A very quick update before I get ready to head to The Cancer Center again this morning. Yesterday went about as well or better than I hoped. Having the port placed was slightly more traumatic than I anticipated. Mostly because the schedule was messed up and I was in the OR all prepped on the cold, cold table for a LONG time before the Dr showed up and they gave me the “I don’t care what you do” drugs. I actually have a double port which is allowing my chemo to go faster! The other patients in the room with me yesterday were jealous and my nurse was delighted.
The facitity and nurse were awesome yesterday. The other patients were very warm and sweet too. One of my pre drugs is benedryl, so I slept for most of my infusion. I’d guess that will be common. I got the shakes as we left, but they went away quickly. I was still pretty tired, so I went straight to bed when we got home. At home, my stomach got upset and I got sick a couple times. We got home at around 5 and it was bad until about 8:30 when Danny brought me my next dose of pain killers and benedryl. After that I felt better, snacked a little, and fell asleep and was out most of the night. I’m feeling good this morning, other than my port being sore.
Thanks to everyone for the prayers. Today my treatment is at 9. Danny will bring me home afterward and I’ll be on my own for the afternoon. (Hopefully I’ll just sleep.) The first day is supposed to be the worst and it’s behind me! Hurray!
I got pulled over today for the first time in 10 years. 2nd time ever. Our tags expired in May ’09 (my mouth dropped when he told me.) No registration in the glove compartment, proof of insurance expired 2 days ago… thankfully legally we’re caught up, but my paperwork was sorely lacking. We misplaced the new tags back in May and just never thought about it. Thankfully the officer was super gracious and wrote me a warning. Scolded me for not ordering a new license with my current address (although it was changed in the system.) I cried, which drove ME crazy, but I was thankful for a warning and the chance to correct things before I got a ticket. I was trying to figure out how I was going to fit going to traffic school in with chemo (which prompted the tears.) I’m such a pleaser and have a more than healthy fear of authority, it’s a BIG deal to be pulled over. I think I can laugh about the comedy of errors now…. I think!
In other good news, my lung function test went fine. I was a little below average, but I didn’t tell the 50 year old man who was doing my test that my spanx I’m using to prevent my lymphedema swelling may have limited my breathing some. Teehee!
I AM beginning my year of interferon treatment this Wednesday! I am ready to begin actively fighting! I’m also frightened about embarking on this journey in which I don’t know what to expect. My next blog post is going to be a list of side effects of interferon since they are different than with traditional chemotherapy. I’m hoping that my prayer warriors will be able to pray specifically against the side affects.
Monday I have an appointment at UMC for a pulmonary function test. The kids are going to hang out at work with Danny while I have that done. It’s supposed to be quick! Wednesday morning I have to be at UMC at 8am (EARLY for us!) to have my portacath
installed*. That procedure will take up most of the morning. At noon, I am to report to The Cancer Center. At 1pm, I am scheduled for another baseline x-ray. Then at 2:30, I have my first Intron Alfa-2b
Treatment. The treatment will take 2-3 hours, so we’ll head home around 5pm to see what fabulous side effects I’ll enjoy! (The first dose apparently is the worst and it usually gets better from there.) Thursday I have to be at The Cancer Center at 9am for my second treatment. My sweet friend Tina has agreed to drive me there so Danny can get our kids off to preschool. Friday is another interferon treatment, but I don’t know the time yet. The positive thing about having to be at The Cancer Center for 3 hours a day/ 5 days a week is I anticipate the time will go quickly!
Thanks to everyone who is praying for me and has taken the time to read all the details of my week. I know that typing this out helps me process everything. I read an incredible perspective of suffering and healing on Beth Moore’s LPM blog today
. I am hoping to share this attitude of expectancy for the change God has to do in my heart and spirit. Not bad change, but His transforming work. As Beth said, I will NOT end this journey the same as I began it. “If I am[the same], I will have missed something huge. Something vital. Something life-changing between Jesus and me. And I do not plan to miss it for this world. It’s why He has me here. ” I’ve prayed that God would transform me to love like Him at ANY cost. I don’t plan to waste this experience.
Amen and amen!
*I will be considering myself part Borg from then until it’s removed. Resistance to my dorkiness is futile!
Today was a big day of appointments! This morning I had my first appointment with the dermatologist at the Cancer Center. She was very nice and went over all my background infomation with me and then did a full body check for suspicious moles. She was very personable and the check was easier than I anticipated! She said I’m a pretty simple case and there are only two moles she wants me to watch. She instructed me to do monthly skin checks myself and only needs to see me every six months! After seeing Dr. Curiel, I was talked to by a health educator about sunscreen and wearing long sleeves(cue eye roll on my part) and given some sunscreen samples. I heart samples!
Danny and I took a break from the cancer center for lunch. After lunch, we met with Dr. Cranmer, my oncologist. He was FULL of information and made sure we understood his role as well as interferon and the controversy surrounding the treatment. Essentially, it’s not a super effective medication, but it does improve odds for some people and is the only treatment available. The current plan is for me to start Interferon next Wednesday, the 16th. I need to have a pulmonary function test, chest x-ray, and IV port put in before I can start. So, I have a busy few days in front of me! I will be having 20 days (4 weeks, 5 days per week) of high dose interferon followed by 11 months of 3x per week self administered (by injection) low dose interferon. Interferon is a protein the body makes naturally to fight infection. So, although I am hopefully already cancer free, Interferon will increase my immune system and help it defeat any remaining melanoma cells in my body. I am also starting an antidepressant tomorrow since 40% of patients on interferon struggle with depression and an antidepressant is considered part of the course of treatment.
In the last part of the afternoon, I took part in some “word games” as part of a study and had bloodwork drawn. At 4:30 we finally left to pick up the kids from my parents after a LONG afternoon! I’m glad to be home and have the appointments behind me. I dread beginning the treatment, but I am glad to begin putting it behind me!
It’s December already! It was a great day. We are back to a normal schedule this week. I took the kids to school this morning (although Danny was sweet enough to help me get the kids ready.) It was a super productive morning. I got some VERY overdue books returned to the library, hit the grocery store twice, made a new jesse ornament (more on that later), had the car washed, made homemade butternut squash soup and took care of kids! It was a MAJOR victory for this girl who has been on the couch recovering from surgery for the past two months!
Tonight we started our advent celebration with the kids. It’s a variation of a Jesse Tree which is a Christmas tradition explained best here
. He’s an excerpt from their website. Jesse Trees are all over the internet now, but this website is where I found the first and best information when I started researching this tradition a few years ago.
What is a Jesse Tree? It is a tree branch decorated with symbols representing the stories of people in Jesus’ family tree. In Isaiah 11:1 we read, “A shoot shall come out from the stump of Jesse, and a branch shall grow out of his roots.” Jesse was the father of David, Israel’s greatest king. And it was from David’s lineage that Jesus came. That’s where the idea of using a Jesse Tree to celebrate Advent came from. Before a symbol is hung on the branch, a Bible passage or a story from a story Bible is read.
I’ve augmented our tradition a bit. I picked stories and ornaments to fit with our favorite children’s Bible. The Children’s Storybook Bible
fits with the Jesse Tree tradition perfectly. Every story is written in a way that points to the promise of Jesus. It is absolutely beautiful. I’m making felt ornaments for us.
Since I last posted I’ve…
- experienced a VERY painful infection at my drain spot
- had my drain removed after a month! thank God!
- lost the ability to straighten my left leg entirely
- developed a bad habit of keeping my weight on my right leg with my left knee bent
- worked to almost straighten my leg and reduce my limp
- freaked out doing lymphedemia research and experiencing swelling in my leg
- tried to find a suitable compression garment to aid swelling
- been more mad at God than ever before in my life
- cried and cried
- enjoyed my family in ways I never knew before
- started walking to get in shape after 4 weeks on dr ordered “leg rest”
- gained back the weight I lost between surgeries *see above 6 weeks on couch
- detoxed from 7 weeks of vicodin and percoset -that sucked, but I did it!
- turned 30
- been whisked away for a romantic weekend with my husband
- had 2 new dishwashers installed
- wished I could wake up from my nightmare
- hated how this is affecting my kids
- hidden from people who love me
- read a life changing article from John Piper called “Don’t Waste Your Cancer”
- been overwhelmed at the information i wanted to share here
- watched WAY too much TV
- found out my lymph nodes were free of cancer other than the original one they removed
- wanted my healthy lymph nodes back
- dreaded the year of treatment that feels like it’s never going to start
- made an appointment for Dec 9 with the oncologist who will plan my treatment
- hoped to start treatment the next Monday because I want it BEHIND ME!!!
- realized I’ll probably miss Christmas because of this, but I just want it done
- received a ton of love from family and friends in the form of phone calls and mail. thanks.
I’m sorry this is mainly negative. I’m trying to be real. It’s such an odd thing to most likely be “cancer free” yet be looking forward to a year of treatments that are going to make me sick. It feels so unfair, not just to me, but to Danny, my kids and my family. Danny and I counted last night and I’ve had 6 surgeries in the past 5 years. It’s been a lot.
I do not believe that this song was playing by accident as I wrote this… God is good!
Wait and See (selected lyrics)
by Brandon Heath
There is hope for me yet
Because God won’t forget
All the plans he’s made for me
I have to wait and see
He’s not finished with me yetStill wondering why I’m here
Still wrestling with my fear
But oh, He’s up to something
And the farther on I go
I’ve seen enough to know
That I’m, not here for nothing
He’s up to something
I’ll post something more positive tomorrow for Thanksgiving. I have much to be thankful for.
This is my husband. He’s the best friend I’ve ever known. He loves me on my ugly (inside and out) days. He’s an awesome dad. We’re a great team. Danny has walked with me through more health issues than we ever could have imagined when we promised “in sickness and in health.” He takes care of me, the kids, the house, and a full time job. We are blessed with family and friends who help shoulder the burden, but he does more than anyone can probably imagine.
Danny, you are one of the most selfless people I know. I am so glad you choose me to share your life. I look forward to celebrating many many more birthdays with you. I love you.
What’s life like as a Melanoma patient? At the moment, it’s pretty darn boring! We started a new family routine today that will carry us through my first month of interferon treatment and perhaps for awhile afterward. I’m hoping to be able take over most of the kid duty after that first intense month of treatment. At the moment the kids are going to school full days on Mondays, Tuesdays and Thursdays. Danny drops them off at 9 and my Mom is picking them up at 4. Mom takes them back to her house and then Danny picks them up on his way home from work around 5:30. I predict they will be exhausted and I am going to learn new appreciation for those evening hours with them. (Or, they’ll be grumpy and I’ll just want to put them to bed like normal!) 🙂 On Wednesdays through my first month of treatment, my Mom will have the kids for the day and is going to help me with some laundry and housework. My Dad is changing his work schedule so he can watch the kids on Fridays. Once I start treatment, Danny will drop me off at the cancer center (very close to work for him) in the mornings and then drive me home at lunchtime.
It’s been a semi-rough day emotionally. Being a stay at home mom is SO important to me and although this is for a limited time, it’s tearing out my heart to not be able to take care of the kids. Cancer has taken away a little of my identity as a mom and it’s just another reason cancer sucks. My kids couldn’t be in better hands. I just talked to Mom and Joey did well today, but Abby is struggling. She’s been showing more anger lately. We’re trying to stay consistent with discipline and grace. Both kids ask about my drain and back. Abby is a little more interested in the drain and is already asking when I can “take it off.” We watched the Arthur episode about cancer with the kids last night. We haven’t explained that Mom has cancer. They’ve probably heard me talk about it on the phone. We’ll probably talk about it more specifically this week as we adjust to our new routine. Please pray for all of us as we adjust!
Couple updates from today…
- Although I wanted to run away and skip surgery today, the surgery went MUCH better than expected. NO med students involved today which was wonderful! I know they need to learn, but I am such an introvert, their presence is really disturbing to me. Sorry friends in med school!
- I’m on percocet and feel better than I did yesterday on Vicodin! I am for sure a percocet girl!
- My back stitches are out! I’m much less itchy and more comfortable, although that may be the percocet. 🙂
- The drain isn’t as bad as I imagined. It is going to be hard to hide under my clothes. My left leg is going to have a noticable lump for the next few weeks!
- My CT scan came back clean! Praise God!
- Dr Warneke showed us the original pathology and the amount of melanoma in the lymph node was 0.2mm. TINY! Dr. Warneke said he expects the nodes he removed today to be clear which gives me a 50% chance of being cured. Excellent odds for melanoma. If I’m not cured, I’m in for a fight with melanoma that reappears. I’m still going to win this battle!
Thanks for all the prayers today. I had the BEST nurses and things went very well for a day that well… let’s just say surgery is losing it’s charm for this girl. I’m hopefully done for a LONG while!
I got the kids ready and delivered them to and from school today. It was wonderfully normal! Abby hid from me when I went to pick her up. She did NOT want to come home! This made me feel better about her going all day next week (T/TH). Joey will do great, but my baby I worried about. It will be especially nice that Joey and Abby will be together for lunch and the afternoon class. We are SO blessed with incredible teachers at their school. When I first got my diagnosis, I asked God why this couldn’t have waited until the kids were both in school all day so their daily schedules wouldn’t be so interrupted by my being sick. But, it’s become abundantly clear that the flexibility of Light the Way and most importantly, the love their teachers have for them and our whole family is going to be such a blessing to us as we walk this road. There is NOWHERE I’d rather my kid be than with their sweet teachers if they can’t be with me.
The kids are napping and I am spending naptime previewing an Authur I recorded to possibly show the kids. All this week, PBS is playing a special episode about cancer. Lance Armstrong “guest stars” in cartoon form in this episode. We haven’t told the kids that I have cancer. Just that I had a mole that could make me sick that the doctor cut off. We still have some decisions to make about what we are going to tell them. I’d appreciate prayer for wisdom in that and peace for our sweet kids. Abby’s first words to me this morning when I woke her up and carried her to the living room were “Mommy, does your back feel better now?” So, they are definitely aware of how I’m doing.
Tomorrow is my lymph node dissection. It will be sometime in the afternoon. The kids are staying with my parents for a couple nights. I’m off to rest and call for my report time tomorrow!