Round and Round
I’m trying to think of clever opening for this latest post, nothing much is coming to mind. It’s been awhile since my last entry, life happening ya know and I guess that is a good thing. Some people, well one person I know says that writing is bad for me because it causes me to fixate on my health issues. I disagree with this mindset, writing helps me get in touch with what I am feeling. How does this help my conditions? I don’t know, but it makes me feel good. I’ve been trying to keep busy these past few weeks. I have started a non profit support group for RSD, today we had our second group meeting – 5 people showed up, great folks all with RSD. I was as upbeat as I could be at the meeting, I’m great at wearing a happy face no matter how flippin stressed out I am. I got a distressing phone call this past Thursday.
Paging Dr. Bobby Wu.
Is it legal for me to print his name in my blog? Hmmm? I have no plans on saying anything nasty. Dr Wu was my surgeon for the lumpectomy, which also took a large chunk of my left booby – so it was almost like a partial mastectomy. I like Dr Wu for the most part. Anyways, his office called me Thursday. There are concerns form Bobby Wu about my choice not to have radiation therapy. The good doctor is now advising that I get a double mastecomy. Yeah – I thought I was moving forward as well. The good doctor is concerned about the chances of the cancer coming back being more greater.
Radiation therapy is known to cause RSD – Reflex Sympathetic Dystrophy. I already have RSD in my lower limbs, hips, small of back and left arm. I should risk this crap going to my chest? I do not think so. The chemotherapy caused my RSD to progress from just lower limbs to upper limbs, I still have trouble walking yet this doctor wants me to risk RSD in my chest, I’m thinking RSD in my chest would further incapiciate me. But cancer could kill me. I do not know what to think. My mindset was to get check ups to watch for any cancer and if I got it back to then opt to have both tits hacked off, but I run the risk of cancer spread too. I’m so confused.
I spent most of Thursday evening crying. I’m emotional. Despite Chemo knocking me into menapause, I still get emotioanl during the time my cycle should be hitting and wouldnt ya just figure, it’s that time. I sobbed the rest of the day like a child being deneid candy in the check out lane. Yes, at times a full blown all out throw myself on the bed it’s the end of the world moments. My husband waited until my wimpers calmed before sitting me down to knock some rationale back into my melon. This is hard on him as well.
Do I really want to consider having both my boobs hacked off? No. I’ve had a troubled time accepting my physcial appearance since my left one was partially knobbed off. I’ll be eblunt again, I was a bra size 38DD, well maybe a 40 depends on the bra style. The lumpectomy took my nipple area and left about a 6 inch scar accross my tit. Oh plus more tissue was taken then expected because another small lump was found. I ended up having two types of cancer – lucky me. I’m well endowed but now my left tit looks like a partial loaf of bread, it’s square. Very hard to notice when I’m wearing a bra. My summer of letting em fly solo was missed though. Anywhos – my physical appearance does not make me happy. It’s so easy for anyone to say “well at least you still have you’re boobies” ya – now what would they say in response to suggestions to have them both removed? “You’re boobs or you’re life?” Yes. My sister already whispered that to me. Of course I called her during my seperation of my mental wellness state. I always call her first, she’s brutally blunt and that is what I need.
So what am I on about? This might sound very odd to anyone reading, anyone who does not have RSD. I’d rather risk the cancer coming back then deal with the RSD spreading. The pain is horrible, I can’t imagine it in my chest. If I get the double hooter hack, the RSD will most certianly spread. It spread to my left arm after the first procedure. This may not make sense to a person who does not deal with chronic pain. I must sound crazy – I’d rather risk the cancer coming back then endure radiation and or booby removal.
MY RSd after the Chemo spread to my upper limbs, hips and small of back. I’m in horrific pain most of the time now. I am able to move around for barely 2 hours in the morning and I have to go lay back down due to pain, generally by noon now I am taking a pain pill. My walking is still unsteady, it varies day to day. One thing has not changed, the length of time I can be standing, 15 mins and my legs wobble. Do I really want this to spread to my chest? Hell no. I’m incapacitated enough.
It took me two days to sit long enough just to thump this out. Am I crazy for leaning towards risking the cancer coming back? I am meeting with Bobby Wu Thursday to discuss. I’m kinda scared – I do not think he grasps RSD; Luckily though I have a appointment earlier Thursday with my new doctor that has been tending to pain management with RSD. I plan on discussing this with her as well.
It’s 3:05 am. I wish I could sleep.
I feel for you as no one except an RSD patients understands what RSD feels like.
I cry when I read your post because I am in such a similair situation.
I have had the lumpdectomy and got the same kind of call. I then had the masectomy. I only did the left breast. Talking about a freaky looking person.
I am now faced with the chemo and radiation. Did not know that chemo and radiation can cause the RSD to spread.
I felt even more angry when I found out chemo can only help in about 4.5% of breast cancer patients. Seems like terrible odds if your trying to beat cancer and certainly why even have the risk of a further RSD spread.
Do you know of anything I can read about the chemo and radiation spreading RSD???? Hard enough finding an RSD patient to talk to let alone one that also has breast cancer.
Thanks for your help.
Kathy
Hi Kathy,
Most RSD sites will state the radiation causes RSD, I can only imagine that radiation would attribute to the spread. There is no information about any cancer related treatments for people with RSD. I contacted Jim B from RSDA.org for any information and all he had was a case study on cancer treatments causing RSD. SO it is uncharted waters for the person with RSD having any cancer treatment. Even my doctors thus far have been absent as to any responses of what to expect. And that is what really yanks my chain…how many of us are out there dealing with this and no answers? Several have found this blog but I am not a medical source.
Perhaps tell your oncologist about my experiences with Taxotere (chemo drug), Maybe off list I can give my oncologists name and they can compare notes? Though my oncologist seemed to completely disregard my RSD. I want to help other women w/ RSD having to endure this treatment. I’ll up date on my consult with my surgeon.
Darn! I hate to state the obvious but it seems like you are between a rock and a hard place. Bilateral mast versus chest RSD. I am so sorry you are going thru this.
I wanted to point out some things I thought while reading this. If you have the surgery, you can work very closely with your pain management Dr. to immediately have thoracic outlet stellate blocks bilaterally. Stellate blocks given in a month of a surgery,injury etc prevent RSD and in an existing RSD patient it will block the RSD from spreading to that area. There is a chance that the RSD can still spread there, but the chances of that are so much less. That way you can hopefully prevent the cancer spread and the RSD spread.
My other thought is that I fully understand your position. When my arms, side and leg are burning I have begged God to please let me die early. That is hard to even write, but unless you have RSD you cannot understand what the burning pain, spasms, deep pain inside your bones, the twisting feeling like the bones in my arm are pulling out of socket. I understand that it would be easier in a way to not have to fight everyday. But your husband, friends, family, your new support group friends and people like me need your voice, care, compassion, friendship and understanding. The times that God reminds me His answer is NO. I think of the people that love me and I remember that even though the pain is constant but there are breaks where I can still give love to my friends and family. Even if it is only two hours, I bet your husband would not trade those two hours for the world. I don’t know if you have kids, if you do, I know they wouldn’t care if it was 2 minutes of being with you, they would rather have that than not have you.
In the meantime, you remain in my prayers. And remember when you feel between a rock and a hard place, just slide to either side! You are not stuck!
Big HUGS!! Jenn
Hi Jenn,
Thanks so much for the information about the blocks, I will bring that up to the doctors. I wonder if that would work for radiation? I’m hopeful that the meeting with the surgeon will go well – I’m not sure he fully grasps RSD, so typical with too many in the medical profession. I’m going to research the block and arm myself with the information to bring to Dr Wu.
And Yes, I can fully understand the wanting to die part. I think only those with chronic pain can fully relate. There are many times where I have been laying in bed with a flare up and wishing I would just expire. My flare up as of late seem almost constant. The only relief I get is laying on my bed with a heating pad, it gets old real quick. It is not living it is just merely exisiting, it is then my thoughts turn dark. It’s 4:30 am, I slept for two hours and now back up – a grand flare up for three days now. During our group meeting this topic was discussed, wanting to die. Some were not quick to admit to having the thought but through others talking all nodded that they’ve has the thought. I think it is okay to think about, dwell BUT not to make any plans on how to do it – it’s at that time that help should be called for.
I’ll update on any choices I make. For now I just wish I’d awake from the bad dream
I’ve been hailing myself as a cancer survivor – denial is a wonderful abyss until reality slaps ya. And that is what I have been dealing with.
Thanks again for the info – you are a gem! Odd I have to get this from a fellow RSD’r and not a doctor eh? *smile*