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Fishing expedition and Moffitt

1/21/2015

Monday was such a gorgeous day here! Nicole is at Rendezvous this whole week, which is an 1800's reenactment camp about an hour from here, with one of her best friend's family and 5 other girls. I was going to join her on Monday and spend the night and come home Tuesday. I called her friend's mom just as I was getting ready to leave to see if she needed anything and she said, "Well, you might not want to come". Turns out all the girls were exposed to another girl (sharing combs and doing each other's hair) that had lice. Bummer! I was considering still going but finally made the hard decision not to go. The boys were all going out on a friend's boat, so I called Tim and let him know I wasn't going to Rendezvous. They had just pulled away from the dock and he suggested they just come and get me since we live not 10 minutes from a public dock. So I drove and met them and hopped on board. What a great day we had! We ended up in a school of hammerhead sharks and the 3 boys and myself each caught a baby one (thankfully we didn't see any daddy ones!). Noah caught the first one, as Tim predicted, so you can see his catch to the left here. Below is a proud Nathan with his prize while Nicholas looks on:

Wow - I had added a whole section here about my Moffitt experience and after I saved this post I noticed it was gone! I'm too tired to redo the whole thing - suffice it to say today was a much better experience and they were actually able to instill the chemo into my bladder with no problems. The only side effect that I'm having out of the typical ones of , “Urgency, frequency, burning or pain with urination; unable to hold urine; blood tinged urine; fatigue; nausea and/or vomiting; joint aches; low grade temperature; shaking chills; skin rash” is fatigue, so that's not too bad. 1 down 5 to go! A friend of ours who drives a limo brought us a meal tonight, and the boys were thrilled to get in and check out the inside of a limo! And the meal was great, too! Thank you to all of you for your comments and prayers and encouragement - it all means so much to me! Blessings to all!

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The latest on my cancer journey...

1/15/2015

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I apologize because I just realized today my last update regarding my cancer journey was a month ago (12/15) and I had said I would update here when I knew more and I didn't So please forgive my negligence! I went ahead and scheduled for my chemo to start yesterday at Moffitt Cancer Center in Tampa. To make a long story short, it was an over 3 hour traumatic experience that began with long delays and apologies (that was not the traumatic part) and ended with several catheter attempts (never successful) and tears and pushing and prodding my cancer bladder and finally me walking out of there without the chemo. I'll tell you what - I didn't want to go to Moffitt in the first place and I DEFINITELY do NOT want to go back. We did talk to a patient advocate today at Moffitt, and now my main goal with them is ensuring they don't charge me for yesterday's fiasco.

It has galvanized me to find another place. The chemo drug they use for bladder cancer, BCG, is in short supply, and Moffitt didn't even have enough to complete my 6 dosages with them, but they said they are hoping to get another shipment in by the end of September. So I called around, and found that Lakeland Cancer Center has some BCG and enough to do my 6 dosages, but I would have to completely have all my records transferred to them and once they were, I could then make an appointment with one of their doctors, and after that I could try to get on their schedule for treatment. But the new patient coordinator basically discouraged me from even attempting this as it would evidently be a long process. I called the manufacturer of the chemo to find out where they send it to in this area to try to find another facility, but they send it to wholesalers, so they don't have direct contact with who orders it from the wholesalers. They did tell me the same thing Moffitt said, in that they are shipping orders with the latest dosages out mid to late January. So I called Tampa General (the facility I wanted to go in the first place) to find out if they have pending orders for the drug, and they do. I spoke with the lady who would be administering my treatment and she was AWESOME, having had bladder cancer herself she knows exactly what I'm going through. She said they have been told as well that they should be receiving their BCG supply mid to late January. So I called my doctor's office and asked them to please switch my chemo orders to Tampa General. The nurse said my doctor is out of the country but should be back soon and so she will plan on trying to reach him early next week (even though he's not due back in the office that soon). She is concerned that Tampa General will not receive the drug as early as they are anticipating and will only delay my treatment, but I think that is a danger as well at Moffitt since they are waiting on more BCG, too.

So that is that! I have to believe there is a reason things were so botched up yesterday - maybe the dosage was tainted, or maybe it was what I needed to get me going elsewhere. We will see how the rest of this story unfolds.

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Tim & Jodie

Tim and Jodie have been married since Nov. 5, 1988. Tim is a retired Licensed Marriage and Family Therapist and retired city of Tampa Firefighter. Jodie is a happily laid off IBM/AT&T 21 yr veteran employee. So I guess you can say they're both retired, but still super busy! They have four wonderful children: triplets Nathan, Nicole, and Noah born 11/16/97 and Nicholas born 5/16/99. Nathan is at Trinity College, Noah is at Florida Polytechnic University, and Nicole is at USF. Nicholas is an EDM (electronic dance music) creator and hoping to make a living from that! We love and are so proud of our kids!

Fishing expedition and Moffitt

The latest on my cancer journey...

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