Patient Profile: Carrieâ€¨
By: Pamela Jayne
Working mothers are under a tremendous amount of pressure balancing the needs of their children, a job, and other family responsibilities. We all know the extraordinary lengths they go each and every day; but can you imagine dealing with all of that and having to endure a cancer diagnosis and the brutal treatments that go along with it? In this interview, Carrie tells me what it is like to do just that. She also opens up about her fears, her experiences, her frustrations, and how discouraging it is to know that safe access to medical cannabis is in jeopardy. I spoke with Carrie the day before she began her second round of chemotherapy; and although she knew that the regimen would be much harsher this time and was understandably emotional, she said that she is excited to get through it and move on.
Thank you for sharing your story with our readers. Will you tell me about your diagnosis?
I have been diagnosed with Stage 3-C Ovarian cancer. It is kind of late stage because I am one of those people who will deal with pain until I cannot bear it anymore. This happened at the end of 2008, beginning of 2009.
What kind of symptoms did you have?
I had bloating, cramping, and severe pain in my lower abdomen. I thought that I was gaining weight, but then I was laying down one day and realized that there was an odd shaped lump in my stomach. By the time I had surgery, people thought I was six months or more pregnant. The lump was that huge. They had to do a complete hysterectomy because everything was just a big tumor. And now the cancer is throughout my entire pelvic and abdominal cavity. I got to the point where I had no signs or symptoms (thatâ€™s what they call it now, instead of saying remission), but it has reoccurred and is also on my liver. I also believe that there are a couple of growths in my intestines and pelvic cavity, so I am starting chemotherapy again tomorrow.
How often do you have chemotherapy?
Iâ€™ll be on a schedule where I go every three weeks for a full-length treatment that lasts all day, and then alternately, the other two weeks on Fridays. This is a new schedule for me, so I am not sure how hard it is going to be.
What was it like to get the diagnosis?
The anxiety of it has been overwhelming. The stress of it affects every relationship that I have. I have two daughters, ages nine and eleven. It is hard not to constantly worry about what will happen to your children if things donâ€™t go the way you hope they do. I start stressing and canâ€™t sleep at night. Then it gets cumulative and I canâ€™t sleep for several nights, even though I know that I have to get rest. I withdrew from a lot of people just because I didnâ€™t know how to tell them what was going on. Itâ€™s hard to maintain friendships that way.
Has it gotten any easier for you, in that respect?
Well, this is my second time going through chemo and I am trying to stay more connected and let people be supportive. Itâ€™s not that I want to keep it a secret; I just donâ€™t want to always have to talk about it. Every time I go to the doctor, everybody wants me to call and tell them firsthand what is going on. It can be difficult to have that same conversation over and over again.
How did the people in your life react to the news?
Well, I work as a lunch lady at an elementary school and one of my fears was the little kids asking about it. Before I went on fall break, I had hair. When I came back from fall break, I was bald. With this next chemo treatment, Iâ€™ll probably lose my eyebrows and eyelashes too. I guess I was afraid they would react like I was some kind of monster. Only one group of little girls asked, and I was completely honest and told them I have to take medicine that makes me bald. Most people, most adults, just donâ€™t really know how to treat you, especially someone like me who is already an introvert. When I go out, I wear a wig even though they are really uncomfortable. I just donâ€™t want to standout.
Are you doing any other treatments aside from chemotherapy?
No, I just do the chemo. The only other option would be to remove them (the tumors) surgically, but my doctorâ€™s opinion is to stick with just the chemo for now.
What is it like to go through chemotherapy?
You have extreme fatigue; I mean no energy at all, so you have to lay down a lot. Even driving is hard. Iâ€™ve had to pull over to lay my seat back to rest. Working a three hour shift, I have to keep telling myself that itâ€™s only three hours; I can do this! Itâ€™s exhausting. I do get nauseous, but one of the more disturbing side effects is the constant numbness in my extremities. Trying to work and not being able to feel anything is bizarre. The treatment itself is just a very long, boring day. They pump me full of IV Benadryl first, because once I had an extreme allergic reaction to an experimental medication and my throat closed.
You worked through all of that?
Yes. During the first series of chemo, I was a student, but I had to drop out of school. Now I work part-time because it is the best I could find, considering the cost of childcare. My goal is to keep my job â€“ well, thatâ€™s my goal aside from surviving cancer.
How do you feel today?
Today I feel completely normal, which I consider to be a blessing, because after tomorrow, I am going to be sick and in pain and still trying to do everything that every other single mother has to do. Iâ€™m going to try to go to work every day, Iâ€™m going to make Halloween happen for my kids; you know, all the normal stuff.
Will you explain how medical cannabis helps you deal with cancer and chemotherapy?
It gives just enough relief to let you get back to your life, as opposed to taking something that has so many side effects; those anxiety pills build up in your system. Iâ€™d rather use a little bit of marijuana because I think it is safer.
So cannabis does not have an intoxicating effect on you, and just helps you feel normal?
Yeah, exactly. I only use it for my symptoms. The other things, the pills, can be addictive.
So your doctors recommend taking pain pills?
No. Actually, this last time they only recommended Tylenol for the pain after chemo, which was not nearly enough. I was in a ton of pain. Iâ€™m sure that if I asked, they would give me prescription pain pills, but I donâ€™t want them. That is why I am so glad to have this new option. The pills they give for anxiety and stress build up in your system. I donâ€™t want that.
Tomorrow will be the first time you use cannabis while undergoing chemotherapy?
Yes. I didnâ€™t use it at all last time. This may sound weird, but I am excited this time. I am excited that I have this (cannabis) to help me manage. I have a plan, and I am excited to move on. I have my medical cannabis, and I will get through this. I know it sounds so weird to say that I am excited about chemo, but I really am. I know that this round will be worse, but at least I now have something that will help. Iâ€™m ready. Letâ€™s put it this way: if you went to the dentist and were not given Novocain, and the next time you knew you would have Novocain, you would be happy about that, right? Also, this will be beneficial to my children because I will be stronger; I will be able to manage my symptoms better. They have already been through so much: the surgeries, the hospitalizations, seeing me being so sick, watching my hair fall out. This time I will be able to be a better parent to my children.
Were you ever a recreational smoker?
No, I just got a waterpipe and had to ask how to use it. Now being able to go into a collective where I feel safe and can get good advice about it, and what kind I should use, makes all of the difference in the world.
Before this, what was your opinion of medical cannabis?
I voted for it, even though I didnâ€™t use it at the time, because I am for freedom and personal rights.
How will the U.S. Attorneyâ€™s decision to shut down all collectives in the city affect you?
I have a feeling of loss, because I cannot suffer the consequences if this option is taken away from me. Itâ€™s ironic that I just found this, and now it is being taken away. I just canâ€™t believe this is happening. And to also find out that medical marijuana cardholders are not allowed to own guns? I cannot believe that they can just trample on our constitutional rights like that.
When collectives are forced to close, will you continue to use cannabis as medicine?
I am the type of person who thinks ahead, especially when it comes to my children. So if they get away with what they are trying to do, and I canâ€™t safely get marijuana, then I will have to resort to using the pain pills.
And it is not your personal preference to use pharmaceuticals, right?
No; not at all. I would have no choice but to be put in the hands of the pharmaceutical companies. I think that is what they want.
What do you want the general public to know about being a medical cannabis patient?
I want people to know how simple it is. It is so easy to use; it actually works; itâ€™s safe and I can go about my regular life. In the beginning, I was stunned at how effective it was. Itâ€™s also important for people to know that I was not a pot smoker before I had cancer. Collectives are not just clubs for potheads.
When I asked Carrie how she deals with it all, she simply said, â€œYou just have to have faith that it will all work out.â€ I was awed and inspired by Carrieâ€™s bravery in the face of all that she is enduring. She asked me a few questions that I have wondered myself recently, such as, â€œHow can they just come in and deny our rights?â€ and â€œWe voted for this, so why are they taking it away from us?â€ We talked for awhile, even after the interview was complete. What struck me the most was when she said, â€œIf I can survive my government, I can survive anything.â€ What a sad state of affairs we are in, when a single mother, undergoing chemotherapy, is more afraid of her government than she is of cancer and the poison being pumped through her veins. God Bless America.