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!!

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.

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!!

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!

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.

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....

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.