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.