Age: 33 (32 when diagnosed)
Hometown: Toronto, ON
What school did/do you attend?Seneca College, graduated 1998 (two year diploma). University of Toronto, graduated 2009 (Honours Bachelor of Arts).
Do you work?
Yes, I have been working with the Provincial Government since 2000. I have had a few jobs but have worked with the Ministry of the Attorney General until 2009 mostly as a legal assistant. When I graduated I started looking for new jobs in my field still within the government. A few months later I got a really good Job with the Ministry of Government services. I was working as a Compensation Analyst (on secondment from my legal assistant job). I was there about three months before my diagnosis, but my contract was terminated when I was on sick leave recovering from my stem cell transplant. (shitty buzz)
Since my diagnosis in February 2010, I have not been able to work. At first I was just too weak and sick, then I was going through chemo, and then I had a stem cell transplant that really drains you. I had gone back to school in my mid-20s to earn my degree, my major was Employment Relations (HR), and I attended night school for seven and a half years while working full time. I finally graduated in June 2009, got my new job/promotion but was diagnosed with cancer a few months later. In June 2009 when I graduated, I felt that finally I had achieved something and was on the path to a great career/life, and then I landed a good job in my field and felt I was well on my way. Then, bam, I was diagnosed with cancer February 4, 2010, and lost my new job, and now am not sure of my future or my career. I have to be careful with stress, my white counts are low and drop if I get sick or at all stressed so I have to be very careful.
I will be going back to work soon hopefully, but to my old legal assistant job. I have mixed emotions. It is a very supportive office, and I love the people I work with, they have supported me, and my manager has really been there for me as her father had MM so she is knowledgeable about this disease, but it is not the job I went to school and worked so many long nights for! I have worked so hard to earn my degree I want to use it! I thought my 30s were finally going to be a time to enjoy life and make good money etc, and see the benefits of my hard work, but now I have an incurable cancer, and don’t know if I will be here in five years.
Your cancer experience:
How did you find out you were sick? What led to the diagnosis?
Wow, I will try not to write a novel here! It was a long ordeal where I kept getting sicker and sicker. I saw many doctors over two to three years and they kept telling me I was fine. The list includes five eye specialists; three neurologists; one urologist; one pulmonologist; one ear, nose, and throat specialist; several ER trips; many trips to my family doctor; and then I was finally diagnoses by the Ambulatory Internal Medicine Group for hard to diagnose or complicated patients, who then referred me to Hematology/medical oncology for treatment!
I had been having many strange seemingly unrelated symptoms for several years since 2007. I started having vision symptoms as one of my first symptoms. It was like it was constantly foggy! I went to at least five eye specialists over three years and they all kept saying my eyes were fine. In the winter of 2008, I kept getting sinus infections and ear infections. I went to the doctor and she gave me antibiotics but wasn’t sure. I started having tingling hands and some other nerve pains and dizziness so she sent me for an MRI. We talked about the possibility of MS. The MRI was ok; except it showed a serious ear infection. So, I was referred to an ENT doctor. At first he said there was nothing wrong but from the hearing test the nurse found I had ruptured my ear drum from the infections. He could not explain my dizziness and other symptoms.
I had really annoying carpal tunnel like symptoms, and my hands kept shaking with tremors so I saw several neurologists to test for carpal tunnel (negative). They said I was fine, and had no explanation for the dizziness or vision issues. Then, I had an issue with my bladder so was sent to the Urologist. He couldn’t figure it out (kidney stones was ruled out, as were other issues) He felt with my list of vision trouble, sensory issues, and bladder issues looked like Multiple Sclerosis. Plus my age and other factors fit the profile of having MS. He referred me to the MS clinic at St. Michaels Hospital.
The MS clinic proved to be a real headache for me (literally, haha). I waited months for the appointment, they did some MRIs: first my head (normal); again, there was nothing wrong with me. By this time I was having frequent migraines every two weeks at the least, facial pain syndrome, really tingling hands, trouble walking because my right leg was dragging, foggy vision, and I just felt so weak and sick all the time. At my “follow up” three months later, I demanded something be done because for a 31-year old, I could not cope. I was coming home from work and falling asleep on the couch at 7 p.m. and sleeping until I moved to my bed and then still could not get up in the morning. A lot of the time I felt so weak I could not lift my legs when walking and my right leg the toes would drag on the floor when I walked. He ordered a spine MRI which I waited for eight months and told me it was normal. I again demanded some type of treatment because I felt so sick all the time so he put me on a migraine medicine. At this time he did blood work and it had some irregularities but he tried to tell me I had high cholesterol or something that was causing the results to be mixed up. The result I was getting was an extremely high protein level in my blood which is what Multiple Myeloma causes. But my young age didn’t fit MM so no one thought of that.
During this time, I thought I was having hot flashes. I would wake up in the middle of the night and have to change my t-shirt because I was soaked in sweat. My family doctor did hormone tests and they were normal. I now know this is called night sweats and is a classic cancer symptom.
In January 2010 I had been on the migraine med a few weeks but I just felt horrible. I kept feeling faint and had to drink electrolyte beverages constantly (my electrolytes were off since the summer). I was at work at the end of January when I collapsed/ fainted at my desk. I called the MS doctor later that day and he finally said he did not know, and told me to go to the ER. He called ahead and told them I was coming. I fainted at the ER and was hooked up to fluids and monitors because my heart had an irregular rhythm. They did blood work and found I was pretty anemic with the high level of protein in my blood and low blood pressure. They sent me home told me to rest and set up an urgent follow up with the ambulatory internal medicine group for hard to diagnose or complicated cases. It is a group of internal med doctors and residents who collaborate (like House?). The group ordered blood work before my appointment and x-rays.
By the day of the appointment, I was so sick I could not eat anything because I felt nauseated all the time. I was so weak I could barely walk from the waiting room to the exam room without fainting. I felt dizzy, and just so weak. The resident started taking my medical history and was shocked how ill I was. He asked me had I not been to the doctor? I told him I’d seen doctor after doctor! I had many symptoms I was not even aware of like a type of skin rash called Livedo, and swollen nodes, he told me my eyes had swollen nerves in them. The resident doctor started to explain my plasma cells were out of whack and crowding out normal blood cells, I still did not clue in this was cancer. I said, “Do I have Leukemia?” and he said no, so I said “phew I thought you were saying I have cancer” and he said, yes you have another blood cancer called Multiple Myeloma.
Hearing those words was a shock. I had been to so many doctors and so often they had said “you are fine” when in fact I had a very serious blood cancer! I was shocked. They admitted me to the hospital from the clinic for an immediate bone marrow biopsy to confirm the diagnosis and because I was so faint and sick. I was in the hospital for a week and started high-dose steroids that day I was admitted. They did many tests like a bone scan, x-rays. MM causes bone lesions like holes in your bones so they do xrays to look for these. It also causes thinning bones. I had spots on my ribs, spine, and some thinning in my right hip. It was arranged me to start chemo that week. I was finally assigned to hematology/medical oncology. My hematologist had my MRI of my spine re-read and said I had Lytic Lesions which are classic Myeloma bone damage, but they had been missed on the first read by the MS clinic.
What is your diagnosis?
I have IGG, Lambda Multiple Myeloma, which is a rare blood/bone marrow cancer of the plasma cell. I was stage II. MM is different then solid tumors and has three stages. I had never heard of this. The resident doctor had to explain to me that blood is made of different parts, and if the blood is spun they separate into different levels and the plasma is the clear fluid at the top. He drew a picture on the white board showing that my blood sample had so many plasma cancer cells and not enough red or other cells. My family and friends had never heard of Multiple Myeloma either. This cancer generally strikes people 60-years old and over. I am one of the youngest, if not the youngest person diagnosed with this at the hospital I did my induction chemo at. This is one of the reasons my diagnosis took so long! I do not fit the profile and it is rare to begin with so no one imagined I would have this. There is no cure for MM, they told me that right away. They can treat it and knock it back but it always relapses. Of course I asked “how long” and no one could really answer but I got the feeling five years is a bit of a milestone. If you make it, chances are you’ll make it to 10 years. There is a subtype that 15 per cent have that is classified as aggressive and doesn’t respond to treatment, but luckily I don’t have this type!
What year was it? What was your age at the time? I was diagnosed February 4, 2010. I was 32 at the time.
In which hospital(s) are/were you treated?
I was finally diagnosed at St. Michaels hospital in Toronto, and did my induction chemo there, but I was referred to Princess Margaret Hospital for a stem cell transplant, and I still get treated there as there is a dedicated Multiple Myeloma clinic and the doctors are very knowledgeable so I feel I need to stay there to have access to the newest treatments.
At what level of education were you at diagnosis?
University degree, college diploma, and some other courses was getting ready to write my CHRP designation exam (Certified Human Resource Professional)
What were your first thoughts when diagnosed?
At first I was just shocked. I didn’t know what it was, had not heard of it, and just thought that was it I was going to die. I didn’t know what to do. I was by myself at yet another doctor appointment. They told me to call someone, but I didn’t know who to call. My sister was nine months pregnant, my boyfriend and I had only been dating 10 months, my brother and aunts live in a different city, and my parents were out of the country since they are retired and spend winters away. The resident doctor was really nice and he went to arrange my admittance to the ward and sent in the receptionist to make sure I was ok and keep an eye on me. I did call my sister who dropped everything to meet me at the hospital, and then I called my boyfriend who came immediately to meet me too. Later my brother in law came to the hospital. He asked me what I needed and I said a stiff drink so he snuck in the flask with some whiskey!
How did your family react?
My sister and brother-in-law called my brother in London, ON and he came to Toronto a few days later, as soon as he could. He called my aunts to drop the news, and when he was in town, we all called my mother long distance. She was expecting a call from us because my sister’s baby was due any day so she had a new cell phone with her all the time which made contacting her abroad easier. My mom and my stepfather came home as soon as they could arrange the flights. The doctors had told us not to Google Myeloma, but that was the first thing everyone did. Multiple Myeloma is an incurable cancer with an overall survival rate less than five years according to the stuff on the web.
In real life there are some brand new drugs for myeloma, so the research is not up to date, but no one knows the survival yet. It is non-curable, even with stem cell transplant, so my doctor made sure to tell me that it always relapses, and the best hope is to continue to fight it to remissions with the new drugs coming to the market. I asked her long remission I would get from stem cell, and she said the median was five years. So I asked what then? And she said if I had a good response they would do a second transplant. That’s only 10 years, I’ll only be 42, what then? And she said we need to put faith in the new promising treatments, no one knows the future. They are optimistic (Sorry this is kind of depressing and heavy)
It is not a “good” cancer to have (if there is such a thing). Everyone put on a brave face, but the first night in hospital my boyfriend and I held each other and cried. He stayed over every night in the hospital with me. My aunts came and saw me and were optimistic. My family has been good, we lost both my grandparents to cancer about five years ago, so we have a bit of experience with cancer in the family. My family was debating whom I would move in with, without my knowledge. I had my own apartment for years (no roommates) and they did not want me to live alone, plus I could not have coped. My boyfriend said he was going to get an apartment and move us in together to help me so he solved the debate.
How did your friends react? Were you treated any different?
I know I keep using this word but they were also in shock. Again, no one had heard of MM so I had to sort of explain what it was, what my treatment was going to be, etc. I asked people to keep it off the web (especially Facebook) and I told people as I saw them in person. Some said I did not look like a cancer patient; a few said I did not have “real cancer,” but for the most part, my friends have been supportive. When I was in the hospital for my stem cell transplant in isolation most of my friends made at least one trip to come visit me. I find it hard to open up and answer truthfully when someone asks me how I’m doing so I usually say fine. A few people kept saying I was dealing with everything very well. But inside I was struggling to come to terms with everything. I’ve been in counseling and trying to learn how to open up more. I think initially I was scared of scaring my friends away with to many details or going on to much about myself being sick. I’ve been able to be more honest with a few close friends who have really been there for me, calling me weekly, making effort to come visit me when I was really sick. Facebook has been good for me to keep in touch, too. Now I have signed up to do the Ride to Conquer Cancer for PMH in June, and friends have really paid up for my cause (almost raised $2,000 so far) and I am doing an event next week including a silent auction and friends have donated all kinds of good stuff! I really am blessed to have good friends. But at the same time I have not been able to work so I have been some what isolated from the real world. A few friends were on maternity leave, and a friend had surgery and was off work, so I had a few people to connect with during the day. Also I started going to a local church by my house where I have met some great support.
What did your treatment consist of?
Well, I was admitted for my initial treatment, bone marrow biopsy and testing. Then I was on high dose steroids called dexemethasone and a new chemo called “velcade” that is effective for myeloma. It is a new chemo that is targeted at myeloma so the side effects are less then older chemo. The major side effect of most myeloma drugs is peripheral neuropathy (pain and tingling and numbness in hands and feet) so I got this. Still have it but its gotten better so I don’t need to take meds for it. Initially I did not lose my hair, but I did have an issue with severe constipation almost needing medical intervention (worst case would be surgery). I was very anemic and had the fainting spells feeling for a long time. The steroids have their own side effects! Mood swings, weight gain, insomnia, and because I was off and on such a high dose, during my off times I was in withdrawal symptoms that included severe pain in my arms and legs. The doctor prescribed pain killers. They told me at my diagnosis they were gearing me up for a stem cell transplant as soon as possible. I did four cycles of the velcade/ dex (two times a week IV for three weeks then a week off was one cycle) and then transferred to Princes Margaret Hospital (PMH) for my stem cell.
My stem cell transplant was June 2010 with my own stem cells. To prepare for it I had to harvest my stem cells, so I had chemo, a different one called cyclophosphomide that was an all day ordeal with multiple infusions. I felt pretty awful from it (nausea, etc.) and my hair all fell out two weeks to the day after I had the infusions. Then they had to stimulate my bone marrow to make the stem cells so I was given daily injections of Nupegon. I got severe bone pain from the medication, where I could not get sleep or comfortable; it hurt to sit, to stand, to lie down! Again I took pain killers, but this bone pain is a good sign! It means you’re making a lot stem cells. To collect the stem cells, I was hooked up to a pherisis machine with two huge needles, one each arm. Your blood is taken from one arm passes through the machine that collects your cells and then returned to the other arm.
Then I had a Hickman line inserted as an outpatient procedure (ow!) and was admitted to hospital for my transplant. I was given high dose chemo called malphalan to kill my bone marrow, and the next day my cells were infused back to me to reseed my marrow to start making new cells, hopefully cancer free. The problem is usually a few sneaky cancer cells survive and that leads to relapse. I generally did ok, but could not eat and had a very upset stomach most of the time. I also got Mucositis where my mouth and tongue had painful blisters. One issue for me was I kept dropping my blood pressure so they would have to give me so many fluids. The chemo also irritated my kidney so it could not concentrate urine and I was loosing a lot of fluids kept having to run to the washroom! After awhile, it was kind of funny. My roommate was like “again?!” I didn’t get much sleep when I had to pee every 45 minutes.
On a more serious note I did narrowly avoid ICU for this low blood pressure. But the nurses at PMH were really great, and knew what to do to take care of you. I had to get blood and platelets transfusions, but my counts turned around I was discharged two weeks later and continued to recover at home. I got an infection in August from a bad cold that I could not get rid of because my white count was so low, so that was a bit of set back. I am currently in remission and mostly med free! I do get a once a month IV medication called pamidronate that is to help the bone damage MM causes. I don’t get many side effects from this but usually sleep most of the day.
My original hematologist was fairly young and was up to date on current medicine. She asked me if I thought I wanted a family in the future and asked if I wanted to see a specialist about fertility preservation. We saw a specialist and he said he felt the best option was to freeze embryos for later IVF. I am lucky to have a supportive partner who was up to this, and to have the financial means to do this. Because my stem cell transplant was going to be soon, we only had a month or so to do an IVF cycle. I did an accelerated cycle that was a few weeks of hormone injections, daily ultrasounds, and finally an outpatient procedure to collect the follicles. I had side effects from the hormones (mood swings). After the procedure, I experienced something called Hyper Stimulation Syndrome where my abdominal filled with fluid and I felt just awful so bloated and was vomiting. They gave me medication and offered to try and remove the fluid with a large needle but I said I didn’t want the procedure. It did clear up about a month later. But on top of chemo this was one more thing to deal with!
Describe the non-medical side
Well, I think I had the usual shock! And then the bitterness of why me? I felt isolated. It’s weird to be the youngest patient with myeloma. At PMH there are few other young people but I’m usually the youngest in the waiting room. Part way through my chemo last year I started going to church up the road from my house. I was looking for something spiritually. I started going to the women’s club meetings on Thursday mornings (they make me get out of the house and would pick me up and take me home) and I have had counseling with a pastor at the church who is also a family therapist, and that has really helped me accept, come to terms with, and deal with my diagnosis and all the other effects such as the likelihood that I will not be able to have a family.
What is your current medical status?
After my transplant I still had some detectable Myeloma cells in my blood (they call it an M-spike) so I was said to have had “A very good partial response” but a few months later there are no detectable cells. So I think this means I am in remission! I get the monthly IV bone medication.
How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
I used to be a fit very fit and active person. Before my diagnosis my health was declining, and I became very weak and tired all the time. I used to ride my bike everywhere, to and from work, shopping, etc, averaging about 25 kms a day. After my diagnosis/transplant, I was so weak and felt not like a 30-year old but more like a frail, sick, old person. I had never experienced this. From the high dose steroids I gained weight, and then gained more weight from a drug called Lyrica used to treat neuropathy. Also steroids make you puff out so my face looked really puffy.
My doctor kept telling me how weak you feel after the transplant, but I had nothing to relate this to. After my transplant I was so weak I had trouble walking up the stairs to our second floor apartment. My fiancé would push me from behind. Whenever we went out I was always holding his arm for strength and support. One thing that has helped me was joining a gym across my house. I use the pool and sauna a lot, and the stationary bike and weight machines. After a month I felt like I much more energy. I would recommend this for recovering. I’m still trying to drop the extra weight and fit in my clothes again especially because I’m going back to work soon and don’t want to buy new clothes!
What is/was the toughest part of your challenge?
I think it was losing my job after working so hard to earn my university degree at night school. Also I feel like I missed out on the opportunity to do stuff like travel. Now I wonder how long I have and what I should do while I’m feeling good from my transplant. Having a family was my main goal before my diagnosis, but now I’m not sure if and when I’ll be able to.
What is/was the best part of your challenge?
At the time I was diagnosed my boyfriend and I had been together for under a year. I didn’t know how he would react, if he couldn’t handle it and would walk. But he has really stepped up and been my main rock and support. He moved us in together, took me back and forth to chemo and doctor trips. Stayed with me during the hospital stays and has just been my main support. Last month he asked me to marry him! So we are engaged to be married in October. I feel like we have been through so much already. Sometimes you are just meant to meet people.
What really motivates you to keep going while you are sick?
I have always been a positive, optimistic person so I think this really helps. I am thankful that I am here and think that it could always be worse. I feel blessed to have good friends and a close family to support me. Another thing that I’m grateful for is that I have a good job that has sick leave and a drug plan. I never really used my drug plan much but now that I’ve been sick I see how much prescriptions cost! One trip to the pharmacy the bill was $200, and all I pay is 15 per cent. If I didn’t have coverage, that would have been $2000! Also, because we have sick leave and disability insurance from work I’ve been getting a partial paycheck even though I can’t work. So I can still pay my rent and expenses. And my job is held for me until I go back.
What lessons or messages have you taken away from your experience?
The main thing is to listen to your body. I knew I was unwell. If you feel so unwell you need to keep pushing for answers. It took way to long for me to be diagnosed and start treatment. My Myeloma specialist said I was sick for at least two years, probably longer, and the vision issues were my first symptom from lack of oxygen to my nerves in my eyes. The damage is permanent.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
Not sure, I know what Multiple Myeloma is now (unfortunately).
What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?
Since my diagnosis my family doctor said she has ordered the Serum Protein Electrophoresis test more often then before (this is the test used to monitor myeloma protein in your blood) for patients who seem to have general unwell feeling symptoms. Even though Myeloma is rare, it is now on her radar. She was really floored by my diagnosis. She said she only ever had two other patients with MM in her career and they were both much older then me. I was told there is no genetic component, and I got it from just “bad luck.”
Did you attend any support groups during your challenge?
No I did not really find any support groups. I did go to a Look Good, Feel Better session and it was pretty good. I did not think losing my hair would bother me, but I felt very self-conscious about it. I didn’t think I was cute bald. I was so puffy from the steroids and bald just drew attention to my face. At Look Good, Feel Better I got a whole kit of new make up for free and ideas how to cover the cancer effects on my skin and face. I already use make up but what girl doesn’t love a whole box of new make up? It was worth it. Good stuff, like Mac, too.
If you did not attend a support group, why?
I might have gone to a young person group, but multiple myeloma is rare, and then my age is extremely rare so I haven’t met many who I can relate to. There are a lot of breast cancer groups, and I found most people assumed I had breast cancer because I am a young women. I have joined an online support group for MM and find it helpful to be able to log on and talk to others about things like medication effects tests and symptoms treatments with others who can relate.
How are you connected with Young Adult Cancer Canada?
I got a pamphlet from my Hematologist. They put together a package of info that I might find more useful since most of the myeloma literature is about people 60 and over.