Thursday, August 25, 2016


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!