Tuesday, July 29, 2014

Signs of Progress

Last weekend, before the outbreak of the Withers strep epidemic, Katherine's foot got caught in a pothole crossing the street. We were walking from Skyline to the Graeter's on Ludlow (for National Ice Cream Day $1.44 cones). Let's just say Kath left a lot of her skin on the road and the street left a lot of asphalt in her leg in return. Her adrenaline had to have been pumping because she popped right back up and kept walking. By the time we got to Graeter's though she came to find me to say her knee did not feel good. I took one look at it and could not believe how calm she was. It looked awful!

We went to the bathroom to clean it off and then quickly realized we needed more than the Graeter's bathroom could offer us. So we left to head home (with no ice cream and no complaining from Kath = a sure sign it was not feeling good). We cleaned it multiple ways and times, but it still looked downright nasty. Since I had to take Margaret to the doctor last Monday for a strep test, I took Katherine along as well to have her wound checked out. 

The doctor cleaned it and gave us an antibiotic cream. She said the asphalt would come out over time and new skin was already starting to form. Now just over a week later there has been so much progress I am jealous!! It is about a third of the size of the original wound and lots of signs of new skin coming in. She will never be a knee model (not that that was in her cards anyway), but she can tell it is getting better.

The signs of progress with me are less noticeable. I am not always the first to bed and last one awake - which I count as progress. I made Katherine run with me on Sunday and we did a whooping mile but it felt pretty good. However, my counts are still not picking up which I feel like is the story of my saga with chemo and recovery....and my counts are the "official" sign of how I am doing. 

My hemoglobin and platelets are respectable and hanging. My white blood count and neutrophils (ANC) plummeted this week. My ANC was less than half of last week today which was really disappointing. Despite how bad they are my doctor did okay relocating my recovery next week to the beach (but I cannot get in the water with my counts where they are), and I have been loaded up on even more drugs to take with me. Hopefully a week of sun and rest with the family is what I need for my counts to show more signs of progress so I can get back to "normal" life!!

Thursday, July 24, 2014

We are on the mend and the bills are rolling in...

Thanks to antibiotics, all of us at chez Withers are on the mend and hopefully have eradicated strep from our house. We all have new toothbrushes and we have done a lot of cleaning -  so we are doing our part to help P&G categories get off to a good start to the new fiscal year!

I have perked back up post strep and am feeling pretty good. Someone asked me how exercising is going the other day. I have been walking with a good friend in the neighborhood once a week and that has been great. I tried a short run (which in the end was a run/walk followed by a quick shower and then a nap)  with my long time running buddy last week. The run did not make me feel as out of shape as I thought it would (because I am very out of shape) but I felt pretty weak. Otherwise I walk the dog so really not exercising a lot yet.  A lot of days I horde my energy for other activities, but am hoping to start to be more consistent next week.

The medical bills have been rolling in lately which is always fun. Included in this stack is my insurance statement for last month. My medical costs billed last month were over $100,000 (what insurance paid was significantly lower thanks to their negotiated discounts). I am waiting to see what my prize is for breaking the $100k mark in one month. So far the only bonus is I have met my personal deductible and maximum out of pocket this year (and, yes, I think I have finally figured out how all that works). If there was anything else I needed to get done this would be the year but after months of being a regular at my oncology office I am ready to take a break from doctors, hospitals and the like for awhile.

Prescription drug price structures are just as perplexing to me as those for doctor/hospital. I was at the UC pharmacy picking up some prescription refills today. We are all about convenience in our family, and minimizing trips to stores, so we usually fill scripts at our friendly neighborhood Kroger pharmacy.  I've had to make an exception though on 2 drug with insane co-pays at Kroger. For one med the co-pay is $60 for a month's supply and for the other the co-pay  is $70 for a month. At the UC pharmacy (which is the least convenient, most pain in the neck place to go) these drugs total cost was $36 and the copay was $18. Yes, you read that right, same drugs available at pharmacies 2 miles apart and the cost to me at one was $130 and the other $18. The tip for the day is if you have less than mainstream drugs get them from the hospital pharmacy!! I am not sure if it is supply and demand, or subsidizes, or both, but the difference has been huge.

So overall we are doing well and staying the course. My next set of labs will be on Tuesday and hopefully will be able to say everything is trending up.




Tuesday, July 22, 2014

Dodged a bullet...well, almost

Last Monday after my doctor's appointment, our sitter took Margaret to voice lessons but since Katherine was sick she was hanging at home with me. She said her throat hurt and one look it and knew it was strep. It was nasty. I was able to get her into the doctor that day and sure enough the strep test came back positive and she started on antibiotics.

We thought we had done well "containing" the strep when we made it to Saturday and no one else had gotten sick. Then Sunday afternoon, while Margaret was snuggled up on the sofa with her cousin who had flown in town Friday from Boston for 2 weeks at Camp Kern starting Sunday evening, she announced her throat hurt and she did not feel good. Sure enough she had a fever....her throat did not look bad, just a little red but called first thing Monday to take her in as well.

My doctor's appointment yesterday went well. Nothing is normal yet, but everything is same (hemoglobin, platelets) or better (WBC, neutrophils). They were all saying at my doctor's office I definitely "dodged a bullet" by not getting strep. Since after my appointment I was picking up Marg to take her for a strep test they gave me a prescription just in case I got it. Unfortunately the old, "if your prepared it won't happen" did not work this time.

Margaret was positive for strep and by the time I went to bed last night I had a low grade fever and very sore throat. So started on the antibiotics and so far my temp has stayed below the "proceed directly to the hospital threshold". Now Margaret and I are quarantined. Our sitter and Katherine are trying to stay out of the house. Chad is going to get a strep test today at lunch to just make sure he does not have it too.

Katherine is definitely patient zero - who acquired it with about a quarter of the swim team. We are just hoping no one else gets sick from us (especially the girls cousin from Boston at sleep away camp in Cincinnati!!) and we are all on the mend soon!

Monday, July 14, 2014

Light up the Night

A few appointments ago when I walked into the infusion room the nurses were almost giddy with excitement. They were excited to have finally gotten UC's approval and support to do the Leukemia and Lymphoma Society's (LLS) Light up the Night walk and hang signs. They were carrying the signs around looking to find the perfect place for them.

When I started asking them about it they talked about the fundraisers they had planned and how they had worked to petition UC to be able to get them to approve the hanging of signs and their participation. These kind individuals that spend their work hours taking care of people like me with leukemia were so excited about spending their time outside of work volunteering to raise money for leukemia and lymphoma research.... how could I not sign up to help them!

Most of you know I ran the Cincinnati Half Marathon with the LLS's Team in Training program and many of you supported me with donations. I think my mother has been living in fear that I would try and run another half marathon with them this fall but I know that would be too much stress on my body. The Light the Night is about a 2 mile walk in October. Below is the link to my Light the Night fundraising page. Thanks again to everyone who supported my last run and hope that you will consider supporting me again this year.

http://pages.lightthenight.org/soh/Cinci14/BWithers*

In terms of my counts, it was not the big turn the corner day I had hoped for today. Everything was down vs up (hemoglobin and neutrophils down slightly but big drop in platelets). I am at Day 29 out from chemo so the good news is I have managed to avoid infections. Katherine has had a fever of 102+ since Saturday am so have been washing my hands a lot and we are keeping as much of a safe distance as we can. So for now we stay the course, and watch and wait....

Saturday, July 12, 2014

What do I do all day?

I have been thinking about this lately, wondering how I got so much done during a "normal"day pre the start of treatments. Sleep definitely is taking up much more of my 24 hours than normal. I am the first to bed and the last to get up in our house. Then by afternoon I usually need to rest but if I have had an active morning the rest can turn to sleep.

I am back to doing laundry and other basic household tasks but I do wonder where my time is going because I am not "doing" a lot and people who see me in the morning know I am rocking the just rolled out of bed look The thought of exercising, getting ready and out the door by 8 seems daunting!

We had a nice week with grandparents in town this last week. They were a big help and rolled with the girls moods and our dynamic schedule. I am trying to do more "normal" activities and get out a bit more. The nurse practitioner at my doctor's office and I agreed getting out a bit more was an important part of the recovery process even if it means being exposed to a few more germs. I am being selective, and smart about it, and these outings are helping me gauge where I am on building back my stamina.

Monday I am back at the doctor for lab work. Already got the word this week though that I need to stay on the meds until my white blood cell counts recover so just in watch and wait mode.

Monday, July 7, 2014

Candor

My stack of books to read these days has a generous selection of Young Adult Lit. The girls are both voracious readers and they like to recommend books, and I like to know what they are reading. So Divergent and the rest of that trilogy ended up in my stack. If you have read Divergent, or seen the movie you know about the Candor faction. This is where I feel like I have been living these days. Where my children believe in the sharing the unvarnished truth all the time.

My first candor moment came when I was in the hospital. I read Divergent during outpatient treatments and then moved on to some other books. While I was in the hospital and the girls were visiting I asked Kath if the next time they came she could bring the next book in the triology. Her reply was she was "not comfortable with me having the book in the hospital with all the liquids around". My moveable hospital bed table always had a pitcher and cup of  ice water on it...and Kath knows I am the one in our family that the saying "if it can spill it will" applies to the most. Okay, I could deal with that truth and just waited until I got home for the next 2 books.

Here are a few recent conversations in our house...

Background = my first night home from the hospital we are all piling on the sofa to watch a show together.
Me: I am so glad to be home from the hospital. I hope I don't have to go back soon.
Marg: But you will.
Me: Why do you say that?
Kath (in the all knowing tone of a pre-teen): Because you have cancer, Mom.
Me: Yeah, that...well I am hoping I don't have to go back for awhile.

Background = me actually getting dressed in something besides yoga pants and a t-shirt and putting on a little make-up.
Kath: Why are you putting on make-up?
Me: I feel better with a little make-up on and I like the way it looks.
Kath: I am not sure why you bother, it doesn't make a difference.

Background = snuggling with Margaret when she grabbed my calf muscle...
Marg: What is this?
Me: My calf muscle.
Marg: Mom, this is flab!
Me: (as she begins searching for the muscle I begin laughing hysterically) Yes, my muscles are out of shape I need to exercise more soon!!

I'm not sure if you have to have parental privileges to be privy to  completely candid, uncensored opinions from our children all the time but if you want thoughts on something and want to try it out you are welcome to stop by!

Unfortunately this same straight forward understanding of where I stand medically is not so easy to come by. My labs are mixed. My hemoglobin is looking good and has been inching up and is now at 10.9. My platelets are just under normal at about 130 and are bouncing around, but in a pretty good range. My white blood cells stink. My neutrophils dropped from about 750 Thursday to 450. So one more week of meds then we agreed that next Monday I will be close to Day 30 post chemo (Day 1 is the day you start infusions) and should be back to being just regular neutropenic like I have been for most of the last 6 months worst case, but hopefully they begin to build back up.

I am still feeling good more often then not. I have bursts where I feel so good I do "normal" things then my body slaps me down to remind me that I am not normal and I sleep like the dead all afternoon, but all in all recovery is moving along....

Tuesday, July 1, 2014

Health Assessments

Our company encourages everyone to do an annual online health assessment. It only takes about 15 minutes and covers questions on medical history, eating and exercise habits, and biometric data. There is a small financial incentive to complete the assessment and it is to raise awareness of the choices you can control to improve your health. Since I've had some time did it a few weeks ago. My results were surprising...

Turns out I am "healthier" than a year ago and in the 98-99th percentile of healthy individuals. There was a question of do you have cancer and I said yes. There was also one about whether you are currently getting treatment to which I also said yes. I have been eating very healthy and have lost a few pounds since last year (thanks, chemo) which ironically seemed to trump active cancer treatment!

So while I am dubious of that assessment's results, my lab work yesterday shows I am still holding stronger than we thought I would be at this stage of the game. Nothing is normal but my hemoglobin and platelets are flat. My neutrophils were down but still not awful for me. Hoping this is my low point and I start to pick up this week! I'm going to be on a twice a week Mon/Fri schedule for doctors visits for the next few weeks.

I'm having good days and bad days but the good days are feeling better and better which is making me cautiously optimistic.