This is a blog intended to keep family and friends posted about my progress as I undergo a stem cell transplant to fight my relapse of Hodgkin's Lymphoma.

Sunday, July 29, 2007

Please allow me a moment to vent!

If you've tuned in today, you will hear me bitch just a bit! Turns out the "great plan" to get Long Term Disability insurance isn't really panning out too well after all. Here's last chemo happened on October 3rd. I started working January 2nd, any my first day of coverage for LTD began on March 1st. All good, until you read the part that says any illness for which you've recieved treatment for within 6 months of the effective start date for the insurance is considered pre-existing. I'm no math whiz, but I come up with 5 months from my last tx. to effect start date of coverage. Long story short, I'm sh*t out of luck.

Looks like I'll be standing in line at the Social Security office, hoping I'll get approved for their disability program. It could take about 6 months for me to get approved through them, although "approval" really shouldn't be a problem since I won't be allowed to work--ya know, due to having NO IMMUNE SYSTEM!!! Just sucks that we will be living off of only Scott's income until I can at least get disability. Oh yeah, did I mention that Scott was recently diagnosed with carpal tunnel syndrome and is supposed to be having surgery for that?! That's right, the news just keeps getting better! Needless to say, he will not do it now--so please keep good thoughts that Scott will not become more seriously injured or require the surgery in order to continue working.

Okay, bitchfest over....

Without going back and looking at what I've posted previously, I can't exactly remember what I've said. So, let me just say that this week I will be completing my first cycle of ICE chemotherapy. I get three weeks "off", then my second round of ICE. Another three weeks off, then re-staging testing to determine how well the chemo did at kicking cancer's butt, then on to the stem cell transplant. I will discuss that in more detail later. I know the general info about it, but won't be fully informed until at least Tuesday, when I meet my transplant team. Geez, as hard as it's seemed getting the info, you'd think this was all classified information--and that I'm apparently not on a "need to know" basis!!!!

Okay, I'm really done crabbin' now!!!

Love to all!!!

Friday, July 27, 2007

Here's the plan so far...

I was off getting work things squared away when Scott took a phone call from the hospital. Here's the plan--until I call them back and get more specifics this will have to do. On Monday, I arrive at 11:30 to get checked in and prepped for surgery, and my lovely port will be re-inserted at approximately 1:00pm. I'm free to go after I get done in recovery, but have to present myself again on Tuesday to speak with a social worker. I can't imagine my head would be at all screwed up by this whole mess!!!! After meeting with the social worker, I speak with my oncologist, then it's off to the first infusion. I guess that takes about an hour, then I'm free to go again...go where, I'm not sure, because I have to admit myself to the hospital on Wednesday at noon for the next infusion of chemo. I guess that takes several hours and is pretty harsh, because the earliest I will be discharge will be Friday. I am not sure if that constitutes "1 round" of ICE, and I don't know how much recovery time I get before getting slammed again.

So, I haven't been at the new job long enough for FMLA to kick in, which would only give me 12 weeks unpaid leave anyway. When I get back from Omaha on this first trip, I will begin looking into Social Security Disability, since I pretty much know I should be approved for that. Also, I wisely took out long term disability coverage when I started this job, so that should kick in after 90 days off the job, assuming I did not have to be employed for a certain period of time before being able to use it. Keep your fingers crossed...the rest of my day is filled with getting pre-certified to be hospitalized and making any other plans I think of!

Regarding my tattoo--I am trying hard to get my appointment pushed up to Monday evening--after getting the port, but before any chemo. Not having much luck with that. The guy at the front desk that I spoke to said she's completely full. I left a message for her to call me back herself, so we will see if the "cancer card" can buy me some preferential treatment. I have given a lot of thought to postponing treatment, and, although I'm not 100% comfortable with how fast things are going, I will likely never be feeling great about doing any of this! I would never forgive myself if my chance for remission (dare we say, "cure") is compromised because I selfishly decided to get a tattoo instead of chemo. Know what I mean? It sucks, but I will EVENTUALLY get that tattoo!!! You can all count on that!!

To quote my friend, Mary, "I don't recommend getting cancer. And I highly recommend not getting cancer a second time." At the very least, it's a MAJOR inconvenience!!! You'll know more when I know more. Love you guys, and love all the comments I've gotten from all of you! Now some of my Hodge friends will "meet" my family (mom and sister, Crystal, who have posted comments), friends, and my best friend of 25 years (Nik).

Thursday, July 26, 2007

Big news--the Hodge has returned...

I'm setting up this blog as a way of being able to keep everyone updated on my progress. As most of you who stumble across this blog know, I just found out today that I have relapsed with Hodgkin's Lymphoma.

I was originally diagnosed with Stage IIA Nodular Schlerosing Hodgkin's Lymphoma on April 18th, 2006. After participating in a clinical trial, consisting of six months of AVG chemotherapy, I enjoyed six months of remission bliss before starting to notice the swelling of the lymphnode on the right side of my neck. I freaked and went to my six month check-up a month early...nothing showed up on the CT scan, so I made the decision to go on with my life, knowing that relapse could happen, but I wasn't going to let the fear of it run my life.

I just celebrated my 35th birthday on Saturday, and had my 9 month check up and scan on the following Monday...needless to say, everything went downhill from there. Enlarged nodes showed up on my scan, so a biopsy was scheduled for the following day. I just got the call tonight that the Hodge is back, so now I am facing a stem cell transplant procedure. As of this moment, my oncologist wants me in Omaha on Monday morning to have my port re-inserted, with my new chemo regimine follow on Tuesday. My plan was to get a tattoo I guess we will see who is more stubborn!! More news to follow as soon as I know anything.