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Sat Jan 7, 2012, 08:18 AM

White blood cell count very low

Last edited Sat Jan 7, 2012, 09:15 AM - Edit history (1)

Well, I guess I was on the right track keeping people away from her. When I got to the hopsital yesterday morning, she was isolated due to low white blood cell count. Everyone, including all hospital staff, are required to wear protective masks when entering the room she is in. She wasn't looking or feeling well at all. They gave her some really high powered drug to help increase her WBC count and also gave her some Marinol to stimulate her appetite. Marinol? Now we're talkin! She ate more solid food yesterday than she has eaten in a week. Anyone who says marijuana has no medical benefit are fools. She looked much better when I left last night, and she was more lucid, yet still very weak. She remains isolated until they can get her resistance built back up.

She told me she had been hallucinating, but I think what she was having were very vivid dreams, a result of the drugs she has been given. We all know what hospital food is like, usually bland and tasteless, but what they served her yesterday actually looked and tasted better! Heck, even I wanted to dig into some of it. She is on an unrestricted diet, so she can have anything she wants.
Of course, I would love to go out and get her anything her heart desires, but I could not risk bringing in pathogens from an outside source. In this day and time, some people go to work out of necessity, regardless of their health issues.

I'm hoping her counts are up when I go in today, and she continues to desire and eat more solid foods. They can give her nutrition via IVs, but she needs her appetite restored. I'm going to request a lifetime prescription for her to Marinol (snickers).

As Slipslidingaway said in another thread here, it has really been a rollercoaster ride. Right now, it's one foot in front of the other, one day at a time. Each day seems to bring a new challenge. I hope in a few days she will be able to come back home, but I want her health stabilized first, no matter how long it takes. I will have help when she finally does get back home. A home health agency will provide an RN to monitor her health and therapists to assist in her recovery, and they will provide any needed durable medical equipment for her recovery as well as aides for bathing and hygene issues. Kinda makes those $25K/yr insurance premiums not so bad, now.

Hope there's more good news to post when I return this evening. I truly love you guys for your support and well wishes. It is so nice to have a place to share your emotions and frustrations with folks who have gone or are going through the similar experiences. Thank you all!

Uben

edit: While Carol was sleeping yesterday, I went down to the van to catch a short nap. As I was popping a DVD into the TV, I saw a chicken right in front of the van on the hospital parking lot. Now, I live rurally, so chickens are not uncommon to see cavorting about, but this was in the middle of a large city! It was dusk, and I also noticed other birds flying into the youpon trees in the lot to roost. Then I looked around and there were few trees to be seen anywhere, so I guess they just use what's available. Then, the chicken flew into the tree right in front of me to roost for the night! It was there when I left a couple of hours later. Weird.

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Arrow 12 replies Author Time Post
Reply White blood cell count very low (Original post)
Uben Jan 2012 OP
cmd Jan 2012 #1
Irishonly Jan 2012 #2
slipslidingaway Jan 2012 #4
Uben Jan 2012 #10
slipslidingaway Jan 2012 #3
Uben Jan 2012 #5
Uben Jan 2012 #6
Irishonly Jan 2012 #7
JohnnyLib2 Jan 2012 #8
slipslidingaway Jan 2012 #9
maddezmom Jan 2012 #11
Ecumenist Jan 2012 #12

Response to Uben (Original post)

Sat Jan 7, 2012, 10:50 AM

1. Exactly what happened to me

The hallucinations were the worst. After three days I was doing much better. I'm so glad Carol is getting better. Thanks for the update.

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Response to Uben (Original post)

Sat Jan 7, 2012, 10:52 AM

2. You are her best advocate

I am so glad Carol is getting the medication she needs. Please keep us posted.

I have been quite ill the past couple of days but I do keep checking in to see how everyone is doing.

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Response to Irishonly (Reply #2)

Sat Jan 7, 2012, 11:09 AM

4. Feel better soon :) n/t

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Response to Irishonly (Reply #2)

Sun Jan 8, 2012, 08:39 AM

10. I so hope you get to feeling better soon

You have been such an inspiration to me these past couple of weeks. I don't know what I'd do without you guys here pumping me up when times are tough. I have many friends offering support, but it's here I can spill my emotions when I can't seem to get those hard words out. It's easier to write them down than vocalize them sometimes.

I have been here at DU a long time, pretty much since it began back in 2001, but never have I ever felt as connected to a group of people as I do now to those in this group. You give me hope and inspiration....and most of all, the strength to carry on the battle against this disease that ravages my wife's body. I wish I could just scoop you all up and hug you, and show you how much you mean to me. When this stuff reared it's ugly head again, it seems like time just stopped. I have spent countless hours trying to understand what is happening, what to expect, and how to go forward. Having others who are going through it, or have gone through it, or have loved ones who have gone through it, to talk to is priceless.

Everytime I light a candle, I think of you. I stare at the flame and give thanks that there are folks llike you out there who care about others, despite your own illness. So you do whatever it takes to get better,and know there is someone out there that you have touched.

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Response to Uben (Original post)

Sat Jan 7, 2012, 11:07 AM

3. Not such a bad idea for everyone to be wearing masks around people ...

with low white counts, especially during this time of year. Also I just buy the cheap toothbrushes and switch them often when the WBC and ANC are low. Hoping that the drug to increase the white cells (Neupogen or Neulasta maybe) works quickly. Glad to hear she is eating more! When you get home, use the diswasher for everything possible and they told us no sponges, so we use lots of paper towels. You might also want to ask about following a low microbial diet for a little while or just be aware of it when you get home. Be careful of fresh fruits and vegetable and undercooked meats and fish, take out food etc.

http://www.livestrong.com/article/493502-low-microbial-diet/

The IV Voriconazole made my husband "halluncinate" when he was on it the second time, although he was also on morphine at the same time, maybe the combo???

They did warn us about Voriconazole, not sure if she is on that med or not. He said the hallucinations were not scary and he snapped out of them quickly, but they were very real when they happened.

Sounds like she is making progress and happy to hear you will have help at home, best to you both.

P.S. If you think she is up for a little exercise, we purchased one of these for use at Hope Lodge and it is now near a couch and still gets used when reading a book and talking on the phone. They had one in the hospital room during transplant and it is not too tiring.

MagneTrainer ER Mini Exercise Bike - Includes Large Pedals with Velcro Straps
http://www.amazon.com/MagneTrainer-ER-Mini-Exercise-Bike/dp/B000V2IT78/ref=sr_1_2?ie=UTF8&qid=1325945970&sr=8-2


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Response to slipslidingaway (Reply #3)

Sat Jan 7, 2012, 09:45 PM

5. You pretty much said just what the doc said today

We have an exercise room with a bike, inversion table and treadmill, so when she's ready we'll get her goin!

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Response to slipslidingaway (Reply #3)

Sat Jan 7, 2012, 09:53 PM

6. Much,much better today

Today marks a week since she took the first chemo treatment, and the doc said that was usually the worst part of it. While her WBC count is still low, it is improving and they gave her another shot of the Neupogen (sp) today. Doc said her liver functions were coming back, which means the chemo is doing it's job! She can eat anything that is not raw, so she made me go get her a burger at this restaurant that has great mesquite grilled burgers. Her appetite is coming back, her color is back, and she actually walked the length of the hosp. floor she was on with the therapists. What a change a day can make! Yesterday she was about ready to give up, and today she was arguing with the staff, which tells me she's feeling much better.

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Response to Uben (Reply #6)

Sat Jan 7, 2012, 10:43 PM

7. Fantastic news, Uben

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Response to Uben (Reply #6)

Sat Jan 7, 2012, 10:44 PM

8. Great to hear!

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Response to Uben (Reply #6)

Sat Jan 7, 2012, 11:29 PM

9. Wonderful news ...

usually just a few shots of Neupogen does the trick, still be careful and make those burgers medium/well done Wash fruit and veggies well and peel the skin or at least cut away the stem portion. And be careful about take out food, we're still not there yet, except for a pizza that goes directly into the box and is not cut ... and expensive restaurants where they most likely cook the food to order. Hopefully you'll not have to worry about that for too long! Neupogen is the drug they give to stem cell donors to stimulate the marrow before donating and then also give patients going through intense chemo and after transplant to push the white cells to perform when the neutophils are zero, Neulasta is a longer acting form of Neupogen.

Glad to hear she is arguing with the staff and that you have some exercise equipment at home. Try and take care of yourself as well









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Response to Uben (Reply #6)

Sun Jan 8, 2012, 07:07 PM

11. Super news

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Response to Uben (Original post)

Mon Jan 9, 2012, 08:30 AM

12. Uben, Wheatgrass, BELIEVE IT OR NOT, protects the bone marrow

from damage from Neutropenia. When I found out that I would be taking quite powerful chemotherapy drugs, I started doing research to find what I could so -SAFELY- to help my body avoid as much of the side effects as possible. Now, there's only been one relevant PEER reviewed study and it was focused on breast cancer patients BUT the outcome was so dramatic that the authors went on to say that due to the mechanisms that wheatgrass seems to exert on the body to help it undergo chemo and radio therapy, with VERY few exceptions, wheatgrass could and SHOULD be used with cancer treatment as a VERY valuable addition.

I know first hand as I found this study and started taking the wheatgrass, HEAVILY. Although I was required to take blood draws 2X a week because my particular cocktail usually causes at least mild neutropenia and anemia, my counts were PERFECT!! My doctor was shocked considering the fact that I was so debilitated when I began radiotherapy, (25 cycles) . After 3 cycles, doctor told me that he was no longer worried about WBC drops.

The study, as I said was peer reviewed and you can read a summary... http://www.FYIliving.com Once there, do a search with this quesry: WHEATGRASS BENEFICIAL FOR CHEMOTHERAPY PATIENTS.

I treat at Cancer Treatment Centers of American in Goodyear Arizona, (Phoenix, Arizona) and they have a juice bar where there are green drinks and wheatgrass shots, (organic, not the fungus ridden shots you get at your local juice bar). IT works...

Now, are you in a medical marijuana state? If you are, trust me, pure THC capsules and/or hashish capsules are MUCH BETTER THAN marinol. I DO NOT SMOKE anything so I use edibles or concentrates. MEGACE is as good for appetite as medical marijuana. Please, PLEASE ask doctor for Megace once she finishes marinol. I swear, Megace and/or medical marijuana will have her eating a hoe in the wall, trust me.

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