Soundtrack of Your Life

Quote of the Day:  For better or for worse, music is the language of memory.  It is also the language of love. - Jodi Picoult, in her novel Sing You Home

Sonja Hinderlie playing her cello in the Mount Carmel Trio

I am not original in posing the question, What is on the soundtrack of your life? But, I found it was a great journaling prompt for my friends and family at Mount Carmel.  I had a longing to connect with other creative spirits, so I announced that I'd like to get together with others who are interested in journaling.  I used my own prompt from my recent post, What songs hold a strong memory in your life?

A couple other moms and I met on Tuesday.  We talked about songs that we sang as kids, and ones that we sing to our kids.  One mom said that her kids love it when she sings Rock-a-by baby in the treetops, when the wind blows the cradle will rock. When the bow breaks, the cradle will fall, and down will come baby, cradle and all.  And, it's a lovely little tune and you sing about a baby and rocking, but then you're singing about the cradle falling and breaking, and when you think about it, it's not such a nice song afterall.  So, this mom, tried other words, which didn't really go over, so she wrote out a different image of the cradle falling into the loving arms of Jesus, and a prayer that the baby would be protected from the storms and falls of life.  A much nicer vision as you send your children off to dreamland.

On Wednesday, I tried meeting with a few more people right after lunch.  My mom was the first one there, and we were quickly joined by two of my cousins, a cousin-in-law, and another woman (the only non-Aalgaard).  We started by writing out songs and memories associated with songs.  My mom wrote a list of songs she likes to sing or hum to herself, morning praise songs, hymns, then started to write about songs that reminded her of her grandma and her parents.  We got a little family history out of it - for instance, our grandparents (on my dad's side) came into their faith by attending tent rival-type meetings back in the 30's.

My mom wondered what songs I'd think of when I thought of her.  Hymns, of course, especially Swedish hymns, but that's more her dad.  I told her that I think of her when I hear the soundtrack to Fiddler on the Roof.  She likes the good, old musicals.  The Sound of Music is also a favorite, but what I'll always remember is that my mom prefers the first half of these shows.  "They end too sad," she says.

My dad sings cowboy songs and gospel songs and anything that sticks in his head.  He loves to sing.  And, I realized that it's a family trait to walk around all day with a tune running through your head.  I hear my boys doing it, too. Ah, Tradition! like in Fiddler on the Roof, or the way we all confessed to stopping for ice cream on our way to camp.

Go. Create. Inspire! And, keep a tune in your heart.

Journaling Prompt:  What is on the soundtrack of your life?

Update for doc #1

Mom and dad met with the oncologist yesterday. Not a lot of info was gleaned from the conversation. We found out there were several lymph nodes enlarged (15-30%). None of them are on vital tissue, organs or any other place. Which makes it easier if mom chooses surgery to remove them.

Mom now has decided NOT to do the IP. I talked to dad briefly, and not mom, so I don't know what happened there...if the doctor didn't think it would be more beneficial, or if the doctor said it was extremely hard on the body. Doesn't matter...she's not doing it.

So now, dad and the doctor are looking at a clinical trial in Denver to make sure the medication mom is currently on won't keep her out of the trial. It looks like we still have to wait until 3 months for the pet scan, and for more time in between the chemo treatments. However, mom and dad will meeting with another doctor on Friday, and we might hear more from her. There are other clinical trials throughout the country, too, that dad is looking at. It all matters what is most beneficial and what could yield the best results. Avastin was brought up, because her oncologist has seen good results from the usage of it.

I talked to mom yesterday before her appointment and she sounds good. I tell you people, prayer works. Her spirits were a LOT higher. She wants to fight, she doesn't want to die. She said she needs to hear positive thinking. I would suggest to NOT have the words, "I'm sorry" come out of your mouth if you talk to her. I know it's easy for it to spill (because you ARE sorry!!) but focus on what's next...and keep her busy. She's going to have a few months to have to sit and wait.

I am most sad that it sounds like mom and dad's Scotland trip has been temporarily put on hold. It's all in the timing. Last chemo, the last two treatments were very hard and took longer to bounce back. If she starts in June, it's getting close to the September mark for her final treatments.

As for me and how I am dealing...need to go to the doctor for anxiety. My stomach is upset all of the time. Just anxious and not feeling all that great. As time goes on, I am hoping it will get easier. I just don't know.

Keep praying!!

It hasn't stopped, the fear

Mom goes in for her CA125 and Pet scan today. Every three months, like clockwork. I really, really try to be optimistic, but know we all will be devastated to hear bad news. She decided to go in today so she could hear results tomorrow and not have to wait the weekend. I also appreciate that. I can't stand the waiting game.

I, along with other cousins, have been coordinating our reunion for this year. It had been mentioned to maybe put it off for another year because it was getting hard to find a place. In the back of my mind, no matter how much I tried not to listen to it, was the thought that we might not HAVE another year. Make the time important! Make it happen!! So, we made it happen and will all be gathering in June.

I don't think of the cancer daily. I can go several days without thinking of it. However, when I hear that a friend's cancer came back, it hits me like a ton of bricks. When I have friends dying, it brings me to tears for so many reasons.

I hate cancer.

Hourglass

Card shopping has become an extremely hard thing to do when I'm buying one for my mom. I feel as if I should go shop for them around midnight so no one is around to see me bawl my eyes out. Every card I looked at made my eyes tear up, and I looked like a ninny. I picked out a card for my mom that essentially said, "what would I do without you" because it's STILL on my mind. What would my life be like without her in it?? She cried while reading it, because she wondered, as I did, if she'd make it to her next birthday. I cried while buying it, because the words rang so true.

No card ever says it all. There are no words to say how thankful I am that I have another year with her. There is no card that says everything that I feel needs to be said. I don't have the words to be able to express how deep my love is for her.

I try not to hear a clock slowly ticking time down, reminding us that our time together could be short. Instead, I try to appreciate each and every moment that we have together. Not as it would be our last, but enjoy it like it's a first. We don't know what God's plan is for mom. She has a 50% chance to survive this cancer five years. If she passes that five year mark, we're in the clear. It's amazing how struggle and pain makes you appreciate life so much more. We have an appointment for a pedicure on Tuesday (mom's first...I'm going all out) and it brings a smile to my face to think about being there as she experiences it. How could she NOT love it?

Today, it was a good day. Happy Birthday, mom.

Results

I received a couple of phone calls from mom this past week but have been waiting to tell the results of her tests until we heard everything.

Mom had her CT Scan and it was clear! She had her CA125 counts come back and they had gone down to 5! This news makes us all breathe a little easier, and allows the cancer to go a little further back into our minds. Remission is such a two-edge sword. You are so happy that she's in remission, but it's not "cured" for 5 whole years. We are so grateful for the news and are trying to train ourselves to be happy with what we've got!

Mom's energy is coming back strong as she does physical therapy. Her leg pain is less, she has feeling in all of her limbs. She's hoping the "chemo brain" gets better in time because she gets very frustrated at the loss of her short term memory. All in all, an EXCELLENT report and we are very happy!

My mom has HAIR!

Saw it with my own eyes. It's beautiful.

Mom update

I was told by several people that I haven't had any updates about mom written here. Well, it's because there's not a lot to update you with. I talked to her last night and she reports, "I still have leg pain, I still have neuropathy in my hands, and I'm still bald".

The leg pain gets bad in the evenings, and she's trying so hard not to use strong, prescribed medicine to get through it. Since she had fibromyalgia before her chemo, she isn't sure if it's that, or the taxol in her system. I'm guessing taxol, but that's only a guess.

As for her hair, I know it takes awhile for it to come back, but I'm really praying that it takes root soon...she's desperate for her hair to be back!

Her next Avastin treatment is the 10th, and she goes in for a womanly check-up today. She can't remember why she goes in for that since there's "nothing there anymore" but we'll find out today.

Her days are pretty good, but she still tries to take it easy since she gets tired so easily. All in all, things are the same.

Waiting time

I was lucky enough to go and visit my parents yesterday for about four hours. Mom is doing pretty good. Even though she doesn't feel great, her spirits are higher. It's because she knows she's done! We talked of eating steaks and salads and hopefully celebrating her "birthday"...which is day one of remission. Mom has her CT Scan on Thursday, and then in two weeks she'll have her CA125 results. If the scan looks good and her numbers went down, they should give us the good news. With the way the numbers have been going, and the fact the treatments seem to be working, dad and I figure her CA125 number should be at 11. It's going to be a long two weeks to hear that number!

We then talked about mom continuing her Avastin trial (if it is, indeed, Avastin) and other options that might be coming up in other trials. Most importantly, we talked about getting her strength up because she is so weak. The prayers seem to be working...mom and dad seem to be getting along well. I thank you so much for all of your thoughts! I promise I will let you know the results as soon as they come in.

Fantastic news

Mom had her CA125 test results come back yesterday, and the number is.....



Wait for it....






14!!
Now, remember...she had the last chemo on Wednesday, so they'll take another test in three weeks to see what her numbers are.

Please pray for mom and dad to be able to do this last one. I will be able to go over to mom and dad's house on Sunday it looks like, so that will give them the break they need. Both are worn out, both are having cabin fever, and both are driving each other crazy. Pray that they might have some time to themselves after this is all done (I mean away from each other...ha ha) and then have the heart grow fonder and all of that. Mom's talking about going to visit her sister in St. Louis, and dad's talking about going to his reunion in August. A nice break for the both of them.

Just one more

I spent the day with mom and dad today. It was nice and relaxing. My uncle is in town and he spent some time teaching me how to make the best lasagna I've ever had. I'm hoping I can remember the recipe, but know he's only a phone call away...

Mom is still recovering after chemo #5. She received her first shot, and will not do it again. Extremely painful, and the idea of doing nine more shots after that is just too much. I understand. After all of the poking and prodding and everything she has gone through, she is ready for it to be over. Who COULD blame her? With this, we're not sure if she'll be able to do the last chemo in three weeks or have to wait longer. Dad is worried that this will change the outcome, but also understands that a person can only take so much.

Mom found out that she is anemic, too, so now not only do we have to worry about her white blood cells, but also her red one's. (Or did I say that backwards?) So...they'll be monitoring that, too. She's been very weak, hardly able to stand without her legs getting wobbly and I just hope that she gets her energy back enough to withstand this last chemo. The idea of one more chemo is enough to bring her to tears. Each chemo is becoming harder and harder. I thank God she only has one left because we use that as a mantra in getting her spirits lifted. "Just one more. just one more..." I know the chemo is working. The numbers show this. I just wish it could be over for her so her body could heal. I love her so much and hate to see her in such pain and her body so weak.

Chemo #5

Today mom and dad received good news from Jenny, one of mom's nurses at the cancer center, and also the lead nurse of her trial. Mom's CA125 is down to 19! This is only after 4 chemo treatments. She just had her fifth chemo yesterday, and has one more to go. We are very positive that the chemo is working...it makes her weeks from hell worth it. Mom sounded great (she kept yelling things out so I could hear her in the background as I was talking to dad) and dad sounds wonderful, too.

They figured out that instead of mom getting the ONE shot right after chemo (you know, the one that left her with migraines?) she'll come back one week after her chemo and take 10 consecutive days of shots instead. It's more of a hassle, but this allows mom to get through her week from hell period and the chances of headaches are a LOT less. Dad was going to call and see if she could receive the shots in Longmont rather than Ft. Collins since the trip is shorter.

Dad said that her being in the teens is awesome and once we get her lower than 15, we can sigh a big sigh of relief. The next step is how to KEEP her numbers down. :)

Do a happy dance! Mom is doing great!

Too much time to think

It's been snowing here. A lot. It's been worse here in CO, but as it snows it gives me too much time to think. I've tried to stay busy with my job and online, doing laundry, keeping the boys busy...but things still creep in.

I watched Grey's Anatomy last night and the week before. The storyline is one of the main charachter has Stage 4 cancer (I still can't figure out what they are calling it...melanoma?) It's in the brain and throughout her body. The obvious futility of the situation is mind boggling and I can hardly get through the show without tearing up or sobbing, sometimes both.

This week has been hard for my mother. The shot they gave her to keep her white cells active gave her a migraine for four days. The only thing that would even touch the pain was a whole Percocet, and then that can make her dizzy and sick to her stomach. I went over there on Sunday and I offered her my touch, my love, words of encouragement. They never are enough.

As of yesterday, she was feeling better, which is good. I can't stand that the chemo has put her life on hold, yet understand that it needs to be done. I was thinking of Mother's Day coming up...and felt a sense of loss knowing that she and I most likely won't get together like we've done every year to pick out our annuals for potting up our containers because she doesn't have the energy to be able to do it. I was thinking about my birthday and my son's birthday...and not sure if she'll be able to celebrate it with us.

I'm being selfish. I want her full of life, with energy, feeling good...and I can't have that.

I just want her back.

Wishing

I wish...

I could roll back time and never had it happen.

I could take all of your pain, squish it into a ball, and we burn it...slowly.

I could make everything better

I could spend more time with you

it was over before it began

it will never come back

you felt better about what you look like

you felt better. Period.

he understood your needs more

that you were well

that you would never leave me

that you truly knew how much I love you

Great news!!

Mom got the results of her CA125, and her numbers have dropped to 28. The chemo is working. All we can do is pray she goes into remission after all of this is over with, and it looks like she is heading in the right direction!! She still has two more chemo treatments to go, so keep praying for her!

I am so relieved and excited at once.

I can move again...

I worked Thursday, Friday and Saturday of last week. It's taken me awhile to be able to move again. I laugh about it, but am pretty annoyed that I am so out of shape. I've got to remember to do things during the winter time so my entire body doesn't hurt the first few months back at Picadilly.

I still love working there. I go around the perennials and make sure each and everyone of them is coming back from dormancy. Some of them don't, and I feel so sad when I have to dump them out into the compost pile. Davey's been ordering some more things, and we've been having deliveries the past several days. There's an excitement...we're almost ready!!

I wasn't scheduled to come in on Saturday, but we decided it was probably a good idea for me to come in, and it WAS. We were slammed. I didn't even look at my watch until a quarter til 3:00!!

On Saturday night, we went out with my boss, his wife, a coworker and some of her friends to the Impulse Theater. It's a fun place to go. Improv comedy at it's finest. Well...not quite FINEST, but very entertaining. On Sunday, the entire fam went over to our friend Stacey's house for dinner. She cooked Thai food and it was yummy!

We've had incredible weather outside so I've been pruning and cleaning and digging and dividing. Maybe this is why I'm still sore?? Today I spent most of the day inside working on my other job. My eyes kept looking outside...staring wistfully. I can't help it, I have extreme Spring Fever.

Mom had her chemo today and it sounded like it went well. I called her around 11:00 and found out that dad dropped her off because he thinks he's getting a cold. I really wish they would have called me, I would have stayed with her, but she ended up sleeping for a lot of the day anyway, so I guess it worked out okay. Mom goes back to the center for the shot for her white cell count boost tomorrow. Then I'll go over there on Sunday to be with her while dad is gone. Only TWO more to go!!!

Chemo 4?

This week has been a rough one. Mom had her CT scan on Monday and I've been jittery and impatient to get the results. I don't talk a lot about the fear because it's always hard to express. Mom called me yesterday to make sure I wasn't going to her chemo because her white blood counts were low and they weren't going to give it to her this week. I was concerned for how she would take this news, but she is fine with it "another week where I can eat what I want". Ha ha. We also received the results of her CT scan. There is still a bit of fluid on the bottom part outside of her lung. We're guessing when they drained her, it didn't get it all out. As far as we know, it hasn't effected her breathing, and the doctor will continue to monitor it throughout the chemo. Mom also had a lymph node that was smaller...something else to keep tabs on. When I heard "lymph node" my breath started to come in and out fast. I know that when it hits the lymph nodes it can be very bad, but dad assured me it was a good CT scan. The doctors have decided to give mom a shot after her chemo to help her white cells work faster at reproducing. With this could come more leg pain, and that makes everyone wary, but she has to have the chemo...

We've decided that instead of me going to her chemo rounds, I would come over on Sunday's after chemo and spend time with her. This would allow my dad to go to church and Sunday School, and for mom to be taken care of. Sunday is one of the worst days for mom. Heavy medications and lot of leg pain. Again, the need to help is overwhelming, and I am glad to offer anything to make things better.

I'll be working at Picadilly today and tomorrow. Potting a whole bunch of perennials and maybe even vegetables. It's long, laborous work, but my hands are immersed in the soil so I am happy. A good distraction from the long week.

3rd round chemo

Today I spent the day at the Front Range Cancer Center hanging with mom, Aunt Marsha and dad for 6 hours. We're half way done. Only 3 more to go of the heavy chemo, and then 16 more Avastin treatments (if she's getting Avastin...we're still not sure).

Things went much better this time; she had taken a Percocet and had no pain in her legs. I have to say that I'm on pins and needles because I still am not sure mom will continue with the heavy amounts of Taxol in her body. I keep waiting for her to say, "enough is enough" and ask to lower the dosage and we know it's working because her CA 125 counts were in the 40's compared to the hundreds!! Great news!! I know it is her decision and will support her no matter what, but I want the chemo to kill the "son's of bitches" and quickly.

Mom has another Cat Scan coming up and I can tell she's afraid they'll find more cancer. The last one she had was when they found the fluid in her lungs with cancerous cells, so I can't say I blame her for worrying. I just pray that it will go fine and they don't find anything. She needs some good news...to see the chemo is worth the hell that it brings.

Fuzzy

Mom and dad came over on Monday because I went to the airport to pick up Aunt Marsha, and mom wanted to meet her with me. Mom was wearing a wig. She looked good, but I could tell she wasn't comfortable. Before she left, I told her that I wanted to see her au natural. She took the wig off and looked at me expectantly. I have heard that losing your hair during the chemo can be the most traumatic thing of all, and I couldn't imagine it, so I steadied myself for the worst. But when I saw the small, fuzzy head, the two words I thought of were survivor and hero. I did not cry. I held her and told her she was beautiful.

2nd Chemo treatment

As I said in an earlier blog, it was a 6 hour treatment that also involved the clinical trial of Avastin. She used a topical ointment to numb her skin over her port, so the hooking up of the IV was a breeze this time...yay! She started having problems pretty soon after taking the Taxol with her legs. First it felt like restless legs, and then the pain came. Sharp pains that effects her knees and legs. Her Taxol treatment is a total of 3 hours, so she was pretty miserable during that, but the other two treatments went fine. She was told she could take a half of a percoset if needed next treatment. I was not able to go due to the fact that I still wasn't sure if I was carrying a virus with me. Mom and dad were exhausted, but mom's not able to sleep well due to the steroid that they give. She doesn't sleep well for the first week after treatment.

Yesterday and today she's been feeling fine. Tomorrow is when things might start acting up. I will be heading out there tomorrow morning because I can't stand staying away any longer!! If you have messages you'd like to leave her, write them here and I'll print them out!

Mom's spirits are up and down which is, of course, completely normal. I just pray that her heart is lifted and she still feels the support she desperately needs during this time.

Missing out

I miss my mom. I haven't seen her since her last chemo treatment because she wasn't feeling great the first week after and then my kids have been sick the last couple of weeks.

Now I think I'm coming down with a cold. I just feel like the only thing I can do to help out is to go with her to her chemo appointment and now I have to miss that. I know dad will be there, but it will be her longest chemo treatment (6 hours) and I hate to miss it. However, talking to mom made me feel a bit better because she knows and I know that it would be terrible for me to go to the cancer treatment center with a cold. I could get a lot of cancer patients sick.

I know I've said it before, but I can't stand that they live so far away. With Riordan in school only half day, I can't just make a run over there, it takes 40 minutes to get there and 40 minutes to get back, and Riordan is only gone for 3 hours. Not enough time.

I also missed celebrating my dad's birthday. He needs some joy and some time off. I'm thinking of going to see Push with him, but I know he's afraid to leave mom for too long.

Brian was sick all day today and sleeping a lot. I didn't get too much done for fear my normal activities would wake him. When he gets sick, it really wipes him out. I'm tired of colds and just wish that everyone would get better!!