On Monday I began my second week of Pomalyst chemo + dexamethasone for my multiple myeloma and anemia. For 21 days out of every 30 I take a chemo pill (4mg) and every 7 days I take 10 dexamethasone pills (40mg in total). Dexamethasone is an oral steroid.
The first few days last week were a bit challenging with fatigue, tummy issues, and consistent hiccups (side effect of dex), but I think my body was just adjusting to this new treatment. Right now I don’t have any significant side effects beyond occasional fatigue and weight gain around my face and waist. I weighted 163 pounds January 28th and weighted 169 pounds yesterday.
As a cancer patient, living with a treatable, but incurable rare disease, an ongoing issue for me is when to share that I have multiple myeloma. My concern is how the news will be treated. I’ve lost friends after I’ve told them about my cancer. So I’m always worried that I will lose the opportunity to become friends with someone or that a budding friendship will fall apart. Truth be told, you can never have enough friends.
Lady Grey Tea
This contrast with how much I love Lady Grey Tea and how willing I am to share this passion with whomever will listen. I’m like a Lady Grey ambassador – “It will change your life for the better”. What I need to become is more confident talking 1-1 about my blood cancer and my experiences with chemo. I just don’t know who may have a friend or family member touched by cancer, that would welcome the opportunity to have a conversation with me.
I’m hopeful that I will respond well to treatment. I will have a blood test next week. I love photography and use self-portraits to help improve my health and well-being. Taking pictures brings me happiness.
To recap: I have Multiple Myeloma and anemia, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. From February 9th 2015, I am on Pomalyst and dexamethasone chemo treatment (Pom/dex).
In January I had my monthly blood test. I felt great going into it and chatted a bit with the lab technician that took my blood. She recognized me from previous blood test because I always like to photograph the process. I wasn’t carrying a tripod, so I had one of the other technicians take my photo. The next day I logged into myehealth.ca so that I could view my lab results. It is really beneficial being able to view my lab results the next day. When I saw them, I actually laughed out loud. The dramatic change in my cancer levels (igG) surprised me as they actually jumped for the second consecutive month. Although this news shocked me, I didn’t feel sad or unhappy. I felt that I was mentally prepared to face chemo again whenever it happens.
Last week I had my Hematologist appointment. As I sat in the waiting room I reflected on how the previous two appointment had changed my perspective about my health. In early July I learned that I had actually been in complete remission (no cancer detected in my blood) since November 2013. From Feb to Nov 2013, I had nine months of Velcade chemo. From my appointment last November I learned that in late July my cancer had returned.
4.0 – 11.0
135 – 170
150 – 400
2.0 – 8.0
January blood test
When we got to discussing my blood test results, for me, the only issue was when chemo would start – sooner or later. As my cancer levels had spiked, I thought it would be later in February or early March. As my Velcade chemo treatment was a success (re: complete remission for 8 months), I thought that I would be going back on that again. Instead, I’m going to be put on a fairly new chemo treatment called Pomalyst (Pomalidomide). This is because I would be partially resilient to Velcade. Right now Pomalyst, has completed clinical trials for a couple of years and has approval in BC, but hasn’t yet been licensed for general patient use. My Hematologist made a request for compassionate access as I need it now and I found out this week I had been approved. I also learned that as I don’t have private insurance I would receive Pomalyst for free on compassionate grounds.
Unlike my previous weekly injections as an outpatient, Pomalyst is an oral drug I can take anywhere. The treatment cycle is one 4mg pill a day for 21 days and then 7 days off. The Pomalyst is combined with dexamethasone, an oral steroid (10 pills X 4mg each week) to help augment the treatment, called Pom/dex. I have always taken dexamethasone with my previous treatment. There are side effects, such as depression, weight gain, and insomnia. I take a baby aspirin daily to help reduce the likelihood of a stoke and works as a blood thinner. It is possible that Pomalyst can cause blood clots as well as diarrhea and constipation.
Chemo 2013: Dexamethasone on left
As I’m going back on dexamethasone, it is expected that my eye pressure will increase again, so I will have to let my Glaucoma specialist know so that eye drops can be prescribed to lower my pressure, when necessary.
There isn’t an set date for when treatment will end. My Hematologist stated that I will remain on Pomalyst until I no longer respond to treatment (cancer levels lower or remain stable). However there will always be new drugs in the pipeline to treat me.
I’m focused on staying positive each day.
To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. From February 2015, I will be on Pomalyst, which are chemo pills.
I love photography and use it for personal health and healing. You can view my photos on Pinterest.
Last week as I was sitting alone on a bench, a group of people walked by laughing and enjoying each other’s company. I looked up, smiled, and said ‘hi’. One guy turned around, came by and apologetically said “I’m don’t mean to disrespect you”, reached into his pocket and handed me some change. A friend walking a few steps behind, reached into his wallet and pulled on a $10 bill. I thanked each person for their kind gesture. It was very much appreciated and will help me buy food this week.
In no way did I consider either gesture to be disrespectful, but instead believed they looked at my appearance (worn shoes, tattered coat) and concluded I was in need. It is interesting how in society we notice people that could use our help and I’m happy that they chose to reach out.
There are really challenging days. I feel like I’m living Fall 2012 all over again, which was a bad time I would like to forget. In 2014, I’m in much worst shape. Both my cell phone and laptop are broken, limiting my communication. My body and mind are still recovering from my 2013 chemo and I don’t have the means to turn my health around before my next chemo wrecks havoc on my world.
How will this all turn out?
To recap: I have Multiple Myeloma, a rare blood cancer. It is incurable, but treatable. From February to November 2013, I received Velcade chemo through weekly in-hospital injections as an outpatient. In October, I found out my cancer had returned, and sometime in 2015, I expect to be in treatment once again.
I also love photography and use it for personal health and healing. I rarely take photos now though. You can view my pictures on Pinterest.
Over the last few years, one of the side effects I’ve noticed of having Multiple Myeloma, a rare blood cancer, is that my memory has depreciated. This has been most apparent when I try and recall a friend’s name or try to remember a fact during a conversation (e.g. the author’s name when recommending a good book to read). To help counteract this, what I do is write things down in the memopad on my Blackberry. I rarely do social gatherings anymore, but in the past if I was invited to a party I would make an entry “Doug’s Party – June 4, 2011″ and then write down the different people I met. Similarly, I have an entry labelled “Library” and would list anyone I met there over time. Before I would enter the building, I would just give a quick look through, so I would remember the person’s name when I saw them. I found this to be an effective strategy to help with my memory.
A larger concern is that my face recognition is really off since my last chemo. I may meet someone today and then an hour from now, I won’t recognize them. Or I found that I don’t always recognize people that I used to know in the past. I just chalk this up, to one of the overall side effects of multiple chemo treatments.
I was reflecting on this today based on what occurred a few days ago. Somehow I completely misplaced my favourite sweater. It is the only one I have that isn’t frayed or ripped so I wear it daily as it keeps me warm when I’m feeling cold. Plus, it is a black zippered hoodie so it fits with anything really. I’ve found that one of the side effects of multiple chemo treatments is that my core body temperature has lowered. When it went missing, I panicked a bit, and tried to retrace my steps without success. However, I’m also in a happy period, since I’m cancer-free, so I didn’t freak out too much. The next day, I decided to try a grocery store I had visited when I needed some toothpaste, and thankfully someone had turned it in. What was odd is that somehow I completely forgot about it for some 30 minutes while travelling in the city. Total memory fail.
Life lesson: Be more careful with my things. Next time it could be my wallet or camera.
Just to give a recap, I’m living with a rare blood cancer called Multiple Myeloma. From February to November 2013, I was on my 4th chemo treatment called Velcade, where I had weekly in-hospital injections, in addition to a variety of other pills taken to supplement my chemo treatment. You can read the extensive background on my diagnosis and previous treatments on earlier blogposts in 2012 and 2014. I am also on twitter.
I’ve been cancer-free since Nov 23, 2013 and using photography for my personal health and healing so that my cancer remains undetectable for a long, long time.
I took this photo 13 months ago on UBC Wreck Beach the day before I began 9 months of chemo treatment for Multiple Myeloma, a rare blood cancer. I had completed chemo three times before and didn’t feel this would be anything different. Boy, was I wrong. Spending most of the year on chemo changed me in a number of ways, both mentally and physically, as I battled the severe side effects, which affected my ability to function on a day to day basis. Without a doubt, 2013 was an incredibly challenging year. Since completing chemo I have been constantly stressing about my cancer levels, worried about when treatment would be thrust upon me again, wondering what I could do to postpone experiencing ‘Day 1 Chemo Treatment’ anytime soon.
Every month I have a blood test so that the progress of my cancer levels can be monitored. If there are any problems or concerns, I would be contacted so that the necessary steps could be taken. What is beneficial is that I can go online and view or download my full lab results the next day using a free service available to BC residents called MyeHealth. So, knowing my results when I walked into my specialist’s office was helpful and alleviated some of the stressfulness I experienced when this wasn’t available.
The day of my specialist appointment always feels a little surreal. I try and minimize social interaction because my mind is just elsewhere. I wasn’t happy that my cancer levels seemed to be slowly increasing (7.7 igG in Feb to 8.9 igG in March), but rationalized that it was expected as I wasn’t getting chemo treatment. I felt a little sad that reducing stress in my life by focusing on my love of photography hadn’t kept my cancer levels stable as I had hoped. Just before I saw my specialist I sat outside the BC Cancer Agency and shared some thoughts via Soundcloud.
It turned out that seeing my specialist was actually a really good thing. When I went in and explained how I was feeling down because my cancer levels had continued to increase post-chemo (I thought the igG was the most relevant measure of my cancer levels), I got a curious reply. My specialist stated being pleased with my blood test results and clarified how my particular type of Multiple Myeloma, was more unique as there wasn’t one particular way to determine my cancer levels.
For many Multiple Myeloma patients, increased cancer levels are manifested through an M-Spike (see Myeloma Canada and The MMRF for helpful explanation of this) M-Spike,when too much of the same immunoglobulin (e.g. igA or igG) is produced. Immunoglobulin are proteins in the blood. When plasma cells are exposed to foreign substances, they produce different antibodies. These antibodies are referred to as immunoglobulin. However, in my case, I don’t show an M-Spike in my blood. In fact, there isn’t any one way to measure my cancer levels.
Looking at the igG by itself isn’t a valid measure for me. The average person has an igG in the teens, so mine being 8.9 is ok. In addition, my igA has been increasing each month since my chemo ended. However that is good, that means I have more healthy cells and less cancer cells in my blood. As well, my Gamma Globulin is in the normal range and has been increasing each month.
So long story short, my cancer is in remission. It is a message that how I’m living my life should continue. I feel like I’m playing hide ‘n seek with my cancer and right now I’m winning.
To celebrate, being in remission, I have placed an R on my door. I don’t need to worry about numbers right now. Instead, I’m focused on the alphabet. Here are my lab results (every 5 weeks) since ending chemo:
Protein Lab Results (g/L)
Beta Globulin II
1.8 – 4.8
5.1 – 15.0
6.7 – 15.2
.70 – 4.00
.40 – 2.30
4.0 – 11.0
135 – 170
150 – 400
2.0 – 8.0
I was pretty excited about the good news, so following my specialist appointment I made a video and posted it to YouTube.
The fact my cancer is in remission 4 months after my chemo treatment is a sign that removing stress from my life, putting my heart and soul into photography (recall my 2012 SuperBetter project), learning more about healthcare through events and tweetchats (e.g. #hcsmca and #medx), and educating myself about my Multiple Myeloma is the right path for a healthy future. Stress feeds my Multiple Myeloma and I won’t do things in my life that clearly place me on a quicker path to treatment in the future. So change will begin May 1st with my Cancer Sabbatical.
What is that you ask?
A sabbatical leave is taken by a person in order to reinvigorate and restore their energy, during which the person may travel, use the time to pursue creative interests, or focus on intellectual discovery and personal development. I’m going to take a break from the stressful life I’ve lived and embrace one where I feel fulfilled, happy, and healthy. Three areas of interest for me are:
Photography – Exploring how photography may be a creative tool for health and healing in people living with cancer
Tech + Cancer – Exploring how emerging technologies may be used to help people living with cancer thrive in their everyday life
Healthcare – Exploring how emerging technologies may be used to improve the patient/healthcare practitioner relationship.
If anyone would like to support my Cancer Sabbatical in some way, don’t hesitate to contact me (firstname.lastname@example.org or @tyfn) on twitter. You could provide advice (e.g. good books to read or share names of those that inspire you), financial support (e.g. help with living expenses or sponsorship to attend a conference), or social interaction (e.g. go on a photowalk adventure with me). Let’s be friends!
I’m excited for the journey ahead. In matter of love, a common piece of advice to ‘follow your heart’. For my Cancer Sabbatical, I’m going to ‘follow my health’.
Today, I’ve been reflecting alot on my life as I come to the end of my Velcade chemo treatment. I am focused on doing what I can to keep my cancer levels low by reducing stress in my life and prolonging and future chemo to a distance future. I’ve also been thinking about friendship when living with Multiple Myeloma and when best to tell strangers or acquaintances you’d like to become friends about your current chemo treatment. I’m wrestling with these decisions now and will expand my thoughts in a future blogpost.
This morning I woke up and took my dexamethasone (10 at 4mg each) and cyclophosphamide (575 mg, 12 total) pills. I also took my Valtrex and daily baby aspirin. This is my 38th week of chemo treatment, so my pills are shaped into a 38. My Rebel XSi is failing alot so I’m happy the focus worked today. I then napped a bit before heading to the Cancer Clinic to get my Velcade chemo treatment.
While waiting for the nurse I checked my blood pressure, pulse, and temperature. I watched some Seinfeld on the TV, which gave me some laughs and helped me relax for when the nurse arrived to give me my chemo injections.
Blood Pressure 136/65
Oxygen Saturation 97
Velcade chemo injections
I had no idea what my chemo treatment would be like with Velcade when I started. I assumed I would be getting an IV. I’m happy that I have one week yet. This hasn’t been the greatest experience at all, I can’t wait until I’m done, so my life can get better.
Just to give a recap, I am living with Multiple Myeloma (blood cancer). Since February 2013, I have been on my 4th chemo treatment called Velcade, which are weekly in-hospital injections, in addition to a variety of other pills I take to supplement my chemo treatment. You can read the background on my diagnosis and previous treatments on my blog.
You can view photos from my most recent self-portrait project on flickr.
At the Buchanan sculpture
You can also view photos related to my ongoing treatment here.
This is from the AP. Other reports mentioned only “complications,” which we now know to be pneumonia. It’s very common for myeloma patients to develop pneumonia.
Ferraro died at Massachusetts General Hospital, where she had gone Monday for a procedure to relieve back pain caused by a fracture. Such fractures are common in people with her type of blood cancer, multiple myeloma, because of the thinning of their bones, said Dr. Noopur Raje, the Mass General doctor who treated her.
Ferraro, however, developed pneumonia, which made it impossible to perform the procedure, and it soon became clear she didn’t have long to live, Raje said. Since she was too ill to return to New York, her family went to Boston.
Raje said it seemed Ferraro held out until her husband and three children arrived. They were all at her bedside when she passed, she said.
“Gerry actually waited for all of them to come, which I think was incredible,” said Raje, director of the meyloma program at the hospital’s cancer center. “They were all able to say their goodbyes to Mom.”