Down but not out....

I feel as though I should just cut and paste one of my old post reflecting I am yet again trying another chemotherapy. Its been a while since my last update because I have a very hard time both physically and emotionally with this one. It started with some severe pain in my right side which of course led to more scans showing some more metastasis in my liver. Surgery or radiation were not an option so we have begun a new course of chemo called Ixempra I take it every three weeks instead of weekly and I learned rather quickly why. Although I had been handling side effects well this one is a whopper. I am currently on my week off and feeling great but getting ready for round two on Tuesday I am definitely preparing for what is ahead. The way I am trying to look at it is I need to knock my socks off to get rid of what is growing and since the others weren't doing the trick this one will.

"After you have suffered a little while, our God who is full of kindness through Christ, will give you his eternal glory. He firmly will come and pick you up, and set you firmly in place and make you stronger than ever" (Peter 5:10).

We are optimistic that I will be making the turn by Christmas and feeling well enough to enjoy the holidays. I will be surrounded by family and friends which is where I love to be. Christmas eve will be at my aunt Mary's while Christmas dinner will be here, everyone brings something and sets up so it is a stress free day with lots of fun and laughter. We are very excited, Luke of course is anxious for Santa's arrival.

I continue to enjoy reading your posts and encouraging words it is amazing how I have reunited with friends from Burnt Hills I have not heard from in 20 years. During our High School reunion they passed around my blog and I have been so lucky to hear from friends it is fun and exciting to hear how everyone is. Thank you for taking the time to read and respond I really enjoying hearing from each of you and am grateful for your prayers and concern.

God's Blessings, Merry Christmas!

Just a few pictures

Brett and I going to Redeemer School Auction...notice no neck brace for Brett and I have managed to hang onto some hair.

Luke is quite a pitcher, and really enjoys it we just finished fall ball already signed up for spring.

What a month.....

We often hear God only gives you what can handle I just wish he didn't trust me so much.

To say things have been hectic in our lives since my last post seems like an understatement. I'll start with Brett as I am very happy to report he is doing very well. For those of you that don't know he hurt his neck and was in some severe pain and after a few rough weeks of doctors, chiropractors and many a sleepless nights. The MRI indicated surgery a must. We saw the surgeon on Wednesday and he was admitted on Thursday. The exact procedure and terminology I don't know but his C5, 6 and 7 had basically collapsed on his spinal cord. He is in a neck collar which as you can imagine looks and is extremely uncomfortable having worn it for 5 weeks now we are going back to see the surgeon next week hoping he will move onto the next step which is a soft collar for a few more weeks that only needs to be worn during activity. He has done amazingly well, was relieved of pain basically the day after surgery and once he came home really didn't need any. I have not been used to being the nurse and I believe Brett will agree I am not good at it.

On another very positive note, Luke is doing great. After threatening to put him in a bubble or lock him in his room so nothing could happen to him he is enjoying baseball and doing very well in school.

Now for my update I wish I could give you all good news however my cancer has yet again progressed. My tumor markers made quite a jump in the wrong direction so we have done another PET Scan and found new spots in my lung and liver. So we are yet again on to another drug called GEMZAR it is a weekly treatment similar to the others. I had my first and my counts went down quite a bit causing us to have to hold off a week. I just had another last Friday and again we play the game waiting to find out if I can get a hold of the cancer before it gets me. I recently heard another metastatic patient say her body just likes to make cancer and that is what is happening to me. The drugs often work for a period of time until the cancer just figures out how to get around it so we take one step forward just to be set back by two. I can only hope that eventually we can kick its ass. We went to see the doctor in Boca we have seen a few times for his opinion and he recommended GEMZAR with another drug I have had before however the concern is two fold it can be dangerous to my heart and my levels will ultimately drop with the stronger treatment. I right now have chosen to do the weekly GEMZAR with the simple hope of at least getting that in me weekly. I am not sure this is the right decision but the best one I can make right now. I have also started to work with an acupuncturist and specialist with oriental medicine needless to say I have gotten an education on herbs, QI, cleansing, teas some not so good. I drink two glasses of tea that I brew myself and my first shot at it was something out of a Harry Potter movie I could not determine if there was something alive in that cup or not so although I tried drinking it was not an option. Luke and Brett had to leave the house for a while just to recover from the smell.

We are all a part of this war and it is because of each of you that we will continue to fight for a cure. I will continue to wage war in what ever way I can so I will continue to take chemotherapy, brew teas, get accupuntured and fight for my life but I couldn't if it weren't for each of you. Your well wishes, prayers and love are just what keep us going. Thank you!

Whats new with the Hartley's...

Our summer vacation is over and we are back in school. We are all settling back into our daily routines, Luke is enjoying 4th grade and we are very excited for a great year at Redeemer. We ended our summer with the Switzers as always we enjoy their visit to Florida and wish they were more frequent. We also have a new addition to our family, Teddi arrived via N.C. with Bonner and Kara Herring, two dear friends of ours, a few weeks ago. Luke had mentioned to Bonner that he has always wanted a yorkie puppy so Bonner quickly put the wheels in motion he contacted a close friend of his and pretty soon Teddi was born and on her way to Florida. We are all enjoying her and grateful to our friends for making it happen.

I am doing very well still have some pain but nothing I cannot manage and my energy level is good. I don't believe it will ever be what it used to but I am pleased with my progress. Chemotherapy is going well it is amazing how routine it has become. I am often asked about my prognosis or what my blood tests and scans are showing and to be honest I have not had any since I was released from the hospital. I have settled into this weekly chemotherapy routine and find myself not wanting to know anything I am finally feeling better and don't know if I can handle any bad news. As you all know I try to be as strong and positive as I can and when you are faced with some real results sometimes that attitude is hard to maintain. I want to just base my progress on how I am feeling and since I continue to improve I have not pressed for further testing. When I spoke with my oncologist last he said it can take as many as 8 treatments to see results so I would imagine it is getting about time for some scans. I am more anxious about it now than ever in light of my recent struggles but I will put all my efforts into thinking positive and celebrate when they are promising.

I will continue to marvel in the strength of prayer, friendship and my good fortune to be surrounded by the love of my family and friends.

Heavens how do you follow a post like that....as you all can see I am so very blessed. I have the most incredible friends and family. I am not sure that I would be fortunate enough to realize that love had I not faced the struggles that I have in my life over the last 5 years. As you can see by my sisters post we all get caught up in our own lives. Family would come to visit and I would find myself to busy to spend quality time with them. I can only hope that those of you reading these posts call someone in your life that you have not talked to in some time just to catch up. I spent over 3 weeks in the hospital surrounded by my friends and family with cards, emails, visits and phone calls I would not have gotten through it without your prayers and support I cannot possibly thank each of you enough nor express how much it has all helped me through a very difficult time.

I am doing very well, still experiencing some pain and weakness however I do think I am getting along and progressing each day. I go to chemotherapy every friday and not experiencing too many side effects. I have gone back to work a few hours a day, I will say it wears me out but I am so happy to be back. Luke has been going to all sorts of camps he had the opprotunity to go back to Bridges for a week with some old friends and he loved it. This week he is in baseball camp which he is really enjoying however he is very tired when he gets home. Brett is doing well and business is steady in the summer it does slow down a bit which is good I think simply due to the heat that they all contend with working on the cars outside. I am still not a lot of help in the evenings or outside with the yard so he is busy but doesn't complain.

Again, thank you all for your continued prayers.

"If God brings you to it.

He will bring you through it."

This Cloud Has a Silver Lining

Trini at home in Florida with Tami

As many of you know my sister Trini is an amazing person. Recently I had the privilege to learn this first hand. Trini is 12 years younger than I am and a bit shorter. When Trini was born my Dad said, “It’s a full house.” She would always be the baby of the family.

When I graduated from high school, Trini was just finishing Kindergarten. When I got married, she was 11 years old. When I came home to visit she was a busy with life: high school, learning to drive, dating, shopping and hanging out with her friends.

Trini moved to Florida. We saw each other less. She got married and Luke was born. In 2003, I got a call that Trini had been diagnosed with breast cancer. You always think it will happen to someone else. Here we are, in 2008 fighting the fight we never imagined would be ours to fight. Last month when Trini was hospitalized, I traveled from Michigan to Florida to help out in any way I could.

This is my silver lining. I got to know my sister.

She doesn’t complain. She loves Luke with all her heart. She doesn’t like burnt toast or her egg salad all ground up, but keep the Coke and pretzels coming. She can shop. She’d like to take Brett and Luke to Burnt Hills to see where she grew up. She wants to write thank you notes to each of you for the meals, gifts, gift cards, flowers and notes of encouragement that she has received. She worries about not having the energy to get them done. She worries. She is not very organized, but appreciates those who are. She is brave. She is beautiful and her whole face lights when she smiles. She is fighting as hard as she knows how. She inspires me not to waste my life. She is my sister and I am proud of her.

Please continue to pray for Trini, Brett and Luke.

"God is our refuge and strength an ever present help in trouble.” (Psalm 46:1)

Blessings,

Tami

There's No Place Like Home

Trini, Luke and Oreo happy to be home together.

Trini has been home from the hospital for 10 days. The good news is the x-rays continue to look good and she is able to eat a little bit. She is getting stronger and regaining some energy although she would like for it to be happening faster. Thank you for all your thoughts and prayers.

Take a Deep Breathe and Exhale

Those were the words the doctor used as he pulled out the fourth and final chest tube at noon today. The x-ray of the lungs looks great!

We all would love to have a grand celebration, but what would a celebration be without some good food. At present, Trini continues to struggle to keep down any food. She had her third round of chemo on Tuesday and is very happy to be home trying to regain some energy.

The Wheelchair Has Landed!

Trini said earlier that she wouldn't believe she was leaving the hospital until the wheelchair came to get her.

Thursday afternoon, 5/29 at 4 p.m. the wheelchair arrived and Trini was discharged from Martin Memorial Medical Center after 24 days. It was a tearful send off from Room 303.

She is home now trying to rest and recuperate. It is still very important to protect her from germs and to limit visitors.

She gets a visit each day from her home health nurse, Bennett, and has lots of doctors appointments, pills and treatments to keep track of. If you would like to visit, please call her to arrange a time.

Your thoughts and prayers are very encouraging to her. Thank you for all of them and keep them coming.

3 Down

Since our last post Trini has made some significant improvements. The drainage of fluid from her lungs has decreased and they have been able to remove 3 of the 4 drains. This is an answer to prayer. Thanks to all of you who have faithfully upheld Trini in prayer. People are praying for her in states she has never even been to. She wants you to know how thankful she is.

We also have good news to report in the area of eating. She doesn't eat much, but she has been able to keep a few bites down the last couple days.

Trini sleeps alot and is looking forward to getting home where she can actually sleep for more than 45 minutes at a stretch without some kind of interruption. In all seriousness, it is worse than you can imagine trying to sleep in a hospital.

Danger of infection continues to be a major concern. Therefore when she gets home she will have to limit visitors to protect herself.

We appreciate your patience and concern and we will keep you posted.

21 Days

As of today Trini has been in the hospital 21 days. We wheeled her outside this afternoon to get some fresh air. It really seemed to boost her spirits.

She continues to have difficulty keeping food down but with some changes in medication we are hoping that we will have some good news to report in this area soon.

With mixed emotion we have to report that one lung has shown significant improvement but the other has not. We all continue to take one day at a time and to be thankful for each improvement.

Thank you all for your thoughts, prayers, flowers, gifts, visits, e-mails, phone calls, meals, taking care of Luke and more.

Back to ICU

Trini has spent the last 24 hours in ICU. She had another procedure done on her lungs to reduce fluid build up. She is uncomfortable, but as always willing to do anything to get headed home.

It will take 2 -3 days before we will know if the procedure had the desired results. Likewise, the chemo that was earlier this week will take as long as 10 days to do its stuff. If all goes as scheduled she could have another chemo infusion early next week.

Today is Luke's last day of school. He reports that he has passed 3rd grade and will be moving on to 4th grade in the fall. He seems to be doing well.

Trini has received e-mails from many friends here in Florida as well as friends she hasn't seen since high school days in Burnt Hills. We enjoy reading them and are all encouraged by your thoughts and prayers. Keep them coming and please keep checking the blog for updates.

We've also added a "Subscribe by e-mail" option in the left column. Enter your e-mail address and then click on the link in the confirmation message that you receive. You will then get new posts in your inbox. We've also included a RSS feed for those sophisticated types who prefer to use a news reader (that's what the funny orange icon is).

Martin Memorial Hospital E-Mail Queen

"E-mail Queen" may not be Trini's first choice for a pageant title, but the volunteers here at Martin Memorial Hospital all know who she is because you have all been great at sending kind words and encouragement. She looks forward to mail call every day.

Trini continues to tolerate the chest tubes which are quite painful. She still tries to walk a little everyday and tires easily. For now email is the best way to let Trini know you are thinking of her.

They started chemo therapy on Tuesday. Our hope is that the chemo will decrease the drainage of fluid and eventually she will be able to get the tubes out and go home.

Traci and Tami are here now. Terri is coming Saturday.

To write Trini you may use the E-mail a Patient link on the Martin Memorial Medical Center Web page. Select the north hospital and Room 303.

Still in the Hospital

It has been a long and eventful week for Trini.

Trini had surgery on Tuesday. The surgeon inserted tubes in both lungs to drain fluid and did a procedure to hopefully reduce the fluid production. She was in ICU for one day and is now back in a private room and breathing easier. No one ever brags about hospital food being delicious but her current struggle is that everything makes her nauseous.

After 12 days in the hospital Trini still has a great sense of humor. When the nurses told us she walked around the room a bit her reply was, “It was more like shuffling.” When people tell her she looks skinny she says, “I like the sound of that.” She is really looking forward to going home but she says, “I’ll believe it when the wheelchair comes to get me!” We all are looking forward to that day too!

In the mean time please continue sending her emails in lieu of visits. They have been very encouraging to her. You may use the E-mail a Patient link on the Martin Memorial Medical Center Web page. Select the north hospital and Room 303.

Hospital Update for May 10

Good News! Trini is feeling a bit better. She had a good day Friday 5/9. Luke was able to visit. She got out of bed and walked a couple laps around the room.

She had a procedure done on one of her lungs. It's purpose is to reduce future fluid build up. It seems to be working. The doctors are presently debating treatment options for her other lung.

She is very much enjoying all the emails you have sent. They are an encouragement to her since it is difficult for her to have visitors. Keep them coming. At this point we do not know how much longer she will be hospitalized. We will keep you posted.

Trini in Hospital

Trini was admitted today to Martin Memorial Medical Center in Stuart to again have fluid drained off her lungs. We expect her to be there several days. This was much more difficult and painful procedure than when she was in overnight on April 25 for the same reason.

You may send Trini an e-mail that will be delivered by hospital volunteers by using the "E-mail a patient" link on the left navigation bar of the Martin Memorial Web site. When filling out the online form select "Martin Memorial Medical Center" (the North Hospital) and Rm 312. Moved to Room 303.

Trini presents trophy to LPGA Ginn Open winner Lorena Ochoa

Lorena Ochoa won her fourth successive LPGA title April 20 at the LPGA Ginn Open in Reunion, Fla. and was presented the Kelly Jo Dowd Championship Trophy by Ginn employee Trini Hartley.

Trini was chosen by her peers at Ginn to present the trophy,which honors Kelly Jo Dowd, mother of 14-year-old golf sensation Dakoda Dowd, who died of breast cancer in 2007.

The following video (YouTube.com link) includes an interview with Trini as well as the presentation of the trophy:

We will not lose our spirit!

It has been a while since my last post and things have definitely changed. Over the last few months we have continued to chase this cancer. My tumor markers continued to go up even after a good PET scan so after more tests CT scans and MRI we have found more small metastasis. Although the other spots are either smaller or stable we have found new ones. I have stopped the xeloda and am no longer involved in a study. My new drug of choice is navilbean, this one has been a doosey, I have done so well with the other chemo therapies that I didn't think this would be any different and they had said the side effects were much more mild well since I continue to defy the norm it has not been easy. My white blood count dropped considerably which has always been a potential problem but I had held my own. Not this time so we had to discontinue treatment for a while to try to increase these WBC. Friday they gave me a neulasta shot which has not been a pleasant addition to my picnic. I don't go back for 2 weeks which I am incredibly grateful for since I would like to start to feel more like myself before I try again.

With regards to the rest of the gang as always they continue to be incredible. Brett has been amazing he gives me just the right amount of support. Since we try to keep Luke as unaffected as possible when he asks for kick ball, or something that would require some energy before I can say I can't or no. My mom, sister or Brett simply step in to take my place. Luke is such a brave little guy that he tries very hard to understand something that is just unimaginable for a 9 year old.

We will continue to fight together and take the set backs in stride.

Celebrate Today!

As we begin 2008 I find myself not reflecting much on the past. When you spend so much time trying not to think about your disease it is hard to think about much other than today. So, as we go into a new year I am not thinking about survival, my next scan or how long I will be taking Zeloda or what medication will be next I am not even going to question how I will feel tomorrow. I will simply make today my best day.

I was recently included in a meeting with the Sales Agents at work and what each of them needed to bring to the table was their individuals goals. Although I was not asked to do the same it did caused me to think, what would I say? I know setting goals is important however I choose not too. I celebrate things daily like growing eyelashes, my eyes not watering, Luke bringing home an A or catching a pitch he throws that causes my hand to sting. That is what each day is about for me. Not what goals can be acheived in my life or career. I found when I set goals and they are not realized I am so disappointed, which leads to frustration. I do not want to feel that way so I find it better for me not to set those goals. What I do, is the best I can, work as hard as I can, be the best daughter, wife, friend, mother and patient I can.

I am happiest celebrating our daily victories. Try it! share with me and all reading what you are celebrating today.