Well, the PET scan shows no evidence of disease while the CT scan showed remarkable shrinkage on the masses. Woo Hoo! Prayers are answered. Now the curve ball.......doc suggested two additional treatments for "insurance" purposes. That wasn't taken so well, especially since I have two left on the original plan. Now possibly two more on top of that for
"just in case?!" I'm struggling with this. A lot of people will say the doc knows best and I don't necessarily disagree. However, when I asked for the pros/cons of the two add'l treatments, I didn't get an answer. Might be the language barrier due to my doc being Vietnamese, so I reworded the question. If the tests show now evidence of cancer and I have two treatments left, wouldn't that be enough? Do we really need to push the envelope by putting poison in my body two more times? I also got an answer of well we can stop as originally planned and go on to radiation. Also got the statement if I do two add'l treatments, the percentages are better. What I didn't get was the actual percentage number. I know you all are feeling my frustration with this so please bear with me while I try to rationalize this situation. Last night I went back and read every posting and comment thus far. What an emotional ride. In an effort to get back on track in dealing with the balance of treatments, I'm trying to focus on one day at a time. I sat in the church yesterday and asked God to heal me. This is a repeated prayer. I promised to follow the path he chooses based on the test results. The test results are clean. No evidence of disease. So what now? Especially when the doc presents it as an option. I'm not afraid to deal with the side effects but I am afraid of pushing the envelope by putting these drugs in my system more than what possibly be needed. My lungs have already suffered but can repair themselves. My heart, liver, kidneys are okay right now but are at a risk and can't repair themselves if something happens. Regardless if I do the extra treatments or not, there's no guarantee this won't come back. Am I making any sense? I go back tomorrow for my shot (wbc's). I'm hoping I can get some time with the doc to discuss this some more. If not then I'll ask for a consult with her prior to the next treatment. All I need is for her to stand her ground when making a decision. Just explain why. Are there other options? On the flip side of all of this, I am extremely grateful for the test results. Every one's support, care, concern, and prayers have been absolutely wonderful. I'm trying not to let the possibility of two more treatments over shadow my blessings. This is a tough decision for me. I will admit, this time, it really is all about me. I won't make a final decision until I know I can be a peace with it. As of now, my gut, my heart, and my head are saying no. I've prayed for strength and guidance since day one. I really need it now.
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Good Morning,
Annie, I am so with you on the decision about the two extra treatments. It is so hard to know wht is best for you. What I think you should do at this point is give it to God and ask him for the answer as to what you should do then see what makes you feel the most peaceful. If getting the extra TX makes you feel at peace then you'll know what is your answer but on the other hand if thinking you won't get them makes you feel more peaceful there you go. I think if you fully trust in God's plan for you he will give you the answer you need. I am praying hard for you as I always have and the test results you just got are a sign it will all be ok. But this decision you have to make isn't made any easier by that. But then who said this adventure was going to be easy, right? I wish I had a magic button to push that would make it all go away. You know like the easy button? Wouldn't that be nice? In the meantime don't think about it 24/7 but lift it to the Lord then let it go for a little while. Wait for the anser from God, don't try to make it come to you right away.Sometimes when we want something so much we try too hard to get the answers in our heads and that gets in the way. You know you have so many of us praying here with you day and night so it'll come, just try to be as patient as you can. I pray God will send your peace about the right decision as soon as possible! Hang in there girl, we're close to the tunnel opening.Please let me know if you need me in any way!
Hi Annie.....My favorite saying and one I believe in is "Trust Your Gut". That being said, I know that sometimes the mind plays games with you when the gut is telling you something your heart doesn't want to hear. My first thought was take the treatments, but this is a decision you must make and come to terms with. I think the most I can do now is pray that you will make the right choice. I know that God controls your gut, along with your heart and soul, so whatever the decision, I'm sure it will be the right one.
Annie,
Corneice hit the nail on the head. I agree with what she said and I even think that your gut feeling is from God. I think he's the one who put that instinct in us to know what to do. You will feel that peace when you know whawt to do and following your gut feeling does that. I know every time I've had that gut feeling and not went with it, it was the wrong choice and I regretted it so take Corneice's advice it's the best. Hope you're having a good day!
Hey there girly, I'm sure you'll remember I'm not much on letting go and etc. I say no way. With this much improvement why risk any more poison? Trust your body and be your own medical advocate, you know what your body needs. Love you girl.
Hi Annie,
Speaking as someone who was diagnosed HIV+ in May-97, I can relate to much of what’s in your blog. In the early days (mid 80’s) of HIV, treatment options were limited and hazardous at best. Those treatment options have improved, and continue to do so, but they’re still a guessing game! Not that long ago, PLWHA’s (People Living with HIV/AIDS) were dying as a direct result of those treatments. I, too, went through the internal debate of “Do I take my chances and take the drugs, or do I take my chances and NOT take the drugs?” My coin toss decision landed on “Take the drugs.” I figured I had more to loose if I didn’t.
That being said, I’d like to share with you some of the stuff I’ve learned over the past 11-years…
First – Doctors are Humans, not Gods. As such, there are different levels of experience and expertise among them. They’re not perfect, but in general, they’re doing the best that they can under the circumstances. If you haven’t done so, you may wish to read the Cover Story from the July-08 issue of Reader’s Digest; “41 Secrets Your Doctor Would Never Share.” Many insights to be had there.
Second – My best information resource has been other PLWHA’s, whether newly diagnosed or living with it for the past 20+ years. If you haven’t already sought out others with Hodgkin's Lymphoma, I highly encourage you to do so. After my status disclosure (see either the front page of the Leaf-Chronicle dated 11-Dec-2003, or the second page in the Living Section of the Tennessean dated 12-Dec-2003), I had all sorts of people coming out of the woodwork offering up advice and suggestions. Don’t get me wrong. Full disclosure was very liberating!
Third – GET INVOLVED! You don’t have to be a victim; be a resource/advocate! Even as someone who is newly diagnosed you have lots to offer someone else with Hodgkin's Lymphoma. Again, I’m speaking from personal experience. As you may or may not know, I now work part-time for Nashville CARES as an HIV Prevention Educator. My target populations are the Incarcerated and those in treatment centers for Substance Abuse. I’m a volunteer with the Ryan White Community AIDS Partnership (RWCAP) of Middle Tennessee, as well as being one of the two official delegates from Mid. TN to the Tennessee Association of People With AIDS (TAPWA). This type of advocacy is a two-way street. Not only do I get to help others (no matter what their HIV status +/-/?), but in doing so, I help myself.
I know you’re a Power-player, that’s what I’ve always admired about you.
Now’s not the time to wimp out -- now’s the time to kick it up yet another notch!
Some say that God never gives us more than we can handle. I disagree.
I think God DOES give us more than we can handle, if only to keep us from believing that we can do everything all by ourselves! We all need help, and we can/should be of help to others. I believe that’s His plan for each of us…
My prayers are with you,
Claude
Hi Annie,
Not ever being in your position that you are in right now, I cannot give you advice and would never try to. This decision you and you alone must make and I know you will make the right one for only you and your body. God be with you. Annie, try and remember that God is not beside you during this time, he is holding you in his arm as he carries you through this journey you have had to endure all these weeks. He has never left you by yourself and he will be with you until the end, FOREVER. Please try and find that glowing spirt that I know Annie started with, you are so close to good health and the end of your treaments. You are never far from my thoughts and prays everyday. :)
Annie,
after reading about everything thats been going on with your health,I know that you have all the Faith and The Trustin God's work. Remember God is My Strength and My Portions Forever!!
You're in my Prayers
-P.S.
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