Yesterday, was the long awaited to my Cardiologist day. Frankly, I am scared, in pain, dosed up on steroids, and not feeling that confident with everyone shooting in the dark at what's going on with me. My cardio said yesterday, "Well, this is where art and science come together." Oh, great! Basically, he doesn't know what is going on with me, and he is not in favor of me being on the Cohlchine for a year. He instead is saying that he doesn't know what is going to do the "trick" of getting the inflammation away from my lungs and heart. He also doesn't know if its my heart at all, but since I am in pain when I breath in it is probably both. But no way to know for sure.
So, He has me on predisone 20 MG a day, 1 small dose of Cohichine, 1200 MG of IBprofren, and to protect my stomach prilosec. I am to do this for 28 days, one month. Then, after that if I am not in pain anymore, he'll start to taper my steroid.
I am feeling scared, I am feeling bummed out that no one seems to know how to treat this. And really, even if there was a cardiologist that specialized in cancer, and its side effects, there is no one method of treating what is happening. If there was, everyone wouldn't be saying different things.
I put a call into my Onc today, and want to share with him my feelings. Since he is the cancer specialist, I want to hear what he thinks. Should I seek out another Cardiologist, or just stick with this plan and see what happens. I am really really tired today. Monday night, or Tuesday morning more like it, I woke up at 2:30 and couldn't get back to sleep. I didn't want to take a sleeping pill. So, last night, I had to because I was wide awake, and had been up for 20 hours. Now, today, I am exhausted and not "manickie" at all. I just drank a cup of coffee to wake me up a bit. I want to go mow the lawn. There is only so much laying around I can do today.
I saw my Oncology therapist this morning. She sure is a helpful piece of the puzzle. She admitted to me that last time I saw her, she was very worried about me, so she called my Onc and talked to him. I think I am better. Last time I saw her I was on more steroids than I am now. I really don't want to go on a "downer" pill to counteract the steroids. Its just too much "medicine". I am just trying to be gentle with myself. Things that normally would get me annoyed really piss me off and I just have to stop myself and try to not make things bigger than they are. Which is incredibly difficult. I find myself telling people, that I am sorry if I am intense right now, just because i am on steroids.
At least I am not hearing voices.....which steroids have been known to do to me in the past. If only the doc's knew how all these medicines they give you would, how they will effect you ahead of time, so that you are warned. But every body chemistry is different. And honestly, my chemistry has changed from last time I was on these steroids, and I am having different side effects anyways.
UG!!! Well, good news. I only have 6 more rads left. My skin is totally awesome and I am not in any pain at all. I am very thankful for that. Well...I'm off. I am going to go mow and edge the lawn. Does anyone want me to come clean your house at 2 AM??? I'm taking orders.
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Hi Heather!
So my little researcher has some stuff to show you!
Looks like MD Anderson has a whole TEAM dedicated to heart-related complications of cancer treatment! Here are the most pertinent links:
http://www.mdanderson.org/departments/cardiology/ and then another section on education/support related to cardiac complications http://www.mdanderson.org/departments/cardiology/dindex.cfm?pn=274b5e36-c0a5-49ca-8637d523965a8574
I don't care what any of your docs say...I think you should call MDA. They have an incredible reputation and they are the ones that come up when I try to find expertise in the particular issues you are dealing with.
Hope this is helpful!
xoxoxoxoxxo
T
Thanks so much! I just tried calling them. I think its worth a trip to Houston! This is my heart for god's sakes!!
I spoke with my Onc and he said that he thinks I do not need to go anywhere outside of Seattle. We have great Cardio's here. He said he thinks its a really good idea that I am on lots of anti-infammatories for a month and we'll go from there. I trust him inherently, he is a rock star in his field, and I'm going to listen to him. Thanks for your help Tamara...
I think you have great care here too, Heather. But these folks at MDA are absolute rockstars and they have specialized experience (to me, that's the clincher...I mean, even a special area on the site dedicated to heart and lung complications related to chemo...). I just can't see a good reason not to go there and get an opinion from them. But that's my opinion and now that I've beaten it to death, I'll drop it. I do hope you'll at least call and see what they have to say, because I really can't see the harm in it -- there's only upside.
The good reason right now, is that my Onc said he doesn't see the reason. Part of finding the best Onc in the beginning, was for this exact reason. I got one of the best because of his years of experience, and I think he is as good as the folks at MD Anderson...
Thanks, for the research. If I need to go that route, I will..I think its too early for that right now.
Hi Heather,
My name is Julia and I am in your club :-) This will probably end up a blog within your blog. I came across your blog while googling blocked tear ducts, because I wanted to know if chemo causes it (it started when I was on Docetaxel). Chemo finished for me August last year and I still have problems with one of my eyes.
Anyway. Your journal here brought back so many memories for me, and it is rare to find people who DO REALLY understand EXACTLY what you are going through, not only physically but emotionally.
My story. I was diagnosed March 08. I am 44, which might sound old to you but I am still classed as a "young woman with breast cancer" by the medical people. I found the lump myself and yes, I keep getting those "how did you find it" questions. After all the mammograms, ultrasounds, ct scans, full body scans etc, I had a lumpectomy and axillary node removal (not sentinal node which is less invasive apparently) in April. What they found was a 3.5cm tumour, which had started to spread into nearby ductal cells, and they removed 9 nodes, one had cancer in it. The surgeon got clear margins, but just like you, only mm's at the back. So I had to have a second surgery which they took down to the muscle membrane. I am negative for Her2, and only weakly positive for hormone receptors. They have put me on tamoxifen for 5 So ... I have/had stage 2b, grade 3 tumour. Nasty and aggressive.
4 1/2 months of chemo followed: F/E/C, then Docetaxal. Then 6 weeks of radiotherapy. Because I live in the country, I had to travel to a hospital 2 hours away and stay on campus during the week. I found radiotherapy not bad at all. A red and slightly uncomfortable breast, but I was still suffering fatigue from chemo (and still am) so that wasn't a huge issue.
They never told me what my particular recurrence rate would be. Maybe that's a very good thing. My survival stats are 65% chance of surviving 5 years. What pisses me off is people saying "oh, they're good odds!" EXCUSE me? I have a one in three chance of being dead in 3 years! I don't feel like that's really good, thank you. Survival and recurrence rates of course are hugely different. Recurrence rates are naturally going to be much higher than survival rates, because of course recurrence does not mean you are going to die from it. I have a friend who has been dealing with breast cancer for 11 years ... it keeps coming back every 2 years. And she keeps going into remission.
It sounds like you are going through absolute hell because of heart problems caused by chemo. That really sucks. I'm sorry. I can honestly say, that I hated the steroid (decadron/dexamethasone) more than the chemo itself a lot of the time. Hated it. But ... at least for the first 3 days after a chemo dose, I got a lot done haha!
I finished treatment (discounting tamoxifen) in late October last year. I am still recovering and I think it will take a LONG time for me. I was enrolled in uni again this year (started last year but had to give up virtually straight away), but even with only one subject, I study for one hour and have to sleep for 4/5 hours afterwards, so have to put it on hold again. The exhaustion is incredible. And I get tired of people saying "oh yes, I've been tired lately too". Argh, they have no freaking idea.
I think of this cancer journey being more a psychological hell than a physical hell. At least, it has been for me. When I was diagnosed, people commented on how strong and positive I was, and I was. I believed (and still do), that this is a huge opportunity for spiritual growth, and I HAVE learned some very important lessons, but I haven't done all of the things I had planned to do to deal with this.
I'm having therapy, and it's been a godsend. I am a single mother of a 6yo boy, living alone. I had only just separated from his father 5 months before I was diagnosed. It is him who has kept me alive this past year, my son, because I HAVE to live, for him, I can't leave him without his mummy.
I was devastated when I learned I probably wouldn't be having children again. I might be 44, but i'm single, and I would have loved to have a child with the right person, had he come alone (now, because of my age, and cancer history, and physical 'changes', I can't even see a relationship in the future). Chemo whacked me into menopause. Tamoxifen doesn't help. I'm starting to believe I'm not getting my periods back at all, and the hot flushes have developed to where I now feel like I have ants under my skin biting me torturously if I even start to get a little warm.
Yes, I started out positive, but it's been murder psychologically. What is worse is that everyone who hasn't been through this thinks "oh, you must be so HAPPY treatment is finished and you can get on with your life." The fact is, the survivor stage can be the hardest stage.
My hair has grown back in dark and curly, whereas it wasn't before. I, like you, had beautiful long hair. I, like you, cut it off shoulder/chin length before surgery, and then shaved it when my scalp started to hurt like a bitch. I put on weight through chemo which REALLY pissed me off (I thought a good benefit from chemo would be weight loss). I had lost 20 kilos and was fitter than I'd ever been, right when I found the tumour.
So much of your emotional journey here I can relate to. I hated being told "you'll be okay. Think positive". I would see red then. Fact is, studies say it makes no impact on your survival whether you think positive or not. Another pet hate was going to, say, the supermarket for groceries, getting to the checkout and having the polite "and how are you today?" question. *rolleyes*. All I WANTED to say was "what a stupid insensitive question. Here I am, wearing a scarf. I have no eyebrows or eyelashes, am obviously having chemo, and you're asking a flippant how are you today?" What I wanted to say was "actually, I feel like ***king shit".
The loneliness ... no-one can understand the abject loneliness, even when you are surrounded by loving family. Or how the fear of impending death is NEVER going to leave. I was due last week for my first mammogram and ultrasound since I was diagnosed last year. My first post-treatment lot. I was sick with anxiety. Not so much at finding out the results, but at reliving the whole thing, from a year ago. The anniversary time can be a hard time. The date of diagnosis, the date of surgery ... all of that. Problem is, because of chemobrain, I turned up a day late for my appointment and now have to wait until the 27th.
Chemobrain... oh. my. God. Normally, I'm a very intelligent, sharp as whip person. Now, I feel like an absolute idiot. I can't STAND being this forgetful and stupid.
I could bang on all night here about various of your journal entries that really touched me (but can't remember already so you are safe!) Suffice to say, I'm in your club, and I do now how you feel (but at least I already have my one precious child).
I love to write to, and what has been strange is that through my journey I haven't written a terrible amount about it. But what I did is at www.greeneyedguitargirl.com. Feel free to pop by. I am definitely subscribing to your blog.
Much peace and good thoughts to you,
Julia
Hi Julia. Thanks for all that you said and for sharing. It warms my heart that you found my blog and its touched you.
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