Sunday – Past Saturday's Blues

5 Jul

Yesterday was rough. I barely left my house. Not good. If it weren’t for my dog I guess I would not have gone outside at all. 🙂 But, today I will change all of that. No more moping around. I woke up yesterday at 5:00 am – which is pretty normal for me these days.  I decided (big mistake) to do some research on lymphedema. I had a meeting with my surgeon this past Thursday. She was very rushed and basically dumped a bunch of information and left. I had come in with questions about my upcoming surgery but was not able ask her any of my questions.  And, then the new information generated new questions. But, there was no time. She was hours behind schedule when I arrived for my appointment.  And, she had surgery scheduled for that afternoon. She looked stressed. I definitely do not want to be the patient that she operates on after a hurried, stressful day of seeing patients. No thanks.

Anyway, one of the little bombshells she dropped was that I would need to wear a compression sleeve for a couple of months to help prevent lymphedema. This is the first I had ever heard of this. And there were just so many other things that were relayed, my head was spinning.

So, it just was not a good meeting and it left me with more uncertainty than ever.

It is really odd how they impart information.  Everything that she told me on Thursday could have been relayed months ago.  And, had I received this information months ago, I would have had more time to research my options. Yet, I am only getting this information now, just a month or so before my surgery. I can’t go forward with surgery until I have my questions resolved. And now, there are so many.  So it is a mad rush to get a second opinion and to possibly even have the surgery somewhere else.  I was just very dissappointed in our meeting and it really left me feeling as though I was just one of the cattle being run through the line.

I really do not get why I did not have this information months ago. Now I feel so pressured for time. I think I am a difficult patient. They see me walk in with my notebook full of questions and well, they don’t really want to deal with that I guess. But, this is my body,  and I am stuck with it whether it is trying to kill me or not. And, I need to know what they are going to do to me and what the longterm implications are of everything. So, yeah, I am a pain in the ass.

So, I was told that because of the surgery and the radiation treatment that I will be at a high risk of lymphedema. Lymphedema is a chronic swelling that can occur in your arms after having lymph nodes removed. It results from your lymphatic system being unable to drain fluids properly. As a result, fluids can build up and swelling results.  Also, you can get infections, your skin can become hard permanently and well, it is just not a good thing. And, there is no cure for it once you develop it. So the key is to not get it.

The risk of this condition is further increased if you have radiation. It is (second to the fear of having a recurrence of cancer) the biggest fear that I have.  I would not be able to play the bass if I were to get this condition. And, now I am told that playing the bass could actually increase the likelihood of getting this condition. So I found myself asking my doctor if I would be able to play the bass again and she would not directlly answer that . . . which I guess is my answer. She would only say that I would not want to do anything to increase my risk of getting lymphedema.

So that is the news that I have been mourning. It feels like a death to me. I know it is not, but it feels that way somehow. I can’t get my head around that one. And, now for the first time, I am just really angry about having cancer. Angry that I didn’t discover it sooner.

I just am not willing to give up on playing and I am not willing to accept my doctor’s statistics on my likelihood of developing lymphedema. I am not her average patient. Most of her breast cancer patients are overweight. She told me when we first met that most patients gain 20 pounds during their treatment. She said that one of the drugs in chemo causes you to crave carbs. I don’t quite understand that. But, I did not gain weight during the chemo., not yet anyway. I know that lymphedema appears to be more likely to occur in patients who are overweight. So, keeping my weight down will probably be help. I am not overweight. But, I am going to drop some weight all the same before surgery. I have been too laxed in getting exercise. This last chemo was so much more difficult. Between that and the heat outside, i just didn’t get much exercise in.  But, no excuses now.

Well, a trip to UCLA is in order. And, I am really thinking that I may want to switch to UCLA for treatment. I don’t even know if that is possible at this point. But, I am going to see what I can find out on Monday. I at least need to get  back up there to be seen by the specialist that I consulted with in April. She was amazing. I wish she could be my doctor. We’ll see.

Whatever happens, I just have to get my questions answered and I need to feel confident in my doctors. Which at this point I am not.

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