Encounters and 5K

It is interesting to me how cancer is like the great equalizer.  I sat behind someone famous who had cancer on a flight recently, and I was able to thank him for his efforts regarding cancer research. This led into a conversation about cancer and how he dealt with it previously and prepares for the future.  It was such an interesting conversation.  Along those same lines, I now have the urge to talk to anyone who is obviously going through cancer treatments which would probably drive some of my friends crazy.

That urge did serve me well this past weekend though.  From talking to someone else in an airport, I  learned of a new place to get hats if I need them in the future.  Besides that, my brother & sister-in-law wanted to stop in at a  car wash fundraiser for someone with breast cancer, and she was there. I was able to talk to her for a few minutes, and I found out that she was having testing for metastasis in her liver.  It was nice to be able to talk with her and hopefully give her a little bit of hope that she could be doing well in the near future even if she does end up as stage 4.  She asked for my contact information, and I hope that she will reach out if she needs to because it was such a help to me to have people to reach out to that had been in a similar situation.  Even if she doesn't, it made me feel good to know that I reached out.

On one of my plane rides, I had an interesting encounter for a different reason.  At my initial surgery, they took sentinel lymph nodes from under each arm.  Doing this, increases the risk of lymphedema, but it is supposed to be a very small risk if only a few lymph nodes are taken.  Of course, me being me, I have ended up with mild cases of lymphedema in both arms which  is where you get fluid retention and tissue swelling because the lymph system can't move things out like it is supposed to do.  I learned this the hard way after my flight in April when my arm swelled up over an inch bigger.   Because of that, I'm supposed to wear an arm sleeve that provides compression whenever I fly (or exercise or work on the computer, ugh).  I chose to get my sleeves from a company that makes them colorful or to look like tattoos, etc. instead of just the basic medical looking ones.   I chose the ones that look sort of like henna tattoos on the arm because they are more fun, and I have had several people comment on how they can't tell it is a sleeve until they get up close.  

Well, on one of my flights this weekend, it was almost full, and there were just a couple of people trying to decide which of the seats they were going to take.  This one older women walked past me several times, but finally looked like she had no choice but to sit next to me.  Once she was settled, she looked at me and then went "Oh, what is that? I thought you had  tattoos?"  When I explained it, she apologized for  not wanting to sit next to me because of the way I looked.  Apparently with my short hair and sleeve, she thought I looked kind of rough or scary.  It cracked me up especially b/c I was dressed in a very Loft or Gap type of outfit that was about as far from rough looking as you can get.   Here is a picture of one type of the sleeves.  

At the car rental place, I was also asked if I was wearing it for fashion or for some other reason.  So, if you come across me  or someone else wearing a sleeve like this.....now, you know why, lol.

On May 8th, I had the opportunity to do the 5K walk  for Miles for Moffitt.  While I'm not a patient at Moffitt, I did get a 2nd opinion there, and my cancer related doctors have all trained there. I also figure that this area definitely benefits from any and all research that they do.  One nice thing about Miles for Moffitt is that 100% of the proceeds raised go to research as everything else is donated from local businesses.  This is such as wonderful thing compared to some organizations that only put 10-18% of the millions raised towards actual cancer research.   A friend organized a bunch of people to go and had shirts printed that said "For Nancy".  It was especially touching since I had so recently found out that I was no evidence of disease.  It allowed me to feel like it was actually okay to wear that Survivor shirt that was part of my race packet as well.   Here are a couple of pictures from that day.  (Ignore the fact that I was not wearing my sleeves even though it was exercise.....I'm still struggling with the idea of wearing them in front of people along with the fact that May in Florida is hot enough without adding sleeves to it! )

NYC

It has been a week since I got the good news, and I think I'm still adjusting.  Of course, that may be partly because one of my trips came at the perfect time to celebrate.   My sister and I had been planning a trip to NYC since the fall to celebrate the end of chemo and surgeries, but we ended up getting to celebrate something even better.  Plus, I got to check off another bucket list item.  Here are a few pictures from the various things we got to do like eat at Serendipity,  go up in the Empire State Building, go to the Today show, tour NBC studios and Radio City Music Hall, see the Museum of Modern Art, go to Top of the Rock, see Peter and the Starcatcher & Cinderella, and do a cruise around Manhattan.

 

 
It was so much fun, and I'm so thankful for both my sister helping me to go and that I felt well enough to do the trip.  I was raring to go, but did learn that I'm not quite ready to climb 6 flights at the Empire State Building and then walk and stand doing tours all the next day.  I guess I should have thought about that in advance, but thankfully there are cabs even though riding in them made me fear for my life several times, lol.

NED

Even though I had been very anxious earlier in the week, I had this strange sense of calm and peace this past weekend about my petscan that was  yesterday.  I think it was a huge help to know that so many people were praying that I would have a good scan.  The scan went as well as it could yesterday, and I was doing my usual check every 30 minutes of my online chart to see if the results had been posted.  Normally, once my doctor sees a report it gets cleared and posted so that I can see it. Nothing came through last night or this morning, and so I started to get worried that there was something bad that she didn't want me to read without her explaining it, etc.

When my oncologist walked in the room and said the scan showed good news, I was so relieved, and even more so when she said the words every cancer patient longs to hear: "No evidence of disease" (or what is often referred to as a person - NED).  Personally, I love NED, and I hope that I have a very long relationship with him.  The oncologist warned that NED can be pretty fickle and often only chooses to hang around for a couple of months, but we will hope for many years before he wanders.

What does this change for me right now?  Well, actually nothing in my day to day life.  I still have to stay on this medication since it brought me to this point, and I will be on it until it stops working/there is progression.  I do get a little break from testing in that we will be checking my tumor markers in 3 months instead of 6 weeks, and decisions about when to scan again will be made then.  Even though it doesn't change most things, it is  mentally & emotionally wonderful to be able to know that at least for right now we've managed to defeat those stupid cancer cells. They can be sneaky little things and strike back, but we still knocked them out in round 1. (I have this crazy picture in my head of a cell with boxing gloves that is laid out on the mat with a black eye and stars circling above its head & a foot holding him down)

Thank you again for all of the prayers, and I am beyond thankful for this news today!

Checking off the list

This weekend, I got to check another item off of my list by going to the Kennedy Space Center.  I hadn't been there since 7th grade, a year after the Challenger explosion.  It has changed so much, and I really enjoyed going.  I appreciate that Dana made it possible, and that Rebecca joined us on the trip! If you haven't been in awhile, I recommend it, but maybe wait until June or July when the new Atlantis space shuttle exhibit will be open.   I'll just have to plan to go again sometime to see that!

Over the next 2-3 months, I plan to check off several other things from my list, and I will probably be gone more than I am home.  One of the good things about doing the majority of my teaching online is that I can work from pretty much anywhere.   I have been truly blessed with many friends and family members that are helping to make some of my summer trips possible, and I am thankful for free flights and timeshare that are allowing me to do the other trips.  

Before I go anywhere else, I have another PTscan coming up next Monday (4/29).  Thankfully, my oncologist office does not make you wait, and I will have the results at my Tuesday morning appointment.   I am battling "scanxiety" at this point so I am trying to stay as busy as possible without completely exhausting myself.  Please pray for a scan that shows things are stable, regressing, or best option yet showing no evidence of disease!

LBBC Mets Conference

A month or two ago someone recommended that I apply for a travel grant to go to the Living Beyond Breast Cancer Metastatic Conference.  I wasn't sure if it was something that I was ready to go to or not, but I figured that I could always apply for the grant and make my real decision then.  I did receive the grant which paid for plane, hotel, and conference registration, and I attended the conference in Philadelphia this weekend.

When the conference started and I teared up as they asked people who were newly diagnosed with mets to stand and/or wave, then 1-5 year survivors, 5-10 year, and up to over 20 years, I was still very worried that I would be an emotional wreck the entire time.  At the same time, seeing 8 out of 200 women being  10-15 year survivors and 2 women being 20+ year survivors filled me with a sense of relief that "hey, this room alone shows that those stats are wrong!"  The first day was filled with lots of information about research studies and new medications or combinations of medications that were in the works.  Today, I got more down to earth information about dealing with the day to day parts of living with mets.  Some of my favorite nuggets from today are:
*Find something that gives you hope every day
*Remember that you aren't really enjoying the ride if you are constantly worrying about when the ride will end
*Live life from important event to event not from scan to scan or bloodwork/tumor markers,etc..
*Remove the cancer goggles and remember that some things would happen or not happen whether you have cancer or not, and to not attribute everything to the cancer
*Everyone's journey and situation is unique so use their experiences to help you, but don't judge your experience by theirs
*"Pack" only what you need for today -- don't worry about what you'll need tomorrow b/c you can repack for that tomorrow morning.

One of the best parts of the trip was meeting several other ladies that live with mets and just getting to talk about it.  I have talked to some other women online, but meeting people in person was very helpful.  Unlike in many support groups, we weren't the scary horror story of what might happen to you, and so we could not worry and know that others understood.  I also got the opportunity to spend more time and do some sightseeing with a couple of women from South Dakota, and I was very appreciative of the time we spent together.

I'm in the Philly airport now and will soon be boarding my plane.  I was very worried about this trip, but I am so thankful that I took the leap to make it.  It has truly been a blessing to me.

a little update

What a wonderful weekend!  David & Jenn came down for a wedding, and so I got to meet, hold, cuddle and kiss my adorable new niece.  I am happy to say that I do at least have more hair than her now as you can see in the first picture.  My nephews are completely in love with her, and it is so cute to see them with her.

One of the things that I've done over the last few months is to take up crochet to keep my hands and mind busy.  It is really relaxing to me, and this picture shows my first finished project, her baby blanket.

I was thankful today for another thing that relaxes me, being able to exercise and specifically to be able to go swimming.   That has always been a good way for me to decompress, and I needed it today after getting my hospital bill from the last surgery.   I am still waiting for information on the appeal of my insurance denying coverage for the surgery, but at least the self-pay rate on the hospital bill shows that they will only charge me about 1/3rd of the original bill if the appeal is denied.  While still a lot of money, that is definitely better than what they originally billed the insurance for.   But back to the good stuff with swimming,....2-3 weeks ago when I got in the pool for the first time since August, I was only able to do 2 laps (quite disappointing, since I was swimming for 45-60 minutes at a time before the first surgery).  Today, I was able to do 24 laps.   My pool is not a full-size lap pool, and the laps were probably pretty slow by most people's standards.   Still, I'm still pretty happy with that amount of increase  in such a short time.  Now if the weather would just warm up enough at night so that I'm not shocking my whole system when I enter the pool, it would be great.   I've also been increasing my length of time walking so that the length of the 5k won't be a problem, but now I just need to work my speed up so people don't regret saying that they'll walk it with me.  I feel like I'm slowly getting myself back, and that is a wonderful thing!  

Hooray for Energy!

The last few weeks I've noticed the return of something that I haven't had in quite some time --- energy -- woohoo!  I am probably feeling better now than I've felt in the last 3 years.  Everyone, including me,  assumed the chronic fatigue that I had previously was because of the autoimmunes and chronic hyperventilation syndrome, but I now think it was related more to the cancer growing inside of me than anything else.  Extreme fatigue days where I could barely function were occurring at a minimum of once a week previously, and I haven't had one since chemo finished (and probably even further back than that). It is a wonderful feeling to be able to have multiple all-day busy days in a row and  have plenty of energy to get through them with just being  normal person tired at the end.   This energy comes at the perfect time too, since I get to hold and cuddle my niece this weekend.  Can't wait!

I've also been able to go back to exercising more along with being able to go swimming and get into my jacuzzi tub now.  I didn't realize how much I'd been missing those things, and I am loving being able to do them again.  Plus, I have an incentive to workout because I plan to do the Miles for Moffitt 5K with people in May.   I'll be walking it, but I want to be able to walk it as close to my pre-cancer 5k times as possible.

Thanks to those who've offered additional places to add to my lists and to those who've offered to help me cross off some of the things that are already on there.  Hopefully, I will be able to cross off several over the next few months.   

My hair is coming in pretty well and is definitely lighter than before.  Most people are saying it is a dirty blonde type of color which is similar to what my hair looked like when I was a little kid.  It is still pretty short, as you can see in the picture below, but Florida weather is getting too hot and humid to deal with wigs and hats anymore. (Some of you may have already seen it on facebook, but figured I'd still include it here to document it as it grows.)  Plus, it is nice to be able to pick out an outfit and not worry about whether I have a hat to go with it.   I am trying to make sure that my earrings at least look "girly" so that there is no confusion with my short, boy-length, hair "grow" right now.   Well, that is all for now.  I still appreciate prayers, and hope that everyone has a wonderful weekend!