Friday, April 19, 2013

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.

Thursday, April 11, 2013

Times & Seasons

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

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

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

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

Saturday, April 6, 2013

Early Morning Catch Up

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

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

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

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

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