Saturday, December 20, 2014

Checking things off the list

It has been a big couple weeks on the medical front getting my surgery done for cancer #2 and bone marrow biopsy for cancer #1.

So my surgery last week "went well". I did not get to talk to the doctor afterwards so do not see him for a few more weeks. What made the biggest impression on me that day was the Anesthesiologist. We have gotten use to the revolving door of doctors, nurses and other health care workers in the hospital,and all the questions. This doctor was one of the most thorough on the questions.

I had to have general anesthesia for the procedures last week. I thought I'd had it a few times but turns out things like getting the port in were just sedation so my experience with general anesthesia dates back to age 5 when I had my tonsils out. The Anesthesiologist was relieved I had had it before but she left no question unasked.

I thought my medical history in the UC system was complete but let's just say a lot was added that day. She would start off with the most extreme conditions in each category and I would confidently say no, no, no... but before she got to the end of every category to my shock (and a bit horror) there was a yes and further explanation.

So it went something like this...
Have you ever had ....
...a heart attack? No
...heart disease? No
...irregular beats or heart murmur? Yes, but no medication

and so on and so on. Until Chad jokingly asked "is there a lemon law on wives?" to which the Anesthesiologist directly and matter-of-factly replied "you should see all the boxes I have not checked."  Thank you, Madame Anesthesiologist.

The pain meds while I was on the IV were great. Let's just say the Schedule II narcotics they sent me home with were less than I needed for the first 24 hours but luckily by the weekend was feeling better, and now feel totally fine.

I met with my doctor this week to talk the results of my bone marrow biopsy. The good news is they could not pick up any cancer which is great news. Last time around it was <5% but just over a year later was up to >80%. The type of leukemia I have is not curable so it will still likely come back at some point but great news they for now can't see it at all in my marrow.

Of course there is never just good news, so the other news from the biopsy is that only 10% of my marrow is "working". (This isn't quite as bad as it sounds - only 60% of most people's is!)  My doctor drew a picture that basically made it look like the rest was empty - chemo wiped it all out. He was surprised my counts were so good with so little functioning marrow but thought it should rebuild over time. Plan is for me to go back in 3 months for labs and then 6 for labs and then another bone marrow biopsy. I will miss my friends at UC Health but will love having this long break!

Glad to have the big procedures and news behind me. Hoping 2015 is a healthy year with little news!! Hope everyone has great holidays.

Sunday, December 7, 2014

Doubling Down

For some things you might say if 1 is good 2 is better. My children would put apps for the iPad, dessert, books, American Girl dolls and electronics all in this camp. With Cancer though, more is definitely not better.

With a suppressed immune system and multiple rounds of chemo and radiation I am at high risk for some time of secondary infection, or cancer. I’ve gone to lots of specialists over the last couple of years to rule out things that have ended up being benign (to “not sure why your oncologist sent you to see me”  benign). I have gotten pretty good about not worrying until there is something to worry about.

Over the last month unfortunately I have something that started out as potentially not a big deal turn into something that is a bit of a bigger deal. Long story short I had a biopsy for cervical cancer a couple weeks ago (after many less invasive tests that all showed we needed to keep testing…). The good news is the abnormal cells are very early stages of cancer. So the plan is they take them out and then they monitor me closely. Hopefully one day of surgery and am sure a few days of not feeling great then back on the path of “normal” life.

I had my 6 month post chemo bone marrow biopsy this past Thursday so that I could clear my schedule for my “new” cancer day of surgery this Wed.  My labs looked okay on Thursday. I am sore but have had worse bone marrow biopsies. So some new news but hopefully it is as easy as they think to handle and will have this behind me.


Otherwise life is good. I had a very fun girls weekend with a bunch of friends from college a few weeks ago. We went to my parents for Thanksgiving and got to see several close friends from high school and college. …. And just because we like to stay busy we are also in the middle of bathroom reno’s. We’ve had a huge soaker tub sitting in our bedroom for several weeks now. Hope to have it in the bathroom and ready for use by the end of this week!! 

Sunday, November 2, 2014

Miracles

No medical miracles at our house...two weeks ago my blood work was real-person normal. As of yesterday they were back down to "Beth normal" so think we are in for a few months of ups and downs. I have a bone marrow biopsy Dec 10 which is the next big milestone.

The real miracle at chez Withers is that the girls rooms have been cleaned!! Katherine is pretty good about cleaning things out but Margaret is atrocious. They have shared a room for the last two years. It is a very large room, but they used the space for all their "treasures". Margaret has not been a good influence on Kath and the way Marg's bed was set up she had an "office" between her bed and the wall (code for pit of magazines, stuffed animals and pillows - fun for her, yes - clean, not on your life!).

Katherine has wanted her own room since we moved back from China 2 1/2 years ago. At first I said she needed to wait until Chad got back. Then there was always another reason until this spring when we decided she actually would sleep alone on the third floor if we let her move up there.

Against my better judgement (on both timing and colors), Chad and Kath started repainting her room about the same time that I re-started chemo in the spring. She selected a color called "snow cone green". A few friends that have seen it have asked if she will be able to sleep with that color on the walls - it is very bright. Fortunately she did not want it on all the walls, so a few have a very pale blue. Katherine's self proclaimed style of "artistic eclectic" definitely comes through in her room design and decor, but it is on the third floor at the very end of the hall, so it is all her.

Katherine measured, and planned, and then measured and planned some more. She has pretty much a whole notebook full of plans. Finally PB Teen had their big "Friends & Family" sale and we pulled the trigger on a dresser and desk for her, and a new bed for Margaret a few weeks ago (Kath got a new bed last year when hers broke, and Margaret had a trundle under hers so while hers broke as well the trundle held it up). Today the new stuff arrived.

Yesterday we prepped by cleaning everything out and moving what we could upstairs. I have been coughing and choking on dust for the last 24 hours. I am not sure how they slept in their rooms! You can see the floor now. You can see the top of their dresser. You can open and close their drawers without clothes getting caught in them. Bags and boxes of "treasures" have been purged to give away. Looking in each of their rooms it is nothing sort of a true miracle!! Now if we can only make this type of clean up happen more than once every 2 years!!

Sunday, October 5, 2014

What's worse hearing you have cancer or being told it is back?

First thing I have to say is that I am sure this is different for everyone. There is a billboard for a cancer center in our area that says "There is no such thing as routine cancer" which I totally agree with.  Within our family if you ask Chad, or me, which was worse you get a different answer.

Chad would say hearing I had cancer was harder. We did not know what to expect. We did not know my doctor. We did not know how I would react. It was all unknown and totally not on the Withers masterplan!

My family history is a who's who of  cancer so I knew I'd get cancer at some point but thought I'd be older and feel worse. The first time I had no time to react. I was thrown into treatment and just had to make it through. For me, hearing the cancer was back with a venegance and I needed to be retreated was much worse than the first time around. It was worse because I knew what to expect.

It is really hard to know how bad you are going to feel, and what you are going to have to go through and to have to do it again without that long of a break. I am far from this point, but I can see why people hit a limit where they decide enough is enough with the chemo.

The next time I get the news my leukemia has come back (because it is a matter of when versus if) the plan is I will be heading to Bethesda to NIH. I will have to stay at NIH a week a month for 8 months. It is an oral drug but the side effects are like chemo so it will not be a fun year going through this treatment. There is the chance for a "cure" with this drug though which makes it feel more worth it than something I know will only work from a year or 2 for me. I won't know until next summer if this is what my next fall will hold for me.

I've been feeling pretty optimistic with my steroid juiced blood work from a few weeks ago and my energy still progressively increasing. I've been feeling so good in fact that  we've booked vacations for the next year :).

Yesterday I had my regular every 2 week blood work done and was a bit of a reminder that there will be ups and downs over the next few months. My counts yesterday were down across the board. My hemoglobin and platelets are still okay. My white blood cells  dropped about 25% from two weeks when they were only half of the low end of the normal range. This could just be my body readjusting to life after steroids but it does not feel great to have a couple weeks of moving down.... we were hoping I could move to lab work every 4 weeks but think I will likely be back in every 2 weeks until we see an up tick. Heavy sigh...


Sunday, September 28, 2014

Test this Week

Chad was in Geneva for work all last week and felt like a big test for me being back at work full time and then having all the home front, children responsibilities as well. Since I get to self grade, I am going to say I did really well.  I felt almost like myself which was huge given it was a pretty busy week at work with a generous mix of both early morning calls and late night calls, the girls had lots of evening activities and we had multiple contractors coming and going.

While I was tired by Friday, I would say I was more working mom tired vs cancer tired.  I was not begging the girls to go to sleep at 7 every night (or any night). Now we did all go to sleep by about 9, except for the nights I had late work calls with people in Asia, but that is par for the course for me.

I also made the girls do a list of what they wanted for breakfast and to pack for snack/lunch for school last Sunday. I do the same thing for dinner all week so I know I have the ingredients. This way there was no waking up moaning they were too tired to tell me what they wanted for breakfast. (Don't worry we sprinkle in spontaneity so everything in our lives is not planned out!!) We were up and ready for school early every day. Poor Margaret was getting to school about 45 minutes before school started but she did not seem to mind. There is some work that can start 30 minutes before school and she was actually happy to be early.

I did have blood work done last week and those results were pretty good as well. They came down a lot as expected post steroids but they were good for me. My immune system was back to about half of normal but good enough they finally let me drop a lot of the meds. After over 4 months on antibiotics (and many other drugs) it  is nice to have my daily pill popping done to just a few "basics".

I go back in about a week for another round of blood work then assuming there is nothing shocking in my results I will get to wait a month before the next round. My bone marrow biopsy is already scheduled for Wed, Dec 10. It will take about a week to get results and then if they are okay I might be able to get my port out.

A sign of how well I am doing was a short family conversation Saturday morning. I was trying really hard to sleep in. Katherine came in and crawled in bed between us about 8am. We heard the dog let us know she had slept in late enough and needed to go out. None of us wanted to get up to let her out. Chad was talking about how tired he was, I whispered to Kath to remind Chad that I had cancer so he really should get up...and what did she do? She burst into laughter and said, "Dad, mom is trying to play the cancer card." So I am feeling good enough that when I remind my family I have cancer I get laughed at!!




Tuesday, September 9, 2014

Bread

While much of the country is going gluten free my family has discovered the wonders of Blue Oven Bread and we are "going gluten".

For those of you not from Cincinnati, or not familiar with this local bakery, it sells its goods at markets around town. The lines are always long - so long it looks like something from the Great Depression or a food ration line. For a while the lines deterred us since there are lots of good local bakeries. Then a few weeks ago Chad came home with a loaf of "Bad Boy" bread and our weekend mornings have forever been changed (or at least they've been changed for now).

So now either Chad, or I, get to Findlay market on weekends about 20 minutes before Blue Oven opens to be at the front of the line. After usually 20-30 minutes (and as many $ later) we can stop to pick up coffee for us and then head home to feast. We have been working our way through what they have to offer. We really like their English muffins, fruit croissants and raisin-pecan bread for breakfast. For lunch, the Bad Boy bread with avocado and other veggies and cheese or ham is a family favorite, as is the Country French bread with aged cheddar for fancy grilled cheese. Turns out all you really need for gourmet sandwiches is some gourmet bread. So if you like good bread and you are in our 'hood on Sundays let us know - we are usually making up fancy sandwiches on really good bread.

I've also been on steroids for 2 weeks trying to beat back my poison ivy. They are working slowly for the poison ivy, but have been great for my aching knees. Luckily I have been doing more running to balance out my bread and steroids consumption.

I'm still getting tired by the end of the week. I am batting zero so far for making it to my Thursday and Friday night plans. I just am too wiped out and have ended up with headaches that have bordered on migraines.

Fatigue and headaches aside, I have been feeling great - really better than I have in a very long time. My numbers are finally starting to sync up with how I am feeling. My lab results this week were literally the best they have been in 4 years. Normal across the board which is a first for my white blood cells and neutrophils since I was diagnosed 2 years ago. While this seems like great news, I haven't entirely ruled out the possibility that they mixed up my results in the lab...  I'll really believe it and celebrate in 2 weeks if my counts are still good once I'm off steroids (and double sure it is my blood and it did not get switched!!). Obviously great news though and we are really excited :).  

Wednesday, August 27, 2014

Acclimmating to the new routine

So far so good with the transition back to work and school. We are all doing well with a bit more of a "normal" schedule except for our dog, Lilly. She had grown accustom to more company during the day and she is a dog who likes to have someone around. Katherine and Margaret think there is an easy solution to this problem. They are lobbying for another dog (named Rufus who is smaller than Lilly when we get her but will end up slightly larger than her - not that they have put any thought into this!). As the one with primary responsibility for feeding and health care for all dependents in our family I am not sold on this plan - I have faith that Lilly can make this transition once again this year!!

School for the girls just started last Tuesday but they have both had yearbook pictures taken, had back to school night, and are in the thick of homework/projects so summer seems like a distant memory already.

Katherine has probably had the biggest change since she started middle school. There have been some exciting positives to the year so far. She is thrilled to have a locker. She is over the moon about getting her own (school issued) iPad air. She seems to be doing well with the homework, changing classes (and clothes in PE) and all that middle school has to offer. Chad and I on the other hand, are not doing as well with the cryptic, mono-syllabic responses to most of our questions that have become her standard responses lately.

Margaret has the same 4th grade teacher that Katherine had which she is very excited about. She already has her first big school assignment due this Friday, a model of a bee. This weekend I was her able assistant while she was hot glue gunning. She kept giving me instructions on how to help using her newly learned bee anatomy. Unfortunately for her telling me to hold the thorax was not as effective as saying hold the round stryofoam ball, or the gold puff ball.

I am enjoying being back at work and getting back into the swing of things. I am still tired. By the end of last week I was wiped out - Thursdays are the killer long days. For Chad work is the same but tired wife may be the big change of late for him, but feels like ramp up of the girls activities, parent paperwork, etc. has been the more noticeable change.

I was back at the doctor on Monday for my regular every other week lab work and check. Everything is about the same...my neutrophils were up a bit but still working to break into the normal ranges across all fronts. This past weekend I did a little work in the yard and ended up with a small patch of poison ivy on my arm on Monday. It has clearly moved into my blood stream because today it is down one side of my neck, on my stomach and both arms. I've started on steroids. Hopefully it will clear up before too long and has given me a good excuse to finish the rest of the yard clean up work with a check.

I'm back at the doctor in two weeks...

Monday, August 18, 2014

Back to work, but not totally back to normal

I started back to work last Wednesday working half days and it felt great to get back to a more normal schedule. I was really excited to be back at work. (Yes, this is what cancer/chemo do to you - they make you really excited to get back to work!)

Now I have had a few signs that I am still not totally back to normal. I just went into work for the mornings last week and it was a pretty quiet week. Wednesday felt great. I came home at lunch time and after I got something to eat, stretched out in bed to watch a webcast for work. Thursday I worked the same schedule but when I came home felt a little tired so I laid down after lunch... 3 hours later I woke up.  This was the not-totally-normal sign number one.

The next big sign came a few days later. We've gotten the girls to make dinner one night a week. Katherine had dinner Saturday. Her "easy biscuit pizza" recipe turned out to be not so easy as we made the sauce from scratch and sauteed the veggies. When Kath made the crust it was equal ratios of whole wheat and white flour (but said to be more generous on the white flour),  1 tsp of brown sugar and buttermilk. I was her sous chef and was pulling out ingredients for her. Everything was looking good until she got to the dough which was the last step before putting them together. Kath mixed up her dough and it was soupy - very not doughy. I told her keep putting in more white flour. We finally got it to form a ball and decided there must have been a typo in the recipe.

Then we tried the pizzas, they were awful. Totally inedible, disgusting, awful like we have not tasted the likes of in I don't know how long. Kath had done a good job (and had learned how to chop an onion and bell pepper, and what a clove of garlic was) and the toppings were good but the crust was disgusting. It was so sweet we could not believe it just had a tsp of sugar.  So the girls had cereal and Chad and I had salad.

The next morning Chad was making french toast and Margaret asked for powdered sugar to go on it. When I went to pull it out of the cupboard with the baking supplies I noticed the full canister of flour - which I thought we'd used the last of the night before - and realized I had given Katherine the canister of powdered sugar for her pizza crusts instead of white flour. We would NOT recommend this substitution.

Now I have been baking since I can remember and this is like forgetting and leaving the refrigerator open or leaving to go someplace without shoes for me! Clue #2 - not totally normal.

I will not go on - I am sure you will see clues of your own that I am not 100%, but am glad to be getting more back into normal activities!!

Monday, August 11, 2014

Just what the doctor ordered

We had a great week in Florida. The beach was wonderful and we had a great time seeing my sister, Molly, and her family...and it turns out that a week laying on the beach is just what I needed. My counts looked great today! My neutrophils finally popped up. They are not normal but are good enough that I can start to do a bit more. They are keeping me on all the medications until we have a trend though. The nurse practitioner at my doctor's office was so excited she was beaming as she raced through the door to the room I was in waiting to meet with her and gave me a huge hug. I think they have been saying next week it will be better for so long they were excited too for things to finally pop up.

There is still a lot I can't do (e.g., no sushi, no lunch meat, no swimming, etc.) but so much more that I can do. Excited to be feeling better and getting better! I also got the okay to start to ease back into work later this week. I am looking forward to getting back into more normal life. I will still need to take breaks and rest but ready to move to the next phase.

I don't go back to my doctor's office for 2 weeks now. It sounds like an eternity based on my frequent flier status/pace from the last several months but I am sure I will adjust.

Wednesday, August 6, 2014

What are the Odds

Chad has taking a liking to calling me his "long tail girl". No, chemo has not left me with a tail. This is a statistics joke (so very understandable if you don't think it is funny!). I have not been in the bell curve but have been out in the "tail" of the curve for...
- the type of leukemia I have disproportionately impacts men (4:1) [I'm a woman]
- median age at diagnosis is now 52 [I was 40]
- median remission duration post cladribine chemo treatment is 10 years [I got a year]

The odds of any of the items above individually is very small since the kind of leukemia I have is very rare to begin with. The odds of all the events above combined are extremely low.

Non-medically I also have a history of being in the "tail". Chad and I got married just over 18 years ago in the DC area. We knew DC in July could be  hot, but we were not planning on a hurricane. As luck, or rather lack thereof, would have it Hurricane Bertha came through on wedding day (just what every young couple dreams of). You know it is bad when your photographer is telling you "well if it stops the colors will be very saturated outside". We kept telling ourselves we will be married at the end of the day and that was all that mattered - but it was wet.

The Deacon that married us knew me well and knew Chad and I wanted the ceremony to be accessible and approachable (since I was Catholic and we were getting married in the Catholic church but Chad and many of our friends and family were not Catholic). Deacon Jake took the whole "keep it approachable" thing maybe further than we thought. He improvised during his homily. He held a poster board with the word "Bertha" on it and commented on how close Bertha was to Beth....and then he crossed out the "r" and "a" to show this. Then he went on to talk about the parallels between me an a hurricane (nice, huh!).  I was very worried about where he was going but his basic point was something along the lines of when I set my mind to something I made it happen. Then he said good luck to Chad.

Now 18 years later we are in FL on the gulf coast and there is another Hurricane Bertha coming through. We were able to walk on the beach this morning and the rest of the family swam in the pool. I realize I will be resting more here than at home because there is nothing I feel like I need to buzz and do so am putting me feet up and chillin' more than the last couple weeks. Regardless of the weather this is looking like it will be a good restful week but hoping it is my last encounter with hurricane Bertha's!!

Tuesday, July 29, 2014

Signs of Progress

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

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

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

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

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

Thursday, July 24, 2014

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

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

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

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

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

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




Tuesday, July 22, 2014

Dodged a bullet...well, almost

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

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

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

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

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

Monday, July 14, 2014

Light up the Night

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

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

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

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

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

Saturday, July 12, 2014

What do I do all day?

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

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

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

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

Monday, July 7, 2014

Candor

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

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

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

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

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

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

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

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

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

Tuesday, July 1, 2014

Health Assessments

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

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

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

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

Saturday, June 28, 2014

Cancer as a Gift

I read an article not long ago that talked about "cancer as a gift". As I read this is what went through my head....
1) Cancer is the WORST gift EVER.
2) I would NEVER give cancer to ANYONE.
3) If it is a gift, can I return it, or at least exchange it for a common cold or even strep?

The article was about how finding out you have cancer reminds you of your mortality and makes you tell the people you care about that you love and you take advantage of opportunities because you know you won't live forever. While true, I would not call cancer a gift...Can you find silver linings? yes...Can you make the best of the situation? yes.... Is it a gift? Hell, no (I am working on learning to mediate but still think once (if) I learn to do it even with a new found zen-ness I will not change this answer!)

I am still feeling better than expected. Mornings are usually pretty good then by early afternoon the slide begins. It is mostly fatigue, weakness and nausea I am battling. I am hoping in the next couple weeks they start to step down my cornucopia of pharmaceutical drugs I have to ingest daily which I think will help rid me of the nausea (versus having me add to the mix!).

My counts yesterday were all down and below normal, but well above where I started chemo so not bad at all for me. Monday will be interesting to see which way they go. If they are up I will be doing a happy dance and will have officially turned a major corner. If they are down on the same trajectory that is fine ... still will be well above transfusion thresholds and will just give it some more time. So am laying low, avoiding germs and hopefully getting better quickly!!




Wednesday, June 25, 2014

When will be know if this treatment worked?

One of the things that stinks about the kind of leukemia I have is it takes literally months to know how well the chemo worked. We know it is working and I'm getting at least a partial response to the ritx/clad from my counts. The chemo will continue to work though for up to  6 months after you get it. Right now the plan is for a bone marrow biopsy mid-Dec. Based on my response so far and last time around we are expecting the results will be good (i.e., less than 1% minimal residual disease - MRD).

Lots of doctors argue that <1% MRD is a complete remission versus a partial remission. Given though I got those results in March 2013 and then in March 2014 my bone marrow biopsy showed "extensive involvement of hairy cells", ~80% of my bone marrow we are weary. We are going to watch my counts (as always). Last time my white blood cells (WBCs) never normalized. If they actually go up this time that would be a good sign. We have also talked to my doctor about doing another bone marrow biopsy next spring/summer to check and see what is going on. If the hairies are back then I should be able to be fast tracked into the NIH moxi study to hopefully zap them.

So we are in a watch and wait game. I need to avoid infections and rebuild my strength. In the hospital you can't move around much so despite my best efforts to do some exercises and roam the halls I have a ways to go to build back my energy (and muscles!). I am back at the doctor Friday, and then Mon and Thurs next week for check ups and will keep you posted.

Monday, June 23, 2014

Hall Passes

The end of the third year we lived in China Margaret got really sick. She had a low grade fever for a few days then it got progressively worse, then she started vomiting. The clinic had done blood work and she clearly had an infection but we could not figure out what kind. After spending all day at the clinic with her getting fluids and IV antibiotics we came home and she was not feeling better, she seemed to be getting worse and my mommy spidey-sense was she needed to get to a hospital.

Luckily P&G had a program called SOS where you could talk to a Western doctor who spoke English and they could let help you decide if you needed to go to another doctor, or country, for treatment. The doctor I spoke with agreed I needed to get her to Hong Kong ASAP. When I asked how to get her across the border with a fever (since they take your temperature and quarantine you if you have one) they said give her meds about 45 minutes before the border. I added the extra put her on the far side of the car and I'll lean in. Our driver speed us to the border and somehow got her across and by the time we reached the hospital her temp was 104 again. 

The doctor and hospital were excellent and they quickly figured out what was causing the infection and once they got her on the right antibiotic she started to respond and get well. She and I still got to spend 6 days in the hospital (in a shared room with another girl and her mom) and we were 3 hours away in another country so needless to say we did not have a lot of visitors. Once she was feeling better we had to wait until she had been fever free for 24 hours so we were passing time starting to go crazy when a nurse told us she could give us a hall pass for 6 hours. Margaret and I looked at each other and were out of there quickly. We hopped in a taxi, went to one of our favorite restaurants, bought some nail polish and books and enjoyed the freedom before returning.

I should have remembered this and asked about a hall pass but I never thought the US would do it with insurance. However, yesterday when a nurse I'd had all week stopped in to say hi and see how I was doing I was saying I really would love to just go outside for a few minutes, to which she replied, "Sure, I can make that happen". I have never changed so quickly. I threw on a t-shirt and shorts. In Hong Kong, we just signed in and out. At UC Hospital, your hall pass is a large florescent square sticker they stick to you with your name, your unit, nurse, phone number, time out.... I guess in case you pass out so they know where to return you to! The time limit was somewhere between 15 minutes and 60 (none of the nurses were quite sure this is clearly a not often used privilege on the bone marrow transplant/hematology/oncology unit). I proudly stuck my sticker on and my sister and I went off to walk around the courtyard and just sit outside for a little bit. It was so nice to get out. I came back ready for a nap after my whopping 10 minute walk and 30 or so minutes outside but it got me through the home stretch.

They let me come home this morning. It is really nice to be back here. I have to go back to my doctor tomorrow morning for labs and an appointment and we are going to take it from there to see if I need to come daily or less frequently. The next 3 weeks are the critical don't get a fever or infection period, and it is a bit of watch and wait. I am assuming I am going to be mostly on quarantine for the next several weeks but as long as that can be at home and I can go for short walks outside that is a okay with me.

Sunday, June 22, 2014

Trapped

The attending doctor and fellow both agreed I should be able to go home today but unfortunately my doctor wants me to give it one more night so am stuck here another day. If I do spike a fever they all agree I'd need to get IV antibiotics started within 2 hours so they want to see one more stable night before I am turned loose.

Hopefully the rest of today and tonight are uneventful and will be home tomorrow...

Recovery

The last of the chemo bag finished running last night about 10pm so the drugs are in. I am exhausted from a week of no more than 3 hours of sleep at a time but otherwise still feeling much better than expected. My counts did not crash this morning they are not only holding but my hemoglobin is up (!?!). I have been forming arguments in my head on why I should be able to go home today. They don't like to discharge on the weekend and not sure if the on call attending will be willing to call my doctor and be a co-conspirator to get me out but you never know if you don't try.

Otherwise for tomorrow, Chad is working his schedule to be able to be here to get me out and home. I am looking forward to a good night sleep in my own bed, being able to go outside, and just getting up and getting a bowl of cereal in the morning versus it being an hour long order then wait ordeal!

If they do let me out either today or tomorrow I am sure I will be back at the clinic daily for labs and checking in but would much prefer that... will keep you posted!

Saturday, June 21, 2014

Chemo Home Stretch

About 8 hours of chemo to go - woohoo! I am still feeling pretty good (knock on wood and everything else). My sister, Robin, came in town yesterday for the weekend and it has been great to see her. She was here this same weekend last time around and remembers too it was Sunday where everything sort of fell apart so hopefully history does not repeat itself....

My counts are still holding but they have taken me off the steroids and the "nadir", or the bottoming out of counts that creates the risk of infection,  from chemo happens between Day 7 and 14 and I am on Day 6 so really feel like we are all holding our breaths to see if this time around is really going to be easier or if the worst is yet to come.

I am definitely spending more time awake this time than last, and reading and am moving around a bit more. So am counting down the hours and hopefully nothing comes up in the next few days and am home sooner versus later!


Friday, June 20, 2014

Chemo Brain

It is back! The foggy mental state of chemo brain has returned. The girls swim meet was cancelled because of storms last night so Chad and the girls came by for a visit. When they were leaving they picked up my small laundry bag to take with them. Unfortunately we made the sad discovery that while I had been changing my own pillowcase (note – always bring your own pillow and pillowcases for prolonged hospital stays) and keeping my pillow off the bed when it was being changed I was throwing my pillowcases in the UC hospital linen basket versus my closet.  As soon as we realized this Chad pronounced the diagnosis = chemo brain.

I asked my nurse last night if there was a lost and found or any hope of recovering them, they aren’t white so they should stick out. She pretty much laughed. She said they empty them down a laundry chute that lands in the basement. I asked the housekeeping guy this morning the same questions and got pretty much the same response. So while I have kept track of all my electronics (and I brought no jewelry or money with me) I am down a few new pillow cases.


So I am on alert forf what else will be affected and am starting to make more notes to myself. Other than the onset of chemo brain I am still feeling pretty good and my counts are hanging. My hemoglobin and neutrophils are up today (!?!). This morning was my last dose of steroids so they think the fall will start tomorrow but I am starting from a good place. Fingers crossed that I will stay fever free and will be home soon!

Thursday, June 19, 2014

My dance partner

All the nurses refer to your IV pole as your dance partner. Mine is noticeably taller than me, has 6 wheels, 3 pumps and is a bit of a monstrosity. The nurse I had when I was admitted thankfully made sure to snag a pole for me without wheels that stick, or other glaring issues. While we have mastered the basic waltz to the bathroom and up and down the halls I still get my toes rolled over occasionally.

Yesterday they added a portable heart and oxygen monitor which has taken it up to tango level when I move around. I am now having to negotiate 7 wires/tubes coming from me and let's just say I am better at getting them untangled than keeping them that way! Everything is okay but the combination of the steroids and chemo are causing a low heart rate (which I already have a low baseline on as a life long runner) and some irregular beats so they are being cautious. I was not sure how sleeping would go with all the extra apparatus. It was no problem until my heart rate would go below the lower limit and they would wake me up for vitals. So not the best night sleep, but have had worse.

Good news is my counts are still holding and today my hemoglobin is actually up slightly which is great because it was getting close to the transfusion limit... so no transfusions today which is good. I am feeling pretty good this morning as well.  I am now at the halfway  point in my chemo and hoping the next few days go as smoothly as the first part of this week. No speculation on when I will get out of here since my counts will likely bottom out next week and my doctor thinks, given my history I will likely have fevers and need IV antibiotics which would keep me where I am for a bit longer. At least for now, so far so good.

Wednesday, June 18, 2014

Confinement

One of the hardest parts for me of these hospital stays is I cannot leave the unit I am on. It 30 rooms so not all that big. I am luckily not on isolation (yet) so I can leave my hermetically sealed / door must remained closed room to wander the halls but there is not much space to wander.

The girls and Chad came to visit last night and Katherine brought me a few more decorations for my room of pottery she painted last week. She hopped right up in bed with me and wanted me to explain everything in the room. Margaret was magnetically drawn to the stack of new magazines a good friend had brought be the day before and plopped on the end of the bed to soak up the latest fashion tips. We hung here for awhile then ventured down the hall to one of the waiting rooms to play cards. It was a nice visit and helped the evening speed by.

So far I am still feeling pretty good, all things considered. By late afternoon I will have 2 bags of chemo behind me and 3 more to go. My counts are down a bit today but still hanging in there. The rituxan clearly had cleared out a lot of cancer and my bone marrow was cranking back up. Yesterday my neutrophils (bacteria fighting part of the white blood cells) more than tripled to levels I have not had since last summer. I was dubious on whether the test results were my blood, but we thought it could have been the chemo pushing the healthy neutrophils out of my bone marrow into my blood stream. They are down a bit today but still crazy high (for me) so that is good and definitely a sign the ritux helped and was starting chemo from a stronger spot.

We are cautiously optimistic but know last time around the first few days went pretty smoothly too. The nadir, or lowest point for counts, is usually around day 10 next week is really the big test. So trying to not go stir crazy in this small space while not picking up any infection!


Tuesday, June 17, 2014

Day 1

Yesterday went very smoothly. Chad helped me get in and settled when they admitted me at 10 am. I realized it was the first time I had walked in through the front door...so had to follow Chad. All my other admittances have been through the ER or cancer center. I have to say it takes an act of will to come in through the front door and "commit" yourself!!

They started chemo at 2:30pm and each bag runs for 24 hours (with a quick break in between so I can get a short shower). The nausea started not long after but the upside to the hospital is easy access to various medications so has been under control.

This morning my counts are holding which is very good and am feeling okay. The parade of people has started and in addition to my nurse, housekeeping, and Bone Marrow Transplant Nurse Practitioner and Fellow coming through OT/PT and the dietician have all been through. We are not speculating on how long I will be in the hospital since last time around the first few days went smoothly as well. I know they will not discharge me on the weekend so Monday would be the earliest I could come up and hopefully no more than a month.

The big frustration of yesterday was finding out 30 minutes after my chemo started that NIH had revised the eligibility criteria for the "moxie" study my doctor and I were very interested in and I would have qualified. My doctor had talked to the doctor at NIH a few weeks ago and then I did not qualify. NIH had called, me last Thursday to say I qualified for the clad/ritux study but said I wanted to do the treatment here since that was possible. So have to think I am meant to be here for some reason for this round, and it is good to know I am "approved" in the NIH system and they are interested in me if this course of treatment does not work, and we will definitely stay in touch with them on how this all goes.

Thanks for the continued positive thoughts, prayers, care packages, meals and incredible outpouring of support! We so appreciate it.

Sunday, June 15, 2014

Denial

Katherine came home from swim team on Thursday with a couple mom's phone numbers and a plan for a sleepover that night with some swim team friends. Thursdays are swim meet nights so they were going to be together at the pool until 10-11pm and then back the next morning for practice at 9am so saying no it was not a good night was easy. I shared this story with a friend, who happens to be a psychiatrist, saying the girls do not treat me like I am sick. She nodded and immediately responded, "denial". I must have had a horrified look on my face because she quickly said that can be good, that most women spend most of pregnancy in denial on how the baby will get out.

The more I've thought about it, the more I think she is absolutely right. On a lot of levels, we are all in a little bit of denial in our household. Reality is no fun to think about. Today has centered around Father's Day and dad activities but I quietly snuck off to pack. Kath and I ran some errands and while we were out she asked about if we would wake them up before left tomorrow morning. We all know it is coming but are all trying to block it out.

I am as ready as I am going to be. The plan is just for five 24 hour bags of chemo (versus 7) last time around. Day 6 was when I spiked the fevers and it all went downhill from there. Fingers crossed I will be in and out much faster than last time around....

Hope everyone has had a Happy Father's Day!

Thursday, June 12, 2014

Good news... the Rituxan is working

Yesterday the results of my blood work were great. My platelets have literally doubled in the last 2 weeks and are in the normal range for the first time since last summer! My hemoglobin and whites count changes were less exciting but they were marginally moving in the right direction.

We feel like the first round of treatment they put me through is working and has cleared out some of the cancer in my bone marrow for the healthy cells. Next week they get the old 1-2 punch with chemo and more rixutan. I am still waiting to hear if I will get chemo 24 hours a day for 5 or 7 days. Either way I signed all the consent forms yesterday to start Monday. The check in process will start at 8am and the hospital will call with my room number Sunday and I go straight there Monday morning.

I am thrilled that my counts are moving the right way and am going into next week much stronger than my first time around with chemo. The mix of medication they have me on is still giving me some trouble (e.g., blurred vision, nausea) but am having more good days than bad this week which is helping mentally get me boosted and ready for the next few weeks. Chad and I are trying to set our expectations low on the hospital stay and are planning for me to be inpatient for a month like last time but everything is crossed that it will actually be faster and I get out in 2 weeks (or once chemo is done).

Thanks so much for the continued support!! Very excited to say that this week things are moving in the right direction.

Monday, June 9, 2014

Quick Update

I was at the doctor Friday and go back again on Wed. As of end of last week, my platelets were up and everything else was the same.... for where I am in treatment this counts as "great" lab results even though in the absolute my counts stink.  

I was talking to one of the nurses Friday and she said most people who get rituxan feel like they have mono (or mono + flu) post it.... which is a good way to describe how I have been feeling.  I finally started to have more good hours than bad over the weekend. Hoping this trend continues so I can start chemo Monday strong .... need to make sure I stay well and don't pick anything up between now and Monday!





Wednesday, June 4, 2014

Home for now...

Sorry for the delay in an update, I've been feeling awful and Chad has been a blur of constant motion between work and getting the kids to year end activities.

They let me come home from the hospital Sat night under the condition I come back to the infusion center every morning first thing for labs, IV antibiotics and a shot to help boost my immune system (specifically my neutrophils), and that I come back immediately if my fever returned. Anyone who has been hospitalized knows it is easier to get in than out and discharge is a process in and of itself. After they said I could leave I had to get another IV med, another shot, then I took a several hour nap. Then finally decided it was time and called Chad to bust me out. The doctor on the floor was having trouble with the system to get prescriptions printing out. I assured him I had all the meds at home and would be back the next morning at 8 and we went home.

Here is what the hospital stay reminded me....
- The staff is great. I had the same nurses I had 18 months ago.
- The food is lousy (and the menu has not changed since I was last a patient!).
- Hospitals are not fun places to be. You go there because you are sick and the meds they give you (at least in my case) make you feel worse while getting you "better".
- There are only 20 rooms on the Bone Marrow Transplant/Hematology unit and I cannot leave the unit once admitted (and if I end up on isolation like last time I can't leave my room). The confinement is not something I enjoy.
- Hospital gowns are not attractive and don't make anyone sick look any better. In my personal opinion they need a pop of color, at a minimum, and overall redesign would be nice (maybe get the look good, feel good going).
- Finally I was reminded of what I need to pack when I get admitted for my planned chemo stay which includes my pillow, Puffs and all my favorite P&G personal care products.

Overall being in the hospital for a few days did not make me excited about going back and made me remember just how bad I felt last time around. Right now the big admit date has been pushed back from this coming Monday to the next to let this infection feeling resolve and my counts rebound (hopefully).

Meanwhile in other Withers news, my parents are still in town through Friday helping us. I was glad to make it home from the hospital for my dad's 76th birthday on Sunday (both our Dad's were born on June 1 - kind of strange coincidence isn't it?!?). I am mostly resting, working on feeling better and rebuilding my strength a bit and avoiding anything that could lead to another infection. My doctor did okay me going to Kath's graduation post my infusion yesterday. I was skeptical of what an elementary school graduation would be like, since neither Chad nor I remember having one until high school. It was so nice though I was  thankful I could be there. The teachers had taken time to write something very personal about each child. They read that "to present" the graduates ending with their names. What they had to say about each child was so nice and it was fun to watch them guess who their teachers were talking about as they sat on the stage in front of everyone.

No other news.... I am home, not feeling great but hopefully the concoction of meds they are giving me will level out and give me a few days of feeling semi-normal before they start the big dog drugs.

Friday, May 30, 2014

More than a normally crazy week...

First, apologies - I'm not who you're here to read.  In addition, while I think that at my best I'm a passable writer, I will make no such claims today.  But, since it's been an interesting week and Beth is unexpectedly computerless, I thought it would be worthwhile to make an effort at an update.

An update on Beth (and her computerless status)- after a good visit with her doctor yesterday (more on that later), Beth wasn't feeling physically as good as she was mentally.  She'd felt more tired than normal all day and been running a consistently low-grade fever.  This isn't too atypical after the rituximab, so we weren't too concerned and Beth went to take a nap when we got home.  Flash forward a couple of hours - as I'm getting the kids ready for bed, Beth checks her temp again and it's jumped to 101.  With her white and ANC counts where they are, that's not a great sign, and as we expected the hemonc on-call wanted her to come into the ER.  We told the girls that Mom was going to the hospital after they fell asleep and then they went to pack.  We thought it was important that they not be surprised if Beth wasn't there in the morning, but needless to say, it didn't smooth the bedtime process out much.

They wanted to keep Beth overnight for observation and started her on IV antibiotics while doing blood cultures to see what was up (those take 48 hours, but the antibiotics start immediately - if nothing cultures and it turns out to be viral, they can discontinue, but with her immune system they don't take any chances).  Today Beth was doing pretty well, but her fever started to pick up again toward the end of the day (about 20 minutes before they were planning to discharge her) and they are going to hold her another night.  If they keep her longer we'll need to drop off her kindle charger and the computer, but we'd much prefer that she get better and come home.

Net, Beth is in the hospital, doing as well as can be expected but is anxious to get home, which hopefully will be late tomorrow.  This will make logistics complex, as we also have a family volunteer commitment in the morning (me and the kids), a piano try-out and recital, a softball game, and a party to go to; Margaret is at another birthday party tonight.  Hopefully Beth's discharge is conveniently scheduled, but based on prior experience I have no such expectations!

On the longer term front, we confirmed the plan for the next phase.  We have another round of blood tests on Monday; presuming those are stable or improving vs. last week, that would indicate that the rituximab may have done some good in clearing out her marrow and that it is working to repopulate Beth's bloodstream.  If that's the case, then we'll give it another week to keep doing that before we go back to the hospital for cladribine (7 days inpatient plus however long it takes to get rid of neutropenic fevers and infections - we're anticipating 3 weeks, optimistically).  If blood work isn't doing so hot, we might accelerate to as early as Wednesday, so that Beth can be there for the end of school festivities on Tuesday.  We'll do it here in Cincinnati (vs. NIH) so that Beth can be closer to family.  While treatment at NIH would allow the results of her treatment to be used as a data point in identifying treatment options, the actual treatment plan would be identical, and from a patient standpoint neither of us thinks it makes sense to have Beth potentially away from her support system here for that long (particularly since the follow-up rituximab treatments might also need to be there).  So - there's a plan!

Having Beth in the hospital, even temporarily, definitely makes the next phase feel less abstract.  I'm sure we're going to manage everything, there will be a lot of adjustments to Beth being gone that I probably haven't internalized/recalled yet.  (She's the planner, for example.  I just go where I'm told!)  I'll close it here, but thanks for reading and for all the love and support that people have shown - knowing how many people are in our corner makes a big difference.    

Wednesday, May 28, 2014

A year older

Last week I officially turned the big 4-2. I really love my birthday and after I was first diagnosed with leukemia decided every birthday was worth celebrating. This one was a bit more on the chill side (may have to have a big bash for my half birthday) but thank you to everyone for all the birthday wishes and treats!

My parents arrived on my birthday for a couple weeks to help which was the big gift. They came ready to jump into kids activities and were whisked off to Margaret's softball game while Kath and I read and rested up for cake. Chad was about to cut the cake without candles and singing and I put the hold on that because I really needed my wish this year!

We pulled out candles and had no where near 42, so Chad and the girls went with the sum of the digits, 6 candles. The girls thought it would be perfect if Chad lit two and they both got to light two. Sounded okay since they are 9 and 11. Once they were handed the matches it became clear they had not never held them before. Margaret was holding hers straight up and down so the first thing I blew out was the match before it burned her finger. Chad quickly took over and happy to say we did not end up with a house fire (wish one of the night granted!).

It was also a nice gift to have an extra day between rounds of treatments. With the holiday my treatment was yesterday vs Monday. Yesterday was like the others and am glad it was the last of that round. There are small signs in my blood work the rituxan is working which is great, but the drug had destroyed most of the red blood cells I got in the transfusion last week and my white blood cells and everything that fights infections are still very low. The good news was my platelets were up (sometimes a leading indicator of more good news to come) and also the count of the starter red blood cells was up (my reticulocytes) were higher than normal so my bone marrow is working to try and produce more red blood cells and catch me up also a good sign.

We were able to move up my doctor appointment to tomorrow to align on the chemo plan so will let you know what we decide.

Tuesday, May 20, 2014

Food is Love

Chad and I both consider ourselves from the South. Not long ago we were talking about this with the girls and their response was "Hold on! You are both from Virginia - thats not in the South! Thats a Mid-Atlantic state." While their geography was right, we seized the teachable moment to talk about the Civil War and the Mason-Dixon line, and where their grand-mothers grew up. Chad's mom grew up in Jackson, Mississippi, and my mother grew up in Charleston, South Carolina, and Knoxville, Tennessee. So kind of similar to "mother tongue" we feel more Southern in many ways even though Virginia is in the Northern part of the South. 

If our mothers are very Southern, their mothers were even more so, never living outside the "deep South". When Chad and I got married only our maternal grandmothers were still alive and they were both in their early 90s... Anyway, we soon realized our grandmothers had more in common than age. They both grew up on dairy farms and both had passed along to our mothers (who in turn passed along to us) the idea that food is love

Breakfast at our both of our grandmothers always included biscuits and sausage (yes, that is right - included - but there was always more). I was glad when we went to my grandmother's that Chad knew that it was polite to not only eat some of everything, but to over-eat the biscuits and sausage in particular. 

We so appreciate the meals that people have already made for us and those people are planning to bring. To us it is a huge sign of your love and support for us. It will also practically be a big help.  I am the one that usually does the cooking and having been so sick have not felt like doing much of anything, much less cooking. Huge thank you for this!!

As for my weekly health update, yesterday I got my weekly treatment of rituxan plus a unit of blood. My hemoglobin was about the same as last Wednesday which was good news. We were expecting it to fall so I was technically above the limit where I had to get blood but still 25-50% below normal range so they gave me blood to help give me a little boost of energy. It has definitely helped and I can walk a flight of stairs without needing a rest at the top. My platelets were also up slightly which was good, but my neutrophils dropped by 50% again so they are getting to be near non-existent. My already bad immune system has gone from bad to worse.

Unfortunately the rituxan flu like symptoms are the same. The first week by Friday I did not feel nauseous. Last week it took until Sunday... hopefully I get at least a day off before my last round! 


June 2 is when I tentatively will meet with my doctor to agree on chemo course of action. I was asking the nurses in the infusion room if since my counts had dropped with ritux would they wait until they rebounded to start chemo. They said I was the only person they had ever seen it have that effect on (great), but they thought no chemo would start right away. Right now Chad and I are still leaning towards inpatient and another round of cladribine to get it done with versus stretching chemo out over 6 months. This one month of every week feeling like crap and getting a few days of feeling okay and starting over has not been fun.
  If we do in-patient it will likely start the day after Katherine’s 5th grade graduation so we’ll have a day to celebrate that milestone before going into the next phase…

Thursday, May 15, 2014

How I am Feeling....

I really prefer to write about other things going on versus how I am feeling. Thinking too long on how I feel these days is too depressing .

The short answer to how I feel is a I feel lousy, and it is only going to get worse. Chemo is coming. The drug I am getting every Monday is leaving me feeling like I have a bad case of the flu (chills, headache, achy, tired, nauseous, etc.). This week I learned each week would be getting progressively worse. This is apparently a "common" side effect of rituxan.

On top of that I am also having the rare side effects of suppressed counts. I was back at the doctor all morning yesterday for some tests, fluids and meds. The tests were to see if rituxan had induced an autoimmune disease causing the premature breakdown of red blood cells or if the drug was doing it on its own. It has come back that is is the drug causing the breakdown. So what they do for that is treat the symptom which means blood transfusions will be starting up for me Friday or Monday. My hemoglobin was down again yesterday from Monday to right at the transfusion level yesterday. They debated giving me a transfusion but decided to wait in case they needed more tests on my blood.

With rituxan breaking down my red blood cells it is causing my hemoglobin (which carries oxygen through your body) to drop significantly. This makes me even more weak and tired. Transfusions should help some but last time around I was getting transfused every 2-3 days and it takes several hours so it helps but is also a bit of a tiring process.

I also got the word yesterday I needed to stop work for awhile. I am feeling awful and is looking like just Mondays at the doctor are turning into 2-3 day a week visits for tests, fluids, other IV meds and as soon for transfusions.

On the NIH front, things are still rambling along. My doctor's office FedEx'ed NIH slides of my bone marrow biopsy yesterday that they requested and now the hope is to have their final reco back by last week in May when I finish the last course of this round of rituxan. We are mentally planning that what will be next will be a stay at UC for chemo but we'll see.

The girls continue to be very resilient to my lack of energy and not feeling good. They are taking on more chores to help (e.g., more help with dinner prep, clean up). So they are actually excited because they are getting a boost in allowance to go with it. Right now they get $1/week for the basic chores they do now (e.g., making their beds, putting away close, feeding dog). Katherine told me the other day "you are making me rich!" when I gave her allowance for the week. They are thrilled that it will be doubling. (Please do not let your children let them know what they get because we know we are way below market rates!!). So the girls are enjoying all the end of school year activities and they are very excited that their allowance is getting a boost..... so always an upside to everything.

Tuesday, May 13, 2014

Distractions

The first distraction of our last week/weekend was one we had been expecting - tired Katherine. End of last week was the annual 5th grade overnight trip to Dearborn, MI, to the Henry Ford Museum and Greenfield Village (colonial working village). Katherine was SOO excited, she had been looking forward to the trip for awhile and it did not disappoint. She had a great time. However, leaving at 6:45 from school on Thursday, returning to school at 11pm on Friday and sleeping in a suite Thursday night with 7 girls and a teacher left her wicked tired. Unfortunately, sleep deprived Katherine, to put it mildly, is no fun to be around.

We were planning to sleep in on Saturday morning to help temper the mood of the aforementioned under rested pre-teen, however, Mother Nature had other plans. A huge dead tree that we thought was on our neighbor's property, and they thought was on ours, feel on our house about 6:30 am Saturday morning. Yes, you read that correctly, a tree fell on our house Saturday. (Just what we needed!!) We were lucky because it actually more fell into the back versus on the roof so it left us with broken screens, windows and deck furniture. It was the sunroom it fell into which is where the girls play a lot so we are glad it happened when no one was out there. The other upside of the tree disaster was Chad finally got to buy a chain saw (once we pushed the tree out of the driveway and cleared the glass). Chad got his fill of chainsawing, I was on glass clean up duty and it is more or less okay, and contractors have been scheduled for the windows, screens, house damage, etc.

The other big event in our house this week is a new sitter starts. Our current sitter graduates from Xavier this weekend and gets her MBA and is moving. The new sitter is a Xavier nursing student but also a bit of transition.

So my cancer has really taken a backseat to other events lately. I had rituxan treatment number 2 yesterday. It was a few hours faster this time since they went ahead and gave me upfront all the meds they ended up giving me last week to counter the allergic reaction. Let's just say with three Benadryls plus the equivalent dosage of an anti-nausea drug that makes you sleepy I was out for most of the day (and am still pretty groggy today!).

The only other news from yesterday was my counts were down vs up which is what was suppose to happen with this drug they are giving me. My hemoglobin dropped a full point (which makes me that much more tired with even less oxygen in my system). If it does the same thing next week I will hit the transfusion limit and that will start up again. Right now the plan is 2 more weeks of rituxan then in patient from claidribine + more rituxan but will see if my counts next week result in a change of plans.

Huge thank you to Molly for taking me for my treatment yesterday and hanging with me, and Jack for doing the second shift and getting me home, and to Sofie for a wonderful dinner for our family! We are so thankful to have so much support as we are going through this.

Tuesday, May 6, 2014

Sleeping beauty awakens!!

I feel like I have been under some crazy sleep spell. We got to the doctor yesterday at 9 and it was about 4 when we got home but it just felt like a few hours to me. When we got home I made a beeline for bed where I conked out until 11:30 when I woke up briefly for water and meds, then went right back to sleep until morning. Chad roused me with the girls for some toast but all I wanted to do was go back to sleep.

Yesterday when we got to the doctor I was giddy excited to get things going. They "accessed" the port cleaning the skin on top of it and sticking a needle in it that they then hooked up to draw blood and give me my various drugs. They started with a round of pre-meds to help alleviate the allergic reactions (2 benadryl and 3 other drugs). It started off fine. I was pleasantly surprised by the great collection of People magazines in the infusion room and started catching up on the latest fashions and gossip. After about 45 minutes though I started to not feel right - heart was fluttering, chest pain, headache, nausea - it got badly quickly. They stopped the ritxan, gave me more benadryl and lorazepam (I am allergic to the good anti-nausea drugs) and pretty much knocked me out for the rest day/most of today so far.

Today when I have been awake have felt like I have the flu - dizzy, headache, weak, nauseous, and slight fever (but below what would send me to the doctor). I am sleeping and hoping tomorrow this will have all passed.

My counts are not doing well so hopefully the rituxan helps. Yesterday they were down a lot across the board....still better than when I was first diagnosed but otherwise looking pretty grim....curious to see if my counts will be up next Monday or down. If sleep truly is curative I am doing my part on that front!
 
  Platelets Hemoglobin White Blood Cells Neutrophils
Normal Range  140-400 11.7-15.5 3.8-10.8 1500-7800

10/10/2012 - diagnosed
11 6.1 2.7 100
11/12/12 - left hospital  31 10.5 1.1 668
11/15/2012 50 11.0 0.9 420
11/19/2012 66 10.8 0.9 510
12/17/2012 106 12.2 2.4 1783
1/24/2014 122 12.4 1.8 1082
3/11/2014 104 11.2 1.2 592
3/26/2014 102 11.8 1.1 541
4/7/2014 84 11.6 1.3 504
4/14/2014 94 11.2 1.2 466
4/21/2014 95 11.6 1.3 610
4/30/2014 81 10.8 0.9 289
5/6/2014 62 10.3 0.8 231




Monday, May 5, 2014

Starting the next marathon..

This past weekend Cincinnati held the 'Flying Pig' marathon.  We didn't attend (Beth was recuperating from her port surgery on Thursday), but we were excited to start this morning on our own challenge - the beginning of chemo again for Beth.  This round is starting with four weeks of rituximab, which is intended to knock the leukemia back a bit before the next course; this should allow her blood counts to recover a bit as well, which will be a good thing.  The doctor at NIH strongly believed that Beth's adverse reaction to cladribine was likely to be related to her being transfusion-dependent when she started, so having better counts should give us more confidence in either cladribine or pentostatin as the next step.

We had been warned about a fairly high rate of allergic reactions, including some cardiac effects - cardiac arrest is noted as a possible side effect, but I think it more typically results in atrial fibrulation (elevated heart rate, etc.)  Given Beth's strong reactions to most drugs we came today prepared for the worst, and they planned to infuse her over 4.5 hours with breaks as needed - vs. as little as 90 minutes normally.  After giving her several pre-chemo drugs to reduce the risk of an allergic reaction, they started the rituximab.  After about 40 minutes, Beth started having intense nausea, etc., but this resolved relatively quickly after they stopped the rituximab and gave her some lorazepam, which is the only good anti-nausea medicine she isn't allergic to.  The chief side effect of the lorazepam is fatigue, so Beth drowsed her way through the rest of the treatment, which went off without further incident.  Beth is clearly on the 'gentle' pace today - we've had lots of other people go through the infusion room for chemo while we've been here.  Given the result today, though, I think that at next week's treatment they'll just start her off with the anti-nausea meds and it will likely go faster.

On the NIH front, we've not seen any detailed results (it's not clear exactly when that will happen), but our doctor spoke to the doctor there and it sounds like Beth is not a candidate for the monotuximab clinical trial we were considering; that trial requires at least one failure of another frontline therapy (either pentostatin or cladribine), and while Beth's remission was pretty unsatisfying (from a duration standpoint, anyway), it apparently wasn't short enough to count as an actual failure.  The good part of this is that it takes out some of the uncertainty about where we go next - we'll clearly be at UC and going with one of the two conventional therapies for now.

No other news today - we continue to be touched by the care and concern of so many people and are deeply appreciative of all the offers of help, etc.