Yesterday marked the 7th month mark from the fateful day when I walked into work and realised that I was sick. Since I haven't provided an update for a while I thought I would give a summary of how I am progressing.
Hairy Cell Leukemia
Based on my last bone marrow biopsy in July the docs detected I still unfortunately had 20% cancer. So at the end of this month I have another bone marrow biopsy booked to see if the cancer is still there. Unfortunately we believe it still will be because cancer isn't a good friend who leaves on it's own accord.
Obviously I'm not looking forward to the biopsy but I am looking forward to the drug they give you prior to the test. You are semi-sedated with the drug and after the operation I usually fall asleep and wake up an hour later feeling like I have had the best sleep ever.
I'm sure I couldn't be a heroin addict but I could be a bone marrow drug addict. Luckily I don't know the drugs name. I imagine it's a slippery slope from a working professional to selling my body on the streets to fund my bone marrow drug addiction.
If the test results show I still have cancer then we will start the second round of treatment. Instead of Chemo we will be using another drug called Mabthera. Mabthera is a more targeted treatment which shouldn't kill as many cells as Chemo does. In theory this means I shouldn't experience zero white blood cells like I did after the last treatment.
Infections
Based on my last PET scan (a PET scan, contrary to popular beliefs produces an 3d image of the body. In my case to measure the levels of infection..... not the number of pets I have) my body still showed a potential small level of infections in my body. My doctors couldn't say for certain if it was infections but figured it wasn't worth the risk of stopping antibiotics so my daily drug routine continues.
On the plus side I passed the Pharmaceuticals Benefit Scheme (PBS) safety net. For those who don't know the Australian government have a scheme which certain medications are subsidised by the government, these drugs are on the PBS. All medications that I am prescribed are on the PBS which means I am buying them at a discount. The safety net helps to further reduce the cost of medication once you spend too much in a year. For me once I spent over $1,363.30 then all medications I purchase after that is only costing me $5.80 per prescription.
Ileostomy
Unfortunately business as usual in regards to my Ostomy surgery. I still have a wound at the surgical site which the wound care gets changed weekly. When that does heal I'll have an interesting looking scar from the mid chest all the way down to just above the groin.
My doctor doesn't want to attempt the reversal until the cancer has gone so it looks like I have this thing until at least Feb / Mar next year.
Voice and Physio
Every Friday I have speech therapy and physio which I really enjoy. Speech therapy has involved exercises to get me using my voice properly and not straining my voice box. This usually involves warming up the voice with different tones, for example humming, saying 'eeeee', saving 'aaaaaaa'.
One of my big problems is in loud environments (pubs, restaurants) it is really difficult for me to communicate since my voice has no strength. So as an exercise, Vanessa (my speech therapist) had me yelling words out at the top of my lungs. To make it seem less weird she would yell the word then I had to yell it out as well. Her choice of words sometimes I question. After she yelled out "HELP" and "GO AWAY" I was expecting some of the other staff to rush into the room and tackle me to the ground.
Physio is an hour long group class once a week. I needed this because unfortunately when I started I couldn't complete 1 push-up on my knees. My physio Aaron has me doing a lot of upper body weights on a cable machine and with free weights (cable machine pictured below)
I focus on the lower body workout out of physio by riding my bike and when motivated doing the 1,000 steps....... very very slowly.
For those who are interested below is my workout program
Hairy Cell Leukemia
Based on my last bone marrow biopsy in July the docs detected I still unfortunately had 20% cancer. So at the end of this month I have another bone marrow biopsy booked to see if the cancer is still there. Unfortunately we believe it still will be because cancer isn't a good friend who leaves on it's own accord.
Obviously I'm not looking forward to the biopsy but I am looking forward to the drug they give you prior to the test. You are semi-sedated with the drug and after the operation I usually fall asleep and wake up an hour later feeling like I have had the best sleep ever.
I'm sure I couldn't be a heroin addict but I could be a bone marrow drug addict. Luckily I don't know the drugs name. I imagine it's a slippery slope from a working professional to selling my body on the streets to fund my bone marrow drug addiction.
If the test results show I still have cancer then we will start the second round of treatment. Instead of Chemo we will be using another drug called Mabthera. Mabthera is a more targeted treatment which shouldn't kill as many cells as Chemo does. In theory this means I shouldn't experience zero white blood cells like I did after the last treatment.
Infections
Based on my last PET scan (a PET scan, contrary to popular beliefs produces an 3d image of the body. In my case to measure the levels of infection..... not the number of pets I have) my body still showed a potential small level of infections in my body. My doctors couldn't say for certain if it was infections but figured it wasn't worth the risk of stopping antibiotics so my daily drug routine continues.
On the plus side I passed the Pharmaceuticals Benefit Scheme (PBS) safety net. For those who don't know the Australian government have a scheme which certain medications are subsidised by the government, these drugs are on the PBS. All medications that I am prescribed are on the PBS which means I am buying them at a discount. The safety net helps to further reduce the cost of medication once you spend too much in a year. For me once I spent over $1,363.30 then all medications I purchase after that is only costing me $5.80 per prescription.
Ileostomy
Unfortunately business as usual in regards to my Ostomy surgery. I still have a wound at the surgical site which the wound care gets changed weekly. When that does heal I'll have an interesting looking scar from the mid chest all the way down to just above the groin.
My doctor doesn't want to attempt the reversal until the cancer has gone so it looks like I have this thing until at least Feb / Mar next year.
Voice and Physio
Every Friday I have speech therapy and physio which I really enjoy. Speech therapy has involved exercises to get me using my voice properly and not straining my voice box. This usually involves warming up the voice with different tones, for example humming, saying 'eeeee', saving 'aaaaaaa'.
One of my big problems is in loud environments (pubs, restaurants) it is really difficult for me to communicate since my voice has no strength. So as an exercise, Vanessa (my speech therapist) had me yelling words out at the top of my lungs. To make it seem less weird she would yell the word then I had to yell it out as well. Her choice of words sometimes I question. After she yelled out "HELP" and "GO AWAY" I was expecting some of the other staff to rush into the room and tackle me to the ground.
Physio is an hour long group class once a week. I needed this because unfortunately when I started I couldn't complete 1 push-up on my knees. My physio Aaron has me doing a lot of upper body weights on a cable machine and with free weights (cable machine pictured below)
For those who are interested below is my workout program
- Cable chest press
- Cable Tricep extension
- Seated Row
- Barbell pull down
- Bicep curls
- Cable flys
- Deadlifts (using the cable machine)
- If I have time I add in lunges
Physio by far is the best appointment I have, leaving after an hour and having sore muscles is a great feeling. I can now complete 3 push-ups on my knees, in no time I'll be able to complete an hour core workout.... well maybe not but hopefully sometime soon.
Life in Singapore
Unfortunately my apartment in Singapore has been packed up and is in the process of being shipped back to Australia. I can't wait for the day when I can get back to Singapore to visit. I miss the friends I have, being able to buy dinner for $3, Dragon boating, OC and to some extent beefcake (well the dinner after beefcake with friends was the best).
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