"Is Chemo Really Finished?"

"So I'll take my life back now...thanks!"

For sure...Nicole is ready to take back the life she loves - teaching, laughing, cooking, church assignments, family activities, travel. The tenth and final chemo treatment ended Thursday, August 19...not a moment too soon! She has a PET scan tomorrow to see how much the tumor has shrunk after this extremely rigorous three-month treatment.

After that, the oncologist and radiation oncologist will discuss a likely schedule for radiation - which may not begin for several weeks. As Nicole says, "Radiation is a breeze compared to chemo!" She can live her normal routine while getting "zapped" according to a the prescribed treatment. Sounds terrible, but she assures us that compared to chemo, "it's a piece a' cake!" Thank you all for your love, encouragement and help, for seeing her, and all of us, through this third and most miserable lymphoma cancer treatment with its erratic side effects. It's been a long, tough road! We couldn't have done it alone.

"You are really doing very well."

During the third week of July, Nicole and Frank met with her oncologist to discuss the results of her PET scan and chest CT scan.

The results were encouraging...and so was Dr. Litton. The scans revealed that the size of the tumor and the "uptake," or metabolic activity, had decreased significantly.

Nicole was very happy to hear, "You are really doing very well." Those are good words from your cancer doctor!


But...
chemo isn't over and it's still simply...miserable!

Round 4 is over - July 22nd and 29th...and the good news is that there will (most likely) be only one more round on August 12th and 19th, followed by radiation (which she can do without disrupting her schedule). According to Nicole - "That's it! I'll be back to my normal life - living, being YW President full time and resuming piano teaching!" She is so excited!

Warning: Piano students - find your music, your MM, dust off your piano keys and get practicing. She's coming back!

We are all encouraged and blessed by your love and support. We couldn't have better friends and family! Thank you for being you:-)

3rd Round & a Welcome Week Off!

ROUND IS IN THE BOOKS!

Round 3 Chemo (July 1 and 8) brought Nicole a few annoying new side-effects, but she's trudging right through. And she looks just great! It's "off week" now, and it's an opportune time for the oncologist to see how his treatment is doing. (Not to mention Nicole gets a little reprieve from the rigors of treatment.)

So, Dr. Litton ordered a PET (Positron Emission Tomagraphy) scan. This type of medical imaging uses a small amount of a radioactive chemical that is absorbed by specific kinds of body tissue such as cancers or other particular structures. The chemical is injected and time is allowed for the chemical to be absorbed. Then the patient is placed next to a special set of detectors that sense the location of the chemical. The image that results can give information about the presence and location of cancer cells or other features.

The doctor also ordered a chest CT scan along with the PET scan to check out what's happened to the tumor over the last three rounds of gemzar and cisplatin chemo. Results are pending. The scan is very sophisticated - producing 3-dimensional, color images of the functional processes within the body.

Dr. Litton indicates that even if the scan shows no "hot spots" he would recommend two or three more rounds of chemo, followed by radiation. (We all wanna' get this one!) Nicole wants to get finished and begin teaching piano again in September. Yeah! Also, a follow-up visit to the opthamologist this week showed that Nicole's eyes are improving. And that's great news!

Thanks for your loving help and for checking up on Nicole:-)

What a Huge Success...and Fun!

The Nuga family, with Jasmyn as the ringleader,
organized a great fundraiser
for Nicole & Frank at Sweet's Island Restaurant on Friday. It was huge success...and a blast!

Sweets, the gracious owner of "Sweet's" opened her adorable restaurant on Columbia Lane in Provo for this well-supported event.

Hungry and supportive patrons flocked through the door from 10:00 am until the food ran out about 5:00 pm. Support came from immediate and extended family, church members, friends and neighborhoods as well as from complete strangers.

Several "happy customers" took lunch plates home for those who couldn't come - huge servings of fire-grilled chicken, steamed rice, macaroni salad, grilled hot dogs, vegetable & beef chop suey and pineapple cake.

Nicole & Frank were completely overwhelmed and want to thank everyone who came to help...

"We are eternally grateful!"

A Sweet Friend Organizes a Fundraiser for Nicole

A family friend, Jasmyn Nuga, came up with a sweet and thoughtful idea to help Nicole and Frank.

There will be a delicious Polynesian BBQ plate lunch sale for several hours tomorrow. Jasmyn says that you are more than welcome to stop by and pick up as many plates as you want :-)

DETAILS:

Date: Friday, July 9
Time: 10:00am - 3:00pm
Location: Sweet's Island Grill
711 Columbia Lane
Provo, UT

Thank you Jasmyn and everyone who has and will support this event. People are truly amazing!

New Symptom of New Chemo

Just before Nicole's second treatment of Round 2 Chemo on June 18, she met with her oncologist's assistant, Michael R. Gaffney PA-C, whom she really likes. He is personable, kind, thorough...and funny. All of those are decidedly imperative! They discussed symptoms, progress, overall health, chemo health, etc. His summary comment was "You are really doing very well." It was welcome, but not surprising news. Then Nicole mentioned a strange new symptom in her eyes - it began with a flash of light (unlike migraines, which she gratefully hasn't had for several weeks) which left a tiny blind spot in each eye. It has been annoying and worrisome.

Although he has worked in various oncology areas, Mr. Gaffney had not heard of that particular symptom before, (trust Nicole to pick up an unknown symptom:-) but he suggested she see an opthamologist soon. That she did. On Thursday morning, Dr. Meyers said everything inside her eyes look good except the newly acquired blind spots. He then looked up possible side effects of her chemo drugs - gemzar and cisplatin. Yup! Cisplatin was the culprit...and it is in 25% of patients who take it. His recommendation was that beyond the upcoming chemo round July 1, she take no more of it. If further chemo is necessary, an alternate drug should be given. Nicole will inform her ongologist of that advice. Once at home, Nicole's response was "I would rather die than go blind!" (Me too...so I seconded the motion.)

It's been a good week for the most part. Nicole has, during her "off Chemo week" been able to attend a Church fireside for the Young Women, as well as full Sunday church services and a meeting afterward. That hasn't happened for about six months! Aside from a bit of fatigue, a couple blind spots and thinning hair (which she says is"coming out in clumps") it's been a wonderful change of pace.

We continue to count our blessings...among them is you.

Blessings and Support Beyond Belief

HALFWAY THROUGH CHEMO
Nicole finished her second round of chemotherapy this week, but you'd never know it by looking. She looks far better than most people you would meet on the street! Not to be fooled - she has other chemo treatment symptoms, but overall she says she feels better than during her previous battles. In meeting with the Physician's Assistant for a short examination prior to this latest treatment, we were over-joyed to hear him say, "You really are doing very well!" We count our blessings.

LOVING KINDNESS AND SUPPORT
The vast outpouring of love and support has been likewise unexpected and appreciated.

• Many friends, neighbors and ward members have been so helpful in bringing in dinner several evenings. What a huge help that has been, especially since Sharon's arm has been less than useful having had shoulder surgery and physical therapy in the middle of Nicole's difficulties. What wonderful chefs we are blessed to know!
• On the evening before her most recent treatment, Nicole's niece Hillary, spent the evening reminiscing and visiting and then left to return home to her husband in Mapleton. A few minutes later she texted me to ask if I thought it would be okay if she went to treatment with us the next morning. She wondered if it would be agreeable with Nicole. Nicole would love it! There were undoubtedly things Hillary had to give up to be able to spend the entire day in support of her aunt. It was delightful listening to the two of them chat and laugh and discuss "life's lessons" together. (They look and act more like sisters than aunt and niece!)
  
• Friends and neighbors have been more than helpful. Nicole and Frank have appreciated the dinners, treats, cards, calls and financial support. A real surprise came recently in the mail from anonymous friends in the form of a thoughtful note and a cashier's check for $500. Unbelievable! They were so touched.
  
• That same day, a kind neighbor on Elm Street mentioned that he hadn't seen Frank and Nicole very much lately and asked it everything was all right. When Frank said that Nicole had cancer and they were spending time at her parents' home, he asked to help. He brought huge equipment and cleaned up the large, unlandscaped section of their property.
  
• For some time, Nicole has gone to the same young woman to get her hair cut. When Nicole called Shelbie to "get it cut short before it all falls out," the stylist, who was expecting her first baby any day, didn't even hesitate. She insisted on coming to our home and would take no compensation for her service. And Nicole's hair is simply adorable!
  
  People are truly amazing!

Good Times at Church and Camp

Nicole had worried for weeks that she would not be able to fulfill her church responsibilities at full speed. One evening her bishop and his counselors stopped by and visited for awhile. They asked how she felt about remaining in her calling - not being released - and letting her counselors and teachers pick up the slack for a while. Nicole didn't want to give up her responsibilities as YW president. She loves the young women and the leaders she works with. This was great news!

On a few "good" days she was able to attend meetings at church and discuss last-minute plans for summer camp coming up in June. She was happy to be able to attent...even for a littlee while. Nicole, being the leader/teacher she is, gets pretty annoyed when she can't follow through on responsibilities in her usual style.

A BREATH OF FRESH AIR!

Nicole was thrilled to be able to go to girls' camp for an afternoon. She enjoyed mingling with the girls and watching their skits.

Nicole works with some marvelous YW leaders and enjoyed the casual environment of the mountain campground to relax and visit with them. It was refreshing for both body and spirit!

Doctors and Hospitals - the New '"Normal"

One of the most reassuring things in life is a routine - performing daily activities of work, family, church service, leisure. When that safe schedule is disrupted, life can become fragmented and unfulfilled. Nicole missed her "miraculously ordinary" lifestyle.

A REASSURING VISIT
In March we met with Dr. John W. Thomson at LDS Hospital in Salt Lake City. Prior to Nicole's appointment, he had done some intense preliminary work - a phone consultation with Dr. Dixie Harris, five hours spent carefully reviewing Nicole's test results and holding a team evaluation meeting with oncology specialists.It was a good visit. Because Dr. Thomson had 'done his homework' and possessed the skills, he could clearly present the specifics of the findings to that point. He was at once direct and hopeful. Yes, it looked like it might be Hodgkin's lymphoma. Dr. Thomson then stated: "This is very treatable." It was then that Nicole and I mutually let out a little, yet grateful sigh of relief.

Because Nicole's energy level was so low and Frank was working out of town frequently, they decided to stay at our home for a while where we could help out a bit easier. We loved that idea...and thankfully our kitchen renovation was complete now.

If it is cancer, a new oncologist would be needed for chemo therapy. Dr. Thomson suggested Dr. Gregory J. Litton, chemo oncologist who worked on his same team of oncologists and was "the most qualified" to manage Nicole's case.

ARE ALL ONCOLOGISTS EGOTISTICAL?
Intermountain Medical Center is a massive, strikingly beautiful medical complex housing, among other things, The Lung Institute and The Huntsman Cancer Center. Nicole would come to know both.

March was drawing to a close and Nicole would meet the infamous Dr. Litton. You've undoubtedly heard the expression "as different as night and day." That phrase only begins to describe our impressions of these two oncologists!

After we waited for over an hour, Dr. Litton bolted in the room with a 2-inch stack of unread test results and lab reports under his arm. While casually thumbing through a few pages he blurted out: "Hodgkin's huh? (Still flipping through pages) "So you've had it...what?... once?...twice before? Oh...and a stem cell transplant? Uh-huh. Well, there's only so much we can do. Research shows there's a 10-20% chance of survival!"

We sat speechless...livid, at such coldness...disinterest and egotism!

Seeing our blank stares, he added,"Well, you might just fall into that 10 or 20% range. (then backpedaling) "Well, if you want to, you could get some surgical biopsies to see exactly what we're dealing with." (How thoughtful!) It was then he recommended Dr. Michael J. Collins, thoracic surgeon. That was the most helpful thing he said in our dreadful 15-minute visit!

FAITH RESTORED!
What a competent, considerate health professional! Dr. Collins, with 36 years experience, was meticulous, kind and direct, answering every question we asked in a detailed and concerned manner. It was a 'music to our ears' experience. He also reassured us that Dr. Litton was in fact the oncologist for Nicole, stating "he is the best." He completed his evaluation with a wry smile and a twinkle in his eye commenting, "Aren't all oncologists arrogant?" Point well made!

On April 9, Dr. Collins performed thoracic surgery to secure biopsies and to insert a pleural catheter so at home we could drain fluid that would collect in the pleura. Nicole remained at IMC intensive care unit for five days. After returning home, we were to attend to the new 'appendage' by attempting to drain off fluid and cleaning the surrounding area with sterile supplies.

BAD NEWS COMES IN THREES
The results were in - "Hodgkin's Lymphoma: nodular sclerosis." Again.,,for the third time!

The diagnosis hit Nicole hard - "I will not go through this again!" "I can't do it!" "I cannot quit teaching again...we can't afford!" "No...this is it...I'm done!" Why wouldn't she feel like that? We all would.

As a mother I listened, brokenhearted for my usually upbeat, practical daughter. "Nicole, I'm sure that's how you feel right now. Then after a pause, I found myself saying, "Nicole, your job is to heal, not to worry about the finances. We will find a way."

A BETTER EXPERIENCE
Then back to Dr. Litton for her "marching orders." This time things were strikingly different - pleasant, professional and sensitive. Treatment this time would be 3 or 4 rounds of gemzar and cisplatin, once a week for two weeks, then one week off. After Nicole's second chemo treatment, Dr. Collins removed her catheter...a welcome procedure to be sure!

"The Plan"... take the month of May off from her piano teaching as well as her duties at Young Women president to rest, recover and get strength for chemo May 6th! As ill as Nicole had been, every health care professional who met her commented to the effect, "You sure don't look sick!" Nicole was blessed with a wonderful body with the ability to fight disease and heal. She'll now try it...again!

(Nicole at her parents' home having lunch with niece Alexa)

Hodgkins or Not...That is the Question

"TWENTY (or more) QUESTIONS!"

So, even though there had not been a firm diagnosis, it "looked like" Hodgkin's. But was it? Had it come back or had it never completely gone away? Why was it so difficult to diagnose? Is it even cancer? What other kind might it be? We were all full of questions...and apparently the doctors were a bit baffled themselves. After one of Nicole's procedures, pulmonologist Dr. Harris commented that she didn't "usually see lung cancer in people this young." Well...that was heartening.

Dr. Harris asked Nicole "if it is cancer" would she want to be treated by her previous oncologist. That decision was made years ago when she realized there may have been some negligence in her treatment. Nicole and I looked at each other and I waited for her to answer. "I don't think so," she flatly replied. The doctor then suggested that if she didn't presently have an oncologist, Nicole may want to see the radiation oncologist who treated her after her stem cell transplant. We all really liked Dr. John W. Thomson. He was experienced, thorough, kind and positive. Those are great qualities in any doctor, but especially if you're facing cancer - again! By now it was mid-March and there were other things weighing heavily on Nicole's mind.


PIANO TEACHING & MARCH FESTIVALS

March is an especially busy month for a piano teacher with students performing in the Spring festivals. One thing is certain...Nicole loves teaching! But by March, it was about all she could do to drag herself out of bed at 6:00 am each morning to teach her students before school. She would then try to eat something, with no appetite at all - and wonder how she would ever get enough energy to teach again in the afternoon! The large tumor was pressing on the superior vena cava and the lung. No wonder she was exhausted and couldn't breathe! Nicole's students performed at Festival and did beautifully - many winning awards. She really enjoys her wonderful students and their fine, supportive parents!

March was winding down and Nicole would now "look forward" to the countless medical consultations that would finish out March and continue in to April.

The 3rd Time Better Be the Charm!

It's been four years since Nicole's stem cell transplant and things were really going well...until they didn't.

Since 2006, Nicole and Frank have enjoyed some wonderful experiences - a trip to Hawaii, visiting her parents in New York a few times, the thrill of seeing her husband bring his mother and grandmother into the Church and a once-in-a-lifetime family "dream vacation" to Turtle Bay - to mention a few. Yet for Nicole, enjoying the simple, often undervalued things of life, is most important to her - eating and laughing at family gatherings, teaching her beloved piano students, serving in church callings, BBQs in American Fork Canyon, etc.

So What Happened...and When?

Nicole began having some rather odd symptoms about four months ago - migraines, extreme fatigue, shortness of breath and weight loss. Scattered over the next few weeks, she visited doctor's offices during the week, Insta-cares on the weekend and finally an emergency room late one Wednesday night hoping for some answers. She even checked with her gynecologist to see if her hormones were wacky. After examinations, a head CT scan and dozens of blood tests at every facility, everything checked out fine.

But she wasn't!

Things got so bad that active, vibrant, "healthy" Nicole could barely function. So, back to her PCP, Dr. Kerry Welch, who knew her history of Hodgkin's Lymphoma and had always been on top of things. A chest CT scan told the story - a large tumor in her thoracic area. It was pressing on her lung and aorta. Had it grown back? Or had it never completely gone? Regardless, it's Round 3!

Nicole was referred to pulmonologist Dr. Dixie Harris, who thoroughly examined her and performed numerous tests. On Nicole's first visit, she drained over a liter of fluid from pleural layer which lines the walls of the thorax. Pressure on the lung caused the build-up of fluid. During two separate bronchoscopy biopsies, fluid was drawn from the pleura for diagnosis. Results came back with no solid conclusions...but she could breathe a little easier - literally, not figuratively!

Still...there was no specific medical diagnosis!