Friday, March 30, 2012

The Ball is Rolling

Friday, March 30, 2012: Today was my first consult appointment with Dr. Courtney Scaife, Oncology Surgeon at Huntsman. I know I moaned and groaned about not having a plan the last couple of days, but things have actually been moving (though a bit too slow for me). Nurse Karen did call me back the day I was having a tizzy fit and told me that the meeting with Dr. Scaife WAS part of the plan. Okay? Got it? Yep. Then, Thursday morning, Jennifer with the MORD Study/Trial for Dr. Antebacka (sp?) called to see if she could come into the consult meeting with us, just to hear what Dr. Scaife would say about the surgery. I like Jennifer a lot - even found out that she lives just a few streets from me! I think she'll be a great support, with or without my involvement in the study. She also asked me if I was leaning one way or the other, and I told her that I was considering being part of the study, but I wanted to hear what Dr. Scaife had to say. She said she had been talking to Dr. Grossmann and team (I love when they say that - it means I'm being thought of even after I leave their offices) and asked if I would be willing to sign consent forms and do some lab work, just in case I decided to participate in the trial - that way, I could save myself a trip to the hospital. I agreed. It was a PLAN!

Linds and I got to Huntsman about 9:45, walked right past our normal Clinic 2D and walked down another (unfamiliar) hall to Clinic 2E. Filled out a bunch of medical forms (again - it's neverending) and was shown to a room. Right away, Jennifer found us and we talked a bit about the trial and what I'd need to do to start the application/screening process that day. Then, Angelique from Social Work, came into the room and told us about her services - that she is there to help with "emotional peace, spiritual peace, and financial peace." Ahhh. That's comforting. Then, in comes Dr. Scaife's nurse (yes, it was a bustling little room for a while there). She asks questions and takes the papers Linds & I have been filling out and tells me they have to do a physical exam. Off comes the clothes. Into the fashionable gown. My ugly toenails poke out from under the scratchy hospital blanket (gotta get that pedicure SOON). She comes back in, does a very quick exam, including a rectal exam "because one of our patients ended up having rectal cancer that we didn't know about and now we have to examine everyone." Oh joy. I'm sure Linds wanted to run from the room - I know I did. I think that five seconds of privacy invasion upset me more than anything else today. Bleck. Finally, I change back into my clothes, Jennifer comes back in, and so does Dr. Scaife. She's thin, blonde, and very intelligent and warm. The first thing she does is straighten a picture on the wall, confessing her OCD and saying it would have made her crazy throughout the consult. I told her I'd noticed it, too, but hadn't remembered to fix it after getting dressed again. I liked how she got right to the point, bringing out a small stack of three or four black and white copies of my scan from last Thursday. Holding them on her lap - right side up for me, upside down for her - she proceeds to point out the unknown gray blobs on those scans, which end up being my stomach and my pancreas and my veins and my arteries. And there in the midst of all those hard-working body parts is a little white-ish spot, the blasted tumor. She shows another "slice" of the scan, this one a little bigger than the other, and once again, there is that slightly-off blob by the head of my pancreas, next to a lighter gray vein. She turns the papers over and starts to sketch - her "Etch-a-Sketch" drawing, she calls it. I tell her I'm impressed that she can write so well upside down. She outlines the stomach, the liver, and the intestines and shows me exactly where the tumor in question has lodged itself. Several times during our conversation, she says, with confidence, "I know I can get this out. I know I can help you become 'NED' - no evidence of disease." The whole issue at this point is, how extensive will this surgery be? Dr. Scaife explains the two scenarios: As she sees it through the "eyes" of the scan, this "lesion"/"tumor"/"whatever" looks like a lymph node. The problem is that she won't know for sure until we are in surgery. If it is a lymph node, it's a simple removal - lift up the pancreas, take out the node, send it out for testing, and clean out anything else that looks the teensiest suspicious. Surgery takes 2 hours. Hospital stay is 2-3 days. If this thing is touching the pancreas or has lodged itself anywhere near the nose of the pancreas, it's a little more complicated, but can still be removed fairly easily. If it has invaded an area more prominent in the pancreas, that calls for a more complex surgery - the Whipple. She said she's done many, many of these surgeries, so she feels very confident that she can remove the melanoma entirely. But this surgery, as Dr. G told us previously, is not fun. Dr. Scaife said it's an 8-hour surgery. Hospital stay is 7-10 days. On the diagram, she showed us how a whole section of my inner workings would be taken out (including gallbladder and ampula and duodenum) and then A would be connected to 1 and B would be connected to 2 and C would be connected to 3 (you have to see her awesome "Etch-a-Sketch" to get the whole picture - I have it on email if anyone is interested). The nitty gritty is that the incision for both surgeries would be the same - a vertical line from the bottom of my breastbone to just above my belly button. 10% of patients have a problem with their stomach "waking up" after the Whipple and have to have a feeding tube, sometimes for as long as one month following surgery. 20% of patients have a problem with pancreatic fluid "leaks" and have to have a drain. "Let's hope you're one of the majority who goes home without these complications," she says, and I wholeheartedly agree. She said she operates on Mondays and Tuesdays and that she usually schedules two weeks in advance. That helps me know when this is all coming. All in all, I feel completely confident in her abilities and her assurance of success. I trust her with my life - literally. Now, the question is - do we do the study where we have a 2 out of 3 chance that I will have the surgery (with or without follow-up treatments)? The timeframe is important here. If I decide to do the study, lab work will be done today - blood tests, urine test, and mental/physical forms filled out. Samples and forms will be sent to the John Wayne Cancer Center in California and evaluated with results to follow in about seven days. If all goes well with the screening and evaluations, I'll be placed in an "arm" of the study: surgery without follow-up treatment, surgery w/ BCG injections to follow, or best medical practices (which would be treatments before surgery). The best news was when Jennifer said that if by some chance I was put in the "best medical practices" arm and I really wanted to go ahead with the surgery, I could drop out of the study at that point, no questions asked. That made me very happy. I want to be a part of the trial because I think trials are important to help others down the road, but I also want this thing gone and out of me before much more time passes. To know that I could just say, "no thanks" to the trial, and go on with the surgery and whatever else Dr. G recommends was a relief. So, we got the ball moving. I peed in a cup, I bled into a few tubes to send to the John Wayne Center, and I filled out a questionnaire that asked me over and over if I felt anxious, angry, weary, depressed, confident, fearful, sad, compassionate, etc. etc. over the past week. I told them this was not a good week to ask me these questions since my cute mommy had broken her shoulder just a few days earlier! And I signed on the dotted line to participate in the MORD Trial (don't ask me what the acronym stands for - I have no idea!). I felt a spirit of peace, and that's what I prayed for. I don't feel pressure to do anything I don't want to do and I know that whatever I have to do, it will be the best for me. It's very reassuring.

Now, tonight is another ball of wax altogether. I'm totally drained from today's experiences and the whole past week of ups (sitting at the feet of the General Relief Society presidency and board was AWESOME) and downs (Mom's fall) and all-arounds (busy at work, taxes filed, filling out forms to apply for Disability...). I worked for a while, but I can hardly keep my eyes open. I am done. I'm going to bed. Wonder if I'll dream and what scary monster will visit me tonight...

(Picture: Grammy and Knox, who celebrated his first birthday March 28. I remember how grateful I was last March 28 to see him born and be with my Chelsea, just 11 days after major neck surgery. A miracle indeed...)

Tuesday, March 27, 2012

Slow Goin'

Tuesday, March 27, 2012: Yesterday, I called one of Dr. Grossmann's nurses, Carolyn, to see if she could answer some of the questions I have bubbling up inside me since we got the news on Friday about my scans. Normally, I feel quite comforted after I talk to anyone in Dr. G's team, but I'm feeling a bit frustrated with the rate of speed we seem to be taking with this whole process. I realize it's good to talk through options and get a good overview of the situation, but honestly, I've had these little "spots" since December and they worry me. I'm constantly urging my fighter cells to keep them contained and not allow them to spread, but it has been three months (at least) now and I just want them gone. I asked Carolyn about the meeting on Friday with Dr. Scaife, the surgeon. She said the main objective is to help me feel comfortable about the option of surgery, especially if I choose to go with the Clinical Study. Dr. Scaife will go over the procedure, including complications that may arise, "down time", recovery, so that after our discussion, I can better decide if it's worth it to do surgery first or start immune therapy first. Obviously, the hope is that immune therapy will shrink the tumors and allow for a simpler surgery, while at the same time killing any stray cancer cells. But, since my scans do not show any "stray cells" at this time, am I a candidate for a simpler surgery to remove these bad boys completely and then begin immune therapy? It feels like an out-of-control merry-go-round and all we're doing is talking about it. I asked what happens after I talk to Dr. Scaife, and Carolyn just said that I can call Dr. G's office & arrange for either a sit-down discussion or a phone visit. Could I schedule that right now? I need a plan. Today, it feels like there is no plan, just talking. I was wishing I could have surgery or begin immune therapy next week when J is out of school for Spring Break. That way, I wouldn't have to worry about getting her to and from school and she would be home to help me if I needed it. But, at this snail's pace we're on, that's not going to happen. I was also hoping I'd have the worst of the worst over and done with by the end of April when the chorus is singing Mozart's "Requiem". Can't say whether that's going to happen either. I really can't plan anything right now and that sends me into a tizzy. I need a plan. I really need a plan. I've got another phone call in to Karen, Dr. G's other nurse, to call me today, but I haven't heard from her yet. I'm so used to having these appointments and procedures mapped out throughout my calendar, and right now, there is nothing ahead but uncertainty. I'm sure there will be a day when I'll wish the brakes were on the speeding train, but I hate this crawling speed. Can we just get on with it already?
(Picture: Four of the Grands - Lachlan, Jane, Avery, and Olive - at the indoor playground last week. I cleaned my camera lens after downloading all these pictures. Every shot has a "ghostly" shadow over the left side of the frame. Hmmm, fingerprints, maybe?)

Monday, March 26, 2012

Ruts in the Road

Monday, March 26, 2012: I told my mom this past week that I've felt like I'm on a roller coaster. Work is keeping me busy - almost too busy - and I feel stressed when I can't work as much as I'd like to or feel I need to, for whatever reason. I've also been busy with church-related activities and chorus responsibilities, spending way too many nights away from home. Those are the ruts in my road. They "hang me up", make me stumble, make me tired, numb my euphoria over good news, and keep me from sleeping soundly at night. But, in spite of it all, there is always something to be grateful for and to smile about. That's what keeps my wheels turning through the ruts and helps me move ahead. Ahhh, the peace I feel when I pray. It's tangible and a necessity these days. I don't know where I'd be without it.

Saturday night was my night to choose where to go out for dinner. It was a toss-up between pizza (my all-time favorite food) and Cafe Rio (a close runner-up). With the help of my family, we chose Cafe Rio. It was busy and noisy, as usual, and we shuffled our way through the line to order our meals. Janessa and I were in front, then Mom, then Chelsea and Knox and Lachlan, with Dean bringing up the rear with Olive. I was standing at the pay counter, pulling out my dollars, when I heard Chelsea say, "Mom!" I turned around in time to see a strange man steadying Mom against the wall and asking, "Are you all right, ma'am?" All the cooks behind the glass were leaning over as far as they could and asking, "Are you all right?" and I could see that Mom was swaying, pale and in pain. I asked Ness what had happened and she said that Gram had fallen. "To the ground?" I asked in disbelief, and Ness nodded yes. I went to Mom and put my arm around her. The cooks were still preparing the meals and shouting their choices at her and she was obviously confused and disoriented. Somehow, we made it through the line, supporting each other, and got Mom to a table. We asked her if she was in pain and she said her shoulder really hurt. I asked Chelsea what had happened and she said that Mom turned to her in the line and said, "I think my foot has fallen to sleep." Chels was holding Knox and thought she should turn around and ask Dean to come help Mom, but right then, Mom tried to take a step forward and fell, her foot and leg completely numb. We asked Mom if we needed to go to the ER to get checked out and she said, "No, I think if I go home and put heat on my shoulder, it will feel better." We tried to eat - Mom took about two bites, I think - and realized that she was not using her left arm at all, but holding it near her body. Chels and I finally convinced her that she needed to go to the ER and she agreed, saying that the pain was getting worse. Getting up out of the chair was agonizing for her. She could walk okay, but lifting herself up and then setting herself back down in the car was tortuous. Chels drove her to the ER with Dean and Ness and I following behind. I stayed with her while everyone else went home with the kids.

In many ways, it was strange to me to be back at Lakeview Emergency where we assembled after Mom's collapse last September. A lot of the hard memories came back. How frightened we all were! I wasn't as scared this time, but I was sick to think that she might be badly injured again and not knowing what trials were ahead. She was teary. Even before we saw the doctor, she said that if she had to go through surgery, she didn't think she would make it. The nurses were extremely kind. We joked about the accident happening at Cafe Rio and "ruining a good meal." Her doctor was Dr. Linke Hebrew, a good no-nonsense guy. He knew Mom's primary doctor, Dr. Wesley Barney, and even asked her if he was the "old Dr. Barney or the kid Dr. Barney." He ordered an x-ray and sent Mom into a panic when he said that she would probably need to get into a gown for the test, since he couldn't see the x-ray going through "all those clothes" (Mom was wearing a sweater and a long-sleeved tee shirt in our beautiful 60-degree weather that day). She was given pain meds to get her through the hard x-rays. She was also given a blood test to see how her Coumadin was working. The x-ray tech was wonderful. In the end, after torturing Mom for several minutes, she let her lie in the hospital bed for the x-rays. When the doctor came back in, he said, "Well, you flunked the x-ray exam. I'm afraid your shoulder is broken." He went on to explain that it was broken in a "good way", that the bones were lying together perfectly and would not require any surgery. Mom was so relieved and grateful. While we waited for the results of the blood test, we had a bit of comic relief as we listened to the patient in the bed next to Mom's explain his cut hand to the nurses - "I got mad and punched the window of my car." Really? Ouch! When the blood test came back, the nurses and Dr. Hebrew were in a tizzy. Normally, therapeutic results are anywhere from 2.0 to 3.0. Mine was low just the day before with a score of 1.8, which meant that I needed to take a double dose of Coumadin for a few days. Mom's test score came back as 14-plus!! Her blood was like water in her veins! Dr. Hebrew kept telling her how lucky she was that she didn't break the skin because she might have bled to death right there. We showed him the nasty bruises that were already forming on her hands and arms where she tried to stop herself from falling and he said that her back and shoulder would probably look ten times worse. Poor Mumsy! She vowed and promised that she wouldn't take any more meds until Dr. Barney was able to check her out and give her a new test (and in fact, she stated that she wasn't going to take ANY of her meds for a few days - not sure how wise that decision was...)

She was finally put in a sling and discharged. She joked about sleeping in Dean's comfy brown recliner for the night and "could I just take it home with me?" Chels and I got her Loritab prescription filled and tried to get everyone settled down for the night. I did worry about her all night though and shed a few tears in my pillow for the pitfalls of this life. As my sister, Laura, said, "Life is so daily, isn't it?" Just when Mom was getting stronger and able to help me through my hard tests this week, she stumbles in one of those ruts and is sidelined for the next 6-8 weeks. So unfair! But, in the midst of our grumbling, we gained two positive outlooks from the ER: when Mom told Dr. Hebrew about her horrible year, he said, "Well, then, you're just getting this out of the way so you can have a bright future!" And as the nurse was going over her discharge orders, she told Mom, "Aren't you glad this happened on the LAST day of your visit and not your first?" I love those little bits of sunshine! Up and over the ruts we go! We are also counting our blessings that this accident didn't happen when she was alone at home or somewhere help would have been hard to find. Oh, how grateful we are that she is going to be okay. I know this will be hard for my little frail momma. She may feel like she is going backwards. But, I know she can get through this hurdle with her sense of humor and her faith and the love and prayers of her family. We have to keep fighting. We just have to. We will.

(Picture: Mom and I at the cemetery on Wed, 3/21...a pensive moment)

Friday, March 23, 2012

Scans & Results

Friday, March 23, 2012: I had my scheduled CT scans and brain MRI yesterday. Our appointment was at 6:00 PM, so spent the day worrying about it and praying mightily. A happy respite was lunch at Arctic Circle with Mom, Chels & kids, Linds & kids, RyLee, and Malyree & Briia. LOVED IT! So good to watch those little ones play together and get to love on all of them, big and little.

I had to start drinking the contrast at 4:30 and soon after that, we drove to Salt Lake to drop off Chelsea's littles at Aunt Kelly's house. Lachlan loves to play with cousin, Jace, and Lauren was excited to hold Knox and play with Olive. What a blessing to have their help! We made good time to Huntsman, arriving about five minutes to 6:00. One of the (many) negatives to having such a late appointment was that there was no free Valet Parking - boo! This is the first time we've had to actually park ourselves and take the elevator from Level A up to the 3rd Floor to Radiology. I filled out the paperwork (learned that tattoos - even for eyelashes and brows - can affect MRIs - wow) and waited to be called back. While we were waiting, a man came out in a wheelchair with a blanket wrapped around him and the nurse told his wife that he had "gotten sick and claustrophobic" and they would need to reschedule for another time when they could give him Valium to relax him and help him through the scans (or whatever it was he was having done that day). I felt so bad for him and so grateful that I've been able to get through all my scans with little or no problems.

It wasn't long before I was called back and Mom & Chels were left with their stack of magazines and Janessa's laptop to keep them busy through the wait. I was taken directly to the scan room - unlike other times when I've been taken to a side room to have the IV put in to wait longer. While I was lying on the scan table, one techician proceeded to try to find a good vein and explained that for the pancreatic protocol scan, a large vein was needed to allow for the contrast to come in "fast". She tried in two spots and couldn't get a good vein. In comes the other technician to try. She tried THREE times, and one of those times, she hit a tendon. OUCH!! That one hurt. Of course, every time they'd start, they'd say, "Here comes a big poke." No kidding. Finally, they called another technician to help and he came from the University Hospital. I had gone into the scan room feeling pretty good and not freezing cold like I usually am, but by this point, I was nervous and anxious and I needed that warm blanket they offered. My veins have been hard to access lately anyway, but one of the technicians said that the lateness of the appointment and the fact that I'd been fasting since noon didn't help at all. She said that if this was going to be something I'd have to do often, I should consider a port, and she also recommended that I always get these appointments in the morning. Believe me, that's what I would have preferred, for sure. "Paul", the U of U technician, arrived and proceeded to probe and feel for a good vein. He said, "You know, it's mostly a matter of luck, not skill. We all have the skill to do this, but sometimes it takes a bit of luck and I hope I have the luck to get this in the first try." Unfortunately, it was not to be. He tried a couple of times and wasn't able to get past the first (owie!) poke. One of the original technicians said that the only other thing they could think of was to have me go to the U of U ER, have them look at my arms under ultrasound where they could see the big veins, and have them put the IV in. She also said that it might mean I wouldn't be back to Huntsman in time for my MRI and that there was a possibility that I'd have to reschedule one or both of the procedures. It was awful. I couldn't imagine having already drunk the nasty contrast for nothing, been poked six or more times for nothing, and going out into the waiting room to tell my family that we'd have to reschedule. Just as we were checking with the ER to see how long a wait there was for me to be seen, Paul said, "Let me try your right arm one more time." I started praying. He poked and prodded, stuck the needle in, and for a minute I thought I was going to see him shake his head. Then, those happy words, "It's in." I could have kissed him! Thank you, thank you! With the IV in, the three CT scans - neck, chest, and pancreatic protocol - were done within about 20 minutes.

Then, on to the MRI room. I had to disrobe (which seems strange that I laid on the CT table fully clothed, but for a picture of my BRAIN, I had to put on the fashionable scrubs!) and taken to the scan room. I've had one other MRI (at the Salt Lake Clinic) and I remember the noise and being able to see the technician through the glass window as the test was performed. This time, she asked if I wanted to listen to music. YES! She put a pair of big, padded headphones on me, strapped me into a stable position, and on we went for the 35 minute MRI. Thank heavens for the music that (semi) drowned out the loud beeps and blasts of the test. Do they do that to monitor how your brain reacts to noise and stimulus? I'd really like to know, because at times, even the table rattled with the noise. I felt like I was in an earthquake! I love that the MRI is broken up into different scans, and the technician's voice would come through the speakers to tell me, "Okay, I'm starting the next scan and it will last 4 minutes," and so on, until the 35 minutes was up. Mom always asks me if there is ever any gasping, as the technicians watch their computer screens. No, thank heavens. They all seem to keep a good poker face at all times.

This morning, at 10:00 AM, I called Dr. Grossmann's office and talked to one of the receptionists. I asked if Dr. G or Karen or Carolyn were available to talk to me about the results (or lack of results). She said that Dr. G and Karen were both off today...of course. But, she said that she would transfer me to Karen's voicemail so I could leave a message for the person covering for her today. I left the message that I wanted someone to call me TODAY and let me know the results or when I would be able to get the results, as I (and everyone else) was very anxious about them. About noon, the phone rang and I saw "University of Utah" on the Caller ID. The person on the other end said that she had talked to Dr. Grossmann and he had seen the results of the scans. She said, "The scan of the neck is negative. The scan of the chest is negative. And the scan of the pancreas is negative." She must have heard the disbelief in the way I said, "really???", because she laughed a little and said, "Yes, Dr. Grossmann thought that was strange, too, especially since something showed up on the PET scan you had. But, there is nothing there now." Miracles? Yes. Answer to prayer? Yes.

She went on to say that he didn't have the "official" results of the brain MRI, but that he had looked at them and "in his eyes, they look normal." I trust his eyes. She said if there was anything different when the official results came in, she would let me know.

I have a lot of questions, like "what does this really mean?" I know the tumors have not disappeared - that would be beyond miraculous. But, if it means that they are nowhere near the pancreas, that means I would be able to have the "simple" stomach surgery and not the Whipple. It may determine a lot of the other unknowns, as well, such as further treatment.

My caller also said, "Dr. Grossmann wanted me to remind you that you have an appointment with the surgeon, Dr. Scafe, next Friday, March 30, at 10:00 AM." I didn't even know I had an appointment with Dr. Scafe, but that's okay. It's on the calendar now.

I am so relieved and a little disbelieving, but not in the miracles - just in what the miracles really mean. I know prayers have been answered. I know that fasting and priesthood blessings provided these miracles, too. I am so grateful. I am breathing much easier tonight.

(Picture: November 2, 2008, at nephew, Jeddy's, baptism in Washington)

Monday, March 19, 2012

Team Lisa

Monday, March 19, 2012: I had a great weekend. Saturday was a successful Scentsy Open House, even though the gale-force winds blew away one of my cute little signs - tore it right off its wire brace. I thought I had lost my new colorful one, but we found it in the field about a quarter mile away. Geesh!

Later, I went to the temple. It's always a good day when I can do that. Shed a few tears, had a few moments of heart-to-heart with my Heavenly Father, and hugged a few dear friends. The Spirit wrapped me in His loving arms and blessed me with some much-needed peace.

Sunday was another powerful day. The messages in our meetings were full of hope and encouragement to get us through this life journey. I was amazed at how they spoke to me on a personal level. But, why should I be amazed? God knows what I need to hear. He makes sure I get what I need, when I need it. We had a restful day, a good taco soup for dinner, and right around 7:00 PM, Aaron & Linds arrived to meet with Dean and Janessa and I for Family Council. With the magic of technology, we were able to sit at our dining table and talk - via Face Time - with Chelsea and Rob, too, 300-plus miles away. It was awesome. Aaron had asked me a few days ago if we could gather as a family to discuss all my treatment options and ask questions and get information and voice our opinions, and I readily agreed. It was truly a gift. And to be able to have Rob and Chels right there with us was an added bonus - their insights and questions were extremely valuable. Linds is the pro researcher - she's been gathering info online and sending out links, and we talked about her findings, as well as what I got from Dr. Grossmann. Everyone was given the opportunity to voice their fears and their hopes and their confusion and their understanding, and I think we made amazing progress. Where I once felt totally overwhelmed, now I'm feeling empowered with knowledge. I think I understand what the options are, what will happen if I choose a certain path over another, and how it will affect my entire family. I felt calmer when we were finished, especially after a heartfelt blessing from Aaron and Dean. I can't express how the support of my family lifts and carries me. I couldn't do these hard things without them. I am extremely blessed and so grateful. I've been blessed with peace that "all will be well", and I know it's true. We are an eternal family and I've never been as thankful for that as I am at this moment. Thank you, each and every one. I love you with all my heart.

(Picture: Dionne sent me an email this week and included this picture of her helping a baby calf. Love the sweatshirt! "No one has to do this alone...")

Saturday, March 17, 2012

The Moments that change Everything

Saturday, March 17, 2012: Today marks one year since my first surgery for melanoma. One year ago today, dear Dr. Bradley went into my right neck and performed miraculous surgery for nine and a half hours. Looking back one year, it is amazing to me how one moment changed my life forever, and how many more moments there have been in the last 365 days that have pushed and pulled my life in a different direction.

Janessa reminded me that we painted our toenails green for St. Patrick's Day last year. Boy, I could sure use a good pedicure today, whether it's green or purple or red or blue! That may have to be on the to-do list.

I had a good, no, a GREAT day today. I was surrounded by the sweetness of my yummy scent business and I got to visit with family, friends, and neighbors who share my enthusiasm for good "scents". I ate green-frosted cookies and green grapes for lunch and had a sweet potato with brown sugar for dinner. And then I spent two hours-plus at the temple. The comfort I received there tonight was like a salve on my little confused heart and mind.

I will be okay. I will be blessed. I will know what to do. I can do all things through God, even the impossible, for He knows me and loves me and is with me. Yes, a GREAT day full of GREAT moments.

{Picture: me and Britnee and baby due May 15 - Happy St. Patrick's Day)

Thursday, March 15, 2012

You are what you lean on

Thursday, March 15, 2012: I heard a song recently with the lyric, "You are what you lean on," and though I've forgotten the rest of the song, that phrase has stuck with me. I realize I "lean" a lot - don't we all? How else would we make it through the hard parts of life without falling flat?

I want to tell of one of the questions I asked Dr. Grossmann the other day, and I know by telling it, I might re-bruise tender feelings of my wonderful family. Forgive me for bringing up these memories, but I just had to ask because I've been worrying about it.

Throughout the past year, I've considered myself "lucky" that I haven't had to have chemo. (I should have knocked on wood.) Radiation was bad enough. But, quite honestly, chemo scares me. When Dr. G started talking about IL-2 and the side effects of this toxin, I wanted to put the brakes on and say, "Whoa, hold up there." I told him about my precious cousin, Larry, and his fight against colon cancer a few years ago. I told him how Larry made it through surgery and all the treatments that followed the first onslaught with courage and determination to live for his sweet wife and baby boy. But, when the evil C came back and he began the tortuous chemotherapy, we watched him waste away before our eyes. He was so vulnerable and it was so hard and it took more than it gave back until our brave Larry just couldn't fight anymore. I've just never been able to wrap my head around the fact that chemo is supposed to be a GOOD thing, when it's literally a poison. I feel great right now - why oh why would I want to have poison injected into my blood and get sicker than I've ever been in my life. Why?

Dr. G listened to my anguish and then gave me some comfort. He explained that cancers are not created equal and what works to kill one may not work to kill another. He said that the chemo used with colon cancer patients is different than anything I will be exposed to. IL-2 is toxic, yes. But, it will not (hopefully) make me so sick that I'll wish for cancer over another dose.

I think I'm afraid to lose hope. I'm afraid that I'll lose the desire to live. I'm afraid that I'll want to give up, and that just cannot happen. I have so much to live for. I have a beautiful, supportive family. I have a teenager that I want to see become a wife and a mother. I have grandchildren that I want to see go to college and serve missions and play basketball and write books. I want to get a puppy. I want to go to Hawaii. I want to eat fish & chips in Piccadilly Square. I want to ride the Pirates of the Caribbean at Disneyland again. I cannot be so sick that none of that matters. I refuse.

So, I'll continue to lean...on my Lord & miracles. I've done plenty of hard things before. I can do this, too. And if, like the lyric says, I am what I lean on, then I'm going to be stronger than I've ever been before and able to beat this beast.

(Picture: my "writer" buddies--Colleen, Janet, & Karen--at our annual Christmas brunch, December 2011 - friends that keep me laughing while I'm leaning!)

Wednesday, March 14, 2012

The Fuel to Fight

Wednesday, March 14, 2012: I'm taking a little break from work. I do transcriptions of call reports from people all over the country (and Canada!) and the company I work for just added a new client called InfuScience. Last December, we were lucky to see 100 minutes, total, in the system to be transcribed per day. On a good day, I can easily transcribe 100 minutes on my own. So, imagine that for the last two (or more) weeks, with the addition of this new company and several others, we've been seeing 300-plus minutes waiting to be transcribed - and the number hardly goes down, even after we've worked all day, because people continue to call in their reports. This helps with my paycheck, for sure, but it's also kind of overwhelming, especially when I log off at 10:00 PM and there's still over 200 minutes to transcribe in the system! (That's not really what I wanted to say in this post, but it's where my thoughts are...) So, this InfuScience deals with nurses and case managers who are coordinating in-home infusion care for patients being discharged from various hospitals. They talk about things like PICC lines and feeding tubes and IV antibiotics and how this particular patient isn't being discharged today because of complications, etc. I've just started doing these reports and with my current state of mind (or numbness of mind), I'm finding it very difficult to transcribe and stay detached. I ache for these poor patients being sent home with a feeding tube! I can't stand to hear that their discharge is being delayed another week! It's too close to the surface...thus, the need for a break. Any excuse will do...

I promised to tell you a few of the lighter aspects of my visit yesterday with Dr. Grossmann and team. I always take a written list of questions I want to ask, things that have bothered me or things I need to have clarification on. I also take Lindsey. She is a PRO at asking questions. Everything Dr. G says comes flying at me at break-neck speed and I have to absorb it a bit, chew it up, and then let it settle in my brain for a while before I can even begin to think of the why, where, when, what, or how. Not Linds. She absorbs like a sponge and out comes a question, a perfectly thought-filled question that hasn't even begun to take shape in my own head. Dr. G is always saying, "Now that's a good question and I'll get to that in a minute," or "Yes, let's go over that now, since you asked." Our meetings are always super-charged with questions and answers, and that's why I always leave feeling full to bursting, my head spinning.

One of the questions I had written down to ask yesterday seemed silly, but was weighing heavy on my mind. I've been feeling very guilty this past week, believing that every M&M and candy bar and donut and cookie I've eaten in the past few months has gone straight to the stomach of these little melanoma beasts, fueling their growth and speed to multiply and dominate. I've been afraid to eat anything sweet and sugary, for fear the next scan would show a huge tumor. So, I asked Dr. G if he believed there was any correlation between refined sugar and the growth of melanoma. He simply smiled and said, "I answer this question all the time, and no, there isn't any correlation. In fact," he said, "I think eating ice cream is a perfect way to reduce stress." WHAT?? Did you hear that, Mumsy? You've been right all along! We laughed, but in all seriousness, he said that people who start eliminating foods from their diet that don't really have to be eliminated have a harder time going through treatment and healing because their bodies react to the sudden change and try to compensate in other ways that may not be helpful. He said there must be moderation, of course, but sugar is a fuel that keeps us going & keeps us fighting.

I ate a Girl Scout cookie today in honor of the fight.

(Picture - Fall 2008 at Thanksgiving Point for the Pumpkin Fair - I love my family!)

Tuesday, March 13, 2012

Hard and Harder Choices

Tuesday, March 13, 2012: It's late. I've been home from chorus rehearsal for about a half hour now. D and J have gone to bed and I want to join them, but I knew there would be some anxious people out there wondering how this day went for me. In one word--overwhelming.

I dropped J off early at good friend Carol's house and Linds & I were at the Huntsman Center by 8:15. Dr. Grossmann passed me while I was checking in at the reception desk. "See you in a minute," he said. Things started out well - I only had one needle prick to get blood drawn today. Easy-peasy. We hardly had to wait in the exam room before Nurse Carolyn came in to check me over. Linds & I were surprised to see her. She's been AOL for a few months now, so we were happy to know that she's still around. She felt my neck and I have to admit that it's a strange sensation, kind of like when you hit your funny bone. Those poor nerve ends are ultra-sensitive and just tingle when they're touched.

Dr. Grossmann and Nurse Karen came in soon after. Dr. G pulled his rolling chair right up next to me without hardly any "small talk", and the discussion that would affect the rest of my life began. And without watering it down at all, he declared that I was now a Stage IV melanoma patient, which really knocked me over. I've been re-staged and it really stinks.

I'm a person who loves details. I remember telling my missionary son once that a letter home was not complete without a multitude of details. I know there are people reading this entry right now, thinking to themselves that they want details too, especially about something important like this. But, I have to be honest. I am overwhelmed with the amount of information Dr. G gave to me this morning. I was also disappointed - I wanted to go to this appointment and have him say, "Here is what we've planned for you. Report to duty immediately." Instead, he gave me a bucketload of info and said, "Now, go home and sleep on it and then let us know what you've decided." I can't handle that much free agency!! So, over the next couple of days, as I digest (and throw up!) some of these hard, HARD choices, I'll try to give more details here. For now, here's the skin & bones...literally...

I have Stage IV melanoma. I have two little tumors near my duodenum that may or may not be pressing up against my pancreas. The first thing that must be done (and this was already decided, thank heavens) is to have a "pancreatic protocol" CT scan done. This scan will be able to tell the doctors if the tumors are easily removable or will require extensive surgery and reconstruction of part of the bowel, stomach, and pancreas, a procedure called a Whipple. (More words for your medical journal...) This is not a surgery for wimps. If you Google it, prepare to be depressed - I was. There's the first thing to pray for, that I won't have to have the Whipple. Second, I have to have a brain MRI to make sure the wicked melanoma has not sent his "cousins" there to live. I'm pretty confident this will be clear, but more prayers wouldn't hurt on this one, either. After those two things are done and checked off, then comes the big, BIG decisions.

Do I have surgery right away? Dr. Grossmann recommends it. Depending on that CT scan, I'll either be in the hospital a few days (simple, non-pressing tumor) or a week (more difficult with Whipple added in) and then about six weeks recovery. Scans follow recovery to make sure the beasties are all gone. OR...

Do I start on immune therapy? The new drug is nicknamed IL-2 (pronounced "isle-2"). It requires a Monday through Friday hospital stay, during which time 7-12 doses of this toxin are injected through a PICC line. I'm sick, but I'm in the hospital, closely monitored. On Friday, I go home, and after three days, should be feeling pretty normal again. However, the following Monday, I go back in the hospital to receive the second round of IL-2 until the following Friday. Then, I go home for five to six weeks...and have another scan. OR...

Do I enter a trial/study? This study is to determine if it's best to have surgery first or do immune therapy first. I would be randomly selected to go into one of three groups: A) surgery without follow-up drugs, B) surgery with a follow-up "investigational" drug, called BNG (which is used now on bladder cancer patients and people with TB, and which investigators would love to develop into a vaccine against melanoma), or C) best medical procedures (which would include all the things Dr. Grossmann would like me to do anyway). I know you're confused - me, too. I guess it will all boil down to whether I want a computer to determine what path I'll follow for a while or whether I'll make those decisions on my own. I think you can probably guess where I'm leaning, but I can't totally dismiss the trial, either. It's called a "study" for a reason. Should I be a small part of making sure we eventually find a cure - even a vaccine - against this ugly disease? My head is in a whirl.

Maybe I've given too much information, too many details. I want the Spirit to lead me. I want Him to tell me what to do. I want to feel good one way or the other about what's best for me and my family. It's a very hard choice that will not only affect me - it will affect everyone I love.

The CT scan/brain MRI are scheduled for next Thursday, March 22. Once again, my insurance company will make me w a i t... But at least I don't have to make a decision until then. What to do?

Check back tomorrow (or the next day). I'll have a little more uplifting news from today's visit then. It wasn't all gloom & doom. I did laugh a couple of times! But, my oh my, this information is weighing heavy on me right now...

(Picture: me in "hippy gear" after a Symphony Chorus gig at Deer Valley, where we sang, "Let the sun shine, let the sun shine in, the sun shine in..." by the Fifth Dimension... Peace, man.)

Friday, March 9, 2012

Here we go again

Friday, March 9, 2012: Yesterday about 5:00, I was busily typing away for work when the phone rang. Caller ID said it was an "unknown number", so I ignored it. Later, after I finished the call I was transcribing, I checked to see if there were any phone messages. There was one.
"Hello, this is Dr. Adler for Lisa. I have your test results and would like to discuss them with you. Call me back when you can." Of course, I hurriedly dialed the number he left and it went to a voicemail for his nurse. Needless to say, I worried and fretted all night, even though I already knew what he was going to say. My stomach was in a knot and I really felt the same way I did one year and 2 days ago. How could that be, after all I've gone through? You'd think I'd have tougher skin by now - or at least a less rumbly tummy...

This morning, I woke up about two minutes before my alarm clock went off. I laid there with my eyes wide open in the dark and filled my head with all the "what ifs". I was making myself crazy-sick. I got up, waited until the standard hospital starting time of 7 AM, and started calling all the numbers I could find for Dr. Adler. More voicemails. I knew I'd soon be leaving to take my girl to school, so I pleaded with the ears listening to the messages to call my cell phone if I didn't answer my home phone. I was home again by 8:15 - a record, I think - and sure enough, there was the University of Utah Hospital phone number on my Caller ID again. I called and left another message. Finally, about 8:45, the phone rings and it's Dr. Adler. "The test results came back and it is metastatic melanoma."

Okay. Now what?

Dr. A asks if I already have a follow-up with Dr. Grossmann. I tell him, no. He says to call his office right away and make an appointment. After I agree to do that, he says, "I'm very sorry. We were all hoping it would be something different." Something different... like what? A little inflammation? A little infection? Just something...different... Yeah, me too.

I call Dr. G's office. Marilyn answers. I know these receptionists personally now, even though I'm just one drop in a bucket to them. She listens to my request and says they can get me in on Tuesday, March 13, at 8:30. I'm relieved. I write the appointment in my medical calendar and it seems so unreal to be starting all over with a new spot. Yep, here we go again.

I've got those old feelings back, too, like not being able to eat. It's funny how your body reacts to "bad news".

After I pick up my girl from school, we go to the grocery store. I usually try to shop on Friday mornings after I take her to school - the store is less busy and it just feels good to have it done before everyone else remembers that they need their weekly groceries. Not this morning. So, there we are in the aisles of Dick's Market, where we're slowly making our way to the bakery for their yummy glazed donuts, when my cell phone rings. The number looks slightly familiar, so I answer it. It's Karen, Dr. Grossmann's nurse. She asks how I'm doing. I'm okay, I say. She says that since they got the news this morning, they've been talking about me - Dr. Grossmann and Dr. Antebacka (not sure how to spell it, but I'm sure I'll know soon enough), who is a melanoma surgeon, and the rest of the team. She asks if my ears have been burning and I laugh. She asks if I have any questions she can try to answer before I come in on Tuesday. I ask her something I've been mulling over since Wednesday - what's the difference between a lesion and a tumor? She says a lesion indicates an "undefined mass" - not a node or a tumor, but something that needs further evaluation. There in the bread aisle, I ask her how extensive the surgery will be, and she can't answer for sure. She reassures me that we'll go through all that on Tuesday when we discuss treatment and that Dr. Antebacka's expertise will be at hand. I feel better after I talk to her, like she's one of my friends calling to make sure I'm okay. And I am, I really am. I'm just a little frightened about what lies ahead and how many times I may have to start over from Day One again...

I have not lost hope. I'm just mad at melanoma. A good friend was surprised that melanoma can exist in places that never see sun. Seems very unfair, doesn't it? Unfortunately, metastatic melanoma can sneak its way into lots of weird places, and if I knew what makes it land and stick, I'd do my best to blow it out of the water. As it is, I only know to keep taking my supplements, eat those super cancer-fighting foods, and pray. Pray for miracles and hope, every day. I hate this thing that is taking so much time out of my life and choice out of my future. But, I can still choose to fight and I will. I'm determined to get these "lesions" cut out and burned up and be back to my normal self as quickly as possible. Again...

(Picture: Grammy and Avery in 2008 - look at that darling white-haired baby and that unscarred Lisa neck...)

Wednesday, March 7, 2012

Listening In

Wednesday, March 7, 2012: (One year since my initial diagnosis of melanoma)
Today was the long-awaited endoscopy/biopsy procedure with Dr. Adler at the Huntsman Center. After a terrific snowstorm last night, I thought today might be a repeat of our adventure one year ago when I found out I had melanoma AND had to drive home from the clinic in a blizzard! (Actually, I was too distraught to drive - my sweet Aaron did the driving that day.) Lindsey and I arrived at Huntsman to a crowded waiting room of other cancer patients getting endoscopies, colonoscopies, and surgeries performed. We always wonder what their story is. I was smart and wore a coat and a sweater this cold morning to make the IV poke a little easier, and the wonderful nurse, Emma, who took me back to the prep room, swaddled both my arms in warm hospital blankets right off the bat. It did help, but I still had to have two pokes when the first one in my right hand didn't work. This endoscopy felt more like surgery than the other two I've had recently - I had to lay on a gurney and be wheeled to the procedure room, where before I've walked to the bed where I'd be examined. That was a little nerve-wracking. Very kind nurses and technicians helped me through the "hooking up" process and then Dr. Adler appeared, saying, "Is this the famous Lisa Boynton?" I don't know about that, but I guess I'm becoming somewhat of a regular around the place. He explained the procedure and added that even though he hadn't seen anything on the other two endoscopies, "Dr. Grossmann must be very worried about this." That was surprising to me because I've felt all along that if Dr. G was worried, he would have insisted the procedure be done sooner. That kind of threw me off kilter for a minute. The wires and monitors were hooked up and the sedation nurse said, "Good-night. Have a nice dream." I was out.
Then something happened that was totally new from the other two endoscopy experiences. In the first two procedures, I went to sleep and woke up in the recovery room. This time (and I have no idea how long after I went to sleep that this happened), I could hear Dr. Adler talking to the technician. My eyes were closed and I was "asleep", but I could hear him explaining things about the procedure. In this semi-dream, I was writing down everything he said in a notebook. He would say something and I'd scribble it down. I know I wrote down a couple of pages worth of notes, but the only thing I clearly remember him saying was, "This looks like melanoma." In that state of semi-consciousness, I remember thinking, "Really? It's not pancreatic cancer? How interesting." I don't know how long I listened in, but I truly wish I could remember the entire conversation. I've got it written down somewhere!
I was in no pain. I couldn't feel anything. I was unaware that anything was down my throat. I could only hear Dr. Adler's voice (and sometimes the technician's voice), and then in a moment, I heard the nurse say, "Okay, Lisa, we're all done. You can wake up."
It was so real that I don't think it was a dream. I think I really could hear him talking. I didn't say anything to the nurses or to Linds, but when Dr. Adler came into the recovery room to talk to the two of us, I was not at all surprised when he said that he had found two "hypoechoic lesions" (hypoechoic literally means that it does not bounce back sound waves in an ultrasound very well, which generally indicates an unknown mass or lesion) that were "essentially on top of each other." The larger one measured 2.4cm and the smaller measured 1cm. He had taken three needle passes for biopsy, aspirating both lesions, and that "it looks like melanoma." I even asked him, "It doesn't look like pancreatic cancer?" and he said, "No, it looks like melanoma." After that, the nurse came in to get me ready for discharge and asked if the doctor had already talked to me about what he found and what he thought and I said, yes, and that I already knew what he was going to say because I had heard him talking during the procedure. She was fairly amazed and said that I must have been waking up a bit - and that if I ever had a procedure again to tell the sedation nurse of this experience, that they might have to "up" the dose to keep me under. I didn't see it as a disadvantage; in fact, I think it was a blessing. Hearing Dr. Adler's own voice say, "It looks like melanoma" before actually seeing him speak the words prepared me for what was coming. I wasn't surprised when he said what he did and I felt comfort knowing it was not an unknown cancer that I haven't dealt with before. Melanoma almost feels "normal" to me in a way. I know it's part of my life now, I know I'll have these wonderful melanoma specialists to help me every step of the journey, and I know I'll be okay. I feel blessed that it was found at such a small stage and that he referred to them as "lesions" and not "tumors". I already know that I can handle surgery and even radiation, if need be (and I hope not), but I'm not sure how I would handle chemotherapy if this had been a totally new type of cancer. Of course, the results are not all in. It could still be something else, but Dr. Adler was pretty convinced that this "looks like melanoma."
Now, more waiting... I'll keep you posted, as always. And thanks for the prayers. He was listening.
(Picture: Christmas 1972 - me with Troy and Dionne and our dog, Frankie - happy times!)

Tuesday, March 6, 2012


Tuesday, March 6, 2012: I've had a good couple of days. I saw an old friend Saturday night and she almost didn't recognize me. She even called me a "hot babe" - ha! She knew my story and knew that the "diet" I'd been on was a forced diet caused by radiation effects. When I told her that I was starting to gain weight, she just said, "Good! That means you feel better!" Yep, it's a double whammy. I'm glad I can eat...I just need to eat better and healthier.

When we first started chasing this "hot spot", I felt like I had done something wrong to cause it. My biggest worry was that sugar was the culprit. I still feel that way and I know that I need to get rid of it in my life. Easier said than done, though. I love goodies. I'm a sucker for all the bad things - cakes, cookies, licorice, M&Ms - you name it. I just need to psych myself into giving it all up. But, wow, it's a hard choice.

Dr. Grossmann suggested that I read "The Sonoma Diet", which is the "way of life" he follows. It sounds so wonderful and healthy, replacing candy and cake with blueberries and strawberries and grapes. My wonderful cousin also suggested I read "The Anti-Cancer" book, which also advocates eliminating sugar and eating more veggies and fruits and the Super Foods. I have all these great books with advice and council - now, I need to follow the rules if I'm really serious about fighting this cancer-beast.

I also saw Dr. Robison this week, the dermatologist who first examined me after my initial melanoma diagnosis and took the biopsy from the top of my head. It's been a year (tomorrow) since that horrible, fateful night, and though I'm sure he doesn't remember it like I do, he saw me yesterday and was absolutely amazed at how "great" I looked. He was full of compliments and told me to keep doing whatever I was doing, because it was working. He examined me from head to toe again and couldn't see anything suspicious. He continues to be amazed at how someone like me, who is pretty much "mole-less" and doesn't exhibit a lot of sun damage, can have melanoma. Just "lucky", I guess. It was very encouraging to talk to him because he was so positive about my year's journey. It was a Good News visit.

Yesterday, I also got the reminder call from Huntsman about my endoscopy/biopsy tomorrow morning. The girl told me what time I needed to be there and where I needed to be. I then asked her if there were any special instructions I needed to follow, since I remembered that I wasn't supposed to eat or drink anything right before the procedure. She said, "Oh, yes, let me check on that." Soon she came back to the phone and said, "Yes, you're supposed to be on a clean liquid diet all day Tuesday (which is today) and then no food or drink after midnight." Really?? I was skeptical, but accepted what she said. Later, I told Dean that I almost feel like she thought I was coming in for a colonoscopy instead of endoscopy - I've never had to do the clear liquid diet before! It could have something to do with me also having a biopsy done, but really?? Also, she didn't say anything about going off my blood thinner meds, although I did that on my own, stopping last Saturday. It just makes me wonder if they really have it all together there. If I hadn't specifically asked, would she have said anything? Probably not. The differences in the preparation before these procedures from the U of U Hospital and the IMC Centers where I've gone before is like night and day. IMC would contact me days in advance and even send me things in the mail to make sure I had all the proper instructions. I feel the U of U isn't quite with it. So, I'll probably make an issue of it tomorrow and let them know that I'm a bit confused. It certainly doesn't make today any easier - I'm eating jello and Popsicles and drinking apple juice & cranberry juice and beef/chicken broth. Blah... Maybe this should just be my "giving up sugar" start. If only I didn't have those Girl Scout cookies and M&Ms in the pantry...

(Picture: at Bear Lake in August 2011 - me holding baby Knox and my mom snapping pictures. This was only a week before Mom's heart stopped and she had to be resuscitated - twice. Keeping my skin safe under the umbrella in the hot, summer sun...)