biochemo, biochemotherapy, Cisplatin, Dacarbazine, IL 2, Interferon, Interleukin 2, Lymph Node Dissection, Lymphedema, MD Anderson, melanoma, metastatic melanoma, Stage 3C, Stage IIIC, Vanderbilt, Vinblastine
I was diagnosed with Stage 3C Metastatic Melanoma in March 2010. In April I headed to Vanderbilt University where the very capable Dr. Mark Kelley was scheduled to removed “quite a few” lymph nodes in my right groin, pelvis, and abdominal area. He’d change the subject when I asked how many. He joked about how he’d have to “pull everything out of there, dig out the lymph nodes, and put it all back”. Having never been sick, and having only been to the hospital to give birth, I didn’t think it was that bad. It was rough. I ended up with two big incisions and three drains. It was a tough six day hospital stay. I thought I’d never eat or digest a meal again. A few lymph nodes turned out to be thirty-seven. Fourteen were cancerous, but of those, eleven only microscopically so. I wear a compression stocking on my right leg, from hip to toes, every day to control the swelling, (lymphedema) and I always will. It was clear to all involved that the lymph nodes must come out, but the follow up treatments weren’t so clear to anyone. We chose to go with radiation at Vanderbilt and biochemotherapy at MD Anderson in Houston, TX.
Friday, April 9, 2010
Sorry for failing to post until tonight but the last 24 hrs have been rough, friends. I ate a salad and a couple of bites of meat for dinner last night which threw me into a severe bought of nausea and painful gas. My mom was up with me all night. Tonight is Alan’s turn –
Happy 16th wedding anniversary to us!
Dr Kelley says my colon is full of air (moderate to servere case of illius) and I need to be getting up and around more. I am trying so hard but tonight I’m getting mad about this and am going to try to get around the ‘block’ on the floor each time I get up. I have 3 drains in my wounds, one of which must slow down draining before I can go home. It’s been refilling constantly since Monday. Now it’s looking like Monday before I can go home. Keep those prayers coming!
Many thanks to everyone helping with kids & meals – it’s a huge relief to not worry about those things.
Sunday, April 11, 2010
After another long night at Vandy, this time battling off hallucinatory spiders, I’m happy to say I’m off of all the heaviest of drugs. I *might* be heading home after lunch! But first, I need a nap.
Friday, May 7, 2010
Today is a great day! In the last 24 hours I’ve been blessed to see #1 get a National Science Olympiad award, go to a very special Mother’s Day lunch with #3, and see #2 mini-me perform on stage in our school’s Grandparent’s Day show – a salute to the fifties. I’ve walked 1/2 mile or so and I’m planning to repeat it later today. Also, on a successful parenting note, I’m happy to report that all children have a crystal clear understanding that “Two Weeks Later” does not qualify as “Immediately” under the “You Must Report a Lost Cell Phone Immediately” clause of their current childhood contract.
I don’t want anyone to get the impression that I’m down, because I’m not! Alan & I both really liked my first medical oncologist who will be coordinating my on-going care with Vandy. He was empathetic, easy to understand, and really took his time. I have been a Stage IIIc patient for 2 months and I know the stats. Whenever I feel my mind slipping to that deep dark abyss I employ one of my emergency tactics. These include saying a Hail Mary and playing Prince’s ‘Let’s Go Crazy’. Not together.
Today I’ve been emailing, calling, having records and insurance info faxed, tracking down contact people, and doing everything I can think of to get things moving. MD Anderson should be getting my records today and should be calling me back Monday about a consult. Please pray that it will be within the next 3 weeks or I won’t be able to consider them.
TN Oncology has my records and I have TWO secret undercover friends are putting in a good word for me with the doctors themselves. When they hear how smart, funny, and dog-gone special I am they will clear their calendars for me! They are also supposed to call me back with an appt for a consult.
Right now I have an appt with a Vanderbilt radiation oncologist for 5/17, a PET scan in July, a dermatologist appt in August. Today I’m especially thankful for my friends from Holy Family Catholic Church during this roller coaster ride.
“My Father if it is possible, let this cup pass me by” Matthew 26:39
Tuesday, May 11, 2010
I have always been brutally, stubbornly independent. I realized clearly and early though, this cancer is much bigger than I am. I cannot handle cancer alone. Today I’ve felt Him stretch down a gentle hand to help me.
The phone rang this morning as I was praying for patience for myself and for a sense of urgency for the people in charge of scheduling appointments. The scheduling nurse with TN Oncology was calling to confirm my appointment for this Thursday. I later found out that this practice is currently scheduling 6 weeks out.
I was also able to get an appointment for May 27th at MD Anderson in Houston. This is day 52 of the ‘start treatment within 60 days of surgery’ deadline I was given at Vandy. I was disappointed to be unable to see either doctor that was recommended to me – one is retired, one is unavailable for another week. So I nervously scheduled with a doctor I’d never heard of. Remarkably, he’s the deputy chair of the department.
I can feel God intervening for me and speaking through friends. The prayers are working. I am so grateful. Keep them coming as we meet with people we don’t know, to decide something we barely understand. I’m determined to preserve this ultimate, yet most basic gift any of us is given.
Thursday, May 20, 2010
This week Alan and I met with the Radiation Oncologist. He’s recommending 3 weeks of treatment. He also referred me to a lymphedema specialist to proactively control the swelling in my right leg. Due to the large number of lymph nodes removed, the lymph has nowhere to drain. My leg feels good and the swelling is minor now, which is good since they are unable to find the time to schedule me. Anyone want to wrap me up before I board a plane? You should hear my feigned sincerity as I make my daily round of follow-up calls – appointments, records, insurance. I think I’ll need an agent after this is over with.
I just can’t read the medical pamphlets they’re giving me anymore. Some contain pictures of elephantitis. I’ll just deal with side effects as they come instead of worry about them all. I always thought one of the kids would be headed for the side show business, but certainly not me.
I’m having a PET scan and a CT scan Monday. I’ll see Dr. Infante Tuesday and he’ll review the scans before I go to MD Anderson. He’s talked to the doctor at MD Anderson and called me twice at home this week to personally follow up. I was completely stunned.
I wish I had time to go to Med School or re-take my HS Biology class. It’s hard to know what to do. I pray we come back from MD Anderson a week from today with a clear path for treatment. I MUST start something immediately after, or they will try to have me just ‘wait and watch’.
I’ve been saying this since March – my life is no different than anyone’s. There are no guarantees. None of us knows when the end will come. Shouldn’t we all be living today like it’s our last? It’s so difficult. I pray to go out old and laughing without a care in the world.
Tuesday, May 25, 2010
The PET/CT scans from yesterday came back looking very good thanks to Dr Kelley’s fine surgical work and lots of prayers. I am technically disease-free – NED (No Evidence of Disease). This validates my decision to wait and go to TX for a last opinion. Also, somewhat miraculously, the lymph nodes in my left leg (*NOT* operated on) which were lighting up (possible cancer) in March, were *NOT* lighting up in yesterday’s PET scan. I’d been told by Dr Kelley that they probably couldn’t be removed, since so many others were coming out. Whatever cancer is working on me right now, it’s tiny and not an imminent threat.
I had my blood drawn today to see if I qualify for a clinical trial at the NIH. The clinical trials I was offered at Vandy were 50% placebo, but this is a trial where everyone gets some sort of treatment. Like the Catholic Church, I’ve felt strongly the last few years that tinkering around with genes is wrong. Sure it’s easy to say. But to live it when it really matters, that’s something different. I’ll have to think and pray about it.
Surprisingly, the lymphedema therapist from Williamson Medical called me this morning after 8 days of waiting. First thing tomorrow she’ll check the swelling in my leg, massage it, and wrap it up for the trip. I’m thankful since I’m getting a little worried about it and it’s hurting me.
We’re praying that MD Anderson helps provide a clear treatment path. If my Duke TIP scholar, whom I am so proud of this year, gets a Middle School award – please cheer extra loud and take a picture for me. Now if I could only remember who borrowed my spurs and 10 gallon hat.
Friday, May 28, 2010
Wednesday morning I met with a lymphedema therapist to have my leg wrapped for the Wed and Thursday flights to and from Houston. I’m expecting an Ace bandage, I came out looking like I had a full leg cast on, down to my toes. Back home, repack, stop at Target for a sandal I can wear, then it was on to the airport.
In Houston I finally met a doctor who told me he had patients with my diagnosis coming in for their 10 and 15 yr check-ups. The MD Anderson Cancer Center is probably as big as Vanderbilt’s entire medical center. The Medical Center area in Houston is staggering – block after block of hospitals and specialty centers. As we waited outside the cancer center, Alan and I both had the same thought. It reminded us of Disney World. Shuttles in and out – every hotel you can name. Lost travelers wandering around to get their bearings. Only these tourists were limping, bald, with bandages and wheelchairs. Welcome to Cancer World.
Tuesday June 1st I’m starting radiation treatment and lymphedema therapy for the swelling in my leg in Nashville. I’ll go every weekday for 3 weeks, but this could extend another week. Then I’ll be given a week or so to recover and I’ll undergo some testing to ensure I can handle the treatment protocol at MD Anderson.
I’ll be heading to MD Anderson around July 1st for bio-chemo therapy. This is administered 1 week in the hospital in Houston, then 2 weeks of recovery, 4 times. I will be able to come home during the 2 weeks off. This is nasty cocktail of 3 chemotherapy drugs + 2 man-made proteins shown to boost the immune system. It’s a controversial treatment, but I believe it is the option for me. It’s the most aggressive thing out there, but it feels right.
I feel the pieces falling into place for me. I have a plan. Edging just up to the window I was given to start some kind of treatment, I’m ready to get going. It scares me to imagine Alan juggling his job, summer vacation with 3 kids, and me hobbling back and forth to Houston but I believe the Lord with help us through this. Just as He has finally shown us the path He wants me to take with this disease. I feel Him every day through everyone around me.
I’ve had two of my biggest prayers answered this week – a path for treatment and a feeling of peace that my family will be OK. I look at the life Alan and I have built around us in 16 years of marriage – our friends, our faith, our family and all of a sudden I see such power and strength. It has brought me such peace. Now on to kicking this cancer for good!
If anyone wants a free trip to Houston to babysit me, let me know. I’ll warn you though, accommodations will be spartan.
Thursday, June 3, 2010
I started radiation this week and so far I’m a little tired but feeling great. They are targeting the area in my right leg and groin where the lymph nodes were removed. It’s like getting an xray – I don’t feel anything. Most organs in that area are not in the field of radiation so the side effects should only be some burned skin and intestinal discomfort but I’m planning to skip that!
As of now, I’ll be getting a total of 16 or 17 radiation treatments, so this puts me at June 23rd for finishing radiation. Then we could make the first trip to Houston a week or so after.
My radiation oncologist told me a story about a man with anal cancer who was SUFFERING BADLY from his treatments, and the doc didn’t know why. As he lay on his back for treatment, he was trying to ‘protect’ his most sensitive parts by covering them with his hand and pulling them up – right into the radiation beam! He called this effect “They plump when you cook ’em!” It could ALWAYS be worse!
This week I’m having therapy on my leg and it’s wrapped hip to toe in several layers of bandages to compress it and reduce the swelling. It looks awful and it’s hot, it’s a pain to wrap and rewrap, but it feels fine. In a couple of weeks I’ll be getting a custom compression garment I can pull on and off – much easier! I guess with the number of lymph nodes that I had removed, it was unrealistic for me to expect to avoid any lymphedema. As long as I stay ahead of it though, it doesn’t hurt and I’m convinced I’ll be able to do whatever I want to do. Yes!
I’m grateful to the grandmas who are providing unlimited babysitting for us and are on standby for anything. I don’t know what I’d do without them. I’m grateful to be blessed by another week feeling wonderful with my family, running the kids around, soccer, swim lessons, play dates, and removing ticks. For a couple of weeks after my surgery I’d wake up off and on all night and the first thing I’d do is ‘check’ to see that I’m still here. It seems funny now. Of course I’m sure it doesn’t happen that way!
We’re continuing to be humbled with your prayers and offers for help. Thank you everyone. We are truly blessed.
Tuesday, June 8, 2010
I’m happy to have 6 of my radiation treatments down, and only 10 left to go. I’m doing really well. I feel good, except that is, for my new companion Keith Richards.
Saturday I started having bladder issues, which was one possible side effect of the radiation. I wasn’t too concerned or bothered by it until 8 o’clock Saturday night when I started experiencing mind-boggling pain in my back on my lower right side. A Monday CT Scan confirmed kidney stones. I have one on the left that’s tiny – I’ve named it Charlie Watts and one on the right giving me lots of trouble – Keith Richards. Not everyones take the time to throw the iPod in the car and play a little Forty Licks on the way to the urologist but that’s just how I roll.
My oncologist says this is not related to the cancer or the treatment, “Just because you have cancer doesn’t mean regular things don’t happen.” The urologist sent me home with pain meds and Flomax, and hopefully after a couple of days I’ll find that little golden nugget I’m searching for in the pee strainer. Otherwise, I’ll have a procedure where they go in a retrieve it. Good Times!! I’m grateful that this can be done outpatient, as soon as I’m willing, and also that the pain is intermittent. I’m also glad that #1 and #2 are at overnight camp for another week and a half. It pains me to see them worry about me when I’m feeling ill.
I *hate* being needy and I *hate* being dependent. I’m giving the meds and kidneys two days to work this out on their own then I’m calling and scheduling a stone-ectomy. How something so small (2mm) could hurt so much amazes me!
Alan and I LAUGHED when they called yesterday afternoon to say it was kidney stones. Come ON! Seriously?? On a positive note, I had a George Jones sighting at Cracker Barrell and got to have lunch with my awesome husband in between appointments today. He’s taken my car keys until until this is over but I’m sending him back to the office tomorrow and mom is swooping in to babysit me and #3 and take me to radiation for a few days. Thanks mom!
Don’t pity me, instead think “Wow she’s lucky to be getting all of this out of the way!” I’m really looking forward to 2011 and having all of this behind me!
Wednesday, June 9, 2010
The ‘big’ kidney stone is gone! Many, many thanks to everyone who took a minute to say a quick prayer for me that this would be resolved quickly. It worked! Only four days total and I feel so fortunate based on the stories I’ve heard from friends since this started. I’m still amazed how something so small could cause so much pain.
I’m thinking of having it mounted into some jewelry but it’s only the size of a poppy seed.
I’m feeling so much better today! One more day of radiation down – almost 1/2 way there!
Tuesday, June 22, 2010
I finished my radiation treatments today and it’s a good thing because I haven’t been feeling well the last 5 days or so. I’ve had a lot of stomach cramping but I’m thankful that it comes and goes. The doc I saw yesterday could NOT see that it could be related to the radiation. My treatments were hitting my intestines – which I’ve had trouble with for a couple of weeks. I believe these are connected right? Only nausea is apparently allowed as a symptom. What an ass.
The way radiation works, it kills healthy cells as well as cancer cells, and it keeps working after the treatments end for up to a week. So, overachiever that I am, I’m planning to be back on my feet by this weekend. I’m grateful for keeping each treatment appointment – its been crazy with the radiation machine up and down in Franklin. I’m grateful that I didn’t feel worse before now, and mostly I’m grateful to be finished.
The nurses gave me a parting gift bag containing a hat and a drink coozie. A hat? Really? My radiation hasn’t affected my lustrous locks as much as the sultry southern summer but I think they should change the brim from “Vanderbilt Ingram Cancer Center” to add “This baldie brought to you by” above it. Or maybe “Cancer Patient” with an arrow pointing down.
I must confess I’m on a big ego trip. Friends at VBS yesterday told me I look GREAT and I’m very popular. Middle age has brought me to a place where I don’t care who notices me and yet now I have the popularity I dreamed of in high school.
Alan is heading to Houston with me in about two weeks. The treatment regimen there is a combo of three chemotherapy drugs and two immune stimulating drugs for five days. Then two weeks off between treatments – thankfully I can come home. The kids and puppy are sorted out for this trip. Everyone keeps asking me “What can we do?”. Right now just please keep us all in your prayers. They are working. I can feel it.
Each day is a gift.
Thursday, June 17, 2010
I prayed and prayed in Mass last weekend for a little mercy – and He has been kind to send it to me.
I have a 6 month check up with the urologist on Charlie Watts to see if he’s grown and then he could be a candidate to be blasted with shock waves to break him apart. This sounds good to me. I’m drinking tons of water and if it happens again at least I’ll know what’s going on.
By this time next week I should be finished with radiation. I’m tired and I’ve got my Immodium handy at all times, but I feel fortunate that it hasn’t been worse. I’ve had another easy week with #1 and #2 at camp. I look forward to seeing them come home tomorrow and roll their eyes at me.
Monday I picked up the compression stocking for my leg. This is to control the swelling that is exacerbated by the radiation. It’s leagues better than the wrapping I was having to do from thigh to toes – leg stocking, then 4-5 cotton rolls, then 6 ace bandages and lots of tap twice a day. The stocking feels almost like having my old leg back. It is challenging to wrestle into – like wrangling a cat into a garden hose with the water on. But worth it.
I met with my medical oncologist in Cool Springs yesterday to schedule some tests before I go down to MD Anderson – cardiac and pulmonary function. Also I will have a port placed so they can just hook me up for treatment. That is just bizarre. Compared to my lymph node surgery he described the port surgery as ‘a breeze’. We’ll see. I’m going to tell the kids it’s for accessing the Matrix so I can see what they’re up to when they think I’m not watching.
The closer I get to going to Houston the more I dread it. This is toxic stuff – you have to be admitted to the hospital for a reason. Still though, I feel like it’s the right thing to do. If I’m not lucky enough to live to be old and mean, at least my family will know I went through the most aggressive treatment to try to be there for them.
Alan and I are continually humbled by the number of people offering to take off time from work, have our kids over, go to Houston, bring meals, still sending cards, prayers, emails. We are good for now. Even if you haven’t heard from me, know I really appreciate it and I thank you all.
Thursday, July 8, 2010
We’re settled into our new home for the next week, room P1011 at MD Anderson Cancer center. The room is really big and I have a corner suite with a big window – they must’ve heard how I’m making melanoma famous in Middle Tennessee! I’ve walked the Komen walk for the last four years in Nashville in support of breast cancer research but some days I just wonder, why couldn’t I have one of the popular cancers? Where are my cool tee shirts, yogurt lids, and hundreds of millions in research funding?
Alan and I had a wonderful dinner last night then walked back to our hotel through Herrmann Park. The temperature has been in the low 80s since we arrived. So much nicer weather than we have at home – a wonderful surprise. They are backing off on two of the five drugs they were planning to administer to me for this round in order to make it easier on my digestion and skin issues – my “radiation hangover”. My port was put in on Tuesday. It looks like a lump under my skin right near my collarbone. They’ve already set up an IV line that goes into my port. It doesn’t hurt – it feels good not to have one of my arms tied down with an IV. The cafeteria here is like room service – you just order what you want, when you want, from the menu. Excellent.
I’ll be starting chemo tonight and will post tomorrow. I’ll be getting Cisplatin, Dacarbazine, Interleukin 2 and Vinblastin.
Thursday, July 1, 2010
As I write this I have my feet up on the patio enjoying the most beautiful Tennessee summer day – crystal clear blue skies, breeze rustling through the trees, and 83 degrees. And I feel well enough to sit out here and enjoy it. Today is a beautiful gift from God.
On my way down to the waiting room at Vanderbilt for a radiation treatment two weeks ago I walked slowly next to a much older gentleman. He shuffled along with his gnarled left hand wrapped in an old cotton garden glove, discussing the nearly two hour wait we’d had. He told me he’d already had five hours of chemotherapy that long day. Then out of the blue he said “This wasn’t in my plans. I’m supposed to be fishing.” It was as if my Dad had reached right out and spoken to me. It rang so true, like a church bell.
None of this was in my plans. Almost four months have passed since my diagnoses and the c-word has eaten up almost all of my time. On the calendar, I’m over halfway through. Round 3, let’s go! I need to get back to what AMY had planned for 2010!
I have been struggling all week with stomach issues, but I have some new medication from my doctor that will hopefully ease the indigestion and calm things down. He and I both believe this is still a radiation side effect issue. Side effects from radiation can last up to 5 weeks after treatment ends. If my insides look anything like the piece of beef jerky masquerading as skin on my leg, then it’s a wonder I’ve only lost 2 lbs since before the radiation. Somehow I find myself grateful for the kidney-stone induced CT scan a few weeks ago. I have some reassurance that the cancer hasn’t come back in my stomach and is causing the problems.
Tomorrow is my pulmonary function test and cardiac stress test to make sure I’m fit for biochemotherapy.
After a fun family Independence day I’ll be going under general anesthesia Tuesday the 6th to have the port placed for receiving biochemotherapy. Assuming the stomach issues don’t get worse, we’ll be ready for Houston. Either Alan or I will post once we get going in Houston to let everyone know how it’s going. Please pray that it goes well and mostly KILLS all those little unforeseen bits of cancer demon floating around inside me.
Friday, July 9, 2010
So far things are going really well. I’ve almost finished my first 24 hours of treatment. It’s a lot like having the flu – nausea, chills, lack of appetite, fever. I’ve been getting up 3x a day to walk around the floor, and also doing my silly breathing toys hourly to keep the fluid from building up too much in my lungs. I’ve slept most of the day, so I haven’t given Alan or the nurses much trouble yet. I have one fewer day of chemo ahead of me now. Thanks for all the support!
Saturday, July 10, 2010
Half way done down here! Now I KNOW I can make it! At one point Alan counted 11 bags of toxic drippings flowing through into my veins. I’m hoping since it’s Saturday they have some organized games – maybe mole hunt or shuffle board with a hair piece. I dearly miss my people – I have their picture here on the window shelf right at the end of the bed. I can’t wait to see them when I get home later this week.
We both had a great night’s sleep last night – they left us undisturbed and after I vomited up my lunch they juiced me with some anti-nausea medicine that kept me quiet the rest of the day abd all night. They know what they’re doing I guess.
Not much else to report, Alan has explored around a little but I’m confined to the floor. I’m so grateful to have him with me through yet another of challenges life has thrown our way. Me thinks I shall bathe today.
Sunday, July 11, 2010
Yesterday afternoon Alan and I went outside for a walk down to the butterfly garden. This place is practically deserted on the weekend. It was so nice to get outside for about 10 minutes until the TX heat and humidity hit us like a full frontal assault. I’m really missing my kiddos today but I’m glad they can’t see me – my face is so swollen they might not recognize me. I evoke images of Violet from Charlie and the Chocolate Factory.
The nurses and aides were in and out all night long so not much sleep last night. Right now Alan has gone down to get some breakfast and they are saying mass at the chapel so I have a few moments alone. I really couldn’t do this without my wonderful husband, one man cheering squad, behind me all the way. What a blessing he is.
One more round of drugs – I should be finished around 36 hours from now and so far they’re saying all my bloodwork looks great and I’m their star patient. They probably tell that to all the pretty girls.
Tuesday, July 13, 2010
I’ve had so much swelling in my face that I couldn’t really keep my eyes open yesterday. I’ve gained 4 lbs in fluids but now I’ve been off the chemo for over 12 hours and am feeling better.
I can’t believe it’s our last full day at camp! We stayed up until after 3 last night with the traditional camp games ‘stuff the cuff’ (every 30 min they squeeze your arm – winning score – 90 over 50 but now back to normal), ‘the itchy game’ (everywhere – need I say more?), and ‘fever frenzy’ (now back to normal). My cabin mate Woodsy Al and I are all worn out today! But it’s worth it – I got the star patient, um, camper award!
They’ve given me Neulasta to help up my white blood cells. I know this has to be good stuff just by the sheer marketing dollars spent on it by the drug company. I’ve been given the all clear by the doc to leave tomorrow and I can’t wait to come home.
I’ve been so fortunate to avoid many of the side effects this time. I know you’re thinking – seriously? But this is nasty stuff. My kidneys are OK, my platelets aren’t too bad, and I didn’t end up with any fluid in my lungs. I am so very grateful for all the prayers coming my way. I am convinced that it’s making this more bearable. I can’t wait to come home to my people.
Wednesday, July 14, 2010
Home Sweet Home!
We had a very uneventful trip home today and we are so thankful. I’m exhausted, and itchy, and a little nauseated but the swelling has gone down in my face so at least I’m recognizable now. Most especially, I did NOT vomit in my friend M’s new car on the way home from the airport. This was a blessing!
I will spend the next two weeks recuperating then we will be back for another round of biochemotherapy. It’s overwhelming to think about going back right now right at the time when I’ll probably be feeling good again. Still though, we feel called to MD Anderson and even more so now this particular doctor and his plan. We could not do this without so many wonderful and supportive friends and family members. Thank you and God Bless each one of you.
Friday, July 16, 2010
I wanted to update everyone before the weekend with the amazing news that I am doing great! Maybe it’s because of my Methodist turned Roman Catholic background, but I’ve never been one of those wear-your-religion-on-your-t-shirt types. However I KNOW in my heart that the only way any of this makes sense is because of Him. My nausea has abated some today and throughout this whole ordeal I’ve been able to consistently eat a little bit several times daily. I do have a bit of energy today (2 naps and counting so far though!) and I’m on momentary hiatus from flaming bowel-movement land. I shooed Alan off to work although I don’t know how he’s getting anything done between calls and texts to check on me.
The last two nights in Houston I developed terrible insomnia from the treatment. I’d close my eyes and just lay there, exhausted. Even the first night home Wednesday I was giddy to be in my own bed, but I barely slept. I had Ambien to take last night and it was a huge relief to get a good night’s sleep. Today I feel this side effect starting to subside a little.
Houston seems to be an allergy maelstrom for me. The last night I had a horrific headache. By the morning they wanted to keep me for a brain MRI. I blasted at them – I was getting on that plane if I had to crawl and demanded a decongestant. I’m now on antibiotics for a sinus infection. My medicine cabinet looks like the nightstand in Graceland.
On our walks by the gift shop they have a display of porcelain Chihuahuas festooned in party attire and a set of artsy rubber ducks in another window. I’m not sure if you’re supposed to collect one on each trip or bring one home to some one. Alan told me he was leaning towards getting me started on the Chihuahuas. No, I told him, I don’t want them. The only reminder I want of MD Anderson is birthdays. I want lots and lots of birthdays. Anything is possible through Him.
Monday, July 19, 2010
I wanted to let everyone know I’m feeling stronger today and definitely have more energy. I had some blood work done and it wasn’t too bad. I’ve learned any appointment where they give you a test and let you leave straight away – is a good appointment. The weekend was rough – but now it’s over. I have mom here for a couple of days to help wrangle my overly-energetic threesome and then there’s Pepper.
Our other dog died from lymphoma over the holidays and we adopted this pup a week before my Dad passed away, before I was diagnosed. She’s housetraining, chewing everything, our life is falling apart, and then she is diagnosed with mange the week before my surgery. They tell me she has the good kind. Huh? We’ve had to rely on our friends to take her to the vet for weekly shots since I couldn’t drive. Alan wanted to send her back to the rescue but I wouldn’t hear of it, I said, it sounds like a country song. “My grandpa died, my mom has cancer and they sent my puppy back”. All we need is a ramshackle pickup truck.
Poor Pepper – we haven’t had time to do anything with her but house train her and them we decided to ship her off to boot camp. When we talked to them last week they wanted to keep her an extra week to work with her. Believe it – our dog had to stay after at obedience school. I’m hoping for the best!
Here’s a great conversation starter if you need one on an elevator – tell the other destination-minded passengers that “Any floor will do” when you get on. I did this at MD Anderson as Alan and I were on one of my walks around the hospital, IV pole in tow. I think if I’d started to bark they couldn’t have looked more surprised.
I’m steeling myself for a trip to the wig shop sometime in the next week. My thoughtful oncologist in Cool Springs gently suggested that I be prepared if it does all fall out (30% chance), since this seems to happen all at once. I’ve been telling myself that it’s only HAIR, for heaven’s sake. It’s coming out at about twice the normal rate now and it suddenly doesn’t feel like JUST HAIR anymore! Fortunately I was blessed with lots to begin with. My dear friend S suggested getting two – a blond one for “Fun Mom is here!” and a red one for “Don’t mess with Mommy!”
We’re blessed with meals, childcare, and so many kind friends reaching out. It’s just overwhelming. We’ve already booked our trip back to Houston for Round 2 for a little over a week from now. Right around the time I’ll be feeling great again. All of this would be going down much better with a lovely pint or a nice glass of wine to wash it down with. Oh well, there will be plenty of time for that later.
Monday, July 26, 2010
I’ve been busy the last week with my family, and that is just how it should be. Each time I look at the blog I am shocked at the visitor count. Maybe I’ve just been underestimating what a fantabulous person I am. My OB/GYN did offer to babysit for me today. And my OB/GYN is a guy. Another possible scenario for the blog count is that some third world crime syndicate is checking to see when we’ll be out of town. Notice: we do have a ferocious dog, an alarm system, and a jujitsu trained house sitter!
Later this week we will be heading back to Houston for my second biochemotherapy treatment. I was thinking the other night how brave and awesome I am and how well I did. My arm was sore from patting myself on the back then I realized that all of those trips around the hospital, including the one outside, I made IN MY PAJAMAS. I’ve asked Alan to PLEASE keep me from roaming outdoors in my pink sock monkey pajamas this time. I don’t know if it’s my iron clad tenacity or maybe it’s the drugs (or a ferocious combination of the two) but clearly I don’t have the sense to control myself.
I’ve been feeling so good for a couple of days and have been able to eat whatever I want which has been a real joy. I had been on an easy to digest diet for six weeks or so since the radiation started affecting me. I’ve only lost a couple of pounds total since this whole misadventure began though. More and more I am completely and faithfully convinced that I will be among the minority of survivors of stage IIIC melanoma not only 5 but 10 years from now. Of course my body will never be the same after the surgery and chemo but I can’t go anytime soon, I have three children to embarrass.
At least for this trip I will know what to expect, although everyone tells me the effects of treatment are cumulative – each one is harder to bear. I did make it to the wig store and I decided to start with a head wrap that I really liked – I’m holding on to it just in case. Best of all, when I return this time I will be halfway through with my four treatments. Then there will just be follow-up PET scans.
Sunday, August 1, 2010
Hi everyone, it’s Alan. Amy’s a little too sedated to type so she asked me to update her blog.
We’re almost done with Round 2. Day one was a little rougher than last time. Amy was battling a lot of nausea throughout the night Thursday and most of Friday. She started feeling a little better Friday night and got a much better night of sleep. Saturday she was feeling better but occasionally had to fight off fever and chills. Amy’s good friend Catherine flew in to visit us Saturday afternoon. It was great seeing her and we both really appreciated her coming down here. Amy’s blood pressure and hemoglobin have both been running low, so today they decided she needed a blood transfusion. That’s going on right now as I type. I wanted to donate the blood for her but they said it would take 24 hrs to process and type my blood and they didn’t want to wait that long. Next time I’ll donate a pint once we get here so they’ll have it on hand just in case. Other than the low BP, Amy’s been dealing with a lot of heavy fatigue and swelling. They told us last time that she could potentially gain 10 lbs of fluid. She’s nowhere close to that, but what fluid she has gained seems to all go to her face. She’s so puffy and swollen around the eyes it hardly even looks like her. We’ve got about 4 more bags of chemo to go and then we’ll be finished with round 2.
Thanks for everyone’s prayers and support. We’re both blessed to have so many great friends and family members to help us through this.
P.S. – When we were here last time, Amy made a bold fashion statement by parading around MD Anderson with her IV pole and sock monkey pajamas when she went for her walks. When we arrived this time we noticed they changed the display case in front of the gift shop. It’s full of sock monkeys! Coincidence?? I don’t think so.
Monday, August 2, 2010
Sorry everyone but this just isn’t’ going to be the grins and giggles update you’re looking for. About 3 more hours and I’ll be finished with the last IV bag of chemo. They may or may not let us go home tomorrow, depending on how my white and red blood cells, platelets, blood pressure and hemoglobin are. I had two blood transfusions Sunday which went fine. My appetite has completely left me. It is hard to force myself to eat. I know I need to, but it feels more like an activitiy I used to do, and it’s irrelevant now. I’m so nauseated, I can’t get across our little room without gagging this time. I hope everyone is enjoying the last few days of vacation with their family – I desperately want to get home to mine. They’d be scared to see me though – my face is so swollen and achy. I don’t even look like myself. Thanks to everyone who is helping us through this. It is not easy.
Tuesday, August 3, 2010
The drugs are wearing off some and I know this window washer dangling ridiculously outside my room is really there even though Alan doesn’t believe me since he didn’t see him. I am feeling so much better this morning and just had my shot of Neulasta to help up the white blood cell count. We are coming home and landing around 3:45. So text one of us if you think you might be able to give us a lift to East Brentwood. Barf bag required just in case.
Wednesday, August 4, 2010
I am feeling so much better to be home! We were blessed with another uneventful trip. I know I’ve set the bar high for humor though so here’s a story from our last trip. Every day I wear a compression stocking on my right leg to prevent swelling. If I don’t, my leg swells and hurts since the lymph has nowhere to drain. When I fly I also have to wrap it in another layer of compression bandages similar to regular ace bandages. If I don’t wrap it, then a quick drop in air pressure could be dangerous. On the last trip we were backing out of the driveway and I had to run back into the house for the extra bandages. Hovering on my left leg trying not to touch anything, I wrapped it at the airport in a bathroom stall. Posterior precariously perched near the plague infested seat; I first secured the loose pant leg from even a chance of glancing at the floor. Then, swami-like I started the first of four bandages at my toes and wound up and around, bumbling with the adhesive tape to secure each one, trying not to make too many straining sounds. Tightly bound and unable to flex my knee I finessed the sausage leg back into my pants and emerged victorious. I’ve custom-ordered an acrylic “performance cube” for next year’s America’s Got Talent auditions. Next year’s hand whistler is going down in Round 1.
The treatment feels about the same now that I’m home that it did last time – the fatigue, nausea, and aches and pains being the worst of it. My face is red and peeling but the swelling is gone. I’m grateful to be home with my three kiddos and the best medicine in the world is “I LOVE YOU MOM”. I’ll be going in for some blood work tomorrow to check on the blood counts as they bottom out over the next few days and I pray that I’m feeling better next week. At least by then I’ll be driving. The next round of treatments involve a full body PET scan and brain MRI in Houston before we start, then more biochemotherapy. I’m thankful to be halfway there and blessed with so many kind and caring friends and family. It’s a beautiful day.
Monday, August 9, 2010
I am feeling much better and I can drive again! The nausea has all but left me and my blood counts are returning to normal. I think it was because I wasn’t recovered from the radiation, but last time I struggled harder and for longer after the treatment. One of my big problems was bone pain from the Neulasta shot they gave me. Lesson learned – Wikipedia is not a good source of medical information for heart attack symptoms, especially at 10 pm on a Friday night.
The insomnia has left me (only 3 days this time) and I can sleep! My face looks normal now and has stopped hurting and peeling over and over again. We are talking arid. Sahara-like. One night I put lotion on my face, brushed my teeth, and put lotion on it again. I am still struggling with fatigue and my toes are tingling (thank you chemo) and they bother me. That may be permanent, but it could always be worse. The stomach is still finicky, but of course I’ve had this problem off and on since June, so I’m used to it.
I was able to spend some quality time with my #3 yesterday, which has been rare this summer. We snuggled up and read books (he picked 16!) and looked at his baby pictures. He told us later he was glad he saw the pictures, now he knows he didn’t have tummy cheese. We all agreed we don’t know what tummy cheese is, but we don’t want it either. He meant “chubby cheeks”.
I pushed our next trip back a week, I couldn’t stand the thought of missing the first few days of school. I can’t wait to get back to our routine, crazy as it is. I am a little OCD (ok, alot) and independent – I like things done my way, and I like to do them myself.
Only two more treatments left and all of this will be over by October! Melanoma is not the kind of cancer where you reach 5, or 10 years, and your odds go back down to the same as everyone else. It’s the kind where a doctor told me months ago “Come back when you’re Stage IV and there’s lots of things we can try”.
There’s a hymn that’s been stuck in my head for a few days, “We walk by faith and not by sight” so true, so true.
Thursday, August 19, 2010
It felt great to take #1 & #2 to their first day of school today even though they were mortified to be within ten feet of me. My older son has set the lofty goal of wearing a hoodie to school every day of the year, regardless of the temperature. Though it’s admirable he’s working towards such a mighty feat, Alan and I can both think of many other aspirations for him. Ninety-plus degree soccer, guitar lessons, and back to school shopping – it is fun to be normal for awhile. Next week I’ll be heading to Houston for scans, followed by treatment number 3. I’ll be having a full body PET scan and also a brain MRI. I don’t like either one of these, but the brain MRI is worse since I’m claustrophobic. As they slide me in the coffin, the walls start to close in around me and I feel the crumbling dirt falling on my face. Last time I said my rosary and played mind games to make the time pass. It’s so difficult to be completely still for 20 minutes when you’re freaking out. This time I might just take the easy road and ask for a Valium. The info from Anderson states that I MAY also receive, and it’s stated in capital letters on the paper, a RECTAL CONTRAST ENEMA. Oh goody! Something new, different and so special even the cancer center thought it was worth SHOUTING ABOUT. Only the elite and privileged of us are able to use the phrase “Hot SH**” literally. I know you envy me. Yes, please, pass the Valium.
I was reading the other day about a new Showtime series The Big C, about a middle aged mom diagnosed with stage IV melanoma and give 12-18 months to live. Fortunately we don’t have Showtime so I won’t be tempted to watch it. It can’t be any good, I found out the original name for the show was The C Word. In one article, lead actress Laura Linney discussed the American assumption that we will all grow old before we leave this earth. Growing old really is a privilege – she is on the mark with that one.
I’m feeling great and I still have plenty of hair although it has thinned out quite a bit. Fortunately I started out with more than my fair share. If it’s all coming out, I’ll probably know in the next two weeks. Then I’ll be portraying the role of “cancer mom” for complete strangers. I told the kids I hope to lose my eyebrows too – it will complete the alien look I’m planning for Halloween. I hope and pray for a speedy return to complete anonymity.
Friday, August 27, 2010
While we waited and waited and waited last night for my CT scan we met some really interesting people. One man told me he was pretty sure the barium enema was illegal. There was one thought he had where I was thinking the same thing – if anyone is going to be messing with his bobo, he said, it had better be a woman.
The nurse’s name was Fred and it looked like he’d had a long day. I know his name because after he asked me to rollover and ‘relax’ and rolled back over and introduced myself. I really thought we should be on a first name basis. He smiled, I asked him to be gentle with me. I’ll spare you the details. I’ve had alot worse happen to me this year – in the big scheme of things – not a big deal. At least no permanent damage.
For whatever reason I did great with the brain MRI and it didn’t bother me at all. Because I’ve done it before? Because of the prayers? Both I think.
Our God is an awesome God – the CT scans and brain MRI are clear! I’m waiting right now to begin round 3 of biochemo and then only one more round after this and I am done. Hallelujah! Just the smell of this place makes my stomach heave.
Tuesday, August 31, 2010
I know I’ve been remiss to post the last couple of days. Yesterday my face was so swollen I could barely keep my eyes open. This is bound to be a short entry since it’s taking me about 3 times as many key strokes to get out what I mean. Lots of backspacing – I think the digitis are on holiday.
They started the 5 cocktail biochemo late Friday night – around 11 pm. By in the morning they had stopped everything except fluids because my heart was racing and my blood pressure was was too low. They had me started back up on biochemo hell though after about 8 hours. I was supposed to go home tomorrow – but now they want to have me stay an extra day until Thursday to double check blood pressure, heart rate, and also transfuse in a unit or two of blood to help my red blood cell count while they’re at all. Me, I just want to go home.
I’m not quite myself today.
Wednesday, September 1, 2010
ALL is well, we are packing up to head home in the morning.
I finished my last bag of IL2 last night and also ended up having 2 units of blood because of a low red blood cell count. Alan’s been a lifelong regular blood donor (just donated downstairs – such a good man!) but I’m embarrassed to admit I always made excuses to avoid it. Something so simple and easy to do – free cookie and a t-shirt!
I am truly grateful to those unknowns out there who took the time to donate so that I could benefit. I feel so much better today than I did yesterday. Thank you also for so many prayers, blessings, rides, babysitting, meals, and for Graymont Kennels for rescuing the grandmas from Pepper’s reign of terror. I hope to see everyone soon!
Friday, September 3, 2010
It gleamed in the gift shop display case in magnificent wonder. The fluorescent lights shimmered off its multi-carat glistening facets and I felt it start to draw me in. A gravitational pull started pulsing at the back of my brain, and greed sidled in beside it. I needed it. It was a yellow 30 carat rhinestone belt buckle the size of my hand. Suddenly I couldn’t get the idea of it out of my head and I kept telling Alan as we waited to leave the hotel, um, I mean, hospital, that I really wanted that belt buckle. And he ignored me, thankfully. After 20 years of togetherness, he is an effective manager of my dissuasion when the occasion calls for it. If you know me and you could see this Texan-made waist ornament you’d never think we were compatible. And you’d be right.
I’ve decided the time has come to learn to ride a motorcycle and I’m considering a 15 hour learn to ride class as soon as I’ve recovered from the next and LAST round of treatment. That’s right; I’m moving on up from the moped. An early 1980s gray and black Craftsman beauty, my brother and I streaked up and down the streets of Farragut in style. My mother has generously offered to title it over to me (as if the title will ever be found) as an inheritance from Dad. Speaking of Dad, after retiring from Y-12 and surviving colon cancer, Dad learned that certain cancers were allegedly linked to the work and he could be reimbursed. So he filed his claim laughing and saying if they paid it, he’d use his money to buy a Harley. And he did. His gut money Harley. And I got the moped. I’m sure he’s smiling now thinking about it.
Speaking of happy, my mother was still glowing over my clean test results when she left today. Those prayers are working baby! I’m feeling good, sitting here eating ice cream out of the carton after having a nap. The insomnia and itching I had after first two trips is much less and I’m so thankful. I’ve already booked our next round of flights to Houston for my LAST round of biochemotherapy. I’m on the downhill side and everything feels so precious. Like when my four year old sweetly proffers his hand to be held automatically, not even looking at me, or listening to today’s tales of a fourth grade something, or even laughing about the puzzling actions of an adolescent boy. It’s a glorious day to be alive!
p.s. the hair is still hanging in there – I estimate it’s about 1/3 gone, I am so blessed!
Thursday, September 9, 2010
Even though I have nothing witty or urbane to say today, I thought I’d better put up a post before my Aunt Janice worries too much and starts calling around. Today I had a follow up appointment with my surgeon, Dr. Kelley. He thinks my leg is doing great and was really surprised that I didn’t have more swelling. I do have some swelling and nerve pain – from surgery, radiation, and biochemo, but it’s limited to my upper leg and abdomen. I have even regained some feeling in the top part of the leg – it’s only about 1/3 numb now from the knee to hip. All in all, not so bad.
On our last trip to Houston we met another couple very similar in situation to us. The wife is a couple of years younger than I am, was diagnosed Stage IV and had surgery, and is on the same biochemo schedule at MD Anderson that I am. One big difference is that she is getting the five drug cocktail, and I’m only getting four. They changed mine because I wasn’t healed from the radiation when I started, and since I was doing so well, they’ve kept it the same. I feel guilty for feeling good now. When she goes home she is on IV fluids for 5 days (extended to 9 days for this time) and nearly incapacitated. Is the one drug the difference? What else is it? I don’t know but I’m so very thankful that I feel well enough to be doing what I’m doing. Fatigue is my biggest plague right now.
Today marks six months since my diagnosis, and exactly seven months since I last talked to my dad. I wish he was here so I could pick his brain a bit and laugh about how awful everything has been. I’m blessed to know now, and I didn’t then, that my kids will have a mom for Christmas. I don’t try to think up song recommendations for my funeral or wonder how Alan would manage. I’m not going anywhere. We’re making plans – for vacations and for next year, and for when I’m finished with biochemotherapy. We’ll be heading back to Houston in about a week for the LAST round of treatments. I can’t wait to get it over with. I’m so thankful for everyone that’s stuck by us this long awful year. We are truly blessed.
Sunday, September 19, 2010
This will be short since I’m updating from my phone & my eyes and face are swelling to its difficult to see! Trip was fine. I started vomiting when we got on the elevator on the hospital floor. What I wimp I am! My BP and heart rate have stayed closer to normal this time but I’m really not eating much. Mostly I sleep and pray for it to hurry up & be over with so I can go home to my family 🙂
Monday, September 27, 2010
This will probably be one of my last, if not the last post. I’m so grateful for everyone that’s followed along and prayed. I am feeling pretty good today and tomorrow can drive again. Freedom – Yes!
I had some swollen lymph nodes in January about the same time Dad was diagnosed with his brain tumor. After the diagnosis, Alan and I both would shake our fists heavenward and proclaim the unfairness of it all. Mostly though, we wondered, where was He? How could he forsake us right now? By the time I had to tell Mom about my melanoma, exactly one month after Dad died, I was a mess. As I drove from Nashville to Knoxville the rain was pouring over the Cumberland Plateau and I kept begging to God, “Where have you gone? Why have you left me? How in the world will I have the strength to get through the day without you? How will my mother make it through?” Then I drove through a wide patch of colors all around me in the middle of the road. I thought I was imagining things, and then I drove through another one. They were the ends of rainbows. I’ve never seen anything like it. There were at least four of them and suddenly it seemed so clear to me – though there was a storm, there could still be rainbows. I was not alone. I called home to tell Alan and the kids and I really think Alan was worried about my mental state.
I’ve never been an evangelistic type, nor a rainbow and unicorns type of girl, so I haven’t told anyone about this until now. I mean, rainbows, a sign from God, that’s pretty outrageous. What makes it amazing though is what happened Tuesday. The nurse declared my final bag of Interlukein-2 had run its course. Alan and I couldn’t believe the treatments were really over. The surgery, radiation, biochemotherapy, five hospital stays in six months, it has been an awful time. Minutes later, the Houston weather personality shows a picture of the skyline and announces that an enormous rainbow is arching from somewhere outside of the city (off camera) with the end of the rainbow landing right on the medical center. I know where that rainbow started; it started right on the Cumberland Plateau. I keep picturing Kermit perched on a log with his banjo, “Why are there so many songs about rainbows and what’s on the other side?” God can do amazing things, and all we have to do is ask. So what’s now for me that I’m on the other side of the rainbow? I’ve got some recovering ahead of me, and a follow-up appointment in Houston in the middle of October, and scans every 3 months but for now I’m finished with fighting cancer, and I pray that cancer is finished with me. I apologize if I forgot to thank you, or got tongue tied when you asked me about the blog. Thank you so much for everyone’s emails, calls, meals, babysitting, rides, and especially your prayers. They have made this all bearable.
A friend gave me a cross with the word “believe” across the front in the very beginning of my fight when my spirits and my faith were so low. I see it every day. A great deal of good has come of something so awful. I do believe.
Tuesday, September 21, 2010
I just FINISHED my biochemotherapy at MD Anderson!!! I am DONE!! I’m battling nausea and a fever so I’ll be here a couple of more days but I can’t wait to get home! When we got down here I asked my doc when I could get my port taken out and his reply “If you live another year then you can have it taken out then”. Thank you Mr BedSide manner! Let’s make it a date!!
The Lord has been so good to me. I am greatly humbled by his power!
Thursday, September 23, 2010
Quick update for ya from the Houston airport. It has been a long rough trip. I think I vomited up not only my toenails but some chewing gum I swallowed in 1972 in the back of our VW minibus and perhaps some infant formula circa 1969. I am thrilled to be heading home with my soul mate by my side AND I just saw two nuns check in for our flight. Definitely a good sign!
Thursday, October 21, 2010
Great checkup in Houston!! I am cancer free and I can do my follow up appointments at home. Praise the Lord!
Tuesday, January 25, 2011
Due to popular demand I am putting out a quick update for everyone. My 1/24 oncology appointment showed no sign of cancer in my brain MRI or chest/abdominal CT. I would be lying to say I’m the same physically as a year ago, but I feel great and I have no complaints. I’ve developed signs of arthritis since my last scans. I can live with that. I have three more months until my next set of scans.
It’s hard to believe one year has gone by since I found those lumps, almost a year since we lost Dad, and started a trip through hell. We are finally planning our big family vacation/celebration trip. #1 is about to turn 12 and is busy with guitar, track, junior cotillion and the school musical. Middle School math is his arch nemesis. #2 will be 10 next month and she’s our soccer star. She’s performing a dance routine in the talent show at school Friday with a couple of friends and she still likes scouts. Some days she shows attitude that would make a gang member proud.
The four year old is excited for his first season of soccer and is barely ready for kindergarten in the fall (he’s behind a little, who cares??). The little comedian is bringing BACON to share with his preschool friends tomorrow since he’s the star of the week. No standard preschool snack fare for this family. I know the looks I’m getting from the other mothers is disguised envy. Still though I wonder, what is it with males and bacon? Someone should sell Eau de Bacon as an aphrodisiac. They’d make millions.
I’m so thankful for everyone continuing to remember me in their prayers and think of us. Every day is a gift and I am so grateful to still be here for my family and to see this beautiful world. One. Year. Survivor!!!