'I am sorry, but I am NOT clinically depressed!' - I screamed in my head, as a friend (not the first, nor probably the last) who suffers from clinical depression veered off into a description of her condition as a way of empathising with me, and to 'make me feel better'. She was not to know that this was the last straw for me. I am tired of people trying to comfort me, either by telling me that I have something similar to what they do, or by telling me that my situation is not so bad compared to theirs and go into great detail about whatever medical conditions they have.
I have finally had it. I have my own problems and I am not strong enough to listen to others' ad infinitum!
I have not been well at all since July or August, when the Exemestane stopped working. We have tried several combinations of pills: Everolimus alone, in combination with Exemestane, lower dose of Everolimus and now this Megace. Either they don't work, or they work, but the side effects are unbearable. I live in limbo, floating from unpleasantness to unpleasantness - mostly sleeping. With this Megace I sleep 6-9 hours a night and then have 4-5 hours of naps during the day in small increments. And when I say nap, I mean I get so sleepy that I am off with the fairies as soon as my head hits the pillow. I can barely walk. I have difficulty getting up from a sitting to a standing position, and with Megace I sometimes have difficulty breathing. I have trouble driving at night, so I go out only when I can get a ride. Yesterday I realised I get too tired in large crowds, even when it's people I have known for years and really want to catch up with. Yet!
I keep my calendar active. I diarise every event I am interested in attending. I am active on social media and the phone. I stopped buying theatre tickets, but if I must, I do. The reality is that I am fully engaged in life, but in small doses. I am tending my garden and hopefully will start going back to swimming again this week. I did do some qigong a couple of times last week, and I continue to focus on my social justice project.
I really don't see how my symptoms are similar to clinical depression! My brain is a bit foggy, but we've been there before, with 3 years' of chemo-brain. That's why I do brain exercises BrainHQ and Lumosity, so it won't get really bad. Actually, it is quite fascinating how, with Lumosity, you can track your brain function changing with the different medications. (Yes, it's fascinating for an ex-science/medical writer).
I am getting tired of people trying to analyse 'what's wrong with me' and telling me that maybe the Professor is not so amazing after all. Well, that sometimes does go through my mind, but then this week I remembered a similar situation, when I had very strange symptoms and it took 35 tries to find a medication that my body would tolerate. That was almost 30 years ago and I am still here, and the medicine still works for that problem.
The memory of those times brought into focus very clearly that I am going through the same thing. My sensitive body is rebelling against the onslaught of heavy medication. Eventually, we will find the right one, and until then, I just have to manage the best I can. For the first time, it really forces me to make those end-of life decisions that I have refused to face. Actually, that part hasn't been as hard as I thought it would be. It's been very enlightening, and I am at peace with it all. Now, it's learning to accept how other people react to my condition that's proving so bloody hard to deal with.
The truth is that I may live anywhere from 1-20 years and life it still beautiful. The devil is in the detail.
Showing posts with label Exemestane. Show all posts
Showing posts with label Exemestane. Show all posts
Sunday, December 14, 2014
Friday, November 7, 2014
Setbacks and poo days
How much poo can a human body hold? A lot. That was my great discovery this past week. Exactly a week ago I started vomiting. After the fourth bout I called the Lifehouse and they told me to go to emergency. I am really blessed with friends and one took me almost immediately. Four hours later I was admitted to my very own private room.
The view itself was worth it, but nothing else. Pain, frustration, two days of vomiting and after five days I was declared 'cleansed' of poo and allowed to leave.
In the meantime, the Professor confessed that he is running out of affordable options to try to control my cancer. 'It's slow growing', he said, but my mind went wild. What if he can't find a pill I can afford? What if the slow growing becomes fast growing? What does it mean to have such a bloated belly? Will I ever get a waist again? Will I ever get to see my son and family in the US? Weep, weep, weep.
When I came back down to earth, the Prof explained that the vomiting is caused by a full gut. Despite the fact that I had been regular as clockwork, either because of the medication, or the cancer in the Omentum, the gut did not void properly. and when I put anything in my mouth, there was nowhere for it to go, but back up. The lucky thing was that there was no blockage. Well, that sure is a blessing, because I know two women of a certain age, who have had blocked bowels this year and had to have life saving surgery. I really don't want to go under the knife again. So, what can I do about it? Take laxatives and wake up at night when they take effect. There goes a good night's sleep.
So, good bye Exemestane and Everolimus. I am now taking Megace. We shall see.
In the meantime, my much anticipated visit to the US on 22 November has been cancelled. I have to be stabilised before I can take such a long trip. I have to admit that it's a relief. I simply don't feel up to it. Physically, that is. Mentally, and emotionally I am crushed. Nobody makes tea like my son when I am sick. Nobody gives hugs like my family. I miss them all.
In the meantime, the Professor confessed that he is running out of affordable options to try to control my cancer. 'It's slow growing', he said, but my mind went wild. What if he can't find a pill I can afford? What if the slow growing becomes fast growing? What does it mean to have such a bloated belly? Will I ever get a waist again? Will I ever get to see my son and family in the US? Weep, weep, weep.
When I came back down to earth, the Prof explained that the vomiting is caused by a full gut. Despite the fact that I had been regular as clockwork, either because of the medication, or the cancer in the Omentum, the gut did not void properly. and when I put anything in my mouth, there was nowhere for it to go, but back up. The lucky thing was that there was no blockage. Well, that sure is a blessing, because I know two women of a certain age, who have had blocked bowels this year and had to have life saving surgery. I really don't want to go under the knife again. So, what can I do about it? Take laxatives and wake up at night when they take effect. There goes a good night's sleep.
So, good bye Exemestane and Everolimus. I am now taking Megace. We shall see.
In the meantime, my much anticipated visit to the US on 22 November has been cancelled. I have to be stabilised before I can take such a long trip. I have to admit that it's a relief. I simply don't feel up to it. Physically, that is. Mentally, and emotionally I am crushed. Nobody makes tea like my son when I am sick. Nobody gives hugs like my family. I miss them all.
Saturday, October 25, 2014
Sleeping Beauty
One of the first questions doctors ask me is: how do you sleep? Fine, I say. In fact, sleeping is the only thing I do quite well at the moment, thank you. With all the pill changes of late, the one thing that has been consistent is my ability, nay the need, to sleep any time.
In the past couple of weeks I have become a veritable sleeping beauty. I get tired easily and every time I get home, the first thing I do is crash on the bed and – yes, you've guessed – sleep. Yesterday I was in so much pain from the Exemestane, which I am back on every day again, that I had a bit of trouble with the sleep. But I have to admit that, even with that I must have slept through most of the afternoon and the night.
This morning I had my hair cut. Then, I had coffee with my friend Sue and did a very little grocery shopping, while the lads in the car wash resuscitated my Mitsubishi Mirage to its proper glory. I barely made it to the car, I was so exhausted and.... yes, crash time.
Two hours later, I am up and about. Almost bright eyed and bushy tailed. Well, not quite. My shoulder has just started complaining of pain. My brain wants a break and my garden says: hey girl, it's time to do some weeding.
OK, I'll heed the call. I wonder how long I'll have the energy to liberate the lemon tree from the encroaching grass.
In the past couple of weeks I have become a veritable sleeping beauty. I get tired easily and every time I get home, the first thing I do is crash on the bed and – yes, you've guessed – sleep. Yesterday I was in so much pain from the Exemestane, which I am back on every day again, that I had a bit of trouble with the sleep. But I have to admit that, even with that I must have slept through most of the afternoon and the night.
This morning I had my hair cut. Then, I had coffee with my friend Sue and did a very little grocery shopping, while the lads in the car wash resuscitated my Mitsubishi Mirage to its proper glory. I barely made it to the car, I was so exhausted and.... yes, crash time.
Two hours later, I am up and about. Almost bright eyed and bushy tailed. Well, not quite. My shoulder has just started complaining of pain. My brain wants a break and my garden says: hey girl, it's time to do some weeding.
OK, I'll heed the call. I wonder how long I'll have the energy to liberate the lemon tree from the encroaching grass.
Saturday, October 4, 2014
Oops! I goofed
The respite didn't last long. But it was so nice...... (sigh)
Ah well, back to reality.
And stupidity
And new challenges.
First the stupidity.
I goofed. Big time. Last time I saw the Professor, I thought he said I have to take the Everolimus and forget about the Exemestane. For almost two weeks I did just that. The pain in my joints disappeared (Hurrah!), but I was really fatigued. I could barely move. Then, I got the Prof's letter to my GP (I always get a copy) and it seemed to say that I should be taking the Exemestane and the Everolimus together. WTF! (excuse my language) I've already taken back my two boxes of Exemestane to the pharmacy to be properly disposed of.
I called the hospital and yes, the Prof came to the phone. 'You take it together.' OK, but one has to be taken with food and the other one on an empty stomach and I usually take both at night. Well, you take the one with the food, wait two hours and take the other one. Yes, OK, simple, I understand, but really....
New obsession to get used to. Have dinner latest by 8pm and take the Everolimus 2-3hrs later. I can deal with that, even if it embarrasses me. My iPhone alarm is set for 8pm for the Exemestane. It rings when I am out in company. 'I am sorry, that's my alarm.'
I just hope I don't forget to turn it off in the theatre or other quiet place I go to. My mind is a bit mush nowadays.
Now, as if all that were not enough, on Thursday night I woke up with a pain in my neck. Seemed like a ping-pong ball was hiding in there pressing against my windpipe. I was terrified. It was way after midnight and I had no idea what to do. I had just started the new pill combo on Wednesday! Is this one of the side effects? OMG!
I breathed deeply to calm down and waited until the morning to talk with lovely Keith Cox at Lifehouse. He thought it may be an infection, but let me talk to the pharmacist to discuss the possibility of a drug reaction. No, the golf ball is definitely not a side effect. I was much relieved and we discussed other changes I've noticed, such as a slightly bloody runny nose, very dry skin on the face and elsewhere, as well as very dry nostrils. She said that was from the Everolimus.
Now that I know the cause, I have some treatments for these side effects. For the dry skin I use QV cream and shower wash. It seems to work OK, and for the dry nose I have resorted to Hungarian folk medicine and do chamomile inhalation. I love it, because it's also a great facial and it clears the nose and lungs. I feel so fresh after.
As to the mini-golf balls in my neck? One of my friends had a terrible cold that turned into pneumonia. She has been struggling with that for weeks and weeks. She told me her cold started with swollen glands. OK, so that's probably what I got too. A bloody cold.
We are having a long Labour Day weekend here in Sydney, so nothing is open and my condition is not an emergency, so I am going to wait until Tuesday (two more days???) to see my family doctor. In the meantime, I just treat it like a cold, but am resting more and making sure that the body is properly taken care of.
So, my new ode to my body?
Hey little bod, you've been through the trenches.
I am going to try and help you in any way I can.
I'll treat you like a friend and put our differences behind us.
In return, please get well, so I can get on the plane in November
and see my boys and girls.
Let's see if we can have some fun for a change. Just you, me, and the family!
Ah well, back to reality.
And stupidity
And new challenges.
First the stupidity.
I goofed. Big time. Last time I saw the Professor, I thought he said I have to take the Everolimus and forget about the Exemestane. For almost two weeks I did just that. The pain in my joints disappeared (Hurrah!), but I was really fatigued. I could barely move. Then, I got the Prof's letter to my GP (I always get a copy) and it seemed to say that I should be taking the Exemestane and the Everolimus together. WTF! (excuse my language) I've already taken back my two boxes of Exemestane to the pharmacy to be properly disposed of.
I called the hospital and yes, the Prof came to the phone. 'You take it together.' OK, but one has to be taken with food and the other one on an empty stomach and I usually take both at night. Well, you take the one with the food, wait two hours and take the other one. Yes, OK, simple, I understand, but really....
New obsession to get used to. Have dinner latest by 8pm and take the Everolimus 2-3hrs later. I can deal with that, even if it embarrasses me. My iPhone alarm is set for 8pm for the Exemestane. It rings when I am out in company. 'I am sorry, that's my alarm.'
I just hope I don't forget to turn it off in the theatre or other quiet place I go to. My mind is a bit mush nowadays.
Now, as if all that were not enough, on Thursday night I woke up with a pain in my neck. Seemed like a ping-pong ball was hiding in there pressing against my windpipe. I was terrified. It was way after midnight and I had no idea what to do. I had just started the new pill combo on Wednesday! Is this one of the side effects? OMG!
I breathed deeply to calm down and waited until the morning to talk with lovely Keith Cox at Lifehouse. He thought it may be an infection, but let me talk to the pharmacist to discuss the possibility of a drug reaction. No, the golf ball is definitely not a side effect. I was much relieved and we discussed other changes I've noticed, such as a slightly bloody runny nose, very dry skin on the face and elsewhere, as well as very dry nostrils. She said that was from the Everolimus.
Now that I know the cause, I have some treatments for these side effects. For the dry skin I use QV cream and shower wash. It seems to work OK, and for the dry nose I have resorted to Hungarian folk medicine and do chamomile inhalation. I love it, because it's also a great facial and it clears the nose and lungs. I feel so fresh after.
As to the mini-golf balls in my neck? One of my friends had a terrible cold that turned into pneumonia. She has been struggling with that for weeks and weeks. She told me her cold started with swollen glands. OK, so that's probably what I got too. A bloody cold.
We are having a long Labour Day weekend here in Sydney, so nothing is open and my condition is not an emergency, so I am going to wait until Tuesday (two more days???) to see my family doctor. In the meantime, I just treat it like a cold, but am resting more and making sure that the body is properly taken care of.
So, my new ode to my body?
Hey little bod, you've been through the trenches.
I am going to try and help you in any way I can.
I'll treat you like a friend and put our differences behind us.
In return, please get well, so I can get on the plane in November
and see my boys and girls.
Let's see if we can have some fun for a change. Just you, me, and the family!
Wednesday, September 17, 2014
Words and Definitions
So, the week is over. I saw the Professor this morning and the news is not good. The cancer markers are rising. The body was right. The Exemestane is not working anymore. He is now putting me on a new drug, called Everolimus. What kind of name is that? I wonder who dreams up these drug names. Of all the medications I've had to take over the years, this is the strangest name, for sure. There must be a good story behind it.
Everolimus is a fairly new drug. It inhibits cancer cell growth and I think it's still in clinical trials for various uses, such as tissue rejection in organ transplants and, like yours truly, for metastatic breast cancer in post-menopausal women who have already been treated with other drugs. It's so new that the Prof had to get special permission to prescribe it. The reason being, I later discovered, is because the market price is $5000 for a month supply. With the permission I pay only $6. Thank you Australian Medicare.
I've pretty much stopped looking things up on the web, except drug reactions. So, after I got home, I got into it straight away. The literature talks about using this drug as an adjuvant with Exemestane. I don't recall the Prof telling me to continue taking the Exemestane, so the first doubt is planted in my mind. Now, I joked in my last missive that 'I pick up the phone and call the doctor. He is away this week.' But this week is a different matter. He really is on the plane to London as I write this. What to do? I know, I know. Stop looking things up on the net.
But things CAN be useful on the net. I completely freaked yesterday when I overheard the Prof describing my condition as 'Stage 4' when he was getting the authorisation for prescribing the Everolimus. STAGE 4, screamed my head and I already saw my son weeping next to my grave. So, as soon as he put down the phone, I pounced on the poor Prof. 'You mean I now have Stage 4 cancer?' He had a good laugh at that. 'You have had Stage 4 for a long time, and we'll make sure you are going to have Stage 4 for a very long time to come.'
WOW! My mind was reeling. I was very upset. Luckily I am now in the habit of seeing my cancer counsellor a few hours after my appointment with the Prof, and she assured me that she sees many people who live happy and productive lives for years with Stage 4. Phew, OK. She assigns me homework, to write a dialogue in my blog reassuring my body that I will take care of it. Well, I am not sure I am ready for that yet, so that will have to wait for another blog.
First thing this morning, I gravitated towards my laptop to check out Everolimus again on the net. I am glad I did. One important fact finally sank in: nowadays Stage 4 is not generally called that, it's described as Advanced Breast Cancer. Well, of course! I have had advanced breast cancer for almost two years now. What's the big deal?
Isn't it strange how words and classifications changes the way we think? I mean I have had advanced breast cancer for years and I knew that, in my case, I could look forward to years of ups and downs, with good quality life in between, until it's my time to kick the bucket. But not yet! So, why am I suddenly terrified when I hear the words Stage 4? It's the same package in a different wrapping. Being a writer, I am a stickler for words, so from now on I will only think and say that I have 'advanced breast cancer'. Doesn't sound so bad, does it? I can live with that.
Everolimus is a fairly new drug. It inhibits cancer cell growth and I think it's still in clinical trials for various uses, such as tissue rejection in organ transplants and, like yours truly, for metastatic breast cancer in post-menopausal women who have already been treated with other drugs. It's so new that the Prof had to get special permission to prescribe it. The reason being, I later discovered, is because the market price is $5000 for a month supply. With the permission I pay only $6. Thank you Australian Medicare.
I've pretty much stopped looking things up on the web, except drug reactions. So, after I got home, I got into it straight away. The literature talks about using this drug as an adjuvant with Exemestane. I don't recall the Prof telling me to continue taking the Exemestane, so the first doubt is planted in my mind. Now, I joked in my last missive that 'I pick up the phone and call the doctor. He is away this week.' But this week is a different matter. He really is on the plane to London as I write this. What to do? I know, I know. Stop looking things up on the net.
But things CAN be useful on the net. I completely freaked yesterday when I overheard the Prof describing my condition as 'Stage 4' when he was getting the authorisation for prescribing the Everolimus. STAGE 4, screamed my head and I already saw my son weeping next to my grave. So, as soon as he put down the phone, I pounced on the poor Prof. 'You mean I now have Stage 4 cancer?' He had a good laugh at that. 'You have had Stage 4 for a long time, and we'll make sure you are going to have Stage 4 for a very long time to come.'
WOW! My mind was reeling. I was very upset. Luckily I am now in the habit of seeing my cancer counsellor a few hours after my appointment with the Prof, and she assured me that she sees many people who live happy and productive lives for years with Stage 4. Phew, OK. She assigns me homework, to write a dialogue in my blog reassuring my body that I will take care of it. Well, I am not sure I am ready for that yet, so that will have to wait for another blog.
Isn't it strange how words and classifications changes the way we think? I mean I have had advanced breast cancer for years and I knew that, in my case, I could look forward to years of ups and downs, with good quality life in between, until it's my time to kick the bucket. But not yet! So, why am I suddenly terrified when I hear the words Stage 4? It's the same package in a different wrapping. Being a writer, I am a stickler for words, so from now on I will only think and say that I have 'advanced breast cancer'. Doesn't sound so bad, does it? I can live with that.
Wednesday, September 10, 2014
Gripes
It's good to whinge now and then. Get the frustrations out and move on. I've been winging for a week now, because the pain in my joints is getting worse from the Exemestane and it's particularly bad today.
I wrote this a week ago. Probably went to sleep after taking the pain killer. Now, I want to complain about my gut. Ever since I went back on the Exemestane at the end of July, I have had bouts of really bad gut pain, or pain just under the ribs, where my hiatus hernia used to bother me, and throw up anywhere between 1-5 times. I did see the Professor once, but he didn't seem fussed. Of course it's not his gut and not his day completely washed out.
I am having one of those days today. After a fitful night of waking up to go to the bathroom, I felt very nauseated and took a Maxalon, my wonder pill against nausea. Well, well, well. Within 5 minutes I was vomiting.
I am very frustrated, as you can tell by now. I was supposed to go to a meeting this morning in my community volunteer capacity. I really wanted to go, to learn. I had to cancel. Grrrr.....
I am frustrated. I have come up with a project to help community harmony and am not amused that my body wants all this attention. We are having a mind/body disagreement at the moment. It goes like this:
Body: Hey babe, I want you to pay attention....
Me: Ignore it...
Body: OK, sorry I called you Babe, but will you listen to me?
Me: Oh, you talking to me? What's wrong.
Body: I don't know... grumble....
Me: Well, let me know when you know....
Body: You don't even care....
Me: Of course I care, but I can't do anything if you don't know what's wrong with you? You look great! You look healthy, the doctors told you all your lab tests were normal....
Body: NOT ALL!
Me: So, the cancer markers are up a bit. That's nothing to worry about.
Body: I'll show you..... (the body heaves, shoves, produces pain in unlikely places)
Me: OUCH! You don't have to do that!
Body: Yes I do. If I don't make you really sick, you don't listen to me. I am just giving you some warning signals that all's not well.
Me: OK, OK. I GOT IT. But if they can't show anything wrong in the lab, they have no idea why you keep warning me. And you are driving me crazy.
Body: Well, it's your funeral. I am warning you. PAY ATTENTION.
I pick up the phone and call the doctor. He is away this week.
OK, so there's a bit of artistic license there, but really.... I am very frustrated, but writing it down makes me feel better. Roll on next week.
I wrote this a week ago. Probably went to sleep after taking the pain killer. Now, I want to complain about my gut. Ever since I went back on the Exemestane at the end of July, I have had bouts of really bad gut pain, or pain just under the ribs, where my hiatus hernia used to bother me, and throw up anywhere between 1-5 times. I did see the Professor once, but he didn't seem fussed. Of course it's not his gut and not his day completely washed out.
I am having one of those days today. After a fitful night of waking up to go to the bathroom, I felt very nauseated and took a Maxalon, my wonder pill against nausea. Well, well, well. Within 5 minutes I was vomiting.
I am very frustrated, as you can tell by now. I was supposed to go to a meeting this morning in my community volunteer capacity. I really wanted to go, to learn. I had to cancel. Grrrr.....
I am frustrated. I have come up with a project to help community harmony and am not amused that my body wants all this attention. We are having a mind/body disagreement at the moment. It goes like this:
Body: Hey babe, I want you to pay attention....
Me: Ignore it...
Body: OK, sorry I called you Babe, but will you listen to me?
Me: Oh, you talking to me? What's wrong.
Body: I don't know... grumble....
Me: Well, let me know when you know....
Body: You don't even care....
Me: Of course I care, but I can't do anything if you don't know what's wrong with you? You look great! You look healthy, the doctors told you all your lab tests were normal....
Body: NOT ALL!
Me: So, the cancer markers are up a bit. That's nothing to worry about.
Body: I'll show you..... (the body heaves, shoves, produces pain in unlikely places)
Me: OUCH! You don't have to do that!
Body: Yes I do. If I don't make you really sick, you don't listen to me. I am just giving you some warning signals that all's not well.
Me: OK, OK. I GOT IT. But if they can't show anything wrong in the lab, they have no idea why you keep warning me. And you are driving me crazy.
Body: Well, it's your funeral. I am warning you. PAY ATTENTION.
I pick up the phone and call the doctor. He is away this week.
OK, so there's a bit of artistic license there, but really.... I am very frustrated, but writing it down makes me feel better. Roll on next week.
Monday, April 28, 2014
Doing the Limbo dance
I just posted something I wrote earlier this year. Why now? Because I forgot to post it and things have been pretty hectic since then.
Yes, things have progressed pretty well so far this year.
First of all, I am back at my temping job on a regular basis, although I have still not managed a full six hour shift. I do phone interviewing for the NSW government's Population Health Survey. I've been doing it for 10 years now. It has very flexible hours and the people are great. It's an interesting mix of students, professionals between jobs or in the throws of career change, housewives with small children and grandmothers with various health issues like me. Originally I started to work here when I was working on my never-to-be-completed documentary, just to make sure that I have some income coming in while I spend all my money on research and development and writing a sci-fi screenplay. When the documentary fell through, and the screenplay got only a 2.5 star from a Hollywood reader, I continued 'until I re-establish' my freelance writing business. Well, the proverbial sh...t hit the fan with my first cancer encounter in 2006. I stopped working and the lovely people at NSW Health received me with open arms when I returned a year and a half later. Their support and the knowledge that I can go back any time, has been really helpful in not losing my link to the real world during all my travails. So, I am back. I try to work three 5 hour shifts a week, but I don't always make it, but every bit helps.
And while we are on the job front, I also have a freelance editing assignment, so I think I can safely say that I am back in the saddle as far as work is concerned.
On the health front, I am still madly doing my brain training exercises and I am happy to report that, according to Lumosity, I am in the 99th percentile in brain performance for my age group, so it seems that my brain is back from the chemo fog for good.
On the not too optimistic front, it seems that, while the cancer is improving - meaning that the abnormal level of the cancer marker in the blood is lower - it has not gone back to normal, and my understanding now is that the doctors are not expecting it to go back to normal. I got this not from the Professor, but his stand-in during my last visit, when the Prof was incommunicado due to a knee replacement. I am going to see him in two weeks, when I will double check. In any case, the current prognosis seems to be that the Exemestane is controlling the cancer for now. If it stops doing that, then I will have to have more chemotherapy. And this on and off chemo may be for the rest of my life, which can be anyone's guess how long. As I've said somewhere before, I am told that people live like this for decades. And can I get the abdominal port out please? No! Apparently that can stay in for more than a decade also, and while it was easy to put in, it may be tricky to take out. I'll have to check that one too. Having talked with the new oncologist, I am not sure whether they want me to keep it in because it's complicated to take out, or because they expect me to have more ascites down the line. Neither possibility is very comforting.
In fact, this whole bloody cancer 'journey' (I hate that expression - a journey is a joy, this is a nightmare) is not very comfortable. Unfortunately, it looks like it isn't going away, so a couple of months ago I decided to do some things differently to be able to cope. As a result, I enrolled myself to get help for my post traumatic stress disorder that I had acquired way back when, as a child refugee and other various places. The reason being that I want to clear my head from past garbage to be able to focus on dealing with the cancer in the future. Three weeks ago I started the evaluation process with STARTTS, so I am in the best hands for both my physical and mental health. It's a pretty cool feeling, I must say, and feel I can dance the limbo for as long as it takes (remind me I said this when I start complaining again!)
Yes, things have progressed pretty well so far this year.
First of all, I am back at my temping job on a regular basis, although I have still not managed a full six hour shift. I do phone interviewing for the NSW government's Population Health Survey. I've been doing it for 10 years now. It has very flexible hours and the people are great. It's an interesting mix of students, professionals between jobs or in the throws of career change, housewives with small children and grandmothers with various health issues like me. Originally I started to work here when I was working on my never-to-be-completed documentary, just to make sure that I have some income coming in while I spend all my money on research and development and writing a sci-fi screenplay. When the documentary fell through, and the screenplay got only a 2.5 star from a Hollywood reader, I continued 'until I re-establish' my freelance writing business. Well, the proverbial sh...t hit the fan with my first cancer encounter in 2006. I stopped working and the lovely people at NSW Health received me with open arms when I returned a year and a half later. Their support and the knowledge that I can go back any time, has been really helpful in not losing my link to the real world during all my travails. So, I am back. I try to work three 5 hour shifts a week, but I don't always make it, but every bit helps.
And while we are on the job front, I also have a freelance editing assignment, so I think I can safely say that I am back in the saddle as far as work is concerned.
On the health front, I am still madly doing my brain training exercises and I am happy to report that, according to Lumosity, I am in the 99th percentile in brain performance for my age group, so it seems that my brain is back from the chemo fog for good.
On the not too optimistic front, it seems that, while the cancer is improving - meaning that the abnormal level of the cancer marker in the blood is lower - it has not gone back to normal, and my understanding now is that the doctors are not expecting it to go back to normal. I got this not from the Professor, but his stand-in during my last visit, when the Prof was incommunicado due to a knee replacement. I am going to see him in two weeks, when I will double check. In any case, the current prognosis seems to be that the Exemestane is controlling the cancer for now. If it stops doing that, then I will have to have more chemotherapy. And this on and off chemo may be for the rest of my life, which can be anyone's guess how long. As I've said somewhere before, I am told that people live like this for decades. And can I get the abdominal port out please? No! Apparently that can stay in for more than a decade also, and while it was easy to put in, it may be tricky to take out. I'll have to check that one too. Having talked with the new oncologist, I am not sure whether they want me to keep it in because it's complicated to take out, or because they expect me to have more ascites down the line. Neither possibility is very comforting.
In fact, this whole bloody cancer 'journey' (I hate that expression - a journey is a joy, this is a nightmare) is not very comfortable. Unfortunately, it looks like it isn't going away, so a couple of months ago I decided to do some things differently to be able to cope. As a result, I enrolled myself to get help for my post traumatic stress disorder that I had acquired way back when, as a child refugee and other various places. The reason being that I want to clear my head from past garbage to be able to focus on dealing with the cancer in the future. Three weeks ago I started the evaluation process with STARTTS, so I am in the best hands for both my physical and mental health. It's a pretty cool feeling, I must say, and feel I can dance the limbo for as long as it takes (remind me I said this when I start complaining again!)
Saturday, February 15, 2014
Back in the swim
January is almost over, but I still feel the negative pull of last year. Today I attended the funeral of Adrianus van As, a venerable gentleman of 94 years of age. One can say he had a full life and it was time to go, but Adrianus was one of those few amazing people of principle, who stood up for what he felt was right under the worst period of Holland's history in World War II, and he saved hundreds of Jews from being deported to their deaths. I always feel that people like Adrianus should live forever, to guide us in doing the right thing. As his son, the pastor who officiated at his funeral, said,however, 'besides being a hero, Adrianus was a human being'. I guess. So, human beings must die. Vale Adrianus.
I always felt that my brother Stephan would live forever – at least he would outlive me – even though he was 10 years older than I. He was no hero, just a very clever man, larger than life, who was born into the wrong family and had a very hard childhood that marred him for life. A very human being. Stephan died on 10 December, 2013, just 5 days shy of his 80th birthday. He lived in Florida, so I was at his funeral via Skype, as I also whispered in his ear on Skype on the day he died. Today, attending Adrianuses funeral, I wept almost uncontrollably and felt embarassed, because I realised I was not crying for the deceased, whom I have had the privilege to get to know through my volunteer work, but for my beloved brother, whom I idolised as a child, but with whom I've had a difficult relationship for most of my adult life.
After Adrianus' funeral, I went for orientation in my temping job, which will restart next week. I have not worked in over a year because of my illness, so today was a major advance to recovery. I lasted the three hours and look forward to getting on with my life. The day was a poignant mixture of farewell and hello future. A day to ponder.
Mind you, as I look forward to finally earning some money, I have to say that I am not out of the cancer woods yet. I saw the Professor last week. He told me that my blood test was NORMAL, which means that the Exemestane treatment is working: i.e. it is mopping up the straggling cancer cells. However, he declined to take out the 'port', which bothers me when I move the wrong way in the gym or sit up for long periods. To me that means he is expecting perhaps that the ascitis may return.
Surprisingly, I was not elated at the news that my blood test was normal. It was very strange. It was almost a let down. I was very upset about that. Luckily, on the way home I bumped into Angela, my amazing counsellor. She saw me the next day and explained that I am simply exhausted and, because of that, the good news seems like a downer. It's normal, she said. Evidently one is so geared up to coping with the negative that good news is perceived as the opposite. Or something like that.
My downer did not last long. I am over the moon that I can get back into life. I have been going to the gym a couple of times a week and am up to swimming laps - so far made it to 500 metres. I used to be able to do a mile (1.6km) in half hour, so I still have a long way to go. And, for the past three weeks I've hardly used the walking stick. Woohoo!
ps. I just found this entry that I didn't publish. So, I am publishing it now. Makes sense in April.....
I always felt that my brother Stephan would live forever – at least he would outlive me – even though he was 10 years older than I. He was no hero, just a very clever man, larger than life, who was born into the wrong family and had a very hard childhood that marred him for life. A very human being. Stephan died on 10 December, 2013, just 5 days shy of his 80th birthday. He lived in Florida, so I was at his funeral via Skype, as I also whispered in his ear on Skype on the day he died. Today, attending Adrianuses funeral, I wept almost uncontrollably and felt embarassed, because I realised I was not crying for the deceased, whom I have had the privilege to get to know through my volunteer work, but for my beloved brother, whom I idolised as a child, but with whom I've had a difficult relationship for most of my adult life.
After Adrianus' funeral, I went for orientation in my temping job, which will restart next week. I have not worked in over a year because of my illness, so today was a major advance to recovery. I lasted the three hours and look forward to getting on with my life. The day was a poignant mixture of farewell and hello future. A day to ponder.
Mind you, as I look forward to finally earning some money, I have to say that I am not out of the cancer woods yet. I saw the Professor last week. He told me that my blood test was NORMAL, which means that the Exemestane treatment is working: i.e. it is mopping up the straggling cancer cells. However, he declined to take out the 'port', which bothers me when I move the wrong way in the gym or sit up for long periods. To me that means he is expecting perhaps that the ascitis may return.
Surprisingly, I was not elated at the news that my blood test was normal. It was very strange. It was almost a let down. I was very upset about that. Luckily, on the way home I bumped into Angela, my amazing counsellor. She saw me the next day and explained that I am simply exhausted and, because of that, the good news seems like a downer. It's normal, she said. Evidently one is so geared up to coping with the negative that good news is perceived as the opposite. Or something like that.
My downer did not last long. I am over the moon that I can get back into life. I have been going to the gym a couple of times a week and am up to swimming laps - so far made it to 500 metres. I used to be able to do a mile (1.6km) in half hour, so I still have a long way to go. And, for the past three weeks I've hardly used the walking stick. Woohoo!
ps. I just found this entry that I didn't publish. So, I am publishing it now. Makes sense in April.....
Saturday, August 3, 2013
A Short Respite
No chemo for a month! That's what the Professor said. I thought he meant he wants to see if the anti-estrogen pill will do the trick and I won't need need more chemo.
NO WAY!
My treatment is done in a team. That means that no matter whom I see, they write up my condition and inform every other member of the team. Initially it was the surgeon, medical oncologist, radiation oncologist and GP (my family doctor). This group has now expanded to include my cancer counsellor, the other Professor who saw me in hospital a few months ago, and someone else, whom I don't even remember. The reason I know all this is because I get a copy of every letter any of them write to my GP. I like it. It makes me feel involved in my treatment. On the other hand, sometimes I think it would be better not to know everything. Now is one of those times.
Ever since Tuesday, when I saw the Professor, I told my friends that the treatment is working and possibly no more chemo. My head cleared, I have a new writing project and I was over the moon with renewed optimism. Then came the letter.
Well, the reality is that I am better. The ascites is almost gone, I look healthy (even though my hair is getting quite thin - but still not noticeably) and I can even walk without a cane for a little while. But my treatment continues to be Exemestane and the three chemo poisons. So, that means I am not out of the woods yet. The saga continues.
In the meantime, the latest issue is my eyesight. For the past month, if not longer, I noticed that my eyesight is deteriorating. The letters on my laptop are becoming blurred and I have to make them larger to read comfortably. Worse still, my glasses are multifocal and sometimes the lines on the page seem to split at an angle. Yesterday I drove to the next suburb and I experienced this split when I was driving. What is going on? This is intolerable.
I suspect this is a side effect of either the chemo or the Exestemane, or both. So, come Monday, I am going to the eye hospital emergency to get to the bottom of it all. They are wonderful. A number of years ago I discovered contact lenses. I felt liberated. No more glass bumps on my nose, no more dirty glasses. Well, the freedom didn't last long. One day I woke up with my right eye feeling like it had sand in it. Someone suggested I go to the Sydney Eye Hospital. I didn't even know such a thing existed. It was quite a long wait, but I think they saved my eye, as it turned out to be a very bad infection from the contact lens. Ever since then, I always go there whenever I feel I have a problem. Monday I'll queue up again and wait my turn. I am sure they will have an answer.
And, on 28 August, when I see the Professor again, I am pretty sure I'll be looking at a new chemo cycle. Ah well. I have 25 days to get my strength back and get stuck into my writing. I have an apppointment with the trainer at the gym on Tuesday. I hate the gym, but they have a wonderful swimming pool. One can't have everything, I suppose.
NO WAY!
My treatment is done in a team. That means that no matter whom I see, they write up my condition and inform every other member of the team. Initially it was the surgeon, medical oncologist, radiation oncologist and GP (my family doctor). This group has now expanded to include my cancer counsellor, the other Professor who saw me in hospital a few months ago, and someone else, whom I don't even remember. The reason I know all this is because I get a copy of every letter any of them write to my GP. I like it. It makes me feel involved in my treatment. On the other hand, sometimes I think it would be better not to know everything. Now is one of those times.
Ever since Tuesday, when I saw the Professor, I told my friends that the treatment is working and possibly no more chemo. My head cleared, I have a new writing project and I was over the moon with renewed optimism. Then came the letter.
Well, the reality is that I am better. The ascites is almost gone, I look healthy (even though my hair is getting quite thin - but still not noticeably) and I can even walk without a cane for a little while. But my treatment continues to be Exemestane and the three chemo poisons. So, that means I am not out of the woods yet. The saga continues.
In the meantime, the latest issue is my eyesight. For the past month, if not longer, I noticed that my eyesight is deteriorating. The letters on my laptop are becoming blurred and I have to make them larger to read comfortably. Worse still, my glasses are multifocal and sometimes the lines on the page seem to split at an angle. Yesterday I drove to the next suburb and I experienced this split when I was driving. What is going on? This is intolerable.
I suspect this is a side effect of either the chemo or the Exestemane, or both. So, come Monday, I am going to the eye hospital emergency to get to the bottom of it all. They are wonderful. A number of years ago I discovered contact lenses. I felt liberated. No more glass bumps on my nose, no more dirty glasses. Well, the freedom didn't last long. One day I woke up with my right eye feeling like it had sand in it. Someone suggested I go to the Sydney Eye Hospital. I didn't even know such a thing existed. It was quite a long wait, but I think they saved my eye, as it turned out to be a very bad infection from the contact lens. Ever since then, I always go there whenever I feel I have a problem. Monday I'll queue up again and wait my turn. I am sure they will have an answer.
And, on 28 August, when I see the Professor again, I am pretty sure I'll be looking at a new chemo cycle. Ah well. I have 25 days to get my strength back and get stuck into my writing. I have an apppointment with the trainer at the gym on Tuesday. I hate the gym, but they have a wonderful swimming pool. One can't have everything, I suppose.
Thursday, August 1, 2013
Those tingling fingers
A couple of weeks ago I was tapping on my iPad as usual and for some reason the letters got all jumbled up. I should say, they seemed more jumbled up than usual. I am a touch typist and I don't usually make too many mistakes. This time I did and it was very strange. I took a good look at my fingers and realised that there was something wrong with the tip of every one of them. They were tingling and when I touched something, it felt different from what I expected. There was a dullness to the touch.
Neuropathy!
I was horrified. Isn't it enough that I have neuropathy in my feet from the chemo seven years ago, now I have it in my fingers as well? At first I felt very sorry for myself, but then I started to wonder what could give me this new unwelcome surprise? Well, there were only a few culprits - methotrexate, 5FU, cyclophosphamide or the exemestane.
I immediately ruled out the exemestane, but then told myself: 'hang on, let's take a look at the possible side effects.' So, I did. Well, that doesn't seem to be a side effect, but vision problems are. Aha! That's another problem that's crept up on me. Lately, my glasses have been bothering me. I have trouble focusing when I work on the computer. It all looks fuzzy. When I told the professor, he asked if I saw double. No, I said, it's more like an angle split than double. Weird. I thought it was the frame that was getting out of shape and went to the optometrist twice already. She suggested I get a cheap reading glass from the chemist to use for working on the computer. Well, it's better, but I think I better have the eyes examined properly.
OK, back to neuropathy.
I just found an article about this condition and learned that it's called 'chemotherapy induced peripheral neuropathy, or CIPN. Unfortunately it doesn't mention any of my chemo poisons, but it talks about Taxol, which is what I had seven years ago and thought was the cause of the problem with my feet. Nice to have confirmation.
So, let's dig further. What about cyclophosphamide? No, it causes hair loss. My hair has gotten thinner and there are small bald patches on my scalp, but you wouldn't know looking at me, so moving right along.....
What about 5FU?
No. So, there's only methotrexate left.
Well, that doesn't seem to be that either.
What did I learn from this exercise? Probably that it's best not to trust my own internet research and I better continue with keeping communication lines open with the Professor. I usually compile a long list of complaints, so I will continue to stick to that practice. Saves much time and mental frustration.
Neuropathy!
I was horrified. Isn't it enough that I have neuropathy in my feet from the chemo seven years ago, now I have it in my fingers as well? At first I felt very sorry for myself, but then I started to wonder what could give me this new unwelcome surprise? Well, there were only a few culprits - methotrexate, 5FU, cyclophosphamide or the exemestane.
I immediately ruled out the exemestane, but then told myself: 'hang on, let's take a look at the possible side effects.' So, I did. Well, that doesn't seem to be a side effect, but vision problems are. Aha! That's another problem that's crept up on me. Lately, my glasses have been bothering me. I have trouble focusing when I work on the computer. It all looks fuzzy. When I told the professor, he asked if I saw double. No, I said, it's more like an angle split than double. Weird. I thought it was the frame that was getting out of shape and went to the optometrist twice already. She suggested I get a cheap reading glass from the chemist to use for working on the computer. Well, it's better, but I think I better have the eyes examined properly.
OK, back to neuropathy.
I just found an article about this condition and learned that it's called 'chemotherapy induced peripheral neuropathy, or CIPN. Unfortunately it doesn't mention any of my chemo poisons, but it talks about Taxol, which is what I had seven years ago and thought was the cause of the problem with my feet. Nice to have confirmation.
So, let's dig further. What about cyclophosphamide? No, it causes hair loss. My hair has gotten thinner and there are small bald patches on my scalp, but you wouldn't know looking at me, so moving right along.....
What about 5FU?
No. So, there's only methotrexate left.
Well, that doesn't seem to be that either.
What did I learn from this exercise? Probably that it's best not to trust my own internet research and I better continue with keeping communication lines open with the Professor. I usually compile a long list of complaints, so I will continue to stick to that practice. Saves much time and mental frustration.
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!
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