What's Been Happening

I know its been over a week since my last post, but I have been one very busy girl!  My mom and I are all settled into our temporary home.  Its a cute little apartment that has everything we need (except for groceries and our clothes).  Its also fabulous that it has a shuttle to the hospital.  If we want to go anywhere other than MD Anderson though we have to take a cab, and they are not cheap!  So we have tried to limit our cab rides.  Here's a few pics of our temporary home :o)

Our kitchen

The living room

The dining area and door to our balcony

Without having a car here we've had to find some alternatives for getting things we need.  Amazingly, we found a grocery store that delivers!  You place your order online and then pick a delivery date.  Even better is that they were having a special we were able to get that means we'll have free delivery for the entire month of October.

As far as the medical aspect of our stay goes, I had my lumbar puncture (spinal tap) on Thursday and it wasn't bad.  I barely felt a thing, thank goodness!  I was pretty worried about it.  Unfortunately, one possible side effect of it is back pain, and that just happens to be the only side effect I'm experiencing, but add that to my current back pain and I had a pretty miserable time.

I had 2 days this past week where my mom and I spent more than 13 hours at the hospital.  The first was Tuesday.  My blood counts were really low (due to the cancer being in bone marrow again) and I had to have a blood transfusion.  We got to the hospital that day at 8am and left at 9:30pm.  I started my chemo this past Friday and that was our second extremely long day (7:45am-9:15pm).  My third drug was finally approved thanks to Dr Z changing the wording in my diagnosis just slightly.  I will have chemo each Friday (only 1 day a week) for 3 weeks and then have the 4th week off.  Then the cycle repeats.  There is no set time for how long I will get this chemo.  Since its a clinical trial, they are still working on finding correct dosage and length of administration.  The hope is that with cooperation from the Cleveland Clinic I will be able to come home and receive treatments there after my first 2 cycles.  I would still need to fly down here once a month to see Dr Z, but that would mean I could be with my kiddos rather than staying here in an apartment.

I was excited to learn that the drugs I am getting this time (although still very strong) are less harsh than the ones I got last winter.  They have fewer side effects (I haven't had any so far...fingers crossed!), and the side effects they have are not as severe as the ones from the drugs I had before (no risk for hearing loss, hair loss should be minimal, nausea is less severe, etc...).

I am still doing testing for my eye sight.  I see one more specialist tomorrow ( a retina specialist) and then hopefully will finally have a definitive diagnosis on my eyes and a plan for treatment.  Dr S has been working with a doctor at the Mayo Clinic for my case.  They apparently found a certain antibody in my blood that is caused by cancer and it affects the eyes (this is my understanding so far) and this particular doctor is the one who discovered this antibody so he's an expert.  I am hoping to know more when I meet with Dr S on Thursday.

This week is another busy week with appointments every day except Wednesday.  I feel great after my first round of chemo and I am praying that continues!  I'll keep everyone updated.  :o)