Thursday, November 29, 2012

How are you feeling?

This is the first question my doctor asks me every time he sees me. I know he is really looking to see if there are any new infections, or symptoms, that need to be treated. Since I've left the hospital I have felt pretty good (except for this past Sunday with Margaret's virus),  I am just still very tired. My sleep habits have evolved to those of about a 3 year old with an afternoon rest (which is occasionally a nap) and an early bedtime (and evening is when I feel most so-so and get crabby).

I know I look tired, too, thanks to the honesty we have instilled in our children. This past weekend the girls were painting. Katherine decided she wanted a live model to sketch so she asked if she could do my portrait. My hair was up. She asked if I could put it down which was fine. I pulled it down, she fluffed it up and then dove into sketching. When she got to my eyes she started asking me questions for my input and the conversation went something like this.

Kath: "Do you want eyebrows?"
Me: "Yes, eyebrows would be great."
Kath: "Do you want the bags under your eyes?"
Me: "No, you can leave those out....and leave out the wrinkles too."

We all started laughing and I told Kath and Marg to always leave out the bags under the eyes and the wrinkles!!

I am very dubious though about "how I am feeling" being a good indicator of how I am really doing. When I was first diagnosed I felt tired, but otherwise fine, too, and am back to that point.

Mom and Dad, you should stop reading this post now.

I asked my doctor last week how close I was to dying when I was diagnosed with leukemia. Knowing 90% of my bone marrow was cancerous when I was diagnosed, and that my bone marrow was packed solid so there was no "marrow" to make new cells, and what the life of red and white blood cells and platelets realized I was not long for this world. My doctor very deftly responded by saying he was not going to answer it directly. What he did say was that my hemoglobin was 6 when I was diagnosed. The mortality rate at 2 is 80-90%. Most people by 4 know something is wrong. I was loosing about 0.5 of hemoglobin a day so not all that long.... craziness. I definitely have a new appreciation for every day and everything in my life!

So even though I am not sure it has any bearing on how my body is really doing, mostly I am feeling a bit stronger each day. I still have a long way to go to rebuild my strength, as my short walks or mini weightlifting sessions remind me, but I am moving in the right direction. People that see me say I look normal (and except for my children they kindly don't comment on the bags under my eyes!), and people I talk to say I sound normal. I am really looking forward to the day when my blood comes back normal, but until then will just try and savor each day.

Monday, November 26, 2012

The highs and lows of our "Stay-cation"

In China, the school year is set up wonderfully for great vacations. There is a week off in October for Mid-Autumn Festival (office is also closed). There are two weeks off around Christmas and two weeks off in Jan/Feb for Chinese New Year (office is also closed for about a week). Then there is a week off for spring break usually the first week in April. We knew we would not be living in Asia forever, and we totally wanted to take advantage of our location, so we travelled on all of these holidays (and truth be told for most long weekends too). It got to the point that if it had been 6 weeks and we had not been anywhere Katherine would come to me and say, "Mom, we need to get out of town. When is our next trip?" We all loved to travel and have new experiences so it was a fantastic schedule for us.

So five days, at home, with just our family has pretty much never happened. We have really never done a stay-cation and if we have stayed in town we have had a house full of guests. Given the girls and I moved back in June, and Chad did not arrive until Sept full time, and then my month in the hospital, we were all ready for some serious hanging out. We played lots of games. (Quirkle was the highlight of the weekend. I'd highly recommend this game. Fun for all ages.) We did lots of puzzles. The one we enjoyed the most was one of a photo of my entire family (~20 of us) in a park in the DC area this past summer. It was so much fun to look for cousins, grandparent and Auntie and Uncles faces and clothes. It brought back good memories.

We loved watching the Macy's Thanksgiving Day parade. The one question the girls had that we could not answer was how they chose which singers went on which floats because some did not seem all that well matched up.

We also ate well. Thanksgiving dinner had something for everyone. The rolls had not come with the dinner like we thought so I made my mom's which made the house smell like the holidays. We did have mac-n-cheese so Margaret was happy and she also discovered she likes turkey. Chad and I actually cooked a few meals too and remembered why we liked cooking.

The other "high" of the week was being outside and raking leaves. The girls asked if they could rake leaves and jump in them. Chad also got the leaf blower out. Margaret liked wielding it which was quite a sight since the leaf blower is about as long as she is tall. Chad also treated the girls to rides around our yard in the wheelbarrow which Katherine in particular enjoyed doing with our dog, Lilly, nestled in the wheelbarrow with her. So after one day of raking (which at 8 and almost 10 years old the girls are actually pretty good at both raking and picking up leaves) they begged the next day to do it again. Now we know this will not last. The first day we were back in our house in Cincinnati they fought over who got to clean the toilets. There is definitely a bit of novelty to it that will no doubt wear off but we are going to go with it while we can!!

As for lows, it was definitely Margaret getting sick on Wed with a fever and bad cough. I wore a mask in our house (total chafe) and tried to avoid her, but still got some of what she had (luckily no fever). I spent most of yesterday in bed but am feeling better today. The only other low was a bit too much sibling togetherness which culminated in Margaret stiff arming Katherine and taking her out as they both ran to tell me dinner was ready last night, and other squabbling that followed. We had a great time home but it was good that school started again today!

I went back to the doctor today for my weekly lab work. I am definitely feeling a lot more like the tortoise than the hare, but hopefully like the tortoise I will "win" the race. My platelets were up and are continuing to make slow but steady progress, my hemoglobin and white cells were just up slightly. My white blood cells and neutrophils are what we are really waiting on for me not to be such a high risk for infection. I am still home bound and hoping in the next couple weeks they are up enough that my medication will be adjusted so I can drive (at least to my doctor's appointments). I am finally back up to where I was two weeks ago on white blood cells and neutrophils.. but a long way to go to normal. Below is a chart with my numbers.

 PlateletsHemoglobinWhite Blood CellsNeutrophils
Normal Range 140-40011.7-15.53.8-10.81500-7800
At Diagnosis (10/10/12)116.12.7100
When I left the hospital (11/12/12)3110.51.1668
Last Monday (11/19/12)6610.80.9510
Today (11/26/12)9211.21.1660

The good news is with my hemoglobin stable, even though it is on the low side of normal, I was declared "no longer transfusion dependent" today and they pulled my PICC line. I think my children will be sad to see that I no longer have the PICC line. They had taken on the responsibility of flushing my lines each night. They wash their hands, put on gloves, clean the PICC with alcohol (luckily I have 2 lines so Katherine got the red one and Margaret the purple one), and then screw on the saline syringe and push the saline into the line. We'll see how they take the news of one less responsibility goes over tonight. Unlike feeding the dog or putting their clean clothes away this is one they needed no second reminders to jump to!!

Hope everyone else who celebrated Thanksgiving last week had a good holiday whether you traveled or stayed at home. We are hoping for a healthy first week back at school and work!

Wednesday, November 21, 2012

Thanksgiving Dinner

Growing up my mom always got up very early on Thanksgiving to get the turkey in the oven and to start the dough for her homemade rolls. We always had pretty much the same food every year on Thanksgiving, and many of the dishes we only had on Thanksgiving and Christmas.

My mom's rolls were my favorites. I have never decided if I liked them better hot out of the oven with butter, or the next with turkey, stuffing and a little bit of mayonnaise. My mom also always let us choose what kind of potatoes we wanted. With five opinionated daughters this usually resulted in 3 kinds of potatoes each year- mashed, au gratin and twice baked potatoes. I still remember how the house smelled and how my parents would set up a card table over by the kitchen bar to set food on to serve because there was so much.

For the past few years in China we celebrated Thanksgiving on the Saturday after with a big potluck at friend's apartments (since everyone had to work on Thursday and Friday). Our friends did the turkeys and everyone else signed up to bring other thanksgiving favorites. It was always very fun. The children ran around and had a great time, the adults got to hang out, and we all got to have a huge thanksgiving meal without cooking all day.

We have ordered our Thanksgiving from Whole Foods which will be great but am realizing there is nothing Chad or I am cooking that is a family tradition on Thanksgiving. Is it bad if Whole Foods becomes our family tradition?  I make a mean pumpkin pie and that is one of Katherine's favorites but no homemade stuffing or rolls this year. I realize our children don't associate any of our cooking with Thanksgiving. I asked Margaret if there was anything special she wanted to eat on Thanksgiving and her reply was, "mac n cheese would be good, out of the box please."....sigh, so sad for her foodie mom to hear.

We also realized our children have never seen the Macy's Thanksgiving Day parade. They have also not really experienced American football or football appetizers. So we are going to work on American culture immersion over the next few days and see what Withers family Thanksgiving Day traditions may take hold.

Hopefully the good weather will continue and we can go for walks. Chad took me for my first walk around the block yesterday. I made it but my legs were shaky by the time we got around and were headed back home. Don't laugh, but the nurses encouraged me to walk up and down the driveway. So for our neighbors, if you see me out doing this I have not gone totally insane from having to stay home but am just working on building up to walking the block on my own!

Hope all of our friends and family that celebrate American Thanksgiving have a great holiday!!

Tuesday, November 20, 2012

Feeling thankful...

With American Thanksgiving later this week, I have been thinking about all I am thankful for. I am very thankful to be home with my family. I am thankful for the beautiful weather we are having that has made it easier for me to get outside and talk short walks. I am most of all thankful for all the many people in our lives - our family, friends and co-workers.

I am also thankful for what so many people in my life are doing to help make some good come out of me getting leukemia. Thank you to those of you supporting leukemia research through donations to the Leukemia and Lymphoma Society, or for participating in walks or runs to raise money for research to find cures for leukemia and lymphoma.

Thank you also, again, to all of you who are blood and platelet donors. A special thank you to my department at work for organizing a special blood drive Dec 3 (thank you, Judy and Don, for leading this effort)!! Thank you also to Chad's department, and so many others, that are supporting and joining this event. It makes so proud to think that not only will the blood and platelet transfusions I have needed be replaced, but hopefully the blood bank stores will be added to by this event to help others.... and hopefully a few people see how easy it is to donate and you become regular donors.

I was very touched too that it is not just a blood drive but one that incorporates touches of my interests (i.e., areas for arts & crafts, food, talking and education on leukemia). I had only been working in this job for about 4 months when I had to abruptly leave for chemo, but clearly people were already getting to know me well before I left :).

P&G is celebrating its 175th anniversary this year. It has always prided itself on being a company whose strength comes in a large part from its people. We really feel like the last couple months have shown P&G people at their best. Chad and I could not have asked for any more support than we have gotten as we were tossed into life with cancer. Thank you all so very much for everything!!

Monday, November 19, 2012

Sensitive Reactions

About 10 years ago, while Chad and I were living in Geneva my sister, Molly, and her husband, Tom, came to visit us. Since we had visitors so frequently, we encouraged them to go some place we had not been one of the weekends they were in Europe so we could see more while traveling with them. Molly and Tom hung out with us in Geneva one weekend and then went to Paris and did other touring and then we met up with them in Normandy, France. It had been on our list for awhile but we had never made it there.

We all wanted to go see the D-Day beaches. So one overcast afternoon we started at the visitor center and then made our way to the beaches and then the cemetery. It was both somber, but beautiful at the same time with the cemetery right there overlooking the beach. We had pretty much finished looking around and were starting to find our way out when we passed a couple about our age walking the other direction. I don't think we would have looked twice at them if the man had not being wearing a new Lake Placid baseball hat and sunglasses. It was way too cloudy to need sunglasses, but what caught our attention was someone around 30 wearing a new Lake Placid hat in Normandy. We had grown up going to the Lake Placid area where my dad's family has cabins. There is definitely an age minimum on those hats, and this guy was no where near it.

We did a double take and realized it was Matt Damon and his girlfriend. Much to our both of our husband's extreme embarassment, we turned right around and starting going where they were going. Matt was telling his girlfriend all about the filming of "Saving Private Ryan". We could not believe he sounded just like he did in movies. We did our best to get a photo of them casually behind us. Unfortunately nothing came out of this except for us catching the attention of his security guards who shooed us away.

I was pretty pregnant with Katherine at the time and needed to use the bathroom as we were leaving. The bathrooms by the parking lot were locked and Matt Damon's security detail was not letting us back in to use the other ones, so we decided to hop in the car and find one on the road. All excited from our celebrity siting we raced off.

While the French countryside is beautiful and has much to offer, it was very sparse in the way of restrooms. After awhile we decided to find a good, discrete bush. I'd been a Girl Scout and done my share of camping. Chad pulled over. I did what I needed to and feeling much better got back in the car.  After about 15-20 minutes though I started itching. Then I realized there was a rash coming up my  backside around my belly. I did not think I had touched anything when I relieved myself but clearly was having an allergic reaction.

It got harder for me to breathe, Chad drove faster, Tom watched for signs for hospitals and Molly tried to keep me calm and from itching my skin off of myself. Luckily we found a small hospital in the next town. We pulled right up, we were the only ones there and they saw me right away. Luckily my French was decent at the time, but I remember not having all the vocabulary I needed and explaining in my broken French that there was no bathroom so I had to use a little tree (could not remember the word for bush)... The doctor luckily figured out what I was saying, got me meds that were okay for pregnant ladies and we were off again. We were starving at this point and discovered a great restaurant and cool church in a little town.

I cannot relate the Matt Damon story back to anything except that maybe I have a history of being inappropriately, light hearted even when I am in places that would lead most people to be sad and serious. The Matt Damon sighting though is forever linked in my mind with the peeing behind a bush while pregnant and ending up in a small French hospital because of my allergic reaction.

I am clearly rusting on blogging from being home and lured into all there is to do here at home... so what is your point you say? I have a history of having weird allergic, and sensitive, reactions. I had an allergic reaction to a spider bite this Sept which is very uncommon, and I had multiple allergic reactions to medications in the hospital, "to all the good drugs" in the words of a fellow chemo patient. My prolonged count recovery also falls into the sensitive reaction camp.

As Chad said, the specialist on Friday was very reassuring. He said the chemo drug I had is the standard treatment. It is also very toxic. He was not surprised it was taking longer for my counts to recover. He has been researching and treating patients with Hairy Cell Leukemia (HCL) for several decades. I asked if he tended to see longer count recovery in women. He said he had never looked at that or thought about that (which surprised me). Given this is a rare disease where the base size of the studies is small 10-30 people, and the disease is so skewed to men would make sense to me that most of the research has been on men. Some of my issues, or complications, in the hospital are only seen in younger (having hit the 40 mark will give up young but will still cling to younger) women. Clearly the chemo drug is having a stronger than normal impact of me given my prolonged count recovery times. Fingers crossed in this case the strong reaction is against both my healthy and cancer cells. I'd gladly trade off a longer recovery time for a complete and long remission!

One downer with the specialist was he said with this treatment if I was lucky I would have 10 years before it came back. I smiled and said at 40 was hoping for more than 10 years. (Then my husband so kindly pointed out that doesn't even get me to retirement age of 55.) Hopefully this treatment buys more time for research and new drugs which it sounds like there are a few of in the works. HCL is highly treatable but not curable. So at some point I will need another round of chemo. The doctor Friday was very helpful walking through options, how frequently he would recommend doing blood work on a going basis and all of our questions along those lines.

We ended last week feeling positive and being reassured about where we are and my prognosis for recovering at some point. I was back at my doctor today for my weekly lab work and unfortunately not much progress on the counts. My platelets are up a little, and my red and white blood cells are flat. Next Monday if my reds are flat to up then this will mean I am no longer transfusion dependent, and I will get my PICC line (my central line) pulled which is a big milestone but then just need to hang at home until my white blood cells come up from the dangerously low territory.

So for now, am still trying to rest, recover and enjoy being home.

Oh, and I almost forgot, the question I know you all have... were there new word games in the lobby today? I was quite impressed that there was a new crossword puzzle but no new word search or scramble. Thanks for the help on the words from last week.

Friday, November 16, 2012

Visiting the Oracle

So - although I will later try and pull together some kind of post to share some stories about the last month from my perspective, I know that everyone is probably most interested now in knowing the outcome of our visit today to "The Oracle" in Columbus.  The Oracle is a specialist in hairy cell leukemia, who has been working on it for his entire career and is one of the most widely published authorities in the field.  While we've been very happy with our doctor here, we got some good advice to seek a second opinion after the first round of treatment.  (Although the first round of treatment for hairy cell is pretty consistent across different doctors, the choices widen in the event that you don't get a satisfactory remission, and we wanted to start understanding those alternatives ahead of time so that we had time to consider our options if that becomes necessary.)

Short outcomes today - we liked the doctor and staff at OSU a lot and they clearly were experts at this.  They were very reassuring on a few points - a) our current treatment plan was solid and they didn't have anything that seemed amiss (good news since we've been really happy with our current doctor, and having a different opinion would have been demoralizing); b) Beth's comparatively low count recoveries were not at all surprising given the state of her disease when we started treatment and the impact that cladribine has on your healthy marrow - it's very effective, but not easy stuff on any part of your body; and c) at this point there really wasn't any reason to think that Beth would not be in the 80-90% of people who see a complete remission after the initial course of treatment.  (We had been nervous about the level of hairy cells still present in our last biopsy, but he reassured us that there really wasn't anything there which would tell us one way or another about how things would look in January/February, and cautioned against doing too much too fast, given the downsides of chemo and potential for even more prolonged pancytopenia (low counts) with more rounds of treatment.)

Net a very good day, but very tiring for Beth - although it wasn't a ton of walking, it was much more than she was used to, and it was a pretty full day - leaving with the girls for school and returning at 4:30.  It was nice for us to have the drive up to Columbus together to chat, since we've not had a date in a while and are likely a couple of months away from going out to eat together!

I will try to post again later in the weekend with some other stories and tidbits from the past month - the girls have been awesome but this whole constant motion thing is a bit draining and I've not felt up to much in the way of posting - but wanted to get this out there for those who were wondering....

We are grateful as always for the love and support so many people are sending Beth's way.

Life as an Outpatient

So I walked out our front door yesterday with our nanny extraordinaire, Andrea, who was dropping me off at my appointment, and paused and thought wait something is not right. It took me a minute, but then I realized I was wearing the slippers that have been my "shoes" the last 5 weeks and thought, nope need real shoes today. Went back inside, made the quick change then was off.

Realize these appointments are going to be more like epic saga visits. It was 3 hours yesterday and I did not need any transfusions or IV meds. I just had blood drawn, my PICC line changed and saw the doctor. While I was waiting to get blood drawn realized that UC has in the waiting area its own crossword puzzle, word search and word scramble (never a good sign). All were clearly done by someone on the staff... wondered who got this job... and am sure I will learn how often they are updated. The crossword puzzle theme was vehicles and it was pretty easy. Hovercraft was the only one that gave me a bit of trouble. The word search theme was Hip Hop. It was not too bad. I was hampered a bit by not being that in touch with Hip Hop artists. Somehow I had never heard of Spoonie Gee, The Pharcyde, and many others... will blame it on living in China the last 4 years.

Now when I got to the word scramble I was downright stumped on many. I was worried it was cancer-chemo brain. Then Chad arrived and he could not get them either and I was greatly relieved. The ones that were easy were all food related. I thought that was the theme until I got "douglas fir" then realized there was no theme which made it harder. Below are the ones that stumped us. See if you can help us out (no I have not forgotten any letters or added any extra have triple checked that I copied them exactly).

rooneg sentouns

As for the appointment, my doctor answered all of our many questions. Unfortunately my blood work was not as good as we all had hoped. My platelets were up from about 30 to 50 which is good but still moving slower than expected. My hemoglobin (reds) was 11 up slightly from 10.5. I am still in the window that this could just be transfusion related so we need to wait until the blood draw the Monday after Thanksgiving to see if my body is making enough red cells or not. If so, I will get my PICC line pulled. The real disappointment of the day was the white blood cells at 0.9 (down from 1.1) and the neutrophils down to 440 from 668. So I am home bound and need to done a mask when I go out to the doctor since my body has less ability to fight bacteria than it did beginning of the week (and am on Oral versus IV meds that are not as strong). Monday I go back in for more bloodwork and may need some shots or different meds if my whites and neutrophils have not improved.

It will be early January before the definitive re-tests are done to know if we have a round 2 of chemo and when that will start. Chad and I are making the trek to the specialist in Columbus today to get his opinion on testing and re-treatment plan. We are also hoping to get some insight from him on why my counts have been suppressed for so long post chemo. My doctor here and his team have wrestled with this question and, sounds like, combed over the research and I am a bit of a medical mystery right now. Will see if we get some answers today....

Still feeling much better to be home than in the hospital. My doctor agrees hospitals are not good places and wants to keep me home if possible, which we are very glad to be aligned on!

Thursday, November 15, 2012

On Being Home

I know this is stating the obvious, but home is WAY better than the hospital. Every day I am home I feel better and better.

Queta was right there was a big "Welcome Home, Mommy!" sign on the front door the girls had made for me when I arrived home Monday afternoon. We got home with just enough time for a quick nap before the girls got home from school. They changed their clothes and washed their hands and then jumped in bed with me. The first 24 hours home were idyllic. Margaret's birthday was Sunday and she said the best birthday present was me coming home. Katherine hardly left my side the first night I was home. She laid in bed and chatted with me. Then she hopped up, grabbed her homework and lap desk, and settled back in next to me and got to work. We had dinner in the family room in front of the TV (big deal in our virtually one TV house), and as we watched she snuggled and had her head on my shoulder. By Tuesday night some sisterly bickering came out and Wed morning there was a huge cat fight over quickly things returned to normal.

I feel like a third child to be taken care of these days at home as I still work on building up my strength to do simple things like walk up and down the stairs. I am trying to help Chad with what I can at night like opening the mail and helping the girls with homework but he is definitely doing the lion share of the work around the house.

The meds I was switched to before going home are definitely much easier on my system. I have traded nausea for dizziness and a bit of blurred vision. It is not great but I at least feel better. I just have to be extremely careful I don't fall since I still have a very low platelet count.

We are all looking forward to a quiet Thanksgiving week at home, although there have been tears from more than one of us about the fact that we were suppose to be flying out to Dominican Republic Sunday for a week lounging on the beach...

I go to the doctor this afternoon and am curious to see what my blood work shows. I know I feel better, I just want to see if I am clinically getting any better. It could be I am just able to sleep more at home, the food is better and I am definitely moving around more and feel like I am little by little building back my strength. I could feel better and still have totally crappy counts, but hoping there is a strong positive correlation between how I am feeling and my counts.

I also have another theory on what is helping me. In college, I volunteered at UVa hospital through most of school. For a couple semesters I was on the Newborn ICU. There they had volunteers scrub down and suit up and then hold the babies and rock them or hold their hands and rub their arms if they needed to be in incubators. They saw infants that were held and touched more improve faster.

In my hospital stay, when you are on isolation half the time and your immune system is so dangerously compromised as mine has been, and is, no one touches you unless they have to. At home, the girls are constantly touching me and at night I have Chad next to me. I feel like I am thriving and feeling so much better each day....We shall see what the numbers say.

Tomorrow we are also tentatively going to see a Hairy Cell Leukemia Specialist in Columbus. Fortunately for us there is one of the few hairy cell clinics and specialists in the country so close by. A good friend was able to get me an appointment with him for a second opinion on testing and next steps if we need another round of chemo. He is "out of network" from a health care standpoint. I just had someone from his office who does insurance call to make sure we understood what that means. We knew we had a new deductible and new out of pocket max, which is fine We did not know that unlike "in network providers" where once you meet your max insurance pays 100% of the contracted rate and the rest is "forgiven" or discounted. When someone is out of network you are responsible for the difference between the billed rate and the contracted rate which we have already seen is a staggering difference. So it is clear my treatment and any testing that needs to be done will continue to be at UC, but hopefully we can get some ideas from this doctor on next steps on treatment that will not be as hard on my body, or require such a long hospital stay.

Will let you know how this afternoon and tomorrow goes...

Monday, November 12, 2012

Going Home!!!

We just got the good news that I am officially going home today!! My neutrophils were up to 668 (vs target of 500 to leave) so after 29 days I am finally going to get some fresh air. My counts are still low so will need to be careful about getting an infection but am so excited to finally go home.

My trends are good enough I don't have to come back to the clinic until Thursday. He does think given how long my recovery has been so far that the up swing of my counts will likely continue slowly.

Likely will be wiped out by the trip home and will not have any more news until the Thursday visit so don't expect a post before late Thursday or Friday. Thank you again to everyone for all your support.

Sunday, November 11, 2012

Our new normal

When the girls were newborns it felt like just as soon as we would get in the routine of their nap schedule and feeding it would change. This was especially true for Katherine. She was about 10 days late and an emergency C-section. She was tangled in the cord, and the doctors thought she had lost over a pound that last week in my belly. Her skin kind of hung off her bones and she had a saggy little behind. As a result, she was a voracious eater. The first week she ate round the clock every hour. Then slowly she moved to every couple hours. She was never a long napper. She would take 45 minute power naps and would be up again so she was constantly forcing us to adapt to her new schedule. Just when we got in the groove she would drop a nap or a feeding and we would start all over on the routine.

This last six months has felt the same constant shifting of normalcy. We were all together for our last year in China which was great. We packed out in May and moved to temporary housing and got use to that. The girls and I, and our dog, Lilly, then flew back to the US early June. We got use to the constant move in deliveries and Chad still being in China. We also had the hurdles of the transition from summer vacation to starting a new school and braces which we cleared. Finally Chad arrived in mid Sept and we had to settle back into being a family of 4. He had been back less than 4 weeks, we had been commenting on how nice and "normal" our lives were when I was diagnosed with leukemia and admitted for treatment.

I have been in the hospital 28 days now. My resident rotates off this unit on Nov 15 and we have been joking we are racing to see who gets off first him or me (we are both hoping it will be me!). Our new normal is definitely Chad being a single parent and me being in the hospital. The girls and Chad are in the groove of the routine of school and life at home. I am use to the every few hours vital checks, the constant IV infusions and transfusions and my cozy little room.

We are still hopeful I can come home tomorrow and we will settle into yet another new normal, but it is not definite based on my counts today. My counts are up today and my white blood cells are 1.0, but my neutrophils are 320 (need 500 to go home). So we will see tomorrow if my doctor will let me out or if I will have a few extra bonus days.

The final pathology report is back on my bone marrow biopsy. The percent of hairy cells has dropped from 100% at diagnosis to 30% now. Given the drop is over 50% that means my body responded to the chemo. Obviously we would have liked to have a lower number than 30% of cancer cells still left. The doctors say the hairy cells may continue to die off and the number could drop at the 2-3 month biopsy but not a good sign for hitting complete remission in one round of chemo. Not excited about the thought of doing this again, but just looking forward to getting home now for at least a few weeks... we will see what my doctor says tomorrow and will keep you posted.

Saturday, November 10, 2012

Health Care Costs

In the US, health care reform has been a huge topic of debate for literally decades. Despite it being a "big" issue for years,  both employees and employers have been seeing dramatically rising health care costs year over year. We have been lucky enough not to have had really serious health issues that have mired us in the health care system so we were a bit sheltered from just how broken things are.

Living in China the last 4 years we have been a bit shielded from what has been going on here. With international insurance, we paid 25% of almost all costs (ex hospital stays which insurance covers more fully) and insurance paid the rest. We decided which doctor to see, in which country, and when we needed to go. Our doctors decided what tests and medicines were needed. We typically paid in cash and then got reimbursed. This plan worked well from our perspective. There was no "in system" versus "out of system" doctors and deductibles Since we paid up front then submitted insurance was not involved in treatment plans or medication.

We moved back onto US health insurance Sept 1. (We would not be surprised if I have blown the actuarial forecasts for costs this year, my experience is clearly unforecastable!) The insurance is so complicated Chad has had conversations with key people on the P&G Benefit Team and at the hospital.

The first bills have started to roll in and it is not hard to see how horribly broken the system is now that we are so immersed in it. The first bill to arrive was for my first night at Christ Hospital where I had blood and platelet transfusions. I shared a room, and did not see a doctor the whole time. Also, my nurse did not have her bachelor's degree.... she was a trained RN but was going to school to get her Bachelor's in Nursing. Point being I was not seeing "expensive" people, I was only there for about 14 hours and consumed a very small area of space. The bill came in for something like $12,800. Insurance paid about $2500 and the rest was "discounted".

So in our very warped health care system the hospitals charge exorbitant rates to patients with insurance to try and skim money to cover the cost of indigent clients. Then the insurance companies basically pay what they think is reasonable and they leave it at that. Both parties know this is how it works and it has persisted. It really bothers me as a Finance person to see such a broken pricing system!! I think even $2500 a night is crazy. We have stayed in extremely nice hotels around the world with much larger, more luxurious rooms, significantly better food and service for a fraction of that cost. If I had had to have any tests or seen doctors could see it being higher but this is crazy.

In my treatment, insurance has also played and active factor and we realize they are a behind the scenes part of the team. There are some medications they cover and some they only cover if you are outpatient, and some the team here has to put a defense together for to justify. One example is I get a shot once daily to stimulate the production of white blood cells. There is a long lasting version of this shot that you get once and it lasts for 14 days.  However, insurance does not cover it inpatient even though the long lasting version is cheaper if a patient needs it for more than 7 days (I've been on it for 3 weeks now) and better for patients (less shots).

As we talked about going home and moving from IV to oral meds insurance came up again as a key consideration. A special appeal had to be made because of my prolonged low white counts to get me the drug that is most effective in my situation, but is typically not covered by insurance.

I am a full believer in the need for checks and balances in systems, but am really uncomfortable in how this system works. I have not spoken to anyone at the insurance company. They do not join on rounds so am troubled by the clearly active role with decision rights that they play in the medications and testing I am receiving yet they are not as close to my case as my doctors and his team.

So the hospital bill reconciliations have started. The system is crazy and broken. I am still ready to get home as soon as possible. We are still targeting for Monday.  Unfortunately all my counts dropped today. I am getting 2 units of blood this afternoon. I am a bit nervous about it because it is the first transfusion I will have had since I had an allergic reaction on the last one so will likely get pre-medicated with Benadryl. I was also very surprised my counts were down because I felt really good last night, and yesterday everyone felt sure at least my white blood cells would continue to trend up.

My sister, Molly, is in town for the weekend and we had a sleepover last night which boosted my spirits, so that may be why I felt better. Molly is kind enough to be coming back for another hospital sister sleepover tonight. She thought the fold out chair bed was way more comfortable than camping out so not sure if this is a sign that my family tends to have a positive view on things or if we have all had broad experiences that truly include worse options, or both.

Sorry I have rambled on a bit today. Hoping my counts start to trend back up tomorrow and Monday so I can finally go home. 

Friday, November 9, 2012

My bone marrow is working!!

Good news ... my counts were up again today. My whites jumped to 0.8 and my red cells and platelets held. My neutrophils (which fight bacteria and need to be 500 before I go home) almost doubled over night from above 200 to over 400. So things are looking good for me to go home on Monday. This is deja vu and we have said before I should be going home on a Monday so tryinig not to get too excited. Also, am not feeling great. We think it is the mix of medications. They are going to change them up as I get ready to go home so hopefully I will feel better soon.

Will keep you posted but fingers crossed will finally get out of this place Monday!

Thursday, November 8, 2012

My Counts Today and Prelim Biospy Results

First, a little good news today was my white count was up to 0.6 and the big news was my neutrophils (which fight bacteria) were above 200. This is good news because my neutrophils had been hanging in the 20s. They need to be above 500 before I can go home and "full recovery" is greater than 1500. My red blood cell count and platelets were flat which was also good news.

The nurse just came to talk to me about the preliminary pathology results of the biopsy. There is some good news and some so-so/too early to tell info. In the biopsy they were looking at two things 1) the percent of cellularity, and 2) presence of hairy cells.

Here is what the nurse explained to me... In the bone marrow there is liquid and solid (cellularity). When the bone marrow biopsy was done when I was diagnosed, my celluarity was close to 100%. My marrow was packed with cancer cells. The normal level of cellularity is 50%. Based on my counts my doctor was expecting my cellularity in this biopsy to be 10%, but the prelim results are at 40%. So the chemo cleared out room in my marrow. The pathologist said my marrow was full of the pre-cursor, mama cells, that make the baby cells. The marrow fills up then overflows into the blood. Given my percent of cellularity is 40% the pathologist thought my counts would start to spike up very soon.

On the question of presence of hairy cells, they cannot tell from the prelim report how many hairy cells are still in my bone marrow. Apparently they die off over time and it can take up to 2 months for them to get fully wiped out post chemo. The pathologist thought at this point that at least half of my cells were "good" cells. She would not know for sure the percent of hairy cells until the staining is done and the final pathology report is in which could be end of day tomorrow, or more likely Monday.

Right now the plan is we wait for my counts to recover then I get to go home. I will then have to work on rebuilding my strength and fully recovering my counts. Then in another month I will have another bone marrow biopsy which will determine whether or not I need another round of chemo.

It is good to have some more information on what is going on and signs that my counts are close to recoverying, and at least a break from the hospital is in my near future, but sounds like it will be a bit before we know if the chemo fully worked.

Thanks to everyone for their continued support. Thanks especially to everyone at P&G. We totally appreciate how everyone has collapsed in around us so that I can focus on getting well and Chad has the flexibility to come be with me at the hospital and balance everything with the girls.

Art versus Science

I have always thought of medicine as a hard science. Watching my friends take organic chemistry, biology and the various other pre-med classes none looked easy, and they all seemed like there were right answers and wrong answers, very black and white. As I find myself on day 25 here in the hospital, I have really changed my viewpoint and have become more of the mind that medicine is as much art as science. There is a base plan but each individual's body is different and the combination of medicines they need is different and how their body reacts to them is different. My doctor is constantly fine tuning the medications I am being given, the doses, the timing depending on how I am doing.

Yesterday I woke up feeling miserable. The concoction of drugs they are giving me is making me very nauseous. I joked about the wheelchair ride to the ultrasound giving me motion sickness earlier in the week, but we do think there is something like that going on so today Dramamine, or a sea sickness patch are getting added to my list of drugs.

Given how crummy I was feeling yesterday, combined with the fact my counts were still pitifully low, we decided with the doctor to go ahead and do the bone marrow biopsy. They did it in my room yesterday morning and gave me good drugs so the procedure itself did not hurt nearly as much as the first time around. I was very sore and groggy the rest of the day. The first biopsy they did at the start of this journey was a "dry tap" there was literally no marrow to get out. Yesterday there was liquid coming out so we are hoping that is a good sign.

Still waiting for my daily labs to come back and the prelim pathology report on the biopsy. Both should have been back already. My nurse said she thought my labs were taking longer because when counts are really low they have to be double checked... excellent.  Sounds like my doctor will sit down with pathology this afternoon to go over the biopsy. Hopefully before end of day we will know more on what is going on.

I am sore today and not feeling great, but feeling better than yesterday. I will post later when we have any news on the biopsy. My doctor did say if it still showed leukemia he would let my counts recover, let me go home for a few weeks before we start this all over again.  Fingers crossed it at least shows no cancer (or minimal amounts)....more to come later.

Tuesday, November 6, 2012

Operation - Visit Mom

As of yesterday, I had not seen the girls in a week. They are not allowed in my room and since I was on isolation I was not allowed to go to the lounge to meet them. I made an impassioned plea to my doctor. Fortunately he consented to their visit if they girls put on gowns, masks and gloves...but we needed to be discreet (code for my doctor is new here and he and the nursing staff don't totally see eye to eye on things). So after he okay'ed the girls visiting so Operation Visit Mom was in full swing.

The girls came home from school and went right to work on homework. After dinner they put on clean clothes and scrubbed up for the visit. They both got dressed up in dresses. Margaret had on a long sleeve dress with tights, and Katherine opted for a cute yellow sundress (it is freezing here at 20 degrees Fahrenheit).

The girls are such troopers. They got their gear, crept into my room with Chad and then got all decked out by the door. They looked very cute in all their protective garb. Margaret then hopped right up in bed with me to go over plans for her birthday this weekend while Katherine decorated an extra mask with scented markers. Then they switched places. Unfortunately not long after that Margaret discovered all the buttons on the bed. I had to abandon ship when I got queasy. Then we had to put a stop to the bed button exploration and up and downs for fear of breaking the bed and blowing our cover!

It was really good for me to see them, and them to see me. We have another visit planned tomorrow night. I am off isolation so not sure if I will get all decked out and meet them in the lounge but greatly preferred having them come to my room and hop in bed next to me.

Today was a very busy day today. I finally got to leave the room this morning for some tests. By the time I got back I was not feeling so hot, a nurse and I were joking I had motion sickness from the wheelchair ride and my guy pushing me too fast. My mom arrived and then someone from physical therapy. At that same time I was officially taken off isolation so I got to go down the hall to the lounge with the bike and start to build back up my legs so I can have the energy for the trip home, and up the stairs into my house. Then had a few good friends visit so was pretty wiped out and slept all afternoon.

My counts are still terrible, but they are flat. Getting off isolation is a big win. I have to wear a mask if I go down the hall but leaving my room is really nice. I am on so many antibiotics, antivirals, etc that are IV every 6 hours I need to stay in the hospital until my counts start to recover. All these drugs make me feel less than terrific so more meds to manage that...Plan is still to do a bone marrow biopsy on Monday to see what is going on and then the doctors need to see some recovery before they can step me down off the IV drugs every 6 hours and have it be safe for me to go home. So I am not quite the boy in the bubble but pretty close....

Hope all our US friends voted today. So glad Chad and I early voted the day after I was diagnosed. Also, very glad election ads will be off air tomorrow! Ohio has been a miserable place to be without DVR and the ability to fast forward through the election commercials!!

Monday, November 5, 2012

Acts of Service

When I was 8 years old, my mom took my sisters and me to her parents in Tennessee for a week during summer vacation. My dad had to stay behind to work and he was also painting our house. We had not been at my grandparents long when we got the call that the heat had been very bad in Virginia and while my dad was up on the ladder painting the second floor he had gotten light headed and fallen (luckily landing on a bush that broke some of the impact), and had broken ribs and punctured a lung. We packed back up and headed home.

After we got home and had unpacked my mom went outside to clean up the carnage of my dad's fall. Awhile later my 8 year old self came outside and told my mom dinner was ready. I had set the table and had "made" chicken noodle soup and spaghettios (both from cans). My mom was a bit horrified I'd used the stove on my own for the first time, but she was touched by the gesture of what I had done.

A good friend gave me a book called The Five Love Languages to read which talks about five different ways people feel love. They are acts of service, words of affirmation, physical touch, quality time and gifts. My primary "love language" is acts of service. It is what I do to show love and makes me feel loved. Despite being trapped in the hospital for 3+ weeks I am feeling very loved from all that people around me are doing, and have offered to do, to help us. Thank you all so very much!

The plan, for now, is that I am the lucky recipient of a few more weeks at University Hospital. We checked this morning on whether they had a long term stay bonus points program, and sadly they do not. I think unfortunately all we will be receiving is long, confusing bills of all types for months to come, but medical care costs are for a post of their own.

Unless my counts make a miraculous recovery by end of this week, then next Monday they will redo the bone marrow biopsy to see what is going on in there. Then we should have a better timeline and potentially a revised game plan. They are checking my blood each day for leukemia cells and none are showing up which is good, just not much else yet either. Given the very high percent of cancer in my bone marrow (80-90%) they are saying that is what it is making it take awhile for my body to kick in and take over.

In the meantime, I am hanging in my room. I have not been able to leave my room for about a week now. It is really going to feel like of crazy when I finally do get to venture out. They want to do an abdominal ultrasound to check a few things out and that will be my big outing. Oh, how what you look forward to can change so quickly!

Sunday, November 4, 2012


I walk fast. I talk fast. I am decisive with a bias to action. I am many things but patient does not top my list of virtues. My counts are in this morning and my white blood cell count is just 0.3 again...sigh.... so that means likely more of the next week than not in the hospital. My body is indifferent to where I sleep because that is all it wants to do. My mind is screaming at my body to get with the program and ramp up that bone marrow production of healthy cells so we can get the heck out of here. 

I am feeling like it is a bit ironic that what the doctors are telling me that I need to do as a patient in this hospital  to get well is be patient and give my body time to replace the cancer cells with good cells. Today I am mentally resigned to being here another week plus, and I know in the grand scheme of things a bit more time in the hospital is worth it if it means full remission in the end. After three weeks in the hospital it has really become my new normal. I am having trouble remembering what it feels like to sleep in my own bed, or what the air outside will feel like when I leave the hospital (or my room for that matter). The weather has changed since I arrived so I know it is colder outside, and am sure our house is still drafty that that did not get magically fixed while we were in China. Chad and the girls will be in their groove too, just like the girls and I were this summer while Chad was still in China. We have proven we are an adaptable family so we will adjust but I know I need to be patient to get out of here then at home we will all have to be patient as well as we settle into the new routine of having me home.

Chad and the girls get back from Vegas today. They had a great time seeing the city, Hoover Dam, America's Got Talent and grandparents (O'momma and O'poppa). Their trip also included a stop at the world's largest gift shop where I hear Margaret acquired a whoopee cushion (thanks, O'poppa). Sounds like seeing the best of this season's America's Got Talent live was a total highlight of the trip. The girls thought all the acts were better live. They also had a street sighting of Turf and saw him perform. Watch for good photos on facebook from Chad.

Please keep me in your thoughts and prayers for patience and for my bone marrow to start working....Time for a nap.

Saturday, November 3, 2012

Proofreading (or lack thereof) and Blood Donation

I probably should not admit this, but I really do try and proofread my entries before I post. I will re-read and spellcheck. Occasionally, will go back and re-read one and invariably catch something. I have never been good at proofreading. Chad and I will send each other documents at work sometimes to read and edit for the other and he invariably asks me, "did you read this before you sent it to me?"....usually the answer is yes. I like to think my mind goes faster than I can type. I am going to claim the "cancer girl" excuse now too.

Mary Kay, feel bad I got your name wrong in an earlier post. I totally remember you and was a loyal reader of your GWIC Gazette columns. I so appreciate you not knowing me but giving blood and supporting me in this journey.

I have had a few people lately mention to me they have never given blood before but they are willing to try but don't know what to expect. The links on the blog have donation centers and the Hoxworth website (see the link for donating blood/platelets in Cincinnati) has a detailed questionnaire to see if you are eligible, and a step by step of the process. In general, the process is to complete a questionnaire to confirm you are eligible to donate blood, they check your vitals (e.g., blood pressure, temperature) and do a finger prick of blood to check the amount of red blood cells (oxygen) in your whole blood, and then they stick you with a need to get the blood (takes about 10 minutes). Then they have you wait 10-15 minutes and have a snack before you go. You can do a "whole blood" donation, or just red blood cells, or platelets. You can become a regular donor and if you do whole blood donations you can give every 8 weeks (and you get a snazzy Hoxworth card and get to skip the questionnaire steps). At most locations you can walk in and donate but they prefer if you make an appointment, and am sure this probably makes the process a bit speedier as well.

I am blood type A+. If you are also, then you can direct your donation to me, but really think anyone giving in general will help someone and is such a gift. I am literally getting platelet transfusions every 2-3 days and blood transfusions about every 4-5 days (2 units), and will be for awhile. A lot of people have been asking how they can help and really this is the biggest way.

Last night was terrible. My counts dropped in the nightly labs so I needed platelets and red blood cells. It took literally all night for me to get them so lots of in and out of my room and very frequent vital sign checks to make sure I am not having an allergic reaction to the blood products. This morning was the normal revolving door so slept away the afternoon. My blood work for the night came back and my white blood cell count is down again to 0.3, and still showing signs of infection. The doctor's today, I think, tried to prepare me that I could be here another week. If we reach day 28 and still no upward trend in my white cell count they will do another bone marrow biopsy to see what is going on in there.

Whenever the doctors leave the room they ask if there is anything I need. My response has consistently been white blood cells. Please keep my in your thoughts and prayers. I am on Day 20 in the hospital and am mentally and emotionally more than ready to be home.... just need my body to catch up.

Friday, November 2, 2012

Roller coaster rides

Growing up I always loved roller coasters. The place to go in Virginia was Kings Dominion. I loved the Rebel Yell (old wooden roller coaster), the Grizzly (bigger drops) and the King Cobra (took you upside down forward and backward).  When I was in eighth grade I flew to Los Angeles by myself to visit an elementary school friend who had moved out there. Her family took me to Disneyland and I loved Space Mountain. A few years later my family made the trip to Florida to go to Disneyworld.

Our trip was definitely like something out of National Lampoon's Family Vacation. Picture a wood paneled station wagon with lots of luggage strapped on top, parents in the front seat, 3 children in the middle seats and 2 children laying in the back (pre seatbelt laws) along with pillows, a box of games, the box of snacks and the too frequently needed barf bucket (generous sized bucket with a snap on lid). We'd hit rest stops and literally my sisters and I would roll out of the car. We did not drive directly from DC to Florida either, we went via all the southern relatives homes. So the big stops were my grandparents in Knoxville, Tennessee, and then my mom's cousin in Georgia (who had worked at Disney and hooked us up with free tickets). This is an aside, but after we did Disney we spent a couple days on the beach most of which my dad spent looking at vans that I think he wanted to buy before the return trip home.

I had great memories of Space Mountain in California and convinced my younger sister, Margaret, who was about 9 years old at the tim,e to go on this ride with me. We waited extra time to get in the first car. We were rewarded by being plunged into the darkness and whipped around for the ride. I came off loving it. Poor Margaret was white as a ghost and was scared to death by the end of it. She did not go on another roller coaster for about a decade. I could not believe she did not like it.

At P&G, I have always looked forward to Dividend Day at Kings Island. Pre-children Chad and I would go and ride the rides over and over. We had a bit of a hiatus from roller coasters with our time abroad followed by young children years. Turns out we have adrenaline junkies for kids and they love roller coasters, too. This September we started Dividend Day with two of the smaller rides in the little kids area. The girls quickly dismissed those rides and set their sights on the "real" roller coasters. We did a few and then they wanted do what I think is called the Slingshot. It is a ball that 2 people sit in that basically shoots you in the air like a slingshot up something like 250 ft then you bounce back, spin around and they lower you to the ground. We watched it half a dozen times. Katherine really wanted to go, Margaret really did not. Turned out Kath did not weigh enough to go by herself. Chad who has a well known fear of heights passed to me to go with her.

By the time it was our turn, Margaret had changed her mind and I gladly gave her my spot. I was feeling good about the trade until other parents turned to us as our children were being shot into the air and asked if those were our "only children". Then we both felt like we were going straight to the bottom of the list for parents of the year. They were shot up, bounced, spun around, but then they did not come down. We watched for a minute, and waited. Then I went over to talk to the operator to see what was going on. It was stuck. Margaret screamed  "get us down", I start screaming up "they will have you down soon, hold your sister's hand". My panic level starts to ratchet up as we wait for the mechanic to come. The area manager came over and agreed to refund our $20 (small consolation as your children are stuck high above the ground). Finally he got the ride working and they started to descend. They bounded off saying they loved the ride and wanted to go to the Racer (old wooden coaster) and then the Vortex (bigger sideways, upside down coaster) .... Seriously!?!

So we headed to the Racer, which was an old favorite of ours. It felt older and shakier than Chad, or I. remembered.  Chad passed on the Vortex. I came off  feeling like my sister post Space Mountain years ago, queasy and done with coasters. Luckily after the Vortex the girls decided they just wanted to do the water rides and head home. By the end of this day, Chad and I both agreed we were totally done with roller coasters.

Unfortunately, a few weeks ago we were put on a real life roller coaster with no clear end point.  I feel like our family and friends have been tested and proven wonderful restraints to keep us together as we get whipped around unseen turns. Yesterday I was miserably depressed as my counts in the morning had dropped yet again, and Chad and the girls boarded a plane for Vegas for his birthday trip while I sat in the hospital.

My counts dropped so much yesterday the doctors decided to start some different meds and do blood draws for labs twice a day. Last night my nurse told me my counts were up and I hardly believed they had the right blood. This morning they were up again!! My white blood count went from 0.3 yesterday am, to 0.4 last night and 0.5 this morning (versus a normal range of 4.5-11).  So still incredibly low, and the doctors have said not statistically different they'd call my counts flat, but I will take what I can get these days and I am ecstatic they are finally moving in the right direction.

I still have an incredibly long way to go, and am feeling very physically and emotionally exhausted, but really excited to hopefully be on the upswing of this ride.  I need to string 2-3 days of positive counts together to be able to go home. I have a start with Day 1. Fingers crossed the trend will continue through the weekend and I can finally go home next week!!

Thursday, November 1, 2012

Top 10 signs I have been in the hopsital too long...

Keep thinking of all the signs I have been here too long...

10. I get more mail here than at home.
9.  I know how to work most of the functions on the IV pump.
8.  I know all the nurses and they stop in after their days off to chat and catch up.
7.  I can tell who is coming into my room by the knock.
6.  I have the last room waiting for a whiteboard (they are waiting for the room to "turn" to put it up).
5.  I change my own bed linens.
4.  I am helping train the staff on the new computer system.
3.  I can sleep through the every 4 hour round the clock vital sign checks.
2.  I have developed a preference for the hospital gowns versus my own clothes.
1.  The food is starting to taste good.

Really the worst sign I have been here too long is I am starting to pick up hospital/long term institutionalized infections, but really this icks me out so can't but it on the list above...  they picked it up fast and gave me another med to address it. I, unfortunately, cannot string 2 good days together in a row. I am back on isolation and my white blood cell count is down to 0.3 (normal is 4.5-11). The potential silver lining is my body could be making white blood cells and just using them for the infection. All my issues now have been "caused" by the hospitals and medications combined with my low counts that they are trying to bring back in balance. Still keeping my fingers crossed I get to get out of here on Monday!!

Also, the other glimmer of good news is that even though my chemo started late on Monday, Oct 15, they start counting from that day so I am at Day 18 (vs 17 - I will take the extra day) towards count recovery. The average time for counts to start to go up is Day 30 so getting closer.

Chad and the girls leave for Vegas today. They called me on the way to school this morning. Margaret said it would be more fun if I could go, too.... totally agree with her, but have made them promise to scope out the fun stuff so we can all go back next year together. My mom and dad are here to keep an eye on me. Will try and pick their brains for other "classic Beth" stories to share.