Sunday, December 11, 2016

My Big, Fat, Crazy Normal Life

I am loving the craziness of life returning to normal!!

The day after I got back from NIH for my barrage of testing, we went to visit my youngest sister and her family in Abu Dhabi for the week of Thanksgiving. It was wonderful cousin time, and we had tons of fun in both Dubai and Abu Dhabi with all there is to do there. It was a little insane to do a trip with a 10 hour time difference and 24 hours of travel time because of the number of connections we had to make, but we all rolled with it.

I started back to work right after Thanksgiving, but feels like I have been back much longer than two weeks in a good way. All of the normal holiday madness (e.g., baking, gifts, cards, parties) are in full swing.

Last weekend I realized how nice it was to just be home and able to help my family. Everyone was in line for something from me. Chad wanted me to preview our holiday cards before he ordered them. Margaret had literally hit a snag with a sewing project she needed some help with. Katt was baking for her teachers (all new recipes, literally all day) and she needed an extra set of hands on a few steps. Last but not least, Lilly needed a walk. It was nice to be feeling good enough to just have a normal weekend with my family needing my help on things I actually could help with.

My labs are still looking better than they have looked in 4 years. I feel good - just middle aged, and out of shape which I have come by honestly. I am still waiting on the final pathology report from my bone marrow biopsy.  The early results are not what I wanted. My blood is clear of cancer, but my bone marrow biopsy still showed some "minimal residual disease", or MRD. So since I never totally kicked it I only have to get labs every 3 months. If I had I would have had to go monthly for labs to what for when it returned. This is the one time I would have gladly had more doctor appointments!!

The nurse that gave me the news told me two people (over the last 15 years of trials) had the same thing happen and when retuned to NIH for their 6 momth post treatment bone marrow biopsy it was all gone. While I have a great track record of being in the small end of the distribution, I am not holding out hope for this. I'd rather be pleasantly surprised. I had a day, or two, of being really bummed out, but now am blocking this out. There is too much life to focus on, and I am feeling good so am going to act like I am cancer free, and hopefully I get 2+ years before another round of treatment!!

Friday, November 18, 2016

Humbled

I got an email from my parents last weekend saying congrats on winning one of the best blogs of the year. I was totally confused by this email. What were they talking about? I googled and found what they had seen. Healthline.com named my blog one of the best leukemia blogs for 2016.

I am not sure who nominated me, but thank you. I am honored, and humbled by it. I told my children I may need their help to take up my game with some editing, and the format. My usual M.O. is to write whatever is on my head with scant editing (which I am sure you have noticed). On the format,  Chad set up the blog for me the first weekend I was diagnosed 4 years ago with the bare minimum features, and we have not touched it since (which, again, you have probably noticed!).

And, yes, my children finally do know about the blog. I realized some of their cousins knew. So a few weeks ago I had some quality car time and I mentioned it. Like usual, they were non-plussed and said they knew about it. They had heard me talking to Chad about needing to do a post, etc.

I asked if they had ever read it and their reply was mom why would we, we talk to you multiple times a day, we know exactly how you are doing. I felt compelled to tell them that I also shared stories, many that included them. They shrugged with a whatever. Once again, my children prove that adults have way more baggage about things!

I finished up my final testing this week. My labs were the best they had been in 4 years.  I had very little antibodies the first 4 cycles. I had an extra 2 weeks to recover before cycle 5 and they started to increase, but were still at a level considered negative. For cycle 6, my antibodies were 98% (so I might as well have skipped that one), but my doctor was excited to see these results and was glad we had made the decision to continue treating.

Turns out once you have the antibodies, they will be in your body until you have chemo which wipes them out along with everything else. There are some people from Phase 1 of this trial that 12 years later are still in remission. I am hoping for 5+ years. We have already talked about what treatment we will do next, and the plan is a BRAF inhibitor drug regime. A few are approved, and my doctor at NIH has a couple in trial.

It will be a few weeks before I get my bone marrow biopsy results, but I am feeling good and ready to return to work after Thanksgiving. When people find out I have leukemia the standard response is "but you look so normal". I am thankful for looking and feeling normal, and I am planning on having at least 2 good years. I'll just be getting blood work checked monthly now, and will be back at NIH in 6 months for another bone marrow biopsy and MRI.

Thank you to everyone who checks my blog! I hope you find it helpful to stay in touch with how I am doing, and also for anyone newly diagnosed it gives you some insight into the ups and downs, and a patient's perspective on treatment.


Thursday, November 3, 2016

My busy season

For many people their busy seasons coincide with some big event at work (e.g., year end, a big project, etc.). For me it is the end of Oct, to early Jan when everyone in my immediate family has their birthday on top of all the holiday craziness. I get to mid-Jan and just want to take a long vacation....

With Halloween (and Chad's birthday) behind us, we have Margaret's birthday coming up plus Thanksgiving, and honestly the big dog, Christmas, is already not only showing up in stores, but also at chez withers. The girls have been making gifts for family members for months so the wrapping and staging to ship has begun.

For about a month now, half of our first floor has been taken over by crafting and gift wrapping. The guest room has been turned into the sewing room, and the official craft room in the basement has a lot of projects in flight. Regardless of the appearances of starting early, it will still be a forced march to the shipping deadline to get everything out on time!!

It is great to be home and have time to focus on my family. I am feeling good, and just working on building up my strength. I feel like my muscles are slowly waking up as a start to move from walking to jogging.

My labs looked great last week and this week. I head back to NIH week after next for final testing. I really don't expect to learn a whole lot from these tests. The big test for me will be when I go back in 6 months to see if the cancer has started to come back. In the meantime am going to back in a lot of normal activities and living!!

Monday, October 24, 2016

Getting Going

"Try and rest, and don't do too much. Just be mad at me tonight for all we didn't do while you were gone." These were Chad's parting words to me Friday before he left to take the girls to school and then head in to work... he knows me too well!!

I am really itching to be more active. I think my body has built in defense mechanisms and a couple days before I left the hospital I started having issues with my back. The meds for that are good at making me sleep, and I really can't lift, or even sit for that long with it. It is slowly, but surely feeling better and hopefully will feel more "normal" by end of this week.

The only other side effect, besides fatigue, I am still battling started during cycle 5. My hands were falling asleep while I was sleeping. It has been waking me up in the night, and I shake them and they fell normal again. Turns out I have carpal tunnel from the excess fluids, and edema. I thought carpal tunnel was just caused by repetitive motion. I am learning I was very wrong. The swelling has caused the central nerve that runs through your arm to your hands to be restricted.  I am heading to Walgreens today to buy splints to wear at night. I have a massage booked in a few weeks (could not get one earlier!). I am very much hoping I can resolve this non-surgically. The issue with it persisting is it can cause long term muscle atrophy, and it makes it difficult to grasp objects. Definitely need to get it addressed.

Otherwise I am crazy glad to be home and done with treatment. I have a few weeks of rest and recovery and then am back at NIH Nov 15-17 for final testing. That will be when we really know how well everything worked. This week I will hold myself back and not do too much, but looking forward to taking walks and starting to exercise next week!!


Tuesday, October 18, 2016

Communities

After a few extra hours, and a few extra blood tests, my final round of treatment went smoothly yesterday. When it was over, I totally sacked out. I slept the afternoon away until 3pm shift change. I awoke to a group of nurses singing congratulations to me, holding a congratulations chocolate cake. They reminded me of how Chi-Chi's Mexican restaurant would sing happy birthday to you with lots of energy and enthusiasm, and moving around. They were great!

It was very sweet, and thoughtful of them, and I was very appreciative... not to mention I LOVE chocolate cake. It is nice to be officially done with my treatment. Makes me think of one of the only Latin phrases I know "Alea iacta est" which means the die is cast.... just have to wait and see the outcome.

I am feeling very thankful for all the different friends, and communities of support we have, as I finish up treatment. We have been lucky enough to have great communities of support everywhere we have ever lived. I had a friend before one of our moves to Cincinnati ask how we could leave the community we built there, weren't we scared. We have always looked at moves as adventures. When I think about our closest friendships, it is like a patch work quilt across the places we have lived in our lives. I can't imagine not having met the friends we have made across the places we have lived.

Thank you to everyone in the DC area that has braved the traffic, security and maze of hallways from the garage to visit me. Thank you to everyone in Peoria that has helped us at work, with rides for the girls and with whatever else we needed help with. Thanks to our families for the travel to see me, the calls, and everything you have done. Thanks to all the staff at NIH, and especially the nurses, for the great care and friendship over the last several months.

Excited to get home on Thursday and start my recovery without any more treatments on the horizon!!

Sunday, October 16, 2016

Final Countdown

I feel like I have counted down months, and cycles, and now I am finally down to days... 4 more days inpatient at NIH, assuming no complications.

My labs have been looking really good. The first two rounds of treatment were uneventful, and hopefully tomorrow will be more of the same. I am tired, and a bit nauseous but nothing to complain about.

After I go home I'll have a few weeks to rest, and recover, then I'll come back to NIH for 2-3 days (outpatient) for final testing mid-Nov. The bone marrow biospy will show us how low the cancer has gone, and I will also get the long awaited test results on whether I have antibodies against moxe. This test has been done by the drug company, my doctors, and I, do not get the results until after treatment is completed.

If I have developed antibodies chances are the duration of my remission will not be too long. The presence of antibodies to the moxe will show that my body has been fighting against the effectiveness of the treatments I have received. If I don't have moxe antibodies, there is a good chance that I should have at least a few hospital free years in my future. Definitely hoping for the later...


Thursday, October 13, 2016

Sisphyean Tasks

There is a story from years ago when we lived in Geneva, and Chad worked on the Western European Oral Care business that I have been reminded of lately.

There was a push from the Sales and Marketing community for an initiative that had been tried several times unsucessfully in the past, and that did not have good financials. Those advocating for it thought it would build customer relationships, and consumer loyalty, and payout in more shelf space and repeat purchases down the road that were not valued in the current financials.

The Engineer on the business was incensed that the General Manager approved the project charter and he was stuck on this team. He had worked on similar past initiatives. He suggested this initiative be called Project Sisyphus sarcastically to reflect how he felt about it. To his surprise, everyone agreed.

My husband came home laughing about it. He knew at once the name had been suggested because in Greek mythology Sisyphus was condemned for all eternity to roll a heavy boulder up the same hill every day, only to have it roll down and hit him. By the time the other team members figured out why the project name had been suggested they were not very happy about it, but it was too late, the name had stuck.... and the initiative did live up to the name in the end.

I was not very in to Greek mythology in school, but ever since our Geneva days when I think about the never ending tasks in my life I think of good old Sisyphus. Of course my Sisyphean tasks tend more towards the mundate - laundry, cooking, cleaning, and this time of year, raking leaves.

Being back at NIH, I feel like cancer treatment could be another one. It is a pain, and at times laborious, but I hope this time not futile.

I am ready for day one treatment to begin. Yesterday was one of those off days here, where the lab tech drew 16 vials of blood only after she had pulled the needle out did she find one additional one and she had to stick me again. Hoping that is the worst I will face the next couple of weeks!



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

HF-26

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….

Thursday, August 25, 2016

Fortitude

I get to the end of each cycle and think "I cannot do this again!". Then I finally hit a day where I don't feel terrible, and then get a few of those in a row and I start feeling like myself, and am optimistic and feel like I can do anything :).  I have finally turned the corner this week and it feels good to finally be bouncing back.

My family has been just resilient. I was very proud of them last round for hosting a party without me. Katt had talked us into hosting a get together for the 8th grade class and their families the Sunday before school started. I knew this was slightly crazy to say yes to when we did since it was the Sunday after I got home from treatment, but we could tell how much it meant to her, and we like to entertain.

We were clear in the evite that it was a casual, potluck cookout (read please set your expectations low!!). When my hospital stay got extended we considered postponing With much list making, and back and forth conversations, we decided to go ahead and the girls and Chad got it together. The families that came brought great food, so it sounds like it was a great time had by all... I was sorry to miss it, but was proud of my family for rallying and going ahead with the party.

Katt called me afterwards and was oozing with happiness, and clearly had a great time. Margaret texted me about halfway through and was hiding out in her room. We facedtimed for a long time after that. She propped up her ipad on the floor and I kept her company while she colored, and we just generally hung out. Hoping my girls are learning that while you cannot always control things in life, you can control how you react to them.

My labs yesterday improved across the board, but my kidneys look like they are still not at 100%. My creatinine was down to 1.11 but the NIH range for normal for women is 0.51-0.95. My doctor wants my levels to come down below 0.9 before we restart treatment. So am in a watch, and wait mode, for next Wednesday's labs...


Thursday, August 18, 2016

Why was getting home before the first day of school important?

The girls had a great first day of school yesterday. They are both back at the same school they were at last year where they were excited to see their friends, and they love the teachers. Given those facts, plus their ages (6th and 8th grade) it is not an illogical question on why did we all want me to get home before the first day?

First, was my key emotional support role as clothing consultant. Chad actually gives very good fashion advise when needed (i.e., he honestly looks at options and gives opinions), however he is the Dad.

Katt has grown literally 5-6 inches over the last year. She needed new shorts desperately. She has sensory integration issues so buying new clothes is not typically a fun event with her. Routine is important, and transitions are hard for her. She gets better and better each year, but having me home is part of the routine. She and I had ordered many pairs of navy shorts (you would be surprised how many styles you can get from LL Bean and Lands End alone).

We had all but the winning pair, before I left for this last round of treatment. None were "just right", so we made one more ordering effort and those arrived after I left town. We had talked the back up plan of a Face Time fashion show which was met with angst. Tuesday night after my arrival home (still with some angst) she found a pair she thought she could make work. Luckily they were comfy day 1, so more have been ordered, and, yes, she will be doing dirty but wearable a few days each week until re-enforcements arrive.

I also play a key role of finding everything lost in our family. Tennis shoes were missing yesterday morning, but with my clairvoyant skills hunted them down in a duffel bag in a closet and everyone made it out the door on time for a great first day.

Margaret told me last night having me back had a "calming effect on everyone". I gave her a big hug and told her being home had a calming effect on me, but inside I laughed. Maybe you could argue I keep things calm on the surface while the waters are churning below. More likely I am described as killer waves stirring things up, and making things happen.

They would have been fine without me, but we are all glad I am home. I am pretty wiped out today. Tuesday was full with getting discharged and travelling home. Yesterday I spent the morning at my local oncologist for my regular every Wednesday lab work while home, and my once every 3 months check in appointment with him.

My labs yesterday were about the same as the day before, with my creatinine up slightly. Today I am resting and we are working on some side effects of re-adjustment post - edema, and ongoing sluggish kidney issues. I am going to be down and out a bit longer this round.

I've asked when they'll know if I am going back from more treatment, or just testing. My flight is booked as if it will be another round of treatment. The nurse was not sure so am waiting to hear back from my doctor. I'm assuming it will be after more labs, closer to the time when I go back next before any decision is made.

Tuesday, August 16, 2016

Busting out today!

My creatinine was down to right at the cut off for letting me get out... 1.20. My doctor had to get the okay of the drug company who is sponsoring the trial as well, but that has come through and my flight is booked. I'm waiting to get my PICC pulled, and my discharge meds.

I go into my see local oncologist for follow-up labs tomorrow. They are going to have me come back to Bethesda again, however it is TBD whether I will get more treatment, or do a bone marrow biospy. They are going to have to see how my kidneys recover and make sure no other issues emerge.

Over the last 5 days, my lifelong low blood pressure has flipped to high blood pressure with the kidney issues. This can apparently get worse when you go how and and is one of the many things that they will be watching closely.

I will still be on a very restricted activity when I get home. Formally they said I could stroll, and now it is down to shuffle.

Can't wait to get home to see Chad and the girls and finally get more than 3 hours of sleep at one time!!

Monday, August 15, 2016

No new news

Waiting test results that they thought would be back several hours ago... since it is early afternoon am guessing chances of getting out today are very low.

My labs that are back are about the same as yesterday. I don't feel bad.

There will be a short, but joyous post when I hear I can finally go home home... but until then I'm here.

Sunday, August 14, 2016

No change

Last night they redid some of my labs and they had all improved and we all thought this morning I would get out of here, but no dice.

Most of my labs are looking better, but my creatinine actually got worse overnight. They said that usually once it starts to reverse it stays on that trends so they are not sure what it is happening given everything else is improving... maybe a blip?

With the "blip" I am here until at least tomorrow. I had a better day yesterday, and got a little more sleep than the hospital norm last night, so all in all not feeling too bad.

My parents stopped up last night with dinner, and I have a very good friend coming up for lunch which is really nice to break up the time in my hospital room!

The Olympics have also been fun to watch, but I feel like the anti-thesis of an Olympic athlete as a cancer patent, in a hospital on bed rest...

Saturday, August 13, 2016

Still here...

All my labs moved the right way overnight, despite the fact I could not choke much down in the way of fluids. I have hit the limit and when the drugs aren't making me feel nauseous, all the water is.

Unfortunately, nothing improved enough to go home today. My creatinine was down from 1.38 to 1.3, but still above the okay to discharge threshold my doctor has set at 1.2. My platelets and hemoglobin were both up. This is good since my labs also show that my body is still "hemolyzing" (or prematurely breaking down) the red blood cells.

I have been on bed rest the last several days, and continue to be, to try and reverse the HUS. One other side effect of the fluids and drugs is muscle twitches, and spasms. I got a very bad back spasm that left me immobile on the hospital bathroom floor the other night (the last place I wanted to be)!! I have had these a couple times in my life before and have needed anti-inflammatory drugs, muscle relaxers, and a few days flat on my back to get over them. Unfortunately, all those drugs have contra-indications with moxe so have been given good pain killers. That combined with having to be flat on my back for other reasons has helped my back improve to the point I can see physically being able to move to get to the airport, in the wheelchair and home.

Emotionally, we are all on the ragged edge. School starts next week, and me coming home late is hard on everyone. The more nights of bad sleep I get, the more I wonder how much of how bad I feel is related to the fatigue...

Personally I am planning for Monday. I can't imagine things will move enough that they will let me go tomorrow (but would love it if they did!).

Friday, August 12, 2016

Not by the book

When I first met my doctor here at NIH face to face, he said very directly, that he had reviewed my full case history, and did not know why I had re-lapsed so quickly. I like the fact he is clear on what he knows and can explain and what he can't.

Once again, I am not a text book case - this time on HUS. Today my key kidney marker, creatinine was up, but usually with classic HUS both my hemoglobin and platelets should have been down. However, my hemoglobin was stable and my platelets were up. 

One benefit of being at NIH is access to a barrage of specialists. The renal specialists have been pouring over my data, and samples. They have confirmed I have Stage 2 HUS.. 

They think if I keep drinking lots of fluids it will auto correct and I will be able to go home in the next few days. My creatinine is the key marker we are watching. Normal for women is between 0.5-0.95. Mine has been steadily climbing the last few days up to 1.38 as of this morning.

The trial protocol is clear that if your creatinine increases 50% above the upper limit of normal (or 1.425 in my case) then you have to stop treatment. My doctor has set the threshold of 1.20 for me to be able to go home. 

I'm feeling better today and with my platelets up, my medical team is cautiously optimistic that my creatinine will be lower tomorrow, and that I will be on my way home over the next few days.

What does this mean for next round?  Top of mind for me is that I will have less time at home before I have to come back,  which stinks. My mobility will also be restricted next round. They believe muscle exertion precipitates HUS so I will likely have very restricted passes, if any at all, and will need more recovery when I get him.

I've been very tired and resting a lot, but am feeling better and hoping I can get back home over the weekend!

Thursday, August 11, 2016

Ugh... Stuck at NIH

The last few days have been kind of rough. I have not only swollen up like a balloon, but am showing signs of HUS (Hemolytic Uremic Syndrome) which has made me very nauseous and given me bad headaches. HUS is one of the documented side effects of moxe so I should have known I was going to get it at some point since I am a magnet for drug side effects!

HUS is when there is damage to the small blood vessels in the kidneys (and potentially by other organs). It causes the premature breakdown of Red Blood cells and Platelets that get clogged in the small blood vessels and can cause kidney damage, or failure.

They are all over it so am sure it will not get that bad, but I am definitely not getting discharged today. My flight home today has been cancelled, and I am at NIH until everything stabilizes which they think will be a few more days.

To say this is a drag is an understatement, but I know I need to be here until this gets resolved. My kidney function counts are not to the point yet they are ruling out me continuing in the trial, but that is something we are watching. I have talked to others online who developed HUS and had to stop as early as after the third cycle who 2+ years later still have not relapsed.

Not coming home today is a let down for the whole Withers clan.... Fingers crossed that my counts will reverse today and I can get come by Monday.

Monday, August 8, 2016

Mom On Demand

One thing my girls are liking about me being away is that I am just a click of the button from them. I get calls, texts, emails and FaceTimes, and unlike at home when I am usually in the middle of making dinner, or laundry, I am almost always free to talk, and the conversations can be very long. 

Katt especially likes to call me when she wakes up in the morning. We FaceTime over breakfast (and usually dinner as well), and then basically whenever she has a down moment and does not know what to do. She is really ready for school to start!! 

Margaret does not have a phone, just an iPad so I tend to get more text messages, or FaceTimes than calls. Her favorite is to FaceTime me and talk while we check our dragons together. (By the way, I am up to Level 20, first video game ever that I have stuck to it into double digits.)

When I have had my doctor, or nurse, in the room and can't talk, or am asleep and it takes me a bit to get back to them there is a bit of irritation on their side. They have gotten use to when I am not physically present just being at the other end of their chosen Apple device. I am not going to divulge how many times a day, or for how long we talk, because neither are small numbers.

All 3 rounds of my fourth cycle are behind me. The side effects have been the same with some swelling, fatigue and some nausea today. I glad to have the treatment behind me and am the countdown to get home now! 

Four rounds down, and just two more to go!!


Saturday, August 6, 2016

Is it getting easier, or harder?

Definitely both.

It is easier because we all know the drill. I know all the nurses and staff at NIH, so I am coming back to familiar faces. I know what days I will feel tired, and bad, and which I will mostly likely feel good.

It is harder to say goodbye to leave for another 10 days after having just been home just over 2 weeks. It is harder because I know what days I will feel tired, and bad, and there is nothing I can do to avoid them.

I have 2 rounds behind me this cycle and 1 to go. I tested positive for the common cold. I feel fine, I just have a nagging cough. This cough is the reason I get to keep my private room.

After the PICC line is inserted each time, a chest x-ray is done to make sure it is positioned correctly. It is a 40 cm line that is inserted in a vein going to your heart. It was put in perfectly, however, the x-ray showed I was likely post bronchitis, and some compression of the air sacs at the bottom of my lungs. Not a huge issue, but not something you want to ignore or it can lead to pneumonia. Now I am doing breathing exercises (theoretically each hour) to open the air sacs up. Short term it js making me cough more, but am being told that is a good sign.

Otherwise, I am tired, but feeling okay. My counts continue to look good and am just counting down the days until I get to go home again!

Wednesday, August 3, 2016

28 Cycle

It has been a busy few weeks. Sorry for the lack of updates.

The cadence of our lives these days is in 28 day cycles. The first 10 days are my treatment days at NIH. Then I have about a week of recovery, then about a week of normalcy. The pattern is Treatment-Recovery-Normalcy--> Repeat.

Katt asked me after I came home from the last cycle if I was still in my "dormant phase", which cracked me up She was looking for a buddy to watch HGTV with and at the point in time she asked me my response was yes.

As I entered the normal phase over the last couple weeks this coincided with having company come in town, quickly followed by me getting sick (then Chad, and Katt).  It was great to see family and friends, but would have been even better to have felt good!!

I am back in the treatment phase now. The good news today was that the flow cytometry analysis of my bloodwork from last cycle showed that my blood is now looking virtually cancer free (woohoo!). The next 3 cycles are to zap anything left in my bone marrow.

The bad news today was that another wing on my floor is being renovated, so it is a full house.

Luckily my bout with a bunch of  yet to be fully determined aliments ending in "itis" has landed me in a private isolation room. I have not unpacked this time. I feel like that will jinx me and get me moved out to a double. I had lots of not to be described swabs and tests today to figure out just what I have. I know it is not strep, but that is it so far. I think it is down to a common cold. Fingers crossed my sneezing and coughing lasts another week!!

Day 1 of treatment for round 4 is tomorrow. I keep telling myself I will be 2/3 of the way done after this one, and the next cycle will be post the start of school which I also think will be a bit easier for all of us.

I'll try to be better about posting, but hoping there is not much exciting to post!


Wednesday, July 20, 2016

Delayed Reactions

It was great to be with my whole family end of last week.

We got back on Sunday. I took a nap, and then after dinner Katt, and I, took Lilly for a walk. It was our normal two block loop. We rounded the corner to our street and I heard a whistle. I turned around and saw a man who had walked out from behind our friends' garage. I did a double take... was that man naked? We lived in SE Asia for 4 years, and seeing naked people out on the street was not uncommon there, but in Peoria, IL?!?!

I did not have my glasses on so we kept walking. I told Katt, but did not want to have her young eyes confirm what I thought I had seen, and she was nonplussed about the whole thing Then a few houses down I see the same man only about 10 ft away and not only naked, but masturbating. I still had a moment of is this real?... then he turned around, and for some reason the sight of butt cheeks clinched it. Yep, he was totally naked, no clothes in sight, but he was wearing shoes.

Luckily again, Katt had not noticed. We walked a few doors down and I called the police. While I was waiting I called our friends who lived on the corner of the first sighting. He came out, checked the alley, and did not see the man. The police came in a matter of minutes, but the streaker was gone. He fit the description of a streaker regularly seen in another neighborhood, but the police officer said he always moved on quickly and they never were able to catch him. Who knew the surprise laying in wait for us on our return home!

I feel like the fatigue this week has hit me with a delayed reaction. I rested, and took it easy post discharge, and over the weekend, but I did not get my normal 20+ hours of sleep for the first few days. I did go to sleep each night at the lake after my 3 year old jet lagged niece, but with the next wave of children.

Other than fatigue, and some bone pain, I am feeling good, and better each day. My labs looked good this morning. I am not quite "normal" across the board, but am getting closer.





Wednesday, July 13, 2016

20th Anniversary

I don't feel old enough for this to be true, but today is Chad and my 20th wedding anniversary. However, when I think about all the experiences we have shared like living on 3 continents, all the places we have traveled to, having an 11 and 13 year old daughter and still remembering the life we had before children, I can get it to add up to 20 years pretty quickly.

Needless to say no big celebratory plans for today. I told Chad before I left I was sorry that this is where I would be for our anniversary. He sweetly replied it was where he wanted me to be so I'd be around for our 25th anniversary.

Chad is actually with all my sisters, nieces and nephews and parents on a vacation that we planned long before another round of treatment was in the works. Everyone is having fun at the lake, and I know from my girls it has been a good distraction from me being gone.

Tomorrow Chad will be driving down to pick me up so I will be able to enjoy everyone for a couple days. I have been trying to sleep as much as I can so I can rally and be awake for a little bit the next few days as my family is together.

I am glad to not be flying home this cycle. Every trip to the DC area has been smooth, with no delays, or changes. It has been the exact opposite on the way back which has been draining. Hopefully driving over the course of several days will make it easier this time, and I will definitely appreciate being able to travel with my family.

I am very hung up on the question of "when is ok for me sweat again?". The answer I got this week was Oct 28 is when I am officially cleared. Since getting that answer I have booked a few warm weather vacations for us over the holidays. I may be missing most of this one but already have the next few flights booked!

My face, feet and hands are very swollen, and I am so sick of drinking water I am choking it down, but I still have no roommate. My laundry is done, and my bad is packed, and I am just waiting for the green light (and my ride) to leave tomorrow!

Monday, July 11, 2016

The spectrum of outcomes with cancer

The floor I am on has a mix of trials going on right now. At one end of the spectrum is my trial which is well tolerated, and the outcomes are good. Then at the other end of the spectrum there is ATL (Adult T-Cell Leukemia/Lymphoma). The 2-3 year survival rate is 10-20% with aggressive chemotherapy and only 5% survival rate at 4 years.

It was quiet here over the weekend so spent more time talking with some of the nurses. Last week 2 patients on my unit died, and at least one more the week before. I knew some of my roommates had been very ill, but I had no idea. I can see how hard it is on the nurses who care for us and get to know us to have patients who they are working tirelessly to make well die.

I feel like cancer needs some kind of staging, or differentiation across the types. There are those that have >90% survival rates with with surgery, and/or treatment. This feels like "cancer" to me. Then there is "CANCER" like pancreatic, or ATL, where the chances of living beyond 6 months once you are diagnosed are very low.

Different types of cancer have very different expected outcomes, and this week I am feeling very lucky to have a lower case kind of cancer. Short time side effects like I am having, are nothing since I have confidence based on past trial participant results that I will feel much better and have some good non-cancer time before I have to go through treatment again.

It makes me thankful for good friends like, Jack, who are running in the NYC to raise money for the American Cancer Society to help support further research. There is still so much work to do, and so many of us will be touched by cancer during our lifetimes.

Jack's page below is very much from his heart. When I read it, I told Jack it was great, he just needed to set his target higher because I know so many people would want to support him!

 http://main.acsevents.org/goto/dontevergiveup

All cancer stinks. There are many examples where different types have gone from CANCER to cancer through research, study and trials. Childhood leukemia is a great example. If you are looking for a create cause to support please consider supporting Jack in his run.  

Saturday, July 9, 2016

The Fine Art of Being a Good Night Nurse

First, I have to say I respect anyone who works a night shift. I physically could not do it. I know there are some nurses who work rotating shifts (i.e., a mix of day and night shifts) and I totally could not do that. I have always needed more sleep than the average. I can go on a bit less for awhile, but it catches up to me and comes crashing down on me.

Technically I think all the nurses here are very good, and they are also very nice. Different nurses have different styles and the night nurse style I like the most are those that are efficient, quiet and work with minimal light. My favorite night nurses come in with meds ready to go, they use a soothing voice to gently wake me up and remind me what needs to happen, and they do it without turning on a light in the room. They are in and out in 5 minutes and you are back to sleep and hardly knew they were there.

By contrast, my nurse night before last, turned on the overhead fluorescent light every time he entered the room, startled me awake every time he came in with a booming hello (literally I jumped as I was jolted awake every time he came in). He would scan my badge and then go find the medicine and only reappear with the meds several minutes later having left the light on the whole time. Same thing would happen for anything else that was scheduled at that time -- nothing was set up and ready to go. To make things worse, usually he would try and have a conversation as well which is not what I want to do after being jerked out of sleep in the middle of the night.

I felt awful for my roommate. I was definitely the bad roommate that night since I had either vital checks or meds about every 2 hours. To compound it, we had different nurses and different med schedules so it was a revolving door in our room that lead to not a lot of sleep.

Last night my roommate got very sick. The upside for me was I got moved to my own room, and it is just set up for one person. There are only 4 patients on my unit, and the max is 12. It is looking good for no roommate for the rest of the week (woo hoo!).... Fingers crossed I will have a string of good night nurses too for the rest of this run and not end up too sleep deprived!!

Counts are still looking good, second infusion of moxe went smoothly and side effects are about the same as last time. Treatment is starting to feel routine. The better my counts get the less likely I am to develop an infection that keeps me from getting released on time, which also lowers my stress. So all in all things are going well.

Thursday, July 7, 2016

Reluctant Beth Returns

I think I have mentioned before, my family (especially the girls) insisted that I needed new games on my iPad before I came to NIH the first time. They knew I was not overly excited about the new additions to my iPad so I was dubbed "Reluctant Beth" on our cloud.

Now I feel like "Reluctant Beth" coming back to NIH. It is nice to know what to expect, where to go and to know the nurses. However, it is getting harder for everyone in our family for me to be gone this long every month, and harder to leave.

Margaret is having trouble with anxiety when Chad, or I, are not around (and sometimes when we are around). The girls are fighting more, and there was a big one Friday morning. We were in the kitchen having breakfast, and then at some point Katt started yelling about how she was tired of picking up Margaret's slack while I was out of town. Not to be out yelled, Margaret started screaming back that she was tired of having to do things on her own 2 years before Katt had to.

After about 20 minutes, everyone was yelled out and sent to their respective corners to cool off. There was some truth in what they both had to say. When everyone had calmed down we talked through a solution. We'll know in a few weeks if it worked! This round there is just one more "free day" for the girls then they have plans to meet up with family and friends the rest of the time I am at NIH and will hopefully they will be busy enough time will go by quickly for them.

We ended up having a nice  rest of the day Friday. We ran some errands, played mini golf and got pedicures. We also had a very nice (albeit) rainy 4th of July weekend in St. Louis. It was great to see Chad's family and have a weekend away. We look forward to going back when there are not torrential downpours every day!!

I finished up Day 1 of treatment earlier today. So far so good, but it is so NOT exciting to be back here. I feel like I am slugging through it and will just be counting down the days. At least my lab results are solid and my doctor says they are good at this stage. Last round there was still cancer in my blood and they are hoping that post this round they will have beaten it back enough that it will not be circulating in my blood, and will just be in my marrow.

It definitely looks like I am responding to treatment which is good, but also the result I got the last 2 times. I got complete remissions, just not durable ones. I asked my doctor yesterday when we would know if my remission would last longer and the answer I got is it is too early to tell.

Yesterday and today I have taken to the halls to pace through NIH. I asked whether there was a Physical Therapist on the team I could talk to about and exercise regime that was compatible with this drug, and procotol. I was told they would let me get back in shape post treatment, but for now I needed keep my feet up and restrict exercise to strolling. This part if very hard for me!

So if you come across another blog that talks about a lady in black yoga pants and T-shirts aimlessly roaming the halls of NIH that is me!! I am reluctantly here, walking the halls, and yes, playing the occasional video game!!!

Thursday, June 23, 2016

My Secret Internet Life

The title is more exciting than this post. If you have read this blog you know all about my secret internet life, I have nothing close to the double life that Edie Falco does as Nurse Jackie. It is my children that don’t know about it (as far as I know!).

Ever since I was first diagnosed, we have tried to be very truthful, and matter of fact, with the girls about what was going on with me. At first, they were young enough that it was as simple as I needed special medicine I could only get in the hospital, and would be home after to rest and then would get better --- and I did.

They know the deal, with what is going on now. I am sure they know my good days from my bad days by how I sound on the phone (and if I am up for face timing, or not). They don’t know all the gory details though, and they don’t know about this blog.

At ages 11 and 13, I am pretty sure they would be horrified to know that I write about how I am doing on a totally public blog, and even more so that I write about them!! Of course, I think as a mom of a teenager embarrassing them comes with the job, doesn’t it?

I have been thinking a lot lately about when I let them know. I don’t think we are quite there yet, but I don’t want them to stumble across it accidentally surfing online. Katt and Margaret, if you happen upon this blog I have always thought of it as a two-fer – 1) a great way to keep family and friends up to speed on how things are going, and 2) a bit of a journal of family stories along the way since I stink at scrapbooks, hand written journals, and anything similar.

I am feeling pretty good, just tired, and the left side of my face is sore. After many discussions, and doctor’s appointments, shingles has been ruled out. The current diagnosis is tendonitis in my face and TMJ (i.e., joint on my left jaw is popping in/out from the swelling). The recommended treatment is ice, no hard foods or gum, don’t sleep on that side of my face, and keep on leveraging Tylenol. If it gets worse, or does not improve, then a visit to a (another) specialist is in my future.

My labs yesterday were so good they even got me a bit excited. Only my lymphocytes (in white blood cells that fight viruses) were still low. Otherwise my CBC looks like a healthy person J.


I feel like I am settling into a routine of this cancer treatment thing… nice to be back in the office today which feels like my official return to normalcy. Looking forward to a good week and a half before I head back to NIH on July 5. Looking forward to getting round 3 behind me and being halfway done!!

Sunday, June 19, 2016

There is no place like home

Boy, did Dorothy ever get that right. Saying it is nice to be home is an understatement.

Both flights back have been much longer than planned for different reasons. Cycle 1 was a maintenance issue causing me to have to be re-routed on longer flights to make a connection to Peoria. This time it was weather between the Midwest and East Coast keeping us on ground hold in DC for over an hour and a half. It was pretty miserable. Then I missed my connection in Chicago and ended up with a long layover for the next flight.

Chad and the girls met me at the airport with big hugs, and brought me home and put me to bed. I think they may have given me a sleeping potion. I went to sleep about 10pm Thursday night right after I got home and I literally did not get up until 1:30pm on Friday. I was only up for about an hour to get a little something to eat (and to fold a heaping laundry basket of clean clothes that I could not let wait) and then I was back to sleep until dinner time.

Luckily everyone has been into reading and so the house has been quiet and everyone has been piled up. Chad also is very easy going about holidays so our Father's Day plans are a big breakfast by Katt, reading and some robotics Legos that Chad got "for the girls" for Christmas that we have not broken out yet.

Katt was very sweet this morning. She set the table and made eggs, bacon and homemade corn bread (in a cast iron skillet) because she knows he likes corn bread and Chad's special coffee Margaret did most of the dishes, and I swear she had never opened the dishwasher before (or put anything in it). So that was an act of love as well. With a little coaching (and a lot of water - sorry California!), Margaret got the dishes done.

The swelling from the fluids is down already and I am feeling okay, mostly tired. I have some minor symptoms that my medical team in NIH think may be the start of shingles (oh yeah, just what I need). Hopefully they are wrong but will see. My neutrophils which fight bacteria are literally the best they have been in 4 years. My lymphocytes which fight viruses are still very, very low. I've been on meds to prevent shingles, and other viruses for a long time but may be stepping up the dosage.

Right now rest and enjoying time back home are my near term priorities. Assume no news is good news and hope everyone is having a Happy Father's Day!

I am a third of the way done and head back for Round 3 July 5.

Thursday, June 16, 2016

Apple Power

With this round of treatment the moxe has caused really bad flushing of my face and neck. It has to do with the cancer getting destroyed in my body and the reaction that is causing. It is not as bad in the first part of the day, but gets progressively worse, especially on the day post treatment.

Having some color in my face is not something I am a stranger to. I have long been a blusher. When I was in 5th grade, I was in a 5th/6th combination class and Mrs Campbell was my teacher. For some reason that is a year I remember really well. Mrs. Campbell constantly repeated "Patience is a virtue which we should all strive for in our daily lives" and she had a thing for owls which were all over the place.

One of the memorable parts of 5th grade was the lunch time conversation. We had assigned seats for lunch (boy, girl, boy, girl). Two of the boys by me were sixth graders and neighbors that I had known practically all my life. They enjoyed seeing how quickly the could make me turn bright read. They were quite good at it... and they called it Apple Power.  It was never done in a malicious way at all, They would make me laugh and there I would go. It got to the point they could just say Apple Power a certain way and I would light up.

You might think this is something that would change as I got older. However, several years into working post college, I was moving off a Pringles assignment and one of the gag gifts I was given was Original Pringles Red Can with the Mr. Pringles cheeks colored in red -- I was the original "red" can. I still had amazing powers to go from zero to beet red in surprisingly little time!! 

I did not have this side effect last time so not sure how long it will take to resolve, but this just looks like I have sunburn and does not hurt. If I had my choice I'd live with this longer and have some of the other side effects go away first. 

I've not felt great the last few days and have my fingers crossed I still get to fly home today. I have checked in for my flight, and will be crushed if the say no. I have been running a low grade fever (99-100) and felt, off and on, kind of like I have the flu. The team here does not seem too concerned so hopefully will be discharged and on my way to the airport later today.

Last time when I flew home, at the prodding of Chad and my parents, I set up wheelchair assistance. Thankfully I did because I think it would have done me in without the help getting through the airports. That is now set up as a fixture in my return home itinerary and hopefully will get to use it today!!

Tuesday, June 14, 2016

The Good with the Bad

I am an optimistic, and I generally think of myself as a positive person, so I am going to start with the good in this whole process.

The Good
- It continues to look like the treatment is working. My bone marrow was about 75% cancerous when I started treatment last month. It will be Oct/Nov before I have another bone marrow biopsy but based on my daily blood work the results are encouraging. My neutrophils are literally 4x what they were when I started treatment a month ago. I am not into normal territory but I am at levels I have rarely seen over the last 4 years (which means bring on the sushi!).

- I get to see my parents much more frequently than I would otherwise. I am in town for about 10 days every month for 6 months and then I will be back for follow-up every 6 months forever (which I will make sure and plan not to coincide with holidays when we'd plan to be back anyway) meaning more quality time with my parents than I would have otherwise.

- I have gotten to see good friends that live in the DC area that I don't get to see near enough. Thank you to those of you that have braved the NIH security process to bust me out for a little while, or bring me take out and hang with me here (more than once)!! Thanks too to those of you that have offered that I have had to take a rain check on because I was not feeling up to it.  I have four more rounds :)... so hopefully we will connect soon.

- If you have to be inpatient for awhile NIH is a good place to be. Don't get me wrong it is a hospital, and my room screams that. The small extras like the patient library, and a masseuse on staff (yes, I am treated to a 30 min massage each visit), and letting us wear our own clothes, and leave the hospital on pass some days make it easier....and I have to add my doctor. He just got back from vacation and came in (it is close to 5pm) post an international flight to check on his patients. He clearly cares intensely about both this trial and his patients on it.

The Bad
- I have to be gone from Chad and the girls for 10 days a month. It has felt very long to be both times so far and will be two months in total at of six.

- Taking any kind of toxic drug has side effects that you would rather be without and this one is no exception. I am thankful this time that so far my vision has not been affected despite the swelling around my eyes. The ortho-static blood pressure has put me on "high watch" here but hopefully will correct once I return home to normal fluid levels, sleeping patterns and activities.

- There are no guarantees that I will have a longer remission, and there are real risks that I have become increasingly aware of.

- I feel like I am going to float away drinking 9L of water a day. The line of water bottles early in the day is daunting.

- Last but not least having a roommate. Luckily I have not had a roommate for most of this cycle. I see why people I connected with online complained about them. Sometimes you want to feel miserable on your own, and if you are not drugged up staying asleep while your roommates nurse is in the room is not likely (and they have never been the same nurses on the same schedules).

Today, I am feeling much better than I did at this stage last cycle. I went out to lunch with my parents, and before that checked out the weekly NIH Farmer's Market. About this time Thursday I should be home so the countdown is on!

Sunday, June 12, 2016

Working for a Cure

Yesterday was thankfully uneventful. I got my second infusion and slept away most of the day. I did not pass out yesterday, or this morning when my standing blood pressure was taken. My eyes have started swelling up, but so far my vision is fine. With the shift from 6L to 9L in water a day I have gained 8 pounds in 2 days. It was about 15 pounds that I retained in water with cycle 1 and it came off in a matter of days after I got home and was put on the meds to flush the excess water out.

It was a big day at home yesterday, the Moss Ave Sale. Annually, our street is blocked off and people's yards are rented out to Antique dealers, crafts people, and food trucks. Then there is live music every few blocks. Even though we were not living in Peoria yet last year, Chad was here working, the girls and I came in town for the weekend and loved it. The girls have literally been working all year crafting for it making jewelry (earrings, necklaces, and cuff links) out of polymer clay, and in the case of the cuff links antique typewriter keys and bottle caps, too. They also had drinking glasses they had painted and old books they had carved out to make book boxes.

In total, they made $240. They want to donate this to LLS (Leukemia and Lymphoma Society). I'm so proud of how hard they worked. Chad said they did a great job talking to people when they came by, and it was a brutally hot day yesterday day.

My brother in law, John, is also helping fight for a cure. He is doing the PMC bike race to raise money for cancer research at the Dana-Farber Cancer Institute. Below is the link if anyone is looking for a great cause to support!

http://profile.pmc.org/JK0330

When you get admitted at NIH and sign the consent forms, under your name it asks for the signature of the "Patient / Research Participant". I have approached this as the best shot I have as at a more durable remission, and think of myself as a patient, but the longer this process goes on the more I have realized I am a Research Participant and it is different than a well established drug, or protocol. Hopefully what comes out of this trial is not just a better outcome for me, but also many others, through a new approved drug.

On many fronts, my family is working for a cure. Hopefully my children, and their children, will have far more effective options to treat cancer.







Friday, June 10, 2016

A little too much excitement today

Day 1 of cycle 2, and my first round of moxe, yesterday were very uneventful. The infusion was fast, and the only side effect was feeling very tired from the Benadryl to avoid an allergic reaction. I slept about as well as you can waking up every 2-2.5 hours, and was looking forward to a shower, visit with a friend from college, and then getting a pass to go out to lunch with my parents today. Unfortunately today turned into another one in bed, and lots of extra tests.

The saga of today started with the Physician's Assistant Technician (PAT) coming in at 5:15 am to get my weight and vitals. I went to the bathroom quickly, she got my weight and then we started on the vitals (blood pressure, temp, pulse ox). I get orthostatic vitals taken every morning, which means they are taken first when I am laying down, then when I am sitting up and then when I am standing.

Everything was fine until we got to the standing part. I thought I was dreaming. I opened my eyes and was laying upside down on the bed, and was not sure where I was. It took me a minute to realize I had fainted. I think it surprise the PAT too. It was after I said I fainted that she called for the nurses and help.

One of my favorite night nurses came in and looked at the blood pressure machine and said my pressure was 48 and that was not good. I reassured her my pressure was usually low thinking it was something like 80/48 vs my more normal 90/60. A little later realized it was 48/37... which is very not normal for anyone.

They had me lay down then we tried the orthostatic blood pressure again. By the time I sat up I remember saying I felt nauseous then down I went again. The nurse quickly elevated my feet, and called for fluids. Then my heart rate was also low, and I looked kind of gray so she called Code Blue on me. 

Luckily another nurse had warned me that Codes are called here more frequently then for someone's heart stopping, but kind of freaky to hear that happening. Two doctors, a lot of machinery and a few more nurses arrived. They did an EKG and as soon as it was clear I was stable they started asking why I was here.

My nurse explained I was on the moxetumomab trial... both doctors quickly said I have no idea what that drug is. (This is hard to get use to being on a drug so new that most doctors don't know about it.) The consensus was I was low fluids in my veins despite my 6-7L of water in the last 24 hours. 

This is the first (and second) time I have ever fainted, but two of my sisters have a history of fainting from standing up too quickly, getting their ears pierced, etc. So I have seen them faint a lot, and it sounds like what the nurse described (e.g., eyes rolling back in my head) was what I had seen over the years with my sisters. Luckily both times I passed out on the bed and did not hit my head on anything hard.

After many tests this morning, and stepped up surveillance of the NIH team, I am feeling much better.  My doctor is out of the country on vacation but was called, and later in the morning he called me. We agreed I need to target for 9L of fluid and just deal with the facial swelling, and side effects it causes. My eyes are watery which was the first sign of the swelling so hopefully my eyes are not swollen shut tomorrow am!!

Chad, and my parents, convinced me on the way home for Cycle 1 to do wheelchair assistance. It was key to me making it home without collapsing. I was hoping I could make my way between gates by myself for this cycle, but it is looking like more wheelchair assistance is in my future.

Hoping for a few boring, non-eventful days here at the hospital....





Wednesday, June 8, 2016

Round 2 off to a good start

What constitutes a good start to cancer treatment? Well, today it was the fact my blood work was better than expected. The key markers were up across the board. It looks like the moxe is working which is great news. I asked if there was any chance it would work so well I would not need the full 6 cycles, and the answer was negative. You only get an early out for complications.

Otherwise today was about as expected, they took a lot of blood. I had not one, but two EKGs. Getting a PICC and IV sound like they will not take too long, but it was pushing 2 hours by the time they were in. The person who did it, I think did a better job than the one I got last time but he was working solo and every step took time. He used an ultrasound machine to find the right vein, then a needle goes in, followed by a wire, followed the everything else. Then you have to wait for a portable Xray machine to come and do a chest Xray and confirm it is in the right place. Basically today we went from department to department checking off what I needed to get done ending up with settling in my digs for the next week plus.

We are going to try and have me leave looking more like how I arrived. One of the trial nurse's recommended I go lighter on the fluids and only target 6L. My doctor said, well let's say 8L of water a day. He seemed proud to have someone he did not have to prod to drink water, so we settled on a range of 6-8L Hopefully we can find the right mix of meds and fluids to avoid all the swelling around my eyes I had last time. 

The low of my day is that I have a roommate. While she has been awake her TV has been on constantly, but she took a nap and I was thrilled to hear that she turned it off. Hopefully the set up will be manageable!!

The first day of the infusion is tomorrow. Fingers crossed it will be like last time around and I'll be tired from the pre-meds, but otherwise will be a non-event.


Sunday, May 29, 2016

Irony

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.