[Stephanie]

Wow, Alex I just read my entry from the other day and it sounds so horrible! I guess I should just keep my opinions to myself while I am mourning. The information/meaning I was trying to get across to you was that I feel great to have had MDS for over 7 years. And I don’t expect to be kickin the bucket anytime soon! I plan on seeing at least 4-5 of my own grandchildren! I run a multi-million dollar corporation, while under going my regular medical maintenance, take care of my husband and children etc. There is no doubt about it this is a scary disease and it needs to be taken seriously, but WE CAN BE long time survivors!
With stem cell transplants coming a long way they seem to be less to tolerate then the full bone marrow transplants. Everyone is so different and their treatment and the way they respond to the meds-
My mother that has passed away was a life time heavy smoker she was 62 years old she went through 3 chemo treatments in 3 mths(1 before when she went into remission) a lesion on her colon, pneumonia, fungus everywhere, a blood clot in her leg, a lot of comlications!
I appologize for sounding so matter of fact and horrible on the earlier entry, Please Forgive me, everyone! My mind has been in a cloud, a fog and I had no business even answering poor Alex I should have just updated moms condition and gotten off the forum!

[Stephanie]

Mom passed this morning at 2:05 am we were at the hospital most of the night and because my RBC’s are low I ended up sleeping the day away. I am still just emotionally and physically drained. We had planned on leaving to go to Mission, Tx this morn at 6 am, my dad and brother went ahead and left. My brother lives here, in the Houston area as well as I (they were staying with him b/c he doesn’t have all the rug rats that I do, I have 5 children, 22-11) I stayed to rest and let my husband coach my son’s 1st baseball game tomorrow morn.
Even though she was not my birth mother Glenda Woodward meant the world to me. She was a strong Christian lady and if it wasn’t for her I probably would not have the relationship with Christ that I have today! Thank you everyone for your prayers. Please keep praying. Pray that my husband and I, then my children who are traveling seperately, 700 miles round trip, + my brother and sister-in-law, will be returning and a bunch of other family members will be on the Texas roads these next few days & over this week. Please Pray for Safe Travel!

Stephanie Wood diagnosed MDS 7-2000
Glenda Woodward diagnosed MDS 05′- 3/23/07

Yes believe it or not my maiden name is Woodward. As odd as it is!

[Stephanie]

Hello Alex, It sounds as tho your mother might be about my age or a bit older? I am 40, I have a 22 yr old son. I was diagnosed with MDS 7-2000 and the Dr that diagnosed me told me I had 3-5 yrs to live. I have found out since then and thru this forum that there is no way to know how one will respond to a particular medicine. And there is truely no way to know how long you may have to live or if the meds will put you into remission, if you will stay in remission etc. My step-mother of 30 yrs. was diagnosed 2 yrs ago went into remission almost immediately. I have never been in remission, however, she will be passing any day now.
The best thing is to get a second opinion and do your reasearch, this forum is a great place to be!

[Stephanie]

Just a quick update. My father has hired an airplane ambulance to fly my mother to Mission, Tx. from the Houston area where she is currently in MD Anderson hosp. and have her in hospice care in their living room. Her platlets are 2000 we have lost count on all of her counts they are so low it is absolutely rediculous and he has decided it is best to discontinue any type of maintenance, we will follow them down tomorrow, she will have her lil doggie in bed w/her, and all the flowers in the room she wants. And the pastor singing and her favorite music playing as much and as loud or as little as she wants.
She now has bed sores all over her and a blood clot in her leg. How she can get a blood clot in her leg with platlets @ 2000? I don’t understand? But, anyway, She will be walking and talking with Jesus Christ very soon!
Thank you all very much for your well wishes and your support. Stephanie Diagnosed MDS 7-2000

[Stephanie]

Thank you Russ. I just returned from the hospital. No change. My father is frustrated and quite frankly fit to be tied! The Drs are doing absolutely nothing at this point! They are now administering her no chemo, they are not removing the respirator/feeding tube, they are not moving forwards or encouaging us to make peace with the unplugging of the machines.
Thank you for your prayers and support.

[Stephanie]

Thank you for the advice Barb. The Dr. Had originally given us Mon. as the day to make the decision about unplugging the machines and the feeding tubes, however, because he has seen some improvments he is going to postpone that dreadful day a while and see what happens. Because, while she is on the ventilators and feeding tubes and all the machines are sustaning her life they are still giving her chemotherapy and trying to get some that get the now AML to respond.

[Stephanie]

Thank you Zoe.

[Stephanie]

My step-mother Glenda has been married to my father for 30 yrs she was diagnosed w/MDS 2 years ago. She got into a study just under the wire, went into remission, came right out of remission & found her sister to be a 10/10 match and decided to do a SCT. On her 2nd round of chemo (the family wasn’t sure of the name) it caused her a lot of problems and was elevated to AML & left her on a respirator due to a fungus on the lungs (she is on her 3rd round of chemo now). Please keep her in your prayers as it has already been mentioned by the Dr.s that the family may have to make the decision whether to unplug the machine.
Thank you!

[Stephanie]

Dear Sandya, I agree with Russ, in that it is probably his platlets. I have had large markings such as these just appear without ever hitting or touching my body in that area, I have also experienced awaking with quarter size open sores on my face, nose, neck and body? I think it has something to do with the lack of nuitrients in the body/blood? I don’t know, but it certainly is freaky!
I also push myself as far as I can before getting a tx! Please if he is experiencing dizziness tell him to go ahead and get his tx. It will do him good.

[Stephanie]

I don’t know you very well b/c tho I have been around a long time I went off & built a corporation, but your counts seem to be great! And your report was very encouraging! That is great news! I love to hear good news! When my step-mom was diagnosed & went into remission it was so wonderful, but she fell out of remission so fast & is now going trough a SCT.
My prayers will be that your counts will stay on the up side & there will be no need to visit the transplantation department any time soon!

[Stephanie]

Dear Eve, Though I don’t know you well, we are certainly connected by this disease and it’s effects. I was SO SORRY to read of your recent loss. May God grant you the peace you need at this time of mourning.

[Stephanie]

Sorry Mark I am going to have to get into gear and figure out this web-site again. I hit the wrong button again and ended the private e-mail before I was finished and now I have to run and go make some $$. I have a salesman taking off today-I usually don’t have to work on Saturdays. It will only be for a couple hours. Anyway, I am strongly believing in prayer that your counts will continue to grow in numbers. I will figure out the system later and finish my message. God Bless. We are workers together with God. 2 Cor. 6:1

[Stephanie]

Yes maam, I am so sorry to read that. I was just reading through some past entries and read that and skipped right back over here to appologize. It has been a while since I have navagated this web-site, so when I went to answer your question I hit “full reply form” by accident, which wasn’t a big deal except for the fact that it took all of the personal information about you and your husband off of the bottom of your last entry for some reason? Therefore, I could not read that info for myself without sticking my big ol foot in my mouth. I just could not imagine living your life with a spouse and loosing them! I truely feel for you and Please know from the bottom of my heart that you will be in my thoughts and prayers. Are you in any kind of a local support group? Besides this forum? I am one of the leaders of the Cancer Resource Team at our church. It is great for support, to get together and help others. For me to be able to help others is a great way for me to focus on the positive. It is a huge church, 12,000 members. If someone gets diagnosed w/cancer and needs someone who has been through it to talk to there we are, then there are also our spouses, who help giude the caretakers and make sure they get what they need and that kind of thing. It is really great! Take care of yourself! God Bless you!

[Stephanie]

Hello Sarah, I think I remember you from writing back when I was 1st diagnosed? I have also been searching for a donor match since the onset of this horrible thing~ since I was not involved in the work place I had a lot more time to research the disease and communicate with others. I have also found that for me…(everyone is so different) if I keep the facts of my illness out of my sight and mind as much as possible and focus on the positive things of Life, I do a lot better. Not that I am in denial, I just spent the 1st 2 yrs of diagnosis in bed and connected to IV poles, constantly exploding vein after vein (very few good 1’s left) and trying things the way the Drs. wanted to do it (trials). I’ve decided the best way for me until something better comes along, is supportive care. I have MDS-RAMD. Very low and very erratic white, red and platlet counts as well as 11-15 other characters in my blood. If there was a stem cell or bone marrow match I would do a transplant in a heart beat! I’m young and I have trained my mind and body to handle the low counts w/o having the feeling like I am dying! (like I did at 1st) I actually feel somewhat normal if I can overcome the pain on a good day. I guess its just because my “normal” has changed so much. For this I have had a Itrathecal (sp) Pump implanted in my stomach that feeds a very small amount of meds from my spine to my brain. It works great compared to the weight of the heavy drugs I was on before the pump. On another note I have had a problem w/repeated meningitis, however, the Drs. believe it may have something to do w/another underlying problem. How are things going for your husband? He is fairly young for the disease also.

[Stephanie]

Hello Wendy, Your father is fairly young at 57 to have MDS. He is stil young enough to have hobbies, desires, dreams. I am a young 40 and have had MDS since 2000. Neil gave some great advice, I spent approx. 200 days out of the 1st 2 yrs diagnosed with MDS on my back attached to a “charlie pole” in a hospital. It is severly depressing, the entire process of it all. Neil hit it on the head when he spoke of an experienced dr. This is key. And one that will talk to you! I had the hardest time, though I was going to the BEST Cancer Center in the country my Dr. would not inform me of what was going on! So I requested a new dr. They told me they all worked as a team and I could not have a new dr. However, the dr. in the transplantation department is completely the opposite and fills me in on everything! (tho I have no donor match found to date) I also have since complained about my physican so things are better there. But this is a key factor! Secondly, I decided I was doing myself, husband, children or the Kingdom of God absolutely NO good laying in bed every day! I also have ruptured discs in my back (I was going in for back surgery when I found out my platlets were 11,000+ other stuff) So I have since pulled myself up by the boot straps and re-opened my retail flooring store (which I had to close when diagnosed) from 1-2003 to the close of books 06′ we have grown to a muti million dollar corporation!
It has absolutely nothing to do with me! I am here to do work unto God! This is what your father needs to realize. We are here but for a fleeting moment in time. It seems as though he has just gotten caught up in the day to day affairs of getting medical treatment. What I did is; I only go to MD Anderson hospital when I absolutely have to for appointments. I run down to my local filling station-Northwest Cancer Center for my blood transfusions. Then I spread my appointments as far out as I can.
My step-mother was diagnosed a year and a half ago with MDS, there are a lot more studies going on for her age and she barely got in one under the wire and went into remission immediately. However, she came right out of remission. She is now undergoing a stem cell transplant. Please keep Glenda in your prayers!
I have to get tx monthly to every 6 wks-Procrit + I have been on the nuelasta shots and they have had me on steroids for my platlets for 5 years.
I can wait a pretty long time before getting a tx! I am terrified of iron chelation! I DO NOT want that! So I’ve trained my body to with stand a lot! + the new energy drinks work good for an occasional pick me up. My dr. says as long as I drink them in moderation it is ok!
What did your dad enjoy doing before this dreaded disease? I would try and get him interested in his hobbies. The things he enjoies doing. He is human and has hopes and dreams, fears and weakness just like us all. This is very scary stuff. Watching someone go through it is scary but if I was to be honest with you and with myself the feelings of dealing with the pain, weight gain, and just the day to day knowing that I might not have a normal life span is a lot to take. It takes time and a lot of constant prayer!

[Author]

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