Friday, August 23, 2013

Good day friends and family, I hope life is treating you well.  I'm feeling the best I have since checking back into the hospital.  I checked back in on Wednesday and started chemo right away.  This time I'm on two different kinds of chemo; Cytarabine and Mitoxantrone. The funny thing is Mitoxantrone makes my urine blue and could even make my skin blue, so I'll be like Smurfette!  In times like these you have to have a sense of humor right?

My chemo will last 6 days and then we wait to take another bone marrow biopsy to ensure my leukemia is in remission.  My bone marrow transplant is scheduled for September 13th, 13 is my favorite number so I'm hoping that will provide me with some luck.  I found out my donor is a female and she is 20 years old, which is great because she should have a stronger immune system.  I'm hopeful this transplant will be the last one.  Although, we have heard of people having up to 4 transplants, but they tend to be older patients.  

I'm in a different wing this time so I don't have my old nurses who I really liked but I'm sure I'll get to know these nurses just as well.  I'll be here for at least two weeks before moving to the transplant floor.  For now I'm blessed with a huge room, with four chairs for visitors.  With our large group of friends and family here this is very nice.  I'm also able to exercise more, they brought me a stepper and taught me the exercise moves that I'll have to do for my physical test required before my transplant.  I'm still walking the halls but also have access to a treadmill.  

In other news, I realized I never thanked the wonderful women of the Pyjas family.  Eric's side of the family is huge and all my cousins and aunts made me the largest get well card ever.  Literally they used a huge poster board filled with fun get well cards and messages from everyone.  It made me feel really blessed.  So thank you to all the Pyjas women who have pulled together and offered so much love and support.  

Well I guess that's it for today, I'll try to get back to daily posts, sometimes I feel like I don't have much to say.  I am feeling really strong and am ready to get into the transplant so I can start the healing process.  Thanks for all your continued love, support and prayers, I'm truly touched and thankful for your support.  Much love from 5 north room 18!  

Monday, August 19, 2013

Hello family and friends. I haven't written because we have had a lot of last minute changes in treatment options. Last week the doctors, worked hard to get me tested for admission to a clinical trial which would fight my leukemia and act as a flt3 inhibitor. I had a surprise bone marrow biopsy, lung tests, a spinal tap, echo reading and an EKG. All these test were done over two days but the results came back quickly.

I feel really good about my doctor, her name is Eunis Wang, she is known by the staff as the Drill Sargent. Plus, she seems to generally care and will do what she can to make sure I get the best care possible. She is on vacation for two weeks but she called me Saturday morning to go over the change of treatment. She explained that my spinal tap showed that the leukemia has moved into my Central Nervous system and to my brain. This means we have to use two types of chemo one for the blood and another for the CNS.   Then she gave me her personal cell number and to call no matter what.  That's unheard of, of course she  mentioned not to tell the other patients.

I will continue to take Sorafenib for the blood and I will receive spinal taps MWF where they will shoot chemo directly into the spine. The good news is Sorafenib is a flt3 inhibitor, which I think will stop my disease from mutating which makes it stronger. Once we see the leukemia go  down to a suitable level or disappear completely we can move forward with the transplant.

I am so thankful for the doctors, nurse practitioners, nurses both inpatient & out patient. Every one treats me like gold. Most every one knows who I am and have been working behind the scenes to fight the disease.   Even the floor nurses who treated me in house even have called me to see how I am doing,  I feel so safe here at Roswell and I know I am getting the best care possible.

I think that's it for today. I feel strong and confident that this new treatment.. I will win the fight against this disease. Thanks for reading even though the posts have been sporadic. Much love from Roswell's infusion room.

Wednesday August 14, 2013

Good news, we have a date for transplant, September 4th!  I will probably check back into the hospital a week before but at least we can get the process started. I just want this all to be over with. I think today we will discuss our options with the doctor on how to get my leukemia in remission which is key to making the transplant work. The funny thing is I have been off all my chemo drugs for a week and my body seems to be holding it's own against the leukemia, that's according to my blood tests.  I'll never under estimate the natural healing process that our bodies provide.

I have a lot of thank you's to make so bear with me.  First, thank you to my awesome Mom who came out to stay with me during my last days in the hospital. She spent every day by my side and brought a lot of comfort. I am so lucky to have her as a Mom and it was so good to have her here.  So thanks Mom, I love you!

Next up, thanks to Catherine Shanahan and her family they sent me a beautiful courage bracelet from Stella & Dot a very cool jewelry company.

A big thank you goes out to The Peterson family; Kirk, Patti, Alex & Eric, they sent an awesome care package filled with relaxation goodies. Basically every thing you would want to feel like I am at the spa. Plus, it came in a beautiful hat box, thank you I love all the goodies.

I also want to thank all those who visit me and help care for me, Eric and I feel so much love and support. Kathy & Chuck Pyjas who help shuttle me around and are always available to help. Dave Vogel who visits almost daily and helps keep Eric sane. Jaidee & Chris Finn who keep me supplied with pillows and goodies.  My sister in law, Linda who is letting us live in her house! Jenn & Tim Seyfang and my wonderful nieces and nephews; Tim, Stephanie, Nathan & Sarah. They have kept me supplied with a beautiful collection of art work to make me smile.

Another thanks goes to Holly Clegg who has written several cook books including a cancer cook book. Holly is the sister in law of my Mom's best friend Pam Hill. The two of them came up with the idea to send me several autographed copies that I can give to the nurses who have taken such good care of me. What a great idea and I am so thankful for their donation of books.

Eric and I could not get through all of this without all of you. When we went through this the first time we had basically no family or friends near by, although I did have several visits from my family to help act as care givers. It makes such a difference for both of us to have so many people rally around us.

There are so many people to thank so if I didn't call you out by name please know your support has kept me going and make me feel so loved.

 I cannot forget to thank my amazing husband Eric, you are my rock and have proven daily how  special our love is. He has had to take on all the responsibilities and never complains all while working. I love you so much and am so proud of our relationship.

I think that is it for now. I'll update you once we know the next course of action.  Thanks for the continued support, much love from Buffalo.

August 9, 2013

Hello friends & family, sorry for the delay. We had trouble with the blog and we have limited Internet. Lucky for us we have a 6 am lab appointment at the hospital, so I have Internet for now. Oh and if you couldn't tell, it's me Jenn writing the blog. I'm feeling up to posting again!

So I was released from the hospital on Monday and I have been loving every second of my freedom. Thanks to my sister in law, Linda, we have our own place where we can stay and keep Buster!  Our family unit is back together again. I've been eating good food enjoying being outside and just enjoying being with Eric.

I go to clinic at the hospital Monday, Wednesday and Friday. They check my blood and give my IV and breathing treatments. They had to take me off the serafanib, which was my chemo pill. It was spiking my liver levels and causing my white blood counts to plummet. The doctors felt it was doing more harm than good. So they are working on a new plan, hopefully we will learn more about it  today. My leukemia seems to be holding and isn't causing me discomfort. Now we need the doctors to figure out how to get me back in remission so we can move forward with the transplant.

I've had quite a few surprises lately. For one my friend Holly flew out from Charlotte just to see me! It was a great surprise, totally unexpected. She even brought me art supplies and stuff to make friendship bracelets, it's been fun revisiting my childhood!  I can't thank you enough for the visit. Next up I want to thank Jen Jones for the chocoholics doctor bag. And more thanks to SYNNEX for an excellent cookie and adorable bear. Lastly, thank you Bob and Linda Williams for my 2013 Panini  football sticker book with stickers!  Another flash back to childhood plus it gets me familiar with the NFL rookies. We have many good memories of visiting you at your shop!

Thanks everyone for your continued support. Much love from the Roswell Park cancer institute!

Thursday August 1st, 2013

Good Afternoon Everyone! We have some great news to share from the hospital. It looks like Jenn will be released from the hospital on Monday as long as the head doctor approves the recommendation. Jenn has been eating well daily, so they removed her TPN IV. She has been working out like an olympic hopeful as well. This past week Jenn has stepped up her laps at the hospital and a half mile daily is the new norm. She also worksout in bed with weights and plays with putty to increase her hand strength as well. This is all very important as Jenn will need as much strength as possible for the bone marrow transplant procedure that is just a few weeks away now. The doctors still need to figure out the best method for attacking this FLT-3 genetic mutation as the doses of chemo are only causing more and more mutations, so they need to fix this break in Jenn's chromosonal chain first and foremost. Once they accomplish that, Jenn will proceed back to Roswell for her bone marrow transplant. With all of this said, Jenn is doing quite well and I have no doubt that she will yet again put this nasty disease behind her and move forward stronger and healthier then ever. Cool news for the day, Jenn was told that she can go outside at Roswell for a half hour or so this weekend with me. I am SOOO excited to get some time outside of these hospital walls with my wife, best friend and overall best woman in the world!! We appreciate all of the cards and well wishes that Jenn has received so far to date, they are all very touching and uplifting; thank to everyone!! One last thing, with us leaving the hospital, please hold off on sending anything to Jenn at this time. I will post our new address tomorrow on the blog and this way I know we will be there to receive any well wishes. Much love from room 5409!! BTW - Sorry for the format, I had to write this in HTML and it's a huge run on paragraph...UGH!