Constant

Monday, I was sick, my same normal sick. No biggie, but tiring. Tuesday, I tried to make up for not doing anything the day before, and things were tough. Tried to straighten the house & move furniture for carpet cleaning, traffic to & from school was crazy, Einie really needed a bath, and my girl's first extraction at the dentist was the "most painful thing" she's ever felt...ever. To top it off, I was on the phone four or five times, trying to get my scans coordinated between the doctor's office & the girl at Radiology, and trying to get a prescription refilled since I was down to my last pill. There I was, sounding strong but feeling weak, still in my pajamas at 1:30 in the afternoon with 45 minutes to go before school let out. I got into the shower & heard the phone ringing again. There was a message from Nancy in Dr. G's office, saying that our new health insurance was two weeks behind in their pre-authorizations for scans, so it was doubtful I would be going ahead with the PET next Monday as planned. My heart sank. As much as I hate these scans, I hate not knowing what's inside even more, and pushing them further down the line just makes it worse. I wondered how this news would mess up the holidays, feeling certain it would. Sad, sad, sad. Went to bed with a prayer that things would be better in the morning.

And they were, of course. Early, 8 AM early, Nancy called again to ask if I had talked to Radiology about a tentative schedule for the scan & I said, yes, somewhat warily. She said, "Good because the pre-auth went through and we're good to go on Monday." I couldn't believe it...had I heard her correctly? I think we both said, "Awesome!", at the same time. I hung up the phone and cried. Another miracle. They never cease to amaze me. They always make me cry. God's love is constant, even when I doubt. 

I am extremely grateful for the constant prayers for me & my health & my family. I am humbled by the special fast my sweet ward family will be offering in my behalf this Sunday, along with members of my family & friends. Miracles are already coming. I cannot say thank you enough...but I'll keep trying...

(The best part of Tuesday, 11/12/13, was the anniversary of these two cute "kids" that I love dearly!)

No Celebrations Yet

It seems like I get to a point where maybe I can relax a bit with this danged cancer...and it reminds me that it will probably never happen (notice how that sentence used words like "seems like" & "maybe" & "probably" - just trying to stay real here). My appointment yesterday was supposed to be a celebration of the final IPI infusion, but this time around there was no "feel good" certificate or comfy handmade blanket at the end, mostly because it just is not the end. IPI is done, for now, but what else is to come is already being considered. 

A few weeks ago, I discovered a big ugly bruise on the inside of my left knee. No idea where it came from or how it got there, which is typical for someone on blood thinners, but as I touched this bruise, I realized that there was a teeny lump in the center of it. I wanted to believe it was a blood clot - maybe? - but I've felt enough melanoma lumps to see red flags now, no matter how small they are. I even asked Dr. Avizonas to feel it & assess it at my radiation follow-up appt last week. She could see the bruise, though it had faded a bit, and thought it was just blood from the impact of being whacked there. Of course, she said to keep an eye on it, but didn't seem too concerned, which made me relax too...at least until Tuesday night, when I started to wonder & worry again, knowing that I had discovered it for a reason & I'd have to bring it to Dr. G's attention the next morning.

Arrived at Huntsman super early, got my labs done & my port accessed for the infusion, found out I had gained a couple more pounds (Halloween candy to blame?), and got settled in the exam room to wait for nurse Carolyn. First thing she always asks is, "do you have any new concerns or complaints today?" Darn. First thing. It was inevitable. I told her about the bruise and showed her my leg. I honestly have not looked at the thing for a couple of days, so I was kind of surprised that the bruise had faded to almost nothing. But just in case I thought I wouldn't be able to find it, there was a yellowish circle around the pea-sized lump. Carolyn felt it, squeezed it (yeah, this little guy hurt), and got that worried look on her face that I've (unfortunately) seen more than once. "Do you remember hitting your knee?" she asked, and I said, no, I just noticed the big bruise one day after showering. "We'd better get this checked out then," she said. She went on to say that if I really had hit it hard on something, she wouldn't be as concerned because it would explain the bruise & the lump. But, since I couldn't recall exactly how it got there, the lump may have caused the bruise. That's something a cancerous lump would do. Of course, it would, the little devil. Weird.

The shrinking tumors in my back & groin were felt and then dismissed in light of this newest threat. Suddenly, they had taken the back seat. The techs from the lab were called to do a needle biopsy there in the exam room and arrived within minutes - one of the many perks of an early morning appt. three "passes", as they call the needle passing in & out of the lump, were taken and yes, it hurt! I admitted it to the senior tech and she said it was because the lump was so small, she had to pinch it between her fingers to do the passes. Lovely. Finally, they had enough "stuff" (tissue? blood?) to test, again done right there beside me. Whispered words I didn't understand, and then the announcement that it looked "suspicious" but required further testing. I knew. It was melanoma again.

Nurses Carolyn & Karen came back into the room to talk strategy. Dr. G was in a meeting, but they were keeping in contact with him. My blood tests had also come back and the notorious platelet & white blood cell counts were low again, even lower than they were at my last appt. Protein and albumin were also low, though I had had a protein drink for breakfast. So weird. What to do about that was still the burning question, but for sure, Dr. G wanted me to finish the IPI infusions & then we could figure something out. Because of the new tumor, my upcoming CT scan needed to be changed to a full-body PET scan so that it would include images of my legs. My wild imagination now believes there are tumors everywhere - legs, arms, brain - every aunt, uncle, & second cousin cancer cell coming out to party & invade. Horrors. But, I know it has to be done because after finding this little guy, I'm seriously NOT going to go looking anywhere else, no matter how many bruises decide to pop up. Not going to touch them, no way. If they're there, the scan will catch them...and everything else I don't want to know about right now.

I went to the infusion center pretty shaky from the news & the biopsy and discovered the only "chair" they had available was a BED. As if I didn't already feel like the typical cancer patient, which I usually don't, by the way. But it was kind of nice & I quickly recognized it as a mixed blessing. I could sit/lay more comfortably, I could turn on my iPad & play the Pandora shuffle (I love that I can listen to Keith Urban, Nat King Cole (Christmas Radio), Meryl Streep & "Dancing Queen", and Britt Nicole one after the other) without my head phones. The time went by fast...another blessing.

So again, I wait: for the exact date & time of the PET scan, for the formal results of the biopsy, and for an appointment with a hematologist who can, hopefully, figure out my blood counts. And then, what do we do with the lump? If he's the only one to come to the battle, I think out-patient surgery is on the horizon. If he's only one of the offenders, another course of action will be planned. It will be okay. It will all work out. We'll keep that celebration on the back burner for now.

Until the next update, these little people make me smile, day in & day out. I know my Heavenly Father blessed me with them specifically to help me through these rough, teary days. I wake up the next morning and know I can go on because of them. Enjoy!

Getting Better

I've spent two glorious (long) weekends with family this month. Last week was to celebrate Fall Break for the school kids; the week before was to celebrate the college break for a few days. We had so much fun doing autumn/Halloween outings. We did the Gardner Village witch walk, the kids & their mommies did the pumpkin patch, and us bigger girls had a cute craft-making afternoon (see pumpkins below). I loved every second, which also included snuggling my darling grands. I absolutely melt when Jane sees me coming & calls out, "Grammy!", as she runs to hug me around the knees. And that little tow-headed, blue-eyed Knox can be a wild & crazy 2-yr old one second & want me to snuggle with him while he plays a golf game on my iPad the next. It's priceless.

Last Wednesday was my 3rd IPI infusion. I also visited with Dr. G and staff before heading to the Infusion Center. Carolyn measured my tumors - both are shrinking, but very slowly. It's teaching me more patience & more trust in prayer. Dr. G said blood counts are basically the same & essentially "blames" them on the Whipple. That surgery, though it saved me from a life-threatening tumor on my duodenum, has changed my physical body. Nothing will ever be as it once was. Pain, digestion issues, weight loss (and yo-yo gain from doctor appointment to doctor appointment), weird blood counts, it seems to all go back to that surgery. I also realized lately that I have "waking nightmares" where I re-visit my ER & ICU experience after surgery complications that I relate to PTSS - post traumatic stress syndrome. Ah, me oh my! BUT, I do have to add that things are better: I'm able to digest most foods pretty normally now, I have no serious side effects from the IPI this time around (only fatigue, which usually wipes me out for less than a week), and my energy level is nearly normal. Those are miracles! I have no doubts Who is in charge of my life right now.

Fourth & final infusion is November 6, and then CT scans will be done the week before Thanksgiving. I'm anxious to see the results of the scans & how much the tumors have shrunk. I know it will be good news. From there, we keep going. Dr. G mentioned that he'd like me to see a hematologist to see if there is anything we can do about my blood counts. Comparatively, that sounds pretty mild, right?

I'm blessed and doing well. Looking forward to Halloween, Thanksgiving, and Christmas...and then birthdays and new grand baby boy and on & on & on...

Get Outta Here

Last radiation treatment this morning. I can't pretend that it wasn't a little bittersweet. I had such high hopes that these tumors would be gone - or at least considerably smaller - after 20 days of being zapped full strength. But, they're still there & they're still big. The docs & I speculate that they're shrinking, but by millimeters instead of centimeters. It's disappointing. Of course, both Dr. A and Dr. G assure me that they'll continue to shrink, especially in combination with IPI. It's just hard to wait. I want to wake up one morning and wonder where those nasty buggers have gone.

Yesterday was the long, exhausting day of both radiation & IPI infusion No. 2. The weather was gray and gloomy, spitting rain and cold, and I couldn't get comfortable during the four hours I spent in the

 Infusion Center. I read my latest library book, watched an episode of "Call the Midwife" on my iPad, scrolled through Pinterest, watched the clouds scuttle over the valley, held Putter (the therapy doggy) & talked to his owner, and waited to be done. Even had to hold back the tears when I realized the patient across the way from me, stretched out the full length of the recliner & sound asleep while chemo dripped into his veins, was just a boy, probably high school age - and the woman sitting next to him, playing games on her purple iPad, was his sweet mom. My heart ached. What if that was MY high schooler? I'd much rather be the one hooked to toxins. 

I was grateful that my favorite UCS tech, Mary, was on duty this morning for my last day. She has been so sweet & kind to me, treating me with the utmost dignity, in spite of having to see me indecent from the front & the back. Always eager to hear how I was doing, how my day was going, what I had planned to keep life as normal as possible. At the last minute, I decided to make a "last day" sign & take my camera to document the day, and Mary was happy to do that for me. There's a tradition to ring a bell to celebrate finishing treatment & the office staff and techs all applauded when I rang the bell. Dr. A said to ring it loud to scare away the "cancer demons". I rang it long & loud!  I also loved how she always ended each exam by telling me to "get outta here and have a great day." Every time, the same thing. Today was no different - "get outta here..." and have a great life. That's what I pray for. That's what I hope for. That's what I'm living for.

It's Okay

This week, I will most likely finish up the 20 radiation treatments Dr. A wanted me to have. Today was No. 17. I have felt a bit of change. The tumor in my back seems to be smaller - Dr. A agreed. The tumor in my groin seems unchanged, other than the "softness" described at our last visit. I don't know what to think. I wanted it to be "abracadabra" magic and shrunk to nothing by now. I'll probably meet with Dr. A after tomorrow's treatment, so I want to ask her if one more week would make any difference or if that's even a choice. I also see Dr. G on Wednesday before my 2nd IPI infusion. I'm interested in his take on all this, too. I just want them gone. What about surgery... and why would I even consider surgery? Sometimes cancer makes me feel like I'm grasping at straws, hoping and praying the good outweighs the bad. So far, it has. But what happens when it doesn't... While waiting for my brief meeting with Dr. A last week, I read a cute article on her bulletin board. It was written by a little boy battling cancer. I didn't have anything to write on or with (after all, I was still in a hospital gown, mostly naked from the waist down; I feel so dignified during treatment--NOT!!), so I tried to remember the highlights. I love his words. "Jumping on the bed is exercise. Don't worry about anything that isn't happening today or tomorrow. Erase bad things in your past with ice cream. It's okay to throw a tantrum five minutes before you leave to go to the hospital. Scars are your badge of courage and can help you look like a pirate or a Superhero." Such wisdom from such a little boy. In spite of my "slow responder" status, I still feel that I have gained strength in the past few months. Remember in the summer when I wasn't strong enough to stand up from a sitting position without pushing myself off the chair or couch? I can now! Yesterday at church, I held my friend's baby while she filled out some sign-up sheets, and since he was a little bit fussy, I stood up to bounce him. Before I even thought about it, I was using my leg strength to stand up! Little blessings. I can climb stairs. I can put on my pants without balancing against something. I may need a nap every day from the effects of radiation, but I have energy to do other things, like fix dinner and do the dishes and clean bathrooms and vacuum with my way-too-heavy vacuum. More blessings. I don't know what will happen next. Dean's company changes insurance the first of October and I'll need all that new-found energy to "fight", I'm sure. Ugh. Not at all happy with that situation. But, I'll finish the IPI infusions scheduled for September 25, October 16, and November 6. After that is a big question mark. But, it's okay. I have the holidays to look forward to, Janessa's 17th birthday, the birth of a new baby grandSON (Aaron & Lindsey), the celebration of 3 years as a melanoma survivor, and everything after that. I'm grateful that I have great, caring doctors who are always one step ahead of this wicked disease and ready to give me those straws to grab with both hands. I also have great, caring people who surround me with love, encouragement, service, and prayers every single day. And of course, I have a great, caring, loving, kind Heavenly Father who whispers to me through his gentle Spirit that everything is for a reason and He holds me in his arms through it all. It's okay. How could it not be?

Softer

I had my 8th radiation treatment this morning. Everything seems to be going well, though I don't feel much of a change yet. Only 12 more treatments to go. The time spent on the freeway to Salt Lake every day is twice the time spent on the radiation table...

After the treatment, I met with Dr. A. She asked how I was doing & I told her there were no terrible side effects or pain - yet. Maybe there won't be any this time. She looked at both tumors and felt them. "I hope it's not my imagination," she said, "but they both feel softer to me." Softer would mean the tumors are breaking down! I like that thought. We're going with it, Dr. A & I. Gives me a lot of hope.

I definitely feel the fatigue part of radiation's effects. All I want about 3:00 is a nice, cozy nap, and I can usually get one. Summer is waning & fall will be here soon. Snuggling up with my soft blanket & warm puppy is a gift. 

I've been able to keep up with housework & cooking, but other than that, radiation & IPI infusions fill my head & schedule. It seems a pretty selfish life right now, but all in all, it's a good life. I have wonderful moments - even hours sometimes! - where I feel normal & healthy. I feel stronger than I did earlier this summer, and if I didn't have these tumors that I can feel & can't deny, I would feel healed. Hopefully there will come a day when the tumors will be gone, inside & out. That will be a miraculous day.

Gone. Lost. Forever.

Yesterday I wrote a huge, long, detailed post that I literally worked on ALL day. I was almost finished. Laid down my iPad & next thing I knew, it had been picked up and closed...without saving the post. I screamed. It was not pretty. I was already emotionally exhausted by writing & re-living all day. I knew I couldn't do it again. So, it is gone & won't be repeated. Here is my very abbreviated version:

Lagoon day with kids & grands was wonderful.

Walking all over Lagoon on a sore knee was torture. Possible blood clot.

Ultrasound shows no clot. INR is (barely) normal at 2.0.

"Mapping" for radiation involves 8 tiny black dot tattoos, 4 around each tumor. Tattoos HURT!

IPI infusion cancelled again. Still no approval from insurance. I cried.

LOVE my radiation team. Sherry handled all the insurance calls & got instant approval for treatments. I cried again.

Have had first two radiation treatments out of 20 already. I flip & flop from front to back for a total of 15 minutes per day.

Infusion rescheduled again for Wednesday. We'll see. My confidence isn't very strong right now.

Jax's blessing day today. Will be surrounded by family again. It fills me up. I'll need it for the coming week.

Done. Hurry & save. Lagoon pic below... Precious.