Sunday, December 20, 2009
Saturday I woke up feeling good and normal! It was a nice surprise. We took it easy for most of the day and went out to dinner with my parents and then took the kids to Frost. It was warm enough to be out without jackets and walking around the shopping center with the kids was a blast! It was a totally unexpected gift to feel so good!
It was a surprise on Sunday to wake up feeling blah. I had a headache and shakes when I woke up (a little like low blood sugar shakes, but less severe.) I fought fatigue and dizziness most of the day. Kinda lame, but I'm going to have to learn to take advantage of the good days and rest on the bad. Tomorrow begins my first full week of treatment, I appreciate your prayers!
Friday, December 18, 2009
Yesterday I woke up feeling great! My port was sore (I have two incisions that need to heal.) So I took some pain meds and got ready for the day. I even felt good enough to help the kids get dressed for school. My sweet friend Tina picked me up and drove me to The Cancer Center with her 11 month old adorable son Timothy. Danny stayed home to finish getting the kids ready for school and drop them off. I got my port plugged in and set up with my pre-interferon pepcid and benedryl. Filled the nurse in on my side effects from Wednesday. She hooked me up with numbing cream to prepare my port for the new needle on Monday (they'll take out the access today.) And Agnes and Carrie (NP and nurse who work with my oncologist) came to visit me and wrote a prescription for anti-nausea meds for me. The benedryl knocked me out quickly after that and I slept through the rest. Danny picked me up and dropped me off at home. I made him pick up the anti-nausea meds for me, which of course I didn't need then. I slept until Danny came home and felt good last night! The kids spent the night at my folks which makes the morning easy for us!
Thursday, December 17, 2009
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.
Monday, December 14, 2009
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!
Sunday, December 13, 2009
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.
Thursday, December 10, 2009
Tuesday, December 01, 2009
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!
Wednesday, November 25, 2009
- 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.
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
Monday, November 09, 2009
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.
Monday, October 26, 2009
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.
Wednesday, October 21, 2009
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!
Tuesday, October 20, 2009
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.
Monday, October 19, 2009
Today was my Dad's turn to be my chaffeur. I think by the time I'm through this "trial," I'm going to need driving lessons because I haven't driven in such a long time. Except, I'm taking the kids to school tomorrow and I guess that will be enough driving practice to make up for the last month of driving withdrawal. Anyway... my sweet Dad picked us up at noon and we took the kids to Matt and Alli's for the afternoon. Bless them for sacrificing their kids' nap time and their quiet time for me!
Thursday, October 15, 2009
Last night I hit a wall emotionally. For a couple days I had kept thinking, "This isn't what I asked for. This isn't what I want." It probably sounds stupid, but it was the way I was processing and accepting my new reality. Last night we went to bed late and I just fell apart without any warning to poor Danny. I sobbed and raged and spilled every awful thought and fear I'd tried not to have in the past month. The emotion surprised me as much as it did Danny, I think. After going through about half a box of kleenex, I settled down enough to get to sleep around 1:30am. Poor Danny got less sleep than I did when Joey woke him up after a bad dream and wanted to cuddle. The alarm went off at 7:15 and Danny called my Mom to ask her to cancel our morning plans. She sweetly offered to take the kids and she and Danny got them ready before I even woke up. I am well cared for. I woke up and Danny was on the phone with Lindy, the nurse coordinator for melanoma patients figuring out why my stitches are driving my crazy and getting a refill of pain meds for me.
Monday, October 12, 2009
- Impulsive trips to Phoenix for lunch at a park and a visit to IKEA
- Elice (my next door neighbor growing up) and her visit while I was in recovery and Danny was in the waiting room
- that Dr Warneke took 2 lymph nodes from the left side so even though one showed cancer cells, we know because the second didn't!
- flexibility at work for Danny and a compassionate boss and coworkers
- prayers and love from family and friends
- kids who are great sources of something to think about other than the c-word
- a high school friend studying oncology and offering support and information based on her knowledge and passion
- meals to feed my hungry growing kids
- fall weather, open windows and a new screen door on my back porch!
Thursday, October 08, 2009
It's not the news we were hoping for, but we are hopeful. The nurse was very emphatic that this is NOT devastating news. I'm dreading more surgery and the swelling that accompanies the the loss of more lymph nodes. We're going to need our community to help as I recover again. I'm not up for talking. Danny has been my sweet spokesman all day. I appreciate continued prayers for healing and peace.
After a LONG day of waiting for a call, Danny finally got through to our nurse coordinator, Lindy. The margins on my back are clear of melanoma (which means there is a 2cm cancer free border, side to side and deep, of the area they removed on my back.) The two lymph nodes they removed from my right leg were clear, but on the left side there were traces of melanoma in the sentinal node (the first node lymph reached from my back) although the second node was clear. This is a really excellent sign that the melanoma spread is most likely limited. I will have more surgery to remove the rest of the lymph nodes from my left leg and a PET and CAT scan at some point. Tomorrow I'll get a call about scheduling.
Sunday, October 04, 2009
I got signed in at the front desk and went straight to registration where they asked me AGAIN if I'm a smoker (no) and how much a drink alcohol (less than two drinks a week.) Dr W came and found us in registration to get the pictures of my scan from me (apparently he'd been pacing the halls waiting for us.) He quickly looked at them, and told us he would probably remove two lymph nodes from one side and one from the other. We got to sit in the waiting room for a couple of minutes before a nurse tech brought us back to the pre op area and took my blood pressure and asked if I smoked or drank. She then handed me off to my nurse, Kim (a guy) who had me change into my pretty hospital gown, gave me my bracelet and asked if I drank or smoked. The next 20 minutes were a blur or meeting residents and med students and anesthesiologists. There was a much too long failed IV attempt by a med student before Kim my man nurse saved the day by getting an IV in while another anesthesia student was tying off and checking out my other arm for good veins. Thank you God for Kim. The anestesia student REALLY seemed to want to give me an IV, he kept telling me it might need to be redone while I was in surgery. I woke up with the original IV, so I think he missed out on my vein awesomeness. I said goodbye to my sweet husband and they gave me my "happy juice" and rolled me off to the operating room. I woke up in recovery and most of what happened after that is a blur of a sore back and nausea. Maybe Danny can post about the rest of the day.
When we got to the check in desk, we were greeted with a bright "We've been waiting for you!" Danny was given a patient number for me and told he could watch a screen to see where I was in the process of pre-op, surgery, recovery and some other designation. It's much like at the airport to tell you when flights are arriving and boarding. It sounded great, but apparently I never moved from the pre-op spot on the screen, so... anti climatic. :)
Saturday, October 03, 2009
We woke up at 6 to get ready for the day. We were due to report to Nuclear Medicine at 7:30. Nuclear medicine is in the basement of the hospital and the place looked like a bunker. The reception window was very narrow and surrounded with stainless steel. There were classic yellow with burgandy print radiation warning signs on the walls. There was only one radiologist, Bill, working that early and one other patient there when we arrived. Bill came to the waiting room to get me and let Danny know the scan would take about 45 minutes. He sat down with me and explained exactly what he was going to do and was very sweet about helping me find the most modest way to cover myself with two gowns and a blanket. I started out laying on my stomach while he injected the radioactive dye in 4 spots around the biopsy site (where my mole used to be.) The needle sticks were easy, but the dye burned as it was injected. Once the dye was injected, he firmly massaged the area to get the dye started moving into my lymph channels. I then flipped onto my back and (... got nauseous and fell asleep on the couch before I could finish my story...:) Once the dye was injected, I laid under a large x-ray machine and the tech took photos of the dye moving through my lymph channels to my lymph nodes at 15 minutes, 10 minutes, 5 minutes, and 3 minutes. Mine went around both sides of my hips into lymph nodes at the tops of my legs on either side. I'm SO thankful it didn't got to my armpits! The technician took photos for the surgeon and then marked my legs where the lymph nodes were. He then made sure I understood that the dye indicated the lymph channels in my body, but indicated NOTHING about cancer. Based on where the dye traveled, the technician guessed I would have two lymph nodes removed on one side, and one removed on the other side. By the time all this was finished, I was about 5 minutes late for my surgery report time at 9am. My sweet technician took us up the "Emergency Only" elevators (they also are designated for transporting radioactive material, which apparently, I was!) and walked me to check into surgery where they were waiting for us.
It's 3am and my day of sleep has caught up to me, I have a little bit of insomia. Thankfully, I'm feeling pretty good. The house is so peaceful tonight. My sweet brother paid for my house to be cleaned today while we were at the hospital and this woman worked her rear off! It was SO nice to come home to! Thanks James! It's raining outside and I feel wrapped in Gods peace. Thought I'd spend some time writing about what happened today while I remember it!
Thursday, October 01, 2009
I will go to nuclear medicine tomorrow at 7:30am for a scan in preparation for my sentinel node biopsy. They will then send me upstairs for surgery that is scheduled at 9am. Someone has been praying, because it was originally scheduled at noon! I'm thankful to not have to wait. Thanks for all your prayers. My parents have our kids tonight and tomorrow night. Poor Danny is knee deep in the cold I've had and I have just started coughing. Please pray that we will wake up feeling like new people and that my surgery will be able to go ahead as scheduled (I was told they won't postpone it unless I'm very run down or running a fever, so I think I'll be good to go ahead.) Thank you so much for the incredible prayer covering we have felt. We will update tomorrow, but we won't know the results of the surgery until next Thursday.
For those of you who have asked...
Monday, September 28, 2009
I am in full on introvert mode and don't feel much like talking to anyone. Especially when I know calls are probably going to discuss the c-word. Yes, I'm screening my calls. No, I haven't been replying to voice mails or emails. Partly because I'm trying to protect the kids from overhearing scary things and partly because if I could, I would be spending the week in bed with my covers over my head. I am SO appreciative of all the sweet thoughts and nice notes on facebook and email. They mean the world to me. I would assume I'll have days I'll want to chat, but for now, please forgive my behavior that has Emily Post rolling over in her grave right now.
Friday, September 25, 2009
Danny and I left feeling well taken care of and very hopeful. I'm sure it was in large part due to the incredible prayer coverage we had from our friends. I am at peace about the future. Thank you for the incredible support we've been given.