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.