Friday, December 21, 2012

Counting my blessings

 Since chemo on Tuesday, I have been feeling many of the normal side effects, but thankfully, there has been no reoccurrence of fever so far.  Though I didn't like the delay between these last 2 cycles, I do think that it has helped me to build some strength back and to not feel as bad with this treatment.  With the many bugs out there, I am trying to be pretty careful because my white blood cells did start out in the normal range, but definitely on the lower side this time.  

This year has definitely been a struggle and had some complications, but I wanted to take a moment to count some of my many blessings.

1)  I am so thankful for my family, both near & far, that have helped in so many ways.  I know that it has taken a lot of time, energy, and adjustments on their parts, but they have been such rocks for me.   Plus, I'm very excited about getting a new little niece sometime in February!

2) I have been blessed to have friends who somehow know just when things might  be hard and somehow reach out  to make me smile :)

3) The support that I have received from so many people and in so many ways is amazing!   The cards, prayers, calls, texts, and facebook/blog posts have been so uplifting.   Financially, the support of so many has been overwhelming and incredibly touching.  While, I've had at last check about $20, 600 in medical bills this past year, that burden has been significantly lightened through the kindness of so many.   I need to make sure to mention my appreciation for the 1213 Charitable Trust which did a $5,000 matching grant, and Chris Garrido who organized an amazing fundraiser.   I couldn't possibly name every person who was so generous in this post, but I want you to know that I appreciate it more than you can even begin to imagine.  

4) I appreciate so much the staff, nurses, and my doctor at Florida Cancer Specialists.  I don't know how they do it, but they are always in good spirits with a smile and kind word.  The atmosphere there is so calm which is something that I really need.  Dr. Cogburn has that same calm and kind demeanor, and I've been so appreciative of how she really listens to me, addresses questions, and provides explanations while giving me the opportunity to determine the best option for me without pressure.

5) I am thankful that what we are doing in regards to chemo, etc.  seems to be working and moving things in the right direction!

6) Most importantly, I am thankful that I can rest assured that  I am never alone, and that I do not have to handle any of this own my own.  It makes me think of the old Footsteps poem about how the two sets of  footprints are when He is walking beside you, but the one set does not mean that He left your side....those are the times He carried you.

Christmas Card Update/ Apology:    I had the best intentions of sending out christmas cards this year, but unfortunately, that just did not happen.    I hope that you will know that you are in my thoughts and prayers, and that I wish you all the best things possible both at the holidays and for the New Year!

Tuesday, December 18, 2012

#4 of 6

A few weeks late, but I finally got my fourth treatment today.  Hooray! (Or maybe I shouldn't be saying hooray about purposefully putting poison in my body? Such a weird thing to be happy about, but oh well, lol!)  It is nice to feel like I'm back to fighting, and it was also really nice to record a temp of only 98.2 at the doctor's office this morning.

The surgery seems to be healing well, and it definitely did the trick with the fever. I didn't realize how much running that fever was affecting me, but I have felt so much better since it has been gone!  Very thankful that the surgery does seem to have addressed the problem.  

After 5 weeks, I felt like I was back to day one in getting the chemo.  Since the infection kept flaring up throughout the first 3 cycles, I am curious/nervous about what will happen now as to whether the infection and/or fever will come back, etc.  I also wonder if the side effects will be different now or what to expect, but hopefully, I will feel better overall.

Okay, nausea is kicking in more so I better stop writing and get some crackers.  Hope everyone has a good week, and that you manage to avoid any last minute shopping craziness!

Sunday, December 9, 2012

Fever free!

The surgery on Thursday went well, and I was able to come home that afternoon.  It has been so nice to be fever free since the surgery!  I'll find out more about what was going on when I see the surgeon on Wednesday, but it seems to have worked.  This week will be spent recovering, and hopefully, the following Tuesday (12/18) I'll be able to get back to chemo.    I'm ready to get back to fighting!

Wednesday, December 5, 2012

Thanks & Surgery

Thank you so much to everyone who donated items, money, and/or time along with  all of those who came out to Cold Stone last night.  It was such a fabulous turnout, and it was wonderful to see everyone.  Thanks again to Chris Garrido for organizing it! 

Due to the infection that keeps recurring and the fever, I will be having surgery tomorrow morning.  The reconstruction will have to be removed, and we may readdress that after chemotherapy is done, depending on how things are with the cancer.  At this point, the most important thing is getting the rest of the chemotherapy treatments completed.  I will have to have a little bit of time to recover from the surgery, but hopefully, chemo will be able to resume on December 18th.  After 3 weeks of a fever and recurring infection, I am ready to do whatever is needed to get that taken care of and go back to fighting cancer.

Well, lots to do to get ready for being laid up and unable to lift more than 5 pounds again for a while, so I'm going to make this one short.  Thanks again, and I would appreciate thoughts & prayers for a successful surgery & recovery! 

Friday, November 30, 2012

Quick Update, Imerman Angels, & Ice Cream

A quick health update:  The skin infection is much better according to the plastic surgeon. I have to call him on Monday to report on how things are doing  to find out whether I'm actually cleared to have chemo on Tuesday, but he thinks it is likely.  I'm  waiting on word from my oncologist on the blood culture and the revised petscan as well, but I still have been running a low fever.   In general, I don't feel  bad, but the 12 days of a fever are starting to take a little bit of a toil on me.  At this point, they are just wondering if that is how my body is responding to the chemo versus it being something to really worry about.

If you know anyone going through cancer or a family member/caregiver that is helping someone with cancer, please let them know about the non-profit organization called Imerman Angels, A friend told me about them about a month or so ago. (Thanks Jess!) They provide one on one support for both cancer patients and caregivers/family members by connecting them with a mentor in as close of a situation to theirs as possible.   I was connected with a cancer survivor/mentor a couple of weeks ago, and it is really helpful to know that there is someone to talk to who has been through my same diagnosis and treatment.  Having a support system is such an important part of fighting cancer, and I think this is such a great resource.  Please pass the word on about this organization!

If you live in the Tampa area,  please come out for some ice cream on Tuesday, 12/4 at the Carrollwood Cold Stone Creamery on North Dale Mabry between 4-8 pm.   I am blessed to have some long term friends from middle school/ high school who have put together this fundraiser, and I appreciate it more than I can even begin to express.  Some of the items donated include 2 tickets to Sea World, Derrick Brooks Autographed football, Phil Esposito autographed photo, Gator Golf set, over $1,000 in salon treatments and more.  If you can make it, please come out and enjoy some ice cream!

Tuesday, November 27, 2012

Partial results but promising

I was all prepared to get my petscan results today at the oncologist.  When my oncologist came in, she had to share the news that we only had partial results right now.  My original scan was done at a hospital, and yesterday's scan was done at one of my oncologist's offices.  Unfortunately when the hospital sent over the disc of images so that they could be compared..... it was blank. (Yes, this is exactly my normal type of luck, I know!)  Without the comparison, we don't know for sure how the number or sizing of lesions compare.

In a petscan, the oncologist said we are looking for 3 things that are positive signs: areas have disappeared,  have shrunk, and/or  the uptake value has reduced.  The one thing that we do know is that the uptake has reduced which is at least promising. (For those with medical knowledge, I apologize in advance as I probably butcher this explanation).  In a petscan, they inject you with a radioactive tracer that goes to areas of higher metabolic activity such as cancer, and then those areas get assigned an uptake value depending on how bright they are, etc.  A normal liver has a standardized uptake value (suv) of 2-3.   In my original scan, all of the lesions had an suv  of between 6-13.  In this scan, all of the lesions were between 4 - 6.1 which seems to indicate that things are promising and going the right direction.  I'm just being cautiously optimistic until we know for sure how everything aligns with that original scan and that there are no new places, etc.    Another disc was requested, and my oncologist will call me once she receives the amended report.  Once we have the whole picture, I will feel a lot more comfortable!

I'm still dealing with the low fever and some signs of infection.  I will see the plastic surgeon tomorrow late afternoon, and hopefully, the 3 days of the new antibiotic will have begun to work their magic.   I am also waiting on a blood culture just to make sure that the infection we're dealing with isn't in the blood, but in general, the oncologist seems to think that I feel too "good" for that to be the case.  I have to agree with her.   I've got the fever headache/neck ache, but other than that I don't really feel bad.  Please continue those prayers that the infection will go away quickly and without requiring any additional surgery or anything like that.    I appreciate so much the prayers, cards, messages, and thoughts!  They mean so much, and always brighten my day!

Sunday, November 25, 2012

Frustration & Infection

This past week, I've battled a fever that would come and go, primarily flaring up at night.  On Tuesday night, I had an earache so it was assumed that it was the cause.  It seems during chemo my body shows the fever, and then 24 hours or so after, I finally get some clue as to what may have caused it.  The oncologist had given me antibiotics on Monday when the fever first began so we thought I was in pretty good shape.  Though my temperature had gone high the night before,  my temperature was controlled on Thanksgiving Day so I was able to still enjoy the day with family, even though it got worse again that night.

I got about a 36 hour reprieve with no fever, and then it came back again last night.  This afternoon, I realized that I again was showing signs of a skin infection and having some problems at one of the surgery sites.  The plastic surgeon changed my antibiotic, and hopefully, we can get this under control in the next 48 hours.  If not, he is concerned that we may need to do surgery to remove the reconstruction as the concern is that the infection has gotten into that.
Besides the worry about a more serious problem, I am frustrated because it pushes back chemo for another week. That puts chemo going into the new year, and I had really hoped to be done with this part by then.  I know that it is not safe to have chemo when things like this are going on, and so it is for the best, but I just really need that light at the end of the tunnel.

I have my PETscan tomorrow, and since it is at one of the offices of my oncologists, they will also be doing blood counts and a blood culture to ensure that the infection isn't in the blood.  I know that infection is a normal part of the whole chemo process, and I won't be the first or last to go through all of this.  I'd just really appreciate thoughts & prayers that the antibiotics work and the infection stops before we have to resort to surgery or anything like that.  If you could also pray that the PETscan results would show that it has stopped growing and/or shrunk, I'd really appreciate it.

Tuesday, November 20, 2012

Thanksgiving Week

I got to begin this week with a couple of visits from a friend from Alabama.  Even though I was having to be careful with my counts, she was able to stop in for a few hours on a couple of different days, and it was wonderful to see her.   I am so thankful for long-time friends that you may not see very often, but whenever we do get together, it is like no time has past at all.  

This treatment cycle has had a few hiccups, but generally has gone okay.  I began to run a fever on Monday afternoon, and the oncologist called me in an antibiotic.   Today, I had my bloodwork done.  I am pretty low on white blood cells, but thankfully, just above the "danger zone" of neutropenia.  I've also been anemic, and the oncologist has been concerned with that. So, today I've gotten an iron infusion to hopefully help there.  Fatigue has been pretty strong this cycle, and I hope that the iron will help.  I was warned last night about the infusion, but I wasn't aware of what a long process it would be.  I've been here 4 hours at this point, and I probably still have about an hour to go.  I wasn't exactly equipped with lunch and stuff to be  tied up quite this long.  Again, I have to be thankful for a good friend who answered the "can you bring me lunch call?" once I realized what a long process it would be.   

Hopefully, the antibiotic & iron will do their jobs, and the rest of the week will go smoothly.  I know that I have so much to be thankful for, including the fact that Thanksgiving falls on week 2 of the cycle so I should be able to enjoy it!  Hope that you enjoy your Thanksgiving!  

Wednesday, November 14, 2012

At the chemo halfway point

I'm halfway done with chemo now that I had my 3rd treatment yesterday.  That treatment was a little rougher than last time, but that is to be expected, I guess.  Each one supposedly takes a little more toll on the body.

My 2nd set of  tumor markers that were taken 11/6 had 1 type coming down which is good, and the other type raised a little bit.  My oncologist wasn't too worried about the rise as the original tumor markers were done 3 weeks before chemo actually started. We don't know how much that one could have risen before chemo even started.  Also, she said a rise isn't unusual since both live & dead cancer cells show up in the tumor markers.

The more important test will be the pet scan that I have in 12 days.  That will show us whether the tumors have grown, stayed the same, or shrunk.  Prayers that they have at least stopped growing, but hopefully shrunk or disappeared completely.    I am already nervous about this scan, and it is 12 days away.  I know that there is nothing that I can physically do to change the outcome of that scan, but I can at least ask for the prayers to continue and the meds to work!

Even after the 6 rounds of chemo are done, I am still facing some more surgeries and what they call "hormonal therapies".  Two months ago,  the oncologist had said she wanted to try some shots and see how I do before progressing to removing the organs that make the hormones completely.  To me as long as those organs are in there, there is too much risk, but I'm not a doctor.  I was very happy to hear her say yesterday that she would like for me to go ahead with the surgery as soon as possible without the shots, and that it would be safe to do within a few weeks of chemo completing.  This way we get the offenders out & can use some better therapies since I'll be post-menopausal.  I have a consult later this month regarding  surgery, and we'll see when they will actually plan it for.    I know this decision wouldn't be for everyone, but with my estrogen+ level in the tumors at 90%, I just don't want to risk any extra estrogen being in the body.   Being happy about having a surgery soon may also sound a little nuts, BUT  it just seemed like the different treatments and upcoming surgeries were making this whole process never-ending with no light at the end of the tunnel. So, this just helps me feel more confident that things will get on an even keel eventually, and we can really see how the cancer responds with that estrogen supply being cut off.

I mentioned some side effects a few weeks ago, and I still have those.  Apparently Levaquin is becoming my new best friend with each treatment as I needed it again today.   I know that I am fairly lucky in the grand scheme of possible chemo effects so far, but I have added a couple of new, annoying ones.  The first is that 6 days ago, my legs/angles/feet apparently decided that they wanted to look like elephant legs and have stayed swollen like crazy. This could be from the chemo, steroids for nausea, or both, but have I mentioned how much I HATE STEROIDS!!!!  The oncologist gave me a water pill, so hopefully that problem will be solved soon.     The other one is also just annoying as I am having crazy weepy eyes.  No eyeliner can stay below my lashes because it ends up streamed down my face, lol.  Apparently weepy eyes can actually be caused by dry eyes.  So, I guess I'm adding eye drops to my medicine schedule.    Things could be much worse, and I am just happy that I'm avoiding most of the  major, serious side effects that could go with type of chemo.

It's been 2 hours so I better do my pre-emptive eating strike so I keep the nausea away.  Hope everyone has a good week, and please continue to remember me in your prayers!

Wednesday, November 7, 2012


Whew! I feel a huge sense of relief!   Yesterday, I did my bloodwork, and thankfully the white blood cells were high enough to not be in that neutropenic danger zone.   I was happy about that, but still didn't feel like I would be really out of the woods & okay with this cycle until the plastic surgeon appointment today.    Thankfully, he says everything is looking good, and I am okay to stay on schedule with chemo for next week.   I didn't realize just how stressed out I had been feeling until after both of those appointments were done.  It may seem silly, but almost every appointment with the oncologist and plastic surgeon had brought some type of bad news, problem, or complication.   I now feel like I can breathe, and hope that this is the start of some appointments with good news and a pattern of things going well.  

The plastic surgeon also finally cleared me to  do real cardio and lifted the "you can walk, but don't sweat" exercise restriction.   I'm still not allowed to do repetitive arm motions like lifting weights b/c of the possible damage to the scars that can come from chemo, but that is okay.  I am SO very excited to be able to get back on the elliptical, treadmill, arc trainer, etc. and actually work out.   I know I may be crazy to care about exercising while in chemo, but it is just one more way of being able to get another little piece of me back.  Plus, my being slightly crazy is not anything new, lol!

Please keep the good thoughts and prayers coming!  I really hope that things will go smoothly, and I'll be able to stay on track for the last 4 treatments.  

Saturday, November 3, 2012

Random Musings

It is 5 am, and I am not sleeping when I should be...... so I figured I would share some random thoughts.

1)Speaking of being up at 5 am,  I really dislike what steroids do to my sleep whether it is low dose like they have me on now for nausea or higher doses like I used to have to be on for lung stuff.   I know that they serve an important purpose, but they automatically send my sleep into a tailspin.  There is nothing quite like spending 3-4 nights where you sleep for 2-3 hours then are wide awake for 2-3, maybe go back to sleep for a couple, etc. only to spend all day tired and then be wide awake when it is time to go to sleep for the night.  On the plus side, I've gone through clothes, cleaned my desk, done filing, and gotten other things done during my wide awake in the middle of the night sprees that probably would have been put off otherwise.   Last night was my last dose so sleep should be coming back to me soon, yeah!

2) My skin and the chemo do not like each other.  The oncologist warned me on Tuesday that it could flare back up and/or that is a side effect for some people, and gave me an antibiotic just in case.  By Wednesday, when I went in for my white blood cell booster shot, I was already having to start that antibiotic.  I'm very thankful she was proactive, and the test will be what happens when I do have the lowest counts in the next few days.  At least, I already have an appointment with the plastic surgeon Wednesday so if it does get worse we can take care of it quickly.

3) Losing your taste is a very strange phenomenon!  Everyone warns you that it will happen, but it is still bizarre to sit down with oatmeal,an egg, or some other food like you do every other morning and it suddenly have no taste at all.  I am not a foodie by any means, but typically, I do like what I eat to taste like something.  Weirder than having no taste is when food actually tastes bad.   I have discovered that anything diet or artificially sweetened tastes like metal, which I could kind of expect since I've always thought they have weird aftertastes anyway,  but even crazier is when foods like pizza taste like metal or just really wrong.  Of course, maybe if my comfort foods like that taste bad then I'll be able to stave off the other dreaded steroid side effect of weight gain.

4) The other thing people warned me about, but I didn't really understand is the heightened sense of smell.   It has only been the smell of a few foods that make me go running for the nearest exit as quickly as possible so far, but it has been a weird grouping of them:   a vat of pickles in a sandwich shop, fajitas, and popcorn.   Two of those three are pretty easy to avoid, but I never realized how many restaurants have fajitas on the menu before.   It will be interesting to see if other things are added to the "bother me list" as I have more treatments, but I apologize in advance if I walk in to a restaurant with you and say we have to change location or go running from the table when someone else's food is brought nearby.

This is such a weird journey, but as long as all of these things are happening, I do know that the chemo is trying to do it's job.   I might dislike some of it, but at the same time, I'll gladly deal with the side effects to get the cancer under control.   Well, I'll end the random musings and see if I can actually fall back asleep for an hour or two now.   Hope everyone has a wonderful weekend!

Wednesday, October 31, 2012

2 Down, 4 To Go

This past weekend I tried to be very careful about exposure to germs so that this week's chemo would be able to go as planned. My chronic fatigue kicked in on Sunday to help me with that a little bit more, but it was the first bad fatigue I'd had since my surgery.   I'll definitely take 1 day out of  9 1/2 weeks compared to the 1 day out of 7-10 days that it had been happening in the last couple of years.

Everything stayed cleared up, and I was able to have chemo as scheduled yesterday. In the first cycle, I didn't eat during treatment which allowed the nausea to get ahead of me too much.  Thankfully, I learned from that mistake this time.  I came prepared with some crackers, and dad brought me a Panera soup that I knew I could eat.  It definitely helped!  I did not get as sick on day 1 this time, but nausea is apparently my not-fun friend for the first few days. I can hopefully keep it in control with the anti-nausea meds and doing like a pregnant woman warding off morning sickness and keeping crackers handy at all times.  I'm supposed to be drinking lots  of fluids, preferably water , but water makes me feel nauseous.  Does that happen to anyone else?  I can drink ginger ale or coke just fine, but plain water is a no go.  Maybe adding in crystal light will work?

My white blood cell count is starting a little higher than it did for my first treatment, but I was warned that it would probably still drop as much as before.  Since that would still put me in the neutropenic range again (where your white blood cells are so low that you can't fight off any infection), I am going to be very careful during the worst area of that drop-off time, which are days 6-9 of the cycle.  I will be getting the white blood cell boosting shot again, and  I go in for bloodwork on day 8 to see what the WBC's are really doing. A good thing that comes out of the infection last time is that I know the shot is kicked in and WBC's are better by day 10 even if they are still low in that day 8 bloodwork.

Well, I better go take my next anti-nausea pill. I've been told to follow that 3 medicine schedule like a "religious experience", and since it worked last time, I plan to do just that, lol!    Hoping that I will keep most of the other side effects at bay or at least as minimal as possible.

Thinking of everyone in the areas hit by Sandy, and I hope that you are safe and had no  or minimal damage!

*** Oh, almost forgot -- I did get some good news from the oncologist yesterday.  We had done a circulating cancer cells in the blood test to see if we could use that as a method of seeing how treatments were working.  Bad news is that won't work for us.  Good news is that there were 0 circulating cells.  Woohoo! There are no cancer cell conga lines going on in my blood!

Friday, October 26, 2012

Thank you!

To all those who've read and/or shared my blog, donated, sent cards, comments or messages, prayed, or shown support in some other way, I just wanted to say THANK YOU!  It means so much! It has been such a help to focus just on getting well and know that I have a whole sideline of people rooting for me.  There is still a long path ahead, but I wanted to take a moment to let you know how much you've helped me in so many ways!

Tuesday, October 23, 2012

Clearing up and Falling out

I went back to the plastic surgeon today, and he said that the infection was clearing up really well.  As long as it doesn't take a step back once I finish the antibiotic tomorrow, he actually went ahead and cleared me to do chemo next week.  That is sooner that he originally said.  I'm trying to take it one day at a time, which as most of you know is pretty hard for me :), but hopefully, things are heading the right direction with that side of things. 

The oncology nurse had told me that on day 14 the hair would start falling out, and fall out it did on Monday.  I knew that I had a thick head of hair, but I really had no idea just how much hair I had until yesterday and today.  Mine came out more like I was shedding rather than in large clumps, but by this afternoon, I knew I needed to shave it on off tonight.  My brother-in-law and sister came over to help me with it, and we were able to have some fun with pictures as it came off.  Most of those are not available for public consumption, but it made me laugh instead of cry while it happened!   Here is a hair almost gone shot, but with one of my new caps on - 
I have several wigs with one that I got through the free wig program at the American Cancer Society, a wonderful friend who loaned me one that she no longer needed, and a couple that I bought.  I decided to have my sister take pictures, and I am curious as to which you think looks best.   I may end up changing them out depending on my mood or clothes, but decided to have a little fun with it in the meantime.  Let me know which you like most!   


Friday, October 19, 2012

Another setback.....

I am getting frustrated with this one step forward, two steps back dance that I'm doing with my treatments and healing.   On Thursday, my fever went too high, and I had to go in to the doctor to get my blood work checked.  My white blood cell counts were up, and I was no longer neutropenic thankfully.  Since I didn't feel bad, we weren't sure what infection was going on exactly, but they put me on a heavy hitting antibiotic.

Last night, my left arm  & side were hurting more than normal, and today I had to go in to the plastic surgeon due to some problems.  I have an infection on my left side in the surgery area that we are really hoping is limited to the skin, but apparently, that is what was causing the fever.  The antibiotic I have should work on it.  I will have to see the plastic surgeon as least twice more over the next couple weeks and be completely cleared up before he will allow me to return back to chemo.   I don't want an infection to go crazy as that could delay things even more, of course, but I finally felt like we were fighting the cells in the blood/liver.  I have this crazy image of cancer cells having a party in my blood, and I hate the idea of giving them more time to fiesta.  I just want to kill them, not give them party hats!

Please pray that the antibiotic will work and that my body will completely clear the infection so that I can  go back to fighting as quickly as possible!


Wednesday, October 17, 2012

Low white blood cell count

This weekend, I seemed to really turn a corner in energy and strength from the surgery and biopsy.  I actually could say on Tuesday that I was feeling the best I had since before surgery.  I had been able to exercise daily, get out for some meals with family & friends, and attend church on Sunday morning.  So, I thought I was doing great (and still do)! 

After doing my blood work yesterday, the nurse came in and asked how I was doing in a very concerned voice.  She was surprised when I said I was feeling so good because my blood work apparently showed I should not be.  My white blood cell counts were pretty low, and I was showing as being moderately neutropenic.  Apparently,  my white blood cell counts were on the lower end of normal to start with last week as well.  Since I was feeling well, they opted to not put me on antibiotics but did caution me about large groups and avoiding hugs/contact, being careful with food, and described at what point I should call if I did start to feel bad.  We are hoping that the shot given to boost white blood cells would start to take effect by today.  It supposedly can take 7-8 days to kick in, and yesterday was just day 7. 

As luck would have it, today I feel congested, but I don't have a fever or any other side effects.  Hopefully, I will be able to avoid truly being sick, and this is related more to the weather and allergies.  This has been a bit of a wake-up call, though, because I know I am more prone to catching things.  Since you supposedly get progressively worse with each cycle, I'm a bit worried that if I'm already low on cycle 1 that I need to be extra vigilant in the future.  As much as I don't want to be a prisoner in the 4 walls of my house, I am going to probably need to be more cautious during the time when I know the white blood cells will be going down even if I am feeling pretty good.  

I'd appreciate any thoughts/prayers that this congestion will stay something minor, and that I will have good blood work and be able to go ahead with chemo this coming Tuesday.    The prayers and support that I have gotten from everyone has been overwhelming, and I appreciate it more than you can know.

Wednesday, October 10, 2012

Nancy’s Financial Story

As many of you may know, Nancy had been working full time as a middle school band director for 11 years. Previous to her cancer diagnosis, she had some serious medical issues involving her lungs, digestive and nervous system, and she had to go on medical leave while she was pursuing a diagnosis. She had large medical bills during this time, but she was able to manage them because she was still under the school system’s insurance, and her health seemed to be improving greatly. Since Nancy decided with the help of her doctors that she could not continue at the middle school, she resigned from the public school system knowing that at the end of June she would lose her insurance benefits. After being turned down repeatedly by other companies, she was finally able to secure a high-deductible, high out-of-pocket group insurance policy through a professional music organization in March. However, at the end of June, she found the lump in her breast.

Nancy’s insurance policy has a $3,500 deductible and an $11,000 out-of-pocket, which she met very quickly, and her plan continues to charge a $200 facility access fee and $750 in hospital fee/day even after the out-of-pocket maximum is reached. She also has $4,600 of genetic testing that the insurance will not cover. In January, her $3,500 deductible and $11,000 out-of-pocket will begin all over again. With her current diagnosis, she will be facing continuing treatment and testing next year and likely for the rest of her life, and after a cancer diagnosis, no other insurance will accept her. Nancy is determined to keep working as much as possible, but her current jobs only take care of her normal bills. As much as mom, dad and the rest of us siblings would like to pay for all of her medical expenses, we would not be able to make much of a dent.

I have personally seen what an amazing impact giving can make as many people reached out to my wife and I after the Nashville flood destroyed our home over 2 years ago. Nancy is an amazing, Godly woman that has put all of her trust in our Lord. Please consider helping her in some way. Even a little can go a long way.

We have also just learned that for every dollar donated to Nancy, will match up to $5,000.

Please click the donate button below to make a donation through PayPal

Or you write checks made out to Nancy Barlar.

Checks can be mailed to:
Nancy Barlar
@ Florida College
119 N Glen Arven Ave.
Temple Terrace, FL 33617

Tuesday, October 9, 2012

And now I'm a stage 4

I am sitting here getting my first chemo treatment and figured I would go ahead and update. The biopsy did confirm that the liver spots are breast cancer of the liver. There is nothing quite like the feeling of going from a stage 1 to stage 4 basically overnight.  At least I have had a little bit of time to prepare. We will do the chemo plan that was set-up last visit, and hope that it will do some combination of halting, shrinking, and/or removing of the various spots. With it being cancer, it is better that it is metastasized breast cancer since it will respond to the same treatment regardless of the location in the body.  Once the 6 chemo treatments are complete, then we will begin attacking it through hormone therapies/treatments as well.

As much as I disliked today's news, at least the waiting is over, and I feel like I really am fighting these stupid cancer cells now with the chemo.  I appreciate all the thoughts & prayers over the last couple of weeks, and I hope that you will continue them.  I will try to remember and have strength from the following:
Psalms 62:6 - "He only is my rock and my salvation, mynstronghold; I shall not be shaken"
Psalms 46:10 - "Be still and know that I am God"
Joshua 1:9 - "Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you whetever you go"

Thursday, October 4, 2012

Liver biopsy

The liver biopsy was done yesterday. Though "twilight" meds were used, unfortunately, I never fully went out so I remember a bit too much of it. The nurse had warned that the 24 hours after could be very painful and that patients often described it as getting kicked repeatedly in the side.  That is a pretty accurate description for how I've felt in the last 24 hours or so. It is starting to ease off some so hopefully I'll be back to normal tomorrow. We'll find out results on Tuesday (10/9) and begin chemo then too.

Thank you for all the prayers & comments both here and on facebook along with cards. I don 't always reply to each one, but I do read them all and appreciate each one!

Friday, September 28, 2012

I had my consult for the liver biopsy today, and I am so glad that I will knocked out for that procedure.  My actual biopsy will be done on Wed. 10/4.  I also saw the plastic surgeon today, and he thinks the infection is healing well and should be okay by the time of chemo.  Hopefully I won't see him again for a month.  I will see the oncologist, get the liver biopsy results,  and begin chemo on Tuesday 10/9 if things go as planned.  In the meantime, I will continue to hope and pray for the best while preparing for the other, and hopefully have some time to escape from thinking about everything this weekend.

Tuesday, September 25, 2012

Bad news

It is never good when a doctor comes in and looks at you with the "I'm sorry" eyes.  Hopefully, you've never encountered them, but some of you probably know the look, unfortunately.  I found out today that my PETscan showed multiple areas in the liver that have as the oncologist put it a 95% probability of being the breast cancer and a 99% probability of being some form of cancer.  I will be having a liver biopsy as soon as they can get it scheduled. (Doesn't that sound fun?)  I'm hoping and praying that there is some way that this falls into that 1%, but if not this definitely changes things as it moves the cancer from curable with chemo wiping out any possible random stray cell to only treatable to try to suppress growth and shrink tumors as much as possible.

There are 2 aspects of this finding that are scary to me.  The first is that the general guidelines for stage 1 breast cancer is to do a chest X-ray and bloodwork, but if those don't show anything, you are supposedly "good".  I'm thankful that my oncologist did do the PETscan because she felt it was important to have every possible bit of information before starting chemo.  The second is that there are spots there but my blood work is clear, and I have no symptoms of liver problems. Again, I guess I can just be thankful that everything was found in the timing that it has been, and that it still is treatable.  But right now, the silver linings are a bit harder to see through the tears that keep falling.

I'd really appreciate any thoughts and prayers for strength, a positive attitude, and falling into that 1% if all possible.  

Friday, September 21, 2012

A little setback

As luck would have it, I've had a little setback with one of the surgery sites getting a small infection or possibly beginning a seroma(sp?) and running a low-grade fever.  Antibiotics have been called in to see if that will clear it up, and I go back to the plastic surgeon on Friday so that we have a better idea of what is going on.  If it is an infection, then it was caught early at least.  This will delay the chemo for a couple of weeks.  There is a part of me that is like "whew! a little reprieve", but then that just puts me back to waiting which is the worst part of all of this stuff.    Just trying to remember that it is better that it was found now so that we can deal with it before the chemo makes all of my blood counts and system go wacky.   I will still go in to the oncologist on Tuesday to get the PETscan results and to figure out what to do with my low iron.  They wanted me to take iron pills with vitamin C pills, but that isn't possible  because of my bladder autoimmune.  At least maybe this setback will give us time to get that issue better before the chemo starts too.

Please pray that this will resolve quickly so that this whole process can get back on track and BE OVER soon!

Thursday, September 20, 2012

So I've gotten my "chemo haircut", and I'm glad to know that once my hair starts growing out some once chemo is done that I will like the short hair okay.  Hair seems like such a silly thing to worry about, but if that keeps me from stressing about other aspects I'll take it.

This has been a crazy week.  I have definitely been feeling stronger which is a good thing since I've had lots of appointments.  I am just so happy that I was cleared to drive again.  I am a horrible passenger, and hate to ride with others, so the 3 weeks & 5 days of being unable to drive was torture both for me and for those stuck having to drive me everywhere!   I had my PETscan on Monday, and I should find out those results from the oncologist on next Tuesday before the chemo treatment.  Still keeping fingers crossed and saying prayers that the scan will be clear.  Tuesday was the plastic surgeon appointment that cleared me to drive but still not to lift more than a gallon of milk or to sweat when exercising or to do much more than walking. This is Florida so that means being very creative to get some exercising in and still meet that requirement.  Wednesday was meeting with a cardiologist since one of the chemo drugs can cause heart problems, but thankfully the echocardiogram that was done today shows that everything is starting off in good shape.  Throw in a dentist appointment and eating with some people a couple of times, and I feel like I've done a lot.

I'm glad to have been busy this week, because I'm back in the waiting game with waiting for the chemo to start.  That can get a bit overwhelming so I've had a few moments, but I know it will pass just as everything else has.  I know that chemo won't be fun, but hopefully the anticipation is worse than the reality and it will go as well as it possibly can. At least I'm already armed with a bunch of meds for side effects if it does go badly.   

I'm hoping to get to church this Sunday and to have some fun this weekend before the chemo zaps my energy again.   Hoping  I will remember to be still & that this too shall pass, and a happy weekend to all!

Wednesday, September 12, 2012

Getting ready for chemo

I went to the oncologist yesterday and found out more about my pathology, etc. Due to multiple factors, it does appear that having aggressive treatment would be beneficial.  So now, I'm making PETscan and echocardiogram appointments so that we have those results prior to chemo starting.  As long as everything go well in the next week or so, I will start chemo on Tuesday 9/25.  I will have 2 drugs, adriamycin and cytoxan, once every 2 weeks for  four cycles, and then have 1 drug, taxol, once every 2 weeks for four cycles.  So hopefully I will be through with this part by early January if things go as planned.

Besides the medical appointments, I've also got a haircut appointment next week. I figure since I don't have to worry about the "growing out" and maintaining phases, I can get a short haircut that I've always wanted but worried that I wouldn't like.  Hey, if I hate it, I'll only have to deal with if for a few weeks.  Plus, it will be easier to do my wig shopping with short hair, and so I get to try new hairstyles on that way too, lol.  

I am definitely getting a bit stir crazy in my house so I'm glad that I should be cleared to drive by next Tuesday at the latest and can get out a little bit.  Of course, right now I can't last very long out of the house even with others driving, so I probably won't really be painting the town red even then, but right now even the ability to run to CVS or anywhere sounds wonderful.

Thanks again for the cards, messages, calls, and prayers! I really appreciate them, and would appreciate you remembering me as I get ready for this next phase of treatment!

Friday, August 31, 2012

Yeah for early stage!

Today I saw my surgical oncologist and got as good of news as I could hope for.   There were 2 areas of breast cancer with the largest being at 1.9 cm so just squeaking under the line to be a stage 1. The margins and nodes were both clear which was great. Apparently, there were extensive areas of ductal carcinoma in situ with the largest being 3.6 cm so again I am so grateful for taking care of this when we did.  If that one had become invasive, things could be very different.  They also do a grade to describe how different the cells are from normal cells which for me was high grade/ grade 3.  While this means that the cells were dividing more rapidly, it also may mean that chemotherapy will be more effective on it since chemo tends to target faster dividing cells.  (This is how I've seen and heard it explained at least.)  Hopefully, I'll have an oncology appointment scheduled soon to know more about the chemo side of things.

I look at those numbers above and think about how lucky and grateful I really am that things were caught when they were and that I had a proactive primary care physician and surgical oncologist.  I also have to express again how much I appreciate the cards, thoughts, and prayers.  I've of course had a few "weepy" moments in all of this, but  knowing that I am in the thoughts and prayers of so many does help to keep me strong.  I hope that everyone has a wonderful weekend!

Tuesday, August 28, 2012

5 Days out

So it has been 5 days since the surgery, and honestly, I can remember very little of that time.  If you came by or called and there was some super important piece of information that you shared, please share it with me again because the last 5 days are such a blur.  I'm sorry about that, but thankfully, that means I was on some good pain meds at least.

I had my first post-op appointment today, and everything looks good so far.  I seem to be getting a little better each day which is all I can really ask or hope for.  I will find out more about the stage and next steps for the cancer on Friday morning at that appointment.

I wanted to thank everyone for the thoughts, prayers, calls, cards, messages, food, magazines, visits, and various other things.  It seems like every time I was having a rough moment before or after the surgery then I would get a message, call, or something that would brighten my day.  It has been very uplifting, and I appreciate it so much.  

I'll be moving more to ibuprofen and away from the "good pain meds" over the next few days or weeks so hopefully I'll be much better at remembering everything that happens as I move forward in this process. Please continue to keep me in your thoughts and prayers!

Friday, August 24, 2012

Nancy is home, resting in her recliner.  Due to insurance issues, the doctor discharged her from the hospital after a 23 hour stay with a request for her to come to his office.  He reported that as insurance would not authorize more than one day, they worked hard to discharge her prior to 24 hours so she did not incur a large out of pocket bill.  Although it's scary to come home so quickly after such a major surgery, (without even having eaten solid food yet no less!), there is definitely no place like home.  Nancy's surgeon reported that he was happy with how the surgery went.  She's home with antibiotics, pain meds, anti-nausea meds, ready to begin the recuperation process.

We are all thankful for the answered prayer of surgery without immediate complications.  We want to thank all of you for your continued prayers regarding the outcome of the pathology reports,  Nancy's healing and well being during chemo treatment, and peace of mind and heart throughout the process.  Thank you also for your many expressions of concern and love both to Nancy and those of us in her family through visits, calls, texts, and messages.  The love of so many is heartwarming to us!  Hopefully in the next few days, Nancy will feel up to keeping you posted herself, but until then we will let you know of any changes.

(Nancy's sister)

Thursday, August 23, 2012

Update on Nancy

Nancy's surgeons reported that she came through her surgery well.  She is now awake (although groggy) in a private room.  She tells us that she feels like she's been hit by a truck, but hopefully the pain medicine will assist with that soon.  The surgical oncologist reports that her sentinel nodes look clear; however, final pathology results are pending. They will also know more about staging the cancer once the pathology is completed, but no surprises were reported.   A port was placed for chemo, which should begin once some initial healing is completed.  The prayers of so many are greatly appreciated by Nancy and all of us in her family.  She will continue to need your prayers and support for quite some time.  We are thankful that everything seems to be going as well as could be expected so far.  Thank you all again for your encouragement, support, and most of all lifting Nancy's name up in prayer!

(Nancy's sister)  

Friday, August 17, 2012

Those dreaded words...

A month ago today, I heard those dreaded words...."the biopsies did come back as cancer", and life has been one storm after another ever since.  I'm striving to remember Psalms 46:10 - "Be still and know that I am God" at all times, but especially when I begin to get overwhelmed.

In that phone call, the doctor kept saying he was sorry and that he was surprised that it was cancer, but I  actually was not surprised. Besides the fact that there is a family history of breast cancer, I had just been feeling slightly off and more fatigued than seemed right with the rest of my health.   My life has been a bit stormy health wise for several years anyway, but we had finally figured out what was going on a year and a half ago. I was diagnosed then with chronic hyperventilation syndrome which finally tied in all of the crazy lung, nerve, and stomach problems.  After speech therapy that re-taught me how to breathe and talk,  I'd slowly gotten better and better.  My body's natural reaction to stress and/or various things was still to hyperventilate so I did have to be careful, but though I felt so much better, the fatigue seemed to stay the same or even get worse in the last few months.  I have had to really watch my breathing through all of this new cancer stress as I often catch myself breathing and speaking incorrectly.  

I had actually grown to be thankful for all of the craziness over the last two years because I did end up in a different, but probably better for my health, job and life situation, and I think that I have grown to be a stronger person physically, mentally, and spiritually.  When I first got this news, I did have a few thoughts of "why now, I've finally gotten so much better".   But then, I again began to realize how "good" this timing actually was: 
1)  I work primarily online now and should be able to continue doing some/ most of that through all of the treatment, and thankfully, people are covering the on-campus classes for me
2) My school district insurance ended on 6/30 and I first went to the doctor about a lump on 6/23. Thankfully, I had been able to get my own insurance policy through an organization that I belong to back in March.  I can't imagine having to deal with cobra and trying to find insurance now.  My policy is high deductible/high out-of-pocket, but it is so good compared to the alternative.
3) The previous illness taught me  how to communicate and be an advocate for myself with medical personnel along with providing me an internal strength.
4) As a silver lining to all of this, I'll get some quick weight loss and change to a smaller shirt size.  I much prefer thinking about it in this way. :)
5) Even though there are multiple masses, they believe that they are all small so it was still caught in an early stage hopefully.

Getting the actual surgery scheduled has been a storm in and of itself.  Originally, the doctor was going to do my surgery on 7/24, but with my weird history, I really wanted a 2nd opinion which that surgery date did not allow for.  I also had very mixed emotions about the plastic surgeon that I first saw so postponing gave me a chance to see a 2nd plastic surgeon as well.  After getting confirmation from Moffitt that they would do the same treatment, I decided to go with my original surgeon and  the 2nd plastic surgeon, and the surgery was pushed back to 8/2. The hospital canceled that surgery because it would have meant extending my surgeons' time in the operating room which they wouldn't agree to.  With a surgery that takes 2-3 hours for each surgeon, I think it might be a blessing in disguise to not be their 3rd or 4th surgery of the day, but that made me have to "hurry up and wait" some more. Both of my surgeons had some time out of town in August which pushed surgery back further, but the surgery is finally coming up on 8/23.  I know that it has really only been a month, but it feels like forever.   I will probably have to have chemo after that, but the path ahead is primarily based on what exactly they find in the actual surgery. 

   I am trying to rest assured in I Cor. 10: 13 that He is faithful and will not test me beyond what I am able.  I know that I will still have my moments of struggle, and that I will really need support of friends and family and prayers. There are many other things to consider in the upcoming months, but I hope to share my thoughts and keep you posted about what is going on here during that time.

Thanks for keeping me in your prayers!