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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!
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.
Merry Christmas! This picture is from our church's Christmas eve service we went to yesterday. And now here is a video we would like to share with you. Yes, it is one of those 'elf yourself' ones, and, by golly, they can only have up to 5 people in the video. So, since I'm the one who put it together, I conveniently left myself out. :-) But enjoy seeing the other 5 members of the family! Hope everyone is having a great day!
#BestBirthdayEver! I don't even know what that hashtag stuff is, but it seemed like the thing to say, because it really was a great birthday! It started with sleeping in until like 8:30am! And then my wonderful husband made me (and the kids) blueberry pancakes - the first breakfast I've had in over 3 months! I forgot to get pictures of that because I was too busy devouring it (with almond butter, sliced bananas, some raspberries, and pure maple syrup)! Oh my! Then I took a shower and got ready and Tim went and picked up Nicholas from school during his lunch period and then we all went to Koizy's - this AMAZING Japanese restaurant in Brandon. They sat us down at a regular table, but Nathan said he had read that they had another room where they could cook it in front of you, so we asked the waitress about it, and she said we could do that and it didn't cost any more! I'm SO thankful Nathan knew to even ask about that - we had the BEST time! We had that whole room all to ourselves! Our cook, Ling, was so funny - he threw small rice/egg balls at us as we each tried to catch them in our mouths. Tim and I were the champs at it - we'll just have to give the kids some more practice at home...outside! I feel badly for the clean up crew that came in after us to clean the floors! And when Ling found out it was my birthday he brought me a silly balloon hat with a big red bow in the front! And at the end they brought out a scoop of ice cream with a candle in it and sang and clapped a birthday song for me. Anyway, I still can't believe it is all you can eat for 1 price because we put the food away! The sushi was amazing and the hibachi entrees were deliciouso! Here are pictures from our time there:
The triplets had to go to a bill editing Youth in Government function right after lunch, so Tim and Nicholas took me shopping at Kohl's and Tim picked out a really cute outfit for me! Shortly after we got home there was a ring at the doorbell and some beautiful flowers were on our doorstep, and the card said it was from God! Didn't know He was into the flower sending business, but they are beautiful! Check out the outfit and the flowers:
We ended the day watching several episodes of Psych - too funny! We never did eat dinner because we were all still stuffed from lunch! I had several calls and texts and even a couple of emails wishing me a Happy Birthday - I really think it was one of my best birthday's ever!
One thing I wanted to mention was that Nicholas had a band concert on Monday night, so here are a couple pictures we snapped of that night - doesn't he look quite dapper?
I hope everyone is enjoying the season and not getting too caught up in the rat race! Thanks to all who wished me a Happy Birthday today! I just have to say, your wish came true!
Well, my doctor called this morning. He said I still have cancer in my bladder. I was trying to understand the extent of it, but he said it was too difficult to say. I asked if each biopsy he did was tested separately or all together, and he said separately. So I asked if all tested positive or just one or what, and he said it was too difficult to say. ?? I believe he did 6 biopsies, so when his nurse calls back I will be asking for a copy of the report. His recommendation is for BCG chemo treatment, but it cannot start until after January because it could get in my system and cause tuberculosis if I'm not healed from the biopsy. This is the kicker about all this because had I done chemo in October it would have been completely covered. Due to the 'affordable care act' our insurance is increasing from $300+ a month to $1,000+ a month, and that is just to keep our current $10,400 deductible plan (which we met for 2014 but would be starting again fresh in 2015). So, we are really between a rock and hard place. We were looking at Medi-share and the other 'share' health care plans, but they won't cover pre-existing conditions (they were somehow grandfathered in since obamacare requires coverage of pre-existing conditions). So we have a lot to think about and process over the next month. I kind of wish I could have done the chemo in October, but I made the appointments and then couldn't bring myself to go, cancelling each one every time it came up (not cancelling all at once) - so I can't live in the world of would've could've should've's. Plus, as my friend, Sheryl said to me (she happened to text me minutes after the doctor called and asked if I'd heard anything), I have given my body 3 months of solid healthy wonderful food intake and my body is so much stronger now to handle the chemo. Her words, "Money is money and that's not what is most important" and she's right. Plus - I am AMAZED at how well I have healed from the biopsy just 5 days ago! I have needed no pain medication and have been feeling great! It's incredible! So - that's the latest. I will update here when I know more.
On my last update I only had time to document our Thanksgiving adventures - but I left out other fun times we had earlier in the month of November. For example, on the 16th we celebrated the triplets 17th birthday! Can you believe it? We had 20+ rowdy teenagers in our house for a few hours on their birthday, and they all had a blast! Here are a couple of pictures from that time:
Earlier in the month than that, Tim and I celebrated our 26th anniversary on the 5th! Woohoo!
Well, I believe that catches us up for the month of November. Now - onto December! We went camping with a group of homeschoolers (wait until you see how big the group was!) December 4th - 6th. We had purchased an 8 person tent a month or so ago at a garage sale for this occasion, and so the triplets and I headed up there around noonish on that Thursday and proceeded to set up the tent ourselves. Thank God for some of the others who knew what to do, because only Tim knew how to set it up and he wasn't there yet. We finally got it set up and then I went and helped with dinner. Stew was on the menu, and everyone brought their assigned items to throw into the pot. I ended up with the job of cutting the meat, which was kind of ironic since I'm a vegetarian! :-) Anyway, when Tim got there with Nicholas he looked inside the tent and then looked back at our van and made an executive decision - he and I were NOT sleeping in that tent. An 8 person tent is really a 4 person tent, especially when you have teenagers! So he put the seats down in the van, put an air mattress down, threw in a couple of sleeping bags, and voila - our own cozy 'tent'. The weather could not have been nicer - cool evenings and then upper 70's during the day - what more could you ask for? And the families we were with were such a joy to spend time with! Well, enough of my ramblings - here are some of the pictures!
The day after we got back from camping the kids went thrift store shopping along with Nicole's friend, Rachel, to find wacky tacky Christmas outfits for their youth's Christmas party. I think they accomplished their goal! In case you can't read Nicholas' hat it says, "Dear Santa, I can explain". :-)
While the kids were out shopping, Tim and I got out the Christmas decorations and started decorating the house! I dragged out our secondary Christmas tree that we bought at a yard sale like 5 years ago for $5, and I have to admit, I believe it has seen it's last days. However, our cat seems to enjoy it immensely. Maybe it would be good for a Charlie Brown Christmas play somewhere? ahah! Nah - we just need to trash it, don't you think?!
Once we got our other primary tree up, our cat decided to show us what she wanted to give us for Christmas - herself! If only she knew how to tie a bow around her neck!
Then this past Tuesday my best friend from college who lives in Orlando and I met half way for lunch. We had such a nice time reconnecting!! We both needed that break so badly! She hasn't changed a BIT from when we were in college! Her birthday is November 17th and mine is a month and a day after that, so this was a perfect time to celebrate each other's birthdays!
That was Tuesday. Then the big day came - 2 days ago - Wednesday - the biopsy of my bladder. We won't know anything for at least a week and I hate waiting! I've been a very good girl and resting as much as possible, and therefore, so far, this has been the best recovery of the previous 2 biopsies I've had this year! I did go to our church's benevolence Christmas Coffee with Nicole last night, and I only have a dark picture of us to show for it. But other than that, I've basically been in bed. And I haven't had to take any of the medications they prescribed for me because I really haven't had any pain - so that's great! However, the last biopsy took a month to heal, and I remember thinking I was pain free for a little bit but then the pain would hit again, so I'm guessing I'm not out of the woods yet - but am enjoying it while it lasts. Who knows, maybe I won't have any pain at all! Anyway, here's a picture of Nicole and me, and now I think everything is up to date on this blog!!
I hope everyone had a great holiday!! We left Friday over a week ago and drove up to the Cincinnati area to visit Tim's family. His sister gave us tickets to an observatory in Cincinnati, so after we got in Saturday evening we grabbed a quick dinner and went to the observatory. Unfortunately, it was cloudy, so no looking through the telescope ourselves, but the lecturer was engaging and interesting, and the tour of the place was a lot of fun! Almost all the pictures we took that night were too dark (go figure) but here's one of a few of us moving the opening of the dome of the observatory around:
The next morning we went to Tim's old church and sat with the guy who led Tim to Christ when he was 16 years old. It was so great to see Bob again! Later that afternoon we went to Tim's niece's house for a mini-family reunion with Tim's sister and brother-in-law, his niece and husband and 2 kids, and his nephew and wife and 2 kids, and his brother Mark. It was a taco fiesta, and such a great time! I'm waiting for his niece to send us the shot of the gang she took with her awesome camera, so stay tuned as I will try to remember to post that!
Monday we juiced, which was a tad, shall we say, interesting, in the cramped kitchen of a Residence Inn - but we did it and were glad to have that done! We took the kids for dinner at one of Tim's favorite childhood restaurants - Skyline Chili - with his brother, Mark. Here's a picture of that time:
The next morning we packed it up and headed to North Carolina, and our friends, the Hoffmans! As always, they welcomed us with opened arms and opened hearts! We had a lovely Thanksgiving feast on Turkey Day, and then a bonfire with s'mores!, and then yesterday we drove up to a Harper's Creek where we hiked up to a beautiful waterfall! Unfortunately, I didn't get any pictures of the actual waterfall, but we did snap a few hiking pictures that I'll share. And then we went to a barn dance, where we cut a rug and a half! It was a blast. We left his morning with hugs and kisses, and headed straight to the Landmark Restaurant in Charlotte that Noah had seen on the Diners, Drive-In's and Dives TV show months ago and had been begging us to go the next time we saw the Hoffman's. They really did have amazing service and incredible food - check out the picture of that below. We're about to pull into our driveway and, although we thoroughly enjoyed our time away, I have to say, like Dorothy, there's no place like home! Enjoy the pictures!
Nathan and Nicole have been such troupers lately - with Nathan helping to chauffeur kids around and Nicole helping me make meals and both of them helping me juice and being amazingly helpful in every way - we just wanted to do something special for them. So yesterday, while Nicholas was in school and Noah was at work, we took them to an Archery Range and the 4 of us had a blast! Since it was a Friday morning we had the range completely to ourselves! And finally I have some pictures to post! Here they are:
We took them to Wendy's afterwards for salads, and I just hope they were able to feel how much we appreciate them!
Today was another busy Saturday, but unlike last Saturday where I handled the busyness well, I did not handle today's busyness well at all - I let stress rule me today. Argh! I took a break around 4pm and sat in the garage with the door open and the cool breeze blowing in while I drank some carrot juice and Nathan walked in after mowing his assigned portion of the yard. We started talking about things he was dealing with and the stress I was under and he suggested we pray for each other. What a huge blessing! The rest of my day was SO much better after that!
My doctor himself just called me to let me know my second cytology test came back negative! He sounded as excited as I am! He said he doesn't feel like he needs a 3rd test after all and so we talked about dates for the biopsy. He said he felt I could wait until December if I wanted to, but I think I would like to just get it over with. He's going to have his scheduling nurse call me and give me some available dates and then we'll figure out what works best. But I just wanted to share the good news!!! Woohoo!
I had a basically normal busy day yesterday, and it felt pretty good! But let's back up - my doctor's appointment on Thursday went well. I just had to pee in a cup and then speak with the doctor - he is super nice. I asked him for a copy of the negative cytology report and I just kept reading the phrase 'negative for carcinoma' as I walked to my car with it - I think I want to frame it! :-) Before I left the doctor's office, his nurse (whose mom beat cancer naturally) came in and gave me a hug and encouraged me. So that was nice. Friday I spent virtually all day in the kitchen from like 11:30am - 11:30pm - juicing and making some raw organic dishes. So then yesterday I was normal busy - I went to the farmer's market in downtown Tampa with my friend, Marie, in the morning. I came home, did some record coupon clipping, took Nicole to a birthday party, went shopping at Dollar General, came home and had lunch, went shopping at Publix (spent $80 saved $80 - booyah!), came home grabbed a shower, started exchanging old hangars in my closet for new ones, finished getting ready and then went out to dinner with our friends, the Perrella's (to a raw vegan restaurant in St. Pete - no guilt!), got home around 10:30ish, spent some time with the kids, then stayed up until 1:30am finishing the putting my clothes on new hangars - loving my closet now!
The major news to report from last night was that we were almost to St. Pete when Nathan called us to let us know the town & country had a flat tire! He and the boys were supposed to go pick Nicole up from her birthday party, drop her off at a girls' bible study, and then they were going to a boys' bible study. Thankfully, we had added Nathan to our AAA membership so we called AAA to come out to change the tire. Nathan didn't realize it but Noah decided he was going to change the tire himself, so he went out to there and jacked up the car and got the spare out but couldn't get the lug nuts off, so when the guy from AAA arrived it took him no time to change it since Noah had done most of the work for him! So the boys went ahead and went to their bible study a little late while Nicole stayed with her friend, and they just picked her up on the way back home. I guess our kids are growing up!
Today has been really nice - 11:00am service at church about not worrying (very appropriate) - lunch when we got home - ping pong and rummy with Nathan - then we had a time like we used to do that we called 'little church' - we all brought a passage of scripture that meant something to us and the overwhelming theme of the verses was LOVE! Gotta LOVE it! :-) It was really a special time - lots of laughs and some tears and some great discussion.
Speaking of discussion - in my search of others on the web who have beat cancer naturally I stumbled upon Cortney Campbell's blog this week - greendrinkdiaries.com, and a discussion of a homeopathic deodorant she discovered. It is 1/4 Cup organic corn starch, 1/4 Cup organic baking soda, and 7-8 Tbsp organic coconut oil. I halved the recipe because I was quite skeptical of it working, but I'm LOVING IT (just staying with the LOVE theme here). :-) I highly encourage everyone to ditch the toxic deodorant and antiperspirant and try this! My kids say I'm sounding like a hippy these days - maybe I am - but I'm telling you, I think I should start a campaign - Ditch the Deordorant! Everyone else is campaigning these days - why not? Well, mainly because I don't have the time right now - but some day you may see a campaign from me on this - and I would totally approve of my message!
OK - enough of that - it's been too long since I've been in the kitchen, so I guess I'll go make dinner! Hope everyone's having a great weekend! Loving this weather! Blessings to all. :-)