Sunday, May 29, 2016


When you talk to people online there is a lot they disagree on, but everyone agrees being in treatment and drinking any alcohol does not mix. This is really not hard either because the big drugs you get in treatment kill your taste buds, and you feel so bad for so much of it you really usually don't want to eat, much less drink.

What is ironic with moxetumomab though, is you wake up every morning feeling like you have a hangover. I am almost 2 weeks out from when I had the drug and I am still waking up every morning with a headache and feeling very dehydrated. Now I know the dehydration is a watch-out throughout the treatment period (hence the militant rule against sweating), but I had not connected it to how I'd feel each morning when I sleep through the night. I had thought since the drug was out of your system fairly quickly post treatment, and I would have thought my blood vessels would have fixed the holes before the next round.

So I have had no alcohol to drink in several weeks, but wake up every morning feeling like a have a hangover. Thanks to Tylenol and a tall glass of water each morning those systems quickly abate. Otherwise I am feeling really good and looking forward to a pretty normal week this week.

I started back to work Thursday. I came home mid-afternoon and crawled in bed and took a nap, but it was nice to feel better and do "normal" things.

My blood work last Wednesday was about what I am use to. It was a mixed bag. The bright spot was my platelets that had doubled since I left the hospital. They are still not quite normal, but the huge surge has greatly improved the appearance of my arms, post so many IVs, PICC and needle sticks. I no longer look like a battered woman!!

My hemoglobin was low, but about the same as when I was discharged, which was not a surprise given how tired I have been. Hemoglobin carries oxygen to your organs, etc. Low hemoglobin = feeling tired.

My ANC (Absolute Neutrophil Count) and White Blood Cells were lower than the levels when I was discharged. This means my immune system stinks. If you are sick please stay away!! Hopefully this improves before the flight back to Bethesda a week from Tuesday.

The girls finished school on Friday. Chad got back from Geneva last night. We have a low key weekend planned, and I am going to be savoring every day over the next 10 days. Then June 7 I head back for round 2 and I will begin the countdown until I can come home again!!!

I will likely focus on enjoying my time home, feeling good, and will probably not post again until round 2. Hope everyone's summer is off to a great start!

Tuesday, May 24, 2016

On the Mend

Sunday was my birthday and the best gifts were just being with Chad and the girls, and the fact I turned the corner and finally started to feel better. By late afternoon my vision was at least starting to improve. It is the worst feeling when you feel miserable and just don't know when you are going to start to feel better.

On Saturday, I was on about day 5 of not being able to see and feeling terrible. Chad was suppose to leave for Geneva for work on Sunday. For some reason we thought it would be no problem for him to go out of town and for me to start back at work yesterday.... we were overly optimistic.

I did not think I could make it through the full day on Sunday without Chad's help. The girls are at easy ages and are huge helpers, but they can't drive and I felt like I would need to be awake all day Sunday (normally not an issue but this past weekend not achievable!).

We worked through "what had to be true" for it to work for Chad to go out of town. A one day delay was key, Chad was able to push his departure back a day. I could not drive Monday for sure...thank you to neighbors and friends that have helped getting the girls to/from school!  I did not think I could do dinner every night (and driving to get take out was not a sure thing). Chad and Katt when to Prep, Freeze, Cook and got a few meals, which so far have been great.

The other hurdles for the morning were walking the dog and making the girls breakfast. Again, typically no problem, but mornings lately have been hard for me. Katt immediately volunteered to walk the dog in the morning. She is up anyway she said. She was out the door with Lilly this morning before I had opened my eyes. Our deal was she had to wake me up before she left and take her phone. She had woken me up so I was half conscious when she left.

After about 15 minutes I sent her a text to make sure they were doing okay. No reply. So I called. No answer. Then I wondered if her phone was still plugged in charging in the kitchen. I got up quickly, threw on clothes, went downstairs and saw there was no phone and then panic set in. I called again and no answer. When I located my keys and started out the back door (which I had heard her leave through) I saw her and Lilly walking in through the back gate. She said, "Mom, you know I like to let Lilly go slow and smell things." Her phone was on do not disturb in her pocket so she had not heard it. As retribution for my mini heart attack, she brought me OJ and an English muffin in bed for breakfast (then did dishes). Katt is so responsible, and thoughtful!

For awhile now, Katt has gotten up, gotten ready and then made her own breakfast. For Margaret, breakfast is her primary meal of the day. A "normal" Margaret breakfast is 2 scrambled eggs, 2 pieces of raisin toast buttered, 2 Eggo waffles with Nutella, and a glass (or 2) of OJ. Marg does not eat a lot the rest of the day. The other part of the "dad goes out of town after mom comes back from 2 weeks in the hospital deal", included Marg making her own breakfast. She called up to see if I could please turn NPR on the Sonos in the kitchen. Did not realize this was such a key part of her morning routine, but apparently it is. She made her normal breakfast and dishes made it to the sink. When she came up to get ready asked how it went she said her waffles were not toasted enough, and her eggs were a little too hard, but otherwise okay. Then she commented "making toast and egg is harder than it sounds" :). She has 4 more mornings to perfect her technique.

Very glad this is the last week of school for the girls and it is all fun stuff. They are excited to get to school in the morning, and no homework at night.

I am trying in to rest and rebuild my strength. I am curious to see what my counts are when I get my labs done tomorrow. The fatigue feels like low hemoglobin, or medicated fatigue vs lack of sleep, but glad to be able to see again. Will see what the #s tell me tomorrow!

Saturday, May 21, 2016

Catching up on lost sleep

It is wonderful to be home. It was much harder than I expected to be so far away from Chad, Katt and Margaret. While I was gone, Chad and the girls (I think mostly Katt) built planting boxes and mounted them off our fence and filled them with fresh herbs that I like to cook with. They also planted flowers in our pots. It was a great gift to come home to that I am excited to enjoy this summer.

Since I've been home, I feel like I am giving our dog, Lilly, a run for her money on who can sleep more in a 24 hour period. I think I have been sleeping, or resting, something close to 40 of the last 48 hours. Friday I got up to have breakfast with the girls before they left for school, then I took a nap. I got up and took a shower, then I took a nap. I unpacked my suitcase, and yes, you see the trend, then I took a nap. I feel like my body collapsed when I got home and has been trying to catch up on all the lost sleep from the last couple of weeks.

Since I have been home I have also been taking medication to help reduce the swelling from all the fluids. I have been talking to my doctor at NIH and his team daily, and they upped the dosage today which is finally starting to make a difference. The swelling around my eyes is the most problematic. It is starting to go down some. It is down enough that one of the girls said they could finally look at me without being repulsed (got to love teenage honesty).

My vision is still very blurry from the swelling so it is giving me bad headaches, and I can only read, or do anything with my eyes for very limited periods of time. I am typing this in mega large font so I can read it (but expect more typos than normal!). Hopefully by the time I start to be able to be awake more than a little bit at a time my vision will have gone back to normal.

So for now sleep, hanging with Chad and the girls, and everything I can think of to get the swelling around my eyes to go down (cucumbers on them, cold compresses, tea bags, etc.), is what is going on with me.... Once I can see then I am looking forward to a little bit of "normal life" before I head back for round 2 (flight is booked for June 7).

Thursday, May 19, 2016

Homeward Bound

I am waiting for the doctors to come through and give me the okay I can leave today. I am packed and very anxious to get out of the hospital.

I don't look like I did when I came in. My eyes are swollen beyond anything I could have imagined. Half the water I am retaining is around me eyes. The gory look is the least of my concerns. The swelling is so profound it has altered my vision - everything is blurry (so this post will be short). When I walk around, in particular, the blurred vision leads to headaches and nausea.  While the moxe did not give me the good ole chemo feelings it did start off a bit of a chain reaction that has left me feeling chemo miserable.

They did send me to an orth consult a few days ago and he confirmed everything structurally in my eyes was fine. The retention of fluids around my eyes is causing the blurred vision so it should go back to normal once the fluids dissipate.

The doctor overseeing this trial says things are looking great and I am free to head home. While I feel miserable, good to hear that in terms of killing the cancer things are moving in the right direction. I am being send home with a small pharmacy to rebalance fluids and prevent other complications. The next couple Wednesdays I will get blood work done, and see my local oncologist to check in.

Tonight will be the first night in a week I will not be woken up ever 2 hours to drink water. Looking forward to that small luxury along with sleeping in my own bed, and giving my family HUGE hugs.

Monday, May 16, 2016

Ready to Go Home

I am so ready to go home. I got a roommate yesterday evening. She very nicely asked when she turned her TV on at 5 if it was too loud (which it was not). However, her TV said on all night long. I slept for a few hours until I had my first wake-up call and could not get back to sleep.By the time real morning hit, I felt like death warmed over…

Today was my last moxe infusion and it had extra blood draws every hour plus meds and vitals. It was pretty much a packed day. By early afternoon I was feeling even worse than I did first thing in the morning. We are not sure yet if it is food poisoning (my guess), or if I have picked up an infection. I have landed myself on isolation until that is resolved. So my roommate was moved out and I am once again solo. I also have an order in for some meds to help me sleep tonight.

The girls and Chad are doing much better than I am. They are rocking homework, laundry, and everything that needs to be done. The girls made their own cookies for the end of season track potluck today. Margaret completed her last big take home project. Katt has taken over planning meals for the week, making the grocery list, and is massively helping Chad on the laundry front. We have already said we had kids in carbon copy, and she is mini-me.

I am counting down the days to come home and sleep in my own bed, and see my family. I will not have to wake up every 2 hours to drive water, but I still am not allowed to sweat, or lift weights or anything heavy. The poison in the moxe puts holes in your blood vessels so water leaks out of them. I am told if you do anything too strenuous on your muscles in this state you could tear them. I was curious where the cancer went if once the moxe was on it, it “leaked out of my blood vessels”. I was assured my white blood cells would hunt it down and clear it out of my body.

Today I got my orders for labs and doctor’s visits while I am home between cycles and the dates of when I need to be back here. Tomorrow I meet with NIH travel to get next month booked.

Three more nights at NIH and counting! 

Friday, May 13, 2016

Take Moxe vs Chemo

Moxe was definitely much easier than chemo. I am tired from the benadryl (to temper any potential allergic reactions) and being woken up every 2 hours in the night to chug a water bottle, but otherwise did not have any other side effects yesterday.

Everyone rounding came in with smiles this morning and one of the nurse's put her arms up in a touchdown sign. I apparently was on over achiever on the water drinking front and drank 12L in the last 24 hours (compared to the required 6Ls). They were thrilled. I laughed out loud. I kept drinking water throughout the day yesterday, and I would check off on paper each time I finished one, but I had not mentally added them up. Hopefully this is good news for my kidneys and gets the cancer, and drugs out of my system quickly.

Yesterday morning before the moxe started my labs showed my bloodwork had dropped significantly. They are not sure why. It will still take another 1-2 weeks before the full bone marrow biopsy pathology report is back but the prelim report shows my bone marrow was about 75% cancerous. Potentially I just hit the tipping point this week. My hemoglobin has been down in the single digits the last few days, which means less oxygen than normal making me tired. My platelets and neutrophils were (and are) also down significantly. So more precautions in terms of what I can / cannot eat and do to avoid infections.

I had  a roommate for about an hour last night. She had a suspected infection, and open wound, which is very bad for someone with little natural antibodies to be around so luckily she was moved out and the room was cleaned not long after she was moved in.

Today is a "rest day" and then tomorrow and Monday have more moxe and then next Thursday fly home. I asked this morning when we will know if the moxe is working. Sounds like when I come back for the second cycle in June they will do tests that will help understand if it is working, or if my body has antibodies that are fighting against it. I'm thinking positive thoughts that is working and am continuing to drink my water!

Wednesday, May 11, 2016

I'm in...

I have passed the barrage of tests and questions and was formally admitted to the moxe study, and to NIH inpatient this afternoon. For now, I have my own room, but an empty bed lines in wait. Luckily on the days you are not getting infusions, you are not chained to your bed and you can roam the halls, or campus with some hard limits. Some of the caveats are no sweating allowed  (seriously this is one of the big rules - must keep the water in you), and you have to drink 1-2 cups of water per hour and measure your output regardless of where you are (think about what you need to measure output and you don't go too far from your room, for too long).

NIH feels like a nicer than average hospital compared to the other hospitals I've been in. There is a small patient library where you can check out books and DVDs. There are lots of light, bright seating areas in common spaces. There is a small fitness center (that I am not allowed to use, but still nice for other patients). So not huge amenities, but my last 2 times around I was not able to leave the unit I was on, and there was nothing that made a longer term patient's stay easy so the little things are nice touches.

I am not sure what time things will get going tomorrow. I had an IV put in my right arm, and a PICC line put in my left arm earlier today. I know there are some pre-meds and pre-hydration that happens. It sounds like for about 6 hours I will be very closely monitored, even though the moxe infusion should only last about 30 minutes, to make sure my body tolerates the drug.

I know I will likely regret this statement, but after all the testing and running around from the last few days lying in bed and having drugs fed into my veins sounds like a welcome break!

My eyes are blurry I am so tired so have to sign off... I expect tomorrow I will be out of it, but Friday will post an update of how round 1 of Beth & Moxe goes.

Tuesday, May 10, 2016

In the name of science

We made our way back to NIH bright and early this morning for more testing. Our new id cards helped us speed through the security entrance. I had lots more blood drawn, then an EKG followed by a stress test. Today was a lot of testing to establish baselines and help then see if there are any trends across patients with chemo resistant hairy cell leukemia.

I was not excited about having to do the stress test (treadmill run) the morning after a bone marrow biopsy (bmb). Everyone said the person who did my bmb was good, but you cannot tell for sure until the next day. You really cannot make a bmb pain free despite the local numbing. You are sticking a massive needle into someone's hip bone and extracting both bone marrow and a sample of bone; it just hurts. The sign of someone who is good is 1) they do it fast, 2) they get the samples without multiple taps, and 3) you are not sore for a week (or more). The man who did mine yesterday was definitely good. It felt like a bmb, but it was over in 15 minutes, or less, and I hardly feel it today.

So the stress test was non-eventful, and did not hurt as much as I expected. My heart looks good, my eye exam later in the day was good. The results of my CT scan did not show any tumors, or enlarged lymph nodes, and my blood work is still "bad" enough that I qualify for the trial.

I am tired, from the poking and prodding. I feel like NIH has a lifetimes worth of scans, blood and test results but realize we have only just begun.

My vision is still blurry from my eyes being dilated so am going to close them and rest and recover from today, but just wanted to do a quick update.

Still a nervous something will come up that will DQ me, so will be glad when I am admitted tomorrow afternoon! We are back in the morning for more labs and then I finally get to meet with the doctor who is leading the trial.

Monday, May 9, 2016

First Day of Testing at NIH

Well, day 1 at NIH is behind us. For anyone who has not been here, NIH is  huge. There is security to get into the campus (which visitors will have to go through). We had to get out of the car to let them check for bombs, and other contraband. While that was happening we had to go through metal detectors along with getting all of our bags scanned. Then we got temporary photo id badges... more permanent badges with 1 year access came later in the morning.

We found where we needed to go pretty easily and after getting registered I started off with lots of blood work (18 vials). I also found out that I am the last person that is going to be going through this trial at NIH. The person across from me getting blood work done was patient #1 in this trial. Turns out this is like Hotel California, once you are in your have return tickets for bone marrow biopsies and blood work every 6 months at first, then every year. When I asked the nurse how long you need to come back annually for blood work and bone marrow biopsies her response was "until you die, or you tell us we are crazy and want to stop."

My next stop was for a CT Scan. The best part of the CT test was the sign in the changing room. It was a simple changing room with a bench, selves with disposable hospital scrubs a nice framed picture and a sign. The sign said...."PLEASE, BE REMINDED THIS IS NOT A RESTROOM. THANK YOU, SO MUCH."... There was no sink, or plumbing of any kind, or any drains on the floor. It looked a lot more like a closet than a bathroom. All I could think was how could anyone mistake this for a bathroom? and how many times had that happened before they put up a sign??

While my appointment was at 10, at noon I was still waiting. They were down to only 1 working machine today which left a lot of people extra grouchy because that was just the icing on the cake for a not fun morning anyway. For this test you cannot eat, or drink, after midnight, which results in not the most patient, and tranquil patients to start with. Add to that making people chug about a liter of really vile liquid for this test, then sticking them with an extra large IV needle ... then telling them while it is 2 hours past their appt time you still have to wait for your 5 minute procedure.... most people were not happy, or soothed as much by the warm blankets as they typically can be (tip of the day - always ask for warm blankets in hospitals if you are cold - one lovely, little luxury).

They saved the best for last and off I went after the CT scan for my bone marrow biopsy.. I had clearly blocked out the memory of my last one... and I missed Chad since he has been at all of the other ones I have had.  They were fast with it and by mid afternoon was in bed asleep for the rest of the afternoon.

Tomorrow we go back for more blood work, a stress test and eye exam. Wednesday is more blood work, a clinic visit with the doctor, and then later in the day on Wednesday I will get admitted and have the PICC line inserted. Thursday will be my first day of the infusion.

My parents have been very sweet, and are going to know every corridor of the NIH Clinical Center by the time this is over. We know where we are going tomorrow, but will probably be early "just in case". I had to hold them back this morning so we did not arrive before everyone else!!

Thanks to everyone for your support. I am excited to be here, and sincerely optimistic about getting a much more durable remission from this protocol.


Wednesday, May 4, 2016

Bethesda Bound

It has been a long time since I have posted anything on this blog. Over the last year and a half we have moved to a new city. The girls have had a great start-up, and a smooth transition to a new school and have both made great friends. Chad and I have started new jobs, and gotten settled. Unfortunately, in all of this change, I have not been able to shake my cancer.

For those of you who are new to my cancer saga, the cliff notes version is… I was diagnosed in Oct 2012 and my bone marrow was 90% cancerous and I got to spend a month inpatient at University of Cincinnati hospital getting chemo. We thought we had gotten it all (testing showed <1%), but only 18 months later my bone marrow was back to 80% cancerous. In May 2014, round 2 of chemo started with a month of outpatient treatment followed by a week in patient. After that testing showed 0% cancer. Clearly we did not get it all because it is back.

Now I am bound for Bethesda and the National Institute of Health (NIH) to be in a Phase 3 clinical trial for moxetumomab. It is a trial focused on people with chemo-resistant hairy cell leukemia (=me). The results have been very good. It is not a chemo drug, but rather is a monoclonal antibody. This is basically a combination of a poison (have to have that to kill the chemo) and a modified mouse antibody. The antibody is naturally attracted to a protein found on the surface of hairy cell leukemia (HCL) called CD22. So basically the antibody is attracted to the cancer like a magnet and then the poison kills it. It is much more targeted treatment than chemo, which wipes out the good and the bad.

While it completely stinks that my cancer has raged back, the good news is that it looks like I have gotten in this trial where I should have a much better chance of having a more durable remission.
I fly to Bethesda on Sunday. I have to arrive at NIH very early on Monday morning for a full day of poking and prodding. The fun filled lineup includes all the basics someone with HCL expects – lots of blood work, a bone marrow biopsy, a couple CT scans – and some fun extras (e.g., eye exam, non-stress test, etc.). I am sure to be sore and tired on Tuesday. Then assuming nothing comes up in the testing that disqualifies me for the trial, I start treatment inpatient at NIH on Thursday.

I’ll have a PICC line inserted each time treatment starts for the infusions, but the infusions themselves will be shorter than in past regimes with infusions only on Days 1, 3 and 5, versus around the clock. In between, you are flooded with fluids (literally – online people have told me to expect to gain 20 pounds in water weight each cycle!! The men say it comes off quickly, women not so much).
Assuming my kidneys do not give out on me, then I get to look forward to about 10 days in patient at NIH once month for six months. Luckily my parents are close by, as well as many good friends, who have already generously offered to bring me non-hospital food, and come hang out with me.

On the home front, the girls are busy with school and track. I am hoping we can use the next 6 months as an opportunity to shift the seam on laundry and cooking dinner!! We know it is going to be a long 6 months and will get harder the more cycles we go through. Right now though everyone is pretty positive. We know the drill and no one is anxious.

I will keep you posted on how next week goes. Keep your fingers crossed for me that nothing comes up that DQs me from the trial. Doctors are all aligned I need treatment again, and if for some reason I am not a match there is not another good non-chemo alternative out there. All the doctors agree too that 3 rounds of chemo in 4 years is not a good thing either…