Bite Me Cancer™

As March ends, I reflect on blessings of the past three months. As I prayed on what my guidepost word(s) would be for 2012, God directed me to a special phrase and a special book, “In His Grip.” The author is Joe Fornear who was diagnosed with Stage IV metastic melanoma in May 2003. He had a miraculous healing and has been cancer-free since August 2003.  He formed Stronghold Ministry in 2008 to provide spiritual help to cancer patients and others in crisis.  Keeping “In His Grip” as my guidepost theme reminds me that God is awesome and that God is within me and beside me throughout each day, especially if I open myself to the guidance. I have already pushed myself in a number of situations this year where I felt I could accomplish my activity or get through the emotional turmoil of the situation because I am “in His grip.”

I have to look at 2012 away from the urgent cancer focus we had over the past 18 months.  Nicole is doing so great at college and is stable with the medical situation, so now it’s time to focus on our foundation and even sometimes to focus on my needs/desires.  We look ahead to the June scans and bloodwork, praying that God intends for Nicole to remain stable and happy. 

Nicole has had a very busy semester, but she is wonderful to call almost daily and share her feelings with me. She continues to inspire me with her positive attitude and her desire to make a difference with her Bite Me Cancer Foundation.

December 20 was the day of Nicole’s scans at Johns Hopkins – 1 CT scan for lungs, 3 MRI’s (neck, abdomen/liver, pelvis/bones).  We then had to drive back on December 22 to meet with Dr. Ball to hear the results.  When Nicole had her blood work done on November 20, we had heard a few days later that the results were stable. Yes, the calcitonin and CEA were high, but they weren’t worse and had continued to remain stable for many months. That gave us some relief as we looked towards the scans, but we were still very nervous when we went to meet with Dr. Ball.  Nicole told me that she knew she would cry either way – good or bad results.

I prayed so hard for days and days to receive good news on the scans. A few days before the results as I prayed, I realized that what I had to deal with was that “thy will be done.”  I had to accept God’s will, and somehow in the praying I realized that we would get through it even if the results were bad. I told Nicole what I had realized and told her that we had already made it through the worse part with the initial diagnosis, the extensive surgery, the first vocal cord procedure and the radiation. If we could make it through that with God’s guidance, then we would make it through anything.

The day before her scans, she told me that she realized that she shouldn’t be super nervous about having the MRIs done because tons of people have MRIs for all kinds of medical issues, not just for cancer.  She said if she kept that in mind, then the scans wouldn’t make her nervous this time.  She did great – and was even given a brand new machine that made the MRIs go quicker.

As we had looked forward to our holidays with Nicole home, we knew that we couldn’t make any major plans until the results of the scans were received. When we heard the great news – no new cancer, one suspicious spot that had been watched for a year had shrunk (so not cancer), and everything else was very small and hadn’t grown in over a year – Nicole did cry – and we sure were feeling so blessed.  We then realized that we really didn’t need to go anywhere. We had all we needed with the three of us together with our news.  Nicole doesn’t need scans done until June 2012 – wow! Bloodwork for Calcitonin and CEA will be done in March to monitor in case anything has changed. 

I’m feeling such relief…so grateful for such a blessing.  I know that I have to stop worrying, stop looking at statistics, stop wasting energy on focusing on the cancer and just enjoy life with Nicole on a daily basis.  Dr. Ball mentioned a new study that Nicole’s surgeon is starting too – so much going on in the world of cancer research!

So, we received a very special Christmas gift in Nicole’s medical update.  We accept this blessing, focus on the good work that our foundation is trying to do, spread our belief in God and keep going. Merry Christmas and Happy New Year! (By the way, Nicole has been doing great at college, and she loves the whole experience!)  This beautiful statue of Jesus is at Johns Hopkins!

Nicole had her 3 MRIs and 1 CT scan in late July. She was such a trooper, as usual, having to deal with about 3 hours of MRIs with contrast.  We did receive great news in early August from Dr. Ball that the scans showed no new spots. There were still a few suspicious spots that were stable, and Dr. Ball was shocked that one suspicious spot in the mediastinum area actually shrunk! I had to quickly say “Well, you know we have hundreds of people praying for Nicole.”   Dr. Ball said that he was so surprised at how great Nicole was doing, compared to where the cancer was found during surgery.  He gave us his positive feedback that Nicole should just go to college and enjoy herself.  There was the acceptance that if there were future cancer issues, Nicole might have to come home for treatment.  Nicole understood the situation and began to focus on her college experience.

So, in the early morning hours on the day we were moving Nicole to college, I was overwhelmed with this change in our lives. I couldn’t imagine this opportunity for her when we were going through diagnosis and surgery. It’s amazing how some things can be so normal – it really is about the “Power of Now”. I just try to stay focused on now and enjoy all the blessings we have. Yes, I do pray every day for her good health and to understand God’s will in our lives; and then I try to remember my 2011 guidepost saying “Let go, and let God.”

Yes, it’s been wonderful to focus on Nicole’s fun and exciting times during May/June. Yes, I’ve also remembered that more MRIs and a CT scan will happen in July. Nicole has thoroughly enjoyed getting ready for her high school graduation, which has been gratifying and emotional for us. I remember in May 2010, after her surgery, that I had no idea if she’d be able to graduate from high school on time. So this graduation was exceptionally special to me. We’ve had some other activities during this time, which unfortunately included the passing of a very close friend in late May who was also Nicole’s godfather. That emotional situation certainly impacted our perspective of the happy times of Relay for Life and graduation. He would have been a part of all of the activities, and we missed him at each of the events.

The Relay for Life event, June 4-5, was so very emotional. We were full of memories of the year before, which was when we were so new in our cancer journey. We were happy that people seemed inspired by Nicole and her foundation. We enjoyed meeting so many others who are cancer survivors or caregivers. We made new friends. But it was hard to do it all without our dear friend who had passed or his wife (our very special long-time friend, Nicole’s godmother) who couldn’t attend due to it being too hard. We missed her alot.

Nicole also received a special Virginia resolution passed by the Virginia General Assembly earlier this year.  Virginia Delegate Ken Plum brought the resolution to the Relay and presented it to Nicole.  In the picture, on the left of Delegate Plum, is Fairfax County Sully District Supervisor Michael Frey who also came to support Nicole.

The whole event made me realize that things do not really get as easy as we hope – and that our journey is about how we handle things that come at us. I heard something yesterday on a TV show from a woman: “I’m not destination happy; I’m journey happy.”  She explained that we can’t say “…when this happens, I will be happy.”  She said we need to find a happy perspective throughout our journey.  That’s where I am at – finding joy/peace in every part of the day/journey.  I certainly am challenged alot in doing so, but I’m trying. 

At Nicole’s school at convocation, Nicole received a special scholarship from a family who has started a scholarship in honor of a woman, which is part of the Ulman Fund for Young Adults.  It was very emotional, as we met the son and the husband of the woman. The son was so honored and inspired to meet Nicole and said so many nice things about her while he was making his presentation. 

I’m still adjusting to the fact that Nicole has actually graduated from high school! She is so excited to go off to college in late August, and I have to figure out how to deal with it all.  I know she deserves it, but I’ve been so used to being her caregiver (more so since the diagnosis, of course) that I know it will be difficult for me.

I pray that there will be no cancer or no new cancer with the July scans so that Nicole can enjoy the beginning of college. We have some fun summer trips happening too – no time for negative news! God will take care of us!

February ended with some good news. The suspicious node in Nicole’s neck didn’t light up this time on the PET scan.  So no cancer there? Things will now be considered stable until the next set of body scans in July. Bloodwork will still be routinely done every 6-8 weeks. What a way to end winter – with a 5-month “vacation” from scans and hospital visits! We had a special visit at Sloan Kettering in New York City, with Dr. Tuttle, just after the PET results came out. He confirmed the current stable condition and gave us a wonderful sense of calm. His humor and manner was very good for us. Our Hopkins doctor, Dr. Ball, is wonderful, compassionate, and kind. It was very interesting to see how the 2 doctors’ manners can take the same data and present it in slightly different ways, although the message came out the same. We feel very blessed to have such experienced doctors helping us. The first few weeks of our “vacation” seemed kind of strange – still praying really hard but no result to measure. We slowly started realizing that we could plan for vacations – spring break and summer – and anything in between. How exciting! It certainly is a different perspective to look just a few weeks or a few months ahead instead of the “old days” of taking for granted that we’d have many years to do things.

One night, Nicole and I were sitting on the couch, singing and joking around. Then it just flashed into my head: this kid has cancer! It still seems surreal at times. I ask God every day to take away the cancer and to let her be one of his miracles. Nicole has continued to be amazing – getting ready for this year’s Relay for Life, doing more things for the foundation, speaking in front of some other groups, putting together a small support group of teens with cancer near us, and designing new t-shirts with Bite Me Cancer on them. Her quote this year is “Fear ends where faith begins.”

As Nicole looks to college, she highly pressured us to let her go away to school. We wanted her to remain close in case there were challenges with the cancer, but she didn’t want to let cancer determine her college decision. After many discussions, tears and meetings with college staffs, along with a meeting with our Hopkins endocrinologist,  we decided to let her go away (just 2 hours away, but still…).  She told us that she wanted to force herself to learn how to manage her medical care on her own and that if she stayed local it would be too easy to come home or have us come to her.  It hit me that she does deserve this opportunity to experience living away.  She has defied the odds so far, and why not keep going?

How many prayers can I say in a week or even in a day as I await Nicole’s latest test results? She had 3 MRIs and a ct scan on Thursday, Jan. 6, 2011. It took another week for me to hear from the doctor who wasn’t sure yet what we should do given there was a suspicious node in a sensitive part of the neck.  It was determined that he would talk to Nicole’s surgeons the following week (Jan 17 week). So we waited some more.  We ended up not hearing until the week after that! There still is no answer, but now there will be a PET scan on Feb. 18 since there was a little miscommunication as to when the last PET was done (before or after radiation).   It’s hard not to get frustrated and even angry at the doctors or the processes that are in place, but I do need to remember that there are hundreds of very seriously ill patients to take care of.  I’ve been reciting “Let go and let God” so many times, as well as reading my favorite Bible verses and praying for others in need.  I’ve come to realize this morning that I will go through this “waiting stress” every time results are due which could be every 3-6 months, so I guess I have to find a way to manage my expectations and worry.  Why is it that even with all the prayers being said for us, and all the prayers I’m saying, and my strong belief that God is guiding us, and my belief in heaven, that I still feel the need to worry and be stressed! I’ve prayed to understand God’s will, and I feel that is a good focus for me.  So, I wait and play mind games with myself!

Christmas has always been a very special and spiritual time for me, for celebrating the birth of Jesus and our many blessings.  For me, Christmas 2010 would be different.  My faith was stronger than ever, but I had a wide variety of emotions coming at me.  I was even nervous to put up the Christmas tree with all its ornaments because I had collected many ornaments from St. Judes Hospital over the years.  For many years, I purchased their ornaments each year because I felt close to their cause just given some of Nicole’s other physical issues she had been through in the past.  I now was imagining my tree with many, many ornaments from St. Judes where the deal with childrens’ cancers…and now my own daughter had cancer.  How was that possible??  When the time did come to put up the tree (which I usually did by myself because I loved to just look at each ornament and be with my memories), my husband stepped in and announced that the three of us would put up the ornaments.  He made the experience alot of fun, playing Christmas music while he and Nicole danced and sang.  They very quickly had put up many of the ornaments while we all were laughing!  I missed the whole anticipated depressing experience that I had thought would happen! Thank you, Michael!

I did feel very blessed for Nicole and how well she’s done on this cancer journey; however, it was also worrisome for me to wonder about the future. I know I shouldn’t spend time worrying, as one quote reminds me: “Worrying is like rocking in a rocking chair; you have something to do but it gets you nowhere.”  

This month, I reflected often on the special word that came to me in prayer on New Year’s weekend 2010. I don’t usually make true New Year’s resolutions, but I pray for a special phrase or word to be my guide throughout a given year.  For 2010, the word that came to me was “recalculating.”  An article that I had read just stuck with me where it was explained that we should look at our lives as a GPS looks at our driving — that there is no right or wrong way to do it.  The GPS just reports “recalculating”, and it finds another option.  That word really became my mantra for 2010, and I thank God for bringing it to me.   Our family certainly had to experience many “recalculating” adjustments throughout 2010!

I had also spent time focused toward the 3rd week of December, just a few days before Christmas, when Nicole was suppose to have another series of scans/MRIs at Johns Hopkins.  However, due to some challenges with the MRI machines, Nicole decided that she didn’t want to deal with these tests until after January 1.  It really was a great stress release for us!  Again, I was reminded that I shouldn’t spend time worrying about something that may happen in the future because things can change.  “The Power of Now” is a great book about living in the present, and I am trying to do that day by day.

Over the Christmas and New Year’s holidays, we did have many special moments as a family. I am so grateful for our time together. Our friends and family have been wonderful gifts to us this year too, and I thank them as well as our broader network of supporters for staying by our side and giving us prayers, good wishes, and other help.

At the end of every year, I go through all my electronic photo files and print out pictures that I then put in a small photo album for our family room. I love doing this as it gives me a wonderful snapshot all at once of how wonderful our year was.  This year, the pictures showed me that we had many more hours of fun, laughter and love than the time spent on the darn cancer. Yes, I thought about Nicole’s situation often each day, but our year was full of many amazing times that certainly were more important than my worrying!

For 2011, I have a new special phrase given to me in prayer and reinforced by a “coincidence.”  In the past, I have rarely shared my New Year’s word/phrase, but this year I feel like it’s important to share it as it will help me remember to follow it! Perhaps it will also help someone else. It’s not an uncommon phrase, but I feel that it is truly an important phrase for me for 2011.  The phrase: Let go and let God.

Happy 2011!

So many blessings took place during November. First, we had some special family members from NY and TX came to visit Nicole. They wanted to attend a special event with her. Nicole was given the Leadership Fairfax Non-Profit Educational Leadership Award, which was presented on November 6, 2010. She had to give a short speech in front of almost 400 people! We were so proud of her – once again.  I really don’t know where she got the strength to do that!

The next day, the Make-a-Wish Foundation volunteers came to our house to present Nicole (and her friend, Julianne) the details of Nicole’s Wish trip! We had been told in late August that her wish trip was going to happen – which was to meet Rascal Flats. The Wish volunteers were able to make that happen along with having us attend the Country Music Awards in Nashville, TN! The trip was November 9-12. We were so worried that Nicole wouldn’t be able to make the trip due to the radiation treatments, but it turned out that she felt good enough to go. The Make-a-Wish Foundation is so wonderful, and they believe that these trips help the whole family and also help bring positive thoughts and emotions to everyone involved. That is so true! The trip was amazing – from the stretch limo rides to and front the airports; meeting Brad Paisley, Jeff Gordon, Dierks Bentley, Rascal Flats and Keith Urban; attending the CMA rehearsal, taking a tour bus to the actual show, and attending the amazing CMA Awards show!  For me, the strange part was balancing the exciting happenings vs. the reason we were there (due to the cancer).

Upon returning home on a Friday morning, we had to still have a radiation treatment in the afternoon. After that, there were only 3 more treatments the following week! We also had to prepare for Nicole’s special 18th birthday which was just a few days after the last radiation treatment. Then, after her birthday we had Thanksgiving the next week! We certainly felt like we had so much to be grateful for, although we’d rather not have to be dealing with cancer.

Over the past few months, we also have been setting up Nicole’s new Bite Me Cancer Foundation. Dealing with legal issues, banking issues, website design issues and Nicole’s goals has made the process quite a learning experience for all of us. We hope that everyone will be happy with the results and want to be involved.  I really do feel that part of my mission is to share where my faith has become part of this cancer journey.

At the beginning of the month, I really didn’t how we would adjust to the new radiation schedule which had me taking Nicole every day for a 2:45 appointment. We needed about 25-30 minutes to drive up to the doctor’s office and the same for driving back and then about 15-30 minutes on average in the office.  If all went well, we’d spend about 75 minutes a day with this new process…5 days a week for 6 weeks.

Nicole and I had many fun trips in the car. I wanted to drive as many times as possible, so I planned my schedule around that. My husband was running our business and taking her for the Hopkins tests/appointments (when we both didn’t need to be there), so we worked out a good balance.  Sometimes, Nicole just fell asleep in the car — sometimes both ways! She can fall asleep anywhere. Other times, we sang songs, talked about school, enjoyed the fall leaves turning, talked about all the bad drivers around us, etc.  Those rides/talks were so special to me.  We even ended up on some shopping sprees after radiation appointments, since there were some stores nearby!  Nicole was a joy through this process and did light up Dr. Au’s office too.  Throughout the 30 treatments, she was the only “kid” in there.  I could see many times where patients thought that I was getting radiation until Nicole stood up and left the waiting room.  One special time, when we were both joking about something in the waiting room, I said to her “Too bad you don’t have another kid to play with while you are here.”  She said “That’s okay mom; I have you!”  That was so special to me! The nurses got a kick out of her. She could even fall asleep on the radiation table for the 7-8 minute treatment with the mask locked on her face!

On October 15, Nicole and her dad went to Johns Hopkins for a post-op appointment with Dr. Akst, who is her vocal cord doctor and the man who performed her vocal cord surgery.  We had been told through the process by her original surgeons and Dr. Akst that we would not see any movement of the right vocal cord since the nerve had been taken out. However, we seem to have received a little miracle! During his exam of Nicole’s cords, where he again put a camera into her throat, he said that her right vocal cord was moving at about 50%!!!  How can that be happening? We were all so happy! We see this as another blessing and are so grateful for it!

So, we ended October with Nicole feeling some side effects of the radiation…neck skin discoloration and irritation, changing taste buds and fatigue.  She still went to school every day, perhaps missing one day and a handful of morning classes. But she was doing great!  We felt very blessed.