Mom has been fighting cancer for five months now, and we have all been very lucky to have WONDERFUL friends and family who have been by not only Mom's side, but by our whole family's.
As blessed as we are to have so many caring friends, communicating the latest developments in Mom's health situation to a very large circle of people has become very difficult. In that Mom, Dad, Allie and I have been relaying the same information many times to many people, it has become hard to remember who told what to whom and when, and then remembering to follow up with new developments. We have also long since lost count of the hours spent on the phone.
In an effort to alleviate these communication woes, Dad has asked that I set up a webpage to allow our wonderful friends and family to get the latest updates on Mom's health. I chose a blog format so that readers could post comments and send messages to Mom. I hope that you will visit this site from time to time, and that it will allow our family to keep in touch with you, our friends. If all goes as planned, you'll see posts written by all four of us.
I suppose a good place to start with this blog is a comprehensive overview of the last few months.
Last fall, Mom started to notice that her vision and language skills were deteriorating. While at work the Saturday after Thanksgiving, her symptoms finally became severe enough that she called my Dad and asked him to take her to the hospital.
What we originally thought (and hoped) to be a minor stroke turned out to be brain cancer.
Dad and my sister Allie took Mom to the hospital on the Saturday evening after Thanksgiving. She was admitted very late that night, and my husband Greg and I arrived Sunday morning. Once Mom's doctors determined that the lesion that appeared on Mom's CT scan was likely a tumor, she was transferred to a hospital in the city. By 9:00 Wednesday morning, Mom was being rolled into surgery to remove a teardrop shaped tumor from the lower left side of her brain. The tumor itself was a little larger than a golf ball, and the resultant swelling was about three times that size.
(While I am not going to include many names in these posts in the interest of privacy, I do want to mention that Mom's fast-lane into the O.R., as well as her phenomenal medical team, were facilitated by our wonderful friend Carl, to whom we are eternally thankful.)
Only my Mom could come out of brain surgery, look like hell for all of an hour, then return to her usual, beautiful self that afternoon. I believe that Mom's positive attitude and determined spirit have been instrumental in her recovery so far, and they have been truly inspirational to both of her daughters. I only hope that if Allie or I ever face a challenge this monumental, we can face it with the strength, dignity, and optimism that Mom has shown these past five months.
One of the good things about Mom's particular diagnosis (I will get Dad to write about the medical details in a subsequent post) is that Allie and I will not have to face it. Mom's cancer is not hereditary, nor is it the result of any lifestyle, environmental factor, exposure, or anything else that you normally think of as causing cancer. The doctors have said that the only factor that would predispose a person to this particular cancer is age, but that Mom is very young to have it. As frustrating and occasionally terrifying as it is, this is one of those cases of "life happens."
After surgery, Mom spent a few days of post-op with the most saintly team of Neuro-ICU nurses you could ever assemble. By the grace of Mary Grace, Mom got her pain meds whenever she needed them. I'd be surprised if Mom was alone for an hour of the week she spent in the hospital. Allie, Dad and I were there almost constantly, though I lucked out and never had to sleep on a chair from the waiting room, which Dad and Allie both did. We also allowed in a very small handful of visitors, including Mom's parents and brother and a few people who have known Mom and Dad longer than Allie and I have.
Mom got home a week to the day after she went into the hospital. She arrived home to dozens of cards, bouquets, and meals sent by well-wishers. Although she needed constant supervision that first week (in case her medication triggered a seizure), Mom gradually got back on her feet and was eager to get back to her normal life.
One month after Dad picked Mom up from work, she returned to a joyous, if tearful, group of friends at the store, and has been working a few days a week ever since.
The treatment of Mom's cancer has been aggressive. Every weekday for about two months, a friend drove Mom into the city for her radiation treatment. She has now received a "lifetime dose" of radiation, which is to say that she can never have radiation treatment again; her body won't be able to handle it. Her chemotherapy, which started concurrent with the radiation, has now moved on to a cycle of 5 days on, 23 days off. This cycle will continue for a long time: possibly two years. Unlike chemo for other types of cancer, Mom's is (mercifully) delivered in a pill form designed to affect only the brain.
Although Mom has come a long way since the removal of her "golf ball," her life, and ours as a family, has changed. Mom's vision is blurry, and she has permanently lost her right side peripheral vision. The doctors have told us that they hope the blurriness will improve, though they cannot tell how much or when. The doctors have prescribed steroids to reduce the swelling in her brain (caused by both the tumor and the surgery) and help alleviate her symptoms, though the steroids live up to their mood-altering reputation. The medications that she takes can leave her edgy and irritable, and sometimes with an Austin Powers-like lack of internal monologue. Her senses are all heightened; she is especially sensitive to noise, which can make even intimate social gatherings very difficult for her. The tumor was located near the area of the brain where language is controlled, and she has difficulty reading and writing. This is exacerbated by her impaired vision. Mom gets very tired, especially toward the end of the day, and usually naps in the late afternoon. The severity of these and other symptoms change from day to day, and therefore Mom (and the whole family) must take each day as it comes.
Now that the dust has settled from the chaos of the winter, our family's "new normal" involves finding ways to accommodate Mom's needs while helping her to go about her day-to-day business in a manner as close to her pre-cancer life as we can. One of the biggest challenges to this effort is that Mom cannot drive, due to her poor eyesight. The blurriness and lost peripheral vision are due to problems with her brain, not her eyes, and therefore cannot be helped by glasses.
Scores of WONDERFUL friends have stepped up to the plate again and again. Mom's sensitivity to noise and poor vision meant that no cooking or other bustling kitchen activity was allowed in the house for months after the surgery. Dozens of people brought wonderful meals nearly every night for months. Several friends drove Mom into and out of the city for treatments, meetings and tests, often taking copious notes, thereby allowing Dad to go back to work. I truly cannot express here what these and so many other gifts have meant to our family. Personally, I have felt enormously relieved that Mom has had so many people taking such good care of her. I live two hours away now, and although I have made the trip home many weekends, I have had my own challenges to overcome in the past few months that my husband has been deployed with the Navy. I am very grateful for the peace of mind that comes from knowing that other people who love my Mom are taking good care of her, even when I can't be there with her myself.
Now that Mom's radiation is done, she doesn't need drivers as often for trips to and from the hospital. However, she remains unable to drive, and therefore unable to take herself to work, the grocery store, the post office, or anywhere else she might have hopped off to before the tumor. This has put a significant emotional strain on her, as she has had to surrender a considerable degree of independence to her illness. We're all especially glad to see spring arrive this year, as the weather is nicer and Mom can sometimes walk into town. Another loss has been in the form of her hair, which is nearly all gone. Interestingly, it was not the chemotherapy that caused the hair loss, but the radiation. One of Mom's oldest and dearest friends gave her the amazing gift of a beautiful human-hair wig, which she wears most of the time when she goes out of the house. The wig bears a startling resemblance to Mom's real hair: I did a double take when I first saw her put it on: I thought I was looking at her younger sister! At home, she generally opts for a soft cap or scarf, as wearing a wig for too long can irritate the long incision on the back of her head.
Our whole family is grateful for the many and varied gifts that we have received over the past several months. We are incredibly lucky to have such a strong support network, without which our situation, and likely Mom's prognosis, would be very different. One of the projects that Mom has most wanted to tackle since the surgery is sending thank-you notes to the hundreds of people who have reached out to her and to our family. Unfortunately, her poor vision and difficulty reading and writing have made it impossible to even start writing these letters. Allie, Dad and I have all offered to help, but Mom has explained to us it is important to her that she send the letters herself: she is enormously grateful for the love and friendship she has been shown, and wants to thank people personally, even if it has to wait a while longer.
I'm not sure if this verbose entry succeeded in delivering the concise explanation of the past several months that I intended to write, but I hope that it did provide the "comprehensive overview" that I promised. My goal was to fill readers in on what has happened so far in Mom's fight with brain cancer in order to allow them to understand subsequent posts more fully.
If you're wondering why this blog is just getting started five months into Mom's illness, it is because we learned today that Mom will very likely be going in for a second surgery within a week. This will likely precipitate a communication overload similar to the one our family experienced (and our cell phones barely survived) five months ago. Hopefully this blog will help. This second surgery is not a surprise: Mom's doctors made it clear to us that this type of tumor likes to grow back. Fortunately, it does not move around the body, or even around the brain. With this type of tumor, doctors know exactly where to watch for recurrence, and they watch very carefully.
Mom's visual and linguistic symptoms have been getting worse recently, and a series of MRI results have shown changes (and growth) where the tumor once was. Which means more surgery. This has left us all a bit shaken up, but also ready to fight back. Mom is very calm about an impending second round of surgery, and I am confident that she has the strength to beat this cancer.
I hope that you, our friends, will keep in touch with us via this blog. Please leave us a note in the comment section: we'll be sure to share it with Mom, though it will not appear for the public to read.
Thank you- all of you- for your unwavering love and support. It has and will continue to make a very scary and difficult situation much easier. Mom, Dad, Allie, Greg and I appreciate your good wishes, and we look forward to sharing news of Mom's victory over cancer.
Best,
Lizzie
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