Blood & Guts

Quite the title to this post, huh? Right now, I feel like that's all I think & talk about...my blood and guts (I don't think I'll ever get used to doctors saying "gut" instead of stomach - weird). If you ask how I'm doing, I'll say "okay" and not much else, because, honestly, I'm getting tired of talking "medical" - and I'm sure you're all tired of hearing about it. And beware...this post is FULL of medical jargon and my next uphill climb, so if you're tired of reading about it too, stop now. Go have a cup of hot chocolate and curl up in your favorite fleece blanket and read a Christmas book. I wish I could join you. I thought I was getting a reprieve from all the cancer worries until the next scans in February, but it was not to be. Shoot.

Yesterday, I went to my first appointment with the hematologist, Dr. Shami. There are very few clinics at Huntsman where I haven't had to walk through the doors, but Clinic 2C was one of them. It's on the way to Dr. G's clinic, and Lindsey & I have often wondered why it's so busy and different from the other clinics - this one has a waiting room outside a glassed-in reception area, where the others are all open to their waiting rooms. Even the name of the clinic was mysterious: BMT/Multiple Myeloma. I soon learned all I didn't really want to know.

Regular lab work was done, multiple pages of new patient forms were filled out, a detailed visit & exam was performed by Dr. Shami's assistant, Aimee, and then I waited for the doctor. I had the good sense to bring my library book and got in several chapters before they both came back in the room. Dr. Shami was a very nice Indian(?) doctor who sat on the edge of the exam table as he talked to me about my low blood counts. I loved when he said he had already talked personally to Dr. Grossmann about me, so he felt he knew my story pretty well. We talked about my notorious Whipple surgery and how my health had been affected since then. Then he got down to the "blood & guts" of the matter. He said he felt there were probably three reasons for the low counts. One was MDS or Myelodysplastic Syndrome (you can look it up - I did - but take a deep breath first & don't automatically assume I have it). I was actually shocked and discouraged that one of the causes of MDS is radiation treatments - gee, thanks for giving me something else to kill me. A step further from MDS was AML or Acute Myeloid Leukemia (again, look it up if you really want to know, but I'll just tell you that it's not fun reading matter). The third reason was Hyposplenism, which is defined as "absent or reduced splenic function, usually due to surgical removal (spleen)", which would be part of the Whipple. As you can tell, the third reason would be the best, as far as further prognosis and treatment. So, what's next? Again, there were more options that included waiting to see if the counts would go up - not really an option, since they've continued to drop for the last six to eight lab tests. Dr. Shami's recommendation is that I have another bone marrow biopsy (remember the one I had in Feb?) that would be tested much more extensively to look at chromosomes and markers and blasts to see if it's performing the way it should and if it contains any cancer cells. Gulp. And I thought melanoma was the only beast I had to slay!

The biopsy is scheduled for Monday, Dec. 9. Dr. Shami said he would call me with the results, but that they may take up to a week to be fully analyzed. He said at that point, if the results required his expertise as a hematologist, I would come back in & receive the next plan(s) of action. If the results were within Dr. G's expertise, I would go back to him for further treatment, etc. Dr. Shami's actions could include transfusions, chemo, and stem cell work. I was kind of in shock at this point in the discussion, so more details will have to follow. What I do know is that I now have to worry about one more thing.

About Clinic 2C, BMT stands for Bone Marrow Therapy (or Treatment) and Multiple Myeloma is "cancer that starts in the plasma cells in bone marrow". The reason for the glassed-in reception area separate from the waiting room? Germs. Problems in the bone marrow account for serious infections, so many of the patients have to wear masks. Dr. Shami suggested, "If you go to church, sit quietly in the back...and don't let anyone cough on you!" When I laughed a little, he didn't. There you go.

BUT, I remain completely confident that The Lord will bless me and answer all the prayers being offered for me by small & great. I've waffled back & forth with "what if", but what always remains is the positive spirit of faith in God. He has performed so many miracles for me, and though I'm sure my allotment is exhausted by now, yet He continues. He has suffered all for me. He knows how I feel. He even knows this feeling of keeping my worries contained in these posts instead of speaking them aloud & seeing someone's face register alarm & fear. I'm okay. Really. It's Christmas time & I'm cozy and warm and bathed in the lights on my tree. Just keep praying for my blood & guts. Besides, how could you not smile at this cherubic face? (Jax at 5 months)

Grateful for God's Gifts

Monday, November 18, was the big scan day. PET scans and brain MRI - those are the big guns. They see everything in 3D & color, from the tips of my toes to the top of my head. Amazing, really, but they make me oh so nervous for all the little things that could be lurking under the skin and inside the tissues. Lindsey patiently sat in the waiting room for almost three hours while I had the PET, and then Dean arrived to sit through the next three hours, as we waited for the MRI appointment and actually had the scan. When I finally emerged, he was all alone in the waiting room (everyone else had gone home by then) and admitted that he probably fell asleep & snored. I had the worst rumbly tummy from drinking the contrast while fasting, which only added to my anxiety level. Tuesday, November 19, Lindsey and I were back at Dr. Grossmann's office for the results, knowing that Dr. G was out of the office and we would be seeing his assistant, Carolyn, and nurse Karen. Even though I had great faith in the fasting and prayers that had been offered so unselfishly by many good souls, I was nervous and imagined the worst, just to steel myself for bad news. But, God is more powerful than any tumor or any doubt. He will never leave me alone. He will never forsake me. The news was the best EVER. Nothing new on the scans. Existing tumors are shrinking - the groin tumor is half as big as on the last PET scan. The little tumor on the inside of my left knee is so small that it didn't even show "hot", which means that it is "well-behaved." Good job, you little stinker! Nothing shows up in the liver. A little spot below my collarbone that has shown up on several of my latest scans has disappeared. A tiny spot that was being watched on my right leg has disappeared. Brain is "perfect". Even my low blood counts have gone up a bit, which is very encouraging. I have an appointment with a hematologist specialist to see if we can get my blood counts as normal as possible, just in case I need to qualify for a trial down the road, but those appointments will be CAKE, comparatively-speaking. Next scans are scheduled for the middle of February! Doesn't that sound wonderful? While I was in the dressing room/waiting room for the MRI, a man came out of his dressing room to wait, too. He started to talk to me and asked, if I wanted to tell him, what I was having an MRI for. I told him I have Stage 4 melanoma. He said his sister-in-law has melanoma and that it started with a small tumor in her neck, just like mine did. She, too, had been through several surgeries, radiation, and chemo, but continued to do well. Then, he told me that she was first diagnosed "seven or eight years ago"! My heart was full! There was hope. If I can do this well and keep fighting for the next four years - and beyond - I will be eternally grateful. That is what I pray for: more and more and more time... I just cannot express my thanks enough. There are no words to tell how grateful I feel for God's gifts. He has blessed me abundantly and given me renewed hope and faith in miracles. The faith of those who pray for me, who fast for me, who think positive thoughts for me have all added to the blessings poured down on me and my family. I am filled with thanksgiving. These are the best gifts of all. Praise God. Hallelujah... Happy 9 years today, Chelsea & Rob! I love you!

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.

Update to the update

(For the whole story of yesterday's doctor visit, see post " Peace & Comfort" below. Never a dull moment around here!)

Update: Nurse Karen called a few minutes ago and told me that she's been talking to my insurance people today. They told her that the approval for the IPI infusions are coming, but they wouldn't be done in time for tomorrow's scheduled appointment. So we've changed that first infusion date & time to Thursday, August 29, at 8:30 AM. 

Okay, changes have been made on the calendar...but always in pencil, just in case...

Peace & Comfort

Today was the moment of truth regarding the blood tests and getting accepted to the PD-1 study. All week I have tried my best to eat the healthy foods that were supposed to boost platelet levels - spinach salads with berries & almonds & mozzarella cheese & mandarin oranges & sesame seed oil, smoothies with spinach & berries & pineapple chunks & yogurt, eggs in all forms like mushroom omelets & scrambled with cheese & French toast with almond butter & honey. Janessa and I also went for half-hour walks every night, and I even set out this morning for a short walk before the appointment. And last night, Dean gave me a simple, heart-felt blessing for peace and comfort. So I walked into Dr. Grossmann's office just knowing that all would be well, no matter what.

When Dr. G and Darren and nurse Karen came into the exam room, I felt relief, even before they said a word. There was something about meeting with a "stranger" last week that multiplied my disappointment and discouragement. I'm sure Dr. K is a good doctor, but he hasn't been my advocate  and defender and director for the past 2 1/2 years. When Dr. G talks to me, I feel his hope and unending support for me and I trust him completely to tell me the truth, the whole truth, and nothing but the truth, with no sugar coating. So when he said, very simply and without beating around the bush, that I still did NOT qualify for the study, there was only the slightest twinge of regret - because he immediately started to outline what we were going to do next and why we were finished with the stress of trying to qualify. It was awesome. 

He explained that the platelet & white blood cell counts were still too low, and when (out of mere curiosity) I asked him what the exact number of platelets were, he pulled up a cool graph of my blood test results for the past 15 months on the computer (since right before the big Whipple surgery in May 2012). Just before the Whipple, the platelet & white blood cell counts were pretty normal, high peaks on the left side of the graph. Immediately following the surgery, the graph line dipped clear to the bottom in nearly every test! Following the line through the past 15 months, it never lifted more than a slight peak or two, but always stayed near the bottom of the graph. My platelet count last Monday was 97,000; on Tuesday, it was 89,000 (normal is 150,000-plus). Today's test was 93,000, so it had gone up a bit (spinach & walks around the neighborhood?), but Dr. G explained that it would never - never! - be normal again, because of my surgery and as long as I have this "chronic illness", cancer. There wasn't anything I could do to make them high enough and I wasn't doing anything wrong to make them so low. Why didn't anyone ever tell me that before? He also said that because my white blood cell counts are so low and will remain low, he did not feel comfortable going ahead with standard chemo. He said my marrow (which helps the blood counts) is very "quiet" right now, although my recent bone marrow biopsy results were normal. So, to help "wake it up", he had a Plan - of course!

Since I did have a pretty good response to IPI (ipiluminab - a less toxic chemotherapy) earlier this year, especially with the tumors in my liver, Dr. G wanted to do another cycle of IPI, but he wanted to combine it with radiation on the "walnut" and "kiwi" tumors I have. The combination of the two treatments should act like a "vaccine" - as my body and immune system recognizes the "dead tumor" cells that the radiation will create, the IPI should kick it up a notch (along with waking up the marrow) and be more effective on any other cancer cells in my body. I really can't believe I'm saying this, but I'm thrilled. It just makes sense and I have a great feeling of hope that it will work wonderfully. How soon can we start? Turns out I have an appointment for my first IPI infusion this coming Friday, August 23! Again, I can't believe I'm excited (maybe that's not the right word!) to have poisons pumped through my veins again, but it feels like this study business has taken way too much time and things need to start moving forward. Happily, I'll also be going back to the Utah Cancer Center and Dr. Avizonis (I've forgotten how to spell it!), who did the radiation on my neck way back in the beginning of my journey. Dr. G said it's good to go back to the doctor who first treated me & that he's in contact with Dr. A on a regular basis. I'm even more grateful (yes, that's a better way to describe it) to be starting this treatment on the tumors I can feel. "I can imagine they really bug you," Dr. G said. Yes. Yes, they do. A lot. I want to feel them shrink, right beneath my fingertips, the sooner the better. My first appointment for mapping and evaluation will be next Tuesday, August 27, and treatment should probably start the next week.

There was more good news from today's visit. Dr. G said my Albumen levels (part of the blood tests that measure nutrition) were great and he was proud of me for getting my nutrition up! He said to keep doing whatever I was doing because it was working. I'm sure that's also why my energy & strength has been better the past few weeks. I also signed consent to have some of my tumor tissue genetically tested for a trial that determines which drugs work the best with certain DNA. I don't have to do anything (but give the okay for testing) - everything else is done in the labs - and then they get back to Dr. G to give him my results, which may eventually lead to treatment specific to my DNA. It could also lead to the development of new drugs in the future. Pretty awesome. And speaking of drugs, Dr. G said that when PD-1 is approved by the FDA and put on the market in the next couple of years, I would have the opportunity to use it to fight my melanoma. I feel like I beat the odds by not getting into the trial and being randomized to standard chemotherapy.

To say the least, I came home today feeling 200% better than I did last week. I realized that what I was praying for, to qualify for the trial, was not the best thing for me; that once again, God knew what I truly needed. He knew what would be best, and that it was both radiation and IPI. He knew what would work and what wouldn't. He knew how anxious I was to see results, especially in the tumors that are the most worrisome right now. He just knows. He's my Father, He created me, and He's known me since before my birth. When will I learn to say, "Thy will be done," with the first prayers? It brings such peace and comfort to know that He has had a hand in every facet of today's visit and decisions. 

I will sleep better tonight.

(Picture: Mom, Troy, and I after lunch at the Blue Plate diner in SLC in May)

Disappointed

I am so disappointed right now that I don't want to talk or blog or sit upright.  I want to cry and crawl in my bed for about a week.  Those who have followed the last few posts know that today was the day I was supposed to slide into the study/trial program, have my first infusion (whichever arm it happened to be), and finally be receiving treatment for the tumors that are so obviously growing.  As you also know, the deadline of 28 days from scans had loomed before us & kept us hopping, until finally it was confirmed yesterday by Darren (the study coordinator) that too much time had lapsed--barely--and I would need to be re-scanned before we could go on within this time window.  This was at 4:00 in the afternoon yesterday, and he wanted me to be at Huntsman, ready for new scans, by 5:30.  Tears, frustration, and anxiety, but with Dean at the wheel during rush hour traffic, we made it.  I was re-scanned (thankfully the study people agreed to pay the costs) and was scheduled for another brain MRI today in between doctor visits and the impending infusion.  I received a sweet blessing from my bishop last night and felt peaceful going to bed.  Felt like everything was going to work out for the best...
Went to Huntsman this morning at 9:30 and while waiting to see Dr. Khong, Dr. G's nurse, Karen, came in and told me to go get the brain MRI and then come back for the Dr. appointment.  So, off we went to the lab to get my port accessed, and just as Tammy, the phlebotomist, is getting ready to flush the IV, she gets a message from Karen to do a CBC panel blood test.  Lindsey asked Tammy why, since I had had blood tests done the night before and was told we didn't need to do them again.  "Well, sometimes something doesn't look quite right and they want to re-check the numbers," she said.  That's when my stomach started rolling and the anxiety mounted.
Went in for the MRI, praying not just for my brain, but for my blood.  Please, please, let it be right for the study...
Back to the doctor appointment, where Dr. Khong went over the results from the scans.  Yes, things I can feel are growing.  No, nothing new is showing up.  Then comes the bad news.  My platelet numbers are low.  Normal platelet numbers are 150,000 & up.  Last night, my numbers were 97,000.  This morning, they were 89,000.  The study required a count of at least 100,000.  No exceptions.  My white blood cells are also low.  Those are a concern as well.  I am officially a "screen fail".
It hits me hard.  There will be no infusion today or tomorrow.  There will be no calling the study people to be randomized for either standard care or PD-1.
But, there is always a plan.  Always.  Now, I wait another week and have my blood re-tested.  If the numbers go up, we are a go.  If not, Dr. G will probably want to do some sort of tests to figure out why, even though the recent bone marrow aspiration was supposed to determine that and didn't show any problems.  What can I do to increase the numbers?  Dr. Khong says, nothing--don't suddenly change anything.  Don't take new meds.  There really isn't anything you should be eating or drinking.  No, it isn't the Warfarin (blood thinner) that's causing it.  But, laughingly, he says, Exercise might help.  Exercise always helps. Lindsey says we'll all keep our fingers crossed and pray, and nurse Karen says, "I'll light a candle for you...to the patron saint of platelets!"
I feel like a lead balloon.  All the hope is falling out of the bottom.  As we make the appointment for next Wednesday to see Dr. G and get the new blood tests, I almost lose it.  Darren is especially apologetic.  He sees my distress.  He gives Linds and I meal cards to go have lunch at the Bistro.  Yes, I'm hungry, but I can't eat much.  There's a lump in my throat (non-cancerous, thankfully).
Lindsey googles "how to increase blood platelets naturally" and there are a few easy things I can do, a few things I can eat.  But, who knows if they'll really help or not?  I'll do them because it can't hurt, but it doesn't feel like it will help either.  I am so disappointed...yeah, I already said that...
I'm dragging, but I'll feel better tomorrow.  I always do.  The news has to sink in so deep that it becomes part of me, and then I can move on and think about the next step.  But, it's hard.  I'm praying--always praying--and I know that whatever will be, will be.  Not much I can do about it now...except maybe a nice, long walk after dinner...
Happy 55th Anniversary to my mom and dad on August 15...  I love you more than words can say...

Next

I finally know part of what's coming next. Tuesday morning, August 13, I am seeing one of Dr. G's associates, Dr. Khong, for the final screening process and lab work for the study/trial. I don't know what to expect with the screening, whether it's a general questionnaire or measurements of the ancillary tumors or something I haven't even considered yet; as for the lab work, I'm assuming it will be a collection of many tubes of blood. But who cares, as long as my trusty port is operating well, as usual! I'm seeing this new doctor because Dr. G will be out of the office next week & in order to stay within the timeframe of the study, I needed to be seen before August 15. Darren, the study guru, will be at the appointment, too, so I'm not too concerned with this turn of events. When everything is said & done Tuesday morning, Darren will call the study people on the phone, relay the results, and immediately hear the outcome of the computerized randomization - which arm of the trial I'll be participating in. Whatever is chosen for me, I will receive my first treatment that afternoon about 1:00 (well, let's just say that I'll be in the Infusion Center at 1:00 - I'm sure there will be more waiting as the drug is specially mixed at the pharmacy & I'm prepared to receive it...) Still praying mightily that I get the PD-1 chemo for less side effects & greater results. After that, the frequency of treatments will depend on which drug I get - standard chemo will be every 3 weeks and the PD-1 will be every 2 weeks, always on a Tuesday. Not sure how long a cycle is & when they scan to see how things are working, but I'm sure that's one of the questions to ask on Tuesday.

I have mixed feelings about it all, of course. Top priority is that things will finally start moving forward & the fight against the beast will begin. Worried about what it will take to keep up the fight. But one sliver of hope the last few weeks has been that my strength has increased - my balance is better, I have more good-feeling days than bad, I don't get as tired, I'm able to work a little longer & more often, I went to the temple & felt close to normal... It's those little things that make me rally and believe that  I'm being lifted up by Higher Powers. I've been down before, but I've bounced back... And I can do it again! Thinking happy thoughts, praying heart-felt prayers, singing & smiling, loving my babies (tiny and not-so-tiny), and expressing thanks. It's a good life.

July's Lazy Daze

Still in the waiting zone.  No news yet.  I was a little worried when the biopsy spot in my back continued to bleed and "ooze" fluid for several days past the normal healing time, but eventually it did stop.  It still feels a bit bruised and swollen--somedays I imagine people can see it poking out from behind, this "walnut" turned softball in my back (not really, but it seems that way...)  I also was tired of my old pedicure and needed a good trim and fresh polish, so Janessa and I tried a new place not far from home.  Nice people, nice shop, but the "manager" got carried away with the scraper/razor thingee they use on the bottoms of our tough feet and took a small chunk of skin off my heel.  It bled and stung like crazy, but I sucked up the pain and chalked it up to what has become normal - a day never passes without some sort of new hitch that causes pain.  Unfortunately, when I got home, I also discovered that she had clipped the cuticle on my right big toe until it was painful and bleeding, too!  Oy!  Might be a while (if ever) that I go back there again.  Disinfectant and Neosporin and hobbling around a few days and I'm finally back to where I was before the pedi.  I do have cute pink toes, though!

 Stuck in the lazy "daze" of the month of July.  Hot outside, cool inside, nothing pressing to do but read books, watch movies, EAT, and run somewhat meaningless errands just to get out of the house once in a while.  I love it... and I'm trying to enjoy it while I can.

July also brings celebrations and holidays - 4th of July and Pioneer Day (July 24).  Tradition made me long for the Handcart Days Parade on Main Street Bountiful, but just couldn't pull up the energy to battle crowds to set up chairs in the morning, find a parking spot before 6 pm, and slowly melt into the pavement watching the parade shoulder to shoulder with the town folk.  So, for the first time in forever, we didn't go to the parade.  Instead, we bought hamburgers and took them to our favorite fireworks-watching spot above the junior high long before dusk and waited for the show to begin.  Aaron and Linds and family joined us and I sat back in my camp chair and watched the kids.  Never a dull moment!  Always get teary as the fireworks start, thinking of my mom and dad and all us big kids and our little kids and the noisy, wonderful time we'd have every year... It will never be the same.

July is also birthday time for two of my sibs.  I do love family.  Makes all this waiting, watching, bleeding, and praying worthwhile.

(Pictures:  Troy, Dionne, "Frankie", and me on a Christmas Eve long ago; Troy and Dionne - the birthday kids!)

I Consent

The biopsy went well this morning. They took the core samples from the "walnut" in my back. My "kiwi" has suddenly started hurting once in awhile - it couldn't be that the four-footed creature in our home surprises me sometimes when I'm lying down and puts his pointy little toes right on the tumor! OY! Sends me through the roof! Anyway, I was glad they didn't have to add more pain to that spot just now. After being numbed, I didn't feel a thing during the biopsy...just heard the "click" of the scalpel as it cut off pieces of tissue. Darren was there with the nurse and dermatologist to make sure they got enough tissue to satisfy the study board. Personally, I think they took out oodles. In fact, wish they could take the whole thing out right now - but then there's always the risk of leaving some cancer cell behind that might start a party with all his aunts, uncles, & cousins...

I also signed all the consent forms to get into the study, so we're good to go. Next step is to wait for the evaluation on the tissue samples, which typically takes about 10 days. From there, Darren will call and have me come back in for the screening process with Dr. G. Not sure of all that involves, but there will be blood drawn to make sure I'm still a good candidate. After that comes the randomization, which is a quick phone call to the study center, where they immediately tell Darren what arm of the study I'm assigned. That's where our prayers will be concentrated. And within a week after that, I'll be starting treatment, whatever it may be. 

My head is whirring, but I'm on the path. God grant me patience to wait and accept His will in all things. 

Walnut & Kiwi

Today we saw Dr. Grossmann for results from last Friday's scans and brain MRI.  My nerves kept me up during the night, which didn't help the whole processing info stuff.  I once again was grateful for Lindsey being with me and asking all the unknown questions and digging deeper into the inevitable.  Love her.

As I expected, the two tumors that I can feel under the skin (left lower back and right side groin areas) have grown.  The tumors in my liver seem to be stable or shrinking.  Bad news/good news.  The very good news is that there are no signs of other tumors anywhere, including in my brain.  Whew, instant relief.  The two subcutaneous tumors were felt and measured by Dr. G and his nurse, Carolyn.  Dr. G said he liked when they used to use "fruits and nuts" as a measuring stick - the one in my back is the size of a "walnut" and the one in my groin is the size of a "kiwi".  So, now, what to do about that walnut and kiwi?

Dr. G recommended that I go for the trial/study program with the new investigative drug, PD-1 (it was the same trial I wanted to get into about three months ago when we found out my iron was too low to qualify). 
Darren's co-worker, Amanda, came in to give us the updates and "Reader's Digest" version from before, much of which I still remembered.  Basically, if I am accepted, I will be put into a randomized computer selection with two chances for the PD-1 drug and one chance for standard chemotherapy.  I am praying mightily that I beat the odds and get the PD-1 arm of the trial.  But, if by chance I am selected for the chemo, Dr. G explained that it would be his choice of action anyway to kill these tumors and anything else that even thinks it should become cancerous.  We asked about radiation to the specific tumors and he said that at this point, he would be more comfortable killing everything, which chemo would do, rather than just the sites of the tumors, which radiation would do; and besides that, radiation would not do anything to the small tumors in my liver, where the chemo would also attack those.  Seems an easy choice, right?  I think so.

My biggest concerns are the side effects of the standard chemo.  We all know them and see them, especially those of us who are regular visitors to Huntsman - loss of hair, fatigue, flu-like symptoms, etc.  I know I could handle these side effects (look what I've already had to face for the past 2 years), but I also know how hard it would be on my self-esteem to lose my hair, my eyelashes, and my eyebrows.  I feel very vain admitting my fears, but it's true.  From birth, I have had a mop of hair.  It's not always pretty or healthy, but it would be very difficult to give it up completely and be bald.  And to lose my eyelashes, which have always been long and fun... I just wouldn't feel like me.  I wonder at the toll this loss would be and whether I could be brave enough to fight through it.  Of course, I know I wouldn't be alone and I know hundreds & thousands of women have done it before me and have come back triumphant.  Fighting melanoma feels so much more long-term - to the death - so I can't help but think that I'd never have hair or eyelashes again.  Stupid thoughts, really.  What does all that matter when there is life, when I can remain with my family longer? 

So, my prayers (and I ask for yours, too) are to be selected to the PD-1 arm of the trial, which side effects are much less dramatic and do not include hair loss.  But, if it is God's will that I go through standard chemo, I will also pray to be strong and able to handle that difficult road.  Neither treatment regimen will be fun and I will need the strength that only comes through the Spirit and faith and hope to get me through it and see these tumors defeated.  I continue to believe in miracles.  David killed the giant, Goliath, with the help of the Lord.  I have the great opportunity (another miracle) to have this disease in a time when so much research is going into melanoma treatment, and I know that is part of the Lord's plan, too.  He will be with me.  He knows my little vain heart and the blessings I need.  And who knows?  If I do lose my hair, hopefully it will grow back curlier and better than ever before...

Next step is a "core biopsy" of one of the subcutaneous tumors, and that will be done on Thursday, July 18.  From there, the trial/study team will gather tissue samples, blood work, consent forms, and all the ballyhoo the drug company (Bristol Myers) needs to get me qualified.  Within three weeks, we should know if I'm accepted, which arm I have been selected for, and when infusions will begin.  Miracles & hope...

Family Time

It's summer and that means "road trip".  This year it has also meant "baby time", as we traveled south to welcome the newest member of our little family.  Janessa and I were both able to take the time to be in St. George the week before our baby's birth and the week after he arrived - a 2-week stay!  Don't know if we've ever been able to stay that long before, but it was wonderful.  I took the time off from physical therapy and work (slow time at work now anyway) and settled in with Mom and Troy, spending lots of time at Chelsea's house, too.  We experienced the epic heat wave that has settled over the West, with temps in the low 100's, often climbing to over 110!  The little Stephenson kids were able to take advantage of the pool at Nana's complex, with Uncle Troy and Aunt Ness and their daddy as their water buddies and Grammy watching from the shade of a huge umbrella.  Chelsea was also able to get in the pool a few times before giving birth and she looked so much more comfortable, balancing that baby tummy in the weightlessness of the water.
Early in the morning of Friday, June 28, I woke up to the text message alert on my phone that said, "He's here!"  I immediately started to cry.  My sweet Chelsea had given birth, naturally, with no meds, and had seen her baby born in the water of a specialized "pool" provided by her midwife, DyAnna, right there in the comfort of her own home.  I was so proud of her and all her preparation.  Though it didn't happen exactly as she had imagined it (labor became intense before she could use most of her Hypno-Babies techniques), it was still a glorious, miraculous event.  Precious JAX ROY Stephenson was born at about 3:38 AM, weighed 10 lbs. 2 oz., and was 22 inches long!  He has a perfect little round head with lots of dark hair (his brother, Lachlan, was already proud of his "mohawk"!)  I was able to see and hold him when he was about four hours old.  Such a dear baby!  I love him tremendously already!
Those first few days after his birth were stressful and sleepless for Chelsea, who has always had a hard time getting her babies to nurse.  DyAnna insisted that "someone" (Mom!) take the older children for most of the day to allow Chelsea to get some deep, much needed sleep, so I did my best.  Of course, Robby is a wonderful dad and goes over and beyond for his kids.  I wish I could have done more so that both of them could have had some alone rest time.  But, I was grateful for the strength I did have to take care of three little ones for 5 or six hours a day for a few days.  We weren't able to spend time outside (unless there was swimming involved!), so we watched a lot of Disney movies and cartoons.  Olive and Knox were quite inventive, playing hide-n-seek in Nana's clothes closet and coming out wearing her shoes and sweaters, while Lachlan thought watching Netflix kid's shows on my iPad was the bomb.  I wish I had thought more about fixing them meals to eat or freeze, but we did a few take-out runs.  Janessa was a big help, too, picking up the slack that I didn't have the energy or the enthusiasm to do.  Aaron and Lindsey and girls were in St. George, too, and they helped by taking Lachlan swimming at their condo and paddle-boarding out on the lake!  He was one happy boy!  He does love cousin time and misses them when they're gone.  I loved how Knox called me "Nana" the whole time I was there, unless someone corrected him and said, "No, Grammy!"  We'd fill his "cup" with juice, grab his favorite "blankey", and snuggle on the couch until he fell asleep for a nap.  He wasn't much for sitting on my lap, but he'd sit by my side and then cuddle as close as possible until he was out for the count.  And both he and Olive quickly discovered that I had a good supply of gum in my purse, so they'd bring it to me at least once a day for a "big piece".  When I ran out of spearmint and only had peppermint, it was tragic.  "Too hot!" Knoxie would say.  I vowed to get bubble-gum flavored at the store, but never did.  I'll have to stock up for next time.  I love, love, loved being with them...but this was one exhausted Grammy when we'd come back to Mom's place after dropping them off for dinner or tubby time or swimming in their own backyard.  Hooray for physical therapy which gave me added strength through those two weeks...
I always hate to leave St. George.  Hate to leave Chelsea with her little herd of small ones...  Hate to leave Mom, since my visits seem to help get her out of the house and "doing"...  Hate to leave Troy who is going through a rough patch right now and needs diversions, too...  Hate to leave the hugs and kisses and "watch this, Grammy"...  Just hate it.  But, this week is Young Women's camp for Janessa and I have CT scans and an MRI on Friday.  Oh boy.  Back to real life is really the pits sometimes...  But I was happy to be with my good hubby again, who held down the fort and took care of our little dog, Einstein.  I missed both those boys, so much.  Made the coming home a little easier.
Will write again after my doctor visit on July 16 to get the results of the scans and MRI.  The tumors in my groin and in my back are much the same.  I can feel them both and I don't think they've shrunk much in the past 3 months.  I just hope and pray that no new ones have grown anywhere and that the ones in my liver have disappeared.  Pray with me, please.  It's hard to think of the future when I know there are probably treatments down the road again...  Just makes me more grateful for family time.

Celebrating Life

May 30, 2011 - another early morning radiation treatment at the Utah Cancer Center...

May 30, 2012 - after major Whipple surgery and IV liquid food, first bite of REAL food (yummy grilled chicken) in 30 days...

May 30, 2013 - in between scans, just waiting - reading "The Light Between Oceans" in a quiet house with my puppy on my lap, showering late, no makeup, watching favorite movies ("Chocolat" and "This is it")...so far...

It's been an interesting year. No new surgeries, but introduction to the Infusion Center with the IPI treatments & iron infusions. Yep, this blasted cancer has kicked me to the curb a few times, but there is always an answer to beat it back. Continually fighting, whether it's shrinking tumors, gaining strength through exercise & physical therapy, eating, eating, eating, moving forward. LIVING with cancer, never dying from it. Dealing with stress, mostly financial, which I've come to realize ties me in knots and impedes healing as much as sun without sunscreen. Worry? Yes, always, because of my life-long weaknesses when it comes to money. Ugh. So frustrating. But with the anxiety comes the hope and desire to do better, be better, try harder...

So, I celebrate life with those I love: my good husband who works long days to give us a little more to pay those bills, my teenager who gives me support and a hand to hold and stories to make me laugh, my married kids who make me so proud of the good people they are & the families they are raising, my precious grands who brighten my days & shower me with hugs & smiles ("you know what I love? YOU!") and all my extended family. I do have to remember and remind others that I'm stronger than I look...I CAN do it & I WILL do it. I need encouragement, not "baby-ing", which makes me feel weaker... It's that worry gene in all of us & I understand and do it as much as anyone.

Just last week, our family celebrated the life of my precious Aunt Barbara. I miss her already. The computer was our lifeline to each other - she loved to send cards for all occasions through email, as well as encouraging thoughts. She remembered our special days & kept us in her heart and prayers. She always told us she loved us, sincerely & honestly. Celebrating life was her mission. Celebrating our individual lives was her passion & I always felt special reading her words. Love you, BAB...

Stretching

Yesterday, I received my fitness "prescription" from theWellness Center and got to meet with Kim, another wonderful physical therapist.  I was a little apprehensive because I want to think I'm stronger and more able to do things than I really am.  I know this is all tailored just for me, but what if it's too hard from the get-go and I get too discouraged?  Kim put me at ease right away.  We were going to move slowly for the first few visits and get my muscles "fired up" again, reminding them what they're supposed to be doing.  I liked that.  I was also a little afraid of the treadmill, just because it was scary that I got so winded and frantic the last time I was there.  No worries again.  Kim let me pick what machine I wanted to warm up on, and I chose the bike-like machine where you pedal and move your arms opposite your legs.  It felt good to be moving and not too strenuous.  Just right.
We started out with stretches...and by the time my hour session was over, we had just barely finished the list of exercises for stretching!  We both laughed (I was thinking, "Really?  You mean there is more?"), but again, Kim assured me that as I learn the routine, the stretching time will go faster and I'll feel more confident moving on to the actual exercises. 
They are all so kind.  Last session and this session, it was one-on-one with me and the therapist and no one else.  That attention can't help but make you feel important and and worth their time and expertise.  I expect from here on out, there will be other patients on the machines with me, but that's okay, too.  We're all working for the same results--to be stronger and better able to handle whatever this demon cancer throws at us.  It's a good feeling to be doing something, even if it seems as if I'm hardly moving at all.  For instance, I had to do some leg lifts on a big padded table and I could barely get my right leg off the surface.  But Kim encouraged me, saying, "No, I see it moving!  You're doing great!"  Ha!  Someday soon I hope to be able to actually feel it moving as well.
I go again tomorrow and then twice a week through the rest of May (we'll work on scheduling June and July soon).  I did get a little shaky after, but I had my carton of protein drink on ice in the car and after I drank that, I felt better.  It's just new stuff and my body has become comfortable being sedentary, but now that the weather is behaving better, I want to get out and walk without wobbling.  Funny how our goals change!  Once upon a time, I could walk three miles in an hour--now I'd be lucky to do a third of that without collapsing. 
It was Mother's Day last Sunday.  I am so grateful for my own sweet mama, who was able to come home from the hospital Monday after having her colostomy reversal surgery.  I love her and her "hopefulness".  I love my precious children:  Aaron and Lindsey, Chelsea and Robby, and Janessa. They are very good people and I'm a proud mom.  And of course, my six (soon to be seven!) wonderful grandchildren are the light of my life.  They make me want to get up in the mornings.  Life goes on, some days are better than others, but the bottom line is that I'm living on love and prayers and hope.  It's a good life...

From Weak to Strong

Yesterday, I had my appointment at the Wellness Center with Dr. Hansen.  I was so ready to begin this new phase of my well-being.  Lately, I have begun to feel much weaker and more fatigued, with weird symptoms that are affecting my every day life.  For one thing, my hands are tingly/numb, which makes it very hard to grip or type or write with a pen.  If you know me well, you know I love to write long-hand--everything from cards and letters to short stories.  And, as my family teases, that writing is done in "typewriter print."  Now, I can barely hold a heavy pen and it's hard to write legibly.  In fact, it looks horrible.  I don't like it at all.  It is also affecting my job--when you can't type accurately, it's frustrating.  So, I haven't been putting in the hours I would like with my wonderful job, which makes me feel guilty (for not helping more when they really need the transcriptionists) and powerless to contribute a few dollars to our expenses.  Another weird thing is that my legs and arms are much weaker than they were even a few months ago.  I'm back to the "days out of the hospital" feeling, which is not something I want to feel right now, if ever.  I'm not sleeping well either, blah blah blah.  Just done with feeling this way...

The appointment went very well, for the most part.  My few minutes with Dr. Hansen was informative, as she went over my health questionnaire.  I also liked the physical therapist, who was very kind and gentle.  They took my vitals (once again, my blood pressure was very low--really need to talk to Dr. Beckstead about stopping my Losartan or at least decreasing the dosage) and had me wear a heart monitor through the evaluation.  My first test was on the treadmill.  The two doctors were standing on either side of me and encouraged me to hang on to the balance bars as we started.  Every few minutes, they asked how I felt on a rating system of 0 to 10, 0 being no real stress at all.  At first, it felt great to be moving.  If I could have stayed on that level, I would have been happy.  But, very gradually, the speed and the incline was increased.  All the time I was walking, we were talking about Bear Lake and their cold winters, since Dr. Hansen had just bought a cabin at Bear Lake.  I was getting more and more tired, even anxious, and finally said, "Okay, I'm done," right in the middle of someone's sentence.  Unfortunately, I think I had waited too long because the very few seconds it took to decrease the speed and incline were torture and I honestly felt like I would fall off or start bawling.  Part of me was upset to be so weak...I was barely on the machine more than 5 minutes!  It was hard to take.  The other tests only confirmed how much muscle I have lost--strength tests, balance tests, etc.--and I was pretty depressed by the time we were finished.  At one point, I told the therapist how sorry I was and he said, "Don't ever apologize.  This is what you can do now and we'll help you increase your strength so you can test better in the future."  That made me feel a little better, but honestly, I felt so OLD. 

The next step is the doctors will go over all my tests and write me a "physical therapy prescription", just for me.  I will go back in a couple of weeks to get that prescription, which will be entered into the computer so that any of the physical therapists will have access to it.  Then, I made appointments to go into the workout room twice a week through May (I'll have to play June by ear with school ending and Chelsea's baby coming, etc.).  It feels good to have a plan, but I am really so tired of being tired and not feeling normal.  Ugh.

It has been two years since my initial diagnosis. Just a few days ago, on May 1, it marked one year since my "Whipple" surgery.  Sometimes I look at all I've had to give up because of this devil cancer, which now includes the writing bit I talked about, and resigning from the Symphony Chorus.  I will probably never go back to the chorus--my voice is not the same and I'm sure I couldn't pass an audition.  I am too skinny and unrecognizable to most people who haven't seen me in a while, and I don't like it.  Anyone who says, "Wow, you look so good," hasn't looked close enough to see the real me.  I don't like it.  I would gladly have an extra 20 pounds if it meant I felt better and wasn't so weak or tired.  I have not only lost over 100 pounds in two years., but I have lost an inch in height.  I am now 5'8".  Probably getting older has contributed to this, but I think not having that core strength in my abdomen and chest has shriveled me up, too.  I will never be able to wear heels again to church and other fancy events--I am too wobbly and unsteady in them and it's hard for me to stand up without being flat-footed.  But, then again, what I have gained, experience-wise, is priceless and I wouldn't trade that either.  I am stronger in faith and hope than ever before.  I know God has a plan for my life and He won't take me one day before that plan is fulfilled.  I know it.  "The flesh is weak, but the Spirit is willing," has a whole new meaning in my life.  I hope that where some doors have closed, others will open so that I can find more joy in this journey.

(Picture:  Chelsea and I in another time and place...)

What a difference a week makes...

I had a terribly stressful week last week. I was bogged down with an avalanche of papers as I tried to get my tax stuff together. It was pretty much all in one place, but all those medical receipts & bills still needed to be organized & counted. It was so stressful that I was lying awake at night, thinking of what needed to be done, until I finally would have to get up in the wee hours, creep into my office, shut the door & turn on the light, and do what I could for a few hours. Ugh. Then I stressed that Barb, the tax lady from last year, wouldn't have time to prepare our returns since I had left it to the last minute. Happily, the first "tender mercy" of the week was a perfect appointment at 9:30 on Thursday morning, April 11th. Sweet Barbara - when I told her how anxious I'd been, she said, "oh, don't ever worry about your taxes. I'll take care of everything." It was such a blessing.
Friday, the 12th, I was scheduled for CT scans and a brain MRI. More stress. Every little ache & pain felt like the beginnings of a new tumor...or three...or 12. I imagined my brain would be bulging with tumors since headaches were coming and going all week. It was the same as it always is just before my scans, but my stress level seemed twice as huge. I wanted so much to be able to qualify for the PD-1 trial, but new tumors would certainly disqualify me. No wonder my stomach was in knots and my head was pounding.
Next tender mercy was that my new port worked absolutely perfectly! First poke - and no numbing cream! - and blood tests were done and I was accessed for the scan IV! This HAD to be a good sign! Scans were quick & easy, and the MRI seemed to take much less time than usual. Dean & Ness were in the waiting room & had been visited by the lady with the snack cart, so they were happy. The only downside was that I would have to wait through the weekend until Tuesday to get the results from Dr. Grossmann.
On Tuesday morning, Linds & I were at the clinic a little before 10 AM. No early blood work since I'd already had tests before the scans. Hopefully, Dr. G was already looking over them and going over the scan results. After checking in, I sat beside Linds in the waiting area. I saw Dr. G come into the clinic & he gave me a small wave, but didn't smile. I was more nervous than ever. I always imagine the worst, the dialogue of bad news ever present in my mind. I imagine the words & how I'd react, the weight of them heavy on my heart. I can never seem to imagine good news...maybe because I know how that would feel. Finally we were called back into the exam room. We were both pretty quiet. Later, Lindsey said she was worried when she didn't see Darren, the trial manager. It seemed to prove that I hadn't qualified for the trial. Scary. Dr. Grossmann came in at last & after saying hello, he sat down at the computer and stated, "Well, your scans look great. There is definite improvement." Did we hear him right? Both Linds & I start asking questions - are the existing tumors shrinking? are there new tumors? Dr. G explains that I'm a "slow responder" - that the IPI was still working and working well. Two of the liver tumors had shrunk "significantly" & the third was hard to pick out on the scan - too small now?? The groin tumors were also smaller and my brain looked "wonderful". There was one little glitch and that was that I can now feel the small tumor on the left side of my back, though it could not be felt before. Dr. G wondered if that could have come about because of my drastic weight loss. He also looked at the blood tests and said that the iron infusions had worked & my blood levels were now normal. He was somewhat concerned about my liver function levels that had slowly trended higher for the past few months. He wanted me to have a specialized blood test as soon as possible; if it continued to go "up", there might be a need for a liver biopsy. Otherwise, he declared that since the IPI was continuing to work, I would not need to apply for the trial but would go back on a 3-month scan schedule, which meant I would not need to go back to Huntsman until July (other than for the liver test). Oh happy day! Both Linds & I were in shock! It was a "good news day"!
Today, a week since the scans, I went to the clinic for the liver blood test. I saw Darren (the trial manager) and he was happy about my good news, too. He said the trial would be there IF & when I might need it, but he was happy that things were looking better rather than worse. I also got to have my port accessed by Tammy, the lab nurse who was usually the one who had to prick & poke my poor arms to take tests or start IVs. She was thrilled with my port and how well it was working. It was so easy to take this latest test! Hooray! Later this afternoon, Dr. G's nurse, Nancy, called to say that the liver test was now trending "downward" and there would be no need for the biopsy. Another miracle in a long string of them throughout the week... And to think it all happened within seven days.
After I had finished my blood test, I walked down to the Wellness Center (where I had met with the nutritionist) & asked the kind lady at the desk if she could recommend any pamphlets or brochures about gaining strength & muscle again. She recommended a fitness program that could be specifically ordered just for me & my cancer - exercise, nutrition, physical therapy, even acupuncture! I first have to see if insurance will cover a visit with the fitness program director, Dr. Pamela Harris (?). If so, my first visit with her will be in two weeks. If they won't cover it, the kind lady said she'd figure out another plan we can do. It's one of the mottos of Huntsman - if Plan A doesn't work, we always have Plan B, C, or D. I love it.
I cannot attribute this week of miracles to anything special I did, but what the Lord did for me because of all the prayers by so many in my behalf. He alone took my "slow response" to IPI and made it work on my tumors. He alone blessed my blood tests to show improvement, some within just a few short days & weeks. It constantly amazes me. He knows me. He knows how my body & soul were stressed & sick...and He gave me hope again. I am so grateful, thankful beyond words. I love Him dearly.

Times & Seasons

I've always believed there is a time and a season for everything in our lives.  When I was a young mother, more seasoned moms would tell me to enjoy my little ones, that it was my season to be busy with toddlers and babies.  I tried to do that, though not always successfully.  I find myself wishing I had done more and appreciated those cuddle times and one-on-one times.  It has been that way with my church responsibilities, too.  Whenever I received a call to service in the Church, I was reminded that it was my season and time to be in the calling I was given from the Lord.  Sometimes that was a great comfort; other times, it just added to the worry and stress.

A few weeks ago, I was released from my current calling in the Relief Society organization.  My bishop specifically reminded me that it was my time and season to concentrate on healing and strength and miracles and faith.  I had to admit that I have been feeling very guilty lately when I was too sick or tired to attend meetings or help the other members of the presidency carry their heavy loads.  It seemed selfish to me that I should be released when these four other women are either working full time or are new mothers with tiny babies and toddlers...what reason did I have to complain about a stomach troubles or bone-aching weariness, which I'm sure they all shared, as well.  And as I thought about this release, I honestly couldn't remember a time that I have not been serving in some capacity in the Church, starting with my first real calling as the Junior Primary Chorister in Las Vegas at the age of 14.  In those days, long ago, Primary met on Wednesday afternoons after school.  I loved those days.  I loved to sing and I loved to make cutesy visual aids to help the little ones learn new songs.  Best job ever!  I've had some tougher callings since then, but there was always something to do and I knew I could rely on the Lord to carry me through my insecurities and inabilities.

I do have a new calling, given just seconds after the release, but it will mostly involve phone work.  I can do that, weary or not.  I'm grateful for it, even though it is a calling that has typically been given to the "old ladies".  Not in our ward, though; we don't have enough old ladies!  It also makes me feel that I am slipping, much like the occasional tummy problems and the aches and pains and the need for a 2:00 nap every day.  I am not what I was two years ago...or even one year ago.  I have an evil cancer, I am thin to the point of worry, I can barely make it up a flight of stairs some days...  Ooh, I hate it.  But for all that I can't do, there is still much I can do.  I made it to the temple this week and I cried and cried.  I'll make it there another time this month, too, I know I will.  There is a time and a season...and this is mine.

(Picture:  my sweet friends in the Relief Society presidency--Whitney Tibbs, Lauren Kelly, Ann Pearson, and Candice Flammer.  I love these beautiful girls dearly!)

Early Morning Catch Up

It's 1:15 AM.  For some reason, I can't sleep.  Too hot, too tired, too sore, too busy in the brain... It all amounts to the same thing.  And since updating the blog has been on the top of my To Do list for far too long, that has become the priority this sleepless night.  Sorry for the delay.

Thursday, March 28, was my final iron transfusion at Huntsman.  Again, I will say that it was not the magic elixir I hoped and prayed for.  There was no outpouring of strength & energy like I wished, but that may have been a dream anyway.  The port worked like a charm, though, and I am more grateful each visit that I have it.  We'll see if I still love it when it comes time to draw blood.  So far, it has worked putting things IN...how will it be taking things OUT?  I was also grateful to have "T" as my nurse that day.  She was the nurse I had for my first visit to the Infusion Center when I started the IPI and she remembered me.  She wanted to know all the news--what was happening, why was I back, etc.  Very sweet girl.  There are certainly mixed blessings at being recognized there.

On Tuesday, March 26, I had an awesome experience that I have shared with quite a few already.  I was in the last half hour of my infusion when I overheard some people visiting in one of the infusion "pods" (there are 8 or 9 pods in the Center, each with four infusion chairs with their own TV, IV pole, etc.).  These people were joking and laughing as they discussed treatments & other related cancer subjects, and over the top of the pod "walls", I could see a young-ish man talking to whomever was sitting in the infusion chair.  I thought he was a doctor by the way he talked and joked.  I also heard him offer candy to the patient sitting in front of him, and I remember thinking, "Well, that's different!"  I was doing some surfing on my iPad, so didn't realize that he had made his way over to my pod and was talking to the guy receiving treatment behind me.  Now I started thinking he was a volunteer or something like that--once again, he offered this guy candy or chocolate.  Everything he said was hopeful and positive and affirming, just what a cancer patient wants to hear and just what a doctor or volunteer should offer.  The guy behind me was telling him that he was the father of 8, was currently unemployed, and that he had decided his "job" was to get better for his kids.  I heard Mr. Candyman say that he, too, had battled colon cancer and was first diagnosed when his daughter was about six months old, and that at the time, he wondered if he would ever see her do any of the normal things kids do.  Now, she was five and he loved being there to see her grow up.  Next thing I know, he has walked into my pod space.  Nice-looking guy, 30-ish, earring in one ear, tattoos, wearing a black tee shirt that says, "#%*$ Cancer" across his chest...and he is wheeling around his OWN IV pole!  He's actually receiving his chemo treatment as he visits each pod!  On the pole are three bags of candy--Laffy Taffy, Kit Kat bars, and M&Ms.  He asks me if I'd like a piece and I go for the Kit Kat.  He asks me how I'm doing and I tell him that I'm okay.  He laughs and says something about when a cancer patient says they're okay, they're really not okay; if they were really okay, they'd say something like, "I'm doing great!"  I laugh, too, and give him the Reader's Digest version of the past two years.  He says he's sorry and I can tell it's sincere.  "Being a member of the Stage 4 club is not something you want to aspire to," he says, and I agree.  He tells me a little bit of his story, aware that I've probably heard snippets of it already as he's made the rounds, and then tells me how he uses laughter and humor to make it through this ordeal.  He admits to being a jokester and that he loves to prank his doctors the most.  He says he comes to most scans in costume--once as a lion, once as Cupid, once as a black cat--and that one time, he was chased through the building by security, who thought he was just some nut case on the prowl at Huntsman!  I laughed and laughed.  Then, he got serious and said that people are always asking him if he ever has "bad days", and he says, "Of course.  There are times I'm driving home from another round of chemo and I'm just bawling my eyes out.  But, then it passes and I say, Screw cancer, you're not going to beat me.  I'm fighting, so just get used to it."  He's had numerous surgeries, countless rounds of chemo (thousands over the past 5 years!!), and "still, there are mets to be conquered."  Wow.  I'm blown away.  I don't know if I could do what he does.  I sit in my pod and read and play on my iPad and allow time to pass, but this guy...this guy is improving the very air around him by sharing himself.  He asks me what my next steps are and I tell him about the scans coming up and the trial we want to get into and he sincerely says that he hopes and prays the scans are "clean" and I'm able to do the trial and get all the help available to take away the cancer.  It touches me deeply.  I wish the same for him.  As he leaves my pod and runs into my nurse, he stops and tells her thank you for the fantastic job she's doing and for all the help she is to her patients.  I can feel the love from where I sit.  And it's not just her--he reaches out to techs and other nurses and tells them how much he loves them, too.  And they all love him.  I love him now, too.  He is a powerful inspiration.

So, after I've told a few people about my experience with this guy, I'm reading on Facebook the next day, and there he is!  "Beautiful celebration for Daffodil Days at Red Butte Garden, cancer survivor Dov Soporin brought tears to everyone's eyes as he spoke of love..."  I know Dov! (pronounced "dove", as in the bird)  I wish I had been there to hear him speak.  I posted a comment and later someone from the radio station sponsoring the event said they were going to try to get a transcript of his speech.  I immediately asked for a copy.  It was amazing and certainly no coincidence that this all happened and involved me at the same time.  I needed his strength to boost my own and I am so proud to say I know him.  Thank the dear Lord for people like this who cope with their disease by lifting others.  I hope to get to meet him again someday and thank him for his great service to all of us.

I'm doing fine, really.  Maybe not great, but well enough for now.  Still trying to eat and gain weight--wow, didn't think I'd ever be saying THAT.  Sometimes, I catch a glimpse of myself in the mirror (usually when I've stepped out of the shower) and I think I look like a Holocaust victim.  Much too skinny, no muscle in my puny arms, and "elephant skin" hanging all over in the worst places.  And then there's the port that sticks out below my collarbone...  Happily, the pancreatic enzyme pills are still working and the diarrhea is gone.  Now that the spring weather is upon us, I'm hoping to get out more--maybe teach Einstein what it means to be on a leash and WALK instead of trying to trip me up with his jumping and leaping.  CT scans, brain MRI, and blood work are Friday, April 12, with a follow-up visit to Dr. Grossmann on April 16.  Pray for good results.  Iron up, weight steady, no new mets (metastatic tumors) anywhere, and progress for the trial.  Simple requests, right?  Heavenly Father can do it.  He can do it all.  And He will, I know it.