Friday, July 26, 2013

July's Lazy Daze

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

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

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

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

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

Thursday, July 18, 2013

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. 

Tuesday, July 16, 2013

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...

Tuesday, July 9, 2013

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.