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!

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!

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!   

                                                

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!

 

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.

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, 1213online.org 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

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"

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!