Anxious (an understatement)

Friday, April 20, 2012:  It's been a week since my last post.  Honestly, I've thought about posting every day and have even had it on my "to do" list all week.  It's been a stressful week for me because I've had to do things I hate, like deal with finances and paperwork and documents and decisions and the big bad Unknown.  Still trying to refinance our mortgage.  Enough said.  Not enough money in our bank account.  More than enough said.  Pre-op appointment.  I'll just say blood work and EKG that may or may not have been accurate, and that's all I want to say.  Scary stuff.  The surgery is looming closer and I am anxious.  Those voices in my head keep whispering, "what ifs", and I don't like it to think about that.  Every new twinge makes me wonder how much this beast has grown in all the waiting.  I even worry that my few extra pounds this week are due to all the Easter candy I've consumed or a tumor the size of a softball.  Talking to the nurse about my surgery concerns only reminded me that I've been down this road two times too many in the past 13 months.  I think about coming out of anesthesia and looking at the clock to see if I've been out three hours or eight.  I worry about my family, sitting in uncomfortable waiting room chairs, only to get the bad news that they'll be there many more hours.  No wonder my tummy is tied up in knots and the tears are close, whether I'm dealing with loan requirements or disability requirements or ten new bills in the mail or one more person asking how I'm doing.  To top off this stress, I freeze and burn at night.  I go to bed cold, with socks on my feet and long-sleeved/legged jammies, only to wake up too hot.  I throw the covers off and imagine the trapped heat from my body floating to the ceiling in giant waves.  Five minutes later, I'm cold again and back come the blankets.  I should be grateful I don't wake up drenched in sweat, like some my age.  But, dang it, did menopause really have to decide to give me grief NOW?

In spite of all this anxiety, I am blessed.  I read this scripture yesterday and it was a ray of sunshine.  "Search diligently, pray always, and be believing, and all things shall work together for your good."  ALL THINGS, working together.  He doesn't just say SOME things or a FEW things - He says ALL.  All the silly things I'm worried about will work together for my good.  I'm surrounded by people who are praying and believing and doing things to help me - you know who you are and I love you.  He is there, too.  He has given me a little rain, a little sunshine, a little flower, a little ballgame distraction last night, a little patch of green grass for my backyard in the coming week, and a whole bunch of hope.  I cling to that.  It will help me fly over this bump in the road.
(Picture:  Dad and Mom and me one lovely Sunday afternoon...)

Friday...at last

Friday, April 13, 2012: Today, I'm thinking about my sweet father-in-law, Calvin. This would have been his 92nd birthday. Happy Birthday, Dad! You are a treasure.

This has been a killer week. Now that it's Friday, I look back and think, well, why was this week any harder than another? I have to believe that part of it was having the alarm wake me up every morning at 5:50 AM after a glorious "sleeping in" and waking up on my own at 8:00 time during Spring Break last week. I am just plain TIRED. Another reason is that I've had a few projects that have kept me hopping all week. And looking around my house, it certainly did not involve cleaning! What do I do all day? The list grows ever longer, especially when I've started making a list, called "Things to do before Surgery"...

I'm sad, too, that I haven't been able to work as many hours as I'd like to do. We need the money, and it's frustrating to see transcribing that needs to be done and dollars that could be adding up, and yet, I don't have the time or energy to do it. Tonight I was able to do my best work all week. After five days of puttering, I was finally able to sit down and crank out the calls. Now, I'm wondering if I should do some tomorrow. Ugh. If only a rich fairy godmother would shake her wand in my direction...

Part of the "to do's" on my lists this week involved looking things up on the Internet: we want sod for the backyard, Dean wanted to get registered to vote, Janessa wants to take a required computer class online this summer, we're booking a room in Las Vegas for the Scentsy convention in July, we want to go to Sea World in June, I'd like to trade my couch & love seat in the office for a day bed, I've signed up to join the community garage sale in May, we wanted to refinance our mortgage, I needed landscaping ideas, I opened some new online Bill Pay accounts, I looked at a few classified ads for PUPPIES, I checked what foods I should be eating to kill cancer and what foods I should not eat to keep my blood in a good range of thick versus thin... and added to all that, I like to keep a watch on some of my favorite blogs: Alisa with Stage IV melanoma who is undergoing IL-2 treatments, NieNie with her brand-new baby girl and her new book on sale, Cindy and her changing world from rock to forest, Crystal and her sweet boy's struggles against leukemia, etc. etc. etc. My brain is absolutely mobbed by information. I remember that in my meeting with Dr. Scaife, she said, "People know as much as doctors these days because they can look up everything on the Internet." It's true. And I think I would rather be ignorant about a lot of the medical stuff. Sometimes I think I would rather not know that Alisa found a new lump near her spine. I think I would rather not know that one cancer patient refused radiation & surgery and lived, while his brother-in-law went through chemo & surgery & radiation and grew so weak that he died. I think I would rather not know that Dean has a "sunspot" on his chest that needs to be checked by the dermatologist. I think I would rather not know that hearts can stop during surgery. I think I would rather not know that the pancreas does not like to be touched and will rebel if it is. I even think I would rather not know that avocados and broccoli and asparagus (all of which I've eaten in the past week) are NOT good for someone who is on blood thinners.

Still, it is kind of nice to know where we can buy sod for a good price and how long it will take to drive to Sea World. It's nice to know that we can refinance our home online now (even though it's still nerve-wracking!) and that I can buy some of my new favorite tunes to download on my phone for my morning walks on the Legacy Trail. That's what I've been doing this week, downloading STUFF into my brain and convincing myself that it's all for the better good, when really I should just take a few more calls, drink a cancer-fighting smoothie, and have an afternoon nap.

Happy Friday...

(Picture: Calvin and Janice, Dean's mom & dad in about 1945-46, probably about the time they became engaged. How sweet is that?)

Good News Day...again

Monday, April 9, 2012: Big shout-out to my wonderful son, who celebrates another birthday today. Dean and I were talking last night before falling asleep that it seems like yesterday Aaron arrived and changed our lives. He was such a good, calm baby and a happy, smart little boy...and now he's a loving, hard-working, creative, GOOD man. I'm so proud of him. I love you, Aar. You made me a mommy first, and that's the best blessing I've ever had.

The big GOOD NEWS is Aaron's birthday. But, I also just heard from Joanna at Dr. Scaife's office and she has set a surgery date for me. It's Tuesday, May 1. I wish-wish-wish it was sooner, but I'm just happy to have it written down and set at last. I'm nervous about these little cancer-beasties growing and causing havoc, so every day I pray mightily that my body will continue to kill and fight and protect. She said she will talk to Dr. Scaife and see what pre-op things I need to have done (more blood work, possible EKG and/or chest x-rays, etc.) and then, she'll call me sometime this week to set that up. You know how I love a plan!

Easter weekend was warm, sunny, and hope-filled. We spent time Saturday with our darling "B" grand-girls, coloring eggs and having an egg hunt, and I loved every second of it. Sunday was a spiritual feast, testifying of our Savior's atonement and resurrection - He is the Hope and the Light of the World! Had a dinner/feast and ate too much, but truly enjoyed being with and talking to my family and having my cup overflow with love. I am a lucky girl.

(Picture: Aaron with his "Cookie Monster" cake - age 3)

And the Computer's Choice is...

Friday, April 6, 2012: Today, I received the news we've been waiting for all week. Jennifer from the Clinical Trial Department called (while I was sitting in the movie theater watching "Titanic" in 3D) and left me a message that I had qualified for the MORD Study, but I had been randomly selected to participate in the "Best Medical Practices" arm, which was the only one of the three arms that I did NOT want to do (it involved treatments first, perhaps surgery later). I called Jennifer when I got home and talked to her about this turn of events and that I was disappointed that I hadn't been chosen for one of the "surgery first" arms. She agreed, saying that she, too, wanted me to be able to have surgery first, since these tumors look to be completely "resectable", meaning that Dr. Scaife is certain she can remove them in their entirety and leave me NED - No Evidence of Disease. She asked me if I wanted to take the weekend to think things over and I told her that I'd been thinking about this for over a week now; I was ready to make decisions. "How do I move this forward if I definitely want to do surgery first?" I asked her. She replied, "You simply tell me that you want to withdraw from the study, and then you make an appointment with the surgeon." It was that easy. She said she would let Dr. Grossmann and team know of my decision and that they would be contacting me for a follow-up after my surgery. I called Dr. Scaife's nurse, Joanna, and left her a message that I was ready to schedule my surgery and if she could please arrange it, as soon as possible. Since it is Friday and I called about 4:00 PM, I'm hoping to hear back from her on Monday. At that point, the surgery date will be arranged, and we're all hoping it will be around the last week of April, if not sooner. I'm glad we know the outcome of the "computer's choice" and that I was given the option of accepting or declining participation in the trial. I feel at peace with this decision and was very encouraged by Jennifer's response, "I would do the same thing if I were you."

I feel the power of prayer. Even though the randomization was not what I had hoped, I feel that God has led me to this point and will continue to lead me along. I continue to pray for the simpler surgery, the shorter hospital stay, the quicker recovery. And if all the bad bugs would just disappear, I'd be one happy chicklet.

Happy Easter...

(Picture: Passey kids at Easter in 1978)

Canceled

Tuesday, April 3, 2012: By the title of this post, many are going to think something big is up, but it's not really. No, everything is still on - still waiting to hear about the surgery and the trial and all the big things coming up in my life. But, today I did something I didn't ever think I'd actually want to do - I canceled a follow-up appointment with the doctor who has been with me from the very beginning of this journey, my wonderful Dr. Josh Bradley. There was a time, about six months ago, that I was petrified I'd come to the end of my association with Dr. Bradley. He literally saved my life with the initial biopsy and diagnosis and neck resection, and he's been my hero ever since. So, I think he's extended our follow-ups and check-up visits longer than he really needed to, just to give me the reassurance I've needed all these months. A few months ago, I got a simple earache ,and being the Super-Hero Ear/Nose/Throat doctor that he is, he treated me, cleaned all the junk out of my dry, flaky, radiation-burned ear canal and has continued to "follow-up" every six to eight weeks or so, just to make sure all is well. I knew I had another appointment with him coming up next Monday morning, and in light of all the other appointments I've had - and WILL have in the next few weeks - I've had a nagging feeling that I should save a few "co-pay" bucks and cancel the appointment. I've waffled back and forth for a few days, saying, "No, I should go and tell him the latest developments," or "Yes, I should cancel since I'm really fine from the neck up!", back to "No, I want to keep seeing him..." Finally, today, the "no's" won. I called and canceled. Part of me feels that this is the end of the initial phase of my diagnosis, the sort of "innocent" phase, when I needed Dr. Bradley to lead me by the hand and be there for every next move. That's why this is so hard. It means I really have to "grow up" and be a big girl. I have to come to grips with the fact that there isn't much else left in the neck to cut out and I'll probably always have the dry, itchy ear canal on the right side. It means I have to move on to the "bigger guns" - the more serious oncology docs, the more scary procedures, the tougher statistics, the higher chances of relapse, the cursed scans that are much too sensitive and unforgiving. I've moved from Primary Care to Specialist, and that has its own pros and cons. I feel like I've lost part of my team, one of my arsenal of caregivers, who has cared and given so much to me this past year. I hope I did the right thing. I'm not so sure tonight...

(Picture: Lisa, Aaron, Ally, Lindsey, Avery, Janessa, and Dean at the Passey reunion at Bear Lake, 2008)

Fortune Cookies

Monday, April 2, 2012: I had a wonderful, relaxing, spiritual, cup-filled-to-overflowing weekend. The wind blew hard most of the time, so I stayed hunkered down in my comfy house to watch conference and be guided and motivated and lifted and strengthened by the Spirit. I feel TONS better today than I did last Friday night, when I crawled into bed exhausted from the visit with Dr. Scaife and all the decisions made. I'm at peace with my life and eager to get onto the next phase, whatever that may be.

I did have to go back to Huntsman today to get more blood work done. (Long story short, the trial study clinic where my blood was being shipped for the evaluation process was closed Friday & Monday to deliveries, so had to overnight NEW blood to arrive there in the morning.) My favorite phlebotomist, Kirk, was there to do his magic. He wrapped a warm hospital blanket around my left arm for about five minutes and then went in for one stick that filled up about five little vials with my good blood. Bless him! Jennifer, my trial counselor, was there to make sure he got all the paperwork, and as I finished, she gave me some good news. She said that even without these blood samples, the trial clinic let her know that "things look good" for me to be accepted into the study. Then, she said that she would probably be calling me in the next couple of days with the results of the randomization. I was pleasantly surprised that things were moving more quickly than we thought they might. Keep it up, guys! I'm anxious to get some solid dates scheduled.

We're on Spring Break this week, so J came to the Cancer Center with me. It's the first time she's been there, so it was good for her to visualize where I spend all my time lately. The blood draw was so quick this time, she barely had time to get her approval for the hospital's WiFi on her iPod. As we were leaving the parking lot, she told me once again that she actually likes being in hospitals - that she feels safe there and loves how quiet and peaceful things seem. People are busy, but they're busy doing GOOD. She said she also likes feeling somewhat unique because most of her friends have no idea what goes on in hospitals. I'm glad she feels it's a positive that she knows what she does at her age. It makes me a little sad, but she's okay with it.

Tonight, I finished my application for Social Security Disability benefits. If they only looked at my medical records and history of surgeries & treatments & doctor visits & tests, I'd probably have a good chance of being accepted. But, if they interview my family and friends about whether or not I have the ability and energy to work, I'm afraid it would be declined. Right now, at this moment, I feel great and I do have the energy to work. But, I worry for the future, when I'm spending days and weeks in the hospital recovering from operations or going through treatments, as the bills continue to add up. We'll see what happens. I guess "Stage IV Metastatic Melanoma" is on the list of conditions for which one can apply for Disability benefits, so that's why I'm giving it a go. I worry about not working, so it would be such a blessing if I didn't have to worry about it so much.

We had Chinese food that other night for dinner (when it's J's choice, that's what we can expect). My fortune cookie said, "You will enjoy good health and financial independence." Hallelujah! Let it be...

(Picture: Grammy and Olive, March 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...)