In February I had my specialist appointment again. Here are my numbers:
Weight – 75.1 kg/165lbs
Blood pressure: 120/50
Immunoglobulin G (igG) 40.1 (was 38.8 last Nov)
Beta 2 microglobulin 39.9 (was 34.8 last Nov)
Hemoglobin 121
White blood cells 2.0
Blood platelets 192

I will see my specialist again in 3 months. I won’t be going back on cancer drugs at this time – been off Revlimid since Dec 2009 when I contracted TTP and a stroke, although my levels are high. I also don’t have any eye problems related to my stroke or due to my glaucoma scare.

Staying positive.

Slit Lamp Biomicroscope I used

Last week I had my regular appointment with my glaucoma (eye) specialist. Sometimes, it feels a bit surreal, the number of different cancer and eye specialists I’ve seen seen 2006 as well as how fortunate I am that I’m not blind today. Everyday I’m feel thankful that I’m living with cancer in Vancouver and not another city, the specialists here are all world-class. Each time I step into his office, I reflect back on how he has been my specialist since Spring 2006 when it was feared that would contact glaucoma while in the early stages of my cancer treatment. At the time, I was receiving treatment to increase my stem cell counts leading up to my bone marrow transplant, had begun taking Dexamethasone, a high dose steroid, and I had begun Pamidronate treatment to help keep my bones strong because of Multiple Myeloma.

A rare side effect is vision problems and shortly after beginning treatment I suffered headaches and ocular inflammation where looking at my cell phone severely hurt my eyes, I couldn’t go outside without wearing sunglasses, and street lamps had a circular glow around them. I went to the UBC ER and then Student Health the next day resulting in my specialist appointment. At the beginning I was quite scared I would go blind because my eye pressure levels were very high due to the Dexamethasone and Pamidronate. I was taken off the Pamidronate but remained on the Dexamethasone and was put on eye drops to help reduce my eye pressure and counteract the steroids effects.

Each time I visit my glaucoma specialist, my eye pressure levels are checked to ensure that they are not high. In Dec 2009 I suffered a stroke in my visual field area due to TTP, I received an emergency appointment from my eye specialist as I had had headaches, everything was in a white hazy for short periods of time the previous week, and I had a numb mouth for short periods of time. When he checked my eye pressure, they hadn’t changed so he sent me upstairs for a field test which I passed out during. I was rushed to ER where I received an MRI and various blood tests that showed I had TTP (3-5 cases a year in British Columbia) which had also triggered my stroke. 12 days later I was released from hospital. At the time my camera was broken so I didn’t take pictures of my stay in the hospital. If interested, you can read a more in-depth analysis of my health in my blogpost where I announced my cancer.

So fast forward to last week. I arrived about an hour early as I first wanted to confirm my Feb appointment at the hospital with my cancer specialist. After that was done, I spoke with the receptionist and was shown inside about 30 minutes early – pretty cool. After an eye chart test, my eye pressure was checked and found to be 15 which is normal for me (14 last June). Afterwards my eyes were checked using a Slit Lamp Biomicroscope to ensure that are not abnormalities in my retina.

The really good news was from the results of my visual field test last September. I’ve had a variety of visual field tests since 2006 to monitor for glaucoma. However, with my stroke in Dec 09, it was important to ensure that the damage to my visual cortex wasn’t permanent. After my stroke, I had vision problems where looking at someone’s face would show their left eye missing. This is because the right side of my visual cortex was the area affected by the stroke.

Fortunately, the visual field test showed that the damage has pretty much been reversed – Happy Dance. After hearing about US Senator Mark Kirk suffering a stroke on Monday that may result in permanent physical damage, I feel unbelievably blessed.

Focused on staying positive each day regardless of the daily challenges I face.

Last week I had my appointment with my cancer specialist. You can read up on my cancer history here. I think I’ve been seeing him every three months since I was taken off cancer drugs in Dec 2009 due to my TTP and stroke in my Occipital lobe (vision). I used to get really nervous the week leading up to my appointment as I would be afraid of bad news because I don’t want to ever go on cancer drugs again. Cancer drugs really takes alot out of you and some days I felt so fatigued that leaving my place was a non-starter. Now I am fairly relaxed and just focus positive energy on my cancer protein levels not spiking.

The way it works is that I get a blood test about a week before my appointment so that my specialist will have the results in time. I had a good appointment with my specialist. He told me that my levels have remained stable and my blood platelet levels are normal (that is monitored to ensure I’m not getting a re-occurrence of TTP, which required me to be hospitalised for 12 days). I don’t have any infections, haven’t had any recent colds, am not feeling fatigued, and don’t have pains in my body. The only minor concern is that my weight has been dropping. So I will see him again in three months.

Feeling great. Staying positive. Loving life.

November Numbers
72.3 kgs/159 pounds
38.8 igG Cancer Protein levels
34.8 Beta 2 fraction
118 Hemoglobin
2.5 White blood cell count
1.1 Neutrophil
203 Blood Platelets

August Numbers
75.9 kg (167 pounds), (77.2 kg/170 pounds in June)
34.1 Beta 2 fraction (34.2 in June)
39.3 igG (36.7 June)
119 hemoglobin (119 in June)
2.4 white cells (3.3 in June)
192 blood platelets

Getting my flu shot on!

Yesterday I had my blood test (every 3 months) and my annual flu shot.

I woke up Wednesday morning with a good feeling that my blood test would be a success. By that I mean, that my arm (I only use the left arm now for blood tests) would be able to draw blood quickly for the 5 vials (about 10cc of blood), and that my vein would be found on the first prick. I have lost track at the number of blood tests I’ve had, but they do not get any easier. Each time I look away and think of anything except the needle in my arm.

Afterwards I decided to also get a flu shot. As I’m in a high-risk group (re: cancer), my specialist recommended that I get one again this season. I was fortunate that they were able to fit me in immediately without me having to come back another day. It was a quick experience, the nurse took a real good picture of me, and I was able to talk a bit about my research. I waited 15 minutes after it was done in the lounge and then left.

Last night my arm felt sore (also during my evening workout) and it is still feeling a bit sore today. I also felt a bit knocked out and slept the morning away. That is to be expected and I’m sure I’ll be back to normal by tomorrow.

I see my specialist next week to discuss the bloodwork. Staying positive and happy.

I’m not sure how it is with other people living with cancer, but the best time to hang out with me is after I have attended a specialist appointment for my multiple myeloma. Leading up to the appointment, my mind is focused on directing positive energy to keeping my cancer levels from spiking and keeping possible side effects to a minimum, due to my high levels. The day of an appointment I try and push any negative thoughts out of my mind and think happy thoughts.

Blood test location

So, last week I had my quarterly specialist appointment, which are every 3 months until my cancer levels significantly worsen. The way that the process works is that the previous week I will go and get a blood test (they will take about 5 vials from which they do a variety of tests). I can’t begin to count how many blood tests I’ve had. I don’t let them take blood from my right arm anymore, for some reason I am just more comfortable with blood being drawn from my left arm.

I seem to always arrive early for the specialist appointment and then try and do some readings of my research to keep my mind from wandering negatively. I sort of wish that when I checked in I could get a high five from the secretary that would tell me everything’s going to be ok, or an ice cream if the news wasn’t going to be great. A short time later, I was called by my specialist. I first got weighted to see whether I had lost weight (don’t seem to ever gain weight except back in the days I was on dexamethasone).

So here are the results:
Weight – 75.9 kgs (June 77.2)
Blood Pressure – 120/55 (June 125/60)
Beta 2 fraction – 34.1
Hemoglobin (June 119)
White blood cells 2.4 (June 3.3)
Blood platelets 192 (not relevant to cancer but the TTP I had Dec ’09 when the number was 4 – normal is 150 to 300).

So, I’m not going on cancer drugs at this time and I’ll see my specialist again in 3 months.

Staying positive, feeling great!

July 2008 – The month before I went on Revlimid & Dexamethasone

Since my diagnosis from cancer in 2006, I have tried to maintain a regular workout schedule. During the extended period when I was on chemo, that wasn’t possible so I found that I gained weight and my appearance was also negatively affected by the chemotherapy and related drugs.

Between Aug 2008 – Dec 2009, when I was on the cancer drugs Revlimid and Dexamethasone to keep my cancer levels constant, I found that my regular workouts helped me remain positive and minimised side effects.

I have been reflecting on the affect that exercise has had on my health after reading a August 7th BBC News article that cites a Move More report by the UK-based Macmillan Cancer Support.

Being active during and after treatment can:

reduce tiredness (fatigue)
reduce stress and anxiety
help look after your bones
help look after your heart
help reduce your risk of getting a blood clot
help keep your weight healthy

Today, as I am between cancer treatments, it is essential to exercise to keep my bones strong. As Multiple Myeloma will make my bones brittle, cause fatigue, cause pains, and infections, I feel very fortunate that I am able to workout without any complications.

Staying positive, happy, and (reasonably) healthy!

I haven’t written an update in a while, so I felt it was time to update everyone regarding my health. At the end of June I saw my cancer specialist again. Usually my appointments have been every 3 months, but this time my last appointment was actually in January. To recall, I haven’t been on cancer drugs since Dec 09 when I was taken off Revlimid and Dexamethasone due to my hospitalisation for 12 days because of a stroke and TTP. My protein igG levels which were in the low 30s in January had risen slightly to the mid 30s. No action had been taken as it isn’t really known if this is a significant increase. For example, when I see my specialist again in August the levels may actually go down. So I will have a blood test in a few weeks as a precursor to my next specialist appointment the following week. I have been very fortunate (knock on wood) not to have any major side effects such as fatigue, pain in my bones, infections, so I’m remaining positive.

Also on a related note, in June I saw my glaucoma (eye) specialist again (whom I have been seeing since 2006 due to an adverse reaction to a drug related to my cancer) Everything thankfully is normal with my eyes and my next appointment will be in 2012.

Getting my Mumps Vaccination

One of the odd things I have found with having cancer is how easy it is to psych yourself out and think you have contracted some random illness. A couple of weeks ago I woke up feeling that my throat glands were sore. I thought that I had got the mumps and was quite freaked out. I knew that there was a mumps outbreak in my region of British Columbia, so I went to my local clinic to get a free vaccination as I’m a student. I was told that because I was in a high-risk category due to possible side effects from the vaccination, that I should first get the ok from my cancer specialist. I did that and returned the next week for the shot. It has been about a week and a 1/2 since my vaccination and I am feeling great. Although, it wasn’t necessary to get the mumps vaccination (a booster for people who had the child vaccination), I felt it was safer to get it.

Focused on remaining happy and healthy.

When I was diagnosed with Multiple Myeloma back in Jan 2006, I was originally told that I had anemia, a common blood disorder due to a decrease in red blood cells. What was unknown by my doctor was the reason I had anemia. Eventually further testing reveal the cancer in my blood causing the anemia. There are a number of side effects of anemia such as problems focusing on tasks, memory loss, fatigue, and depression. However, I would like to share is how I have dealt with memory loss.

What I have found is that my memory is not what it was prior to my cancer diagnosis, such as forgetting the names of long-time friends I see often. This week was especially difficult. On the weekend, I met an international student and wanted to ask them if they knew my good friend of 3 years from the same country also studying at UBC. I started with “Do you know my good friend..” and then I blanked out on the friend’s name and had to resort to searching my social network friend’s list to find them. It was highly embarrassing.

Then on Tuesday while speaking with a friend who asked me to refresh her memory about my type of cancer, I froze. I had forgotten what it was called. Instead I talked about how it was cancer of the blood as I tried to recall the name of the desease without reaching for my blackberry to search google. Thankfully after about a minute, I recalled the name Multiple Myeloma.

In order to minimise these moments, what I have done is resort to using my blackberry as a cognitive aid to help me remember people and things as needed. For example, if I am attending an event that friends will be at, I will go through my address book or social networks to refresh names in case I run into them. For places that I attend frequently such as the gym, I will make a heading such as Summer 2011 and add new people’s names that I met. That way if I see them again, either in the gym or outside, I will remember where I met them and their name. Of course, sometimes I forget to do this, which has lead to awkward moments.

Do you have tips on dealing with sporadic memory loss?