Saturday, November 30, 2013

PTscan Tuesday & thankfulness

I will be having a PTscan this Tuesday to see whether I am still NED.  I know that my tumor markers are still normal; so, I have a sense of peace going into this one.  If cancer has returned, then at least we will have caught it early, and whatever will be will be.  With that said, I still would appreciate your thoughts and prayers about the scan.

With thanksgiving this week, I thought I would pass on a few things that I am thankful for:

1. Knowing that my liver was clear of cancer in 2008 -- That may sound weird, but I've had several people ask whether my stomach problems about 5 years could have been related to the cancer.  Last week, I went to my gastroenterologist, and he confirmed that I had a ctscan in 2007 & 2008 along with an MRCP of my liver in 2008 that showed that it was clear.  I didn't realize how much that had weighed on me as to "did we miss something back then?" until I got those answers and saw all of those reports.  It was like a cloud of guilt/worry lifted off of me.  Also, it tells me that it grew in a 4 year timeframe or less which just reinforces how lucky I am that things were addressed and done as they were.

2. It has been 16 1/2 months, and I am still NED (at least for right now) -- I don't dwell all the time on the numbers/stats, but sometimes something happens to remind me of how long it has been,etc. This just makes me feel fairly confident that my name will not be a part of at least that first 18 month stat.  I will probably be doing a little jig on January 17th when that day hits. ( Of course, it would be an FC legal jig.)  I feel very strongly that the prayers of so many people have been heard to get me to this point, and I can't neglect mentioning being thankful for that.   I am feeling really good right now, and I am so thankful for that as well.  

3. I have gotten to spend time with or will be spending time with soon so many friends and family members. -- We all have so many friends & family members that we don't see very often, and it is very important & precious to me to get to spend some time with them whether it is a quick meal or getting to spend several days together.  Several people have taken time out of their schedules in order to make sure that that can happen recently, and I truly appreciate that. 

While that isn't the list of 30 that so many have done recently, I am thankful for so many things, and these are just the "biggies".  I hope that everyone had a wonderful thanksgiving.  

Wednesday, October 30, 2013

A big thank you and a big YAY!

The Temple Terrace Fire Department hosted a spaghetti dinner to benefit some women in Temple Terrace with breast cancer in September, and they asked if they could include me in that.  Today, they came out to my house, with truck lights shining, and presented me with funds that were raised along with a shirt and TT Fire Dept afghan.  It  was an overwhelming and amazing thing for them to do, and I appreciate it more than I can begin to express.  It is a constant fight even when things are going well, but the prayers of everyone and the generosity of people such as the fire department & those that came to the spaghetti dinner definitely makes things a little, no, a lot easier.  Here are some pictures from them coming out today starting with me walking out to meet them to them asking to have a prayer and then a picture with the truck before they left.  Thanks to Shannon (& Kennedy)  for coming over and taking pictures for me!





The big YAY! is that I found out my bloodwork results today, and they are still in the NORMAL range == still NED!  We will be doing a PTscan before the year is out just to take another look & be cautious, but the tumor markers had actually dropped a little more, which is the way I like it!  Thank you for all the good thoughts and prayers.  I appreciate them so much!!!

Tuesday, October 29, 2013

Check, check, and ?

In the last 2 weeks, I have been able to check off 2 items on my "to do" list:  seeing Niagara Falls and swimming with dolphins.  Well, actually, Niagara Falls helped check an unwritten one off as well in helping me see leaves changed.

I went to Niagara Falls during FC's fall break, and it was beautiful.  It was especially nice to get somewhere with colder weather than we've been having in Florida.  I stayed on the Canada side, and it was the weekend before Maid of the Mist and some of the other attractions closed for the winter.  That made for very short to no lines which helped me get to do everything that I wanted.  I loved the Whirlpool Aero Car  and the Journey Behind the Falls for such amazing views that they gave.   Here are a few pictures from that trip







The swim with the dolphins was done at Discovery Cove, and I got the opportunity to do that with Josie, my birthday twin.  It was amazing, and well worth every penny, especially since we got a pretty sweet Florida resident deal that includes a Sea World pass until the end of January.   Such a fun experience! If it is on your "to do" list, I highly recommend Discovery Cove.



That brings me to the "?" of the title.  My 3 month oncologist visit is this morning.  I've been dreading it which is really pretty silly since we've done no tests beforehand.  Bloodwork will be done when I get there, but the tumor markers take a couple of days to process.  I'll leave today knowing my white blood cell count and that type of bloodwork info, but not really anything else as to whether I'm still NED or not. I'm not sure if we will go ahead and schedule a PTscan or wait to see what the tumor markers say.  Please keep me in your thoughts and prayers that the bloodwork will be good, but also, that I will be calm during the waiting time.  The waiting is truly one of the hardest parts about the process.  Thanks in advance!




Saturday, October 12, 2013

MBC voices heard

Since I complained about the metastatic breast cancer community being in ways "ignored" in my last post, I felt it was important to praise a new group that was announced yesterday.  The Metastatic Breast Cancer Alliance, http://www.mbcalliance.org, was just formed.   "The Metastatic Breast Cancer Alliance aims to unify the efforts of its members and to increase awareness and education while advancing research and policy – efforts for metastatic breast cancer that have the potential to extend life, enhance quality of life and ultimately find a cure (http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf).  

Details are not prevalent on the site, yet, but they do have an initial goal of conducting a " Landmark Analysis to assess gaps, duplication and opportunities in the field to gain consensus on a path forward to addressing the unique needs of those living with metastatic breast cancer"(http://www.mbcalliance.org/docs/MBCA_Press_Release_10_10_2013.pdf) with a projected release date for the information in early 2014.   Here is the video that they released which I thought was extremely well done:  http://www.youtube.com/watch?v=NyTAf3niEO0&feature=youtu.be.

 It is just nice to know that the voices of many with MBC have been heard, and this is a wonderful starting place.   It was interesting though to see the responses that have been posted on some of the web pages or facebook links to the information. The Komen foundation has been criticized by some people for not doing enough for MBC, the type that Susan G. Komen passed away from.  Their facebook page announced their participation in the alliance by giving some of the real stats about the percent of early stagers that will become metastatic.  The response by many was that the post had ruined their day and was insensitive; they didn't need to read that.  This was such a classic example of what occurs in so many ways for those with mets, and it just emphasized to me how much this type of group is needed.  Of course, no one wants to hear those facts, but having lived being completely blindsided by it, education of that possibility is needed.  So, thank you to the Susan G. Komen Foundation, Metastatic Breast Cancer Network, Avon Foundation for Women, Breastcancer.org, Living Beyond Breast Cancer, and the other 10 organizations for taking on the challenge so that "together we are stronger than the disease."

Thursday, October 10, 2013

The elephant in the month of pink: Metastatic Breast Cancer

There is one, big elephant sitting in the middle of October, and it definitely is not pink. Metastatic Breast Cancer (MBC) is when the cancer metastasizes and spreads to other organs and parts of the body.   For those that get breast cancer, 30% will become metastatic regardless of initial stage.  6-10% of all patients are stage IV or metastatic from the beginning.  I fell into that category, though we didn't know it at the start.  Though, patients who have early stage cancers are often told that they are "cured" at the 5 year mark, breast cancer can return/ become metastatic anytime after an initial diagnosis, and I have met women that had it return 10, 15, or even 20 years later.   This can be the case regardless of how early the cancer was found and the treatments or follow-up that result.  Early detection is not a cure! But early detection can be helpful in trying to stop the cancer from spreading.  Still, there are many people who did "everything right", and their cancer metastasized.

Breast cancer only becomes terminal or fatal when it metastasizes and spreads to other parts of the body. Only 2- 5% of all breast cancer research money is spent on researching metastatic breast cancer; yet, it is the only kind that is fatal.  A metastatic breast cancer patient will be in treatment for the rest of her, or his,  life.  Of course, all research benefits the MBC patient in ways by providing more types of drugs to prolong life, but shouldn't we be looking for ways to stop the metastasis and it's continued growth in at least equal numbers to the percentage of patients who will have the disease?  In the US, there are 40,000 deaths per year from metastatic breast cancer.    Unfortunately, these numbers have not changed in the past few decades though awareness of the disease has definitely increased.  This is very sad to me, and I am thankful that there are organizations like metavivor.org who are striving for equality with campaigns such as 30% for the 30%.

 Oftentimes, patients with MBC feel secluded even in breast cancer support groups and/or organizations because they are "what everyone is afraid of becoming." (I have been very lucky to connect with women who weren't scared off by my stage 4ness, but I have still faced this as well in some situations.)  We are rarely featured on any of the "pink" ads, most likely for the same reason.   Being a survivor takes on a different meaning for me as MBC patient, and this video is a good example of the many ways that people feel about it:   What does the word survivor really mean for the metastatic breast cancer patient?  Of course, as all of my trips have shown, I much prefer "living" with my diagnosis, but there are a lot of different components that go into that as well as shown in this video: How do you live with metastatic breast cancer?

I have very mixed feelings about all of the October pink.  Every time I see something pink, it reminds me of what I am dealing with, and sometimes I just want to forget it.   There are great organizations  that do wonderful things to help people in their communities, provide services for people who can't afford it, and research.  I am so thankful for those organizations and businesses that do those things and that show exactly who and/ or what the money is going for if you buy their product or service; I'm also very thankful that there are organizations that help individuals in their community because cancer brings stresses in so many ways.   I'm just not so fond of the many groups that seem to be capitalizing on a good, pull at the heartstrings marketing campaign, but you can't find where the money goes, etc.

 I know there are people out there who are battling, or have family battling other diseases, who would say "be thankful, at least people are attempting to raise money, our disease doesn't get funds like breast cancer".  I understand that, and I wish that every disease would get the funding that it needs. I just also wish that  my disease, Metastatic Breast Cancer, would get the funds that people seem to think it does or actually be curable, as people seem to think it is.  You wouldn't believe the number of well-meaning people that say "well, you have a good cancer b/c it is curable now" or "well, but you just had breast cancer compared to.....", in part b/c that is what is often put out there through many of the marketing campaigns. I've even had those things said to me by nurses and doctors, though not my cancer ones.   I can guarantee you that when you are getting the news, going through treatments and scans regularly, and planning your life in only 3-6 month chunks from dr appointment to dr appointment because you've been told that you are at best "treatable not curable" that there is no good cancer.

 I also wish that people would  realize that campaigns such as No Bra Day, while possibly well-meaning,  can do a disservice and belittle what people battling the disease are actually going through, especially when "scheduled" on national metastatic breast cancer awareness day. If you've been diagnosed with MBC, you most likely don't care about "setting the tatas free" in support of breast cancer,  and care much more about hoping the cancer leaves your liver, lungs, bones, and/or brain (the 4 most common areas for breast cancer metastasis).   In 2009, the Senate and Congress made resolutions that October 13th of each year would be National Metastatic Breast Cancer Awareness Day: http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/.  I hope that you will take a moment to think about me and the many other  faces of metastatic breast cancer on October 13th rather than the latest facebook or internet fad related to breast cancer.

If you actually made it through all of that, thank you for reading my rant. I just needed to get that off my chest, both literally and figuratively, lol!  I am very thankful for the treatment I've received, and the fact that I am currently enjoying being NED.  What I wrote above is still the reality that I live, though,  and some of the many thoughts that go through my head.  I try to generally be upbeat and positive on here, as that is the focus that I try to have in all things in my life now, but every once in a while I just need to be a little more real.

Tuesday, October 8, 2013

Busy, busy!

The last few weeks have been very busy.  I had and still have 6 classes (2 on-campus and 4 online) going on, and so, I was frantically trying to get ahead with those to prepare for 2 more online courses that started this week. Whew! My calendar is getting a workout trying to keep everything straight for all of them.  Of course, it makes me stop and be thankful that I am worrying about juggling classes and not doctor appointments this year.   My next oncologist appointment is on Tuesday 10/29, but I am trying to not think about that too much yet.

I had to, or got to depending on which way you look at it, say goodbye to my trusty 2001 Civic last week.  It was a 2 door and very low to the ground, which was exacerbating my joint issues, and my right leg had begun hurting/going numb whenever I drove over 20 minutes.  That was definitely a problem when I have to drive 30 minutes to get to my HCC campus. With the age, health issues, and even car issues, it just seemed like making a change was the right thing to do. Thankfully, I was able to work out something with my home equity line to pay for it so that I have some flexibility in that. (I know it isn't necessarily the best way, but with my very unstable schedule, it will be helpful to be able to pay more or less depending on my work and medical situation.)  I never pictured myself as an SUV person, but I  LOVE how easy it is to get in and out of my "new to me" Rav4.

I did get to take a little break this weekend to spend some time in Orlando with my nephew Drew (and his parents).  They were able to pretty easily twist my arm to watch him in the hotel while they went to Halloween Horror Nights.  I hate haunted houses and that type of thing, but I love getting some Drew cuddles; so, it all worked out.  Plus, we were able to see one of my favorite groups, Sister Hazel, perform at Epcot. Bonus!!  Here are a few pictures from the weekend.




Thursday, September 19, 2013

Embracing bedhead and other things

Having short hair is so easy! You get out of the shower, maybe blowdry for a short time, and go.  It has only been in the last month or so that a brush was even necessary. (Yes, I know that is sad, but when your hair just sticks straight up, you just run a hand through and done.)  I love Ginnifer Goodwin's short hair and the many looks you can get with it, and I have learned the most important lesson of short hair with curl from her - "Embrace bedhead!"  It doesn't seem to matter what I do.  When I style it, my hair looks like this:
But, give it two minutes out in the Florida humidity from just walking to my car, and this is what you get:
What is that one rogue bang thinking?  I am not trying for the Superman curl on the forehead, let alone the birds could nest in this crazy mess look........... face palm!  So, I'm learning to embrace bedhead at any time of day.  My hair is going to do what it wants anyway!   Plus, I'm sure that my bad habit of playing with or running my fingers through my hair when thinking does not help it anyway.  Any of my former band students could tell you that I do pretty odd things with my hair when concentrating that I don't even realize I'm doing.  At least I can't really twist the front of my hair into a bun or anything too  crazy while working since it is so short.   It is growing, and is still very thick; so, I'm thankful for that!

I've also had to embrace the fact that I had to go up a size to a size & 1/2 in shoes. Crazy!  My feet have swelled ever since chemo. That is how I've always reacted to the steroids that they give you, but apparently it is a side effect of my anti-hormonal drug, too.  It wouldn't be such a problem if it weren't for the stupid hand-foot syndrome that I got during chemo.  The bottoms of my feet hurt all the time, and if the shoe touches even just a tiny bit anywhere, I get bad blisters.  I knew that hormonal changes in pregnant women could cause them to go up a shoe size, but I've recently found out that  my hormonal changes could also cause that to happen. So, add that to swollen feet with skin that blisters if you look at it funny,  and I had to go out and buy bigger shoes for work/church.   I've had people say, well, sometimes  if you lose/gain weight, your shoe size will change too, which I know is true.  Though I wish it wasn't the case, I have been in the same 15 lb area playing up & down games for the last year and a half so this fairly new thing of all my shoes being too tight isn't directly related to that, I don't think.  I'm not chucking all of those old shoes, though yet, just in case any one of those things eventually gets better.

My goals have been coming along nicely.  We've sent out several blankets for Covered with Care, and I made it through a full spin class standing as much as everyone else this past Monday night.  Now, to trying to up the resistance more than I have been.  I wish I had seen more weight changes, but I know that the Livestrong classes and spin are making a difference.  To go from barely being able to stand up 10-20 seconds per time within the class to standing the whole time for every interval in 5 weeks seems like I'm making good progress fitness wise, to me at least. Getting more fit for anything that comes my way in the future is the most important thing fitness-wise to me!

I still appreciate your thoughts and prayers that things will stay NED and good for as long as possible! I count my blessings regularly, and am so thankful that I'm only having to worry about little things like shoes and hair right now.  A year ago today, I was heading to an ART lunch (Adams Retired Teachers, but they let it stand for Resigned for me) having had my PETscan 4 days before. My world changed in July with the initial cancer diagnoses, but this time last year, I didn't know how much the following Tuesday would forever impact my life.  I was still living in my cancer is gone, but we are doing chemo just to kill any possible stray ones,and then I'll be cured land.  Wow, I was naive!   Today, I am again, minutes away from leaving for an ART lunch, but I'm at a very different place now.  Still hopeful that cancer is gone and thankful for every minute that it stays away,  but I've learned so much about cancer and myself in the last year.  
Enough of thinking....I'm going to finish getting ready for lunch. Hope you all have a good week! I'm going to leave you with pictures of two of the cutest little blessings that my family has added in the last year. Their dads and older cousins are pretty good blessings too :)






Tuesday, August 20, 2013

Goals

This week brings the start of the semester for 2 of my schools and the final week of summer classes for another school. I figure this is the perfect time to share some of my goals that I've started working on....

Goal #1 - To get as fit as possible
At my last oncologist appointment, she mentioned the Livestrong YMCA program which provides a free membership for 12 weeks along with 2 small group personal training classes each week.  I am on week 3, and the classes have been such a help to me.  Since I still have the port and have to be careful of repetitive motions with my arms, I was very nervous to do much with weights for my arms and chest.  I feel much more confident that I am learning what can be done effectively now since the trainer has specialized training on cancer issues.     Since my feet are still having problems from the chemo, I have had to come to grips that walking/running won't be the best way for me to get cardio, and a goal like a 5k is probably not a good idea.  I had been wanting to do a spin class last summer, and so I have finally started to do them.  I've been to 3 classes so far, and I've been able to keep cycling for the entire thing.  I am not able to stand as much as they stand or use as much tension yet, but I know that will come with time.  I'm doing 2 classes a week right now since I go on 2 other days for the personal training class.  Hopefully, when that is over, I will be able to do a class 3 times a week.

Goal #2 - To get Covered with Care up and running
I've posted something on facebook about this already, but I figured I'd mention it here as well. I really wanted to find a way to do a little something for others, especially those that have a rare type or were not the "normal" age when diagnosed with their type of cancer. Since I've found a lot of solace in crocheting blankets and had heard people express appreciation at being given blankets for treatment,  I worked with my friend Kim, who has also dealt with cancer, to create Covered with Care.  Hopefully, this is something that can help people and continue long after us.  If you have a chance, please check out our webpage at coveredwithcare@blogspot.com.   We have already received 4 names and have started getting packages out to them.  We are looking for both people to send blankets/afghans to and people to donate blankets/afghans.  Any type of blanket/afghan (homemade, store-bought, crocheted, quited, knit, fleece, etc.) are  welcomed.  The blogspot page has more details on how to recommend someone or donate a blanket.

I have a 3rd goal/want, but it is not really one that I can control or one that is very important in the grand scheme of things.  I really want my hair to be longer or at least long enough to have normal length bangs.  It is growing (and pretty fast from what people say), but I had a hard time seeing that until I looked at these 2 pictures side by side.....  The one on the left is from April 3rd, and the one on the right is from last Monday. I guess that is not too bad for 4 months.   Sadly, that is what my hair does when left to its own devices now, but thankfully there is good hair product, lol.  I hope that whatever goals you have set for yourself that you can see progress.  It may not be noticeable each day, but hopefully, you can look back in 4 months and see how far you've come!
 

Wednesday, July 31, 2013

So happy together


Imagine me and you, I do, I think  about you day and night, it's only right.....so happy together...

Very thankful that NED (no evidence of disease) has decided to stick around for a while!  My tumor markers are good, and have even gone down a little bit from 3 months ago.  We will definitely do another PETscan in October along with tumor markers since that will be the 6 month point. For now, I can breath a huge sigh of relief and enjoy the next 3 months. I didn't even realize just how uptight and worried I was until after I heard the voicemail from my doctor and started crying. She offered that we could repeat the tumor markers in 6 weeks if it would make me feel better, but she doesn't think it is really needed.  After my reaction to her call,  I knew that it would be better mentally /emotionally for me to just stick with doing them in 3 months and avoid the extra anxiety. 

I appreciate the continued prayers, and feel very blessed & so thankful for them and these results!

Saturday, July 27, 2013

An eventful week

The last 8 days have been very eventful with a combination of both ups and downs.  Last Friday, I left North Carolina to come home and was making great time until my car seemed to lose power and started decelerating.  When you are between Atlanta and Macon with traffic that is going 70mph+, that is a very scary thing.  Thankfully the tow truck came quickly, and the Honda service center in Macon was able to figure things out quickly and get me back on the road fairly quickly.  It was a sensor that controls the fuel and engine that apparently sent my car into a "safe mode", but decelerating on the interstate sure did not feel safe. This little adventure had me running about 4 hours later than planned and $300+ lighter, but at least I was still able to make it home.   Unfortunately, when I got home at 10:30 PM my A/C had gone out due to water backing up, but thankfully, my A/C company had it flushed out and running well the next day.  At least, I knew right away what that issue was, and it was covered under my maintenance plan.  I share a pipe with my upstairs neighbor and so it  normally happens a couple of times a year. Isn't it amazing though that things all seem to break at the same time?!?

On Sunday, I placed membership at Temple Terrace church of Christ.  I love my church family at University, but due to personal reasons felt that this was a move I needed to make. It was a very hard decision for me, but  I am excited about the change for many reasons also.  One of those reasons was just born on Tuesday.

Jon & Ashley  had their beautiful baby boy, Drew Grayson, on Tuesday night. He has had a little bit of a hard time regulating his blood sugar and bilirubin which has lead to spending some time in the NICU, but those things do seem to be getting better.  They are hopeful that he won't have to spend too much more time there.  He is absolutely adorable, and I can't wait to spend even more time with him.

On Wednesday, I had an interview and was hired to teach an on-campus class at HCC's Southshore campus.  I am very excited about this opportunity, and I hope that it might lead to more opportunities with them in the future.

On the downside, I have had to deal with more craziness from medical billing offices this week.  I don't understand how a bill that doesn't even get mailed until May 1st for a surgery the past December could be sent to collections by the end of May, especially when you've never been given an actual itemized bill that you've asked for.   I was basically told that it didn't matter that it doesn't make sense, and that their office won't talk with me about it anymore. Apparently, the date from service is all that matters not when the actual bills go out to you according to this office.  I don't have a problem paying what I owe if I owe it, but at least, explain to me why & how my bill showed nothing owed for 5 months then suddenly something was owed even though I've received no explanation of benefits indicating that.  Because they refuse to discuss it with me, I'm stuck with it on my credit report too.  Honestly, I think dealing with billing and the finance part has frustrated me more than anything else during this time with cancer.  I wish I could just throw the bills in a box and ignore them until I was having a day that I could deal with them, but sadly, that would probably just lead to more frustrations like I described above.

It was especially hard to deal with that this week.  I had heard other people describe it, but didn't really understand how much going for your  3 month, or whatever, check-up makes you anxious, nervous, and scared for a week, or more, before the appointment until being in the situation.  My appointment is on Tuesday, but I am just doing the bloodwork that day & meeting with the Dr.  I won't have any types of results until a few days later, which just makes it worse.  People have told me that it will get easier the further out from it I am, and I just hope that I get the opportunity to test that theory by staying NED for a while.    Here's to hoping that the only big event next week is the good one of  bringing baby Drew home!

Wednesday, July 17, 2013

Take that cancer stat

Today is my 1 year cancerversary, and all I keep thinking is "take that you silly cancer stat" regarding the average lifespan of stage 4 being 18 months.   It was right about this time last year that I got the call that put my sister & I on the road heading home from NC so that we could make the appointment that was scheduled for the next day.   I don't know what my bloodwork on the 30th will show, but I'm at least 2/3 of the way to beating that initial stat hurdle. Unlike then, when I had a gut feeling that I would be getting that cancer call, I feel at peace.  I have my side effects from the meds now, but I don't have that crushing fatigue that I had previously and now know was a symptom of the cancer.  I ask for your prayers that that will continue to be the case and the cancer will stay in remission for a long time.

I've been traveling the last week and a half, first with friends in Charleston and Myrtle Beach and now with family in NC. We've hiked to several waterfalls and to a beautiful mountain view, but I plan to take a "me day" today while the family goes hiking some harder trails.  A couple of possible adjunct opportunities have presented themselves in the last few weeks, and I have a phone interview with one of them this afternoon.   When adjuncting only, it is good to have multiple schools that you work for, as I do, because  each school may not always offer the class you teach or have enough students for it to make each time.  This summer has been much lighter on classes, and after this week, I will only have 2 online classes that I'm teaching until mid-August. This is quite a shift from the 5-7 classes that I usually have during the regular school year. While a little break is good to regroup, get some housework done, and get caught up with things, I'm really hoping that these opportunities will work out if they would be a good thing for me.  I'd appreciate your prayers on that as well!

It is always good to travel and see both friends and family.  I have always loved having this trip to NC with my nephews, and it is a wonderful bonus that my niece Lylah, & her parents, got to join us for a few days also.  Once I get home, it won't be too much longer, probably, before baby Drew will be born, and there will be a new nephew to enjoy.  Blessed to be able to spend time with all of them! Here are a few pics from this trip so far:


 






 

 




Wednesday, June 26, 2013

Just a year ago

It is a little bit crazy to me that this journey just began a year ago.  At this time last year, I was finishing up my mammogram and ultrasound, and little did I know, I was in for quite a ride. In the last year, I've had 2 biopsies, 3 surgeries, 4 PETscans, 6 cycles of chemo, and so much blood drawn that I might as well be supplying a vampire in addition to that mammogram/ultrasound.  Thankfully, I've also been able to take some cool trips to counteract the not so fun stuff.   It still isn't officially my cancerversary. That is July 17th.  I was in North Carolina at the time which really ruined that trip (to put it lightly), but since we have that NC week every year, I'm glad that I will always be doing something fun with family when the cancerversary comes around.  Wow, what a year!

Saturday, June 22, 2013

Crossing another off the list

The last few weeks have been very full, and I am thankful for every busy moment.  I am also so thankful that I got to cross off one of my big things on my bucket list by taking a cruise to Alaska. I'm so appreciative that I have friends who helped make that happen. There have been a few moments that I questioned my sanity at planning so many things this summer, but while on my Alaska/Seattle trip, I heard from another friend with metastatic breast cancer, who went into remission at the same time as me, that she is already out of remission. It was a sobering reminder of how quickly things can change and how much I need to live for and appreciate every moment, while taking nothing for granted.

Alaska was absolutely amazing. We were able to see both the north and south Sawyer Glaciers in Tracy Arm which were just beautiful. Probably the best day of the trip was our day in Juneau where we went to Mendenhall Glacier & walked to the bottom of a waterfall at the base of it along with going whale watching. The whale watching was amazing because we saw 10-14 humpback whales bubble net feeding.  Our time in Sitka and Ketchikan was good as well, and the trip was topped off by a visit to Craigdarroch Castle in Victoria, B.C.  Plus I can now say I've been to Canada as well. We stayed in Seattle for a couple of days, and I loved the Chihuly Garden and Glass museum in the Seattle center. The only bad thing about the trip is that I have struggled to get back on Eastern time which is why I'm writing this way too late at night, lol.  Hope you enjoy just a few of the pictures!  






This blog took me a bit longer than planned to get to because my computer decided to bite the dust the day after I got home.  I had been expecting that the computer's demise might happen sooner rather than later since I was still on my 5-6 year old laptop that had endured all the abuse of the dissertation.  It acted weirder than I would like a few times on the trip, and the day after I got home it began doing even crazier things.  Since I teach online, I have to have a reliable computer that is not going to freeze up for half the day or any other oddity.  At least, I was able to get a computer that was lighter than what I used to have, and all of my data was able to be moved over in less than 24 hours.  Four of the 5 classes that I am teaching right now end this weekend so the speed of getting back up and running to get back grading was critical. Speaking of that, I'd better get some sleep so that I am coherent enough to grade again tomorrow when I need to. Hope everyone has a good weekend!

Saturday, June 8, 2013

Diet and insurance

A few doctor visits ago, I asked my oncologist what type of diet I should be following since the recommendations are different for breast cancer vs liver cancer, etc.  She mentioned that with active stage 4 cancer the diet isn't going to "cure" it, but research on following a mediterranean diet seemed to be positive for cancer and many other health issues.   I looked into it  at that time, but really started trying to follow it once I got the word on NED.  The mediterranean diet is high on fruits and vegetables with a goal of 7-9 a day and is more restricted on meat saying you should have beef or pork only 1-2 times a month with fish or chicken a few times a week.  I have probably leaned more to vegetarian than it actually requires you to do.  It has been a month, and so far, I've done pretty well with it.  Due to some of my other health issues, I used to have to play a lot of games of "if I eat this, I can't eat that" that I've found don't have to be played with meat primarily out of my diet.  So, if you have any good mediterranean or vegetarian recipes, please share them with me.  I am trying to add more items to my menu.

I got some good news yesterday that my insurance has finally approved my appeal and paid for my surgery in February.  That was a huge ($20,000+ sized) weight off of my shoulders.  What a relief!

Nothing much more to share;  I am just so thankful to have that worry gone and be feeling well!

Wednesday, May 22, 2013

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! )