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Date Posted: 17:35:04 08/03/13 Sat
Author: GoodWillTalking
Subject: Raven Update 8/2/13

Hey Guys,

Haven't felt well in a very long time. Good PET Scan, Bad PET Scan, Gleevec or no Gleevec, the chemo's have torn me up. I barely get out of bed these days. My bones ache and throb. I am so fatigued that when I wake up in the morning, I feel like I need to go back to sleep again in a few hours. Blurred vision, muscles feel like they are on fire, bones throb like crazy, stomach always hurts, and the Gleevec has caused severe edema, which is a known side effect that can become severe (I am getting a great deal of swelling from this miracle drug). The Gleevec is helping to fight the cancer, but all this chemo, and the fact that I must take chemo every single day of my life now in pill form, has taken a serious toll on me. The quality of life is just as important as life itself. Right now, I am merely existing and not living. I really am in constant pain (not good, not fun). My long time Oncologist has abandoned me it seems. John and I are devastated and confused. John has run out of answers as to why we have not heard back from him again. He swore he would never abandon me, but something has happened, and we have racked our brains and can't come up with a viable scenario (he said he was going to call me back the next day when he got a copy of the CD with all of my pictures from the PET scan, and that was well over a month ago).

We have left several messages without inundating him, spaced apart. John and I have never felt so alone before. We are going to have to start all over again and we don't have the money or resources to start visiting new Oncologists that are hours and hours away again and again. Understandably, incredibly frustrated. My apologies if I don't sound like a game show host, but that's just not reality, and I am amongst friends, and should not need to do anything but keep it real with you as I have from the beginning.

The good news is that John just got a promotion, and will be making a little more money and have a much shorter commute saving on gas. The bad news is that I worry about the time he will need to take off to find a new Oncologist and a new hospital with me. He says that he has had long talks with them about my situation before accepting the promotion in management, but I don't want my situation to hurt his new job. Most people feel these things, but would never share them with anyone. That's not me. I share the reality of what is going on, and how I am truly feeling with you (always have and always will).

Since John and I are basically alone now in this, we have decided to get me back to the juicing and some of the things that I was doing before to try and bring me back to life again. They tell you not eat raw food when you are doing chemo, but I feel like I am the walking dead these days and the swelling from the Gleevec has slowed me down considerably. The only way I feel I can take some of my life back, is to start juicing raw foods again, and so John bought out the store today after work, on organic fruits and veggies with many that are geared towards reducing fluid retention. We will just have to be extra careful to triple wash and peel what can be peeled before juicing (less chance of getting bacterial infections, which most chemo patients are afraid of when talking about raw foods). I will just be careful not to eat salads anywhere but home, where I can control the quality and make sure everything is washed thoroughly. Back to raw foods, juicing, taking some of those powerful supplements, and cutting back on the Gleevec a little bit to see if I strike a better balance. I'm not giving up even if we have had our hearts broken by others giving up on my case. I could just cry every night, grow weaker, lose the will to live, and let myself die, but that's not me. I'm not a quitter. I am going to do all that I can to strengthen myself again through nutrition, supplements, and the Gleevec (just have to cut back to every other day or every two days). If you saw the swelling, you would understand. It's a must. Hoping it's enough to keep the cancer at bay, and not tear me up any further in the process.

I'm a warrior. I am not letting this monster take over my body and kill me. We are going to fight it with the tools that I have used before, but just not as many, as we do not want them to cancel out or interact with Gleevec so there are some that cannot be used again when taking Gleevec. Back to a plant based diet. Wish me luck. I love you now and forever. I hope you know that. Have a wonderful weekend my beloved friends....XOXOXO!

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Replies:

[> Re: Raven Update 8/2/13 -- Starlett, 03:27:40 08/05/13 Mon [1]

I just wanted to wish you SO MUCH LUCK!!!! Keep on fighting and I will continue to pray for you.


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[> Re: Raven Update 8/2/13 -- wherly, 16:19:11 08/06/13 Tue [1]

You're both in my prayers. God be with you always.


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[> Re: Raven Update 8/2/13 -- Rapido, 21:25:12 08/06/13 Tue [1]

Raven, I think of you often and my heart aches for you. I will tell you I am a medical professional non physician. I have been personally and professionally involved with life threatening illness. Communication is such a big issue and I know what iti is like to wait for return phone calls that never come. There may be logistical problems, organizational problems or the oncologist is reluctant to step on the toes of other doctors. I do not know if he is a community physician, an academic physician, a research based physician. Different practice patterns sometimes impact communication. My father had a tremendous cardiologist who only rendered inpatient care. He had no clinic hours so everything fell through the cracks upon hospital discharge.
Of course it is none of my business but if you have a primary care physician currently involved and up to speed, ask for help with this communication and care drop. Or ask whoever is managing your labs and meds for a care conference.
I am so sorry for your pain. Thinking of you.


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[> Re: Raven Update 8/2/13 -- JanLovesAMC, 08:58:37 08/09/13 Fri [1]

Just checking in to say Hi Raven! I continue to keep you in my prayers...you are indeed a warrior & a blessing to us.

...Keep the Faith!

Love ya!


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