This month has been a whirlwind to say the least. I'll hit the highlights then go into detail: we moved into our home, my best friend donated her hair in my honor and was diagnosed with breast cancer, I had an appointment with my new Dr. at Johns Hopkins, my husband went part time at work, and here we are, IVIG again.
Moving:
We had a great weekend of moving. We rented a Uhaul truck for 2 days. One day we moved all our things out of my parents house. The next day, we moved all our things out of our large storage unit we had filled when we moved out of our town house. We had so much help from family and friends. From kid watching, moving refrigerator food, moving boxes and furniture, it was a fun moving day. We are getting settled and enjoying our yard and room to play.
Hair Donation:
When I lost all my hair, Jenn wanted to shave her head with me. At the time, her family was in the process of adopting again and would be meeting their new son in the months to follow. As honored as I felt that she would go bald with me, we decided that her donating her hair was a better use of her awesome hair. So, we made it a special date. We went to her stylist, and then went out to dinner to celebrate. At dinner, she told me that she had found a lump but wasn't worried about it. That week she got into see the Dr. for an exam.
It's cancer.
Never words you want to hear from anyone you love. My best friend since 3rd grade, has triple negative breast cancer. A very aggressive form of cancer. The team of Dr.'s acted quickly. From the time of diagnosis to the time treatment started, was less than a month. She is now the one undergoing chemo and all the side effects that go with it. Silver linings: I kept my favorite chemo caps and wig, I was able to prepare her a little for what to expect, I know how she feels...what it feels like to have drugs in your body that make you feel like death. She is strong. She is Wonder Woman. I love her dearly and am sad for the road that she must travel.
Hopkins:
Northwestern helped me make an appointment with them back in December and the earliest I could get was late March. I got a call around 3:00 pm from my new neurologists office asking if I could come in the next day at 9:00 am for a cancelled appointment. I made childcare arrangements and took the appointment. I wasn't prepared for being there from 8:30 until 3:00. I met my new Dr. went over my history and he drew a timeline of my CIDP. I was with him for an hour. He asked if I could stay for testing (EMG, NCV and blood work). I stayed and got all the testing done. Before I left the testing room, the technician told me that the Dr. wanted to see me again before I left. I go back to his office, and he calls me in with another CIDP Dr. from Europe. He looked over my test results and wanted me to know that they looked nearly normal now. That we caught the relapse quickly before damage had been done. Good news! He also said he wants me to continue my monthly IVIG (every 4 weeks instead of 3) for the next 3 months. In May, I go back to see him and at that appointment, he hopes to switch me to sub q injections of immuno-globulin. The side effects with sub q are much less than with IVIG. I will just have to get used to giving myself 5-6 shots every 3-4 days. So, here we go and continue on the CIDP management. In June, I'll go back to Chicago for my yearly follow up. While I know I'm not in remission, it's important for me to go and continue the study so Dr. Burt can use my data and figure out why the transplant didn't work for me.
Hubby Goes Part Time:
Last Fall, we were seeing the need for Jesse to be home more to help our boys. What we've learned with my being sick, trauma happens, and it takes time to heal from it. In order to qualify for our loan, we needed Jesse to stay full time, even though we can afford for him to be part time. So, we had to wait until we closed before changing anything with his schedule. He started going part time this week and it's been glorious. It's freed me up to work more and for us to have more time together as a family. Both of us working full time, on opposite schedules wasn't conducive to any sort of healthy home environment. As good as this is for our family, there are some who might see this as Jesse being weak, not providing for his family...blah blah blah. I will say this once, if you have that opinion you may go take a very long walk away from our family. We don't want or need the negativity that some people have of stereotypical gender roles. We are and will continue to keep our families safety and well being at the for front of our lives. We have never been ones to take the gender roles we are "supposed" to have. So, we march on.
Birthdays:
It's birthday season in our family. Daniel just celebrated his 3rd birthday! He's 3!!! Woah. Next up is me then four days later is David then 4 weeks later is Jesse. It's a crazy house on the late Winter early Spring. Add everything else and it's just insane.
IVIG:
Yesterday, I had my IVIG treatment. Same old same old. Makes me feel awful. So, here I sit, with my steroids, zofran & Tylenol, hoping that I can be a mom again when the boys come home tonight after dinner.
