tashia flew down to help for the weekend. I had a lab apt on Friday to see how my kidneys were functioning after that first round. I actually was feeling pretty yucky that day. After we got home from the airport I got a phone call from Dr. Chipman (oncologist) and he said my labs looked great. He said my kidneys were functioning perfectly (big shout out to my kidneys "GO KIDNEYS").
That did help to hear some good news.
On Saturday, Larry went to work and the rest of us got ready to go to "Truck or Treat" here in Fruita. The kids got to wear their costumes and trick or treat. I felt up to going, and it was nice to get out. That's the first time I've really been out on probably over 3 weeks. I'm not sure which is harder..feeling sick and laying down all the time...or sick of laying down all the time.
While we were out I all the sudden was craving a big breakfast. Fried eggs, hash browns, toast, bacon. If you know me, you know I don't typically like breakfast food. But my mom took me right over to IHOP and I ordered (and ate) an entire breakfast. My appetite is so weird right now. I'm usually only hungry for one meal a day. And who knows what that meal is going to be. Weird things sound good. Last week my mouth was pretty numb and I couldn't really taste food. This week I'm starting to be able to taste again.
For the most part, I've been able to control any nauseousness. I get sick to my stomach, and then I take meds to help with that. Lar gives me about 8 pills first thing in the morning to help with chemo side effects.
Overall, I just feel achy and sort of flu like. I'm really hoping this week I get better and better. I really need to feel good in between rounds. It just feels like I've been sick for a month (I guess I sort of have). But hopefully I will find a schedule where there will be lots of days in between rounds where I will feel somewhat normal.
GOOD THOUGHT:
I had such a wonderful gift sent to me. A family friend in Utah, Joni, owns a head covers shop. She called and told me she wanted me to have a wig. My mom brought down about 20 different wigs for me to try. It was so fun to try different styles. But then, I put one of the wigs on, and it was almost exactly my hair style. I looked in the mirror and it looked like me. The pre-cancer me. I was so excited because I feel like it will give me the chance to go out and not always feel like I HAVE CANCER. It's going to be very surreal when the day comes that I lose my hair. But besides the wig, I have had friends make me hats (with cute flowers), plus Joni sent some adorable hats and head wraps that my family from Utah bought for me.
I know there are so many wonderful people that are put right in my path right now and have been able to make this journey so much easier for me. No matter how hard this feels, I know someone else had gone through this, and had an even harder time because they did not have the support that I have had. My goal is to get feeling so good (eventually) that I can start trying to pay back all the wonderful people in my life.
My kids made me a "kemo" pillow, and my mom made me a blanket to take with
me to treatments.
(I took this picture of Lar)
(and Lar took this picture of me. I'm sure I was saying "Make sure you get my good side" :) I'm also hooked up to my port here)
part of the chemo treatments.
They say (they- being the cancer professionals) that I will get a schedule where I know when I'm going to feel good, and when I won't. So far, I'm still working on that schedule.
On Friday afternoon my mom and SIL Tashia flew down to help for the weekend. I had a lab apt on Friday to see how my kidneys were functioning after that first round. I actually was feeling pretty yucky that day. After we got home from the airport I got a phone call from Dr. Chipman (oncologist) and he said my labs looked great. He said my kidneys were functioning perfectly (big shout out to my kidneys "GO KIDNEYS").
That did help to hear some good news.
On Saturday, Larry went to work and the rest of us got ready to go to "Truck or Treat" here in Fruita. The kids got to wear their costumes and trick or treat. I felt up to going, and it was nice to get out. That's the first time I've really been out on probably over 3 weeks. I'm not sure which is harder..feeling sick and laying down all the time...or sick of laying down all the time.
While we were out I all the sudden was craving a big breakfast. Fried eggs, hash browns, toast, bacon. If you know me, you know I don't typically like breakfast food. But my mom took me right over to IHOP and I ordered (and ate) an entire breakfast. My appetite is so weird right now. I'm usually only hungry for one meal a day. And who knows what that meal is going to be. Weird things sound good. Last week my mouth was pretty numb and I couldn't really taste food. This week I'm starting to be able to taste again.
For the most part, I've been able to control any nauseousness. I get sick to my stomach, and then I take meds to help with that. Lar gives me about 8 pills first thing in the morning to help with chemo side effects.
Overall, I just feel achy and sort of flu like. I'm really hoping this week I get better and better. I really need to feel good in between rounds. It just feels like I've been sick for a month (I guess I sort of have). But hopefully I will find a schedule where there will be lots of days in between rounds where I will feel somewhat normal.
GOOD THOUGHT:
I had such a wonderful gift sent to me. A family friend in Utah, Joni, owns a head covers shop. She called and told me she wanted me to have a wig. My mom brought down about 20 different wigs for me to try. It was so fun to try different styles. But then, I put one of the wigs on, and it was almost exactly my hair style. I looked in the mirror and it looked like me. The pre-cancer me. I was so excited because I feel like it will give me the chance to go out and not always feel like I HAVE CANCER. It's going to be very surreal when the day comes that I lose my hair. But besides the wig, I have had friends make me hats (with cute flowers), plus Joni sent some adorable hats and head wraps that my family from Utah bought for me.
I know there are so many wonderful people that are put right in my path right now and have been able to make this journey so much easier for me. No matter how hard this feels, I know someone else had gone through this, and had an even harder time because they did not have the support that I have had. My goal is to get feeling so good (eventually) that I can start trying to pay back all the wonderful people in my life.
me to treatments.
Thursday, October 21, 2010
I can do this....did I really just say that?
I've now had my official first round of chemotherapy. I'm in the fight now. There are some things I expected, and some things I did not. I expected to feel really sick, but I'm actually managing the nausea for the most part. I am tired and feel run down, but today I'm up and around.
So, here's how chemo went:
I am on a very aggressive chemo treatment called R-CHOP.
Drugs in the R-CHOP Regimen
The R-CHOP acronym is composed of the following drugs:
Rituximab
Cyclophosphamide
Hydoxydaunorubicin (doxorubicin)
Oncovin (vincristine)
Prednisolone
Cyclophosphamide
Hydoxydaunorubicin (doxorubicin)
Oncovin (vincristine)
Prednisolone
Each of these drugs has it's own set of side effects, but each drug also has an important part in killing the cancer.
I was not able to have my full dose of the Rituxin, so I will have to try that one on the next round. When I went back to infusion on Tuesday, I was hooked up to IV fluids. I took the prednisone by pill, one of the drugs was in an IV bag, and the other 2 were in large syringes that ONC nurse would push manually into my IV.
The drug that has me the most nervous in the one that comes in a large syringe. The medicine itself is bright red. It's one of the harshest drugs. It's the one that makes you lose your hair. But it's also the one that aggressively fights the cancer. As the nurse was giving me that medicine I decided to think of that as the "river of life". As it was going in, I just thought of it going right to the cancer cells and killing them. I am going to think of it as a positive drug going in to help me kill the cancer. I think if I look at is an ally, it will help me deal with the side effects it causes.
After the CHOP drugs were give, I felt OK. I came home that night and rested. I was tired, but not "sick".
Yesterday I went back to infusion for the last portion of the treatment which is a NEULASTA shot. This is a really important part of the treatment because after Tuesday, I have lots of things inside my body killing off my healthy white blood cells. The NEULASTA is medicine that "forces" my bones to produce new healthy cells at a rapid pace. There are 2 down sides to this and one huge up side.
Down sides: 1. It's a shot...in your tummy (ouch). 2. It causes your bones to really ache.
HUGE UPSIDE: It helps me from getting infection and starts rebuilding my immune system.
So, here I am today. Last night was a miserable night. I felt like I was full of all kinds of pills / meds / chemo / shots. I was achy and tired. I went to bed at 7:30pm. I didn't actually "go to sleep" though because I think the prednisone keeps you awake. Larry had gone to watch Lauren cheer at the Super Bowl at Stoker Staduim. I was hoping to be able to go watch her cheer in her final game, especially since it was at the college, but there was no way I was going anywhere last night. When Lar got home he gave me an Ambien so I could sleep and I slept through the night. I was hot and sweaty when I went to sleep (chemo causes hot flashes), and then I woke up this morning cold. I got out of bed this morning and realized I cannot stand up straight. They told me the bones that would hurt the most are your large bones, and for me, it's my lower back. So I'm moving slow today and plan on just resting.
GOOD THOUGHT:
I can do this. This is doable to me. I don't think chemo is like it used to be. I think it's a lot easier to tolerate. I know I'm just starting up a rocky road, and I plan on things getting a little tougher. But I can do this. I plan on coming out the end cancer free and stronger than ever.
PS: The Cowboys won the super bowl last night. GO COWBOYS!!!!
I remember when I was a cheerleader and our high school team went all the way to the state playoffs and we got to play / cheer on the University of Utah football field. And we won that game! Such an awesome experience!
Monday, October 18, 2010
The littlest things mean the very most
This morning I woke up and I realized it was "D" day. Or should I say "C" day?
Larry was already up and had gotten the big kids off to school. When I looked over in the spot where he had been laying in bed I say my little friend Hope. I was actually glad to see her there. I watched her sleep so peacefully all snuggled in warm. I realized that I am still first and foremost a mommy. I'm a mommy and I have cancer. They are two separate things. When Hope woke up she looked at me a little strange. I forgot she had already gone to bed the night before when my friend Natalie came over to cut my hair (I ended up getting what Larry calls a 'Annie Lennox' hair style-very short, but not buzzed). When Hope looked at me she kind of giggled and said "Oh, Mommy! You cute hair short". She said it a few other times, and that was that. No big deal. But I'm glad she liked it. I think it could have been a little scarier had I shaved it completely off. I think this gradual process will be easier on us all.
So, Larry sent Hope off to Alissa's to have a fun day. They were going to the dinosaur museum. So all morning Hope kept roaring, getting ready to see the dinosaurs.
Larry and I headed into the cancer center for my first real and true chemotherapy. I first had a consult with Dr. V. We had an interesting talk about bone marrow transplant (which is not something I would do right now because of the risk, but it is a possible cure for me in the future...) Anyway, then I went over and got set up for my infusion.
You sit in big, over sized recliner chairs that heat and vibrate. You have your own personal TV over head to watch. I had a cozy new blanket my mom had made for me this weekend, and a homemade pillowcase Lauren and Josh made for me last night. I was set. You would think I was in the lap of luxury if you paid no mind to the IV of poison connected directly to my heart. :) And then we started to wait..... (this was at about 10am)
At around 10:20 the ONC nurse came over and gave me my "pre-meds". It was about 10 pills I needed to take. Some were pain pills, some were steroids, a Benedryl, some anti nausea, another Ativan....etc.
It still seems so strange to me, since I'm a girl that would take 1 or 2 Ibuprofen for a headache. Now I'm taking 10 pills to protect my organs, etc.
I waited again until about 12:00 the nurse brought over my first real infusion. It is Rituxin which is an immunotherapy type drug. This is the one that takes 5-6 hours to put in because you have to watch for side effects.
About 45 minutes into that infusion, my throat started to get really scratchy and feel weird. The nurse stopped the Rituxin and had DR. V come over. Dr. V said it was common to have an allergic reaction because your body just doesn't want all the crap pumped into you (can you imagine?) So she gave me a big shot of Benedryl. Then we started to infusion again at about 2:00. I was sound asleep (thanks to the Benedryl) and all the sudden I could not breath. It felt like someone had closed my wind pipe off. And I felt hot and itchy. 4 or 5 nurses ran over and sat me up and shut off the infusion. Dr. V came over to listen to my lungs. When she lifted up my shirt she said I had welts all my back. My face had swollen up and was bright red. I had welts all over my face and neck as well. I guess my body really didn't like the Rituxin.
Well, 2 more hours later, and more Benadryl, the hives went away. Dr. V said she wanted me to go home tonight and rest. And then I will go back tomorrow for the rest of my chemo infusion. We will wait to try Rituxin again in 3 weeks with my next cycle. She said I should tolerate it better, when some of the tumors I have have shrunk down.
So................I don't know if it really counts that I had some chemo today. I feel pretty wiped out and tired. Tomorrow at 1:00 I go back for the rest of the chemo.
GOOD THOUGHT:
It's been a very long day. I know I have not had time to personally respond to all your wonderful messages and phone calls. But I read them all, and they make me feel so good. I am surrounded by the most stellar people.
Some people have said they just are not sure what we need, or how to help. Please know, you are helping just by keeping us in your thoughts and prayers. In a situation such as this, the littlest things mean the very most.
(This is not me :) But this is about my hair length now..maybe even a little shorter! )
A Conference Talk I Love
Larry was already up and had gotten the big kids off to school. When I looked over in the spot where he had been laying in bed I say my little friend Hope. I was actually glad to see her there. I watched her sleep so peacefully all snuggled in warm. I realized that I am still first and foremost a mommy. I'm a mommy and I have cancer. They are two separate things. When Hope woke up she looked at me a little strange. I forgot she had already gone to bed the night before when my friend Natalie came over to cut my hair (I ended up getting what Larry calls a 'Annie Lennox' hair style-very short, but not buzzed). When Hope looked at me she kind of giggled and said "Oh, Mommy! You cute hair short". She said it a few other times, and that was that. No big deal. But I'm glad she liked it. I think it could have been a little scarier had I shaved it completely off. I think this gradual process will be easier on us all.
So, Larry sent Hope off to Alissa's to have a fun day. They were going to the dinosaur museum. So all morning Hope kept roaring, getting ready to see the dinosaurs.
Larry and I headed into the cancer center for my first real and true chemotherapy. I first had a consult with Dr. V. We had an interesting talk about bone marrow transplant (which is not something I would do right now because of the risk, but it is a possible cure for me in the future...) Anyway, then I went over and got set up for my infusion.
You sit in big, over sized recliner chairs that heat and vibrate. You have your own personal TV over head to watch. I had a cozy new blanket my mom had made for me this weekend, and a homemade pillowcase Lauren and Josh made for me last night. I was set. You would think I was in the lap of luxury if you paid no mind to the IV of poison connected directly to my heart. :) And then we started to wait..... (this was at about 10am)
At around 10:20 the ONC nurse came over and gave me my "pre-meds". It was about 10 pills I needed to take. Some were pain pills, some were steroids, a Benedryl, some anti nausea, another Ativan....etc.
It still seems so strange to me, since I'm a girl that would take 1 or 2 Ibuprofen for a headache. Now I'm taking 10 pills to protect my organs, etc.
I waited again until about 12:00 the nurse brought over my first real infusion. It is Rituxin which is an immunotherapy type drug. This is the one that takes 5-6 hours to put in because you have to watch for side effects.
About 45 minutes into that infusion, my throat started to get really scratchy and feel weird. The nurse stopped the Rituxin and had DR. V come over. Dr. V said it was common to have an allergic reaction because your body just doesn't want all the crap pumped into you (can you imagine?) So she gave me a big shot of Benedryl. Then we started to infusion again at about 2:00. I was sound asleep (thanks to the Benedryl) and all the sudden I could not breath. It felt like someone had closed my wind pipe off. And I felt hot and itchy. 4 or 5 nurses ran over and sat me up and shut off the infusion. Dr. V came over to listen to my lungs. When she lifted up my shirt she said I had welts all my back. My face had swollen up and was bright red. I had welts all over my face and neck as well. I guess my body really didn't like the Rituxin.
Well, 2 more hours later, and more Benadryl, the hives went away. Dr. V said she wanted me to go home tonight and rest. And then I will go back tomorrow for the rest of my chemo infusion. We will wait to try Rituxin again in 3 weeks with my next cycle. She said I should tolerate it better, when some of the tumors I have have shrunk down.
So................I don't know if it really counts that I had some chemo today. I feel pretty wiped out and tired. Tomorrow at 1:00 I go back for the rest of the chemo.
GOOD THOUGHT:
It's been a very long day. I know I have not had time to personally respond to all your wonderful messages and phone calls. But I read them all, and they make me feel so good. I am surrounded by the most stellar people.
Some people have said they just are not sure what we need, or how to help. Please know, you are helping just by keeping us in your thoughts and prayers. In a situation such as this, the littlest things mean the very most.
A Conference Talk I Love
Sunday, October 17, 2010
It's Chemo's Eve
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.
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.
Thursday, October 14, 2010
One foot in front of the other
I did not feel good yesterday. I was either asleep, or trying to sleep. I think most of my problem was a headache that would hit every time I stood up. I had a lot of dizziness as well. And some nausea.
I had a good nights sleep and thought today would be better. I woke up feeling about the same. So earlier today I called Dr. V and told her how I was feeling. She said I was dehydrated as well as suffering some some side effects from the spinal tap as well as the chemo that was give to me during the spinal tap.
She had come down to get some IV fluids and also some anti nausea medication. I was sitting in the "chemo" department. I've walked by it several times of the last couple of years. But for some reason I never really pictured myself there.
When I found out I was going in to have IV fluids, I put some lidocaine on my skin where the port is. I figured if anything it would take the edge off. But I was very pleasantly surprised when the nurse said "take a deep breath while I put the needle in", and then she said "OK, I'm done". I felt nothing. NOTHING. Not even pressure. I was so glad about that.
Then Dr. V. came over to talk with Larry and I. She said they received some info back on the lymph node biopsy and it looks like my slow growing lymphoma has transformed into a more aggressive lymphoma. Because of that, she wants to change my chemo to a more aggressive chemo and start first thing Monday morning. I will be getting R-CHOP chemo. She said she expected the cancer to respond to this, and we're looking for a full remission. I will have chemo once every 3 weeks for 6 cycles.
Again, this is one of the times, I just put one put in front of the other and move forward. I will go in tomorrow for more IV fluids, some anti nausea meds and also an echo test of my heart.
I had a wonderful opportunity to have my Stake President come by my home tonight and give me a Priesthood blessing. It was such a wonderful way for me to feel uplifted and strengthened. It was a strong reminder of something I already knew; Heavenly Father is in charge. But He is also with me. He would not leave me alone to go through this, just as I would never have one of my children go through something like this without being by their side, holding their hand. A parent's love is so unbelievableably strong, and can only compare in such a small way with the love our Father in Heaven has for each of us. This is how I know I'm in good hands. I have no doubt.
I think, when you are the one going through something like this, there is an element of guilt that goes right along with it. Guilt that I can't take care of my family like I would like. Guilt that I have to ask so much of others. Guilt that I'm not letting people help me. But hearing the words in my blessing and in my husbands blessing confirmed to me that those around me are given the strength they need. I really needed to hear that, because I've already decided I'm going to fight like h - e - double hockey sticks. But I need to know that those around me are going to be OK. I've been telling those around me "I'll be the brave one, you be the strong one".
GOOD THOUGHT FOR TODAY:
If this cancer thought it was going to get the best of me...well. it's got another thing coming. I believe in the power of prayer. I believe in the tender mercies of God. I believe in miracles.
I had a good nights sleep and thought today would be better. I woke up feeling about the same. So earlier today I called Dr. V and told her how I was feeling. She said I was dehydrated as well as suffering some some side effects from the spinal tap as well as the chemo that was give to me during the spinal tap.
She had come down to get some IV fluids and also some anti nausea medication. I was sitting in the "chemo" department. I've walked by it several times of the last couple of years. But for some reason I never really pictured myself there.
When I found out I was going in to have IV fluids, I put some lidocaine on my skin where the port is. I figured if anything it would take the edge off. But I was very pleasantly surprised when the nurse said "take a deep breath while I put the needle in", and then she said "OK, I'm done". I felt nothing. NOTHING. Not even pressure. I was so glad about that.
Then Dr. V. came over to talk with Larry and I. She said they received some info back on the lymph node biopsy and it looks like my slow growing lymphoma has transformed into a more aggressive lymphoma. Because of that, she wants to change my chemo to a more aggressive chemo and start first thing Monday morning. I will be getting R-CHOP chemo. She said she expected the cancer to respond to this, and we're looking for a full remission. I will have chemo once every 3 weeks for 6 cycles.
Again, this is one of the times, I just put one put in front of the other and move forward. I will go in tomorrow for more IV fluids, some anti nausea meds and also an echo test of my heart.
I had a wonderful opportunity to have my Stake President come by my home tonight and give me a Priesthood blessing. It was such a wonderful way for me to feel uplifted and strengthened. It was a strong reminder of something I already knew; Heavenly Father is in charge. But He is also with me. He would not leave me alone to go through this, just as I would never have one of my children go through something like this without being by their side, holding their hand. A parent's love is so unbelievableably strong, and can only compare in such a small way with the love our Father in Heaven has for each of us. This is how I know I'm in good hands. I have no doubt.
I think, when you are the one going through something like this, there is an element of guilt that goes right along with it. Guilt that I can't take care of my family like I would like. Guilt that I have to ask so much of others. Guilt that I'm not letting people help me. But hearing the words in my blessing and in my husbands blessing confirmed to me that those around me are given the strength they need. I really needed to hear that, because I've already decided I'm going to fight like h - e - double hockey sticks. But I need to know that those around me are going to be OK. I've been telling those around me "I'll be the brave one, you be the strong one".
GOOD THOUGHT FOR TODAY:
If this cancer thought it was going to get the best of me...well. it's got another thing coming. I believe in the power of prayer. I believe in the tender mercies of God. I believe in miracles.
Tuesday, October 12, 2010
No sugar coating tonight
Tonight I'm sick.
The surgery went well this morning. I came out of the anesthesia feeling pretty good. The surgery was at 7am and I was home by 10am. I took it easy today, but I feel like I've just felt worse and worse and the day has gone by.
I think the events of the last 7 days have just caught up with me. I'm sore. The nurse blew my vein when she put my IV in for the surgery and I have a 4" black / blue circle on my forearm.
Larry has spent the day keeping things up and going around here today, and I am so thankful for his help.
I have 2 good friends that are pharmacists. I wish I could call them right now and see if it's OK to take Ambien with Lortab. But I think it's too late.
Tonight I feel like I have cancer.
Good Thought:
I have wonderful friends helping me out. My needs and my families needs are being met. Now I am going to focus on feeling better. Tomorrow is a new day!
The surgery went well this morning. I came out of the anesthesia feeling pretty good. The surgery was at 7am and I was home by 10am. I took it easy today, but I feel like I've just felt worse and worse and the day has gone by.
I think the events of the last 7 days have just caught up with me. I'm sore. The nurse blew my vein when she put my IV in for the surgery and I have a 4" black / blue circle on my forearm.
Larry has spent the day keeping things up and going around here today, and I am so thankful for his help.
I have 2 good friends that are pharmacists. I wish I could call them right now and see if it's OK to take Ambien with Lortab. But I think it's too late.
Tonight I feel like I have cancer.
Good Thought:
I have wonderful friends helping me out. My needs and my families needs are being met. Now I am going to focus on feeling better. Tomorrow is a new day!
Monday, October 11, 2010
There's a lot you can learn from even bad experiences
The most amazing thing happened. I woke up this morning and felt like my old self. I didn't feel sore or tired. I had lots of energy. It was such a nice change. I got lots of things done around the house.
I just kept thinking what a bummer it was to feel so good, knowing that I had a spinal tap coming up. I sort of wanted to jump in my car and drive myself to Vegas (or somewhere far away from the hospital anyway) :)
So, at 1:00 Lar came home and picked me up for my appt. We had the spinal tap scheduled at 2:00 and then I had an consult with the surgeon scheduled at 4:00 to try to set up my surgery.
Here's how the spinal tap went: I went back into the room and the radiologist came in. He had me lay on my stomach on a "floating" kind of hospital bed. Larry was able to stay in with me the whole time. I truly anticipated the procedure to be a 10 out of 10 on the horrific scale (even the lady who checked us in and asked what I was being seen for cringed and said "ooohh, that sounds painful" when I told her I was there for a spinal tap) (You can admit it, you cringed too) (but isn't it her job to not say that?? :)
Anyway, the next part was the "numbing" park. It felt like a couple little bee stings in my lower back. And then I just held on to Lar's hand as tight as I could waiting for the horrible pain I knew was coming. But it never really came. It was a little uncomfortable at best. The worst part was waiting to get enough spinal fluid. They wait for it to naturally drip out, which is where the floating table comes in. The adjust the table to kind of tilt your body so gravity takes over. You may, or may not have ever wanted to know this but...did you know that your spinal fluid is crystal clear. Like water. The doctor filled up 4 vials, and I thought they were empty, but then he explained how clear the fluid is. Hmmmm. Who knew?
Then at the end, he put some "chemo" drugs back into my spine. He said if there were any microscopic cancer cells that that would kill them. So I guess I officially had my first chemo treatment today. Whew! Glad that's over! I would say that whole procedure ended up being a 6.5 on the horrific scale. Larry may disagree with me since it took 30 minutes for the circulation to return to his hand. ;)
After the spinal tap I had to lay flat on my back in recovery for 30 minutes to make sure I didn't get a "spinal headache". Then we were off to our next appt.
I was glad the surgeon could get me in so quickly for a consult. I had planned on telling him how I needed to have the surgery this week because I absolutely have to stay on schedule to be done by Christmas and yaddy-yadda-yadda. I was just gonna tell him.
So he came in, talked for 2 minutes about the surgery and then said "Do you want to do it tomorrow at 7am?" And I said "I'll have to check my schedule!" j/k
Just kidding about the check my schedule part! I'm going in tomorrow at 6am to have the surgery at 7am.
He said it would be about a 2 hour surgery. And then it will take about a week to get the results back. That would put me having chemo starting next week if we stay right on schedule. Oh wait, I mean having MORE
chemo...remember I already got the first one over with today!
GOOD THOUGHT FOR TODAY:
Talking to my friend tonight, she asked me if I ever get mad or feel bad and I told her that I usually only allow myself a day to feel bad because it takes a lot of energy to have those feelings (mad, sad, scared etc). And having those feelings doesn't change my situation. So instead, I reserve my energy for having fun with my family and for thinking of things I can personally gain from this experience. As it turns out, there's a lot you can learn from even bad experiences. And the truth is, no matter what your situation is, remember..it could always be worse. People go through things way harder than I do every single day. When I look at it that way, I realize...I am blessed.
PS: Every thought and prayer sent my way has been felt and truly appreciated! ~♥~
I just kept thinking what a bummer it was to feel so good, knowing that I had a spinal tap coming up. I sort of wanted to jump in my car and drive myself to Vegas (or somewhere far away from the hospital anyway) :)
So, at 1:00 Lar came home and picked me up for my appt. We had the spinal tap scheduled at 2:00 and then I had an consult with the surgeon scheduled at 4:00 to try to set up my surgery.
Here's how the spinal tap went: I went back into the room and the radiologist came in. He had me lay on my stomach on a "floating" kind of hospital bed. Larry was able to stay in with me the whole time. I truly anticipated the procedure to be a 10 out of 10 on the horrific scale (even the lady who checked us in and asked what I was being seen for cringed and said "ooohh, that sounds painful" when I told her I was there for a spinal tap) (You can admit it, you cringed too) (but isn't it her job to not say that?? :)
Anyway, the next part was the "numbing" park. It felt like a couple little bee stings in my lower back. And then I just held on to Lar's hand as tight as I could waiting for the horrible pain I knew was coming. But it never really came. It was a little uncomfortable at best. The worst part was waiting to get enough spinal fluid. They wait for it to naturally drip out, which is where the floating table comes in. The adjust the table to kind of tilt your body so gravity takes over. You may, or may not have ever wanted to know this but...did you know that your spinal fluid is crystal clear. Like water. The doctor filled up 4 vials, and I thought they were empty, but then he explained how clear the fluid is. Hmmmm. Who knew?
Then at the end, he put some "chemo" drugs back into my spine. He said if there were any microscopic cancer cells that that would kill them. So I guess I officially had my first chemo treatment today. Whew! Glad that's over! I would say that whole procedure ended up being a 6.5 on the horrific scale. Larry may disagree with me since it took 30 minutes for the circulation to return to his hand. ;)
After the spinal tap I had to lay flat on my back in recovery for 30 minutes to make sure I didn't get a "spinal headache". Then we were off to our next appt.
I was glad the surgeon could get me in so quickly for a consult. I had planned on telling him how I needed to have the surgery this week because I absolutely have to stay on schedule to be done by Christmas and yaddy-yadda-yadda. I was just gonna tell him.
So he came in, talked for 2 minutes about the surgery and then said "Do you want to do it tomorrow at 7am?" And I said "I'll have to check my schedule!" j/k
Just kidding about the check my schedule part! I'm going in tomorrow at 6am to have the surgery at 7am.
He said it would be about a 2 hour surgery. And then it will take about a week to get the results back. That would put me having chemo starting next week if we stay right on schedule. Oh wait, I mean having MORE
chemo...remember I already got the first one over with today!
GOOD THOUGHT FOR TODAY:
Talking to my friend tonight, she asked me if I ever get mad or feel bad and I told her that I usually only allow myself a day to feel bad because it takes a lot of energy to have those feelings (mad, sad, scared etc). And having those feelings doesn't change my situation. So instead, I reserve my energy for having fun with my family and for thinking of things I can personally gain from this experience. As it turns out, there's a lot you can learn from even bad experiences. And the truth is, no matter what your situation is, remember..it could always be worse. People go through things way harder than I do every single day. When I look at it that way, I realize...I am blessed.
PS: Every thought and prayer sent my way has been felt and truly appreciated! ~♥~
Sunday, October 10, 2010
I hope I'm half the friend
** This is a clarification post from a previous post ****
I ran into my friend Sue at the football game. She came over to see how things were going, and she asked "Who is your friend Larry that is going with you?" She was confused because she thought if it were my husband Larry, I would have called him my husband. Makes sense! Well, here's my reasoning:
Larry has been my husband for a little over 17 years. And he's earned that title.
But Larry has been my friend, my very bestest friend for the last 22 years. So the friendship title came first.
He's the kind of friend that works hard all day, and then comes home and sees that I'm tired and immediately starts cleaning or making dinner. He'll go out and pick all the fresh vegetables out of my garden (that he planted) and bring them in for me...even though he doesn't eat ANY of it.
He goes with me to every single doctors appt, scan, surgery, procedure. He holds my hand (when he's allowed to come in) even though one time ( years and years ago, like in 1994) he went to the ER with me because I had leg aches << very funny story>>, anyway when they talked about taking a blood sample, I looked and my friend Larry had passed out. :)
He encourages me to be brave. He takes over all parenting when I don't feel up to it. He's an amazing father to our 3 kids, and they would also consider him a friend.
Sometimes, at night, I will watch him from the family room as he cleans up the dishes from dinner. I think how he's been at work today, from 6:30am - 5pm and this should be his time to rest. But he's always so willing to step up and get things done when I'm not able to. Not only does he NOT complain one single time, but he'll then look over at me and say "Can I get you a drink? Do you want some water with orange slices in it, like you like?"
Yesterday I mentioned how nice it would be if we could fit both vehicles in the garage. My car was in, but on his side there was all our "summer" play toys, bikes, remote control cars, there was scrapbooking stuff, food storage, etc. Before I knew it, he was outside working on it.
Then I left to go have a fun girls night out, and when I got home...both cars were parked inside the garage.
And the lawn was mowed the kids had been fed dinner, showered and all 3 in bed asleep. :)
When I think of Larry, and I make reference to him. I just can't think of a better word than friend. I hope I'm half the friend to him as he is to me!
I ran into my friend Sue at the football game. She came over to see how things were going, and she asked "Who is your friend Larry that is going with you?" She was confused because she thought if it were my husband Larry, I would have called him my husband. Makes sense! Well, here's my reasoning:
Larry has been my husband for a little over 17 years. And he's earned that title.
But Larry has been my friend, my very bestest friend for the last 22 years. So the friendship title came first.
He's the kind of friend that works hard all day, and then comes home and sees that I'm tired and immediately starts cleaning or making dinner. He'll go out and pick all the fresh vegetables out of my garden (that he planted) and bring them in for me...even though he doesn't eat ANY of it.
He goes with me to every single doctors appt, scan, surgery, procedure. He holds my hand (when he's allowed to come in) even though one time ( years and years ago, like in 1994) he went to the ER with me because I had leg aches << very funny story>>, anyway when they talked about taking a blood sample, I looked and my friend Larry had passed out. :)
He encourages me to be brave. He takes over all parenting when I don't feel up to it. He's an amazing father to our 3 kids, and they would also consider him a friend.
Sometimes, at night, I will watch him from the family room as he cleans up the dishes from dinner. I think how he's been at work today, from 6:30am - 5pm and this should be his time to rest. But he's always so willing to step up and get things done when I'm not able to. Not only does he NOT complain one single time, but he'll then look over at me and say "Can I get you a drink? Do you want some water with orange slices in it, like you like?"
Yesterday I mentioned how nice it would be if we could fit both vehicles in the garage. My car was in, but on his side there was all our "summer" play toys, bikes, remote control cars, there was scrapbooking stuff, food storage, etc. Before I knew it, he was outside working on it.
Then I left to go have a fun girls night out, and when I got home...both cars were parked inside the garage.
And the lawn was mowed the kids had been fed dinner, showered and all 3 in bed asleep. :)
When I think of Larry, and I make reference to him. I just can't think of a better word than friend. I hope I'm half the friend to him as he is to me!
Saturday, October 9, 2010
Confusingly Clear
Dr. V called me today with the results of my MRI. Honestly, I'm not really clear on what the results were because she said it was good news, so I think there were things they were wondering about that turned out to not be an issue on the MRI. But she also said that the are some cancer cells at the base of my skull on the right side. And there was also some enlarged lymph nodes on the left side that could be causing the pain I was explaining to her.
Here's sort of the gist of what's going on:
1.Low grade Non-Hodgkin's lymphoma (which I have) would not typically spread to the bone. Although it's not impossible for it to do that. In this case I do have some cancer that has spread to the bone in my shoulder.
2. Low grade Non-Hodgkin's lymphoma can transform to an aggressive form of cancer at any time. If it did transform there would be specific symptoms of that, ie: fever, night sweats, loss of appetite. I have none of those symptoms, in fact I feel pretty good aside from the pains I've had in my neck / shoulder.
3. In any type of cancer your LDH level in your blood is elevated. LDH is a protein that normally appears in the body in small amounts. When you have an aggressive cancer the LDH level is quite high. My LDH level is in a normal range.
So, (that was probably super confusing - but I'm journaling this for myself as well) Dr. V thinks that even though the cancer has spread to some bone, she thinks I still have a low grade lymphoma. But just to be sure there has been no change / transformation she is having a surgery schedule to remove part of one of my lymph nodes so that pathology can confirm that. When we get the results back from that surgery she will know exactly what kind of chemotherapy will best treat the cancer.
This is what I have coming up this week:
Monday I will have a spinal tap where fluid will be removed to check for cancer cells. Then some type of chemo med's will be put back into my spine to kill any cancer cells. She said this was more of a precautionary thing.
And then I will call to schedule the lymph node surgery for one day next week.
I may possibly start chemotherapy next week as well. Dr. V said she will add some radiation for the cancer that has spread to my bone.
GOOD THOUGHT:
Even though I'm sure all that sounds kind of bad, I am so thankful if it was in the cards for me to get cancer, that I got the kind of cancer I have. There are so many cancers and other diseases that could be much, much worse. I am planning on getting through the next few months with treatment so I can have a
"HAPPY NEW YEAR". A fresh start to a new year. If going through treatments gets rid of the cancer I have, it may just buy me enough years and someone will come up with a cure.
I'm thankful for every day
Yesterday was a busy day. I had some errands to get caught up. So Hope and I were out getting things done. My plan was to have an easy going evening with the family. As I was at the gas station getting ready to get gas my cell phone rang. I almost didn't answer it, but it said "Unknown Number". That is either my mom or something medical. I answered it and it was Dr. V calling. Here's what she said.
"Sorry for the late notice, but I called Dr. Fan and we went over your PET scan results. We're seeing some things that are concerning us and we want to take a closer look. It looks like some cancer may have spread to your bone in your shoulder (where I've been having pain), and also there may be some cancer cells in your sinus cavity / base of your skull. We don't like seeing cancer that close to your brain, so I need you to come down right away for an MRI.
We will also want to schedule another surgery to have a lymph node removed so we can see if the cancer is transforming (even thought my cancer is indolent / slow growing it can change to a more aggressive cancer at any time) , and then we will also want to schedule a spinal tap next week."
This is hard to hear, as you can imagine. So, I thought, "OK, I'll deal with this" and I thought I was OK. But I noticed as I pumped the gas my hand would not quit shaking. Next I called some friends and arranged for my kids to be taken care of (HUGE thanks for Alissa, Chrissy and Sue).
Larry came home and picked me up for the MRI. I asked him for a blessing. Every time I have a blessing I always feel a little calmer, and I was able to stop shaking.
We went to the hospital and they got me set up for my MRI. I was really nervous about it since I know an MRI is where you go ALL THE WAY inside a tube. And then test is 1 hour long. And remember how I got claustrophobic in the PET scan which was a lot bigger opening, and I didn't stay in the tube the whole time?? Well, I lucked out because I had a very understanding nurse. She gave me some med's that made me a little calmer / sleepy. And then they put numbing medicine on my port so they could use it for contrast instead of giving me and IV.
I then went in and laid on the table for the MRI. The nurse put head phones on and asked if there were CD's or any type of music I would like to listen to. I told her to put in on 104.3 with the Gal Pals (thanks so much for the beautiful flowers Chelsi, Annie & Roxi). Then she put a cover over my eyes and left the room.
At that point I started to go back into the tunnel. I started to panic as I felt the tube rub against my shoulders and I could tell how small a space it was going to be. I didn't want to look though because I knew I would freak out. So I just laid there with my eyes covered listened to Annie & Roxi. It was nice to have some familiar voices to listen to.
The test is really loud (it sort of sounds like jack hammers) and there's a lot of shaking. But I just made myself not think about it and just keep listening to the head phones.
Some time after I'd been in there, the nurse brought me out and had a radiology nurse come in to put contrast in through my port. Even though I had the numbing cream on, I'm not going to lie, it still hurts. It's a little bigger needle than an IV needle, and it still has to go through my skin to get into the port. (The port is not there so it doesn't hurt to get poked, it's there to save your veins from all the stuff that get puts into you).
It wasn't horrible pain though. I'm very glad I have the port (and I'm glad it's a purple heart:)
So then, I went back in to the tunnel for a little while. The nurse could talk to me through the headphones and every once in a while she'd say "your doing great". Finally she said, OK, we're all done. So at that point before she pulled me out, I decided to look and see without my eyes covered. The tunnel was almost a couple of inches from each of my shoulders, and about 6 inches from my face. I'm so glad I did not know that! When I came out, the nurse said I had been in there for TWO HOURS.
I had called the nurse at Dr. V's office and asked if I would have to wait until Monday for the results, and she said no. But I didn't hear from anyone last night (although it was after 6 by the time I was done). I will give them a few hours this morning, and then I'm calling the doctor on call.
When I got home, I found all my kids to be taken care of and fed dinner . Lauren was taken to every place she needed to go. Then dinner was brought over for Larry and I. I always knew I had wonderful friends, but I will never, never, never be able to tell them how much it means to me that they're are there for me right now. I wish I could.
It breaks my heart to have to call my family and friends out of state with news like this. I know they want so badly to be here with me right now. They are a HUGE support to me, and just talking to them makes me feel better. I've got a wonderful family!
GOOD THOUGHT FOR TODAY:
It's 7 am I'm sitting in my office looking out the window. The sky to the east is bright orange as the sun is making it's way up. The sun is coming up. It's another day. I'm thankful for every day. I'm going through one of those things you think "that would never happen to me, it always happen to someone else". But the truth is, it does happen to me, and it does happen to someone else. Maybe not this exact thing, but we all go through something. I know through our trials we gain strength and personal insight. We have to brought to our lowest, so we may be brought to our highest. We gain so much more too. If I had to list all the things I've gained from this experience, it would take 2 more pages.
You know I admire my friend Diane so much and she recently told me in the scriptures it never does say
"and it came to stay".
I lean so much on my Heavenly Father. I've explained to Him that I will do what I have to do. I will have the tests, the treatment, whatever I need to do. But I have a lot still to get done around here (and I don't just mean laundry). I know He hears my prayers, and He hears all of yours on my behalf. And I sincerely thank you all from the bottom on my heart. (my real one, not my purple one) :)
"Sorry for the late notice, but I called Dr. Fan and we went over your PET scan results. We're seeing some things that are concerning us and we want to take a closer look. It looks like some cancer may have spread to your bone in your shoulder (where I've been having pain), and also there may be some cancer cells in your sinus cavity / base of your skull. We don't like seeing cancer that close to your brain, so I need you to come down right away for an MRI.
We will also want to schedule another surgery to have a lymph node removed so we can see if the cancer is transforming (even thought my cancer is indolent / slow growing it can change to a more aggressive cancer at any time) , and then we will also want to schedule a spinal tap next week."
This is hard to hear, as you can imagine. So, I thought, "OK, I'll deal with this" and I thought I was OK. But I noticed as I pumped the gas my hand would not quit shaking. Next I called some friends and arranged for my kids to be taken care of (HUGE thanks for Alissa, Chrissy and Sue).
Larry came home and picked me up for the MRI. I asked him for a blessing. Every time I have a blessing I always feel a little calmer, and I was able to stop shaking.
We went to the hospital and they got me set up for my MRI. I was really nervous about it since I know an MRI is where you go ALL THE WAY inside a tube. And then test is 1 hour long. And remember how I got claustrophobic in the PET scan which was a lot bigger opening, and I didn't stay in the tube the whole time?? Well, I lucked out because I had a very understanding nurse. She gave me some med's that made me a little calmer / sleepy. And then they put numbing medicine on my port so they could use it for contrast instead of giving me and IV.
I then went in and laid on the table for the MRI. The nurse put head phones on and asked if there were CD's or any type of music I would like to listen to. I told her to put in on 104.3 with the Gal Pals (thanks so much for the beautiful flowers Chelsi, Annie & Roxi). Then she put a cover over my eyes and left the room.
At that point I started to go back into the tunnel. I started to panic as I felt the tube rub against my shoulders and I could tell how small a space it was going to be. I didn't want to look though because I knew I would freak out. So I just laid there with my eyes covered listened to Annie & Roxi. It was nice to have some familiar voices to listen to.
The test is really loud (it sort of sounds like jack hammers) and there's a lot of shaking. But I just made myself not think about it and just keep listening to the head phones.
Some time after I'd been in there, the nurse brought me out and had a radiology nurse come in to put contrast in through my port. Even though I had the numbing cream on, I'm not going to lie, it still hurts. It's a little bigger needle than an IV needle, and it still has to go through my skin to get into the port. (The port is not there so it doesn't hurt to get poked, it's there to save your veins from all the stuff that get puts into you).
It wasn't horrible pain though. I'm very glad I have the port (and I'm glad it's a purple heart:)
So then, I went back in to the tunnel for a little while. The nurse could talk to me through the headphones and every once in a while she'd say "your doing great". Finally she said, OK, we're all done. So at that point before she pulled me out, I decided to look and see without my eyes covered. The tunnel was almost a couple of inches from each of my shoulders, and about 6 inches from my face. I'm so glad I did not know that! When I came out, the nurse said I had been in there for TWO HOURS.
I had called the nurse at Dr. V's office and asked if I would have to wait until Monday for the results, and she said no. But I didn't hear from anyone last night (although it was after 6 by the time I was done). I will give them a few hours this morning, and then I'm calling the doctor on call.
When I got home, I found all my kids to be taken care of and fed dinner . Lauren was taken to every place she needed to go. Then dinner was brought over for Larry and I. I always knew I had wonderful friends, but I will never, never, never be able to tell them how much it means to me that they're are there for me right now. I wish I could.
It breaks my heart to have to call my family and friends out of state with news like this. I know they want so badly to be here with me right now. They are a HUGE support to me, and just talking to them makes me feel better. I've got a wonderful family!
GOOD THOUGHT FOR TODAY:
It's 7 am I'm sitting in my office looking out the window. The sky to the east is bright orange as the sun is making it's way up. The sun is coming up. It's another day. I'm thankful for every day. I'm going through one of those things you think "that would never happen to me, it always happen to someone else". But the truth is, it does happen to me, and it does happen to someone else. Maybe not this exact thing, but we all go through something. I know through our trials we gain strength and personal insight. We have to brought to our lowest, so we may be brought to our highest. We gain so much more too. If I had to list all the things I've gained from this experience, it would take 2 more pages.
You know I admire my friend Diane so much and she recently told me in the scriptures it never does say
"and it came to stay".
I lean so much on my Heavenly Father. I've explained to Him that I will do what I have to do. I will have the tests, the treatment, whatever I need to do. But I have a lot still to get done around here (and I don't just mean laundry). I know He hears my prayers, and He hears all of yours on my behalf. And I sincerely thank you all from the bottom on my heart. (my real one, not my purple one) :)
Thursday, October 7, 2010
I could laugh at this, but only a little later
Well, today was my PET scan. It was scheduled for 1:30pm. I could not eat after 9:30am. But luckily I could drink water. I like to put orange slices in my water (for a little flavor, plus it's cute) and they said that would be OK. So at 1:00 Larry came home to pick me up. When I got to the medical pavilion I was taken back for my IV (remember, they can't use the port). The nurse that gave me IV was a radiology nurse so she was able to check my port, and said everything was healing just fine. Look at me go!
Then she gave me a 16oz drink. It was warm and thick and white. She said it tasted like a strong pina colada. I took a sip, and let me just say, I don't know where she's getting her pina colada's but wherever that is, they're making them wrong!! It tasted like thick warm yuck. I had to apologize to her for the face I was making at her every time I took a sip.
I just kept on taking big gulps (and making weird faces) hoping the drink would be gone soon. Oh, did I mention she said the drink was barium. Doesn't that just sound lovely?? Larry (my friend I like to take with me for support / comedy relief) said they should change the name of that drink to make it more appealing...it's all about the marketing. So we came up with the name "berry-yumyum". I tried to think of that name while I was drinking, but I still made the face!
So then they took me back (my friend Larry could not come with me) to a quiet dark room. A radiology tech came in and said he was going to put something in my IV and then I had to sit completely still for 1 hour before my scan. I could not read or talk on the phone or even think really...just sit still!
Then (my favorite part) he pulled out a silver tube with a huge needle coming out of it. When I asked him why it was in a metal container he said "oh, we don't want to touch what it's there". Oh, then please do go ahead and inject that into my veins! :) And he did.
I sat in the recliner for about 3 minutes before I went to sleep. When he woke me up 57 minutes later he handed me ANOTHER cup of "berry-yumyum". He said to drink it and then come over to the scan room. So I took one drink, walked right into the bathroom and flushed the rest of it down the toilet. Goodbye Berry-yuckyuck!
Next, I was put on the scan table and he asked me to put my hands above my head. He put straps on to hold my arms in place and to hold me onto the table. Then the scan started. He told me it would take about 25 minutes. The scan was a little different than a CAT scan because when I started to go into the machine, it was more like a large tunnel. For a second I got a little claustrophobic. I closed my eyes and tried to find a happy place (which happened to be Maui, drinking a REAL pina colada, virgin style). Luckily I started moving again and came out the other side and I could breathe again. Of course at one point my nose started to itch, doesn't that always just happen when your arms are strapped above your head??
So then, the scan was done. And I will get the results on Monday at Dr, V's office. She said the PET scan would show if any cancer cells were spreading to other parts of my body / organs. She expected them to have not.
Then, we came home and Larry picked up Lauren to take her to cheer, and then he headed back to work.
****************************HERE'S WHERE IT GETS GOOD************************
(if you have a weak stomach....do not read ahead, Just end here. Have a great day!)
So as soon as Larry pulls out of the driveway I feel like I have to go to the bathroom. Like go RIGHT NOW! So I run into the bathroom and I go. Well, I was not warned that this would occur. Nor was I warned that it would be bright green. I'm talking fluorescent green. Light up the room green. Gross right? Well, then I started getting nauseous. I think it's the "berry-yuckyuck" wanting to come back up. It must be scared of the radio-active stuff that's now down there with it. Anyway, all the sudden I think "I wonder where Hope is?" I open the garage door just in time to see a friend of mine from church walking up the driveway with her 3 little girls. She was just stopping by to check in with me and see how I was doing. I thought to myself "Oh, I'm just pooping florescent green...how are you??". I spared her the details (do you wish you were that lucky), anyway, she headed out and I came back inside. Still wondering where Hope is I come upstairs and found her in Lauren's bathroom using a razor shaving Lauren's deodorant. Seriously?? I now know I'm no longer up for parent of the year. I clean up that mess, just as I start to hear a really loud noise outside. I looked out, and it was raining and hailing. For some reason, my car was not pulled in the garage, and I know hail can cause all sorts of damage, so I run downstairs and throw on some flip flops and head out to the garage. The garage door was up so the floor was a little wet. Have you seen what happens when cheap plastic shoes come in contact with wet / icy garage floors?? Anyway, I went down. I seriously thought to myself "Of course I just fell. What a way to end my night".
Then I got Josh and Hope in the car to go and watch Lauren cheer at football and on the way my mom called. I answered my cell phone, but I could not talk through all my sobbing. Because I just think, why did I have to have that stupid scan and drink that gross stuff and then be injected with that radio active stuff and then be woke up to drink more of that stuff to come home and poop the greenest stuff you've ever seen and then clean up the biggest mess ever and then FALL DOWN??? WHY????
My poor mom called at just the right time (sorry mom). I'm OK now. Actually, I can laugh at this all now that it's a little later!
ps My pee is bright, fluorescent yellow. :) Must have been good stuff in that metal tube!
GOOD THOUGHT FOR THE DAY:
It's bedtime! G'nite!
Then she gave me a 16oz drink. It was warm and thick and white. She said it tasted like a strong pina colada. I took a sip, and let me just say, I don't know where she's getting her pina colada's but wherever that is, they're making them wrong!! It tasted like thick warm yuck. I had to apologize to her for the face I was making at her every time I took a sip.
I just kept on taking big gulps (and making weird faces) hoping the drink would be gone soon. Oh, did I mention she said the drink was barium. Doesn't that just sound lovely?? Larry (my friend I like to take with me for support / comedy relief) said they should change the name of that drink to make it more appealing...it's all about the marketing. So we came up with the name "berry-yumyum". I tried to think of that name while I was drinking, but I still made the face!
So then they took me back (my friend Larry could not come with me) to a quiet dark room. A radiology tech came in and said he was going to put something in my IV and then I had to sit completely still for 1 hour before my scan. I could not read or talk on the phone or even think really...just sit still!
Then (my favorite part) he pulled out a silver tube with a huge needle coming out of it. When I asked him why it was in a metal container he said "oh, we don't want to touch what it's there". Oh, then please do go ahead and inject that into my veins! :) And he did.
I sat in the recliner for about 3 minutes before I went to sleep. When he woke me up 57 minutes later he handed me ANOTHER cup of "berry-yumyum". He said to drink it and then come over to the scan room. So I took one drink, walked right into the bathroom and flushed the rest of it down the toilet. Goodbye Berry-yuckyuck!
Next, I was put on the scan table and he asked me to put my hands above my head. He put straps on to hold my arms in place and to hold me onto the table. Then the scan started. He told me it would take about 25 minutes. The scan was a little different than a CAT scan because when I started to go into the machine, it was more like a large tunnel. For a second I got a little claustrophobic. I closed my eyes and tried to find a happy place (which happened to be Maui, drinking a REAL pina colada, virgin style). Luckily I started moving again and came out the other side and I could breathe again. Of course at one point my nose started to itch, doesn't that always just happen when your arms are strapped above your head??
So then, the scan was done. And I will get the results on Monday at Dr, V's office. She said the PET scan would show if any cancer cells were spreading to other parts of my body / organs. She expected them to have not.
Then, we came home and Larry picked up Lauren to take her to cheer, and then he headed back to work.
****************************HERE'S WHERE IT GETS GOOD************************
(if you have a weak stomach....do not read ahead, Just end here. Have a great day!)
So as soon as Larry pulls out of the driveway I feel like I have to go to the bathroom. Like go RIGHT NOW! So I run into the bathroom and I go. Well, I was not warned that this would occur. Nor was I warned that it would be bright green. I'm talking fluorescent green. Light up the room green. Gross right? Well, then I started getting nauseous. I think it's the "berry-yuckyuck" wanting to come back up. It must be scared of the radio-active stuff that's now down there with it. Anyway, all the sudden I think "I wonder where Hope is?" I open the garage door just in time to see a friend of mine from church walking up the driveway with her 3 little girls. She was just stopping by to check in with me and see how I was doing. I thought to myself "Oh, I'm just pooping florescent green...how are you??". I spared her the details (do you wish you were that lucky), anyway, she headed out and I came back inside. Still wondering where Hope is I come upstairs and found her in Lauren's bathroom using a razor shaving Lauren's deodorant. Seriously?? I now know I'm no longer up for parent of the year. I clean up that mess, just as I start to hear a really loud noise outside. I looked out, and it was raining and hailing. For some reason, my car was not pulled in the garage, and I know hail can cause all sorts of damage, so I run downstairs and throw on some flip flops and head out to the garage. The garage door was up so the floor was a little wet. Have you seen what happens when cheap plastic shoes come in contact with wet / icy garage floors?? Anyway, I went down. I seriously thought to myself "Of course I just fell. What a way to end my night".
Then I got Josh and Hope in the car to go and watch Lauren cheer at football and on the way my mom called. I answered my cell phone, but I could not talk through all my sobbing. Because I just think, why did I have to have that stupid scan and drink that gross stuff and then be injected with that radio active stuff and then be woke up to drink more of that stuff to come home and poop the greenest stuff you've ever seen and then clean up the biggest mess ever and then FALL DOWN??? WHY????
My poor mom called at just the right time (sorry mom). I'm OK now. Actually, I can laugh at this all now that it's a little later!
ps My pee is bright, fluorescent yellow. :) Must have been good stuff in that metal tube!
GOOD THOUGHT FOR THE DAY:
It's bedtime! G'nite!
Tuesday, October 5, 2010
Being brave does not mean you're not scared!
A week ago when I had my appt with Dr. V, she mentioned that my whole family would need a flu shot right away (including me). She said that once I start chemotherapy I need to be very careful about being around anyone sick. The flu shot would help eliminate some of that sickness in the future.
As soon as she said that I thought of my kids. To say they are terrified of shots would be an understatement. But Larry and I sat them down and told them we would be having a "family shot day". The reaction was not exactly jumping up and down with glee. But when he explained that it was for mom, so I would not get sick in the future, they were immediately on board. They put their bravest faces on and said they would do it, no problem.
Well, tonight was the night. We all piled in the car and headed to Dr. Gao's (my family practice dr) office. First Larry and Lauren and Josh went in together. I stayed out with Hope because we didn't want her to see the "fun" that would be coming soon. Sitting out in the waiting room I heard Josh start to cry a little. I felt bad because I knew he was scared. But then, I heard with start to laugh / cry with relief because it was over.
When they came out, I went back for my shot. Lauren and Josh came back with me for support. Then it was Hope's turn. Larry brought her in and I told her she would feel a little pinch in her leg (I hate those big surprises, I would rather know it's coming). She, of course, screamed and was super ticked as she got poked. As soon as it was over I said to her, let's go to the ice-cream shop and get an ice-cream cone. And that's all it took. Tears were over, and she was excitedly telling her brother and sister the good news.
We took them over to Enstrom's and got an ice-cream cone. As we ate, Josh said he felt bad that he was not brave. Larry quickly explained to him that being brave does not mean your not scared. Being brave is when you're scared, but you do it anyways.
I know I don't feel real brave right now. Especially knowing (or not knowing) what's in my near future. I was scared to death of the port surgery, but I did it. I don't know that I felt brave after, as much as pure relief it was over. I can't wait to feel that relief in a few months when Dr. V tells me my cancer has shrunk.
I'm truly thankful for the sweet comments, and for all the love and support. I think having all the thoughts and prayers..that's what makes me feel brave! Thank you! ♥ ♥ ♥
Monday, October 4, 2010
Today I got a "Purple Heart"
This morning I woke at 5am. I tossed and turned and could not go back to sleep. I think subconsciously I'm very concerned for the upcoming procedures / treatments. I guess I am consciously nervous about them as well. I was not looking forward to my alarm going off at 7am when I would get up and go the hospital for port implantation surgery. I'm always very nervous about things that I have to stay awake for, like this surgery.
Larry and I got to the hospital at 8am and checked in for the appt. My radiology nurse came in to give me an IV. This is something I am very used to; I've had several IV's before. She found a spot on my wrist where she wanted to give me the IV. It was on the top of my wrist, right where it bends. She got it on the first try, but for some reason the IV was very painful after. I was hoping this was not indicative of how the rest of the procedure was going to go.
The next thing she did was bring me the actual port to show me what it looked like before they put it in. And then the most WONDERFUL thing happened. The port was small, and purple, and in the shape of a heart. OMGSH. What could be cuter? All the sudden I was not so scared to have that put in me for the next few months. It's super cute. :)
See???? I know....now you're jealous right? :)
Anyway, here's how the procedure went........
They took me back to surgery. It was a sterile surgical room with about 5 or 6 people getting ready for me. I moved over to the surgery table and they started the "prep". They sterilized the area where the port was going to be placed (on my right side from my neck down to just below my collar bone). They draped the area and had me look the opposite way, so I couldn't see anything they were doing. I was able to look at my nurse and tell her if I was in any pain. Just as they started the procedure my nurse gave me some type of "meds" in my IV. I could tell they were working because when I looked at the ceiling it started moving. I think they used Versed and Phentanol. I got really sleepy, but was not 100% asleep. The doctor came in and told me he was ready to start and I would feel a little pain at first as they numbed the area with lidocaine. I felt about 4-5 shots, you know little pinches. But then I drifted out for a bit. When I woke up I felt a lot of pushing and tugging as they were placing the port. Then...it was over. Seriously, not as painful as I anticipated and....I ended up with a cute port!
I have 2 incisions. The larger one is just below my collar bone, and a smaller one a little higher on my neck. No biggie.
The incisions will heal, and the port is placed completely under my skin. It looks like a little bump. You won't get to see the purple, and the only time it will look like a heart is in an x-ray. But the fact that I know it's a purple heart made me happy!
Today, I've been sore. It's been hard to move too quickly or turn my head. I'm sure that will wear off within the next couple of days.
Thursday is my PET scan. They won't be able to use my port for that because they use a high amount of sugar ( cancer likes sweets, go figure) and it could make the port sticky.
GOOD THOUGHT FOR TODAY:
I had read that once you have a port in you can't lift anything over 15 lbs. Well, I have an "almost 3" year old that weighs about 30 lbs. I was sad I could not lift her. Well, today I asked my doctor if that was the case and he said NO!!!! I can lift my girl, not problem! YAY!!! Great news!
Larry and I got to the hospital at 8am and checked in for the appt. My radiology nurse came in to give me an IV. This is something I am very used to; I've had several IV's before. She found a spot on my wrist where she wanted to give me the IV. It was on the top of my wrist, right where it bends. She got it on the first try, but for some reason the IV was very painful after. I was hoping this was not indicative of how the rest of the procedure was going to go.
The next thing she did was bring me the actual port to show me what it looked like before they put it in. And then the most WONDERFUL thing happened. The port was small, and purple, and in the shape of a heart. OMGSH. What could be cuter? All the sudden I was not so scared to have that put in me for the next few months. It's super cute. :)
See???? I know....now you're jealous right? :)
Anyway, here's how the procedure went........
They took me back to surgery. It was a sterile surgical room with about 5 or 6 people getting ready for me. I moved over to the surgery table and they started the "prep". They sterilized the area where the port was going to be placed (on my right side from my neck down to just below my collar bone). They draped the area and had me look the opposite way, so I couldn't see anything they were doing. I was able to look at my nurse and tell her if I was in any pain. Just as they started the procedure my nurse gave me some type of "meds" in my IV. I could tell they were working because when I looked at the ceiling it started moving. I think they used Versed and Phentanol. I got really sleepy, but was not 100% asleep. The doctor came in and told me he was ready to start and I would feel a little pain at first as they numbed the area with lidocaine. I felt about 4-5 shots, you know little pinches. But then I drifted out for a bit. When I woke up I felt a lot of pushing and tugging as they were placing the port. Then...it was over. Seriously, not as painful as I anticipated and....I ended up with a cute port!
I have 2 incisions. The larger one is just below my collar bone, and a smaller one a little higher on my neck. No biggie.
The incisions will heal, and the port is placed completely under my skin. It looks like a little bump. You won't get to see the purple, and the only time it will look like a heart is in an x-ray. But the fact that I know it's a purple heart made me happy!
Today, I've been sore. It's been hard to move too quickly or turn my head. I'm sure that will wear off within the next couple of days.
Thursday is my PET scan. They won't be able to use my port for that because they use a high amount of sugar ( cancer likes sweets, go figure) and it could make the port sticky.
GOOD THOUGHT FOR TODAY:
I had read that once you have a port in you can't lift anything over 15 lbs. Well, I have an "almost 3" year old that weighs about 30 lbs. I was sad I could not lift her. Well, today I asked my doctor if that was the case and he said NO!!!! I can lift my girl, not problem! YAY!!! Great news!
Friday, October 1, 2010
Yep...I'm a planner!
Yesterday I had a message from Dr. V's (my Colorado oncologist) office saying that Dr. Fan (my Stanford doctor) had called and canceled my CAT scan today. They said she thought a PET scan would be better to do and give them more info. So I'm still on for the port surgery Monday morning, and then I will schedule the PET scan sometime next week.
My positive thought for today:
Everyone gets sick. Everyone gets the flu or a bad cold that keeps that down for a little while. They don't get to choose when that will be, it just happens.
Well.........I get to plan when I'm going to be sick. And anyone who knows me knows how I like to plan things :) I get to get my house cleaned, laundry caught up, bills all paid, groceries bought. And then I can be down for a little bit! Yep, I'm a planner. :)
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