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


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!