Countdown to chemo 5: I’ve got chemo on my mind

sick on Flickr”>Taking a night walkSeptember 2012: Taking a night walk

It was a month ago that I learned from my Hematologist the sad news. My cancer had returned according to a late July blood test. It was quite a shock as I thought I wouldn’t have to worry about chemo again for a long time. My focus has changed. I’m living in this ‘chemo is coming’ bubble, prescription not thinking about much else.

I’ve got chemo on my mind.

There are two reasons for this. The first reason is that I’m really not ready for chemo, either mentally, physically, or financially. I’m still recovering from my 2013 chemo. A year ago I was in my 9th and final month of Velcade chemo injections. My immune system just isn’t as strong right now, I’ve had a lingering cold for about six weeks that seems to disappear and reappear. And I’m broke, unable to adequately take care of myself.

The second reason is that I’m really concerned about what might happen to me during chemo. I’m my own caregiver, so I need to deal with my cancer symptoms and chemo side effects as best I can. And the more I think about treatment, the more worried I become. It is more than just the multiple myeloma symptoms that could appear at any time (e.g. confusion, infections, or bone pain). It isn’t just the known effects of chemo (e.g. nausea, fatigue, impaired cognitive functions ‘chemo brain’). Based on my past experiences, I’m wondering what ‘out of left field’ side effects will appear.

Disodium Pamidronate
A few months after my cancer diagnosis as part of my pre-bone marrow transplant regiment, which included dexamethasone, I was given pamidronate as an IV. It is a bisphosphonate designed to help bones remain strong. Myeloma cells can eat away at bone marrow resulting in bone damage, so bisphosphonates are used to slow down that process and prevent bones from weakening (known as osteoporosis).

One morning I awoke to eyes that were red and watery. I was unable to look at any light source without intense pain. Even the light from my cell phone was too bright. I was referred to a Glaucoma Specialist who diagnosed me with ocular inflammation. That is inflammation of the uvea, the middle layer of the eye. My eye drops prescription then caused unexpected complications. As the medication and the dexamethasone were both steroids, they may have contributed to my increased intraocular (eye) pressure. Concerns initially arose that this might result in vision loss due to glaucoma. Fortunately, I was successfully treated. My inflammation was cured and my eye pressure returned to normal levels.

Revlimid Maintenance Chemotherapy
During maintenance chemotherapy for Revlimid, I began experiencing intense headaches coupled with a numbness in my tongue and vision difficulties. Wherever I looked, everything was masked in a white translucent haze. These vision irregularities persisted sporadically for a few days. With the Revlimid, I was given dexamethasone, and based on my past experiences I wondered whether it had caused my eye pressure to spike, resulting in my compromised vision.

I set up an emergency appointment with my Glaucoma Specialist who ordered a visual field test. During the eye test I passed out and was taken to the ER by ambulance. Blood tests and a CT scan revealed I had suffered an ischemic stroke in the left hemisphere of my primary visual cortex. An ischemic stroke is caused by blood clots in blood vessels blocking oxygen-rich blood from reaching a part of the brain. In my case, the area responsible for vision. The stroke was triggered by Thrombotic thrombocytopenic purpura (TTP). TTP is a rare blood disorder characterized by blood clots (thombi) that form in small blood vessels around the body in an abnormal fashion. There are 3–4 cases per million people diagnosed each year. In British Columbia (pop. 4.6 million), TTP occurs only 4–5 times a year. TTP treatment involved being hooked up to a machine that through an exchange transfusion uses an apheresis device to replace bad blood plasma with donor blood plasma. After 12 days in hospital I was released, cured of TTP.

Velcade chemo treatment
Last year, a day after my first Velcade chemo injection, I was walking on the beach when I felt tightness and sharp pain in my back and sides. I spent a restless night where the slightest movement caused intense pain in my side, back, and stomach. As the pain persisted I was upgraded in pain killers from codeine to tylenol with codeine #3, to hydromorphone. The hydromorphone made the pain manageable. I could still feel tightness and walked around in a deliberate fashion.

The weeks that pain consumed me were brutal. Simply adjusting my leg or arm caused a sharp pain or charlie-horse tightness in my side or back. Hiccups, a side effect of dexamethasone, felt like explosions in my body. I couldn’t stand up straight. I would fall out of bed onto the floor and then hunched over walk to the bathroom, physically moving one leg in front of the other with my arms. I spent my time binge-watching TV on my laptop, trying to lie as still as possible, learning about the weather outside my window from Google.

A CT scan scan revealed that myeloma cells had collected in the T7 vertebrae of my thoracic spine and were causing havoc. They were believed to be responsible for the severe pain that had left me bedridden. I was told that radiation would be required to remove them, to help prevent the pain from returning. A month later, I learned from the Cancer Radiologist that radiation would actually be unnecessary. The severe pain I had experienced was the result of my T7 vertebrae collapsing because of the cancerous cells inside the bone marrow. A still-circular vertebrae that causes pain due to cancerous cells inside can be treated with chemo or radiation (targeted chemo). Then cement is added to stabilize the walls of the vertebrae and prevent it from collapsing in the future. My T7 vertebrae was now flat and stable, which was why the pain stopped. So cement couldn’t be added to fix it and make it whole again. If another vertebrae was collapsing in the future, I would be able to receive radiation to kill the cancer cells and stop the pain. As the Velcade chemo was already killing cancer cells in my body everywhere (including in my thoracic spine), additional radiation directed specifically at the T7 vertebrae was perceived to be overkill.

Now, maybe nothing out of the ordinary will happen during my upcoming chemo. However, based my past experiences, I know that I need to remain calm and to expect the unexpected. I’m focused on being ready for anything.

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 since my macbookpro died during the summer. You can view my pictures on Pinterest.

Walter C. Koerner Library at UBCOctober 2012: Walter C. Koerner Library at UBC

About tyfn

From December 2019 I've been on Darzalex (daratumumab) IV chemo with Velcade (Bortezomib) injection chemo + dexamethasone. Have Multiple Myeloma + anemia, a rare incurable cancer of the immune system. Life goal: To spread awareness about Multiple Myeloma through my self-portraits. UBC MSc Grad.
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4 Responses to Countdown to chemo 5: I’ve got chemo on my mind

  1. Lori Fulkerson-Duncan says:

    Hello! Id first like to introduce myself and let you know how I found you. My mother, who is 67 yrs old, was recently diagnosed with Multiple Myeloma. This has been caught in the early stages. The drug that her Dr has chosen for her treatment is Velcade and Zometa. With that being said, I got on youtube and searched “Velcade chemo treatment” and found your videos. My name is Lori, my mother is Rosetta. The MM has not spread progressively through her body. She has what I call 3 “hot spots”. One on her left arm, one on her left leg and a spot on her spine. Again, her Dr. has said this is in the early stages. My mother has a history of cancer in the past. Breast cancer in 1986 – 6 months of chemo. Remission for 14 yrs. Colon cancer in 2000, all malignancies were removed in surgery. Now, again, 14 yrs later, she was recently diagnosed with MM. I have so many questions, there is so much that I dont understand and sometimes I think I actually do too much researching on MM which leaves me even more overwhelmed. One question I will start with is this…”When you were originally diagnosed, was your MM staged? If so, what stage? Did you see good results with the Velcade and did you have any nausea/hair loss or other bad side effects from the Velcade? Anything that you can share with me about MM will be greatly appreciated!! I look forward to hearing from you soon and I will keep you in my daily prayers!!! xoxoxo Lori, a very concerned daughter! HUGS!

    • tyfn says:

      Hi Lori,

      Thanks very much for reaching out to me. Sorry to hear about your mother’s multiple myeloma and her previous experience with cancer. I hope that Rosetta finds remission for an extended time from her treatment. I was on Velcade, cyclophosphamide (chemo pills), Valdrex, and dexamethasone (steroid) from Feb – Nov 2013. For the first time I had complete remission until July. My cancer levels have been increasing since then and I will have chemo in 2015 (no idea when or what treatment). I’m in Vancouver, BC. In Canada, health care is provincial so each province decides what chemo drugs they will pay for and those are the chemo drugs available to you for free. However, something like Valdrex (anti-viral) you get from a regular Pharmacy rather than the BC Cancer Agency where I got my other drugs each 5 week cycle (https://www.flickr.com/photos/tyfn/9534087538/). Just wanted to give you some background. I’m not sure where you’re located.

      When I was diagnosed I was not told the extent of my multiple myeloma, nor the stage I was at. I don’t remember what my igG was at the time. I did have a bone marrow test to confirm that I had MM. I didn’t have any symptoms beyond just feeling off (due to the anemia). I was bedridden, it was brutal.

      With the Velcade, it seems to set off myeloma cells in my T7 vertebrae. So I had severe pain for Feb/Mar as my T7 vertebrae collapsed (http://fadetoplay.com/2013/03/worse-four-week/). I didn’t get any anti-nausea drugs, they were optional, but I couldn’t afford the co-pay cost. I threw up once during that time (Feb-Nov). But there were days during my treatment when I felt awful in my stomach and I just lay in a ball. In general, I was well enough to walk around town, but mentally I was alot slower and concentration, focus, memory was off. I should add that I am my own caregiver and I’m single so I don’t have someone looking over me. I was living in my own place last year during chemo and I was fortunate to have friends drop by and check on me. There were also days when I was tired, but it wasn’t chronic.

      Since my diagnosis I have not experienced bone pain, infection, chronic fatigue, or excessive headaches due to my multiple myeloma. I have been shaving my head since my hair fell out back in 2006 due to chemo. Regarding Velcade (https://www.flickr.com/photos/tyfn/10488114104/), the 2 needles did leave temporary blots on my stomach (https://flic.kr/p/ecv9tQ). I didn’t have alot of weight gain overall, but dexamethasone as a steroid added fat to my stomach and face.

      I would recommend that you and your mother document her treatment. It doesn’t have to be public, it can just be private. I found that sharing my experiences helped others (like yourself) though.

      Here are some further tips:
      Emperor of all maladies book – http://goo.gl/16FXCb
      Photos of Velcade treatment: https://flic.kr/s/aHsjEty7TE
      Bradstrong – MM blog I read http://bradstrong.me/
      Myeloma Teacher – http://twitter.com/myelomateacher
      #mmsm – multiple myeloma healthcare hashtag community
      #medx – http://medicinex.stanford.edu/ – Stanford Medical School – patient-oriented health care community
      Robert Z. Orlowski – http://twitter.com/myeloma_doc
      Myeloma Beacon http://www.myelomabeacon.com/index.php/ (@myelomabeacon)
      Multiple Myeloma Research Foundation – http://www.themmrf.org/ (@mmrf)

      I discovered some amazing social network communities during my 2013 Velcade chemo that have been very supportive. If I think of more, I will share. Stay strong Lori + Rosetta!

  2. Lori Fulkerson-Duncan says:

    It’s so nice to hear from you!!! I appreciate all of the information that you’ve provided me with! Mom (Rosetta) has now finished 8 treatments of Velcade-Zometa-Decadron. She’s doing well with her treatments. She complains very little of pain but I can tell that she does hurt. She still works everyday at our Hospital. She’s been there 46 yrs this month. She’s a trooper for sure! I wish I had 1/2 the strength and courage that she does. I forgot to tell you, I am in Kentucky, USA.

    I hope that you’ve improved some!! Do you know anything more about your upcoming treatments in 2015?? I wish you nothing but the best and I will be sure to keep you in my daily prayers! Thank you once again for responding back to me. I want you to stay strong and like Mom says, “I’m a cancer survivor trainee”! You’ve got this, my friend!!! Take care xoxoxo

  3. Lori Fulkerson-Duncan says:

    I apologize for not responding to you sooner but I’ve had a lot going on in my life, kids and such! 🙂 I have bookmarked your blog page and I’ll be sure to check back often to check in with you and see how you are doing!! Again, take care my friend. I hope to hear good news from you soon!!!! xoxoxo

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