Chemo Rocks

The new family vehicle!!!

How cool is that?

Katherine lost her first tooth!

I sent an email to a good friend the other day explaining why I have been out of touch the last few weeks. When things are bad around here, I sometimes just don't have the energy to talk/write about what is happening. Of course bad things turn around, and then I am feeling so good that I just don't feel like talking/writing about what is happening! I guess I am just tired of the whole mess. Darn it is good to start feeling better, though! Chemo rocks.


My doctors are finally agreeing with me that I am getting better. I had chemo last Friday. I am so grateful to everyone who continues to wrap me in my blue blanket of love. Positive energy is exactly what I need. In fact, I stayed on top of the nausea this time by taking the meds before I felt sick instead of after- huge improvement. I am tolerating the chemo very well, and thankfully for me, I actually feel less ill than I did on some of the other meds I have taken over the last 14 years. The fatigue is pretty insane, but since the MG is better, I am doing fine with that. It is all relative. I am certainly not saying chemo is a walk in the park, but I have gotten a lot of perspective on how truly sick I have been in the past.


The plan is to stick to the 2 IVIg treatments every 2 weeks for a month and then reassess. We don't want to push too hard and then end up back peddling. Both Dr. Logan (neurology) and Dr. Buff (oncology/hematology) see my improvements and are very pleased with how I am tolerating the chemotherapy. The biggest issue is when my blood counts drop- they really bottom out! So I have to be extremely careful 2 weeks out of the month (and just plain old careful the other 2 weeks)! I can't wait until it is safe for me to eat salad and fresh fruit again- the risk of bacteria is too big for me right now.


Last Thursday, Dr. Logan's medical coordinator called me to confirm my appointment on Friday. She was all freaked out because I was very out of breath when I answered the phone. I could hear in her voice- panic!!! She said, "oh, claire are you okay?" I was confused for a second and then said, "Oh! I am fine just finishing my 45 minutes on the stairmaster"! I guess I am getting better, huh? As I said, chemo rocks!!!

My Blue Dog

I mentioned in the last blog entry that the kids and I went up to visit my folks last week. While we were getting ready to leave, I was packing up the car and making lunches and a dinner to drop off at base for Jason. The kids were out on the driveway playing, and I was listening and checking them constantly. Here I am at the stove, in the middle of my Swedish meatballs and I hear them laughing away. My thoughts immediately went to how wonderful it is for them to have each other, and "thank God the two of them are getting along- this second anyway"! They were giggling and playing with chalk and the hose. And little Maggie was sitting out there enjoying the warm driveway on her naked belly.

After a few minutes, they come trooping inside holding their hands up in the air like 2 surgeons. "Mommy, we need to wash our hands". If you wet chalk enough, it becomes like paste/paint and makes really bright marks on the driveway (or the house or car, by the way). I was giggling right along with them, happy to see them so full of joy. Into the bathroom they marched and while they are washing their hands, Katherine says, "you think this is bad, wait until you see Maggie!"..... I was thinking, "wait, WHAT?" LOL... I rushed out the door to check on my poor pug. Well, as you might have already guessed- we had one very blue dog. Blue face, blue tail, blue ears, even a blue belly. One very blue dog. There was my poor little blue dog looking at me with those huge pug eyes. You could practically hear her whimpering, "maaaaamaaaaaaaa, they made me BLUE. Please, DO something." It took 4 shampoos to get it all off. I was laughing so hard the whole time my stomach actually hurt the next day.

If anyone ever questions the sweet, calm nature of Maggie, I will be reminding them that the dog just sat there while my silly mischievous children painted her entire body blue. They rubbed their hands in the "paint" and then just rubbed it all over her, so it got all the way down to her little skin! I am still laughing about it. One day I will be telling my grandchildren this story- give them some ideas! Being a grandparent is going to be the BEST!

Yup. The dog is blue. The picture doesn't do it justice. Maggie was hiding the part that was the bluest. I couldn't get her to turn around for me. I guess she was embarrassed.

Katherine in my wig.

Thomas in Katherine's favorite hat.

What can I say... we are a house full of silly willies.

Thank you all for continuing to keep us in your thoughts and prayers. Thomas is undergoing some tests to try to find the source for these high fevers he has been getting for the past 2 months (over 106 at times). And I have been doing okay- heck, I am always doing okay- even when I am in ICU. I have the best family a girl could ask for and that is what matters the most. Think positive and God Bless.

I want to go to the grocery store

On Tuesday, the kids and I went up to my parent's house in Wolfeboro for a sleepover. It was so much fun to be able to go up for the day/night rather than plan for at least a week like we did when they lived in PA. I cried on the way up because I am so happy that they are so close now. Yesterday while we were there, Thomas spiked another high fever. This is the third time in 5 weeks that this has happened, so I have a call into the pediatrician.

The plan for the day was for a morning playdate, and then a trip to the hospital for me for my weekly bloodwork. Obviously the I couldn't bring poor Thomas to the oncology unit, since so many people are immunosuppressed. So I was able to change the appointment to first thing in the morning because they had a cancellation (wasn't that lucky?) and my wonderful husband was able to re-arrange his schedule to stay home in the morning. So I am thinking that I will go to the hospital and then do a quick run at the grocery store while I am flying solo.

Well, my counts put a big stop to that. At the moment, my WBC count is only 1.3 and I am extremely neutropenic.

From Wikipedia: Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophil granulocytes (a type of white blood cell). Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

So I won't be going anywhere until the counts start coming back up. This is the way that I should be responding to the chemo, so it is good news. It is like a roller coaster. I get the chemo and then the counts come down (hopefully no lower than they are now) and then they start to come back up and we hit them again with the chemo. Doing this is what should eventually "trick" my body into an infant state and allow it to rebuild without the antibodies that attack my muscles (the Myasthenia).

As I was leaving the hospital, I grabbed a mask, still intent on heading to the grocery store. I mean hey, it was only 9 am and it would probably be empty. I could wear the mask, wipe the cart with anti-bacterial wipes and scrub myself with hand sanitizer after I left. Upon reflection, I decided against the store! lol. Can't you just hear it? "Kids, Mommy is in ICU because she really wanted to get creamer for Daddy's coffee and fruit snacks for you guys." It just didn't seem to be the right path to follow :) Instead, I will head home to my known entity of a sick little boy. Since I have already been exposed to whatever it is that he has, I am not going to worry about hugging my baby boy. The mask will go to good use for cuddle time today.

Still, I really wanted to go to the grocery store. I am sure once this is over I will be right back to, "darn, I hate going to the grocery store!". Won't that be wonderful? For now Jason will have the honor of buying raw chicken.