September is Blood Cancer Awareness month and Leukemia & Lymphoma Awareness Month. Read an inspiring story of survival.
Today, I am sharing an interview I had with a close friend who I have known since grade school. She is a 36 year old wife and working mother to three daughters (12, 11, and 3). She works in the mental health field on behalf of children.
In honor of Blood Cancer Awareness month, I am sharing her story, information about her cancer, organizations you can get involved with, and a word of hope and encouragement.
When were you diagnosed with cancer and at what age?
In October of 2010 (I was 31), I made an appointment with my primary care physician’s office due to joint pain, fatigue, symmetrical nodules (knee lumps) on knees, and severe bursitis on shoulder.
I had spoken to a family member who is an RN, who advised me to see my doctor’s office as there may be calcium deposits in my knee. During my visit, I saw the nurse practitioner.
My doctor began screening for me for multiple sclerosis (MS), Rheumatoid Arthritis, and ordered an x-ray because of my shoulder pain.
The x-ray showed the tumor and did a biopsy.
My doctor referred me to a pulmonologist (a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases) who referred me to an oncologist (a doctor who specializes in treating people with cancer). This all happened within one week.
My doctor advised me not to start doing any online research until I received an actual diagnosis.
What stage were you diagnosed with?
I received the call that would change my life forever on the way to a work meeting within 2 days after the biopsy. I gestured for my boss to come out of the meeting. She was the first person I told.
My boss is a Christian woman and a therapist, so she helped me so much emotionally. She helped me to mentally and physically be able to leave the building and begin the process of telling my family.
Things started happening VERY fast.
I went home to tell husband. On the way, I called my Dad and asked him to meet me at my Mom’s house. My husband and I drove to meet my parents, then to my in laws.
I immediately began having things scheduled the next day (doctor’s appointments, procedures, etc.). This continued for the next 7 days.
By the next weekend, I had been through surgery and had a port. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”. Wikipedia
The tissue samples showed lymphoma (a form of cancer that affects the immune system – specifically, it is a cancer of immune cells) at stage 2. (Stage 4 is full blown leukemia).
I had to do another test to ensure it wasn’t stage 3.
How did you feel when you first received the news?
I was shocked, devastated, terrified, confused, and began envisioning my death.
At the time, my kids were young (still in elementary school). I was worried about who would care for them because I wanted to be able to take care of my own kids. As a mental health professional, I wondered how my death would affect my children.
The major tumor location was in my lymph nodes, which are between the heart and my left lung. The doctors wanted to do PET scan which causes you to be radioactive, which means you can’t be around your kids for the day.
This seemed to come out of nowhere because there was no family history of cancer.
How did you tell others (friends/family) when you learned?
After the first round of announcements to my boss, husband, parents, and in laws, I told the remainder of my immediate family. Then, my pastor announced it to my church (that I have attended during my entire life). My boss told my co-workers.
Tell me about your treatment process.
As part of the prep for chemotherapy, the doctor’s office performs baseline tests of body functions, checked my pulmonary system, and determined I had asthma. I know, right? Asthma and cancer in the same week!
They surgically inserted a port-a-cath in the right side of my chest, PICC line (A peripherally inserted central catheter is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition).
Every 2 weeks for a 6 month period, I endured 4-5 hour sessions. I had to be driven by someone else.
At the first session, I had a panic attack in waiting room. On the way to the session, my vision looked skewed (everything looked different on the way to have the treatment – that was the onset of the panic attack).
I signed in, waited, couldn’t breathe, and couldn’t stop crying. It was embarrassing! I felt like I knew all of the medical implications (chemo is basically poison) and that it was going to be painful for the first time. Why couldn’t I control myself and my emotions?
They gave me liquid Ativan (a benzodiazepine used to treat anxiety disorders or anxiety) in the IV to help me relax and ease my indigestion (which is a side effect of the chemo medication).
The doctor’s office created a cocktail (a mixture of agents usually in solution that is taken or used especially for medical treatment or diagnosis), just for me. Initially, every 10-15 minutes they gave me a medication to manage my side effects. Over the course of the treatment session, I received a total of four cancer medications. The first chemo drug came through the IV. Some meds were pushed through and some were dripped.
The first time the port-a-cath was accessed was EXTREMELY PAINFUL (as painful as childbirth). They flushed me with saline, which causes a nasty taste to creep up the back of your throat (it’s a metallic taste/smell that you never forget).
On the bright side, I am amazed at the steps that the nurses take to make this experience as pleasant as possible. Something as simple as giving me a peppermint before the flush made things better.
My mom sat with me through all of my treatments, except one. I wouldn’t let her come on her birthday. My boss stayed with me. My husband and my mother were pivotal caretakers for our daughters during the time period I had my treatments.
My treatments were on Wednesday or Thursday. It took four-five days to recover, then I would work the following week.
The day of chemo was the easiest for me – I slept, peed, and ate (luckily, I still had my appetite). My mom and I had a “post-chemo” routine. We would watch the Food Network, lust after meals, concoct an idea for my mom to cook that night, she would grocery shop for us, she would cook, and we would eat.
I have heard most people aren’t so lucky and are extremely sick immediately.
Then, I was basically comatose for the next three days, mainly subsisting on an Ensure nutritional drink or soup. I experienced most of the typical side effects of chemo, two-three occurring at the same time. Aside from this, I also had hair loss and my nails turned black as a side effect of the chemo drugs. Your nails return to normal once chemotherapy ends.
I had chemo the week of Thanksgiving, Christmas and the Super Bowl!
How were you impacted financially?
My health insurance covered most of my costs. However, my surgeries, treatments, doctor’s appointments, prescriptions, and other associated costs created about $8,000 of debt. Many items were not covered by my insurance company.
My salary was never affected by my illness. I had accrued medical time at work based on my tenure and continued to accrue medical time while under doctor’s care. I maintained my paid/personal time off (PTO) while going through chemo, since I had only previously used medical time after my second daughter was born.
Over the course of five years of employment, my medical leave had accrued, leaving me with about six months of accrued time. My job was never at risk and my co-workers stepped in to fill in gaps. It worked out to my needing their assistance with my work for only about four days every other week .
Did you have a support network?
While undergoing chemo, the nausea medication knocked me out for days, but I still wanted to generally know what was going on at home, during the day to day, so my doctor changed my medication. I was a lot more cognizant after that change and was able to interact with my family more.
My family, friends, and church, were amazing. I had people coming over to my house to do my girls’ hair. People brought meals. Family helped with all aspects of transportation for medical appointments, household errands, and with transporting the girls.
Once a month, my co-workers would send me something – someone would make a blanket, I received lots of books, and others took turns bringing things to me (like meals or germ package). These packages included Clorox wipes, hand sanitizers, etc. and were extremely helpful because your immune system is wiped clean.
My boss even bought me a new bedding set and put it on for me.
Were there any programs or services offered to you that would help with the treatment process?
The Look Good Feel Better program via the American Cancer Society. Details about this free program:
Women who are currently undergoing cancer treatment, about to undergo cancer treatment, or have recently completed cancer treatment (chemotherapy, radiation therapy, or other forms of treatment). Registration is required. Only program participants may attend the workshop. Due to confidentiality and comfort level of the patients, as well as space restrictions, this protocol is necessary. This ensures that the participant receives full attention to gain the skills and confidence for increased independence. A patient may attend more than one workshop; however, she should bring her LGFB cosmetic kit with her to the additional workshop. A new kit will not be provided. Patients with a recurrence of cancer and who are receiving another round of treatment may attend another workshop and receive a new cosmetic kit.
There are also programs that provide access to wig (at no cost), medical care by nurses and their tips on how to overcome side effects and make things easier, and counseling is available.
Did you face any obstacles during your treatment process? If so, how did you overcome these obstacles?
I had to be off work for one week with blood clots. This was also EXTREMELY PAINFUL. I also had pulmonary embolism (a blockage in one of the pulmonary arteries in your lungs, usually caused by blood clots that travel to the lungs from the legs) in both lungs as a side effect of medication, and was diagnosed with asthma.
Did you act differently? Did it change your perspective on things?
I have been told I am different in ways some people appreciate and some don’t.
Looking back, I allowed myself to get more tired than I should have before going to see the doctor. I have realized how much we take for granted as part of daily life. I have had to accept a lot of disappointments along the way because doing something simple like getting in and out of the tub was a challenge.
I’m calmer now, more in tune with myself, my body, am more sensitive to changes in hormones and my body cycles. I’m more likely to say no (because I am realistic about my time and abilities). I am more confident. I learned to accept my diagnosis, as I was initially fighting it. I don’t care about what others think as much. I don’t waste time on fluff, I am more genuine, and get to the point.
I find myself sharing life lessons with my daughters sooner and more often.
Did cancer influence your decision to go natural with your hair?
Well…yes and no. So, all of my hair fell out. As it grew back, it was natural (without using chemical relaxers to straighten the hair). I had my hair braided after having my youngest daughter with plans to grow it out enough to relax it. During this time, I liked the natural look and four years later, I’m still rocking it!
Does cancer dictate the rest of your life?
Well, my ovaries shriveled up and I thought I went into menopause.
Chemo can damage the ovaries and reduce the amount of hormones they produce. As a result, you may have side effects like irregular or stopped menstrual periods, menopause-like symptoms, a higher likeliness of vaginal infections, and infertility.
Now, I take multi vitamins and vitamin D daily. My body is sensitive to what it’s neglecting, so I have to keep my diet in check. If I go too long without eating enough vegetables, I start to feel weak. I still have to manage anxiety and have migraine headaches regularly now.
A bright spot after my diagnosis
Because I had the blood clot, I had to stop taking birth control. Despite my fried ovaries, I ended up getting pregnant, within one month of the last treatment.
My doctor said he had never had a patient get pregnant! They didn’t know what to do or how to continue treating me!
I had to switch from a once daily injection to twice daily injection blood thinners during my pregnancy and for a short period after the baby was born.
Although I wasn’t getting chemo (because the cancer wasn’t present), I couldn’t do a PET scan (a positron emission tomography scan is a type of imaging test that uses a radioactive substance to look for disease in the body) because I was pregnant.
My medical team based their monitoring solely on my blood levels. A CT scan (special X-ray tests that produce cross-sectional images of the body using X-rays and a computer) was recommended after delivery to check the tumor size.
After delivery, I was monitored while breastfeeding.
I needed a scan because I was having symptoms, so I had to pump enough to support my daughter for 24 hours. It was hard being away from her for 24 hours, pumping/dumping milk (to keep up my milk supply) in order to have a PET scan.
I was diagnosed with cancer again when my baby was 6 months old.
There were some “active parts that were lit up,” which is an indication that the lymph nodes had cancer present again. The mortality rate within 2 yrs of treatments didn’t look good.
My pastors and I literally locked ourselves in the church and prayed during the night before my biopsy.
When I went to have the biopsy in the morning, the doctors could not find any cancerous tissue. Praise the lord!
What advice would you give yourself or others going through something similar?
Ask for what you need. Accept all help. Be okay with the way others do things (because it’s not going to be the way you would do it). The results are more important than the method. Surround yourself with positive people.
Learn to let your friends and family give updates on your health and status to others, so you can rest. Be strategic in your alliances. Be selfish. Allow yourself to experience the trauma – seek mental health support and other support services.
Acknowledge and manage your anxiety – through therapy, delegating, medication, or letting others help. Discuss this with your medical team.
Appoint someone to manage your health insurance coordination with medical providers and billing. Do not appoint your day to day caretaker – it’s too much responsibility on that one person. Due to sheer volume of services, prescriptions, appointments, and providers you will have, you will need help with managing the bills/insurance.
What advice would you give to friends and family of cancer patients?
Go do something for them, don’t ask. Something as simple as cleaning their bathroom every week can make a world of difference, since they may end up spending a lot of time in there.
Think of ways to help make their time on the couch or in the bed more pleasant. Again, don’t ask, just do it.
I hope that health regulations and insurance companies will work toward a program where therapy could come to patients. I would have loved to have someone to talk to, visit with, and help with all of the life adjustments necessary.
What is your current diagnosis / prognosis?
I am currently in remission (a sometimes temporary end to the medical signs and symptoms of an incurable disease.). I am waiting on my 5 year check coming up soon, which is done annually. Physicals start out quarterly, then semi-annually, with your oncologist.
A final word of hope and encouragement
We recently had a classmate from high school who died of cancer. She had Lymphoma as well. Her death hit me like a ton of bricks and made me realize more than ever that my life was spared and that it could have been me.
It’s sparked something in me, motivating me to realize dreams I never thought I could before. I am sharing my testimony more.
That makes me question what my purpose in life is and why I am still here. What do I need to do to take advantage of this blessing? The same can be said for my miracle baby. I wonder what the future holds for my daughter.
I am encouraged, thankful, and excited to see what greatness will come from both of our lives!
What You Can Do to Support Leukemia & Lymphoma Cancer Research
Patience Brewster, artist and designer of handmade and handcrafted unique gifts and ornaments, has worked very closely with the LLS (Leukemia & Lymphoma Society) ever since her son’s diagnosis with stage 4 Hodgkin’s Lymphoma back in 2002. Despite his illness, Herm worked with our company as he fought this disease with tenacity and unwavering diligence until 2005 when he left this world at age 26.
In his honor, her family started the Holland C Gregg IV Research Fund. Patience designs a special ornament every year to raise research funding toward a cure for these cancers. The organization raises funds that go DIRECTLY to an astounding research team. They are developing less traumatic and more effective therapies for blood cancers, and finding treatments for other ailments along the way.
You can find more information about their family’s story and the foundation:
Other Leukemia & Lymphoma Society links:
Have you or your family been impacted by Blood Cancer?