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!
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!
After dropping off the kids, we headed to the Medical Imaging place. I was very nervous about the barium drink. I had a CT scan in May before my hysterectomy and that thick barium just barely went down. It was terrible! I was VERY pleasantly surprised when I found out the imaging facility I went to has a “fruit punch” drink instead of the thick barium. It wasn’t yummy, but it was thin like water and easy to get finished quickly! I then read* and waited for my turn to have my scan. The scan was easy. I loved that they didn’t make me change into a hospital gown! The tech did an awesome job getting the IV in one stick and listened to me when I recommended which arm had the best vein! The whole thing was easy and I’ll hear the results tomorrow. The scan was to check and make sure the melanoma hasn’t metastized into any organs or other areas of my body. I have a lot of peace about the results. Especially because the melanoma was only in one of my lymph nodes that they removed. It shouldn’t have had a chance to move anywhere else!
After my scan we went to the cancer center for a quick visit with my amazing nurse coordinator, Lindy. My incision is looking awesome, but each of the places where my stiches come through my skin are bright pink, swollen, and burn! Apparently this is normal and my incision area is healing wonderfully! She took some time to explain the drain that is going to be put in on Wednesday and what we will need to do to take care of it.
This is a picture of what the drainage tube will be. The white part is under the skin and the bulb acts as a vacuum to gently pull out fluid and can be removed to drain it. How am I going to hide this under my clothes? Any ideas? I will keep the drain until I am having less than 30cc’s of fluid drain in 24 hours. Lindy warned me that my body is NOT going to happy that I am having surgery again and I should plan on it not being an easy recovery. She also reminded me to be eating well and sleeping and recommended Ensure for days I have trouble eating. It was a good appointment and I’m glad I got to see her before my surgery on Wednesday!
We went to get the kids and they were horridly behaved because they didn’t want to come home! Abby cried until she fell asleep in her carseat and Joey was quite pouty. Vegging in front of the TV, cuddles with Mom and a snack cured the grumps and we were glad to see Danny home a little early!
Tomorrow brings preschool after a week off. Hooray!!! I’ll be on my own tomorrow and look forward to one last day with just the kids and me before another round of recovery!
*I started reading “Get out of that Pit” by Beth Moore today. It talks about three different types of pits people end up in. The pit I identify with right now is the one you’re “thrown into” I really am excited to see what Beth has to say about how to get out of this pit that I didn’t chose and feel like was thrown on me rather than me falling into it! It is important to me that I use this time to learn every lesson God has for me as much as I can instead of just coping and getting through it. I’m sure there will be days that the best I can do is get through, but my God is big enough to use even the worst days to teach me about His comfort and love.
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.
I ended up calling Lindy later in the morning, finally ready to ask the question I’ve been too scared to ask. If my lymph node dissection comes back clear, will I need to do the year of interferon treatment (the equivalent treatment to chemo for melanoma?) The answer was a solid yes. It’s my best chance to prevent recurrence. Once the drain comes out after my lymph node dissection, I will begin a month of high dose treatments, followed by 11 months of self administered shots. I had thought I was out of tears, but there were a few more at this confirmation. I’m so thankful the kids weren’t home. THANK YOU MOM!
Now we begin making plans. For my first month of treatment, it sounds like I will need rides to and from the cancer 5 days a week and the advice I am hearing from other interferon recipients is I won’t be up to taking care of the kids, so we’re going to need to figure that out. We have some good beginnings for those plans and I am so thankful for the community of support we have.
- 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!
“Consider it a sheer gift, Martha, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you … Read Morebecome mature and well-developed, not deficient in any way. If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it.” James 1:2-5 (adapted for me by my sweet friend Amber)
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.
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.
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. 🙂
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.
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!
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.
For those of you who have asked…
I will go to nuclear medicine at UAMC 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.