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.
Monday, October 26, 2009
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...