D-day arrived three days ago. I started to take the Cyclophosphamide pills. This is one of the cytotoxic agents that I have to take to kill the cancer cells. The other two are Methotrexate and 5FU. These are given as 'bolus injections' at the Cancer Centre. The treatment is in cycles of three weeks, as follows:
Week 1 - Methotraxate+5FCU+Cyclophosphamide 4 pills taken orally daily for 14 days.
Week 2 - 5FU+continue Cyclophosphamide.
Week 3 - rest - no cytotoxic agents.
At least, that was the original plan. With the bad reaction I had to Cycle 1, the protocol has been changed. I have to take only three pills for 14 days. But that will end on June 4th, the day I start Cycle 2, so I am not quite sure just how it's been adjusted. I forgot to ask.
There's just too many things to think about and my mind keeps wondering off the cancer treatment. This time I made the decision not to check on side effects until I don't feel well. Last time I checked the internet when I was in treatment, I found the details of the side effects so frightening that I don't want to face that fear again. My view at the moment is that one has to trust one's team. I do. So, I just go with the flow as far as the medications are concerned.
Mind you, I feel I am a walking pharmacy at the moment.
Normally, I take two types of medication: one for thyroid (which they took out in 1993) and one for blood pressure. Now? Let me see. I don't think I'll bore you with all the names, but enough to say that there are two different pills for the stomach, the Cyclophosphamide, and now antibiotics for cellulitis that developed around the peritoneal port they put in while I was in hospital. This makes drainage a breeze, as I discovered last Tuesday, when I went in to get the inflammation around the port checked and lovely Keith (head of the chemo unit) took one look at me and said: 'It's cellulitis. It happens, so we'll give you antibiotics and, I think we'll drain you too'.
Now, lest you think it's all gloom and doom in the cancer world, let me tell you what happened while I was being drained. First of all, it was really easy. Without the port one would have to wait to go down to ultrasound for the radiologist to check where is the best place for the doctor to insert the drainage tube. The tech marks the place on the abdomen and the patient can't move at all until the drainage tube is inserted by the doctor upstairs in the 'chemo lounge' or the ward. With my 'port' the chemo nurse simply inserted the needle attached to the drainage tube and voila, the fluid was flowing. No waiting.
While the nurse was doing this, a new patient arrived beyond the curtain and I heard, what I thought was a familiar voice. I thought it was Martha, one of the patients I met 3-4 weeks ago when I first went into emergency to be drained and stayed for a week. She is Greek, with a large, wonderful family. We clicked and decided to keep in touch. I told the nurse that I thought I knew the patient, but didn't want to bother her. A minute later, a voice comes over the partition: 'Elizabeth, is that you?' Sure enough, it was Martha. Last time we talked 3-4 weeks ago was when her mother and sister arrived from Greece. She came to be drained too. With her were her sister, , her husband and her daughter. We had a wonderful, laughter filled afternoon, while I was being drained (it takes a couple of hours) and Martha, who has no 'port', was waiting to be taken to radiology for the ultrasound. When she was gone, the 'visit' countinued with her family.
There are two people I decided to keep in touch with from my two hospital stays in April and May. Both are amazing women with far more advanced cancers than I have. I am in awe of their resilience in the face of their suffering. I am also delighted to know them, because they are interesting and fun. And it is really important to have normalcy while you go through this cancer journey. Having fun and games is definitely on the agenda. I am really looking forward to having more energy, when I can visit Martha and Marie and play scrabble and exchange jokes. Or, just simply moan together and laugh about it, without being told how brave we are. Laughter is medicine. You have to keep your sense of humour or you may as well just give up. For me, giving up is not an option, so I'll stick to laughter, which comes easily now as I have had no bad side effects yet from the Cyclophosphamide. May it continue so.
Friday, May 24, 2013
Friday, May 17, 2013
In limbo
The days pass. Every day I feel a little stronger physically and make promises to myself that 'tomorrow I will structure my days to get back to 'normal'. It never seems to happen.
What is normal? I have forgotten. What does it feel like to have unending, inexhaustible energy? In my memory bank I remember I used to have that, and I was always very conscious and grateful for it, because it allowed me to get everything done. I never understood the source of all that strength and energy. Well, it's all gone now. Time and the days just pass, whether I structure it or not.
Similar to the Gregorian calendar we mark time by, my memory bank is partitioned into two historic periods: BC and AC. In my case, these refer to Before Cancer and After Cancer: before 2006 and after 2006. And as I write this, the tears come. I mourn my healthy self. Is that depression? I don't think so.
I've always been a weeper. It's just that the tears come more easily now. I can't cope with stress and negative emotions. My body tells me it has enough to deal with, negative emotions are the enemy of recovery. The tears come to wash away all negativity and, like sunshine after the rain, my mood lifts and my energy returns. Now, for that walk. I'll try and make it 30 minutes today. The afternoon autumn sunshine outside beckons.
ps. Yes, I made it. Walked 30 minutes, just over a kilometre round trip. Yay! Leisurely stop at my local cafe on the way back. Feel like a champ.
What is normal? I have forgotten. What does it feel like to have unending, inexhaustible energy? In my memory bank I remember I used to have that, and I was always very conscious and grateful for it, because it allowed me to get everything done. I never understood the source of all that strength and energy. Well, it's all gone now. Time and the days just pass, whether I structure it or not.
Similar to the Gregorian calendar we mark time by, my memory bank is partitioned into two historic periods: BC and AC. In my case, these refer to Before Cancer and After Cancer: before 2006 and after 2006. And as I write this, the tears come. I mourn my healthy self. Is that depression? I don't think so.
I've always been a weeper. It's just that the tears come more easily now. I can't cope with stress and negative emotions. My body tells me it has enough to deal with, negative emotions are the enemy of recovery. The tears come to wash away all negativity and, like sunshine after the rain, my mood lifts and my energy returns. Now, for that walk. I'll try and make it 30 minutes today. The afternoon autumn sunshine outside beckons.
ps. Yes, I made it. Walked 30 minutes, just over a kilometre round trip. Yay! Leisurely stop at my local cafe on the way back. Feel like a champ.
Thursday, May 16, 2013
What now?
Today I reached a couple of milestones. I walked to Urban Bites, my resident cafe, which is about three blocks from my house. It only took 8 minutes, but it's the first time I've been able to reach it since I left the hospital last week. I must have looked a sorry sight, because the waitress, who was new to me, shouted me the coffee. That was nice of her, but boy, did I look that pathetic?
I had a latte, hoping that all that the milk would modify the acidity of the brew. This was my first coffee in weeks, if not months. It tasted fabulous and also cleared the mush from my head. On the way home, I stopped at a manchester shop to buy a mattress protector I've been meaning to buy since I moved. Altogether, I walked 25 minutes! Another milestone.
So, what now, you may ask. Well, yesterday I went to see the Professor. I had a hard time walking and he was really wonderful and didn't mind my asking to lean on his arm while we walked into his office from the waiting room. That's why I love this guy. He may be the head honcho, but he is human - a mensch. He listens and let's me complain when I need to, and in-between he plies me with dreadful jokes that make me laugh. And most of all, he can do a diagnosis the old fashioned way and uses tests to confirm or deny his diagnosis. Just like my Dad did. He told me from the beginning that he suspected exactly what the tests indicated I have.
Yesterday, Prof said I was improving: my blood picture, that is. This means we can continue with the chemo. At my request he changed the class of hormone pills I have to take (the previous ones work through the adrenals and I have enough problems with those, thank you very much). These are called Exemestane. I started taking them yesterday. I have learned one thing. Don't look up any drugs on the internet until you have symptoms that may be side-effects, so I am not giving the URL at this time.
For some reason I had the impression that we were restarting the chemo. This is not so. Evidently, the first one that laid me low was number one and I will have to restart the the Cyclophosphamide pills again on 22 May.
The second cycle will start on 4th June, when they will give me an IV 'bolus' of 5FU and Methotrexate. That's what made me so ill the last time. However, this time my cousin Anna will come up from Melbourne to be with me, in case I have a bad reaction again. I am fervently hoping that I won't.
Concurrent to this 'bolus', I will take the Cyclophosphamide for 14 days, after which I will have a week off from everything, except the hormone pills. And so it will continue, in three week cycles, until Prof is satisfied that the cancer cells are dead and the ascites is gone. Long live the healthy cells!
I had a latte, hoping that all that the milk would modify the acidity of the brew. This was my first coffee in weeks, if not months. It tasted fabulous and also cleared the mush from my head. On the way home, I stopped at a manchester shop to buy a mattress protector I've been meaning to buy since I moved. Altogether, I walked 25 minutes! Another milestone.
So, what now, you may ask. Well, yesterday I went to see the Professor. I had a hard time walking and he was really wonderful and didn't mind my asking to lean on his arm while we walked into his office from the waiting room. That's why I love this guy. He may be the head honcho, but he is human - a mensch. He listens and let's me complain when I need to, and in-between he plies me with dreadful jokes that make me laugh. And most of all, he can do a diagnosis the old fashioned way and uses tests to confirm or deny his diagnosis. Just like my Dad did. He told me from the beginning that he suspected exactly what the tests indicated I have.
Yesterday, Prof said I was improving: my blood picture, that is. This means we can continue with the chemo. At my request he changed the class of hormone pills I have to take (the previous ones work through the adrenals and I have enough problems with those, thank you very much). These are called Exemestane. I started taking them yesterday. I have learned one thing. Don't look up any drugs on the internet until you have symptoms that may be side-effects, so I am not giving the URL at this time.
For some reason I had the impression that we were restarting the chemo. This is not so. Evidently, the first one that laid me low was number one and I will have to restart the the Cyclophosphamide pills again on 22 May.
The second cycle will start on 4th June, when they will give me an IV 'bolus' of 5FU and Methotrexate. That's what made me so ill the last time. However, this time my cousin Anna will come up from Melbourne to be with me, in case I have a bad reaction again. I am fervently hoping that I won't.
Concurrent to this 'bolus', I will take the Cyclophosphamide for 14 days, after which I will have a week off from everything, except the hormone pills. And so it will continue, in three week cycles, until Prof is satisfied that the cancer cells are dead and the ascites is gone. Long live the healthy cells!
Wednesday, May 15, 2013
The System
Before I tell you about my meeting with the Professor yesterday, I think I better explain some things about the Australian Health System. Having lived in the US for 24 years, where you have to be pretty well indigent to access similar services, if at all, I am constantly amazed by the humanness of what we have here. Of course that doesn't mean it's perfect - by no means. People fall through the cracks all the time and people die for not getting the right treatment, just like anywhere else. BUT. I can only talk about my own experience to date and it has been amazing.
In Australia we have a right to free medical and social services, including subsidised housing, doctors and hospitals and home help after hospitalisation. (My US friends please note, that this is an 'entitlement'.) There's a complex system of who pays for what (I may get this wrong): The Federal Government pays for Medicare (doctors visits, medicines), the State for hospitals and social services. Some of the in-home services are free for a short time post-hospital, and there are many charitable and/or community organisations that can take over after this service runs out.
So, to cut to the chase (you can check the above link for more info on the system), this is how it worked for me.
A few years ago, I realised I was running out of funds as I couldn't do my freelance science writing busienss as robustly as before 2006. I supplemented my income with a temping job (doing health survey interviews for the NSW Health Department) and applied for subsidised housing. Last year, when I had to undergo radiation treatment again and couldn't work in my temping job either, I changed the application from general, to 'emergency' . You have two chances to accept an offer. If you don't, your name goes to the bottom of the list, or you may be knocked off altogether, because the State can't keep up with demand.
After knocking back one offer earlier this year, I was offered a lovely one bedroom apartment, with a garden, less than one kilometre from my cancer treatment centre at the Royal Prince Alfred Hospital (RPAH). On a good day, I can easily walk there. I grabbed it. Unfortunately, I was already ill with the ascites and in hospital emergency on the moving date, which was 4 February, 2013. Two weeks later, I emerged from the hospital, much weaker but, with help from friends and even the removalist, I made the move on 20 February. Unpacking the boxes was an exercise in learning to accept and ask for help from many friends. The outpouring of support was humbling, to say the least.
Since my move, I spent another another 3 weeks in hospital in April and May, the last two after we started the chemotherapy on 19th of May. It was very traumatic, because I was throwing up 8-9 times a day and couldn't sleep because my body refused to work properly. In addition to being full of heavy fluids, I was sleep deprived and sick. Not a happy combination. The nursing staff was amazing, the medical staff somewhat uneven (too many students, registrars who didn't know how to insert a cannula , no bedside manners, etc). The social workers were amazing too and now, having returned home, they have arranged for me to have someone come in once a week, for the next six weeks, to help me with my grocery shopping and once every fortnight with cleaning the apartment (free of charge to me). They have also organised for me to be picked up by a volunteer driver when I have to go to the hospital and can't walk or take the bus. At the moment this is really helpful, as I have not been able to walk by myself very far yet. And sitting on a bus is a nauseating experience with all the fluid sloshing around in my belly.
The chemotherapy is expected to last for 12 weeks. After the six weeks, my community organisation, JewishCare will supplement any home services I may need at a very reasonable, subsidised rate. They have been absolutely fantastic too, not to mention my friends and acquaintances, who have been supplying me with home cooked meals and gifts of warm winter clothing and intelligent books to keep my mind alert. Much more of that later as we continue on this journey. For now, I just wanted to explain how the system works for me. Not bad, ey?
In Australia we have a right to free medical and social services, including subsidised housing, doctors and hospitals and home help after hospitalisation. (My US friends please note, that this is an 'entitlement'.) There's a complex system of who pays for what (I may get this wrong): The Federal Government pays for Medicare (doctors visits, medicines), the State for hospitals and social services. Some of the in-home services are free for a short time post-hospital, and there are many charitable and/or community organisations that can take over after this service runs out.
So, to cut to the chase (you can check the above link for more info on the system), this is how it worked for me.
A few years ago, I realised I was running out of funds as I couldn't do my freelance science writing busienss as robustly as before 2006. I supplemented my income with a temping job (doing health survey interviews for the NSW Health Department) and applied for subsidised housing. Last year, when I had to undergo radiation treatment again and couldn't work in my temping job either, I changed the application from general, to 'emergency' . You have two chances to accept an offer. If you don't, your name goes to the bottom of the list, or you may be knocked off altogether, because the State can't keep up with demand.
After knocking back one offer earlier this year, I was offered a lovely one bedroom apartment, with a garden, less than one kilometre from my cancer treatment centre at the Royal Prince Alfred Hospital (RPAH). On a good day, I can easily walk there. I grabbed it. Unfortunately, I was already ill with the ascites and in hospital emergency on the moving date, which was 4 February, 2013. Two weeks later, I emerged from the hospital, much weaker but, with help from friends and even the removalist, I made the move on 20 February. Unpacking the boxes was an exercise in learning to accept and ask for help from many friends. The outpouring of support was humbling, to say the least.
Since my move, I spent another another 3 weeks in hospital in April and May, the last two after we started the chemotherapy on 19th of May. It was very traumatic, because I was throwing up 8-9 times a day and couldn't sleep because my body refused to work properly. In addition to being full of heavy fluids, I was sleep deprived and sick. Not a happy combination. The nursing staff was amazing, the medical staff somewhat uneven (too many students, registrars who didn't know how to insert a cannula , no bedside manners, etc). The social workers were amazing too and now, having returned home, they have arranged for me to have someone come in once a week, for the next six weeks, to help me with my grocery shopping and once every fortnight with cleaning the apartment (free of charge to me). They have also organised for me to be picked up by a volunteer driver when I have to go to the hospital and can't walk or take the bus. At the moment this is really helpful, as I have not been able to walk by myself very far yet. And sitting on a bus is a nauseating experience with all the fluid sloshing around in my belly.
The chemotherapy is expected to last for 12 weeks. After the six weeks, my community organisation, JewishCare will supplement any home services I may need at a very reasonable, subsidised rate. They have been absolutely fantastic too, not to mention my friends and acquaintances, who have been supplying me with home cooked meals and gifts of warm winter clothing and intelligent books to keep my mind alert. Much more of that later as we continue on this journey. For now, I just wanted to explain how the system works for me. Not bad, ey?
Third time lucky?
Welcome to my new blog about my latest attempts to come to terms with living with breast cancer for the rest of my life! And welcome back, if you have shared my original cancer journey that I detail in my first blog: Boobs Blues. Your support then, and today is life sustaining. Thank you!
For the newcomers, let me just quickly explain that I was originally diagnosed with lobular breast cancer in the right breast in Sept 2006. I went through lumpectomy, chemotherapy, radiation treatment and five years of hormone therapy. On my 5th annual checkup, in November 2011, when I expected to be cleared and get on with my life, I was diagnosed with pre-cancer of the invasive lobular type in the left breast. Another lumpectomy and radiation treatment. I refused hormone therapy; after all, it was only pre-cancer and I have had enough of unpleasant side-effects - joint pain, neuropathy in both feet, and some others. My doctors agreed.
One year on, in November 2012, I started experiencing strange symptoms that eventually landed me in hospital emergency on February 2 of this year (2013), with a suspected bleeding ulcer. It was then that it was discovered that I had ascites, or fluid in the abdomen. After two weeks of head scratching, the doctors in that hospital let me go and referred me back to my cancer team at the Sydney Cancer Centre.
I have to admit that I love my cancer team. I think they are the best. However, it also took them a while to confirm the cause of the ascites - lobular breast cancer cells lurking in the abdominal lining - and start appropriate chemotherapy treatment.
The way I understand it, these old cancer cells that survived two lots of treatment, are now looking for a home in one or more of my lovely, healthy major organs. With the current chemotherapy the cells can be zapped, the ascites resolved and I can go back to my life, albeit with the knowledge that the cancer may recur again, and again.
Last year, my radiation oncologist, Dr JT, told me: 'I now think of cancer as a chronic disease.' I found this description comforting, because I do have a chronic condition that I have learned to live with since 1985, so I reckoned I can learn to live with this too.
Now, I am not so sure. So far, this has been the worst nightmare experience of my cancer journey. I spent two weeks in hospital, lost a lot of weight, and am now as weak as a baby learning to walk. On the bright side, I did go to the shops today and, with help, I got my groceries, rather than order them on line.
For the newcomers, let me just quickly explain that I was originally diagnosed with lobular breast cancer in the right breast in Sept 2006. I went through lumpectomy, chemotherapy, radiation treatment and five years of hormone therapy. On my 5th annual checkup, in November 2011, when I expected to be cleared and get on with my life, I was diagnosed with pre-cancer of the invasive lobular type in the left breast. Another lumpectomy and radiation treatment. I refused hormone therapy; after all, it was only pre-cancer and I have had enough of unpleasant side-effects - joint pain, neuropathy in both feet, and some others. My doctors agreed.
One year on, in November 2012, I started experiencing strange symptoms that eventually landed me in hospital emergency on February 2 of this year (2013), with a suspected bleeding ulcer. It was then that it was discovered that I had ascites, or fluid in the abdomen. After two weeks of head scratching, the doctors in that hospital let me go and referred me back to my cancer team at the Sydney Cancer Centre.
I have to admit that I love my cancer team. I think they are the best. However, it also took them a while to confirm the cause of the ascites - lobular breast cancer cells lurking in the abdominal lining - and start appropriate chemotherapy treatment.
The way I understand it, these old cancer cells that survived two lots of treatment, are now looking for a home in one or more of my lovely, healthy major organs. With the current chemotherapy the cells can be zapped, the ascites resolved and I can go back to my life, albeit with the knowledge that the cancer may recur again, and again.
Last year, my radiation oncologist, Dr JT, told me: 'I now think of cancer as a chronic disease.' I found this description comforting, because I do have a chronic condition that I have learned to live with since 1985, so I reckoned I can learn to live with this too.
Now, I am not so sure. So far, this has been the worst nightmare experience of my cancer journey. I spent two weeks in hospital, lost a lot of weight, and am now as weak as a baby learning to walk. On the bright side, I did go to the shops today and, with help, I got my groceries, rather than order them on line.
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