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!

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!!!