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.

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.

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 :)

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!

 

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!

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!

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: