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6/27/15 11:29 A

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Thank you for the prayers!

I didn't have too many tummy troubles with the antibiotic, but one of the side effects was headaches, and none of my headache meds seemed to help with them. I finished up the antibiotics on Thursday, and the headaches stopped too. I hope I never have to be on that drug again!

Starting the new cancer drug my oncologist wanted me on, the Ibrance, on Monday. It has to be ordered from a specialty pharmacy, and I will get my first shipment of it Monday, via UPS.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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6/19/15 3:10 P

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Sending extra emoticon and emoticon Pru and Shari!

Nola

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6/19/15 2:44 P

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Pru, I am so sorry that your mom is not doing well. emoticon

I ended up in the hospital with a cellulitis infection in my right arm, (the same arm I had lymph nodes removed from when I had my bilateral mastectomy in 2003); I went to the ER Tuesday afternoon with a very red, painful, and swollen hand and arm, and a fever. They kept me for a couple of days to give me I.V. antibiotics. I went home around 7:45pm yesterday. Now I am on oral antibiotics for 7 days.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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6/15/15 3:04 P

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Thinking of you guys! Things are crazy in life. Mom is not doing really well at all. I hate to see her suffer like this!!

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6/13/15 7:52 P

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Shari I am hoping and praying for good results from the new meds. I keep you in my thoughts and prayers. emoticon

Nola

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6/12/15 4:39 P

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I had my oncologist appointment earlier today to go over my recent CT scans. The cancer has spread some more within the bones (mostly in the spine and ribs) and also in the liver; my liver is now 30% tumor; but the good news is that for now, the cancer is not affecting the liver enzymes, so the liver is still functioning as it should.

He said there is a brand new drug that he wants to try; I can't remember what it's called, just that it begins with an "A", and since it's so new, it's only available from a specialty pharmacy. I'll have to wait for the pharmacy to call me and set up the delivery. I will be taking it along with another drug called Femera; both are oral drugs, and they are not chemo, but hormonal treatments. He is also going to keep me on the Halotestin injections because he said they are helping to keep my blood counts up.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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5/30/15 12:39 P

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The elevator has been fixed and will be upgraded soon. I was able to take it back up to my apartment on Thursday after my injections.
My stomach and the pain have settled down and I was out for a short walk this morning and am doing laundry.
Shari I know that the weather let's me know when it is changing and it has been a rough Spring pain wise.

Nola

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5/30/15 10:59 A

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Thank you Nola!

I hope that elevator has been fixed by now.

Have been having a flareup for a few days now of the hip/knee pain on my left side; part of it is from too much activity, and I think part of it is the weather; lot of changes in temps and humidity over the past few days, and it's also rainy today too.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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5/27/15 2:09 P

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Keeping you in my thoughts and prayers!
the elevator is out and I am on the 4th floor. I have my helper today and need to get out but I am not sure how well my back will do trying to do the 4 flights of stairs. My stomach has defiantly been acting up lately but I am sure that it is due to my medications. Big emoticon to all.

Nola

Kansas~ CST
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5/27/15 1:50 P

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My tummy hasn't been feeling so good lately; not sure what it is, but I think stress is part of it. I had CT scans done last Friday. I was able to get my report online, but I don't see my oncologist until June 12. The results were not good, but I can't tell just from reading the report how "bad" the bad part really is; it could be that things are not as bad as I am thinking they might be.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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5/23/15 5:05 P

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We are having another day of rain today but hope this wonderful Spring has brought our drought to an end. I went to Walmart today to buy a few things thanks to a friend sending a gift card.
My stomach is not to happy today but I can do liquids this weekend and hope that will help. I know that I am not doing as much exercise as I should and that is making my digestion even slower. I hope that everyone has good tummy days this weekend!

Nola

Kansas~ CST
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Don't quit! Tomorrow is another day to Sparkle.







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5/23/15 1:47 P

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Hello everyone!

It's been awhile since I have checked in. I had a blood transfusion a week ago, I have been doing a lot better since then.

Also had CT scans yesterday, to see what is going on right now with the cancer. Still waiting to get my results, they haven't been posted online yet, and with the holiday weekend, I'm not expecting to hear anything until Tuesday.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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5/9/15 5:17 P

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I am feeling a little better today! That is really cool that they are doing that for you!

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5/9/15 12:49 P

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I hope that today is a better day. The Agency on Aging is gifting me quite a bit of Ensure and now I can go back to my 2 liquid meals a day! emoticon
I had a lot of solids yesterday so I am thinking I will pay for it tomorrow. emoticon


Nola

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5/8/15 8:13 P

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good! I am having a very bad tummy day today! Skipped my bikini body mommy challenge put did walk with weights. That is about all I can do today!

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5/7/15 8:13 P

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Better today. emoticon

Nola

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5/6/15 6:34 P

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well that is not fun. HUGS

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5/6/15 1:48 P

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Having a flare but it seems to be related to the lunch that Meals on wheels sent. I am just not doing solids well right now. emoticon for your great support.

Nola

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5/6/15 5:26 A

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hope you feel better today

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5/5/15 1:25 P

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My throat is still sore from the EGD yesterday so I am keeping with my liquids. Because I have so much problem with medications they used less when they did the procedure which meant I was more awake and much less comfortable.

Nola

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5/4/15 5:33 P

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glad everyone is doing pretty good. I am working on getting my meds regulated. But for the most part I feel pretty good. We called hospices in for mom

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5/1/15 11:22 A

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emoticon emoticon I am so glad that you are doing better with the counts. I hope that you have a quick recovery from the UTI. I am glad that you have your wonderful books to keep you company.
I go on Monday to have another EGD. I have some issues and think that the esophagus may be small again. It may be the GP but we will see. The new medication is helping with the Fibro so hopefully if I can breathe a little better I will be a little more active.
Wishing everyone a good tummy day! emoticon

Nola

Kansas~ CST
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Don't quit! Tomorrow is another day to Sparkle.







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5/1/15 10:09 A

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Hello team!

I'm sorry it's been so long since I have checked in.

Still having issues with fatigue, but my hemoglobin counts are not going down as quickly as they were before. So far, I've gone 6 weeks now without a blood transfusion.

Doing ok with the GP, but now I am on antibiotics for a UTI.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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3/22/15 9:08 P

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Shari, I am so sorry that you had another trip to the ER but I am glad to know that they took care of you. I hate hospitals.
I was at the Rheumatologist on Thursday and she found more issues with my OA. With all of the OA problems I have they had never checked my neck and it has spurs and some more damage. I go for a nerve conduction study soon.
Wishing everyone lees pain, more energy and the beauty of Spring!


Nola

Kansas~ CST
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Don't quit! Tomorrow is another day to Sparkle.







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3/18/15 8:35 P

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Hugs to everyone! MOM2ACAT glad your feeling a little better today. Hospitals are the worst palce for rest!! Thats for sure!

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3/16/15 5:48 P

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emoticon emoticon for you both Pru and Nola.

Sunday, I woke up feeling really crappy again from the anemia. I ended up going to the ER again, as much as I wanted to avoid it. Besides the anemia, I had the rapid heart rate again and was dehydrated. Before they gave me 2 bags of fluid, my hemoglobin was 8.7, which was not low enough to qualify for a blood transfusion, but because of my symptoms, the ER doctor decided to check my blood counts again after the fluids, because sometimes with anemia, if you are dehydrated, fluids can dilute the blood and make the anemia worse, and sure enough that was the case for me. My hemoglobin after the fluids was down to 7.3, so they decided to give me a blood transfusion and also admit me for observation.

I am feeling a little better today, but still very tired; if you've ever spent a night in a hospital, you know they are not the best place for rest! I did not sleep very well last night, but I was very glad to get back home after I was discharged around noon. I have to go for some more lab work Thursday, and I have a followup with my internist next Monday.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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3/15/15 3:15 P

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I have Erosive Osteoarthritis in my hands and there is horrible pain in them so many times. I hope that you have some relief soon.

Nola

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3/14/15 10:26 P

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Hugs everyone. My tummy has been doing good, but my hands are killing me. I have dm nerve pain and the last week or so it has been really bad. I am ready for some strees free days!!!!

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3/9/15 10:13 P

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It seemed like I ate everything in sight today and everything is in the right range except my sodium. Those olives do it but they help the nausea. My fibro flared today and I took a muscle relaxer and took the day off. I might be able to get my steps in if I stay up til midnight. Of course my fitbit is low today so I have taken it off to charge. emoticon and no steps will count until I put it back on after it charges. emoticon

Nola

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3/9/15 2:15 P

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Nola, I hope you are starting to feel better from the latest flare up.

My hemoglobin stayed in the "10s" range for the past two weeks, which is an improvement. I don't know what it is today though. I had lab work done this morning but the report has not been posted online yet.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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3/8/15 5:17 P

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I had tilapia for my first meal today. I love it when it marinates in Italian dressing. It was so good. I have not had my protein high enough so I am going to have to try some new things.


Nola

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3/8/15 4:07 P

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Good luck. Hope it helps

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3/4/15 10:04 P

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Back to my phase 2 GP diet. I am going back to the 2 liquid meals. It will take some time to find what changes I have since being able to be on phase 3 for quite a while.
I hope that everyone has a good tummy week.

Nola

Kansas~ CST
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3/1/15 6:07 P

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Hugs to everyone. Hope everyone feels better soon.

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3/1/15 1:43 P

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Shari I am so sorry that the counts are not going up yet. I will keep that prayer going that you have some relief soon.
It looks like I am beginning a new flare with my GP. My tummy feels like it is shut down a bit and food seems to be sitting like a rock.
I am doing some cleaning today so I hope that my spoons hold out for me to finish. Fatigue stinks! emoticon

Nola

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2/28/15 11:23 A

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Dori is beautiful!

It's been awhile since I have checked in. For the most part, my GP is under control, not too many problems with that.

Still having problems with my hemoglobin though, been averaging about 3 weeks in between blood transfusions, but I wish I didn't have to have them so often. The problem is that my bone marrow is just worn out from all the chemo I've had in the past. I've been on Halotestin injections for a month now, that are supposed to raise my hemoglobin levels, but so far they have not made a difference yet. My oncologist says we need to give it more time to work though.

In the meantime, I'm having a tough time with fatigue, and I've had to cut back on my activity because of that.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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2/16/15 6:34 P

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I was finally able to post a picture of Dori. My helper came today and coaxed Dori out for a minute but Vicki is kind of loud so Dori went right back under the bed. I accomplished what I needed to do today but fatigue is closing on me. I think it will be an early night and a good book and a cuddle from Dori for me.
I hope that you are all warm and secure tonight.

Nola

Kansas~ CST
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2/16/15 9:36 A

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Nola, I hope you will post a picture of Dori, she sounds adorable!


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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2/15/15 5:25 P

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Sounds like a good way to spend the day. It has been really cold here the last couple of days. SO we have been watching TV and playing games.

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2/15/15 3:29 P

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Doing a little cleaning and adjusting in the apartment today. I am having a soup today and hope that my tummy is happy afterward.
Wishing you all a warm and safe weekend!

Nola

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2/14/15 8:12 P

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That is wonderful news!!! I am very happy for ya

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2/14/15 2:08 P

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I have my new fur baby. Her name is Dori and she is part Siamese. She is a Roly Poly where Keeper was sleek and long. She is 10+ pounds and such pretty markings. I can feel the stress ease with each time I pet her. I hope that everyone has a great emoticon Day!

Nola

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2/14/15 1:34 P

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Hope everyone has a great weekend!

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2/11/15 11:52 P

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Thank you for all of your kind thoughts. I feel that I should get a new fur baby soon as it seems so lonely here. I took the day off to deal with Fibro and a Migraine today. I slept a good part of the day and read the rest. I am catching up on my reading but putting castle chores off until tomorrow.

Nola

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2/10/15 6:39 P

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Hugs Nola

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I'm so sorry for your loss Nola. emoticon


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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Feeling a little lonely without my Keeper today. I miss his morning hijinks to get me out of bed so he could have my place. He did such funny things at times. He was totally in charge and he knew it. I am going to take his food to the animal shelter today and if I feel that it is possible I will visit the animals there.

Nola

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2/9/15 6:14 P

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Well she has IBS with constipation. And she is also the one that has Migranes. So you know that poor kid! I am glad that your IBS did not get worse after they pulled that meds. I am thinking alot of hers is brought on my stress or anxiety too!!!!

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2/7/15 11:41 A

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Once I knew for sure that I had IBS, just knowing that made me feel better; mine is aggravated by stress, so knowing that I didn't have something else more seriously wrong with me helped a lot. I was put on a medication called Lotronix for awhile, it's for people who have IBS with diarrhea. It really helped me a lot, then after just a few months, the FDA pulled it from the market. At first, I thought my IBS would get worse again, but it didn't; by then, I was better at managing my symptoms and had it under the control for the most part.

I always make sure I have some store brand Imodium with me at all times; I don't have to take it often, but it makes me feel better knowing I have it close at hand in case I have an unexpected flare up.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

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2/6/15 6:14 P

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So any tips on the IBS. Hope your slight flare up is gone! Shari Hope your doing better this time around. The PT is making mom really tired well that and the chemo. So they have moved chemo to everyother week now and not every week! Hope everyone has a great weekend. Always sending postive thoughts to you guys!

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2/2/15 8:11 P

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Pru my son has IBS too. Shari I hope that the injection goes well this time. Slight GP flare going on right now. Nausea is back.

Nola

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2/1/15 4:38 P

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Pru, I hope your mom does well with the PT, and that your daughter's IBS can be helped. I have that too, though it's pretty manageable now; I think the hardest part of it was trying to figure out what was wrong before I finally got my diagnosis.

Nola, glad you are enjoying the new place!

Since I posted here last, I ended up going to the ER last Sunday because of feeling weak and shaky from my anemia; it turned out my hemoglobin was very low. They gave me a blood transfusion and kept me overnight. But now I am feeling much better! I also will be getting my 2nd Halotestin injection tomorrow.

Edited by: MOM2ACAT at: 2/1/2015 (16:39)

My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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2/1/15 2:54 P

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Everything is in place and the apartment is finished. I am enjoying it. Had a couple of GP days this week due to being too full. The weather is crazy today. One minute we have hard blowing snow and then 5 minutes later it is emoticon This has been going on for about three hours.
The stress of moving has settled down. I am enjoying my new apartment and being warm.

Nola

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1/31/15 9:06 P

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Hope Everyone is feeling pretty good this weekend. Mom is going to start PT on Monday. She also only has 4 more chemo days. We took my youngest to a gastro Dr. They think she has IBS. So we are trying some new meds for her.

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1/21/15 6:09 P

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I am feeling better today and going through books. My PA took me to the store and then came later for a walk and we sorted books. I still have about 200 to put away and I am not sure where I will put them. I finally can get to me closet and the entry closet has only things that have to be stored and have been gone through. I have til next Wednesday to get it all done as Wednesday is the day to spray and Friday is annual inspection. emoticon
Shari I hope that the new treatment helps you. I am glad that you have not had any terrible side effects. emoticon

Nola

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1/21/15 5:54 P

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It's been a while since I have checked in here, so I thought I should post an update.

Hope you are feeling better Nola!

Still having problems with my blood counts; it's not the chemo this time, as the last chemo I had was October 30th. The problem is that my bone marrow is worn out.

My oncologist started me on a hormonal treatment Monday; it's Halotestin, and it's actually a form of testosterone. (Since my cancer feeds off of estrogen, this will work against the estrogen). It's not a cure, but hopefully it will slow down the growth of the cancer, and also raise my blood counts. It's an injection, and I'll get it once every 2 weeks.

The only bad side effect I've noticed so far was a very sore arm and shoulder that finally started letting up this afternoon. I was given my choice of getting it in the arm or the butt; I think next time, I'll request it in the behind; it might not hurt any less going in, but maybe the pain won't last as long.

I'm hoping the Halotestin kicks in soon on those blood counts, but I don't have high hopes with just having had one shot so far. My hemoglobin was 10 last week, and 8.8 this week; if it goes down again, I'm pretty sure I'll be getting another blood transfusion next week.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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1/13/15 9:43 P

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I am beginning to get more things settled. My PA brought 2 more small bookcases so I hope to find enough space for my books soon. Meeting with the old manager today for the final walkthrough was so stressful that I went into an anxiety attack and then a Fibro and GP flare.
I am hoping now that all is settled that I will be able to relax and enjoy my new home.

Nola

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1/12/15 6:52 P

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Nola, now that you are in your new place, hope you are feeling much better!


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1/11/15 8:11 P

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Hugs

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1/6/15 8:20 P

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I am so glad Pru. My GP is flaring some due to the stress. The OA and Fibro due to the cold. PTSD due to the anxiety. My alphabet is really active this week. 4 Days until I am warm!

Nola

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1/5/15 7:37 P

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That is awesome! I am sure everything will go fine! Mom is feeling a little better today!

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1/4/15 7:19 P

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6 Days until I will be sleeping at the new apartment. I hope that I am as organized as I feel. The problem of course is that I have to rely on others to get me there and move me. I only have in drawer left to pack in the kitchen. emoticon

Nola

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1/4/15 5:03 P

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How much longer now til moving day Nola?

We are in the middle of a weather system here, lots of snow and very cold; had about 5 inches overnight.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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1/1/15 5:12 P

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Cleaning and seeing a conclusion to some of the packing and clearing out of closets and shelves.

Nola

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12/31/14 5:31 P

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Thanks for the hugs! Hope everyone has a wonderful New year!!!!! My Aunt and her family are coming over and we are going to have dinner and play games

Edited by: PRUPLEBEAR at: 12/31/2014 (17:32)
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12/31/14 5:08 P

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I hope everyone has a nice New Year's Eve, no matter how you choose to spend it. Me, I probably won't be able to stay awake til midnight, but that is ok. It's so windy and bitterly cold here; I'm just looking forward to getting into bed early tonight with the kitties and a heating pad and doing some reading. And I'm so thankful that I don't have to go out tomorrow.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/28/14 3:18 P

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emoticon The cold weather also takes a lot out of us. I am glad that you are feeling better!
It is cold but with emoticon today. It helps me feel better just seeing the sun and Keeper enjoys it so much more.
I hope that we all find one thing to be grateful for today!

Nola

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12/28/14 2:44 P

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emoticon Pru

I had a few rough days since Christmas with my pain issues and fatigue; I think part of it was all the "busyness" of the days leading up to Christmas. I enjoyed the family gathering Christmas Eve, but I got tired out rather quickly and after 3 1/2 hours, just had to go home.

Feeling much better today though.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/28/14 11:41 A

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I am sending hugs to everyone. Live has been very crazy and mom is not doing so good. I find it hard to get on and spark. But know that I am always thinking of ya!

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12/27/14 2:12 A

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Wishing all a good week ahead. I am having trouble leaving my apartment lately. I think that it is just my PTSD
Shari I hope that your numbers are counts are up this next week.
Sheri, I am sorry that you had such a disappointment with your Dr.
My prayer is for all of us to have positive movement on the things that have brought us down the past few months. emoticon

Nola

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12/23/14 4:14 P

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Sheri, I just read your blog and I am so sorry. emoticon

I'm going to a cousin's house for a family gathering tomorrow night; it will probably wear me out, but I think it will be good for me to get out, this being the first Christmas without my mom. I plan to take a nap tomorrow afternoon which will hopefully give me a bit more energy, and Christmas Day, I can just stay home and relax.

Still have to get together with my sister and a couple of friends to have our little celebration and exchange gifts, but my sister and one of my friends are both sick right now, so it will probably be after the first of the year. I'm ok with waiting though; maybe by then my blood counts will be up a little higher and I won't be so tired.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/23/14 3:18 A

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Shari - I'm glad to see in your blog that the doctor has another idea he's going to try. I hope it works. I'm sorry the pain patch didn't work. We both understand pain after having to live with it for so long, and it sucks the patches couldn't help ease your pain more.

Nola - I hope they're working on some way to get you moved out sooner. If the place has some serious problems (like mine does) there are ways you can convince them to let you out of the lease to avoid the court's involvement, but it takes time, effort, and a LOT of phone calls to make it happen. I hope someone else can step in and make some other arrangement happen instead.

I'm super frustrated, hurt, and angry right now. I was told by other patients that the EDS specialist in Chicago writes out a 10-12 page 'user manual' type document including what other specialist need to know. After 6 weeks of waiting, and having to ask to get it sooner because the neurosurgeon was going to cancel my appointment tomorrow otherwise, all I got was a 5 page report that basically says I had an appt, I have EDS, and that I should do PT. 90% of it was just restating information that was given to him! He left out most of what we spoke about. There's nothing in there that says to other doctors that I'm not lying about the pain, the joint problems, or the co-morbid conditions, and completely ignores the nervous system problems. I wasted a year and a half waiting to see him, hours of flying and feeling like garbage to get there, and got less out of it than if I had just googled EDS. It feels like not only a complete waste of time, money, and resources to have gone there, but like I must be a complete waste of a human when others have gone for lesser problems and got 2-3 times effort from him. Why would it take 6 weeks for this crap? Honestly, he could've handed off most of the work to a staff member to type out most of it from the records he received, then taken a half hour to write out the rest of it.

It hurts so much because I tried to hope that he would be helpful, that seeing him would make a difference with the other doctors who know little and care even less. This is why I abhor having hope. Hope gets me nowhere. Having hope means I will be let down and disappointed. It's so much easier to have absolutely no hope and be totally surprised (and suspicious) if something good happens.

Last Monday I saw the neurologist I've seen a few times. He essentially said to stop coming back because he has no idea what's happening, no clue how to help, and no tests to run. Friday I saw a neurophysiologist who specializes in seizures. In early Feb he's having me do a 3-5 day test of an EEG while on camera 24 hours a day to see what they can find. I had this done about 20 years ago and they said I had petite mal seizures that I would grow out of, but I didn't - I just learned to control them - and that I have extra activity in one lobe of my brain but they didn't know what that meant. He's going to see what he can find. What he should get is some nastiness of seeing what happens when I black out and collapse, when blood backs up in my brain or drains out of my brain, when my eyes start moving around in my head uncontrollably, when I have a massive migraine, etc. Tomorrow I'm seeing the neurosurgeon who has made it clear he absolutely has zero interest in seeing me and is probably going to immediately dismiss me after he sees this pathetic excuse for a report from the EDS specialist. It doesn't matter how bad things get for me physically, it has to be deemed my fault and ignored by everyone because I'm not worth the effort. I'm so sick of all this!

What can I say? Just another crap shoot of a holiday gift for me. This must be my lump of coal for Christmas.

~ Sheri ~

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12/18/14 2:17 P

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emoticon Sending everyone positive thoughts and prayers.

Nola

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12/17/14 4:29 P

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Thank you Nola.

I hope you hear something positive now about your case since turning it over.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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Shari you remain in my thoughts and prayers. I hope that the Dr. can find a new something to try. emoticon emoticon
I have turned my case over to Adult Protective Services. My therapist wrote a letter but the Management company and owner are ignoring it.
Sheri I hope that you have had some good developments in your case.
Wishing everyone a good week ahead.

Nola

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12/15/14 6:48 P

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I had an oncologist appointment this afternoon, a followup on the CT scan I had on Friday. It was not good news; the cancer has spread a little bit more in the liver, and now it's in the lungs too. The biggest problem is that my bone marrow is getting "worn out" from from all the chemo I've had the past, that is why I've had such a problem with the platelet counts these past weeks. My doctor told me we may be running out of options as far as treatment goes.

He wants to do some more research though, so I am going to see him again next Monday and I'll find out then how we will proceed from here. If he does continue with the chemo, I will be having that the Friday after Christmas.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/13/14 3:27 P

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Sheri, I agree with Nola, it sound like this woman is really in your corner; even though you need a lot more people to be there, at least this is a start.

Nola, I hope that you will be able to move out early.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/13/14 1:44 P

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Shari I hope that you are feeling better soon. Someday they will find better ways to see our insides without making us go through the added chemicals to our body.
Sheri I hope that you have found someone who can help you. It sounds like this lady is really in your corner. I know when you have lost trust however that it is hard to trust again.
I have given up here in hoping they will let me move early. My therapist wrote a letter but I don't hold much hope.
May all of us have a better year in 2015.

Nola

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Shari - I'm sorry you had a bad reaction to the dye. It's not fun when your body doesn't want to deal with a test or procedure. (A few months ago I had an MRI on my head and neck and just seconds after they moved me in I got claustrophobic and panicky, even though I never have before. They had to pull me out so I could prepare myself better because my brain just didn't want to cooperate.) I hope they got the info they needed and you don't have to go through it again soon. Your body is already dealing with so much, it just probably didn't want to go through anything more.

Thinq - I'm sorry your partner has struggled so much, both physically and with medical personnel. Unfortunately, too many doctors and staff know too little about GP. Many of us have gone through the same thing, and we learn that the person who has to take control of our health is us. We have to learn what is best for our bodies (there are so many causes of GP and each person's body and symptoms is unique) to live the healthiest lives we can. Here, we do our best to help guide and inform others so they can get on the path to being healthier. We don't have all the answers, but there is info we can pass on.

Yesterday I FINALLY got in touch with someone at the county who can answer some questions (instead of transferring me all over the place - which happened the day before until I finally begged someone to stop transferring me and just give me an idea about who could actually help). She's a director, so she's one of the supervisor's bosses. I think she listened and somewhat understood that my case is complex and getting worse, while the people paid to find me help are just not doing anything. I asked her how can I fire my social worker and CADI worker and find replacements, because it seems counter-intuitive to have them find their own replacements. She asked that I give everyone one more shot, as her and her people are trying to figure out how to help people like us who don't fit neatly into the little boxes of problems they help with. Today I spoke with my worker's boss (the director emailed her yesterday about it, too) about my lack of confidence in their abilities to help me. After a long discussion, we agreed that we will try to get another meeting with the county in early January. My workers will need to step up - think out of the box, do some research, ask questions, and become stronger women who can help me instead of just passing the buck and asking someone else to figure it out. If they don't show me by then that they can be strong-willed and creative thinkers in order to deal with my unique situation, then they will be fired and I will try with someone else. If I end up having intense treatment or even significant surgery to deal with my neurological issues, I need people who are capable and strong to do their jobs, instead of me doing it for them. (It really scares me to think that if I can't take care of myself that they will just let me fall through the cracks.)

I also got copies of legal documents from my LTD lawyer, so I talked to him. The Hartford responded they didn't owe me any payments, as expected. So now the focus is on getting a settlement or going in front of the judge in mid-February. I briefly explained there's a chance that I could have surgery or treatment and not be able to participate, so he's going to have a friendly chat with the opposing lawyer to see if he can speed up settlement talks and possibly give notice to the judge that waiting could delay necessary treatments/procedures, so that the case is sped up. We also considered some potential settlement figures, and they're close in line with what I was assuming they would be. Unfortunately, if they go on the crazy low end and I still have to pay lawyer fees, I could end up with almost nothing. At least the money shouldn't be taxable!

I've been realizing lately that the situation is so intense that my emotions have become palpable. I'm constantly on edge. I'm already a broken, shattered, bare-bones shell of who I once was, but things continue to get worse or at least more complicated. Though maybe if this continues the fractured parts of me and the intense emotional energy will create a poltergeist that will attack anyone who threatens me. haha If only! (I've been watching a lot of Dead Files lately.)

I wish everyone a peaceful, relaxing, and happy belly weekend.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


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12/12/14 5:51 P

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Had to do another CT scan today; bit of a rough morning. With the GP, it's not easy to chug down those barium shakes, but at least this time, I did not throw up the barium before I left home. Didn't do so well with the actual scan though; shortly after they injected the dye, I got sick, and I ended up wearing some of it because the tech did not get the basin to me fast enough. I got through it though, and after I was home for a few hours, I started feeling better.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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12/10/14 8:22 P

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Sheri emoticon on the good news! emoticon

Nola

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12/10/14 6:36 P

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Sheri, I'm so happy that you finally got some good news! I hope there is more to follow.

Welcome to the team THINQ! My GP was caused by radiation I had for cancer treatments; it's surprising how many people in the medical field really don't know much about GP.

My chemo was postponed again this week because of the low platelets; once they are up high enough, my doctor is putting me on a different schedule for the chemo, just once every 28 days instead of my current schedule; hopefully, that won't be so hard on my blood counts and I can stay on a regular schedule instead of having to keep delaying my treatments.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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