Entering with
crutches, canes, walkers, wheelchairs cancer courage may be disguised
Behind baldness,
oxygen cannulas, wigs, hats and headscarves.
This cross section of
America
And invasive
procedures.
We walk bravely into
sterile treatment rooms, sometimes sharing these intimate
Moments with
long suffering loved ones, sometimes alone.
Cancer coaxes us to
unnatural waiting room conversation, quick comrades exchanging
Secrets and realities
of cancer survivorship.
Destructive realities
and reassurances of re-creative hope bond this family of coincidence.
Conversations are
careful, listening is attentive; Sharing is respectful.
Blessings are voiced
and support is gentle.
God is present in the
waiting room.
- Sharon Gould, 2007
Cancer treatment means more than losing your hair. Its much better than stem cell transplant, but much worse than catching the flu. A friend recently asked me if I had any good information on care for her father as he began treatments for his recent cancer diagnosis. I wrote up as much as I could and thought it was worth sharing with the whole world, so here it is for your perusal. God willing, you are never in the position of needing to care for someone or support someone who is undergoing chemo or radiation, but if you are, please know that you are not alone and that there are many things that can be done to improve a bad situation.
My mother had an irregular biopsy result at age 46. Three years later, during the week of my senior prom, she was diagnosed with stage III breast cancer at 49. My parents intelligently decided to keep this information secret from me until after I walked across the stage to receive my high school diploma. Just 17, I had a habit of skipping classes, and they probably knew that I would go off the deep end with information like that. The weekend that I was dancing the night away at the Adams Mark Hotel with my high school sweetheart, my mom underwent a radical mastectomy and chemotherapy, including the practically-lethal FAC combination of drugs. After that, she took several more rounds of chemo, and was finally placed on Tamoxifen. After 5 years on Tamoxifen she was "cured" and released from further treatment. "Cured" turns out to be one of those words that can be a big fat lie, because she was diagnosed during an emergency exploratory surgery with stage IV metastatic breast cancer in January 2004. From 2004, I was at every meeting, every hospital, every diagnosis, every doctor's office and every treatment until she died in 2009.
The photo above was taken in 2009, just days after we had received the "you have three months left" monologue by her doctor. My mom figured that news meant she should accompany me on a 6 hour round trip road trip to see her youngest granddaughter's dance recital. This is the kind of trooper my mom was. I was privileged to make the journey - through cancer treatments and to the dance recital - with her.
As far as pain and symptom management, there are so many things that could happen, so I don’t want to drown you with information overload. Cancer is not a playbook that has any rhyme or reason to it. Don't waste time worrying about and learning about stuff that is not actually happening to your loved one.
The most important thing I can say to you is this: say what you need to say, be real, do what you need to do, listen, be with, support, pray. That last one bears repeating - pray. Some of your prayers will be streaked with tears and more will come as the lump in your throat sort of prayers. Still others will be the prayers that no words can adequately convey. Pray these wordless, tearful, inadequate prayers. It is important, especially in a time like this, where things are clearly not in our control, to get the words out to the One who hears them all.
And I realize that typing everything I know from my journey is probably going to just freak you out and for no reason whatsoever. So this is the sum of things - your job is to be a squeaky wheel. Make sure your loved one knows they do not have to suffer silently if something hurts or does not feel right. The doctors, nurses, pharmacist and even palliative care team, can make many changes, both small and large, that can help alleviate symptoms or make a patient feel better, so do not give up. I took care of my mom’s treatment and kept her records and asked the questions and managed her care, side effects and everything for five years. I could not possibly type it all here, but here are the top ten things that I think are worth considering:
1. Do not blindly trust. The medical establishment is great, but if something does not seem or sound right – ask ask ask. People make mistakes. People don't always pay attention, or know what is going on. Treatments are optional. Not every doctor is aware of what the other folks on the treatment team are up to. Speak up.
2. Don’t push your loved one. Don’t make them do stuff (eating their entire plate, or going for a walk). Just keep gently trying to help them. Try not to get mad at them - this is a tough journey for us, but it is even tougher for them. If they are up to it, read scriptures to them, play a game, watch a movie, or pray with them or over them. Pray over their illness, their body, and whatever is hurting.
3. Caregivers have feelings too. This is hard work. You will experience grief, anger, and all kinds of yucky emotions. Stay in touch with your feelings and get good self-care. There are organizations just for us caregivers. Churches and hospices usually offer these types of groups. If you get really tired or overwhelmed, see about getting some help – a family member, a maid or even home health if needed.
4. Don't be afraid of alternative therapies, but don't be a fool either. Chemo and radiation have their well-respected place in medicine, they really do work. There are other complimentary therapies that might be available to your loved one also. At MD Anderson Cancer Center in Houston, I was able to consult a healing touch therapist, who took care of my mom while she was in ICU. And I was introduced to Reiki, which channels energy and healing in the body. I saw this stuff work with my own two eyes. Don't forget to make your plans known to the primary doctor, for sometimes some things are off limits. For example, my mother was not allowed to take vitamins, because they would give health to the cancer cells.
5. Make new best friends. Befriend the scheduler, the nurse, and the nutritionist. These people are your team. The good news is that cancer care centers, docs and nurses are good at this cancer crap – they know this stuff - so make them your allies. Bring them cookies and send them cards and generally make sure they fondly remember who your family is. You want these people on your side in a crisis, and in the medical field, the way to the heart is typically through the stomach.
6. Sometimes its the little things. The right products or routine can make all the difference. While taking radiation, my father in law used a mouthwash called Biotene
7. Cater to whims. Chemo altered my moms taste quite a bit. Gave everything a metallic and salty taste, and while this was usually temporary, it really disrupted her desire for food. When mom stopped wanting to eat, she tried those drinks from Ensure and Boost, which are kinda gross. So I started to make these power shakes – with ice cream, whole fat milk, protein powder, a bit of Ensure, and then I'd mix in all kinds of fresh fruit. She could drink way better than she could eat. After a long while, she did not even like those, so we found an amazing little drink called Resource Breeze that you can order online
8. Liven up the treatment room. For nausea – the best thing the doctor can do is give Zofran with the chemo drugs. Consider bringing a "picnic" bag full of things - ipad games, ipod movies, music, relaxation Cd's, a good book or whatever else will take their mind off the treatment. And know that sometimes nothing will take their mind off the treatment. Don't forget
9. Learn the patterns. Like any good parent of a preschooler knows, figuring out the right routine makes life so much easier. In cancer treatment, the same rule applies. There are tons of chemo drugs, sometimes they are given alone, sometimes in combination. Each drug is a different animal. Read up on them and their side effects and other helpful bits of information to help you figure out the pattern of your loved one's needs as well as their side effects. Learn about the period called "Nadir" – its usually 10 days after his treatment give or take. The patient is usually more apt to get sick/infected during this time when their blood cell counts are down, so take precautions during this time. You will probably see a pattern emerge for them – see if you notice when their “good days” are, and try to schedule stuff (visits, meals, fun) on the good days. The power of the immune system is greatly reduced during treatment. Their are lots of easy ways for them to get sick - after the first ICU visit, we bought stock in Germ-X and even kept a little box of masks and gloves during nadir days, hospital visits or when she wasn’t feeling good. Remember, the sickest place on the planet is the hospital!
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