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.
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.
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.
Yesterday (9/24) was my first appointment at Arizona Cancer Center since my Malignant Melanoma diagnosis last Wednesday. Right away, Danny and I were completely impressed with the center. It’s a new facility with pretty landscaping outside. The lobby is huge and lovely with a player piano (a three year old was “helping” play when we first walked in. We started at check in and were warmly welcomed and given a pager that looked like the discs you are given when waiting at a restaurant. It had a readout on it that instructed us where to go when it vibrated. We had just a minute to sit down and notice the book lending libraries when the pager alerted us it was time to go to registration. We were greeted at the door of the registration room and got all signed in with health insurance. Thank you Lord for our health insurance! We then were walked to my doctor’s office, on the way we got a mini tour of the facility. There is a Sunstone rescource center for support groups, nutrition, and massage information, a lab on site, free WiFi available, computers for visitor use, a library and a cafe where you can get a free drink and snack each time you are there for an appointment. I had new patient paperwork to fill out, then we were taken back to wait for Dr Warneke. Highlights of our wait were changing into a highly fashionable hospital gown and then figuring out I needed to go into the hallway to pee. I HATE that! Two surgical residents came and looked at my back, asked some questions and left. Dr. Warneke came in a bit later. He was warm and kind. He looked at the spot on my lower back “formerly known as my mole” and did some probing of my lymph nodes. He explained that the size of my melanoma was intermediate, which means we didn’t catch it early, but we didn’t catch it late, either. There is about a 20% chance that the melanoma has spread to my lymph nodes. But, it is highly curable at this point. I will be having surgery this coming Friday (October 2.) They will remove a large oval of skin around the melanoma to make sure there is a “clear border” of healthy cells around what they remove. The oval will be about 4″ x 3″. They assure me that everyone has plenty of back skin to compensate for this hole they’re making. Lucky me will have a scar on my back to match my c-section scar on my front! They will also be injecting a dye around the mole before surgery and doing a scan to see which lymph nodes drain the area around my mole. Dr Warneke will remove the first lymph node the dye reaches and it will be sent to pathology to test for cancer cells. The pathology results should be available sometime on Thursday October 8th. If the lymph node is clear, I will see a dermatologist ever 3 months for the next 2 years. If the lymph node shows signs of cancer, I will be put on a medicine called Interferon which suppresses the melanoma. It isn’t chemo, but it has it’s “fair share of side effects.” Dr. Warneke said it feels like you have the flu for a year. We then met with the nurse coordinator who gave us more information about post op care and melanoma treatment. She even called me this morning to check on me and ask if I had questions! I had some lab work drawn and was given orders for a chest x-ray. 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.
This has been the longest and scariest week ever. I had a colonoscopy on Monday to begin the process of helping my IBS symptoms. Thankfully, it didn’t show anything bad. Whew! Get on with my week, right? Tuesday was my “easy” appointment of the week. Went to the dermatologist seeking acne treatment and to have a mole on my back removed. I knew it needed to be removed and checked, but never would have guessed I’d get a call the next day that it was Malignant Melanoma. My world is upside down. I’m waiting for a call from the AZ Cancer Center and waiting sucks. I’d probably better get used to it, eh?