Sunday, July 17, 2011
It’s an exciting time to have melanoma!
Welcome to Stage IV – a club you never wanted to join! That was what I said when my oncologist told us my recent Chest/Abdominal/Pelvic CT confirmed a 2 cm mass in my right hip socket. And, there was apparently another 2 cm mass in my lower back. Always witty, I thought, then I completely lost it.
Alan and I both knew we’d be headed back down this road, we knew the statistics, we’d seen melanoma kill Dad. We were just shocked it was so soon. Very few people knew that my scans from 3 mos ago weren’t clear. We didn’t hide it, but there just weren’t many people who asked. At that time they found the spot in my hip socket, but we were told it COULD be something other than cancer – and I clung to that. I wonder what it is about us, that gives us HOPE in spite of the obvious. Whatever it is, though, I’m thankful.
We made two major, difficult decisions since the first of the year. One was to move our three kids to a Catholic school across town – I feel so strongly called for them to be there, it’s hard to describe. I know they’ll be taken care of, nurtured, and given a good education, if I am around or not.
The other was to try to sell the house we love with Alan’s ultimate man-cave and kind, caring neighbors, in order to find a house close to the new school. Close enough for Alan to take the kids and for us all to spend much less time in the car. We found a ranch just big enough, 3 miles from the school. Things were going great!
And then the spot grew.
New school, new house, still cleaning/showing the current house, moving (ha, ha, how will we manage that??), new cancer diagnosis – overwhelmed? Nah!
Today’s homily (that’s sermon for you non-Catholics) was “Why God lets bad things happen”. I thought, well good, because I really need some answers here. I was enjoying being a living example of God’s miraculous healing, inspiring everyone, and just enjoying taking care of my family. Fr. Titus said that God lets bad things happen in order to let good things bloom. That from one bad thing, so many good things can come. I was really moved by his words, I stifled my tears. The next thing I knew Alan was glaring at me for getting into a shadow puppet fight in the pew with all 3 kids. I don’t know how that happened.
It is clear to me now – this is all your fault. Every one of you that reads this. If you’d all behaved yourselves and lived Godly, humble lives, He wouldn’t need to punish ME in order to have YOU become a better person. So SHAPE UP PEOPLE! Volunteer somewhere, go to church, forgive someone.
I feel good except for a backache and I’ve certainly had worse. You’d never know from looking at me that I’m cancer mom again. My chemo hair has finally grown back in long enough to blend in with the rest of it. Monday 7/18 – I have a full body PET scan which we pray will find the cancer hasn’t spread beyond the 2 known spots. We’re hopeful – my last week’s brain MRI was clear and all my organs appeared clear on the CT. My other appointments are TBD but hopefully we’ll know soon what the treatment plan will be. They’ve already mentioned radiation (been there!), chemo (done that!), and the new melanoma drug Yervoy.
As my oncologist said (and I preface this by saying he is actually a nice guy, it just didn’t come out right) “It’s an exciting time to have melanoma. There are so many treatment advances happening right now!” I also had someone tell my daughter a couple of weeks ago “I love your tan – you look so beautiful and healthy!”.
Alan can’t ever say I haven’t mellowed. I haven’t always been the kindest person but I didn’t slap either one of them.
Thursday, July 21, 2011
And the RESULT are IN!
Got the results of my PET scan today – which showed only ONE bone MET lighting up, NOT TWO, like they’d told us Thursday. The ONE is in my right hip, which we’ve been watching for the last 3 months, and is 2 cm. But more importantly, THERE AREN’T ANY MORE!!
THANK YOU, THANK YOU LORD!!
We have been completed awed and humbled by the response not only of our friends this go around, but of our new school family, Overbrook. The faculty and parents have been absolutely amazing in reaching out to us and offering up all kinds of help. I don’t even know how they found out so quickly. The entire congregation of the Sisters of St. Cecilia is praying for me. I’m completely overwhelmed. I told Alan we should get some better results this time now that the Sisters are praying for us – you know those prayers count more than ours!
I’ve gone from knowing approximately one person in Green Hills to having people nearby practically insist on doing our laundy, cooking, and cleaning for us. Right now we are OK, but it is a huge comfort to me to know that when we move in a few weeks there are folks that have my back. One of my big concerns is that I could be pretty well out of sorts on the moving-in part, surrounded by boxes, unable to get out of bed, and unable to find the ‘BACK TO SCHOOL’ box.
And I’ve heard again and again this week, my children will be taken care of. Above anything else of course, this is really my only concern. I fear not nearly as much for myself or for Alan, but for them. What a blessing!
Miracles are abounding for this family – both of my boys ate their full serving of spaghetti squash the other night. I’d told them it was a ‘healthy’ pasta, and Alan and I started to laugh as they cleaned their plates and I admitted to them we were so proud they like the squash. It’s hard to argue that you don’t care for something after you’ve eaten every bite.
Now I know not all the docs agree on what the scans mean, or what the treatments are, but I’m thankful to have an appointment with the head of the melanoma dept at Vandy on Monday, and with my orthopedic oncologist Tuesday. So I’m hoping that next week we’ll have a game plan, which will provide some comfort anyway and get moving on kicking this cancer’s butt.
Thank you so much everyone for your thoughtfulness and kind encouragement. Please keep those prayers coming – they are working already!
I had someone ask the other day if I’d ever taken those motorcycle riding lessons I was planning on. Although it sounded like so much fun, I woke up one day realizing what I really wanted was to just feel good enough to take care of my family and do the little things like laundry, cook dinner, go to soccer games and school musicals, and watch PJ learn all about the world around him. I have decided though that this year for my birthday (Oct) I’m definitely going to celebrate with an Elvis impersonator. I really want to hear some Hound Dog.
Wednesday, July 27, 2011
We have a plan!
The last 48 hours have been very encouraging and a teensy bit overwhelming. Alan and I met with my new oncologist at Vandy on Monday, who is head of the melanoma department. I’m so glad I pushed to see him. There are several treatment options available to me, including a new drug that he believes will be approved by the end of August. The tumor is a game changer in the field of melanoma, since it targets the cells themselves and basically turns off the mechanism that makes them grow. People have seen tumors shrink within days. It is not a cure, but some people have taken it 2 or 3 years with continued success, but not everyone is a candidate to take it. Vandy is doing genetic testing on frozen tumor cells they stored last year to determine if I have a BRAF genetic mutation that will make me eligible. Even if the drug isn’t approved, the doc feels I could get it through the Sarah Cannon Cancer center here in town which has an agreement with the drug company to give it to patients in need, but outside of the clinical trials (compassionate use). So I guess that we’re supposed to pray now that I’m a mutant.
There is also the new drug Yervoy that might work, and there is IL-2 chemotherapy – so we have some options. All of them have lovely side effects including extreme sensitivity to the sun, development of warts and other skin problems, and much more serious stuff, so I told him my goal was to LIVE, not to join the undead. He guaranteed “This stuff will not turn you into a troll” however I may be at a point where I really cannot be out in the sun without being covered from head to toe. The perfect solution for this seems to be a burqua, no disrepect intended to anyone. I’m a medium if you have one I can borrow.
He told me I’m not a candidate for any of their clinical trials since I didn’t have ‘enough’ tumor/tumors. Well THANK YOU GOD FOR THAT! And he still wanted to see if surgery is possible first.
Tuesday we met with the orthopedic oncologist to get a definite opinion on whether the tumor is able to be biopsied or if surgery is even possible. Long story short, at one point the doc had to put his hand on my shoulder and tell me to calm down (I was shouting – I got a little anxious at the phrase “drill a big hole in your pelvis and fill it with cement”) and by the time we left I was scheduled for surgery August 9th. It’s major surgery – they will remove all the muscles on my right back side, drill a hole in the back of my pelvis, scoop out the tumor with a melon baller, fill it in with bone cement (not even sure what that is) and then re-attach everything. That is going to sting. Hospital stay 2-3 days, and a month or so on crutches but I should be able to walk, drive, and do the Thriller dance again, but never as well as Alan.
It takes alot to rattle Alan. I’ve talked him into projects that surprised even me. I talked him into one more dip in the gene pool long after he’d given up on coaxing me into a bigger family. I talked him into helping me change out a part on the sewage pump in our basement, although he still hasn’t forgiven me for getting poo in his ear. But now I have a major surgery in less than 2 weeks and we are moving the same week. He is looking a little concerned.
I truly believe I must get this tumor out, as soon as possible. Delaying a couple of weeks will only allow it to spread. Delaying the move seems impossible – how do you clean and show a house while recuperating from surgery? We could tell potential buyers “Please just ignore the burqua-clad troll moaning in the back room”!
I feel like I’m at the bottom of a huge mountain again, with an enormous climb ahead of me. I can do it again – with God’s help. I’m so thankful for the prayers – we have found two confident, competent, caring doctors who believe they can help me. There is no cure, but things aren’t looking nearly as grim as two weeks ago. We have hope and the reassuring feeling of a plan. We have so many friends new and old that are blessing us with their prayers and their help.
And no one has poo ears.
Wednesday, August 3, 2011
I usually make a guy buy me dinner first!
You’d never know what was going on from looking at me. Really I feel fine and other than a little ache, I’m able to do whatever I want to do. I feel fortunate. Right now I’m enjoying SITTING, something I guess I’ve taken for granted for years. My friend Betsy told me this surgery will make me even more of a hard-a**. I’m still shocked she said it. I never thought I’d hear her use such language! One week from now the surgery will be over. Cancer is truly a pain in the a**.
I had my pre-op checkup today, where they take blood, size me up, review my lengthy medical resume, and tell me I’m fit for cutting. I was told it is expected to be about a 4 hour surgery, 3 day stay, rough recovery (worse than last year – YAY!) So I waited for the big finale when they always ask “Do you have any more questions?” and I was ready with my comic relief “Can you add to my chart – “Please tell Dr Schwartz to put my right cheek back where he found it when he’s done?”” bah-dum-dum! The nurse just started at me. Fortunately my good friend Maura has given me a perfect set up for Tuesday, which hopefully will go over better. The punch line goes “I usually make a guy buy me dinner first”. bah dum dum! My sense of humor is my coping mechanism. I have to laugh, I must have my friends and family laugh, or else I would just pull the covers up over my head and stay in bed. My dad had a knack for cracking the funniest, most inappropriate jokes at the best times.
So in the midst of all this we’ve been packing up our worldly junk and getting ready to move. Yesterday my beloved husband rescheduled our move to try to ensure it happens WHILE I’M IN THE HOSPITAL! He’s afraid my (slight) controlling personality will interfere with my recovery should there be moving activities going on nearby me. I’m sure this will make everything a breeze. Although we are both planners I have to say we have lots of things spinning out of control and fortunately we have wonderful friends and family who are jumping in to pick up the pieces. They watch our kids and drop what they’re doing to pack or help us move boxes. We are more blessed than we deserve. We continued to be humbled and awed by our new school family at Overbrook. These folks don’t even KNOW us and they’re signing up to bring us meals and wanting to help tote the kids around. We are completely and utterly amazed. Still though I have to say, I’d rather be doing all of this myself and helping somebody else out instead. I was planning to volunteer to get to know people – not have them volunteering for me. I will say this though, if this is all part of God’s plan, I have some questions I’d really like answered when I see Him one day.
Monday, August 8, 2011
Oh MY! Isn’t that INTERESTING!
Dr. Sosman sat puzzling over my test results this afternoon as Alan & I sat fidgeting. “Well, isn’t that interesting… HMMM….” Well the good news is that I am a candidate for vemurafenib (Zelboraf) if I need it – I do have the BRAF-positive genetic mutation but it is called BRAF V600D, not V600E like they were looking for. My particular type is the FIRST one he’s seen of the 350 that Vandy has tested. He told me I’m very special! (I could’ve told him that – my mother always said it was true!). Being a rare type would make me of NO INTEREST to a pharmaceutical company for a drug trial. So, the timing of the drug coming out (weeks) is wonderful. THOSE PRAYERS ARE WORKING FRIENDS!!
We are headed to Vandy in the morning for the 4 hr surgery, then a three day hospital stay. I wish there was another choice, we will get through it. Alan claims to have the move well in hand and many burly and otherwise friends are helping him out. I used to say I ‘did’ the cancer for the free dinners, but free moving help – what a bounty! Seriously though, we are so blessed that our friends and family have our back. We can’t wait to do something for all of YOU!
After surgery I will go through some radiation, then in October, scans to see if any of the mutants have escaped the scalpel or popped up elsewhere. I wish my body would quit making these cancer cells – it’s going to kill us both! Alan will post some updates tomorrow to let everyone know how it’s going, however I cannot promise the level of wit and mirth that you’re accustomed to. He’s better live.
I am not afraid for He is always with those who BELIEVE
Tuesday, August 9, 2011
Update on Amy
Hey everyone, it’s Alan. Sorry for the delay in getting this update posted. Amy made it through the surgery just fine. Her doctor said everything went very well. She was in surgery for about 2 1/2 hours, In addition to patching her pelvis with bone cement, they put in a plate and some screws to strengthen it. Feel free to insert your own joke here about her getting screwed today (my apologies to all the nice nuns at Overbrook), Amy’s mom and I are with her now. She’s been in the room here for about 30 minutes or so. She’s still groggy and fighting off some nausea from the anesthesia, but all in all she’s doing great. Amy and I have been amazed and humbled by all the people praying for her. Thank you all so very much for your support.
Thursday, August 11, 2011
Today I’m feeling much better! I’ve just gotten back from tour of the halls on my walker. I have to admit, it’s a little painful. i have bone cement, a plate, and several screws in my pelvis. they are talking about letting me go today but Mom & Alan both think I need to stay to make the move easier on them. I can’t wait to get out of here. At least at home I won’t be forgotten during dinner time. My people won’t forget to give me my pain meds either. Don’t even get me started on the food. Bleck! I just can’t wait for you to see my potty chair. It needs some racing stripes but other than that ~ awesome!
I’ve had several amazing friends come by to visit, to pray with us, and to even wipe my head while i heave. Cancer sucks much less with friends!
Friday, August 12, 2011
Home Sweet Home
I’ve been home for over 24 hours now and I can’t help but think what a blessing it is that we found this 1 story house just in time. I can walk on my walker all the way down to each kids room – no stairs at all! Some very generous friends came yesterday afternoon and completely unpacked our kitchen, set up the kids’ rooms, and also unloaded ALL the boxes out of the pod. We are just overwhelmed by their generosity. Praise the Lord for putting such generous people in our life.
We’ve given the grandmothers a couple of days off – well deserved after last week wrangling the kids and with me in the hospital. Still waiting on St. Joseph to come through with an offer though…
The kids are great helpers too although they have been fighting over my physical therapy toys: the walker, the ‘Grabber’, and the “foot catcher” which really looks more like an invisible dog. You should see me on my walker, armed with the Grabber – I’m invincible.
Tuesday, August 16, 2011
Like wrestling an alligator into a turtleneck
Our move into our new house was AMAZING and filled with so many blessings, too numerous to count. I worry that I won’t remember everyone that’s helping us out, that they’ll think an email Thank You is impolite, or that I’ll forget someone.
The Lord blessed us with friends and neighbors to come and clean our house in Brentwood, hands to help us move all the remaining stuff, of which we have too much, souls to unpack our kitchen, bathrooms, and kid’s rooms to get us functioning right away on Saturday, food to feed them, and even friends to help me in the hospital and just come to say Hello. I could never imagined anything like it. Thank you Lord and Thank You friends! Finally we are starting to settle in and find things so the daily frustrations are lessened somewhat. Although I did ask Alan the other night, “Where IS my car?”
I continue to do a little better every day. I am getting around pretty well on the walker, although it’s slower than I would like. For a year I’ve worn a compression stocking on my right leg to reduce the swelling due to the lymph nodes removed. Since I still can’t manage this with my healing hip, Alan has willingly taken up this duty. His description of this new daily routine “It’s like wrestling an alligator into a turtleneck”. And somehow the daily routine continues around me – kids finishing their summer work, getting ready for the first day, soccer games, and Alan went back to work today after his little ‘vacation’.
I pray daily that this surgery was not a waste, that this awful cancer doesn’t just pop up somewhere else, however now I know it is all in God’s hands. I look forward to my “baby” starting kindergarten next Monday and I am so thankful to be here to see it, as well as to send off my fifth and seventh graders for a new year once again.
Tuesday, August 23, 2011
Yesterday was PJs first day of kindergarten. He gave us a rundown of his day and then announced after a few moments of silence “LOVE IT!” He was only there an hour and a half and somehow he still found time to sneak up and scare girls on the playground. He told us “apparently there is no rule against that”. Caroline and Topher love their new school too and everyday they tell us they’ve had a great day, and talk about how nice all the kids are. I’m so relieved they are happy.
Also yesterday, I had my post-surgery follow-up and had my stitches removed. The visit involved a very hunky young nurse with his hands on my, um, stitches. Fortunately I couldn’t see the look on Alan’s face. The resident told me she’d seen a lot of patients two weeks after similar surgeries and she’d never seen anyone doing as well as I’m doing. She told me I can drive. Alan’s instructions, with a firm finger wag, included “Don’t let her overdo it!” His response, “Easier said than done!” I’m getting around on one crutch and I can drive a little. I’m especially thankful for my brother Tony coming out to help us around the house this weekend, for Mom for babysitting/driving/errand running for us, and for the kind souls who are bringing us dinner. All of this is a huge help and allows me much more time to rest and recuperate. I’ll be meeting with my radiation oncologist soon and start radiation in the next few weeks in the area of the tumor to attempt to kill any remaining little evil cancer cells lurking there. Then we will see what’s next.
After our new house “found us” and we put it under contract, we amped up our prayers for a sale on our Brentwood house and even enlisted St. Joseph’s help. One morning about a month ago I was watering my plants and my mind was totally free. Seemingly out of nowhere, almost like I’d heard it, the thought was in my mind “September” – clear as a bell. Now I know this sounds crazy, but I knew exactly what “September” was in reference to – the house. I didn’t tell anyone. I hope He can forgive me, I continued to fret and worry and not trust Him. This weekend we got a great offer – they wanted a response by Aug 22nd(Mother and Dad’s wedding anniversary) and closing on Sept 15th (Dad’s birthday). Don’t even try to tell me that’s a coincidence. Thank you God –thank you St. Joseph – thanks Dad!
Thank you so much for your continued prayers – I know now I cannot survive this on my own – anything is possible through God.
Wednesday, August 31, 2011
It’s all relative
We had a great weekend – Alan and Caroline were in Asheville for a tournament, (2nd place – great job girls!) and I stayed at the house with the boys and two of my wonderful high school gal pals kept me company. Thanks ladies!
Today I met with the radiation oncologist and his team. It went very well. First we met with the resident “Dr. Josh” and I thought to myself – really? How can I possibly take a “Dr. Josh” seriously? But he was the most familiar with my case from studying the files, than any doctor I’ve ever met. I love that. I’ve met some people in the medical profession that would do better to stay behind a microscope. We met with Dr. Tenenholz, and he told me he was “shocked” to see how well I’m doing 3 weeks after surgery. I was shocked too, but it was when I stepped on the scale and hadn’t gained five pounds from all the wonderful meals people are spoiling us with. I am off the crutches and the pain is tolerable. Thank you God!
I go tomorrow morning for a scan they will use to determine the exact area for treatment. Then they’ll start me sometime next week – I will go twice a day, 6 hours apart, for 2-3 weeks. It’s risky. I’ve already had radiation in this area and this is pushing or exceeding the lifetime maximum exposure for this area. My pelvis could disintegrate from the treatment. Or the little cancerous leftover bits could eat up my pelvis anyway. Or other yucky stuff could happen. Or any of us could die before I finish typing. My hope though, with God’s grace, is to walk out of those treatments day after day and kneel down and be thankful.
Somehow, despite my utter conviction that it would proceed, the contract on our house fell through. Alan took it much harder than I did, which surprised me since I’m pretty sure the family trophy for “Worrying” is permanently on my shelf. I guess everything is relative. Think “pelvic crumbles”. I wonder if they look like feta?
I took it easy all day and was blessed to make it to parent night last night at Overbrook school. The kids are fitting in like they’ve always been there (in the words of one teacher) and coming out of their shells – so watch out! Already Topher has offered to capture and bring in a snake for the science teacher and Caroline is letting her funny side-show. They are settling in wonderfully and we couldn’t be happier. And I’m not just saying that because they served wine at parent night.
Fr. Titus told us at mass that God lets us suffer because He loves us. Because suffering brings us closer to Him. I understand, however, I really wish He’d find another way.
“Whoever wishes to come after me must deny himself,
take up his cross, and follow me.
For whoever wishes to save his life will lose it,
but whoever loses his life for my sake will find it.”
Please continue to pray with us for complete healing for me and for everyone else in need.
Thank you so much everyone for your continued prayers for me and my family. It has made all the difference.
Thursday, September 8, 2011
Ask and you shall receive – a snake!
I started my twice a day radiation yesterday and I have to say it isn’t as much fun as I thought it would be. I’m focused on being finished two weeks from now. They are being as careful as they can to try to focus in on the treatment area but only time will tell if I end up with bone loss in my pelvis or organ damage from the second set of treatments to the same area. If the pelvis is damaged then the plate and screws won’t hold. Do me a favor please – if a titanium screw falls out of my pant leg and clinks on the ground as I walk past, let’s just both pretend it didn’t happen. And do not, I repeat – do not, pick it up.
During last year’s radiation I coincidentally (so they INSISTED) had my first kidney stone and it decided to painfully saunter its way out – I named it Keith Richards. A smaller one is still around (Charlie Watts) so I’m hopeful that by staying ahead of it with lots of water, I can avoid a similar painful, coincidental, scenario.
We are the foster parents of a corn snake. Well we think it’s a corn snake – I don’t see any rattle. It’s a cute little baby and Topher will be proudly delivering it to his science teacher in the morning. A friend offered it to us after catching it and reading last week’s blog. And then she just happened to be running errands with it in the car and brought it by. That’s right, I said running errands with the snake. Like I said, he is a cute little thing although I won’t be taking him to the store. We will NOT be buying baby mice to feed it, and I’ve told Topher if the teacher doesn’t want it, he can set it free. I’m just not willing to put frozen mice babies in the freezer next to our newly-vegetarian overly-dramatic daughter’s soy chicken strips.
I have a PET scan in three weeks to see what’s going on in the depths of me (hopefully, praying for NOTHING) and then we’ll see what’s next. In the meantime I’m just trying to enjoy every day.
Tuesday, September 13, 2011
The Lord has found an unlikely advocate in me and this is one of those times the very private person I’ve always been shirks away from telling a tale of the Holy Spirit. Here we go anyway, since He has made Himself so obvious to me these last 24 hours, I will share.
After 3 days last week of twice daily radiation, I was exhausted. I hadn’t felt well much of the weekend. We went to mass Sunday night for the first time at Christ the King church – the closest to our new house. The priest called for anyone ill or undergoing surgery to come forward to be anointed with holy oil and receive a special blessing. However I let my self-consciousness seize me, and I stayed glued to the pew while the kids looked my way with questioning eyebrows. Later, I wished I’d gone up. Sunday night I realized how much I’d let my FEAR DEMON invade me. I made a point Monday morning during my rosary, and in quiet parts of my day, to ask God to please put me back in that place of trust I was in a couple of weeks ago. I need to be in a place of trust and thankfulness to bring me strength. Around that same time Father O’Neill from Overbrook called and wanted to come over and anoint me. We prayed with my family for me to have trust in the Lord, and for him to give me patience and heal me. Also Monday night a new friend went out of her way on a busy school night to drop off a prayer bracelet made at St. Edward’s for me.
I am so very thankful that these two people opened their hearts to let the Holy Spirit work through them. I am feeling so much better on the inside; my faith is strong today! The worst of the rest is that I’m tired but the hip is feeling better every day. I must be limping more than I thought; the golf cart chauffeurs in the Vandy South Garage have started insisting to give me a ride to the elevator. If I wasn’t so stubborn and determined that I need a little exercise I could use the cancer center valet and save them the trouble. Hopefully they won’t start flagging me down.
I walked the Susan Komen Race for the Cure for several years before last year’s surgery. My mom is a survivor and I thought it was the least I could do although I never once asked anyone for a donation. This time though, I’m asking you for more. We’d love it if you could join Team Willett October 8th at 9 am for the first annual Music City Miles for Melanoma Walk. The Melanoma Research Foundation isn’t a huge group like Susan Komen or the American Cancer Society – but they are the largest nationwide group to support patients, spread the word, and raise money for treatments and a cure. Through a friend of a friend, the president of the MRF found and called Alan to see how I was doing after my surgery.
Here’s the verse that came with my new prayer bracelet:
“Don’t worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God” Philippians 4:6
And lest I forget, I hear the jury is still out on whether the 7th grade keeps the snake or not, however he is in good hands at the science teacher’s house.
Thursday, September 15, 2011
Radiation update and Miles for Melanoma Details
I had a check up with Dr. Josh today who said “I just love it when my patients are doing great!”. Other than fatigue, I haven’t had any radiation side effects. In other words Vandy is doing a great job of targeting just the bone, and not hitting my intestines. Last year I had a lot of tummy trouble due to the radiation hitting my bowels and according to the doc if they are radiated again “They won’t like it”.I asked him what “They won’t like it” means. “They don’t like it” = Bowel Disintegration = pooping thru a hole in my stomach into a bag. For the record, I’d prefer not to do that. So I’m very happy that SO FAR it APPEARS things are going great. All the prayers are working! I have five days and ten treatments left. I’m counting them down.
I am absolutely astounded by the folks who’ve donated and who’ve stepped up (literally) to walk with us – we’ve raised almost $1000 in TWO DAYS! Thank you so much! I know I won’t be able to finish the race, but I got pretty fired up when I saw how the sign-ups were going so I just jumped in head first. I’ve had several suggestions for how I’ll be able to complete the race when my walking is finished but my 5K isn’t:
1) Throne carried by hunky college guys – Cleopatra-style
2) Padded wagon
3) Electric Target shopping cart (I have recent experience here – I was accused of drunk driving. They are harder to steer than you think!)
4) Regular Shopping cart (least favorite)
5) Parade float
I favor the float idea because 1) I’ve always wanted to wear a crown 2) I’m less likely to spill my Bloody Mary and 3) I always think my ideas are the best.
I’m sure it will be an even bigger event next time and I’m just brimming over with ideas for next year’s walk
Palest of the Pale contest
Crowning of the Melanoma Queen (hint, hint)
Guess the SPF raffle
Friday, September 23, 2011
Why Not Me for a miracle?
I told someone the other day; I wish we could get a break from life’s little challenges while these cancer treatments are underway. Examples: flat tire, car accident (Score: Alan:1, Deer: 0), kids sent home sick from school (2 so far), or, my favorite, kid calling from school to say he’s tripped and knocked his jaw and wired his jaw shut. Yes, I’ll say it again – bent his braces and wired his own jaw shut. Once I found out he wasn’t hurt, I found endless opportunities for comedic fodder. I’m sure Topher would’ve laughed along if he could. I was hilarious.
I’d finished my radiation yesterday though and I’m thankful it wasn’t bad. It was a low dose since I’d had it before, and I’m praying it did the trick. I have a PET scan next week with results Oct 4th and I’m hoping and praying they find *NOTHING* of course – I’ll let you know!
Being in radiation oncology twice a day put me in full viewing of the cancer parade as it marches and wheels through. Some of these folks are in bad shape. Radiation is used sometimes to alleviate pain, even when patients are terminal. Yesterday I overheard a woman in a wheelchair telling the story of her horrible week. Gina Jailler’s 14-year-old daughter was at Vandy recuperating from a terrible car accident in which her ex-husband (the girls’ father) was killed. I’d heard about her a few days earlier from our church prayer chain so I marched over and introduced myself. I told her we’d been praying for her. Her breast cancer has metastasized to her spine and she told me that she’s praying for a miracle to save her, so she can be there for her daughter. “It’s just so unfair. I can’t leave her here. You hear about miracles happening all the time with cancer patients so I figure, Why Not Me? Why not me?” She has had so many people reach out to her in prayer, she told me she thinks her plight has spread world-wide. I don’t know why she was put in my path yesterday but suddenly my problems seemed minor. She was amazing – in spite of it all, this woman still had HOPE. If I did nothing else worthwhile yesterday, I provided this poor soul a little comfort. I really hope Gina Jailler gets her miracle. It’s funny the people you’ll meet waiting for radiation on cancer street.
Seventh grade snake update: He is enjoying his freedom somewhere on the grounds of Overbrook School. Apparently he was starting to reek in his plastic container, so perhaps the stench earned him his liberty.
Tuesday, October 4, 2011
NED Again! Praise GOD!
We just received the results from last week’s PET scan. NED – NO EVIDENCE OF DISEASE = NO VISIBLE CANCER!!! PRAISE GOD! . No one uses the word “Remission” anymore – if the cancer is still there, it is teensy weensy, undetectable, not harming me. HOORAY!
We were absolutely trying to prepare ourselves for different results – what a wonderful surprise! I try so hard to keep everything in perspective. Our washer erupted Sunday and as Alan and I mopped up the floor he said “Oh great, this is the last thing we needed!” and I tempered it with “… well honey… not really the LAST thing”.
I am so desperately thankful that God has given me a clean scan for now and I am trying to enjoy each day on its own merit and figure out what God wants for me to be doing. I guess Sunday He wanted us cleaning the floors.
I try not focus on what could have been or worry about what might be. I will have no chemo, no drugs, just follow-up scans in 3 months. My oncologist told me he really doesn’t want me RUNNING the 5k this weekend. Ha, ha.
I also had a follow-up with my surgeon today who says everything looks great although he did give me some “Jane Fonda” strengthening exercises. Think 1980s between her 2nd and 3rd plastic surgeries (his words)!
Things are more back to “normal” around here. I’m looking forward to sharing our new home with friends and family and figuring out what I’m supposed to be doing with myself now that all my kiddos are in school.
We’ve had so much support for Music City Miles for Melanoma – Team Willett consists of over 40 people right now, and we’ve raised over FOUR THOUSAND DOLLARS! There’s still time to join us this Saturday if you’re available – 9 am! And it’s only 1 mile for walkers. I might make it after all.
Hopefully you won’t be hearing from me soon. No news is good news.
Tuesday, January 17, 2012
Cancer is a roller coaster
Cancer is a roller coaster. The highs are thrillingly high, the lows knock the breath out of you, and sometimes you are nauseous.
As time for my 3 month oncology checkups loomed, I got very, very anxious. My PET scan showed two suspicious areas – one vital organ and one “optional” body part. It scared the PUDDING out of us! My peace left me as I lay in bed at night listening to my heart beat, driving its way through my chest wall. Every tiny ache and pain amplified to a thundering, suspicious roar. I found a way out of the abyss by turning my attention away from myself, and onto others. It occurred to me that maybe that’s all God really wants from us, to do for one another first. I’ve told my kids for years that so many choices in life boil down to the Golden Rule – “Do unto others as you would have them do unto you” however I think we can raise the bar on this. The theme for our school this year is “Love one another as I have loved you”. It sounds so simple, but can be so difficult.
We ventured through follow-up tests and appointments and today my oncologist told us to “Go out and CELEBRATE!” No tumors, no evidence of cancer, and come back in three months. We are full of joy and thankful to God that He has heard our prayers. Also though, I am reflective.
We all live with a death sentence, unknown in its length. It’s hard to explain, but cancer gave this awareness to me, like a bequest in its wake. Cancer has freed me in a way I never expected. The choices I make are amplified and I attempt to embrace each day for the gift it is, and be thankful. I pray that my actions and my choices are for the right reasons and if I’m standing on that path alone, it matters not to me.
I’m released from my regrets and from the dreams that seemed so important when I was younger. My most heartfelt desire is to live to take care of my children. I feel GREAT and I am so thankful for everyone that continues to pray for me. As 2012 bloomed upon our family during a wonderful ski vacation to Colorado, I didn’t dare think that once again I would have great test results and a 3 month hall pass from oncology. We are blessed!
I’ll leave you with my favorite poem.
Peace be with you all.
“The Road Not Taken” by Robert Frost.
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.