Friday, December 21, 2012

This week at the Withers

Really nothing most people would get excited about at chez Withers this week. The "big" news is that I am off house arrest and can get out a bit more. We went out to dinner as a family Wednesday night and the girls even commented it felt like it had been months since we had gone out (2.5 to be exact!). Otherwise we have been enjoying having less homework going into the holidays and more presents mounting under the tree. The girls have been persistent in their daily requests to open "just one present". They do this every yea,r and every year they have to wait until Christmas eve when they can open one. Have to say they are so geared up for Christmas I can hardly wait as well!

The girls were also excited to wake up to a dusting of snow today. They don't remember this ever happening since we were living in a very warm place the last four winters. Margaret declared this morning that winter was her favorite season. I suggested she wait until she actually went outside in it to decide for sure. Katherine thought the snow stopped at our house since our neighbor's lawn did not have as much snow on it. I am looking forward to fires in the fireplace over the next week and us all being home!

On the medical front, I have been assigned a personalized nurse and administrative contact. I've decided it is kind of like personalized banking but in reverse. With personalized banking you get access to special rates and services in the hope that you will expand your position at that bank. With personalized insurance provider attention, I no doubt fall into the high spending category, and I think the "personalized services" are to make sure my costs are minimized. So far they have not offered in value added service. They have more been auditing what my doctors have recmomended and what I am doing.

My hospital bill also arrived recently. We had been speculating on how much it would be and it came in less than Chad and I thought, but significantly more than what we paid for our first home. I will also say that the nightly rate at the hospital is more than a night at the Four Seasons (and so not worth the premium!!). I thought on many occasions in the hospital about how if they ran them more like a hotel they would be so much nicer and more efficient, but then again maybe people would not want to leave then when they were well.

The other surprise that the hospital bill held was the cost of chemo and other medications. They were over half the total bill...crazy. Since I had insurance I know the billed prices were the top of the scale but had no idea chemo was as expensive as it is.

I am feeling good this week and hoping for that trend to continue so that 2013 will start off healthy and more "normal" for us. Hope everyone has happy, healthy holidays.

Monday, December 17, 2012

The numbers are in

Had a good doctor's appointment today and my white blood cells are finally moving up! I am on Day 64 since the start of chemo and I am finally seeing the jump that most people see by Day 14-30.

I felt miserable end of last week and thought I had the flu (chills, cough, achy) so ended up at the doctor last week as well. My doctor thought I had the flu too. He started me on tamiflu and did the tests for influenza A & B. They came back negative so they switched me from tamiflu to another antibiotic then thinking it was an infection and worried that my neutrophils were up because of the infection. Today my neutrophils were still high and more detailed analysis of them showed they are back for real (lots of mature neutrophils versus new neutrophils). Below is my blood work.

PlateletsHemoglobinWhite Blood CellsNeutrophils
Normal Range 140-40011.7-15.53.8-10.81500-7800
10/10/2012 - At Diagnosis116.12.7100
11/12/12 - When I left the hospital 3110.51.1668

My neutrophils (which fight bacteria) are in the normal range which is huge. This means I can go out a bit more and return to helping wash the dishes and take out the trash (which I am oddly excited about). My white blood cells are still low and the lymphocytes which fight viruses are really, really low. Some of my other blood work is very funky (like the inverse of what you typically see) but of the big four blood count measures we have been tracking 2 of 4 are normal. So between having two of the counts in the normal range and getting most of my restrictions on my diet and mobility lifted I am very excited today.

So numbers are in and looking good. Hopefully my trends continue so I start off 2013 "normal".

Friday, December 14, 2012

So sad...

I am so sad today about the shootings in the elementary school in Connecticut. I feel so for everyone in that community. To have what is most dear to parents, their children, taken from them so senselessly. I think every parent sends their children to school thinking  it is a safe place for them to be. Similarly teachers and faculty go to school to nurture children, and help them grow, not thinking their lives will be at risk. When something like this happens it is deeply unsettling. I am sure for everyone associated with that school, and in that town, where people know people directly impacted it is even more disturbing and traumatic.

I was going to post on our crazy hospital bill that is in, or some special "services" I am now qualifying for as a heavy health care system user but really can't muster the energy to write about things that seem very mundane in the wake of the news today. I've tried in this blog to stay disconnected from commenting on major news events despite some big ones over the last few months (e.g., US Presidential election, Hurricane Sandy) to keep this more for updates on my health but really can't today (and it may open the flood gates).

Tragedies like today make me feel lucky that all I have is cancer. I am surrounded by my friends and family. There are good treatment options, and great medical professionals working to restore my health. I have a good shot at having a good life for several years to come.

To send your kindergartner off to school in the morning and then to get a call that they have been shot and killed at school is unimaginably awful to me. Today everyone in Newtown, CT, is in my thoughts and prayers.

Wednesday, December 12, 2012

Christmas is Coming...

I have the utmost respect for our friends and relatives who manage to get holidays photos of everyone in your family with everyone smiling and who can buy a tree and decorate it all in one day (or even a weekend). We have yet to master either of these skills.

On the holiday card photo front, we realized the other day we have two pictures of all four of us together from 2012 (both courtesy of traveling with our friends the Karstens). Yes, we could attempt to get dressed and have someone come over and take a festive photo of us but both Chad and I think this sounds like torture. So instead our card will be a bit of a photo montage. (Note I do not call it a Christmas card card because at the pace we are going we will be lucky to get it ordered by Christmas.) Chad and I are noticing prices are dropping the longer we wait to order our cards so we may switch to a New Year's or Valentine's Day card being the cheap finance people we are!

In terms of Christmas trees, after having an artificial one for the last four years we could not wait to get a live tree and have the house smell like fresh pine. This past Saturday we went to a place where they have both pre-cut trees and cut your own. We went expecting to get a pre-cut tree but none of us had every cut our own so we starting wandering through the field of trees (and the mud!). We found a great tree and so Chad went back and got a saw and sled to pull it on. The girls were all gungho to saw for about 2 seconds until they tried it. Chad luckily had a wood burning stove for heat for a period growing up so his sawing, and chopping, skills are well honed. In no time, our tree was down and ready to be pulled to the car. The girls promised to pull the tree if we cut it down ourselves. We positioned them on either side of the tree at the front with the rope, gave it a shove and they were off. They said a few times "this is heavy", but they stuck to their promise and pulled it the whole way (so glad they are now 8 and 10 and can do things like this!).

While the tree was getting prepped to be loaded on our car we had some hot chocolate, checked out the reindeer and got a wreath for our front door. It was a totally fun family outing. I told the girls on the way home about the only tree buying family trip I remember from growing up and how glad our day had not been like the one I remembered.

My mom wanted us all to go together as a family to get our Christmas tree. We just went up to our local high school where they sold them out of the parking lot. No one had much interest in going that year. We were all mostly in middle in high school. My mother almost never yells but remember her yelling that "we were all going to go, and we were going to all have fun". Yeah, nothing like forced family fun. It was awful. There were puddles and mud everywhere. We had waited too long to get a tree so the pickings were slim. None of us wanted to be there and we were all adolescent girls so we added to the joy of the experience with complaints, feet dragging and the like. It was pretty miserable.

My smugness of our joyous family purchasing of the tree on Saturday evaporated on Sunday when we started decorating the tree. We got the lights on, we had a fire going in the fireplace and started in on the ornaments. It quickly become clear that Chad had a vision for decorating the tree the girls did not share. Katherine and Margaret were both jockeying for position on the step ladder to hang ornaments, and for which ornaments they got to hang. It all came to a head when after Katherine had a big meltdown because of some dire injustice against her related to who got to hang which ornament. We ordered her to her room to calm down. She stomped off (making note we heard each stomping step) up the stairs with her back to us screaming she hated us and was going upstairs to pack to runaway... She paused once on the landing to scream she was runaway permanently, with extra emphasis on permanently, in case we were not sure about how long she would be gone.

No one ran away, everyone was playing happily later on that day but we did not finish decorating the tree that day (and it is still sitting half decorated). Tonight after homework we are going to try and finish but only if everyone can get along. If you come to our house and our tree looks a little light on the ornaments you can know it is not for a lack of ornaments but my insistence on halting when family activities cease to be fun.

So while I love fun family togetherness, I also think some of the big annual tasks or traditions can come with more expectations of being fun than actual fun at times. Christmas is a lot of work with the decorating, sending out cards, making cookies, getting gifts. It is one of my favorite times of the year and I love seeing all the decorations up, eating the cookies, getting cards, and giving gifts.  We are definitely trying to take a balanced approach this year and keep things both simple and fun, as much as we can.

My next appointment with my doctor is Monday. I am anxious to see what my blood work says...hoping for a bit of white blood cell progress.

Wednesday, December 5, 2012

Sister Support

One day when I was about Katherine's age, my mom was up at our elementary school with my sister, Molly, for her play practice. Two neighborhood middle schoolers were babysitting us for their community service hours. It was a really nice day and my sisters, Robin and Margaret, and I were playing outside in our front yard with the sitters.

We were playing a game called colored eggs. The person who is "it" stands in the middle of a big diamond (that is a homemade baseball diamond in our front yard with bushes assigned as bases) and calls out colors. Everyone else stands on "home plate" which was our front stoop. If the person who is "it" calls your color you try to run to first base without getting tagged. If you get tagged your "it". To "win", you want to get all the way around the bases and back home without getting tagged.

We were having a great time. My sister, Robin, has always been a good runner. Robin was just about six years old, but had made it around the bases and back home. She was going so fast she ran into the storm door and she put up her hands to stop herself. We'd all done this hundreds of times before. Today though, Robin's right arm did not stop when it hit the door. Instead, the glass shattered and her arm went through it. The main door was open so it was not there to stop her arm. She had hit an artery and blood was spurting out of her arm like a broken water fountain. The babysitters immediately ran to get help. Leaving me at age 9 with Robin, who was in tremendous pain and bleeding uncontrollably and little Margaret, who was 3 and crying hysterically.

Our parents had always taught us that if we were bleeding to wash it off with water. I put my arm around Robin and led her to the back door and down the hall to the bathroom. We put her arm under the water in the sink. With blood spurting straight out and a gash in her arm from her wrist to the elbow where you could see down to the bone the water did very little. Luckily, very soon our next door neighbor, Ms. Grimm, came over and had me get an old towel. She applied pressure to Robin's arm, and with the help of another neighbor, got her to the hospital and got my mom. Robin had over 90 stitches inside her arm and out. Her scar has not grown with her, so now it goes from her wrist to about halfway up her arm to her elbow, but it is still there. I am not sure how much Robin remembers about that day. I remember all of it happening and then cleaning up after with the help of neighbors when she was at the hospital with my parents. There was a trail of blood on the ceiling from where we came in, into the bathroom.

Later on in high school, I was a senior when Robin was a freshman. Robin did all the same sports that I did that year. We did field hockey in the fall, basketball in the winter and then track in the spring. In track, I remember warming Robin up for races and then watching on the sidelines as she lined up. Watching her line up to run I had more butterflies in my stomach than I did at the start of my races. I thought at the time it was what parents must feel like when they watch their children compete. Now either because my children are not that competitive, or I have more perspective on things (or both), when I watch my children I am not nervous. I just want them to have fun. Watching Robin though in her track meets I knew what it felt like to run those races since I ran them too. I knew how nervous she was for some of them, and I really wanted her to do well. I felt like each race she ran was an eternity. When she finished a race I felt relieved and tired, and my throat was always sore from cheering for her so loudly.

Robin and I both still run. When we are in the same city we try and get out for a run together before our daughters all wake up. This summer though it was Robin coaching me through our runs since I was out of shape from the move (and as I now know, low oxygen from the cancer). Robin has been there for me each step of the way since I found out I have leukemia. She has been there to listen whenever I have needed to talk (or just cry). She helped me through the stretch in the hospital when I was most sick. Now that I am not running, Robin is running for me. There is a race in DC in April that is totally dedicated to raising money for finding a cure for leukemia and lymphoma and Robin has signed up to run it.

Below is a link to Robin's page on the race. Her goal is to raise $7500 for research to find a cure. If you are looking for where you want to give this year (or next) please consider sponsoring Robin for this race.

The Leukemia and Lymphoma Society (LLS) was founded in 1949. What Robin says on her website is that when the LLS was founded if you were diagnosed with blood cancer there was very little that could be done for you, and it was almost always a terminal diagnosis. For the form of leukemia I have, all they could do for you pre-1980 was remove your spleen (if they caught it early enough) which would boost your counts but would not reduce the cancer. Now though, there are lots of different drugs that can be used to treat leukemia and lymphoma that have dramatically improved life expectancy for people facing these diagnoses.
Thank you again to the many of you that have already contributed to helping save lives of people with leukemia and lymphoma through donations to the LLS (special thank you to my last work group the P&G-A.S.Watson team!!). Thank you again to all of you that have donated blood  (special thanks to the 35 people who gave at the blood drive at work on Monday!!).

A friend sent me a T-shirt from a LLS walk she was part of last month that says "I walk because someone's life depends on it".  We have been so impressed and amazed by the advances the medical community has made in this area, but there is still so much more to do. Thank you to all of you that are helping to be a part of continuing to help people with leukemia and lymphoma.

Monday, December 3, 2012

Avoiding Germs

Since I am still at the point where my body's ability to fight germs is in the low category I have become hyper-conscious of both what I touch and washing my hands a lot.

Think for a second about what you touch after you wash your hands before a meal, but before you touch food. Do you open the refrigerator to get out butter or salad dressing?  Did you touch a doorknob, or turn on a light? Did you turn the faucet off with a paper towel or with your hand (touching the place where the dirty hand had turned it on)? Do you pass serving plates that others have touched?   Do you open a drink, or pick up your glass to have a drink? Who has touched these before you - a server at a restaurant, family member, friends, or co-workers?  Were their hands clean when they touched that surface? Were the dishes and utensils sterilized when they were cleaned?

Germs can be all over the place. Your body gets use to the "normal" germs in your home, and usually your body has the ability to fight off what it comes in contact with. We have always been into good hygiene, and as I have mentioned before I am a bit of a neat freak, but I've never been a germophobe. Chad and I have actually always thought that some exposure to germs was good to keep your immune system working and on the alert. I am realizing it is hard to stay germ free! In my time post the hospital at home though have luckily (so far) avoided getting a bad infection or virus.

I spent 6 hours at the UC Medical Center campus today doing various treatments and tests. The "highlight" of the day was the pentamidine treatment (which was totally nasty). It is an inhalation treatment to help prevent pneumonia. It felt and tasted like I was half drinking, half breathing in a horrid medicine for 15 minutes. As I sat through it I was mentally ranking it to the other new experiences that cancer has given me the benefit of being able to experience. I thought about how pentamidine compared to the liter of "berry smoothie" pre a CT scan or a bone marrow biopsy. I decided pretty quickly if I had to choose one of the 3 I'd go with bone marrow biopsy hands down. I'll take a needle driven into my hip bone over 15 minutes of choking on this breathing "treatment" having to choke down the vile contrast dye (aka berry smoothie) for a CT scan.

I also got blood work done and saw my doctor today. My platelets and hemoglobin (red blood cells) are still trending the right way. Most people have white blood cells recover first since they live for just 24 hours. However, 15% of people have platelets come back first. Platelets were the first to rally for me but looks like the red blood cells are winning the race to "normal". The white blood cells on the other hand look like they did not hear the gun go off for the start of the race. So my germ avoiding ways have to continue for awhile longer.

 PlateletsHemoglobinWhite Blood CellsNeutrophils
Normal Range 140-40011.7-15.53.8-10.81500-7800
10/10/2012 - At Diagnosis116.12.7100
11/12/12 - When I left the hospital 3110.51.1668

My doctor is doing a few tests to rule out a few possibilities for my slow white count and neutrophil recovery. Overall I am feeling good and he is happy with how I am progressing. I was cleared to drive again (at least to doctor's appointments). I got the okay to try a short run if I feel like it before my next appointment. Best of all today it was over 70 degrees in Cincinnati today and was just beautiful. I ended up having to traipse all over the UC Medical Center Campus that is really tucked back behind the hospital and is really nice. It was a beautiful day to be out walking around.

My next doctor's appointment is two weeks ago. Until then am just working on avoiding germs and building back my strength. 

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.