[patti]

Hi Ani,

My MIL is taking 1 tablespoon of black sesame seeds (found in the foreign foods aisle) and juicing 1/4 of a pineapple a day. It did a good job of boosting her platelets (we noticed the difference right away). She’s been going up about 2000 a week. 59K seems good to me but I guess because mom has been below 20K forever.

Patti

[patti]

Congrats, Suzanne! You must be on top of the world. Now’s as good a time as any to get healthier.

Patti

[patti]

Thanks for all of your responses. I guess maybe it’s different with every doc. Like I said, not that it really matters. I was just curious.

Terri, I just saw that your husband has gone almost 2yrs with his MDS. That gives me great hope for mom. She was dx in 8/04. Almost a year. We thought she only had about 5-6 months. We’re also doing the natural thing and finding it works well.

[patti]

Kathryn,

Some doctors are so arrogant, huh? My MIL’s is also. I would just encourage you to advocate, advocate, advocate for your dad. I have to for my MIL. When I disagree with the doctor, I let him know. Can you get a second opinion while he’s in the hosp.? I would if you can swing it. The issue of not taking all of his symptoms together is a biggie. Doctors seem to move from one symptom to the next treating them individually without considering them altogether. I have found the web priceless with info. Maybe you can research and ask the doctor about different things you find. That’s what I do and although the guy is still arrogant, at least I’ve been able to get them to look at other stuff when it’s necessary.

Hang in there,

patti

[patti]

Sorry I’m just getting back to you all. I don’t get to check this list very often. Neil, good idea about the Red Cross. I will call them tomorrow.

Yep, this guy is a jerk. The reason we’ve stayed this far is that mom actually sees the nurse practioner who is really good and willing to do anything we want. But, she has to run everything by this guy so he has the final say.

Jim, we are at Providence Portland right now. Who do you see at OHSU? Do you like him/her? I think mom would be hesitant to change right now because she likes Bonnie so well. Also, her insurance is a providence plan so she has to stay within that system – I think.

Neil, is he lying when he says mom will have to pay for it? Mom has medicare. My understanding is that if they pay for it that’s just how it is. I’m assuming once the doc gives his okay then he has no say in how it’s billed, etc. Am I wrong?

Ellie, I got the pineapple and black sesame seed info from a gal on this list. I’ve already forgotten her name. Marie, maybe? My memory is shot with everything that’s going on. But it works for pulling up the platelets! Not to mention who doesn’t like fresh pineapple juice?

Thank you all for your help. You guys have been lifesavers in helping me to keep my MIL healthy and safe from these doctors. Thank you.

patti

[patti]

This might be primative but my doctor always recommends 1 tsp of benedryl mixed with 1 tbls of cherry maalox. The benedryl sort of numbs the pain and the maalox coats the throat. Maybe this wouldn’t apply here though.

[patti]

My mother-in-law in having a transfusion this friday. Her Hgb was 7.4 today and her Hematocrit was 22.1. She swears she feels just fine. When she was diagnosed she was 21.7 and had no idea she was sick. She felt good. It’s either all of the vitamins, minerals and juicing she’s doing or she’s a really good liar. Although, I think today she looked terrible (even though she swears she feels fine). We only transfuse out of concern that she’ll get too low and won’t be able to get back. We’ve never been able to transfuse based on how she feels (or she’d never get one). When she hits Hmg of 25 we start talking tx (about 5 wks between).

Patti

[patti]

Please add our names:

Helen Steele – Scappoose, Oregon
Ron and Patti Steele – Scappoose, Oregon

Thanks!

[patti]

Kristy,

I had to ask my MIL doctor’s this question last week. I wanted to know how we would know if mom had progressed into leukemia. She said that when the white cells take a large sudden jump then they look to see if its gone into leukemia.

It would be helpful if you have some baseline wbc numbers for your mom. Was she at a certain level for any length of time? If she was at a very stable level then I would ask the doctor to check for increased blasts circulating in her blood. This might also indicate a progression in AML.

I hope this is not the case for your mom but it would help to ask. Like I said, we just asked our doctor the exact same question about mom’s wbc’s.

patti

[patti]

Suzanne,

You are very kind. I don’t know how lucky they are but I know I have been blessed beyond belief by having my MIL. She’s been a mom to me for 10yrs. More then my own mom. Maybe that’s why her illness is so hard. I cherish every moment I have with her. I know my SIL will do okay since my kids are still little. She plays very well with them. But it still will be a huge adjustment for her. Well, I will try not to worry so much about what’s ahead but enjoy what we’ve got right now.

Take good care!

Patti

[patti]

Thanks, John. We’ve really seen that its been prayer that has sustained us over this past year. Knowing that God never gives more then we can handle, we move ahead.

Blessings!

patti

[patti]

Kathryn,

My mother-in-law is on supportive care only and she has found she feels her absolute best when she’s eating a very good diet. No sugar, no white flour, lots of fruit and vegetables. She also tries to get some fresh air everyday. That’s hard here in rainy Oregon but she goes outside in her yard even if it’s just between rain showers for a few minutes. There’s something about fresh air that helps the body feel better. Mom is grateful she feels good because like your dad, she doesn’t have much in the way of treatment options. Mom also takes a lot of vitamins and minerals to just strengthen her body. If you could find a good naturepath that works with cancer (doesn’t really matter what kind), they’ll just know what kind of supplements he could take that would help him feel stronger (ie. multi-vit. no iron, B12, etc). The thing mom has been most grateful for is that until this past weekend she has felt terrific. She was diag. is Aug. 04 and really has felt good since then and we really attribute it to her healthy eating, sunshine, vits., etc.

Hang in there, Kathryn. This is a hard time. I understand your worry. Take a deep breath and pray.

Patti

[patti]

Thanks, Jim. Mom takes a good one. We found a guy in CA that sells a probiotic with 16 different strains. That’s the most well rounded we’ve found. Definately a must for anyone – not just those that our sick.

Patti

[patti]

John,

I understand what you’re saying. I guess for us (me) there are so many things ahead that I’m trying to prepare myself both mentally, emotionally and spiritually to take them on. Mom and are born again christians and as she has so aptly stated, she has no fear of going home to the Lord. It’s just that she has always prayed to be able to care for her daughter until her daughter’s passing. Her desire to stay here is for her daughter more then for herself.

On my side of things, I’m forcing myself to see beyond the healing to what I will face eventually, and that’s the care of my 47 yr old SIL. She has the capacity of about a 4-6 yr old. But I’m a homeschooling mom of 3 small kids (7 and under) and also the secretary for my husband’s home business. So for me, the Lord has slowly been showing me that mom’s time is short. Not so much giving me a date – but letting me know that I need to prepare my heart to become a mom to another “child.” Does that make sense? We still pray for healing and look for God to take care of all things, I’m just a planner and trying to at least prepare (if that’s possible) for the change my family is about to go through. How will I do school with my little ones? How will I handle the business stuff? How will I take time for SIL’s own grief? So much. And I guess I’m guilty of feeling like the Lord isn’t choosing to heal mom and her disease is getting so progressively worse it’s hard to see anything else. And yet I believe sometimes God takes us to the brink before He heals. So, maybe I have lots of work to do spiritually.

Glad to know there are other believers here.

Patti

[patti]

Marla,

I just saw your post today. I’m going to print it for mom. I think I will suggest she eat foods high in Vit. C and forgo the supplements. She and I agree with you. Whole foods are the way to go when possible. Thank you so much for your input! You have no idea how much it has helped me (us)!

Blessings,

patti

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