Wednesday, July 29, 2015
Today marks 6 years since went under the knife. I remember mom and my aunt faithfully attending to every need and listening attentively to every word spoken by the nurses and doctors prior to the surgery. Mom would later be standing in front of me the first time I sat in a chair to show me that I can be strong. I just wish I had known that was what she was doing at the time. I was very clostrophobic. My cancer took a toll on her and for that my heart still aches. God I did not want for my cancer to take a toll on her or anyone.
Two days prior to surgery I worked my last day, making every effort to prepare my work space so that someone could take over my responsibilities. My pain was so bad I could not be upright more than an hour at a time. I was looking very pregnant by then and unable to wear any pants or shorts.
The prep, the packing, the planning all so tasking because after this major surgery I knew I would be needing help for awhile. My family running on adrenaline to assist me however it could be done because I was single, renting a room in a house. What a nightmare. My sister and aunt literally taking two weeks off from their lives to cater to mine. My brother driving my car to Seattle and me moving from California to Seattle to live with mom so that I could get chemo at the SCCA. My sister did all the legwork to find the SCCA for me.
My life and the lives of those around me were completely upended. A traumatic time and event that still lingers in my battle with panic and anxiety today.
Life is much different now. My sweet mom has since passed away and now I live in Seatttle alone once again. Right now I cannot work but am increasing my participation in therapies to improve my overall health. I am and will always be on Avastin until I cannot tolerate it anymore as I LIVE with metastatic cancer. Praise God for this medication and for 6 years of living since that day!
I never thought I could live with cancer, but I can! I have medical appointments every week, but it is not trauma, it is just a new way of living.
My family here is my community of neighbors, friends, church and healthcare providers. I long to live where I can see the water from my window but am not likely to ever move away from the SCCA. The SCCA has been my lifeline. My gynonc, Dr. Heidi Gray, has been my angel on earth.
So on this day I celebrate a second chance at living and hope that my story offers hope to you, my reader, that no matter what your barrier, there can be a rainbow. My prayers and thanks go to all of my family who sacrificed so much of their lives to go through this with me.
My faith in God and my daily prayers helped me to stay grounded and strong during these years.
I invite you to attend an enlightening retreat that I feel called upon to nurture. It will be led by Sr. Anne Marie, a cancer survivor herself, of the S.O.L.T. Sisterhood. I attended their retreat in January and was so lifted by the epxerince that it was only natural to ask them if we can do one for women with cancer. Sr. Laudem Gloriae was so delighted to help.
Please join us in September. We have room for 10 more participants. The fee is a donation of your choosing. The rooms come with private baths and meals are provided. The campus has a beautiful meditation garden and Perpetual Adoration Chapel.
The link is located at http://www.deepprayer.org or you can email me your name, address, phone number and email address to: firstname.lastname@example.org to register for the event.
Thank you for sharing in my joy.
God Bless you.
Sunday, July 19, 2015
I have had rheumatoid arthritis (RA) since I was 15 years old. Biologics such as Enbrel tank my white blood cell counts, so I am stuck with prednisone, plaquenil, leflunomide and rituxan to manage my disease. RA and cancer together are a difficult combination of illnesses to balance. All things considered I feel fortunate because my physicians communicate well amongst each other to discuss options that keep my pain and swelling at a minimum.
I want to share a recent “hack” with you that thrills me. Introducing “Knuckle Knickers” (ha!). This wrap is simply and exclusively used to provide comfort and it comes from me to you, as a patient. It in no way replaces any prescription for a thermoplastic or neoprene hand support recommended by your doctor or therapist.
I get too much pain wearing hard splints, even if the splint is lined. I don’t want to wear neoprene gloves all day. Sigh. So this is what I created for myself. Maybe you will find this useful.
Our MCP (metacarpal-phalangeal) joints suffer greatly due to RA disease. They get very weak and swell easily with minimal use. Everyday use of our hands can cause permanent damage.
I have searched high and low for something to protect my MCP joints exclusively with no luck. Kudos to the makers of that soft colorful shelf liner material. I love this stuff. It can repel water and is easy to replace when this strap wears down. For example I will wear this when unloading the dishwasher, unloading groceries, doing household projects or even while driving.
Here are some photos of how I am using this soft rubbery shelf lining to gently support my MCP joints. All I did was cut a 1” strip of material and place it gently around my knuckles. I layer it twice around without increasing pressure on my knuckles.
Do NOT stretch the material or tighten it around your MCP joints. Simply spread fingers as much as possible while gently wrapping the material around your knuckles. This wrap will rest securely in place once either tucked in or secured with a clasp, as seen in the photo. I like it because it is soft and feels good.
Do NOT squish the MCP joints together when applying wrap. Wear as needed. Think of this as simply an extra layer of skin. The material breathes, can be cleaned and is pliable.
This soft material protects the MCP surface from extreme pain in case I accidentally knock the back of my hand into anything, like a door frame. Ouch! Seriously, tapping my knuckles on anything hurts quite a bit. I can don and doff this very easily. I know that for some people with RA it can be painful to put gloves on so this kind of wrap is very gentle and easy to complete.
Having RA requires us to re-think how we use our hands. We need to avoid using our hands in a way that encourages movement in a damaging direction. That is all grand and good and definitely worth learning. It takes at least 30 days to change a habit, so be patient.
*Glassware should be held with the palms of both hands. I did not have a tripod when taking the photo below ;-). My Knuckle Knickers helps me grip the glass surface, easing the pressure on my joints if I am not using my palms exclusively.
Always check with your physician to get their approval as well.
Please link here for information on how to help your hands:
Peace and Blessings,
|Simple shelf liner|
|Do not squish, this is just like another layer of skin.|
|Takes a little pressure off the joints.|
|Use two hands to lift cups and glasses.|
Monday, July 13, 2015
Forgiveness. Freedom from pain. Freedom from fear. Love. Happiness. Joy. Being a living contribution to our family and community. Making a real difference. Reconciliation. These are the big picture items that become important when we live with an illness like cancer, something that knowingly can shorten our lives. We cannot run away. God is here to show us the way to find these things, if we allow it.
Becoming whole; physically, socially, mentally, emotionally and spiritually healthy requires effort on our part. After the initial diagnoses of cancer we get an army of support, via adrenaline, from family, neighbors, even people we don't know. It is amazing. Thanks be to God we live through that initial battle but continue on in a different life. Our loved ones may need breaks too from the never ending fear of death. So how do we live with cancer, or life after cancer, in a healthful way that keeps us strong and also helps other people not to be afraid?
Our retreat is just a few months away and my heart says that you will experience some relief from the burden of your suffering if you join myself and other women in Corpus Christi this September. Our retreat is designed to address the essentials necessary for obtaining calm during this stormy phase of your life.
Please go to www.deepprayer.org and complete the easy registration form for the "Women With Cancer" retreat September 17-20 of 2015.
You get to unplug, focus on you and experience another kind of family.
The form is located n the "drop down" menu, under Women with Cancer retreats. Please share this information. I hope to see you there.
Peace and Blessings,
Friday, July 03, 2015
At the end of the month I will officially be 6 years post my diagnosis of high grade serous stage IIIC ovarian cancer. WOWEE! I am living with cancer, on Avastin still, and negotiating life in the hopes to share something that will help another sister or sister's loved one through this kind of life.
Thank goodness for social media. I just had my 51st birthday and in the process of thanking people I came across an ovarian sister's "like" on Facebook. I have no idea if that sentence is grammatically correct....ha. Anywhoooo....there was a shared page of one of the best articles I have ever read describing this new era of cancer survivors. We are the ones who are not in remission or N.E.D (no evidence of disease) and we are not in all out battle mode either. We are living with a cancer that can get out of control at any moment yet appear to be mainly stable.
I compare this to be like a passenger in a high speed race car, no control, an excellent driver, but one glitch and it could all spin out of control. I have blinders on so I don't know where the next turn will begin. This creates an interesting kind of life that on one hand quickly rearranges our priorities and on the other creates challenges as to how to actually execute this new plan.
It's one thing to have an epiphany and decide to live a charitable life giving everything to help humanity and it is another thing to do that but constantly endure pain, need treatment and worry about resources. How wonderful it would be to abandon it all and go live my life!
I am tethered to my treatment, but I thank God for that every day. So my way of reaching out abroad is not by travel but via the internet.
This article is important for everyone in this position to read, especially their loved ones. Individuals respond to this situation differently. Our culture is not prepared for the thousands of people living in this "state" when it comes to supportive resources. I just wrote a letter to my congressman about how SSDI and it's antiquated operations have hurt people living with advanced cancer. (I will save you the details now but SSDI has no way to effectively assist people living with advanced cancers who are not yet terminal. To understand this fully I will do a separate post at some point to educate you on the realities of working part time with cancer while receiving SSDI).
Please take a moment to read this beautifully written article. It is inspiring, truly!
THE NEW CANCER SURVIVORS Psychology Today
"This range of emotions—the simultaneous gratitude and dread, the intense awareness of both the exquisiteness and capriciousness of life—may of course be felt by anyone with cancer, from those with the most promising prognosis to those with the least. But for people whose cancer can be explained only as a chronic condition, the inner stew is often far more pronounced because of the sheer length of time they have to deal with it and the utter uncertainty about how it will unfold."
The New Cancer Survivors
Extraordinary advances have turned cancer from an apparent death sentence into a manageable chronic illness for many. But what does it mean to live with a terminal disease...interminably?By Wendy Paris, published on March 9, 2015 - last reviewed on March 24, 2015
God Bless America as we celebrate our Nations's Independence