Treading Water

What's the status of chemo? What am I waiting for? Are the test results back yet? How am I feeling? What's happening?

I wish I could tell you.

It was a very quick diagnosis process and I sped headlong into mastectomy which I don't regret, and into beginning the first phase of reconstruction - a step that I seem to rethink more and more. And then there's the question: What's next?

So shocked when I saw the 10 year prognosis from the oncologist that I said YES to chemotherapy within minutes, I was lucky enough to need further testing and clearance from other specialists and that slowed the process down.  Considering my general health and preexisting conditions maybe it needs to come to a dead stop for longer than an hour or a day and the options versus the issues involved thought through in a less emotional manner.

So I've called my own time out.

I'm in a holding pattern. Treading water. Thinking. Waiting.

Maybe I'm looking for a sign or a bit of insight or something I will recognize when I see it. While I'm waiting I made a video to talk about it.

Comments

[Otenth Paderborn]

More power to you for asking these questions. Life *is* precious, and modern medicine *can* work miracles. And there *are* some elements of quality of life that can't coexist with a blind pursuit of life and modern miracles. I have no wisdom to offer, but only honor to you for your courage and honesty.

Blessings.

[margalit]

This video was incredibly painful for me to watch. Being in a similar situation with a chronic and very serious heart disease, I live a similar life to you. I too spend much of my life in bed. I can't shop or do all that stuff that regular folks do because my heart won't allow it. My support system has, one by one, moved away or moved on. It's HARD to be friendly with someone who is essentially housebound, especially in the winter. I've fought a wheelchair for a long time, but at this point, I pretty much have no choice.

People don't get what a chronic disease does to your ability to look optimistically at the world. I just don't have that 'life is beautiful' thing going. Don't get me wrong, life is SO worth living, and my kids are still young enough to absolutely need me every single day, which is the reason that I fight this damn disease even though I absolutely hate it. It would be so much easier to give up, but I can't yet.

If I were in your situation, it might be different. I understand why you're thinking on it. I read the odds, and they weren't great. Chemo is a terrible process. I've watched my BFF go through it 2 years ago, and I wouldn't consider it myself because it affected her heart negatively. When my mother had her radical mastectomy, they didn't have chemo as an option, so she did the mastectomy and fortunately for her, lived on. But even with that choice she was tired and ached and didn't ever feel 100% again.

Our bodies can only withstand so much. Watching mine break down over the last few years has been a very difficult process. we all believe we're going to live forever. It's just not in the cards for any of us. Our bodies decay and get sick. Aging is hard. It all sucks. But in the end, it's YOUR decision what you want to do, and our job to respect and honor your decision.

[s13cybergal]

Susan:

I know the illness thing from both sides. For years I labored with such severe depression that I had to take entire weeks "off" while trying to go to college. I took a light load and am a quick study. It was a drag trying to explain to people why I had to "go to bed" so much.

Now, I clean house for a very nice lady with exposed nerves in her feet. She is in hellish pain most of the time, in spite of being on very strong narcotics. It is harder to watch her hurt, than it is to hurt in my own body.

Be sure to give your family a chance to tell you how they feel about what they are doing for you. Yes, in a way it may be a drag, but they also love you. I am so glad you are leaving the options for yourself open.

One of the things I'm just discovering with my church community is how people genuinely like to give of themselves and share. If your husband was the one in bed all day, would you only see caring for him as a burden?

When the time is right, I know you'll cross these different bridges. I appreciate your balanced approach. Its hard, but do-able.

I salute you friend.

Jane

[francine hardaway]

Susan, do what makes you happy and contributes to your quality of life. I had no idea of all these other factors. Chemo is difficult. You have

[Kathy Jacobs]

Susan,
I appreciate what you have said in this video. You helped me understand not only your decision, but also a lot of why you and I connect. When one is housebound, it is hard for people to understand that you can't do what others do. When you do take the chance and do what a "normal" person does naturally, you pay for it. Your descriptions of this life helped me remember that I am not alone. I wanted to let you know that you are not alone in this decision either. You may not have as big of a local support system, but you have strength and prayers coming at you from all over the world all the time. Depend on us. Lean on us. Let us help.

Kathy

[skylar mccready]

Hi Susan,
I have lived with FMS for 7 years now and I can truly sympathize with the pain that you experience. I have over 27 points of pressure that nearly riddle my body at different times throughout the day. It's not anything that you can take a "pill" for either, it's more like just coping with the agony and living with the pain. I have severe insomnia, paralying panic attacks and mind fogging like you wouldn't believe! It's been hard to get a diagnosis because there is no real test that can be performed because FMS is a bundle of symptoms and not a clinical "disease", matter of fact, I diagnosed myself and MADE my doctor realize what was wrong with me. I at first thought I had Epstein Barr, but the chronic bronchitis that I live with 9mos out of the year and the pressure point pain, confirmed FMS. I think the worse part, alongside the pain, is the sheer exhaustion!(I have thalassemia minor also which doesn't help the exhaustion) It's unreal! My children (5 of them) all have been educated about my needs, FMS, and the fact that mom isn't 100%. They have been wonderful God sends! The best thing that I have found, outside of any 'pill bottle from a doctor' has been taking milk thistle (keeps your kidneys and liver detoxed) and a combination of calcium/zinc/magnesium. I also take excedrin Migraine because I get excruciating migraines and this is the only thing that helps. I have nearly tripled my intake of protein because you have to replace the muscle/tendon sloughing that FMS is causing (that's where the pain stems from) I eat ALOT and I mean Alot of chicken! I try to stay warm and take frequent hot baths so that my muscles don't have to work hard to warm up. As you know, those muscle contractions hurt deep and disappear just as fast as they arise. They seem to move from one place to another. I have my son take his elbow quite frequently and just grind into my back under my scapula, the spasm feels "grainy" and you can almost feel it relax as he massages it. I call it my "feel good hurt". But he has to stop the minute the spasm stops or it irritates it into more pain, and that's not good.
I hope you try some of my suggestions and I hope that they help you as you struggle with this infliction. You have a lot on your plate and this definitely is something that takes strength to deal with. I am trying to get disability because I am a nurse and Lord knows there's nothing worse than taking care of someone when you don't feel good yourself. There are so many times when it's all I can do to get out of bed and when I do, it takes me nearly 2 hours or more to get everything going.
I'll be praying for you,
skyM
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