Wednesday, October 31, 2012

Trick or Treat?

Not sure about you but I am way more of a fan of treats versus tricks, but feel like I am getting more of the later lately. My white blood count had jumped up to 0.9 last week. We did the happy dance, and my doctors said it would keep going up.... then the last 4 days it has been down (0.6, 0.5, 0.5, 0.4). My body is clearly not making white blood cells. They apparently just live for 24 hours so once your body starts making them they ramp up quickly. My doctors have said that the average number of days it takes for your body to start making white blood cells is 30-60 days once treatment starts. I am on day 16.

Unfortunately signs of infection came back last night too. My body is a bit stronger being a week out after chemo (the charge nurse who has been off for 5 days just stuck her head into see me because she heard "Withers" looked so much better) so hopefully will not be as sick for as long. Luckily still have time to be sick and be fever free for 48 hours before Monday, but definitely a bummer.

On the treat side this week, the girls came up to see me Monday night to give me a much needed makeover and play a game. My parents brought them to give Chad a mini-break. The girls continue to be unflappable. For infectious control reasons they are not allowed in my room so I had to meet them in the lounge down the hall. I have to wear a mask when I leave my room (note I am still only allowed to walk one hall and a few nurses freak if I leave my room with my low white blood count so mostly stay in). I also was finishing up a blood transfusion so was pushing my pole with blood hanging. I thought Margaret in particular would be freaked out by this but they actually thought it was cool and were a bit disappointed when they got home and told Chad about seeing me get blood and found out that he had seen it too.

When I got to the lounge the other night, the girls had their toiletry bags open and they were ready to swing into action. Margaret was on nails and Katherine was on hair. Margaret quickly realized she had brought 10 lovely colors of nail polish, and I have 10 fingers so instant idea of what "pattern" she was going with. After many years of art lessons she is very in touch with the color wheel and she went with hot colors on one hand, and cold colors on the other hand... and no one that has been in my room since has failed to notice them :).

Hair being easier to experiment with Katherine played around with it and all her accessories for awhile. She tried out some free VS styling implements from our days in China. Those were not to her liking so she scrounged and found some rubber bands, and she finally landed on two low braided pigtails... have to say actually liked the do and might repeat it.

Also, had a nice visit with a friend yesterday. I forget that I am giving everyone I know (and then some) updates on what is going on and sharing my family stories so I am sure I will repeat myself. When Chad and I lived in Geneva we had dear friends that helped us realize that even then, we had only limited stories and were prone to each sharing them independently with them (then repeating ourselves). They had a nice way of pointing that out saying, "this is Withers #13, an especially good story." So when I see you and repeat myself know it is not the effect of the cancer, or chemo, but it is a pre-existing condition.

With the cold, wet weather not feeling too disappointed about missing trick or treating tonight. Keep thinking about what a European friend said once when we were explaining Halloween. Their comment was what an odd tradition to dress up your children in costumes and send them out begging for candy. As a parent, now am finding it even odder because I don't want them to eat much candy!! So hope tonight the girls get to get dressed up, enjoy the spectacle of walking the main trick-or-treat drag in our neighborhood, but quickly get tired and cold and want to come home :).

Happy Halloween.

Monday, October 29, 2012

Countdown to going home

Feeling good but counts are still low. Getting some blood today. Also tentatively agreed with my doctor as long as I stay fever free I can go home next Monday even if my white blood count is still low. I will just then need to spend my days at the Barrett Center getting infusions (IV antibiotics, platelets, blood, etc.). Excited to be feeling better and have a base plan for getting home!

So if I don't post the next few days assume I am feeling good and just working on growing new bone marrow and blood cells, and counting down the days until Monday!

Sunday, October 28, 2012

Happy Birthday to Chad and Computer Glitches

Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, dear Chad,
Happy Birthday to you.

We'd been hoping one of Chad's gifts would me being home by now. We've done lots of nice family skyping this weekend, girls and Robin did a lot to make Friday night and yesterday special, and thanks to Kevin and Mike for taking Chad out last night for a birthday dinner. Still looking like it will be end of this week before I get to come home.

I was bummed to miss Blue Man Group yesterday with the fam but sounds like it was hysterical. The big Vegas trip is coming up next weekend and that I am hoping they take notes on what they like so they can take me next year :).

Lots of nurses keep asking me if I am planning things to look forward to when I get home and I am such a planner I am right now bummed out about all I am missing and reluctant to plan anything for when I get home.

Has been a crazy weekend here at UC hospital. The whole hospital switched over to a new computer system yesterday morning. Let's just say the training clearly had some gaps. I was glad I was feeling well and was awake a lot of yesterday to stop getting blood drawn a 2x time (not needed), to correct what meds I had, and had not had, to explain why I was not getting chemo yesterday, etc.and to help my nurse in general with the basic functions of the computer. Crazy!! They are moving to the EPIC system which most other hospitals in town have been on for awhile so the younger staff that had worked other places was having no problem but they were not covering me today. Hopefully no one was hurt in the cut over. I will be glad to see the regular Monday staff tomorrow.

I am feeling okay today just tired. My counts are all lower. I am getting more platelets today and probably blood tomorrow. My white blood count (WBC) dropped again but they said that was no cause for concern. My Tuesday they should start to climb. Staying fever free and getting my WBC up is they key to going home so hope those 2 things come together soon!!

Saturday, October 27, 2012

Sisters

One of my earliest memories is a bit of an infamous story in our family. Our parents had gone across the street to the neighbor's (for what I am sure is a well deserved night out). They could not find a sitter so they waited until my sisters and I were asleep and came back and forth every 30 minutes to check on us. During one of the breaks, I woke up. Like any 4 year old was looking for my mom, or dad. When I could not find them I woke up my 2 younger sisters, sat them on the top step of the second floor, patiently explained to them that mom and dad had gone and were never coming back. They, not surprisingly, started to bawl. They asked me how I knew that mom and dad were not coming back and I explained to them I had searched the house, mom and dad had never done this before and that could only mean that they had left us. I tried to reassure them I would take care of them and everything would be okay (this did not do much to stop the tears or make them feel better) and then I called 911. I was in the middle of my explanation to the nice 911 lady on why I was positive my parents would never return when they did. My dad took over from there with the nice lady on the phone. Luckily massive social service involvement was avoided and we were all glad to see I was wrong.

My sisters and I are close in age (the oldest 3 of us were born across 3 years and then 5 of us in 9 years).  Growing up there was always someone to play with. Some days that meant if you had a specific activity in mind you could find someone to do it, other days it meant really big scale play with enough people to really play all the parts of restaurant, do a show, or play field hockey in the backyard. Like most siblings, we did not always get along, but we have always loved each other and ferociously protected each other. Our spouses say we are like kittens when we get together. We all like to be touching each other, sometimes we are a blur and it is hard to tell who is doing what, and we all talk at the same time (we can all understand each other but apparently this is unintelligible to our spouses).

When I found out I had leukemia two weeks ago I know my sisters and parents had to restrain themselves from getting on a plane right away to come. We talked with everyone and staggered times. My sister, Robin, was going to be here for two weekends in a row but when I had a very rough start to the week she changed plans to stay all week. She has helped in so many ways and it has been great. This weekend is the changing of the guard and my parents come in town and Robin heads home. It was very sad to say goodbye to her last night. It is making me tear up just thinking about it. She has been here during a low week when we needed help. Having her spend 3 nights in a row here at the hospital meant so much. The evenings were much more fun. She spoke for me in the nights when I was too sick to speak for myself to the nurses. She has sent me pictures daily of the girls and the fun things they have been into each day. When I told Robin what an act of love it was to spend 3 straight nights in the hospital chair-fold out bed with me her response was she was glad to do it and "it was better than sleeping on the night flight to Asia in coach" :).  Thank you not only to Robin, but to my brother in law, John, who was not only supportive but pushed to have Robin stay to help longer than expected.... thank you, John.

I also feel lucky that through each stage of my life I have friends that feel like sisters. They are friends that I know would do anything for me, and I the same for them. You have all been showering me with so much love through your notes, calls and thoughtful gifts. Thank you.

No big medical update today... feel about the same. My white blood count that was cause for the happy dance yesterday is down and they are not sure why. My doctor is not making rounds this weekend so no big new news until Monday.

Just feeling lots of love for all my sisters :).

Friday, October 26, 2012

Cause for some happy dancing

Last night my sister, Robin, and I were hanging out (guess where) and someone came into the room to pick up and take away my special chemo trash box signally I am officially done with that phase (for now)...so we did a little happy dance.

I had a fever free night and then my white blood count actually went up versus yesterday!! This was cause for happy dance number two. Now while the direction is positive, my counts went from 0.4 to 0.9 so still very, very low.  My platelets were down so got more of those today and am still hooked up to an IV for fluids and antibiotics and still was so exhausted slept almost all day but definitely felt better.

We peppered the doctor with all the questions on how long before xyz given the turns in the right direction.
Obviously first big question is when I will get out of the hospital. It depends on how this weekend goes. My counts have to come up more. He sounds like it will be second half of second next based on what he said indirectly but tune in on Monday.

Other instructions on how to stay well until my counts recover (hopefully in about 8 weeks) are below.
- No contact with crowds
- Avoid being around anyone sick, or who has been exposed to someone sick
- Okay to walk around the block (as long as their our benches for me to sit down on along the way.... hopefully I can build up beyond the block)
- Okay to walk the dog if I feel like it but not okay to pick up the poo
- Not okay for the dog to sleep with me
- No soft cheeses, berries, etc. (same food restrictions as now)
- No alcohol or caffeine
- Everyone in my family needs to get a flu shot

In addition to my blood work they have been watching my kidney and liver labs daily since they process the chemo, all the other drugs and the leukemia cells. My kidneys are doing great. I had previously (years and years ago) been diagnosed with something called Gilbert's Syndrome which means my body always has a slightly elevated bilirubin level. My bilirubin levels have been bouncing around and getting higher. My doctor thinks instead of Gilbert's I might have a genetic disorder that causes the accelerated breakdown of red blood cells (not normally an issue at all unless you have leukemia). We will not be able to sort that out until my counts recover and I stop getting blood transfusions. It could be a bit of a complicating factor but one that could be dealt with. Enough other things to worry about now...

So, good to get some positive news and feel a bit better. I was up for most of the morning, finally felt like eating lunch and was glad my friend, Julie, was able to come by. Then I was totally wiped out slept all afternoon until Chad woke me up at 5:15 when he stopped by. Definitely going to take awhile for my body to build itself back up but cheered by the fact that looks like things are moving in the right direction.

Thursday, October 25, 2012

Turning a corner (I hope...)

I feel like for a few days the news has been the same. My blood counts are all very low, I feel crummy, have a fever, blah, blah, blah. There is much of the same today my counts are still very low, felt pretty crummy for most of today but finally have had a fever free day. Fingers crossed, hopefully, this is the end of the mysterious fevers. All the tests they have run to discover the cause have come back negative. They think this could be because they were proactively giving IV antibiotics and antiviral meds because my white blood counts were so low so whatever I have (or had) was partially treated so not growing on one of the many cultures they are working on.

This morning my doctor said to expect to be in the hospital through the weekend and then Monday morning we can reassess how much longer I need to stay and when I get to go home. The PICC line will stay in and I will be back at the office for daily blood draws and transfusions as needed. Chad will get to double at night as home health nurse giving me my white blood cell stimulant shots and checking blood return on my PICC lines - fun, fun - just the career enhancing opportunity he had been dreaming of.

It has been a treat to have my sister, Robin, sleepover with me the last few nights at the hospital. Last night we were mentally planning a sister weekend away next fall (or whenever my sister, Margaret, is back in the country again). Really the base is really low when you start from a hospital room so am sure we can find something to build on from here.

Assume no news is good news if you don't hear from me the next few days and will let you know if anything changes, or otherwise will let you know what the word is from the good doctor on Monday.

Wednesday, October 24, 2012

Side Effects of Chemo

I thought the side of effects of chemo ended when the drug stopped pumping into me.  Turns out the post chemo side effects tend to be worse. While you are on the drug they also pump you full of powerful anti-nausea drugs that move to oral on demand meds post, but the chemo stays in your body for 48-72 hours after it stops (halfway through that point). The nausea has been hitting me hard and am not sure if it is chemo or infection/fever related but ready for it to end.

I have not lost my hair. It is not a common side effect with this chemo drug but my reactions to drug have proven non-standard. If anything I think my hair has gotten smoother. (Can't tell if this the drug or the fact I spend 23.5 hours a day laying down, more likely the later.) I have started to subscribe to my daughter, Katherine's, form of hair brushing which consists of running her fingers through her hair. Don't tell her I told you this because I still think she needs to use a hairbrush before she goes to school! But for me on solitary confinement in my hospital garb, floating in and out of fevers, it does the trick.

One side effect of my chemo drug, cladribine, is aneorxia. My mysterious weight gain was all steriods related and went away as fast as it came. I feel so sick I have no appetite now hence the crazy milkshakes, but expect that to end with the fevers and lingering chemo drugs in my body.  I love food. One of the reasons I accepted my offer at P&G was it was the only company where I interviewed where my dinner host ordered dessert. One of the reasons I feel in love with Chad is he is always willing to go halfsies with me so we can both try two things, and he ate desserts with me. We have driven (literally) miles before to go to restaurants for meals and have rarely been disappointed. So I have a hard time imaging not wanting to eat but for those of you that will be seeing me more often after I am out of the hospital please remind me to keep eating.

I also feel humbled as a side effect of the chemo. So many small things I have not even thought about are so hard now. I am a fall risk because with low platelet count. If I fall my body does not have enough platelets to heal bruises, or stop bleeding, so falling and hitting my head is especially dangerous (could cause a brain bleed). So I get an escort to the bathroom. I am still allowed to shower but there is a seat I am helped into, a bar for me to hold onto and a cord to pull if I feel dizzy.  It feels like my sturdy, strong body is on hiatus and hoping it finds it way back soon!

Each day we seem to be learning more and more. This has definitely been a crash course for us in hairy cell leukemia and chemo. Hoping for days where I feel better more often than not to return soon...

The Nadir

The nadir is the period after chemo, or radiation, where your blood counts bottom out and you feel the worst. For your white blood cells and platelets, it typically falls in day 7-14 after treatment begins. I am definitely feeling like I am in this period. For red blood cells it comes later and sounds like for a month a will be very susceptible to infection, and more susceptible than normal for 9-12 months.

I am still struggling with high fevers (103F). When they hit I get nauseous and crazy chills like I have never had them. Luckily good old Tylenol works. Interesting I cannot have other traditional fever reducing medicines because they can thin your blood and I don't need that. Right now my blood transfusions are on hold until my fever breaks.

When my fever is going up or down I feel miserable but have had a few breaks in it. I have not been feeling like eating so they have started me on special concoction shakes. They actually don't taste too bad (I just wish they had not shown me the list of ingredients which includes frozen egg - that one makes me stomach turn).

I am feeling very weak, but luckily am still allowed to shower. I had a chair I had to sit in to shower. I am feeling far from my normal self....

A highlight of today was as surprise visitor. She is a mom of a boy in Margaret's class who is an oncologist at UC. Someone had told her about me and she was a chaperon on the field trip today and Margaret was in her group. Can't recall how I came up but Margaret told her I had hairy cell leukemia but had a fever so needed to stay in the hospital until the fever ends and I was getting platelets. Total proud mom moment, she asked Marg if she knew why this illness was called hairy cell and what platelets did and my little one knew:)... Last night Chad told the girls I had finished chemo but I had a fever. When he told them I finished chemo Margaret asked, "Did Mommy do a happy dance?". The girls continue to do well and help keep us in balance and tied to the facts.

So hoping for the fevers to stop and my counts to start to recover....

Tuesday, October 23, 2012

The end of chemo

Good news today is I finished chemo. Bad news is I spiked a fever of 103 in the night  and have felt absolutely miserable all night and day. I am technically in isolation so the number of nurses and doctors has dropped and they all come in wearing gowns, masks and gloves.

They are doing lots of test to figure out what is causing the fevers. The flu screen came back negative. They are pumping me full of antibiotics and antiviral meds. Starting at 5 today I will get a white blood count shot (which I will get daily for awhile).

Obviously this will extend my hospital stay. I have to be fever free for 48 hours before I can go home....

Please keep me in your thoughts and prayers that tomorrow will be a better day than today.

Mile 18

I've drafted this a couple of times but events overtake me before I'm happy with a post and then I star over.  So this time I'm going to post regardless.  I've been told by marathoners (of whom I am not one) that you often hit a 'wall' around mile 18.  Not sure but I think we're at that wall.  Not a fun place but I know Beth will push through it just asshe did the marathon.

Have struggled through the weekend to get all the meds stuff sorted out and had a lot of adjustments to deal with nausea etc.  Starting yesterday we added a possible infection to the list and they started IV antibiotics. Overnight Beths fever spiked tonight so I think we've pretty much confirmed the infection and so have been giving Beth a lot of IV fluids and switched to a new antibiotic. Since Robin stayed over to help out I was able to come straight to the hospital.  Ben isn't feeling great but is doing well and holding up like a champ.  Best news: the chemo bag comes off in 5 minutes (maybe less by the time this posts!), hitch is a huge milestone and will give Beth's body one less thing to deal with.

Mildly entertaining story - Beth's fever went up overnight so I came into the hospital around three; as you can imagine from Beth's last post, some of the people who have urgent medical needs at this time of day have some lifestyle issues, to put it mildly, and the whole hospital is locked down like a supermax facility. (ok, maybe not supermax, but harder to get in than the federal building downtown).  Only the ER is open, and that has a metal detector. To get past the waiting room requires a pass (secured only after the receptionist calls the unit for permission, an armed escort to the elevator, then someone from the unit has to let you in past those locked doors. I guess that some of those shooting victims must have people who are still mad at them and come to finish the job.  Anyway, I made great time to the hospital, but took 15 minutes after I got here to get to Beth's room.

At home the girls continue to do great.  Tonight was happy and the girls were working away on homework contentedly for most of the night while Robin hung out with Beth at the hospital. They seem to be comfortable with the idea that mom's here and getting better and that they know what they need to, which is the attitude I'd like them to have. Being able to hang out with them is great for me too - they're usually fun and take my mind away from all the stuff that's going on here for a while.

At some point I'll come back and try to tie up some of those thoughtful posts that I've half drafted, but it may be a while and I hope that Beth will cover them on her own before I get to it.  Keep us in your thoughts and know that all your support and encouragement mean a lot to both of us.


Monday, October 22, 2012

Good Perspective

Many of you know I am a bit of a neat freak (probably borderline OCD). I have never struggled with P&G's clean desk policy (love it). I have never understood how Chad passes the clean desk audits (sorry, Chad). I shared a room with my sister, Molly, for years growing up and when she veered towards the messy side I instituted a tape line down the middle of the room to separate her clutter from my space. Chad and I have been married 16 years and have just reached the point where I have shared a room  with Chad longer than Molly, and he has, so far, evaded the fate of the masking tape line :)). The playrooms in our homes have always had a door I could close to not see it. The girls are pretty convincing that they are "still playing" and it will "ruin everything" if it gets picked up at the end of the day. Being busy and tired I have not really wanted to push them to clean up everyday anyway so the door has helped us find that happy place in the middle of only periodic clean ups. Some of you have my neat freak compulsion in action by me helping pick up your car when you give me ride, helping with dishes or other chores. I honestly like to pick up and am an external processor (hence a totally public blog when I get cancer) and being able to keep order in my external life has always been helpful to me. So please do not be offended if I toss some trash from the back seat of your car next time I ride in it (feel free to do the same in mine)!

Anyone who has seen my hospital room would see chemo is teaching me to let this go (probably in a healthy way). The table by my bed is is the epicenter of my life. My computer, my phone, water, magazines, books, food when it is meal time, lotion, puffs (you get the point). The first half of the week there was a distinct order to it and now it looks like an explosion of items and I am okay with it.

This is good prep for getting ready to go home. Chad I both get the dishes done but we have very different timetables for doing this activity. We have agreed I just need to stay on our second floor for the first week when I am just suppose to be sleeping so that I do not try and do my normal activities or things I think "need to be done".

The other piece of perspective I have gotten here at UC hospital has how lucky we are. I have lived closed to this hospital for years but never been to it because we were never sick enough. Since being here have learned it is a regular occurrence to have gun shot wound victims dropped off at the Emergency Room door and then whoever drops them off speeds away so as not to be questioned. On my unit (bone marrow transfer chemo floor), my nurse told me one patient was trying to leave against medical orders, and she busted another getting high in the bathroom and called the cops both one night this week. They were "overflow" vs chemo patients. She was clearly frustrated that most of the floor was here fighting for their lives and then there were other individuals here not making choices they could to be healthy. Another learning from my hospital stay is how lucky we to have strong values, family and friends.

Thank you to Mary Kay, Carolyn, Jack and others who are donating blood and platelets!! Thank you to Patty for becoming a bone marrow transplant donor!! I literally would not be alive if people did donate blood and platelets. I've had a few more platelet transfusions over the last couple days and am getting more blood tomorrow.  I cannot image any other leukemia patient would not feel the same way. Thank you, thank you, thank you!! If you have not given before but are open to considering it check out the Hoxworth website or if you work at P&G they will be at the GO on Nov 6 you can get an appointment to give by calling 451-0910 (ext 41015) or register online at www.hoxworth.org/pg (check the email that went out for the code).

Still not feeling great but feeling lucky tonight to have such a strong group of people supporting us in so may ways! Thank you all again.

5 hours of chemo left and counting!

Round 7: Chemo is kicking my butt

Long day again day with lots of tests, meds and drug induced sleep. I woke up very nauseous and started vomiting. That lead to one med that gave me muscle spams, and other side effects, which lead to another drug that knocked me out.

I am also looking very jaundiced and my standing blood pressures versus my sitting and laying blood pressure was not good (extremely low) which lead to more blood work, blood cultures and an abdominal ultrasound. They think I have an infection somewhere and they are trying to figure out where but have already started IV antibiotics to zap it.

Luckily Chad was able to stay with me all day and my sister, Robin, will be back up here tonight. I am feeling better than this morning just tired from the drug induced sleep I have been in most of today.

12 hours left on the chemo. Right now it looks like best case I will get to go home on Thursday it just depends on how the search for the infection goes.

On a lighter note, the same nurse who gets credit for the, "saddle up comment" was talking about the cost of medication when you leave the hospital and said that one of the anti nausea drugs was very expensive so he told some people if they wanted a much cheaper alternative to buy nickel or dime bag from friends to help with nausea instead (had to have Chad explain this to me so will not be my route of choice). Really hoping the nausea ends with the chemo! (or at least when it is out of my system).

Cancer and chemo suck.

Sunday, October 21, 2012

Round 6: Hard day today

I was hoping today would be a post that no news was good news... but I have felt pretty bad today. My counts are all lower and finally got some infusions. I've struggled with nausea, had a  low grade fever and a few bleeds. The doctors are not worried but are doing some more tests to see if, and where, I have an infection. I don't feel good at all. So am sleeping (and crying) a lot today. This is definitely a down day. Hopefully tomorrrow will be better.

Saturday, October 20, 2012

Round 5: Different kinds of fevers

While we lived in China the girls and I would come back each summer for about 5 weeks. We'd spend the first few weeks in Cincinnati and I'd work and the girls would go to camps while we all got over jet lag. Then we would go to Virginia to see family. My parents house was always home base for the VA time and my parents (better known as Gram and Grampi) got Katherine and Margaret into America's Got Talent.

You have never seen more dedicated, or involved fans, than Katherine and Margaret. This session it was super exciting to get to watch the end versus getting email updates. In one of the later episodes, Justin Bieber was on as entertainment singing, "As long as you love me". This is a song I like so was singing along and trying to get Margaret to dance with me (unsuccessfully) when she asked me with a horrified look on your face, "Mom, do you have Bieber fever?". I laughed and said, "Yes, I think I do." I was then peppered with questions to confirm my diagnoses. That week every day on the way to school it was the same question, "Mom, are you sure you have Bieber fever". I honestly don't know if I could name any other Justin Bieber songs, but I was sure I liked that one and then sighed and said yes, I must have Bieber fever.  Margaret has worried about my well being since. When we saw a billboard saying he was coming to Cincinnati I asked if anyone would go with me and got told they just could not do that for me, I had hit a limit with Margaret (and Chad for sure, Kath was willing to consider it:).

A good friend sent me a hospital care package with at Justin Bieber spiral in (which I love, thanks, Becky!) which reminded me how traumatized my children were over my incurable Bieber fever. Luckily they are doing much better with hairy cell and view that as completely treatable. Katherine this morning told her dad and aunt it was going to the best day ever because another cousin was arriving and she has a sleepover birthday party tonight so all is well on the home front.

Here at the hospital I continue to fall into crazy statistics. Few people at all get this disease (fewer people are female), few people have any adverse reactions to Zofran for anti-nausea  (fell in that camp), few people have delayed reaction rashes (got this one too), and few people make it through chemo and the week after without a low ANC (absolute neutrophil count) fever ... really hoping I fall into this group. One of my nurses said it would be like winning the lottery if I don't get a low ANC fever. My white blood cell count is so low, and going lower, it makes me very susceptible to infection. They have been on antibiotics and anti-viral medications already. If I don't have a fever before Tuesday I get to go home. I will then have to come back to UC daily for blood work and transfusions but will at least get to sleep in my own bed which will be huge. They are also considering letting me leave on the early side because we live so close to the hospital so I can get back fast if I do spike a fever. So all and all nothing big new today just hoping to ride out the next few days without an big new medical developments.

Chemo Comedic Moment of the Day: I am very glad they let me wear my own clothes but given there are hazardous and toxic signs everyone thought we should check on whether my clothes this week needed to be washed separately. I have a male nurse today who we asked this question. He was not sure on washing together, or separate (we are going to go with separate). He was certain that all my body fluids would be "hot" and could burn others for 48-72 hours post chemo. So he turned to Chad and said that we were young and once I got out of the hospital "saddle up but be careful you don't get burned".... seriously?!? OMG not, at all, the advice we were looking for!!

Cancer Fun Fact of the Day:  A friend asked the other day if leukemia was cancer. It is cancer of the blood. They don't talk about stages of leukemia like other cancers. The way we had this explained to us was with things like breast cancer, your breast cells are just suppose to be in one place. If they show up in your lungs, liver, etc. then you know it has been around longer. For cancer of the blood your blood is suppose to everywhere so by definition the cancer is all throughout your body.  (they have done all kinds of scans to confirm no metastatic tumors.) That being said my leukemia clearly "smoldered" for awhile and I've likely been living with it for over a year.

I'm getting tired of 3am showering when my chemo bags are changed.... just 2 more to go after this one!

Friday, October 19, 2012

Drug-induced Paranoia - But Not to Worry!

Chemo is not easy.  It has a number of side effects, which can include paranoia, irrational thoughts, and sleeplessness.  And that's in the spouses.

I stayed with Beth longer than normal last night to help her through the headache (thanks to Molly for coming to our house on such short notice to watch the girls!) and left once she seemed comfortable and the morphine was clearly working.  Whe I got home the girls were enjoying their 'Friday' night (no school today) explaining the TV show The Voice to Molly.  They still are handling the whole thing very well, and were fine with my explanation of what had made me stay at the hospital.  They understood how sometimes you need someone to sit with you when you don't feel good.

Kids go down easily, and as usual I wake up after a couple of hours.  Unable to get back to sleep and recalling that I'd promised to connect with colleagues in China, I head to the family room to start on the 'night shift' of work.  After a couple of hours, two phone calls and catching up on email, get back to bed around 3:00 am.

This morning, as usual, I texted Beth to say good morning while walking the dog.  No reply. Oh, good, I think, she's left her ringer off so she can sleep in a bit.  So I waited; at 7:30 I call again to check in, figuring the change of shifts at 7:00 had surely woken her up.  No reply.  Hm.  Must have left the ringer off, so I'll just try to check with her nurse and see if she's still resting.  On calling the switchboard, I give Beth's name and listen to the operator as she looks at her screen: "OK, let's see...  Hm.  The thing is... - hold on for a minute." After holding for a minute, the call drops.  While a moment earlier I was torn between a desire to see how Beth was feeling after the night and a desire to let her sleep, I was now surprised that the hospital had put in a computer system that would let the operators know when a patient was coding.  (See also, "Paranoid Psychosis".)

Deciding that was unlikely enough that I should try a couple more times before I headed to the hospital, I tried again to be connected to the nurse or unit clerk for her unit just to see how Beth had slept.  Multiple rings, disconnect.  Same the next time.  A fourth attempt gets me the unit clerk, who seems rushed, puts me on hold and then disconnects me.  Paranoia is now fully in control of my cerebral cortex.  Had I missed another phone call?  What kind of hospital lets terrible things happen to the patients without calling the spouse?  Definitely time to call the Doctor.  His 'you're interrupting my breakfast' voice is different than his kindly patient voice (although not evil, definitely not the same - more gravelly, less soothing).  He assures me that while he hasn't seen Beth's chart yet this morning, he would know if she had coded or had any adverse drug reactions.  I now worry that he will hold this against me (or worse, Beth) when I see him in two hours at rounds.  I try the unit again and finally reach her actual nurse who assures me that she's fine and has just been asleep.  Beth calls 15 minutes later and sounds much better.

Net, all is well - but let me tell you, this chemo is powerful stuff.

PS - the Doc was very pleasant about the whole thing.  Beth had a great morning and day and we are all excited that this is 'hump day', where more is behind her than ahead, and with the exception of this issue, which wasn't even caused by the chemo, is progressing so smoothly.  Keeping our fingers crossed that she can continue the week without any fevers.

PPS - My other delusion is that I'm going to be able to develop a real understanding of this in the time Beth is in the hospital.  I've been doing a fair amount of research and have a nice little pile of clinical study abstracts and articles that I brought to the hospital.  The gang of doctors profess to be very happy to have engaged patients and family who ask lots of questions, but I am increasingly sure that I am only scratching the surface and that med school is probably hard.  For those interested, the best article I have found on Hairy Cell Leukemia (which seriously needs a better name) is in the journal Blood (http://bloodjournal.hematologylibrary.org/content/115/1/21), which turns out to be a weekly, although not one I've seen in the supermarket checkout line.  For those interested in this kind of thing, I would also recommend The Emperor of All Maladies, which I read a couple of years ago when it came out, found both educational and inspiring and may read again once we're through this.  It's a much more interesting read than the Blood article, although about 50 times as long!

Round 4: Eye on the Prize

When the girls were little we were infamous at their doctors office for the piercing screams and thrashing when it was time for shots. Despite their protests the outcome was always the same... 1-2 nurses plus me pinning them down, while another nurse gave them their shots. Clearly not fun for anyone involved. The girls are very stubborn, strong willed and loud (I don't know where they get any of those traits from).  We started asking friends what they did to make shots not so bad. I am sure to some extent the girls grew into this technique, but what we still do is to focus on what they get after the shot. It started with lollipops. They sit in my lap and I have arms across them holding them tight (and usually a leg for good measure) then they close their eyes and say "lollipop, lollipop, lollipop."

I am not myself a huge fan of lollipops but have been trying to keep my eye on what comes next as well both big and small.  I am looking forward to getting back to walking our dog with Katherine and helping Margaret learn to do a back walk over. I want to travel with my family and explore the US like we did Asia. I'd also like to finish unpacking the house from the move!

I have also been trying to keep in mind that my time in the hospital is limited and just helps me get to my goal. When I ran track in high school, I had a similar approach. I mostly ran the 4x800 meter relay. I was the coachable member of our relay (which means usually the slowest runner). I would tell myself it was less than two and a half minutes of my life, that was it. before each race. I could go all out for that period of time to get the fastest possible time for my relay partners.  It has always helped me to set goals to focus on and then reel them in.

As I hit the halfway mark on chemo, my goal is full remission of leukemia which I keep reminding myself. Yesterday was a rough afternoon/evening. The anti-nausea med they put me on gave me a raging migraine, that lead to a head CT scan (which was normal) and some morphine. I have never had a migraine before and I hope to never have one again. I know so many people that do and I cannot believe how excruciatingly painful they are. I fancy myself as someone with a rather high pain tolerance who actually enjoys things like running up Baiyun mountain in Guangzhou early in the morning. Yesterday, any light, sound, movement, everything made the pain worse. The med that caused the migraine has been discontinued and it has the honor of being the only medication I have ever had an allergic reaction to. Then later in the night (or really early this am) post the headache I took a shower when my chemo bag was changed and had nausea hit like I have never felt it before (apparently not uncommon for hot water to trigger nausea with chemo). I got a different, but very effective med and felt much better. So not a lot of sleep in the night but made up for it this morning.

The update from the doctors today was everything is still looking good. My counts are all down again but now low enough yet for transfusions...They are right on the line vs below it and since they have been here under their watchful eyes I have to wait another day. I got a different kind of boost today in the form of getting to hang out with one of my sister's this afternoon. It was great to see her. She was surprised by how "normal" I look which I am taking as a good sign :). My nieces made some beautiful cards to add to my wall.

So today feeling good and really glad to be more than halfway through with this chemo treatment.

3.5 bags of chemo done, and 3.5 bags to go.

Thursday, October 18, 2012

Round 3: Too tired to be bored....

Believe it or not I am not bored yet in the hospital. Don't get me wrong I can think of 1000+ different places I would prefer to be, but between the low blood counts and chemo napping is my new favorite activity. I know everyone who knows me is finding this hard to believe since I am a do'er and am downright terrible at sitting still for too long. I swear I am telling the truth though about not being bored. My room continues to be a revolving door, and in between the visitors I fill the gaps wtih napping. Today on top of my normal entourage, I also had the IT tech for the hospital stopped in to make sure the computer in my room was set up to print from (new computer system launching in the hospital soon) and then some engineers came in to change water filters... very exciting day :).  I am well stocked with books, movies, etc. and have not made a dent in my supply yet, the lure of sleep has been too great.

The word from the doctors today is everything is going well so far. My blood counts are all lower but that is what they expected. They are not yet low enough for transfusions today, but there is a clear downward trend. Being a bit of a numbers person can see tomorrow will be my lucky day for more transfusions if the current trend holds, with the biggest need being for platelets. I actually hope to get more blood too. I feel a bit like a vampire saying this but getting a blood transfusion gives me a boost of energy so looking forward to my next round.

My oral meds are getting adjusted each day. Today they stopped the steriods which they had been giving me for nausea and switched me to an anti-nausea drug. I am hoping this also means the end to my miraculous gaining weight on chemo trend! The nurses all think it will be. One of the biggest drags of being here is being woken up at 5:15 in the morning to step on a scale.

The only notable side effect I have today is a headache. We are monitoring it and I may need to get a head CT scan to check it but otherwise everything is looking good.

Tomorrow is a big day. I hit the halfway point in chemo and my sister and her family arrive. I feel like it is a bit like the calvary riding into town. The girls are super excited to see their cousins and have multiple night sleepovers with them and get in some Halloween crafts, pumpkin patch and carving, and I am excited to see my sister and her family.

So not much news today. Thank you again for the continuous outpouring of support and love for us all. We are hanging in there, and I can't believe that just one week after being diagnosed I am already almost half way through chemo.


Insurance, Dewey's, and Gmail for Children

These topics have nothing to do with each other, other than their shared dominance of my thoughts today.

The care so far at UC has been great. The people are nice, the nurses and doctors have been great, and Beth's treatment is progressing pretty much like we would have expected.  (The tired stick wasn't explicitly disclosed but is not surprising.)   Everything has moved very quickly over the past week as we focused on getting Beth's diagnosis correct and beginning the right care.

That being in place, I started to wonder how all the money part of this works. (The finance guy is never far beneath the surface...)  I didn't want to get a surprise when the check comes that we'd forgotten to do something for the insurance - kind of like ordering the 'market price' items on the menu for a month.  After several phone calls and a very helpful session with one of Beth's colleagues from the Benefits team at work, I'm beginning to put the pieces together.  Over the next day or so fax machines will be humming as various forms move from place to place, and we will benefit (for the first time) from the various different Powers of Attorney etc. that we put in place several years ago for just this kind of thing.  Hopefully a few hours of investment up front will save us lots of hassles on the back end.

We picked up Dewey's Pizza and met Beth at the hospital for dinner; the kids were unphased by the whole thing, and I'm really glad that a) we've had positive hospital experiences in the past (Beth going in for hand surgery and Margaret for kidney infections, both coming home healthy and happy) and b) we've been talking about how this all works, what they might see or expect etc. over the past few days.  The kids were very glad to see mom, and we replenished the dopamine tanks for everyone in the family with the girls snuggled up with mom in the waiting room talking about the intricacies of her IV pump.  The girls are prepped and ready should we need/want to have them wear masks when they visit - they were pretty keyed up by the idea that the hospital would give them free masks - although hopefully this won't be necessary.

Finally, I caught up on a long-standing to-do item and got Katherine's email account set up on her iPod.  Since the kids are still getting to know all of their friends and teachers at school, I had really wanted to make sure she could use her email on her own if she wanted to share any concerns, etc. with her friends and teachers from China.  She was excited to have email and see who had sent her messages since she last was able to check it (in August), and sent one message.  As fine as they seem, I know that there's stuff percolating in their heads and want to make sure they have whatever outlets they need to express their fears and concerns so that we can help.  (Margaret was happy to get online on the computer and checked her email for the first time since summer as well.)

So far, so good.  Please keep us all in your thoughts.


Wednesday, October 17, 2012

Round 2: Toxins, Dopamine and Technical Issues

Chemo is a poison. The nurses have to put on special gowns and gloves to change the bags. My bathroom in my hospital room is literally a biohazard zone and any visitors cannot use it (there is no sign but be forewarned). There is a special biohazard box in my room to dispose of anything used related to the chemo, and I've been told to expect that my body will remain toxic for 48 hours after I finish the chemo.

I am finding it really ironic that to get well I am being continously injected with poison. The doctors have explained the abnormal cancer cells in my blood and bone marrow are weaker than the normal cells. The chemo effects both but the goal is to wipe out the abnormal cells completely and then give the normal cells time to regenerate.

Today I am starting to see some side effects. My face and next are red (flushing). I've had some chills, a slight headache and I am extremely tired. So far still no fever which is great. My doctor said today if I make it through chemo with no fever I could potentially come home earlier than he told us which would be great news.

All my blood counts remain very low, and the doctors say the transfusions will boost them for a bit but the chemo will continue to push them down. My platelet count (this is what helps your blood clot) was 11 before the transfusion and went up to 17. For perspective a "normal" level is 150. Typically now they do a transfusion to keep your levels above 10. The cut off use to be 20 but they found there was not a big different for patients if this was taken down and apparently there is (and has been for awhile) a national shortage on platelets. So if you are looking at how to help please check out where you can donate platelets or blood in your area! Note there are no photos on this blog for a reason but trust me I have some killer bruises.

My white blood count remains low and is ticking lower (around 2). The white blood cells fight infection so that is why I have to be very careful to not be exposed to germs. The chemo kills the white blood cells and these cannot be easily transfused so we are expecting these to go down to next to nothing.

My red blood count was boosted by my 2 units of blood yesterday, but are still well below normal. The red blood cells carry the oxygen through your body. Both my low levels of red blood cells, or hemoglobin, combined with the chemo (combined with the every 2-4 hour round the clock vital checks, med rounds, etc which are impossible to sleep through) are all making me feel like I have been hit with a tired stick. So if I am posting less it is just because of the extreme fatigue.

We asked today what happens when I get out of the hospital and when we will know if the chemo is working. Sounds like it will be early next week before we get a read on that and then really 3 months post chemo before we know for sure how effective it was. In the interim I was told to expect blood draws 3x/week to check my levels and regular blood and platelet transfusions as needed. If this round of chemo does not work then I get another hospital stay same chemo drug plus another drug.

We have been joking that our health insurance must hate us. With our move back from China we went on new insurance as of Sept 1. It is looking like we are going to be testing the limits of it (and we are wishing we put more money in our Medical Pre-Tax Flexible Spending Account).

Have also realized today that being in the hospital I am going through dopamine withdrawal. Outside work, I am use to having a child snuggled next to me, hopping in my lap, hugging me, or leaning against me while doing homework or eating dinner in a most annoying fashion (so you know I am sick and/or desperate if I missing this!).  Also, after 16 years of marriage am use to getting a good nightly does of  dopamine from sleeping next to Chad. Getting my blood pressure taken, or central line dressing just really is not the same.

The girls and Chad are picking up Dewey's and bringing it the hospital so we can have dinner together tonight. Hoping to fill my dopamine tank and get in a family game.

Sorry for the technical issues making it hard to comment on this blog and with some of the links not working. We think we have gotten all the glitches worked through, but email our Family Technical Director (aka Chad) if anything is still not working. This blog was obviously not a preplanned venture!

We are surprised at how it has traveled and we hope it is helping friends and family stay up to date on what is going on. There have been over 2000 hits so far. While I know many of these are from my anxious parents (Mom and Dad, I am assuming though you are not making more than hourly attempts at updates :)) we know it has traveled far beyond my family.

So all in all going about as well as we could hope for. I am very tired but hanging in there and counting down the days... close to 2 rounds of chemo done, 5 more to go.

The Importance of Being Accessed (with Apologies to Oscar Wilde)

Things at the house are settling into a routine.  This is largely consistent with last night, but I have made some modifications as we go along.  I suspect there will be more in the future.

Here's our schedule:

Step 1 - Homework, Dinner, R&R; Kids get ready for bed.

Step 2 - Fall asleep with one of the kids.

Step 3 - Wake up with one of the kids

Step 4- Frantically look for phone in pocket, bed, check messages, find house phone and look for missed calls.  (This is a new step from yesterday, made easier by keeping my phone on my person at all times.)

Step 5 - Catch up on what I meant to do after the kids went to sleep.  (Work, email, blog post, lunch boxes, dinner dishes, etc.  Tonight thanks to Beth's 'constant motion' technique, I had all the dishes cleaned already during Step 1 but I need to work on faster motion in future.)

Step 6 - Sleep, intermittently interrupted by repetition of Steps 4 & 5, as needed.

Step 7 - Improve fitness level by sincerely, really, seriously planning to get up tomorrow in time to work out, although today I just really need this last hour of snoozing.  I am concerned already that our family will appear to have taken a pledge in which I promise to gain 3 pounds for every one Beth loses.  So far I think I'm on track here.

Step 8 - Walk dog, shower, eat breakfast, make lunches, make breakfast, check texts and email.  Feel guilt related to Steps 4, 5, and 7.

Step 9 - Feed kids, referee minor disagreements, suggest sleeve length based on temperature during Lilly's walk.  Contemplate how hard to push sleeve length recommendation.  Determine if outside temperature is likely to be fatal with prolonged exposure and sleeve length selected by kids.

We call Beth from the car on the way to school and the kids debrief her on all the plans for the day, then I head back to the hospital to see Beth.  Our normal routine should be that I come by in the mornings to see her and meet the doctors on rounds, and also at the end of the day on the way home.  Hopefully we'll also be able to do dinner here with the girls sometimes - that's the plan for tonight.  Thanks to all for the continuing good wishes and support.


Tuesday, October 16, 2012

Round 1: Chemo vs Beth

I am at the end of my first bag of chemo (1 down and 6 more to go). I know I am biased, but am going to call this round in favor of me. I had no fevers, nausea or other side effects (yeah). I am almost giddy with excitement that when this bag is done I get to take a much awaited shower.

Also, positive today was I found something very edible from the hospital menu tonight and was given some good tips on what to steer clear from from my friend, Matt, which is also much appreciated.

Today has felt very busy. Lots of the others on my support team have spent quality time in my room. The Pharmacist has come both days for long discussions because I am taking such a cornecopia of drugs (and also I suspect it is because this is the first time he has filled this chemo drug script and is curious on how I react). The chemo drug I am on is called Cladribine. I have never had a pharmacist come to my room at the hospital and did not know they even did this. Tune in tomorrow for an update on when we will know if it is working. It is on our list to ask my doctor tomorrow am during rounds.

The dietician also came by for a long stay with many questions and advice and good info the program here. I was surprised to learn that this hospital has its own dietician for this unit (!). Learned today that Cincinnati Children's Hospital started a bone marrow transplant unit about 8 years ago and has built the program to be the #3 rankend on in the country. The person who built the program at Children's is now at UC. UC use to be part of the Health Alliance in Cincinnati which limited the participaing hospitals (Christ, Jewish and University) to just one bone marrow unit which was at Jewish. Apparently when the Alliance feel apart UC could get into the bone marrow game and they hired the lead guy from Children's to built this new unit, and he pulled top talent in from across the country. Literally everything started up last month. So between being back from China, and this fantastic new program with a great experienced team, feels like good timing if I were to get luekemia.

Getting back to the dietician I am on my third special diet recommended by doctors in a week, but given she has her master's in this area, and she talked everything with my doctor, am going with her recommendations on what to do and not to do.

A few tips I picked up today are...
- As long as food has been fully cooked and then put in the refrigerator within 2 hours of prep it should last for 7 days.
- Lunch meat is a frequent carrier of bacteria (especially listeria) so avoid it.
- Berries are not on the okay list with a low white blood count. They have a lot of bacteria (which is why they go bad quickly) and are hard to clean.
- Grapes are on the no go list as well (they are covered with lots of mold).

Most of the other restrictions are familiar to me from being pregnant abroad or living in China.
- No soft cheeses.
- Wash all veggies thoroughly (preferrable to cook them first). {Geneva friends, no mention of no fresh salads because of the cats roaming the fields but assume the washing well covers this base :)}
- No sushi.
- Nothing that is not pasteurized.
- Wash the outside of fruits you are peeling (e.g., melons, apples, etc.) before you cut them.
- Fully cook hamburgers.
- For steaks thoroughly cook the outside which is what can come in contact and grow bacteria but you do not have to prepare everything well done.

Thanks again for all the offers to help. Chad and I really appreciate all the support. We are doing okay today. I am very sorry I have not been able to respond to people personally, but please know that we really appreciate each and every supportive note we have received and all the positive thoughts and prayers.

Chad is trying to get links on the blog set up to Hoxworth (blood bank) and Luekemia Lymphoma Society if people want to do a donation to help out the larger cause. We have been really impressed in what we have learned on the advances in cures for luekemia through research. I have also been really thankful for the blood and platelets that I am using. They truly are a life saving gift.

For all inquiring minds, Chad has also put up a link on hairy cell luekemia in case anyone wants to read more about it and you have not already googled or wikipedia'ed it. The last link is one we came across where Land's End does donations to Luekmeia Lymphoma Society for all your purchases through them. I myself just bought winter gear for the girls through them and was bummed we missed the chance. If you have yet to get coats, boats, snowpants, or anything else from them check out this link.

That's it for tonight. Will let you know how Round 2 goes.


Long day and longer night

No one talks about hospital stays, or chemo, as very fun and am finding the two combined to not be an experience I hope to repeat soon.

In general, the days are going are much better than the nights. I am able to stay positive during the day since last week when I found out I was really sick, but at night usually I am very tired, and not feeling great, and that then makes me mentally/emotionally not do as well... last night this was compounded by confusion here at the hospital leading to mulitple attempts at getting an IV line started in my left arm in addtion to the PICC.

My platelet levels are pretty low (leading to lovely things like a huge swollen purple bruise around my PICC) so they wanted to give me an infusion last night. The day nurses and my doctor has said the chemo would go in through one line in the PICC and the second could be used for blood, platelets, antiobiotics, etc. However, by the time the platelets were ready all the staff had shifted over to night. The protocol they wanted to follow was a separate IV in my left arm to make sure if I had an allergic reaction they could tell what it was too. That made sense so the nurse tried (strike 1), she tried again (strike 2) and then she called in the head nurse who "never" misses and at this point we are up to my hand and each try is getting more painful... so when she struck out as well I bursted into tears and begged them to see if there was another option. I also called my oncology friend who had some great options to suggest (i.e., just pause chemo for 20 minutes to let the platelets run or see if a Peds nurse who is use to small veins could try). Luckily the Fellow on call agreed to wait until the morning.

At this point my left arm was throbbing, my body was still getting use to the chemo and was not comfortable and the tears had started... I called Chad on his cell phone, then texted and then on our home phone (a couple times) to try and wake up the dog to wake him but to no avail (click up in the tears). My nurse came in sat on my bed, and said I brought you something, and I knew before she said anything it was something to help sleep which I gladly accepted. I usually don't do much in the way of medicine but after everything else going into my body figured this was the least of my concrens. So my sister, Robin, was the lucky recepient of the very teary called. She made me feel much better, the meds kicked in and I drifted off to sleep until the first night check (adn the 2nd, 3rd, and so on). If you want to be on the list accepting late night teary calls just text me :).

This morning my body is use to the chemo, the day nurses and my doctor were back and everyone agreed the platelets and blood could go through the PICC (yeah). My room was literaly standing room only for rounds this morning. The hospital has a dedicated dietician to this unit she came by for awhile. Because my white blood count cells are so low I am on a strict diet to avoid food born infections. Luckily cookies are not restricted. Thank to everyone at work for the lovely cookie bouquet! It is beautiful and I am sure delicious (looks too good to eat just yet). They kept telling me they want me to eat whatever I can because that will aid in my recovery. I have not lost my appetite, and unexplained weight loss is literally the only hairy cell luekemia symptom, so think I may also be an anamoly and be the only person ever on this chemo to actually gain weight... but really the least of my concerns.

Counting down the hours until I can check off the first bag of chemo being done and then just 6 more to go.

Report from the Home Front

On the Home Front, we had a pretty successful night.  I would attribute this to my parenting skills and leadership, but really it was just that the kids were great.  As Beth shared before, they're both handing everything very well, and Katherine has been super-helpful and considerate.   I think being able to see Beth in the hospital tonight was good for everyone and reassuring to the girls as well.

Katherine had two teeth pulled today at the dentist, and did great - her last baby teeth.  Because of this and (SPOILER ALERT - HIDE THE CHILDREN) because my wallet had a limited assortment of bills, the tooth fairy left her a $20 bill accompanied by a lovely note congratulating her on finishing the tooth fairy process and about how much fun it had been to find her teeth in such a variety of countries.  I had to disguise my handwriting because Margaret got pretty suspicious on her last visit. Hopefully success, but will see tomorrow.  (The $20 will probably ensure they both feign belief in everything until it's just ridiculous...)

Otherwise all is well and I'm doing my best to live up to Beth's standards.  We agreed last night after Beth came downstairs for dinner that it would have been better if she hadn't seen the kitchen, as my "batched" dish washing system really didn't square with her sensibilities.  (Why do just a few at a time, rather than saving until there's a big pile?  Seems like a basic efficient order quantity kind of problem to me, but apparently that's not how you're supposed to do it!)  I worked hard tonight to mimic Beth, remaining in constant motion (even when there was something to read nearby), just because there were things that needed to be done.  Frankly I found it exhausting, but hopefully I'll get used to it!

Looking forward to seeing Beth in the morning at the hospital - thanks to everyone for your support and offers of help.  I promised Beth that I'd take care of myself so I'll head to bed instead of perfecting (or even editing) this...

Monday, October 15, 2012

The Outside View - Part I

In keeping with my strict instructions to take care of myself and not stay up too late, this will be a short posting (at least I plan for it to be).

Beth has done a great job of sharing what it's been like to be at the center of the maelstrom - I have very little to add to what she's said, other than to comment that (unsurprisingly) she's been an absolute hero in my mind - none of this is easy and she's handling it all really well, while at the same time making sure that I have everything I need to know to keep everything moving at home.  I'm alternating between deep appreciation for all her concern and care and a sneaking sense that she's thought I'm a borderline idiot all these years...

The only thing I would add to Beth's account of today would be the interaction with the resident in charge overnight, who came into our room, looked around confusedly and asked "Is Beth here?"  When we pointed Beth out ('hiding in plain sight' by sitting on the bed), he commented "I thought you would be a lot older..."  Apparently hairy cell leukemia typically presents in older men, and while he'd figured out from the chart that 'Man' was not going to be the case, he was still not prepared for Beth's age demographic.  That settled, he turned out to be a nice fellow and reassured us by saying that the consensus among all the residents was that she had the leukemia you'd want to get. (There was apparently a spirited discussion at the coffee cart or something.)

I should add that while there may be some parts of these posts where I point out humorous aspects of the medical system and/or funny things all these people say and do - I genuinely have never been more appreciative of the dedication, intelligence, and passion that so many people in the health professions bring to their jobs.  I mean that in the obvious sense (i.e., thanks for being there when we need you!), but also in the sense that I'm recognizing much more what these jobs require in terms of commitment and dedication.  At some point I'll write a longer and more articulate post about this, but in the meantime hug a doctor if you've got one nearby, and I'll keep telling sort-of funny stories about them.

That's it for now - I'll have a brief post about the home front shortly.






Waiting for chemo to start

A couple of hours ago they put the PICC line in. PICC stands for "Peripherally Inserted Central Cateheter". It is a catheter that is inserted into a large vein in my right arm above my elbow. For my doctor friends, I have the "PowerPICC SOLO" catheter. The catheter looks like a small purple coffee stir. It has 2 "ports" so I can get chemo at the same time I get (or give blood).  They put it in while I was in my room but it was a sterile procedure so Chad had to leave the room. The woman doing it dressed like she was doing surgery and my arm was draped. It is a little uncomfortable but much better than getting blood drawn from veins daily on top of IVs.

Then they did a chest Xray to make sure it was in the right position. They came to the room for the Xray which was convenient but a bit of a comedy of errors getting it all set and positioned. Then I laughed when they asked if I could be pregnant. I realize this is a standard question but when you are doing a procedure to prep someone for chemo you would have hoped it would have been asked earlier in the day (which it was).

My other favorite quotes of the day are...
- "wow, your blood is moving fast are you on blood thinners" by the Lab Tech drawing my blood, unfortunately no blood thinners just no platelets left in my blood.
- "have a great day" by the valet ... very nice of him to say but on the day you start chemo all I could think was hopefully it will be better than I think (which it has been).
- "your room has a great view to see downtown fireworks" ... by someone on the PICC team who wandered in looking for the lady working on me. what is funny about this is that the fireworks downtown in Cincinnati are Labor Day, when the Reds score or win, and at Christmas off the top of Macy's. The first 2 are in the past and I sincerely hope I am not here until Christmas.

I have had a stream of people in and out today. I have learned that I am causing a bit of excitement because "hairy cell luekemia" is so rare many people are interested in it. I have also learned this wing I am in is brand new and just opened about a month ago so many people in the hospital have not been up to it before.

The plan is to start me on a battery of preventive meds (e.g., antibiotics, anti-nausea drugs, etc.). They took more blood today and my numbers are worse than last Friday but better than last Wednesday but is looking like I will get another blood transfusion and platelets tonight.

They have said they are going to hook the chemo meds up to my PICC line about 9 tonight. I am not sure what we are waiting on right now. Given we arrived at 9am has been a long day of waiting. Thank you, Molly and Carol, for the magazines and the rest of the hospital care package :). 

Chad and the girls just stopped by since I am feeling good and not hooked up to everything and it was great to see them. The girls thought the bed which you could adjust up and down was cool, and the flat screen TV in my bedroom and zero entry shower were also crowd pleasers. They dropped off some snacks as well. While I the medical care here at University Hospital is suppose to be excellent the food that cames to your room is not. You can order what you want which is a plus but I could the worst grilled cheese sandwich of my life tonight.

Overall today has been fine....hopefully tomorrow will be the same. Keep your fingers crossed for no fever for me when I start the chemo drugs!

And so it begins....

It's about noon  and I am in my hospital room waiting for the doctor to come up and everything to start. We have spent the morning with the doctor already going through questions and am as ready as I will be for this.

Here are some of the questions I had which I have heard friends/family ask as well.

- Will I loose my hair? Not likely with type of chemo because it is very targeted (good since I have just spent the last 3 years growing it out).

- Will I have a port? No. I will get a picc line into my upper arm and they will use that for as much as possible. Sure it will not be fun to get but is less invasive than a port and am told I can wear my own shirts and pants vs a hospital gown and pants.

- How often will I have blood drawn? Daily (bummer)

- Can I get up to go to the bathroom? Yes, I should be mobile and there is an exercise bike in the break room on the floor I can use on good days. My nurse gave us the tour and she pointed out the halls most frequently roamed by bored patients.

- Will I have a private room? Yes... not only private but an alarm goes off if the door is left open Everyone has private rooms because of the risk of infection. I am on the 8th floor with a view of MLK Ave and the Chipotle and the top of the Great American building.

- Are there any restrictions on what people can send? Nothing fresh please - no fresh flowers are allowed and any home prepared or opened food must go directly to my room (check with Chad first). The address is University Hospital (8 Main), 234 Goodman Avenue, Cincinnati, OH 45219.

- Are there restrictions on visitors? Yes, because of the risk of infection. Chad, however, is allowed to come anytime and can spend the night. Shockingly the fold out bed on the chemo floor was not high on his destination must stays this year. We are thinking for all of us better for him to sleep at home.

- How bad will I feel? Really depends on whether I get a fever and how my body responds. If I get a fever sounds like the answer will be I will feel miserable.

- Does the bed vibrate? I was at Christ Hospital for the blood infusion last week. Sadly no beds that vibrate on their own at University Hospital.

That is all I can think of on questions....

It was really nice to have the weekend at home to get packed and ready and to have time to hang with Chad and the girls. The girls are doing really well with everything. Chad asked them in the car on the way to school how they were feeling and if they had any questions. Margaret paused and said she was worried about her four fun facts she had prepared for school today... no mention of mom on the worry list which is good.

We realize our recent life experiences are predisposing the girls to be calm. Margaret had a 6 night hospital stay in Hong Kong and I had hand surgery in Hong Kong they both know you go to the hospital, get better and come home. We also talked about how they might have to wear masks when they came to see me. To that they replied, "yeah, Vietnam had the best masks. I wonder if they will have ones like that." So the girls right now are totally fine and have been really sweet and good helpers.

Chad and I have gotten me settled into my room. The nurse has taken my vitals and we have done reams of paperwork. Soon they will be here to do the picc line and the real fun will begin. Thanks to everyone for your love, support and prayers.

Sunday, October 14, 2012

The calm before the storm

This weekend have mostly spent in bed resting and getting things "in order" before I check into the hospital. Being an organized mom, this means making sure Margaret's Bday party is booked, party bags are packed (girls and Chad did them and we had brought things back from China), etc.  The girls have been very sweet and come pop in and read with me or play i-touch. We tried a family movie last night. Chad and I thought Ghostbusters or ET would be fun. What we could download was Ghostbusters 2. Very funny people in the movie, but definitely was a lot funnier to watch 30  years ago!!!

I have hugely appreciated the outpouring of support coming from every direction. We feel very lucky that we are back in Cincinnati where we have so many friends and we are so much closer to family. We also have a wonderful nanny, Andrea, who has already helped us so much this summer and I know will keep things running while I am gone.

I really appreciated talking to a good friend, and roommate from college who is a leukemia specialist. I knew she was an oncologist but had totally forgotten she did leukemia all day everyday. When I told her it was hairy cell she was so happy and excited. She confirmed that if you had to have leukemia it was the kind to have. She also confirmed my treatment plan made sense and helped with other questions. Thank you, Tara!

So now I am not really ready but am packed and anxious to just get started. I have never been patient but am trying my best to rest and focus on getting well. For the girls it has been really good that I have been able to be home this weekend. My sister and her family already had tickets to come up this coming weekend so will be great to see them and a great distraction for the girls.

Our appointment is at 9am tomorrow so (either Chad or I) will let you know how day one of chemo goes.. 

How I discovered I had leukemia - Day 3

So disgusting drink, IV line, lots of waiting, CT scan gets done. Then Chad and I went to go early vote. We both had had this idea the night before. I don't know where I will be on Nov 6 and was not going to pass up the chance of getting to cast my ballot. I had not eaten all day so we stopped to pick up food were just getting back in the car when we got the call we need to go straight to UC to the Barrett Center to meet with the leukemia doctor.

My doctor is a very experienced doctor, but new to UC so there was a bunch of confusion at reception since he is new and I had just been added to his schedule. After getting that straightened out we had a long interview with the Fellow and nurse that work with me doctor (while waiting for him to arrive). He came in and asked what we knew. Then he gave us an overview of lymphoma and leukemia and the chemo options. Thanks to a friend in town who is very connected with the Leukemia Society we knew we had a good doctor and sounded like the treatment option he recommended was the consensus way to go. So a little more than 48 hours after I got the first call back from my GP it was fully confirmed I had hairy cell leukemia and needed to start treatment ASAP because I have literally no white blood cells, so no ability to fight infection. The hospital did not have the chemo drug I needed, and the doctors the day before had started me on 2 antibiotics so I had to have a very offensive amount of blood drawn for tests (given how many hours and needles it had taken to get more blood in me just a few nights before), but was sent home for the weekend to rest and get ready.

While the treatment for this disease is effective it is not fun (not that any are). It is given intravenously for 7 days round the clock. I will also likely need more blood and platelet transfusions. The chemo will hopefully kill the bad cells that are clogging up my bone marrow and then I just have to wait for my body to generate new healthy cells. So I was told to expect to be in the hospital for 2-4 weeks.

The other "good news" is that most people do not typically loose their hair with this type of chemo. Would be twisted karma if I do. I have spent the last 3 years growing it out after having it short for several decades before that.... but willing to loose my hair if it means full remission.

So we talked through with the girls that my blood is sick. I need special medicine I can only get in the hospital. It will be like I am on a work trip but they can talk to me more, email and hopefully visit.


How I discovered I had leukemia - Day 2

Chad came and got me from the hospital and by late morning was able to go home. I was wiped out from not having gotten much sleep so just rested all day so I could be ready to hang with Katherine and Margaret when they got home We told them the day before I needed more blood and had to go to the hospital to get it but would be home the next day. They were nonplussed by this (which was good).

That day the nurse from the oncologist called and said they wanted me to get a CT scan on Friday to make sure none of my organs were enlarged or infected and she was going to set that up. While the test itself is not invasive let's just say the liter of "berry smoothie" contrast dye you have to drink before it does not deserve the name berry smoothie.

Later on that same night (about 8:30) the oncologist called. She said pathology reports were starting to come back and there was good news and bad news. The bad new was that I had leukemia. The good news was that it was the "best" kind to get - hairy cell leukemia. It is the most responsive to chemo with a success rate of 80-90%. It is a rare form of leukemia (less than 2% of all new leukemia cases). It is much more common in men than woman (4:1). So against the odds for me to have it... really hoping now the odds are in my favor on treatment. She said her specialty was not leukemia so she was going to refer me to someone else and get me set up with an appointment the next day. 

How I discovered I had leukemia - Day 1

First a random story to start with.... We found my fifth grade journal not long ago when we were unpacking. It made for an amusing family afternoon read but it was clear from an early ago I am not a big journaler... so think of this as a way to get info on how I am doing but be ready for inconsistent posting, run on sentences, misspelled words and missing words (think faster than I can type).

With that background feels like I should start with how I found out I had leukemia. As most of you know, the girls and I (and our dog, Lilly) moved back from China in early June. We moved straight back into our house and I started a new job. We had the temporary furniture shipment arrive first, then the storage shipment the next day, the air shipment a few days later and then finally the sea shipment. Katherine luckily rose to the occasion and loved directing the movers around and was a huge help but it was an exhausting summer. It was six weeks just us before Chad came back for a week visit. He had one more visit and then got back for good about   3 weeks ago. So I had been feeling tired, but was expecting to be tired doing an international move with the kids, and starting a new job, by myself.

I did not work out much this summer (no time). When I did I used the elliptical in our basement. When I finally started running it was really hard and I was very short of breath. I reconnected with my old Cinti running buddies and met one for an early morning run. We were just going to do 2 miles but I could not go 2 minutes without having to stop to catch my breath. He commented though that I was not breathing hard and we both agreed it was good if I went to the doctor.

So this past Tuesday I went in for a check up with my laundry list of annual items plus being tired, short of breath and having more bruises than normal (I am clumsy and have always bruised easily also wrote off this sign this summer). My doctor said I was likely run down and depleted and drew some blood. I left expecting to get blood work back in a week to 10 days, and a diagnosis of take vitamins and suck it up and get back and shape.

The next day at work I had back to back meetings and had lucked into a ticket to see the Reds in the playoffs. I got an email from our nanny about 11 am saying I needed to call my doctor. I saw on my cell she had left a message too. I talked to her and she said I was severely anemic that she did not know how I was standing my red blood cell count was so low and that I needed to see a specialist that afternoon. My first question was did I really need to go that afternoon or could I go the next morning. She asked why and I explained I had back to back meetings followed by tickets to the Reds playoff game. Her long pause told me enough, and I agreed to leave work and get to the specialist in the next hour. Luckily Chad had googled what I told him about my blood work results and cleared his calendar too, offered to drive me and stay with me.

That office stay started with more blood work (a trend that continues) and then led to a bone marrow biopsy (something I would not wish on my worst enemy). The biopsy involves making an incision in your skin in your back above your hip and inserting a needle into your hip bone to extract a piece of bone and bone marrow. The nurse doing the procedure commented my bones were strong and asked if I worked out. When I told him I was a runner he asked if I had done a marathon... ironically enough I said yes I had run one with Leukemia Society Team in Training.

After more time at the oncologist's, she sat down to meet with us and told us they were very concerned. I had about a 1/3 the amount of blood I should have in my system and even lower amounts of platelets (to help clotting). They were sending me to the hospital to be admitted overnight to get a blood and platelet transfusion.

When we left the office all I could think was given the fact all my grandparents and aunts, etc. had died from cancer new I would get that diagnosis one day just thought when it happened I would feel sick, and be much older.

I got to go home for about an hour, pack a bag then Chad, Katherine and Margaret dropped me off at the hospital. After multiple tries to get an IV in (turns out no blood in your veins makes them hard to stick), they called in the IV specialist lady. She luckily was able to get one in. For the next 12 hours I laid in bed and while blood and platelets dripped into me. The were a few  surprises at the hospital. First, was the bed moved every few minutes (to ward off bed sores). A feature I am sure I will appreciate during my upcoming stay but with just one overnight stay where my vitals were getting taken minimum every hour wished there was an off button. Second, was my very dear friends, Carol and Molly, who had called to check on me and who wanted to come to the hospital right away. I told them thank you but I was tired but they decided that is what they would say too but they would want company so they came :). It was very nice to have friends and some extra hugs.

The last "highlight of the night" was my very nice, but extremely chatty elderly roommate. At first her chit chat was nice, once they closed the curtain between us and she kept talking it got to be a pain. At about 11pm when I was sleeping she started up again and my friends, Molly and Carol, were laughing so hard behind the curtain with me that I thought they were going to loose it :). She woke me up in the morning as well with a chipper hello, it was just time in her mind.