Well its been a month and finally my pathology has made it from one lab in Melbourne to another lab in Melbourne. Woo-friggin-Hoo!
I can't believe the delay. I still don't know if I am eligible for the trial. So needless to say I have not had any treatment yet either. My tumour feels like its getting bigger and the pain is relentless.
I am having a whinge I know but I am so over this waiting thing....
Wednesday, 31 March 2010
Tuesday, 9 March 2010
Patience
I've never considered myself to be a patient person. I'm much more of an instant gratification type of gal. Yet the entire past decade of my life seems to be revolving around waiting. Waiting for medical procedures to start - to finish - to be successful.
I have signed up for a drug trial. The drug company is in the US so my pathology was sent over last week and we are waiting to find if I am eligible. As I understand it the drug targets a certain mutant gene found in fast growing melanoma tumours and (they hope) turns the gene off, so the tumours stop growing, or at least stop growing so fast. Previous trials have shown that some tumours have reduced in size by around 30%. A lovely old Italian man sitting next to DH at the cancer hospital told us that he participated in the last trial. He had been given 3 months to live but now his tumour is 75% smaller than when he started.
Obviously, I really want to get on this trial.
The first hurdle is eligibility. It's a strange new world when I am hoping that my cancer contains a mutant gene that makes it grow faster! The oncologist is 80% sure that it will.
The second hurdle is that the trial is randomised. This means that a computer program on a computer somewhere in the States randomly chooses who gets to try the new drug and who gets the standard chemo treatment. I have been placed on a priority list to start treatment asap, but there is no compassionate bias.
I am trying to think positively. The oncologist thinks another trial will start later in the year if I don't get the new drug on this one. And anyway, maybe the chemo will be just as effective, and there are other new drugs that are also coming on to the market - such as immune system boosters - that are having good results too.
My fingers are crossed and many prayers are being sent off into the ether.
I have signed up for a drug trial. The drug company is in the US so my pathology was sent over last week and we are waiting to find if I am eligible. As I understand it the drug targets a certain mutant gene found in fast growing melanoma tumours and (they hope) turns the gene off, so the tumours stop growing, or at least stop growing so fast. Previous trials have shown that some tumours have reduced in size by around 30%. A lovely old Italian man sitting next to DH at the cancer hospital told us that he participated in the last trial. He had been given 3 months to live but now his tumour is 75% smaller than when he started.
Obviously, I really want to get on this trial.
The first hurdle is eligibility. It's a strange new world when I am hoping that my cancer contains a mutant gene that makes it grow faster! The oncologist is 80% sure that it will.
The second hurdle is that the trial is randomised. This means that a computer program on a computer somewhere in the States randomly chooses who gets to try the new drug and who gets the standard chemo treatment. I have been placed on a priority list to start treatment asap, but there is no compassionate bias.
I am trying to think positively. The oncologist thinks another trial will start later in the year if I don't get the new drug on this one. And anyway, maybe the chemo will be just as effective, and there are other new drugs that are also coming on to the market - such as immune system boosters - that are having good results too.
My fingers are crossed and many prayers are being sent off into the ether.
Thursday, 18 February 2010
Overwhelmed
DH and I are overwhelmed my your love and support. DH has tried many times but not been able to read all your comments, so moved by the kindness of strangers.
A huge thank you to my gorgeous bloggy mates Eden, Stacie and Mrs Mask for recruiting extra prayers. We are going to need all the help we can get for this new fight.
My uncle visited today. His 40yo stepson was diagnosed late last year with Stage 4 cancer of the rectum with spots on the liver as well. He's been having chemo for about a month now and the main tumor has reduced from 75mm (same size as my lymph node tumor) to less than 7mm and the liver spots have dramatically reduced as well.
We have been crying every day but we have hope. Hope has always and will always be with us.
I am just anxious to start treatment and get the fight on.
A huge thank you to my gorgeous bloggy mates Eden, Stacie and Mrs Mask for recruiting extra prayers. We are going to need all the help we can get for this new fight.
My uncle visited today. His 40yo stepson was diagnosed late last year with Stage 4 cancer of the rectum with spots on the liver as well. He's been having chemo for about a month now and the main tumor has reduced from 75mm (same size as my lymph node tumor) to less than 7mm and the liver spots have dramatically reduced as well.
We have been crying every day but we have hope. Hope has always and will always be with us.
I am just anxious to start treatment and get the fight on.
Saturday, 13 February 2010
And it just keeps getting better
The past few days have been horrid.
I had surgery on Thursday to remove some suspect skin lesions. One on my back, one on my thigh and another on the sole of my foot. All pathology came back as benign. Obviously the one on my foot has me laid up for a few days. My parents are here again but this time has really bothered me because I am an invalid. Kayla has a cold and has been crying a lot more than usual, and I can't get up to her, I can't carry her and I can't bath her. I hate it so much. It seems too much like a window to the future....
The Professor finally made contact about my latest scan results. The cancer has spread to my bones - it's in my shoulder, thigh, hip, pelvis and I think a few spots in my back. He said my prognosis is not good - about 8-9 months - but they are trialling a new drug which seems to have some promise. I'm not sure what this means but I will try anything, do anything to gain even just a little more time with my precious family.
My heart is breaking for DH. Imagine what it would be like to be told the person you love may only live another 9 months (unfortunately at least a couple of you know this feeling already and that breaks my heart too.). We haven't told anyone else yet and I don't know if we will. I have so many thoughts and feelings running rampant in my head but truly don't know what else to say right now....
I had surgery on Thursday to remove some suspect skin lesions. One on my back, one on my thigh and another on the sole of my foot. All pathology came back as benign. Obviously the one on my foot has me laid up for a few days. My parents are here again but this time has really bothered me because I am an invalid. Kayla has a cold and has been crying a lot more than usual, and I can't get up to her, I can't carry her and I can't bath her. I hate it so much. It seems too much like a window to the future....
The Professor finally made contact about my latest scan results. The cancer has spread to my bones - it's in my shoulder, thigh, hip, pelvis and I think a few spots in my back. He said my prognosis is not good - about 8-9 months - but they are trialling a new drug which seems to have some promise. I'm not sure what this means but I will try anything, do anything to gain even just a little more time with my precious family.
My heart is breaking for DH. Imagine what it would be like to be told the person you love may only live another 9 months (unfortunately at least a couple of you know this feeling already and that breaks my heart too.). We haven't told anyone else yet and I don't know if we will. I have so many thoughts and feelings running rampant in my head but truly don't know what else to say right now....
Friday, 5 February 2010
Liver Spots
I thought liver spots were those brown marks old people get on the backs of their hands. A CT scan yesterday revealed spots on my liver. Not good news apparently. According to the report the lymph nodes in my groin are also enlarged but the Dr did not mention this. Good news is that there is no sign of cancer in my lungs or brain. Possibly something sinister hanging out near my left kidney but other organs look good.
The breast surgeon has been awesome. Since the diagnosis I have spoken to her or her secretary every day. She has organised an absolute barrage of tests for this week and even an appointment with one of the Melanoma experts at the local cancer hospital for today. So hopefully they will move just as quickly and aggressively with treatment.
On a much lighter note.... Kayla had her half birthday yesterday. She is just so happy and gorgeous and is loving spending all this extra time with Grandma and Grandpa.
The breast surgeon has been awesome. Since the diagnosis I have spoken to her or her secretary every day. She has organised an absolute barrage of tests for this week and even an appointment with one of the Melanoma experts at the local cancer hospital for today. So hopefully they will move just as quickly and aggressively with treatment.
On a much lighter note.... Kayla had her half birthday yesterday. She is just so happy and gorgeous and is loving spending all this extra time with Grandma and Grandpa.
Tuesday, 2 February 2010
Cancer Schmancer
Hello. My name is Louise.
I have cancer.
Melanoma.
Fuck it.
I noticed some swelling in my armpit about 3 weeks ago but didn't think much of it. I knew I had a breast screen appointment on January 27th so I thought I'd mention it then. By then it felt like a hard lump, maybe a bit smaller than a golf ball. The breast specialist scheduled another ultrasound and a needle biopsy of my lymph nodes for February 9th. Two days later the lymph node(s) was the size of a tennis ball and a huge lump had appeared under my collar bone. I rang the specialist again and she did the needle biopsy herself yesterday morning. The results came back as "Atypical", so I had a core biopsy yesterday afternoon to get a bigger tissue sample. She rang with the results today. Cancer. Melanoma. The pathologist checked twice.
We don't have a lot of information yet, but par for the course with me there is a kicker. The kicker is that the cancer in my lymph nodes is a secondary cancer and we don't know where the primary cancer is. And therefore how advanced it is.
I am booked in for some scary bloody radioactive body scan on Friday to help find the sucker. Then hopefully next week I will have surgery again to cut it out and remove the lymph nodes.
I can't get the image of ugly black cancer cells multiplying in my armpit out of my head.
The speed at which this thing appeared scares the fuck out of me.
The fact that I have a six month old daughter scares the fuck out of me.
I want to be there when she gets married, I want to be there when she has a baby of her own.
Infertility kicked my arse but did not beat me. Cancer will not beat me.
I have cancer.
Melanoma.
Fuck it.
I noticed some swelling in my armpit about 3 weeks ago but didn't think much of it. I knew I had a breast screen appointment on January 27th so I thought I'd mention it then. By then it felt like a hard lump, maybe a bit smaller than a golf ball. The breast specialist scheduled another ultrasound and a needle biopsy of my lymph nodes for February 9th. Two days later the lymph node(s) was the size of a tennis ball and a huge lump had appeared under my collar bone. I rang the specialist again and she did the needle biopsy herself yesterday morning. The results came back as "Atypical", so I had a core biopsy yesterday afternoon to get a bigger tissue sample. She rang with the results today. Cancer. Melanoma. The pathologist checked twice.
We don't have a lot of information yet, but par for the course with me there is a kicker. The kicker is that the cancer in my lymph nodes is a secondary cancer and we don't know where the primary cancer is. And therefore how advanced it is.
I am booked in for some scary bloody radioactive body scan on Friday to help find the sucker. Then hopefully next week I will have surgery again to cut it out and remove the lymph nodes.
I can't get the image of ugly black cancer cells multiplying in my armpit out of my head.
The speed at which this thing appeared scares the fuck out of me.
The fact that I have a six month old daughter scares the fuck out of me.
I want to be there when she gets married, I want to be there when she has a baby of her own.
Infertility kicked my arse but did not beat me. Cancer will not beat me.
Wednesday, 13 January 2010
Same Same but Different
The days are flying by so fast. Amazing considering I seem to do the same things all day every day and always end the day thinking "damn I still didn't get to do the ironing"... or wash the floor... or finish decorating bub's room.... A good day sees me showered before DH gets home, the laundry hamper closer to empty than full and the breakfast dishes washed before dinner. These are now the markers of my day - not how many invoices I sent out or how much profit we made last week.
But just when I think I have some kind of a routine happening, Kayla does something to remind me that it is she who is in charge - thank you very much. This week its rolling, and flipping on to her tummy - not so good at bringing her hands up under herself yet, so there's also a lot of flailing legs and mashing her face into the rug. I'd been dragging my feet with the whole moving her out of our room and into her cot thing, when she decided to force the issue and start rolling around in the cradle. Last night was the first night she's slept in her cot. She did much better than I did. I had the baby monitor right beside me but my heart pounded for the first hour because I couldn't hear her breathing which obviously meant she wasn't. I made myself wait for an hour because I knew I was being ridiculous (which is surely ridiculous in itself!).
Another new hobby of hers is talking. She's also been pretty chatty but now she's found a whole bunch of new sounds to play with. I love waking up in the morning listening to her "sing". She has such a such gorgeous girly little voice and she just sounds so happy nattering away to herself. I hope she can sing, a talent I totally missed out on, and play a musical instrument like her dad. Ju.lie Andr.ews was being interviewed on tv this morning and they kept playing footage of her singing "the hills are alive" and Kayla seemed to be listening and smiling, I said "that lady can sing almost as good as mummy", she stopped smiling and turned to me with a very blank look. Ouch!
But just when I think I have some kind of a routine happening, Kayla does something to remind me that it is she who is in charge - thank you very much. This week its rolling, and flipping on to her tummy - not so good at bringing her hands up under herself yet, so there's also a lot of flailing legs and mashing her face into the rug. I'd been dragging my feet with the whole moving her out of our room and into her cot thing, when she decided to force the issue and start rolling around in the cradle. Last night was the first night she's slept in her cot. She did much better than I did. I had the baby monitor right beside me but my heart pounded for the first hour because I couldn't hear her breathing which obviously meant she wasn't. I made myself wait for an hour because I knew I was being ridiculous (which is surely ridiculous in itself!).
Another new hobby of hers is talking. She's also been pretty chatty but now she's found a whole bunch of new sounds to play with. I love waking up in the morning listening to her "sing". She has such a such gorgeous girly little voice and she just sounds so happy nattering away to herself. I hope she can sing, a talent I totally missed out on, and play a musical instrument like her dad. Ju.lie Andr.ews was being interviewed on tv this morning and they kept playing footage of her singing "the hills are alive" and Kayla seemed to be listening and smiling, I said "that lady can sing almost as good as mummy", she stopped smiling and turned to me with a very blank look. Ouch!
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