Join Team Connie at Light the Night Walk Sept 25th

I know many of us are looking for things we can do and ways we can help Connie. The cards, pictures, food, and prayers are wonderfull and important and I know Connie and Ron have really appreciated it, but there is another way we can help, not just Connie but others suffering with various type of Leukemia and Lymphoma.

There is an event coming up put on by the Leukemia & Lymphoma Society on September 25th at Green Lake at 7pm that I will be volunteering and participating in called Light the Night, and I have organized a team appropriately named Team Connie (I would love it if it was the largest team that the Seattle chapter has ever seen). Please join me on Team Connie and register at http://pages.lightthenight.org/wa/SeattleL10/teamconnie. If you are not able to participate but still want to do something you can donate to the team to help reach our fundraising goal.

Below is a bit more information about the event. You can also check out the Leukemia & Lymphoma Society page to see what great work they are doing at http://www.leukemia-lymphoma.org/hm_lls.

Light The Night Walk: Taking Steps To Cure Cancer™
Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS's) Light The Night Walk events and bring help and hope to people battling blood cancers.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help fight blood cancer.

Funds raised by teams and individual walkers provide:

• Lifesaving blood cancer research
• Free educational materials and events for patients and their families
• Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
• Comprehensive, personalized assistance through our Information Resource Center

Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.

Quick facts about Walk night:

• Illuminated balloons, Light the Night T-shirts and a wrist band entitling walkers to enjoy food and refreshments are provided to all walkers who become a Champion For Cures by raising $100 or more to help fight blood cancer.
• The Walk is done at a leisurely pace and take less than an hour to complete.
• Strollers and wheelchairs are welcome. However, for everyone's safety, bicycles, inline skates, wheelie footwear, skateboards and scooters are not allowed.
• Walks take place rain or shine.
• Pets? Please check with the nearest chapter about bring pets.

Why Walk?
It's inspirational.

You'll be helping hundreds of thousands of Americans battling leukemia, lymphoma and myeloma.

It's a chance to do something good in your community.

Funds raised offer real help including:

• Support for leading researchers around the world who are working to cure blood cancers
• Valuable information for blood cancer patients and families
• Assistance programs for patients and their families
• Education on the latest medical advances for healthcare professionals
• Advocacy efforts that draw government attention to cancer-related issues

It's fun.

The Walk culminates in a community celebration with music, entertainment and camaraderie where friends, family and co-workers walk to celebrate their fundraising success and demonstrate their support in the fight against cancer.

What is a Champion For Cures?

We all know people battling cancer - men, women and children. And we can all do something about it.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help people fighting cancer live better, longer lives. A Champion For Cures will receive night-of-walk benefits* including a:

• Light The Night t-shirt
• Light The Night illuminated balloon
• Wristband which entitles the walker to food and refreshments

How to become a Champion For Cures

Raising $100 is easy! Send your online fundraising webpage to 20 or more people and ask each person for a donation of $10 or more. Even if only half of the people donate $10 or more, you will have raised $100 and most likely more.
*All patients and survivors will receive these items regardless of their fundraising levels.

How $100 Can Help Patients With Cancer

• "You have cancer." Those three words change everything. In communities across the country, LLS support groups provide patients and their families with a place to listen, learn and share with others in the same situation.
• Cancer can be overwhelming. But help is just a phone call away. LLS information resource specialists help educate and empower patients with individualized disease information and treatment options.
• In 2009 alone, LLS researchers were conducting more than 100 clinical trials, a critical step in the development of new treatments and cures that will help patients live better, longer lives.

Walkers who have raised less than $100 are welcome to attend and walk, but the night-of-walk benefits listed above are reserved for those who are a Champion For Cures.

Thank you and I hope to see you on Sept 25th!

Stacie

Round Two, The Final Knockout!!!

Sorry I haven't written sooner because I know you were all rooting for zero leukemia cells on day 14......unfortunately, that didn't happen. 20% of the few white cells I have left are still Ms. XXXX. I don't like her! I was going to allow myself on boohoo day and it kinda stretched into two, but like a grandmother friend of mine said to get grandchildren once, "You get what you get and you don't throw a fit." Anyway, I'm ready for round two and I think I got her on the ropes and this will be the knock out punch!

What's happening now: I start all over at the beginning of chemotherapy again. It won't be as strong of dose of chemo because we don't want to cure the leukemia only to have heart problems later. When they told me Tuesday I wasn't zero, I told them let's not wait another minute, let's start again right now. I have one more dose left of double chemo and four more days of single chemo, then another seven day waiting period, then another bone marrow biopsy. So, my dear friends, once again I'm asking for your prayer and well wishes. The hope remains the same; zero leukemia cells on day fourteen.

On a happier note, I have lost five pounds on my high calorie, high protein diet! it seems I'm eating all the time (I was actually afraid I would gain weight) but the scale says differently. YEAH!!!

I still love the buzz! However, my hair continues to fall out and I don't know if it's because I have been rubbing the top of my head too much, but I'm kinda getting that horseshoe bald kind of look. NOT the look I was going for! One nice thing though, Ron says I'm the best looking horseshoe bald gal he's ever seen. Now you know why I love this man.

My skin hasn't looked this clear and nice for a long, long time. I'm on intravenous and oral antibiotics and I'm pretty sure that's what is doing the trick. However, I cannot recommend leukemia therapy for skin improvement.

I'm sorry to say, because the chemo is working, it's making my immune system very, very weak. They want to limit my visitors to immediate family only. So, to keep me healthy, I have to miss my cherished visits with my dear friends. I hope you'll understand.

Words cannot express the gratitude Ron and I feel for all the love and support we have received from our family and friends. You are and always will be our very best blessing.

With Love and Gratitude,

God Bless You,

Connie

Biopsy Results

Connie received the results of her bone marrow biopsy this afternoon.

She had hoped they would find zero leukemic cells in her bone marrow and she would be in remission; unfortunately that was not the result.

When Connie was admitted to the hospital her bone marrow contained 40% leukemic cells, after one round of chemo she now has 20% leukemic cells. She will remain in the hospital and the doctors will start her on another round of chemo. The doctors said this happens in about 50% of patients. She will receive seven days of chemo then at day 14 (sometime around Sept. 7th) they will do another bone marrow biopsy in hopes the leukemic cells will be gone.

Of course this was very disappointing news to Connie and her family. Connie will need a little time to mentally adjust and prepare for the next round.

Because Connie’s immune system is already pretty much non-existent and the continuing chemo will only weaken it further, visitors are now limited to immediate family only.

Please continue to keep Connie in your prayers. She very much enjoys the cards and pictures, and there is still room on her walls.

As Connie says often, she is so blessed to have so many wonderful friends and family.

Day 20

I've now been in the hospital 20 days, I must say it seems longer. I'm sorry I haven't sent out more information, but Thursday I hit the proverbial wall. I was completely, totally, exhausted. To go from my bed to the bathroom was about all I could muster. As it turned out, my oxygen carrying red blood cells were low. As the chemo is destroying the cancer cells in my bone marrow it also destroys all the good blood cells too. I received two bags (pints?) of just red blood cells Thursday night and I could literally feel the difference within hours! My cousin said she could see my cheeks gain color. By Friday I was a new woman!

The chemo has hit the hair. I didn't realize I had so much hair until it was literally everywhere. I'd wake up in the morning with hair stuck to my face and coughing like a cat with a hairball trying to get the hair out of my mouth. I felt like a giant shedding dog with long hair. So, I called my Sis and we had the Room 707 Hair Recovery Party on Saturday. I am very pleased. I like the way it feels; like petting a puppy.

As it turns out, I am not alone with my buzz cut. My niece Kimberly, who has the biggest heart in the world, surprised me at my party by walking in with a "solidarity buzz cut" of her own. She has such a sweet, tender heart. I love her to pieces! And she was not the only one, Ron got buzzed and my brother-in-law Craig got the new do too. I am so grateful for the love and support I have received. I will spend the rest of my life trying to pay back a mere fraction.

Today is a big day for me. I am having my second bone marrow biopsy. This is when we want ZERO leukemia cells. I won't say I'm not nervous because I am, but knowing I have your prayers and well wishes on my side gives me tremendous comfort.

Thank you again for all your well wishes and prayers. You are my greatest blessing.

With Love and Gratitude
Connie

The Recovery Haircut Party!

Pour the champagne, and let the party begin.

Kathy having fun.

My new do!

My niece Kimberly gets the buzz too! What a BIG HEART!

Ron joins in. Not too much to cut. ;)

The Buzzed. I love my family!

The Waiting Game

I am now officially finished with round one! Seven days of 24 hour chemo drip ended Saturday evening. I am finished witht eh IV pole and I feel free! Now is the beginning of the waiting game.

I have learned a couple things about chemo I thought might be interesting. THE STUFF IS TOXIC! The nurses have to suit up and put on special protective gear before they can even handle the injectors. They ahve a toxic spill team dressed in space suits that would be called immediately if even the smallest amount is spilled. It's called a code orange. make me feel kinda funny getting the stuff pumped right into my veins.

How it works: chemo destroys rapidly dividing cells. Cancer cells are rapidly dividing, but so are blood cells, hair cells, inside lining of your mouth cells, etc. That is why there are so many bald chemo babes with mouth soares out there. Actually so far, (can you see me knocking on wood?) I haven't developed the mouth sores. I am gargling up a storm with saline (salt water) and that is supposed to be one of the best defenses. I have quit flossing my teeth (is this too much information) because my platelets are so low, if there was any bleeding, it could be different to stop. I'm winded and tired because I have so few red blood cells left to carry oxygen to my body, but transfusions will help me with that. Good grief, I sound like a mess!!! It was hardly a month ago Ron and I went hiking seven miles...ahh the good ol' days.

A word about blood donations; someone gave so I might live. If you're hanging around with not much going on, it would be wonderful to give to the blood bank. You can do it in my name if you like or not, but if you can, pleae go see the nice nurses at the blood bank and enjoy a cookie and orange juice on me. :-)

Some good news: because I ahve the rare XXXX split chromosomes, they don't know much about them. Tests were ordered to see if I had the highly mutating, long protien strand type that is very agressive and is difficult to treat or if I had the short, less agressive type. (I can feel bio-chemists everywhere cringing at my explanations). Anyway, HALLELUJAH, I have the short stubbies!!! the Doctor said he couldn't have been more pelased with the results! Treatment stays on track...beat me down and then build me up; double zero on day 14; only good white cells on day 28; go home!

More good news: I have the most fantastic friends and family anyone could ever hope for. Ron and I are blessed beyond words and will always be grateful to each and every one of your for your kind wishes and prayers.

God bless you.
Connie

What I'm Learning

I'm sorry I'm so slow to get back to everyone, but believe me you're always in my thoughts.

I thought I would try to explain some of the things I have learned about Acute Myelogenous Leukemia (AML). This is how I've been told it starts: one white blood cell decides it's not happy with its chromosomes. Do these chromosomes make my butt look big, kind of thing. Anyway, it decides to change. My understanding is it doubles one of the markers on the chromosome strand and then just goes to town making just like it. Sometimes it multiplies slow, Chronic leukemia (the preferable type) or rapidly, Acute leukemia. I have the acute type. Some good news: they say they caught it early; only 40% of my white cells are cancerous. I know, that sounds like a lot to me too, but I guess most people come in about 80% and very sick. That is certainly one thing I can be grateful for; I feel fine.

Chemo therapy has already started and they are hitting it hard. I had to have my heart tested to see if I was strong enough for the strongest treatment because it's usually used on younger patients, but it's the one they have the most success with. I passed the test and have been on continuous chemo drip since. I finish this Saturday night. Then it's the waiting game. What we're hoping and praying for is 0 white cells and 0 leukemia cells on day 14, which is August 21st. That would be my first thumbs up! If that happens, then on day 28, I think that's September 4th, we're hoping the bone marrow shows only the good white cells are coming back. That would be two thumbs up and I get to go home!!! I would then come back to the hospital for six days every month for four months for a broader range of chemo to make sure they get everything. So my dear friends, the wishes and prayers I'm asking for is double zeros on day 14. OK, a complete recovery would also be good to throw in there for the long run.

With AML there are four chromosomal changes they are used to seeing. One they are very successful with and then, on a sliding scale, the other three. I found out yesterday I don't have any of those four. I have a very rare form of this disease. In my case the chromosomes that made me a female at birth, XX, have doubled and my leukemia cells are XXXX. I would call them super woman cells, but I don't want to give them any more power than they already have so I am calling them super sissy cells and I'm ready to kick their cancerous butts. The treatment I have been started on is going to remain the same. They have sent my results out to all the biggest cancer centers around the world for more information, and are running more tests to give us the most information possible. I should be getting more news starting next week. In the meantime, because they know so little about my XXXX type, I'm saying this is the very best type to have. I'm going to be the recovery story all leukemia patients are going to want to hear about. I picture them saying as they are waiting for their test results, "I sure hope I get that XXXX type of leukemia. I hear it's the easiest to have a full recovery from."

I want everyone to know I feel a little more tired every day, but I do not feel sick. My hair is actually looking good. (I think it heard I was ready to shave). However, first really bad hair day, I am having a hair cutting party. I told the nurses champagne will be served (I'll have sparkling cider) and because hair loss is a sign the chemo is working these will be a Recovery Haircut Party in room 707. (I think 707 is where they put old Boeing people) Can you imagine ladies getting up and swiping a washcloth across your head and calling it good to go? Marvelous!

I want you all to know Ron and I are grateful from the bottom of our hearts for all your love and support. I count you as my most wonderful blessing.

Connie and Her Chromosomes

Back on August 5th when they drew many, many tubes of blood from Connie, we were told some tests would be sent to the U of W and would take some time to get back. Because we knew the single most important prognostic factor in AML is cytogenetics, or the chromosomal structure of the leukemic cell, we have been ‘patiently’ waiting to get the results on this test. Well – we sort of got some news today, not bad news and not good news. Apparently Connie’s results came back with something ‘rare’ or something that did not match the pattern they normally see. I could try to get into more Chromosomal information but it would not mean much to you as it did not to any of us either. Bottom line is they are running more tests and they will ‘hopefully’ have more information for us in another week. Her treatment stays the same and she is tolerating, very large doses of Chemo amazingly well. We are still looking for a zero blood count (of all Leukemic cells, and unfortunately the good cells also) around August 21st. This remains the goal.

Words cannot express how grateful and blessed I feel to have such wonderful friends & family. Your generous outpouring of love, prayers and well wishes have touched me more than I can express. THANK YOU! BLESS YOU! I LOVE YOU!

I thought you might be interested in the events that led up to my stay in the hospital and my diagnosis of Acute Myelogenous Leukemia (AML). Well, here's my story and I hope I'm not putting in too much information.

Friday 7/31: I went to work, but I had mild lower stomach cramps, but hey, it's Friday and I had a party with dear friends that night, right? And you don't let mild stomach cramps keep you from a party with old pals! (If it's a Monday and only work.......well that's a different story) Anyway, I had a wonderful time sitting in the sun, relaxing and kibitzing with my friends. That night at home however, I started to run a fever with chills; teeth chattering; and the shakes. So, I wrapped myself in a warm blanket and called it a day.

Saturday 8/1: Woke up in the morning feeling pretty good but kind of tired. I found our old mercury filled thermometer and cleaned it up really well because the last time it was used could have been when the kids were babies, if you get my drift. Anyway, I was surprised to find I still had a temperature. It was only a 100 degrees but other than that I felt fine. I saw it as a good excuse to lounge on the couch and watch a few old movies without feeling guilty.

Sunday 8/2: Still running this annoying temperature of 100 degrees, but feeling fine so I'm thinking this thermometer must not be working right. Sooooo, I cleaned it up really well again and forced Ron to take his temperature. He's 98.2 so, dang, I got some kind of weird bug. I tell Ron if I have the temperature when I go to bed tonight, I'm not setting the alarm and I'll call the Doctor.

Monday 8/3: Same ANNOYING, temperature of 100 degrees! Geesh, give a girl a break already! The weirdest thing is nothing else is bothering me. I just feel kinda tired. I called my Doc, but he doesn't work on Mondays so I went to his backup. He listen to my symptoms, took a blood and urine sample and prescribes an antibiotic for me with these instructions: If I feel worse, call him back right away, if I don't feel great by Thursday come back and if he finds anything unusual in my blood samples, he'll call me.

We fill the prescription and I take the first pill and six hours later the fever is gone........end of story I think. I took my temperature that night before bed and everything was normal......yeah! I set my alarm and go to bed.

Tuesday 8/4: 3:30 am rolls around, the alarm goes off and I feel exhausted. Then I ask myself (cause I'm the only one in our household up at this hour) are you really exhausted or is it just 3:30 in the darn morning and anyone not crazy would feel exhausted. I figure it's the later and go to work.

I get a phone call from the Doctors office at work and they want me to come in for more tests right away if possible. That's odd, I think, cause it seems the pills are working, but I do as I am asked and go give more blood samples. I'm told they will call me with the results. Hmmmmmm, OK.........I wonder if I should be concerned or is this new Doctor an over reactor type. I chose to believe the later and Ron, Maggie and I have a picnic at the park. I ask Ron, because we have such a busy week this week, why don't we go to the Mall and pick up our baby shower gift for our grandchild to be. He agrees and it's at the Mall I get the call from the Doctor's office to go to Providence Hospital Colby Campus. "Really, for more tests?" "No", I'm told,"to be admitted." "What should I tell them I there for?" They tell me, "You have a low white cell count and all the paperwork is done so just go to the admittance desk." Well this really does get my attention!

It seems unreal I'm in the Mall one minute and the hospital the next, but that's the beginning of how this all got started. I know I owe so many people emails, sincere THANK YOUS, and much, much more. Please forgive me for being slow to respond but I have been on such a roller coaster of emotions, and so busy with test after test and pokes and prods and Doctors and nurses I hardly can think straight. I MUST thank Linda for getting the information out for me and her daughter Stacy for getting me online. I love you two and will always be grateful.

Monday 8/9: It's almost midnight, so I'm ending this now, and will try to continue tomorrow. Again, I want to thank all of you for all your goodness and kindness. Please keep Ron and I in your prayers.

Information About Acute Myeloid Leukemia

For more information on Acute Myeloid Luekemia you can check out this information that I found on the Luekemia Lymphoma Society website. http://www.leukemia-lymphoma.org/attachments/National/br_1279291672.pdf

Chemo Begins

Connie is in good spirits, and concerned for her future, but still facing her illness and treatment with her usual wit and humor. This is the latest information as of today.

About 6:30 Friday night Connie was started on Induction Chemotherapy.

Orginally they were planning on a 7+3 chemo plan, 7 days of Cytarabine (ARA-C) and following that 3 days of Daunorubicin. They decided to go ahead and hit her with the Daunorubicin right from the start though since she is so "healthy" right now. So instead of 10 days of initial chemo she will be getting it all in the 7 day period.

Day 10-14 she will be at the lowest point in her blood cell count and they will repeat the bone marrow biopsy to see if there are still leukemia cells visible (So the mantra right now is "0 in 14" 0 means no leukemia cells and time to start rebuilding the immune system). If things are looking good at that point, no more induction chemo will be needed and they will do another bioposy at 28 days to make sure that her bone marrow is producing as it should and her counts are getting back to normal.

Given that her white blood cell count is good, she will then be released from the hospital and be sent home to rest and recover for the next few weeks. After that they will start the Consolidation Chemo. This will consist of 5 to 6 days in the hospital each month for a 4 month period while she receives additional chemo. It is somewhat of a maintenance mode chemo to kill off anything that may be remaining.

At this point bone marrow transplant is a 50/50 thing. If her counts stay good through the Consolidation chemo then a bone marrow transplant may not be needed, if the counts start to decrease again then they will explore the bone marrow option.

There is one big test that the doctors are still waiting to hear back on, it is a chromosomal test that gives the doctors a better indication on how she will respond to the treatment they have started. We are hoping to get the results for this tomorrow, so good thoughts are prayers that they test results come out good are much apprecciated.

The doctor said she will be feeling her "normal" self for the next week or so and then she will probably start feeling bad, either as a result of the chemo or any other bugs that might get into her system. They will be giving her anti-nausea and a variety of other drugs during the course of her treatment to combat anything that may come along.

If anyone is interested in donating blood they can do so through the Puget Sound Blood Center. We initially thought Connie would get credit for blood that is donated in her name, but it is actually just a recognition that we are donating because we have a sick friend and we want to help keep the blood bank full of donations, Connie will be receiving blood from the blood bank at times during her treatment.

Please remember any of this information can change on any day of her treatment, this is the best outline the doctors can give us as we all work through Connie having this illness in our minds.

Connie can have visitors at this time; she enjoys them at this point. We always need to be aware of her need for rest as treatment continues so don’t overstay. When visitors become restricted we will let you know. Keep conversations positive, what is going on in your life that she will enjoy hearing about. She has already heard far to many stories of “I know someone who had”, so survivor stories are great and encouraging for her to hear, but lets not over due that line of conversation.

We have set up a Facebook page called ‘Connie’s AML Fight’. Please join (Like) it as we will be posting information there and letting you know when ‘New’ posts are on her “Blog”.

Because Connie is going to be ‘inpatient’ for quite some time I wanted to encourage everyone to mail cards  and pictures to her. She gets those during the day when she has the least amount of visitors and they are all being posted on her wall. The address is:
Providence Everett Medical Center

Connie Chose Room 707
1321 Colby Ave
Everett WA 98201

Thank you all for your prayers and concern for Connie.

The Diagnosis

Okay, so here is the scoop, Connie was diagnosed on Thursday with Acute Myelogenous Leukemia (AML). I will try to summarize what the doctor told us as accurately as I can. I took notes but could not keep up with all the technical and medical information he gave us.

Connie will be staying at Providence Colby Campus Hospital for the next 3 to 5 weeks for Induction Chemo. They will hit her hard, she will probably be bored the first week and then may become a pretty sick after that. They feel they caught her Leukemia in the early stages though which is a very good thing.

The doctor told us she has a 65% chance of going into remission. But any of us that know Connie know that not going into remission is not an option. There are still some additional test results that are still not in and they may give us a better idea of her prognosis.

Once in remission she will be given Consolidation Chemo for the next 4 month with her being in the hospital for 5 to 6 days each month. During this time they will monitor her to see if a bone marrow transplant is needed. But the first step is to get her into remission before we worry about bone marrow transplants.

Blood transfusions will be needed for her along the way. If anyone wants to give blood you can donate in her name at the Puget Sound Blood Center.

Unfortunately Connie is not able to have any flowers in her room as it can carry bacteria, notes and well wishes are more than welcome though.

Why a Blog?

So I thought it might be a good way to keep everyone updated with Connie and for Connie to be able to share her experiences with us, at least while she is feeling good and bored in the hospital.