Monday, January 24, 2011

Had my fourth muga scan today

Had my fourth muga scan today - and quite astonished to read now that I was injected with a small amount of radioactive isotope before the scan. I dunno, maybe I am losing it. I know it takes place in the nuclear medicine section of the hospital, that it says "radioactive:everywhere as in the toilet there, plus this is the fourth one I have had and have done lots of reading up about it - but did I forget? Or was I too concerned with the score?
Part of what can be detected from a muga is the rate at which the heart emits.
Prior to my treatment for breast cancer, I was sent for a muga to get a base reading.Cannot remember exactly what I scored but it was in the 70s. After chemo (and radiation???), it went to 65 and after herceptin, to 60. Today it was 62 and the doctor there said all was looking good. No dilation - but not sure what that means....
This is why one has a muga before and after breast cancer treatment
I am not certain if the 2 point difference means anything but am glad that it is moving up again.
The radiologist who did my mammogram and scan last week said if the damage was caused by the chemo, it is irreversible; if caused by herceptin, it will revert back to normal. So he said I should go up to 65, which was my score pre-herceptin but it didn't.
I see the oncologist next week so he will clarify matters.
Anyway, was not unhappy.
Learnt something about myself, well, The Yoga Man pointed it out and it's true. After a stressful situation, I eat. So my compulsive eating is post stress. Must have been hassled re the muga cos afterwards, ate and ate. First some Jerusalem dates (roasted dates, yummy) and then a frozen yoghurt and then a piece torn off from the gruyere cheese I bought to make a marrow and tomato gratin for dinner.
Well, what I really wanted to say is that I got chatting to a woman while waiting for the scan. She was there cos her husband was having a PET scan. He has prostrate cancer which has spread to the bones. Has had cancer for 11 years and is now on phase 3 of a trial, based in the US but tested in Switzerland, and sees the same oncologist as me. Also thinks he is fabulous! Part of the trial is that he has to have regular PET scans -- every three months. And although he looked pretty well to me, she said he was in hospital last week.
Impressed that we South Africans are eligible for such trials and that my oncologist is part of that. I know there is a research unit at the oncology centre and must say, I do know someone who went on a trial here with the same oncologist and is now very well.
Makes me wonder if anyone in South Africa was on the same trial Daria Maluta was on. Very possible. She died on January 22 from liver problems caused by the treatment which ironically did shrink her tumours. Opened Facebook and up popped the birthdays - it would have been her birthday today. Not 100% sure but think she would have turned 50. Or 49. And Facebook can be so sickening. Many of her "friends" have wished her "happy birthday - and many more", not knowing that she has died.

Sunday, January 23, 2011

Daria ... one hell of a special lady

Daria Maluta has passed, writes her husband Don on her blog daria-livingwithcancer. She was one hell of a special lady who lived the last few years of her life with metastatic breast cancer. I never met her - she lived in Edmonton, Canada but I felt like I knew a part of her through her blog. Read it.

And read this blog  too, for just one example of what she meant to us out there.

And read this,  one of her earlier postings, which another blogger has posted in tribute to her.

The blogasphere is abuzz with tributes to Daria; she touched us all. I am reading them but too upset to say much more.

Saturday, January 22, 2011

metastatic breast cancer

Metastatic breast cancer is cancer that has spread to far off sites in the body. It's what Daria of daria-livingwithcancer has and now she is moving to a hospice - the medical trial drug she was on shrunk her tumours but affected her liver and now she is dying...
Julie of fitnessforsurvivors has written an interesting post and has directed readers to an article in the New York Times this week which deals with metastatic breast cancer.
I like this quote at the end, made by Dr Suzanne Hebert, an optomotrist in Connecticut:
"Dr. Hebert says that while the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer.
“People like the pretty story with the happy ending,” she said. “We don’t have the happy ending.
“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”
Ja, I don't do the pink ribbon thing. Would feel most uncomfortable wearing on although I would not hesitate to wear a red ribbon for HIV/Aids. 
Do read Daria's blog if you want to inspiration on how to tackle adversities. She is too wonderful and I am going to miss her and her blog postings. Read the comments on the latest ones, in the last week or so, and you will see how she has touched so many people. Then read some of her earlier postings (I did, the other night) and you will see how her writing reveals an energy that she has not had for a long time, but the determination and resilience and practical approach has never left her. She is moving to a hospice within days...
And read Julie's most recent posting on pink ribbons and Daria and read the New York Times article on metastatic breast cancer.

Was asked to add this link: (9 September 2014)... (Also need to note that Daria died) 
I wanted to let you know about this great resource Healthline has about breast cancer. The resource includes a virtual tour on understanding the progression of breast cancer, from where it starts to how it affects the body. You can see the guide here:

Thursday, January 20, 2011

My thoughts are with Daria

Every day I log onto read Daria's blog. Called daria-livingwithcancer, every day she writes in the morning. Daria, who lives in Canada, has metastatic breast cancer and has been on a trial. It shrunk her tumours but affected her liver badly. Now her husband, whom she always referred to as D, has identified himself as Don and says she is no longer able to post to her blog. She is in hospital and not really able to talk but knows what is happening around her. Daria has been an inspiration. Read her blog and see what she has written and how people have responded to her. Feeling very emotional about it all.

arm great too

After yesterday's all clear mammogram and ultrasound, and the doctor so exuberant and ast over-the-top as he exclaimed: "You are cured!" I am again very happy that my arm, at risk for lymphedema, is very good.
Hope it will now stablise so that I don't have to go see The Lymph Lady every week. She is excellent and I really like her and will probably miss her, but it would be wonderful - and cheaper - to see her less frequently. Plus she has just gone up in price from about R392-something to R421-something or other....

Yet when I suggested I don't come next week, she thought I should cos I am flying (locally, a 2 hour flight) on Tuesday. "It's always good to have a good drainage (I think that's the word she used) before a flight".

Think I have spent about R3000 on medical costs since Saturday - GP re suspected German measles on Saturday, plus blood tests for which I did not have to pay upfront, a mammogram and ultrasound for R1110 or something like that, The Lymph Lady for R421.. mmm.. am missing something but cannot think what. Else I am mistaken. It's about R2000. Tired. Still have to wash the dishes. Oh, my arm was so good today cos lost another 0.4kg. Every little bit helps. Then ate Christmas cake tonight....

Wednesday, January 19, 2011

All fine!

Had my annual mammogram and ultrasound. You are cured, says doctor, it came quickly, it went quickly, the best kind, and there is no residual even of where it was, he said.
I feel great. But he did say muga scan is unlikely to go up much if it was caused by the A/C chemo. That scan is on monday but no cancer!!!!!!!!

Tuesday, January 18, 2011

annual mammogram and scan tomorrow

At 12.30am tomorrow have annual mammogram and scan. Brought it forward from Monday as the idea of doing two scans on one day, and then leaving to go away on holiday the next day, was just too stressful. So having the mammogram and scan tomorrow and the muga on Monday.

Feeling calm.Went to yoga tonight and it was fabulous. Just realised haven't done it for a while as had tickbite fever last year so missed most of December's classes and then choose to spend the evening with someone going back to London last week when classes resumed.

Praying I am ok.  Won't be good if I am not but I will plod along and do what needs to be  done if it's not. Gonna think good thoughts.

Monday, January 17, 2011

phew!! it's not german measles

Got blood test results today. But doctor took so long to contact me (I phoned and left a message at about 2pm; he phoned me after 5pm) that I could not decide if it was good news or not. Anyway, it is good news.
I don't have rubella (german measles) and in fact have antibodies against it in my body. Not sure how that happened as cannot remember being immunised against it.
Then my full blood count was fine so my immune system is fine.
However, my IGE or Immunoglobulin is raised: 39.2 where normal is 22 so my bumps are an allergy and I must keep taking the anti-histamine as needed. Oy, just been reading stuff online about link between breast cancer and raised IGE levels but not going to think about that, especially since internet research on medical issues is super risky.
PS: Just went to that great authoritative cancer site, The American  Cancer Society and feeling relieved. I have an allergy and that is that. Three years ago, on New Year's Eve in December 28, I also got an inexplicable rash that was so severe I had to have a cortisone injection. Was hyped up now cos that was just before I was diagnosed with cancer... (I found the lump on the morning of Christmas Eve that year), but hell, it is just a co-incidence. Did not get that rash then cos had cancer; The Tango Man said the cancer had been in my body for 6 to 9 months by the time I felt the lump.

Saturday, January 15, 2011

Today is two years

Today is two years since I was diagnosed with breast cancer in the lymph. Two nodes. Four chemos, radiation, 17 treatments of herceptin and now on tamoxifen. And fine..... Got annual Mammogram and ultrasound on wednesday - and so nervous that brought it forward by a few days cos can't bear the tension, keep thinking: if the result is bad, if the cancer is back, I'm doomed cos 90% of my treatment has been preventative - chemo took cancer away 100% - but meanwhile, got other things on my mind. Lol!!! Woke up covered in bumps. Been to doctor, been for blood tests - might have german measles! Hilarious!

PS: Watch this video. First watched it on Daria's  blog

Monday, January 10, 2011

about having heart

Julie Goodale is admirable. I don't know her as such, have never met her - for starters we live in different continents although I have missed the US about three times I think, but long before I had cancer and read Julie's blog.
Read fitness for survivors - the day before nerves and see what I mean. It's all about having heart.
Some people are just plain inspiring.

Saturday, January 8, 2011

Rather Rattled

Apart from the fact that I was playing with the layout and colours of this blog last night and have now messed it up big time, which is annoying me no end, I am getting rather peeved with being told I am a hypochondriac.
It's the damn tick bite fever, you see. It is not getting better. Well, it's better but not gone, and have inconsistent sharp, burning pains in spots on my head, on the side just above where the tick bit me behind my ear.
Now I am not imagining this pain. And considering I have been on two sets of antibiotics, twice (had to get more meds when I was in Lesotho as the pain got so bad), surely something is wrong? Surely the antibiotics are strong enough to wipe out whatever infection is there?
I also get so angry when told I am a hypochondriac, that I am over-reacting kind of thing, 'cos when I think back to when I first found the lump, almost two years ago in fact - sjoe, can hardly believe that - well, if I had decided that I had had a mammogram and scan barely two months before and so decided to ignore it, instead of going to see the doctor the same day, well, I hate to think about what would have happened. I would most probably have been riddled with cancer.
So I happen to think it's a good thing that I am so body-aware, and that I act on things, instead of pretending they don't exist.