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.