Thursday, September 29, 2016

Doctors Appointments

The last two home breaks I have had to take Katt to the doctor. The girls’ doctor’s office reminder call always asks that you arrive 15 minutes before your scheduled appointment. So we dutifully comply. While we were on time, both times we did not see a doctor for over an hour past our scheduled appointment times.

I find it incredibly disrespectful, not to mention, inefficient to have delays that long. I know they cannot always predict how long they need with people, and they have to work people in, but there has to be a better solution. The airlines text, and email, you if there is a delay. Restaurants text you when your table is ready. Why can’t there be something like this for doctors’ appointments?

Much to Katt’s chagrin, I expressed my displeasure to the two different Pediatricians on the delays. Then I got a survey in the mail from our last visit that asked if we saw a doctor within 15 minutes of our scheduled appointment time. They have gotten lots of feedback from me lately... our last appointment was mid-morning and it took 1 ½ to see a doctor for a potential ear infection which is just crazy.

All that back story leads up to Tuesday this week. The girls had their annual physicals. As we got out of the car, Katt jokingly said she wondered if I had gotten on a list for my complaints and if it would be faster today. We checked in, and then settled in to wait. Katt pulled out her algebra homework and then 2 minutes later we got called back. Katt looked at me with an “I told you so” glimmer in her eye.

They did vitals, we started all the sports physical / school physical paperwork. Then they said the doctor was running a little behind so they went ahead and did the flu shots… basically they kept it moving. The last two times we have not seen the girls doctor, but two other doctors in the practice.

We ended up being at the doctor for two hours, but they kept it moving along and we had contact with health care professionals for a lot of it. The annual exams are just long, and the girls doctor handled it much better. I am glad she did because was thinking of switching, but at the same time hating the thought of having to switch and get established somewhere else since it is such a pain.

It was also sealed at this fateful appointment that we will not be parents of the year. Katt has had a nagging cough, which I assumed was a “productive post viral cough” like I have had. Turns out, unlike me, Katt’s chest was not clear and she has walking pneumonia. Otherwise everyone is healthy.

I had a bit of an unexpected trip to the ER Monday. It turned out to be mild dehydration and acid reflux. With cancer and tightness in my chest I was on the fast track. My labs all looked great, and after fluids and a “GI cocktail” I felt tons better. I have been taking it easier since Monday and my labs looked good again yesterday.

I am very excited that I am down to one last round (Oct 11-20), and then looking forward to a year plus of feeling good!! 

Friday, September 23, 2016

My Negotiated Departure

I made it home yesterday. I felt a bit like an inmate, and my lawyer.

My counts yesterday morning were not the best across the board. My creatinine was up to 1.01, which we thought there were other factors that explained this. My platelets were up to which is a contra-indication for HUS. However, before I left yesterday my doctor wanted an analysis of my schistocytes, or broken red blood cells, before I could leave.

This is the infamous test from last time that they needed back before I could leave. It was suppose to take an hour and ended up taking more like 2 days. I reminded my doctor of this from last time, and he said the person who did the test was out that day, he'd follow-up with him directly. This was about 9 am.

On morning rounds, I got my doctor to okay pulling my PICC line which was a great first step. It is the long lead item to leave NIH. Once the PICC is pulled you have to lie perfectly still for 30 minutes. I will push boundaries sometimes, but I am very conservative on anything to do with a central line to my heart.

By 10:30, the PICC was out, my parents and sister had arrived and still no test results.

I'd told my doctor, and the team rounding, that I needed to leave by about 11 am to catch my flight. At 10:45 I called my doctor, and the results still were not back but he said he would get the discharge orders in and to keep my cell phone on.

I made it home last night with no call from NIH, and no results in email, or online yet. I feel like I usually day the first day home which is mostly exhausted, and very glad to be home.

My sister, was commenting, how strictly my activity was monitored in the hospital, and then you are released and on your own to get to the airport and make it home. It is quite a dichotomy.

I am glad I pushed the pace on the activities to get me home. Right now the plan is a couple weeks of rest and recovery at home, and then I return to NIH for one last cycle of treatment Oct 11, and then a few weeks later my last trip to NIH for awhile for final treatment testing.

Tuesday, September 20, 2016

How do you know if you are happy?

I have a friend who is a few years older who has a lot in flux in her life right now - job change, marriage challenges, and issues with her children. As she was telling me about everything that is going on with her the other day, I said we were too old to be unhappy. If something was making her unhappy, my advice was to make changes, and simplify to make her happier. She asked me, "how do I know if I am happy?".

Her question hit me. I know when I am happy, and when I am not, but had never had to put it into words how to tell if you are happy. For me, I know I am happy when I am not stressed, or angry. I am happy when I am around people that make me feel good, and laugh. I am happy when I have a new, exhilarating experience, and when I achieve a goal I have been working towards.

I mentioned this conversation to Chad, and Katt, when they called me on the way home from Katt's swim practice the other night. They both immediately commented on how (obviously) happiness is relative, which had not occurred to me. Katt (my 13 year old) jumped into a description of a study of happiness of African American members of the US Army during World War II that were from the North versus the South. They found that those from the South were happier because of the treatment in the Army versus lack of civil rights of their peers.

Chad went on to share studies he had read about that showed poor countries that were universally poor had relatively high levels of happiness. Countries with broad wealth distribution tended to be much less happy.

I don't know how you measure happiness in these studies. If I think of happiness on a relative basis I tend to think of it versus other points in my life.

Oddly enough with everything we have had going on the last several months, Chad and I have talked several times how happy we are.

Our girls are thriving in school, and have very nice friends. You can tell they are happy by their unrestrained smiles, and laughter, that comes from deep within them.

While we have enough space in our house for us all to have our own space, in the evening, and on weekends, more often then not we are all together piled up reading, playing games or watching a show.

I have days where I physically don't feel good, but I have friends who come to visit me, or text, call or email to check up on me. I have a very supportive family and I have a lot to look forward to. I am very content with my life, and am very happy.

I am a very goal oriented person. If you ask me what I want for my children when they grow up, odds are I would say I want them to be happy. It is funny to me, what I want most for my children is something you can't measure quantitatively, and only they can judge if they achieve it.

Life at NIH is still going well. My labs were good again today, although my platelets were down a bit and my creatinine up to 0.89. Tomorrow mornings labs will be a big determinant if I am on track to leave on Thursday, or if kidney issues are back. I have taken it easy today. I am not stressed, and hopefully will be home in 48 hours.

Sunday, September 18, 2016

Still Balancing

Overall, I am doing better than I think anyone expected me to be doing so far. I have 2 moxe treatments under my belt. My creatinine is holding at around 0.85. Everything else is looking pretty good in my labs. 

I feel like I am walking a fine, blurry, and shifting line on what I need to be doing on activity level and fluids. 

The biggest challenge is striking the balance between being inactive enough I do not trigger HUS, and kidney issues, but not being so inactive that I develop a blood clot. Thanks to Netflix and Hulu, and several good books, the time lying in a hospital bed is going by faster than I would have thought.

My doctor has recommended to not stand for more than 15-30 minutes at a time. I can also only sit up for no more than 4 hours at a time. I have to lie prone to make sure sufficient blood is going to my heart. My daily labs this cycle have doubled and they are proactively checking to ensure there are no issues with my kidneys, or blood clots. 

My blood pressure has been low again, so my fluid intact has been increased. We are still struggling to find that just right amount. We started out this cycle at 6L / day and now are at 7-9L / day.

I've had a few people ask if this will be the last cycle of treatment. I won't know until end of next week. If I make it through this cycle without developing Stage 3 HUS I will likely come back for a 6th cycle. Right now I am focused on getting through the next few days for an on time departure home on Thursday.

Thursday, September 15, 2016

My Goal is to be “Unremarkable”

I’m back. I’m not happy about it. I’m not excited about it. But I’m here.

Yesterday I had my usual first day battery of testing and I met with my doctor. Since I had just been here last week, as he sat down he said, “I’m not sure what else there is to talk about.” I asked about the results of my MRI from last week.  The research nurse pulled them up and they said my liver and spleen looked “unremarkable”. I’ve decided I’d like that to be the theme for the week --- lots of unremarkable test results.

I gave, what seemed like, a few pints of blood this morning for tests. They are going to be very vigilant, and proactive, watching me.

The only thing a bit off today was my cholesterol. It was way up from when I started treatment. I thought maybe this had to do with my forced inactivity (which can’t be helping it). My doctor this morning was not surprised by that at all. He said the cancer I have typically binds to the bad type of cholesterol and as it gets cleared out, the cholesterol starts to get released in the blood. He was not worried about this so I’m not either (but had oatmeal for breakfast, and salads for lunch and dinner!!).

My creatinine was 1.01 yesterday, but this morning was down to 0.90. We are all going to be laser focused on this test to watch for early signs of HUS. I have been taking it easy, but can’t take it so easy I end up with blood clots. I have a scan tomorrow morning to check my right arm for clots. 

When they put the IV in yesterday it is the first time I remember screaming during a procedure maybe ever. The nurse inserting the IV (which is all she does and I’ve had her before and she is good), thought I might have had a nerve right on top of the vein. My doctor wants to rule out it having gone through a clot, which apparently is also very painful. My doctor is good, but I have my money on the nurse’s theory on this one on how it felt.

I had my first round of moxe today and I am very happy to say that today was completely unremarkable. I slept a lot, watched some “Good Wife” and read. Hoping for lots of boring days, and posts over the next couple of weeks!

Friday, September 9, 2016

Not the results I wanted...

I had a full week of testing, and am back home. They rushed all the results so we have prelim results much faster than I have ever gotten them back.

Everything looked good except my bone marrow biopsy which showed 5-10% of the marrow is still cancerous. When I started this protocol my bone marrow was 75-80% cancerous, so good improvement but not where we wanted it to be at the end of treatment. I meet the definition of a "Complete Remission (CR) with Minimal Residual Disease (MRD)" versus a Partial Response (PR), which is I am told is good, but I was hoping for a great outcome.

We've agreed with my doctor that I am going to fly back next week for another round of treatment. I will not go out on pass, and will likely be tethered to my floor (or if I am lucky the clinical center). We are all a lot more comfortable given my labs this week that showed my creatinine down to 0.97, and my hemoglobin and platelets back up. Also, knowing that if I stop now I will likely be back in treatment again in 12-18 months makes the decision easier to go ahead with another round to get a longer remission.

We are not really psyched up about me leaving again in a few days, but I am very glad they let me come home for the weekend.  We are comfortable that by actively managing my fluids and activity level, and proactively watching for any signs of HUS, we will keep it at bay (or at least at reversable levels) in this round of treatment.

Monday, September 5, 2016

Tough Decision

Friday I got an email from my doctor saying, essentially, the "powers that be" at NIH, and the drug company sponsoring the trial were all in agreement that I may be retreated with the big caveats below....

"as long as you understand there is a significant risk of HUS at a higher level, and that although it has always been reversible in the past in our HCL (hairy cell leukemia) patients, there is no guarantee it will be.... Best wishes"

If you goggle HUS, we will see some of the complications (that word sounds so polite, and benign), include coma, stroke, kidney failure and heart problem - all of which sound very bad to me! With my google search having gotten my blood pressure up, I called my doctor to understand what risks he saw, and what his recommendation was, which was noticeably absent in his email.

My doctor was tied up in meetings Friday, but he kindly gave us a time on Saturday that we could talk. Chad and I spent close to an hour on the phone with him. He talked through a lot of the history of the trial, and case details of people who had developed HUS, or stopped treatment early over the past ~15 years of history across Phase 0-3 trials and the duration of their remissions following treatment.

No one who has developed HUS, in Phase 3 of this trial, has continued treatment. I was also the first person to get HUS in cycle 4. So there is no clear precedent. Everyone in the past who got HUS broke the threshold for Stage 3. I came very close to that line, but never crossed it so I was officially Stage 2. They all developed HUS earlier in the treatment as well.

We asked a lot of questions and a couple key takeaways were...
- You need 1-2 cycles once the cancer is no longer detectable in your blood to keep it from coming back in the next couple of years. I got 1 cycle post the cancer not being present in my blood.
- There have been others in the trial who developed HUS whose creatinine when as high as 5.0 (mine peaked at 1.38) and all of their issues with HUS completely reversed, with no long term damage. I was far from the worst case, so there was a lot of room between where I was and having some type of long term impact from HUS.

I finally asked my doctor, if he were me what would he do. He paused, and said it was a hard choice. Typically I have had doctors go through what recommend and why. He was clearly on the fence.

As my doctor started talking out loud on the pros and cons of stopping treatment versus continuing, he realized there was a bit of a loop in the protocol. I could come back for "re-staging" (which is the battery of tests once treatment is finished which is what they had scheduled for me this week), and if it showed MRD (minimal residual disease) then we can schedule 2 more rounds of treatment knowing I need them. If I don't show any MRD, I'm done for now.

I am flying back to DC tomorrow. I believe they are going to admit me on Wednesday for a few days of testing. My bone marrow biospsy is Wednesday and some of the other tests I had at the beginning of the trial are on Thursday. I have no clue when I will get to come home, but I am hoping it will be Thursday or Friday of this week.

It will take a few weeks to get the bone marrow biopsy results. I am hoping they will let me start to be more active to start to rebuild my stamina, and strength, and that the test results will be good and I will be done. I have been busily planning fantastic vacations with my family starting mid-Nov. Having two more rounds of treatment on a delay will put a serious kink in my travel plans!!

On the home front, we had a nice relaxing three day weekend. Laundry is done, meals for the week are planned and prepped, bills are paid and I am as ready as I am going to be to leave town again. Fingers crossed for good results from the tests this week!!

Thursday, September 1, 2016


That’s me.

Every email I’ve sent to my doctor, and his team, at NIH always ends up with a subject line of HF-26. I have not asked anyone what it stands for, but am pretty sure it is Human Factor 26.

I know I am the 26th patient at NIH in this trial (and number 77 overall including other locations). For awhile, it was a bit of a game with me. I’d send emails with subject lines of “labs” or “update” and when my doctor replies it always gets changed to HF-26.

It is kind of dehumanizing to be referred to like a robot in Star Wars. Luckily the research nurses are wonderful and text me, call and keep me in the loop on every decision pending, and treat me like a friend.

My labs yesterday were not the best. My creatinine was down another 0.1 to 1.01, but not to the 0.9 or below levels my doctor wants to see. My hemoglobin and platelets were down too… and oddly enough my glucose and ALKP were low even though I had eaten breakfast, same as I always do before my Wednesday labs.

I still have a ticket to go back to NIH next week. For most of yesterday I thought that I was definitely going back next week and what was going to happen (treatment vs testing) would depend on my labs next Wednesday. My doctor has decided he thinks we should push my return to NIH back another week so we have a better shot of being able to continue treatment. He has to get the drug company sponsoring the trial to align to this, so I am on hold for the next few days, while they get aligned.

My family is excited about the thought of me being able to be here another week. I feel lucky to have a teenager, and tween, daughter that actually want me to be around. I am just glad I get the 3 day weekend coming up at home. It looks like the torrential rain is going to pause here for nice weather which will make the weekend that much nicer.

We are hanging loose, and taking it day by day….