How the Mominator earned her moniker

My children went through Webkins phase. You remember Webkins, those annoyingly cute stuffed animals that have a tag with a secret code that allows the child to play in a magical online world.

Princess Imagination had a Webkin, tried to go through the enrollment, but was stuck code not working. Tried several times. Major tears were involved.

Mom looked at the teeny, tiny code printed on the paper and realized that what Princess Imagination thought was K was really an R. Princess Imagination typed in the new code. It worked.

Mom, you're awesome! You’re the Mominator!!

Yes, I am the Mominator. I can fix things, and I am an advocate for my children

My Mom's cancer journey since September...m

In late September, my Mom had a lumpectomy and sentinel lymph node biopsy for breast cancer. Pathology reported the tumor was 5.3 cm; all 4 lymph nodes removed were positive, including 3 nodes in which the cancer had extended beyond the nodes.

She was classified as T3 N2a Mx Stage IIIA invasive lobular carcinoma of the left breast.
The stages are based on:
T=the size of tumor, and whether in situ or locally advanced,
N=the number of positive nodes and where located, and
M=whether the cancer had spread (metastasized).

The M in her classification is x, because there is a question of spreading. Her CT scan showed "small subcentimeter lung opacities of uncertain significance" and as well as "lesions in the liver up to 1.4 cm indeterminate for metastatic foci." I think that means they are not sure of both lungs and liver.

My mother had a terrible infection at the surgery site. Between the infection, and her doctors' vacations, and the holidays, further treatments were delayed.

In mid-December, Mom had a second surgery to clean out more lymph nodes in her armpit. She later had a CT scan of her brain and a PET scan of her body.

In the first week of January, Mom met with her oncologist. He says the other organs are clear. His treatment plan is radiation therapy and hormonal therapy. My Dad said he really wanted to make sure they got all the cancer out, and what about chemotherapy? So the oncologist recommended a second opinion. He also gave us the reports from the second surgery.

 

I read through the pathology reports, with my copy of Dr. Susan Love's Breast Book, 5th Edition close at hand. There were 9 lymph nodes were removed this time: 7 were positive for cancer, and including 5 nodes which were "almost completely replaced by tumor cells." PET/CT report noted "couple of borderline enlarged subpectoral (breast) lymph nodes" and "at least 4 small axillary (armpit) lymph nodes." PET/CT report stated for both Abdomen and Pelvis: "no significant increase uptake is noted," however, mentioned that "small lung nodules are beyond the resolution limit of PET/CT."  I question if there is more cancer in breast and armpit, and are the lungs and liver clear or not?

The amount of cancer, and its aggressiveness is really scaring me. I think my parents don't realize how serious this may be, and they have their heads in the sand. When I expressed my concerns to my brother, I realized that he didn't know how serious this was either. I explained to my brother that her tumor was large, and she had a total of 11 positive lymph nodes. The five-year breast cancer survival rates for patients with tumors 5 cm or larger, with 4 or more positive lymph nodes, is just 45.4%.  I apologized for the rude awakening, and he said he wished he could have left his head in the sand, but he agreed is more important that we help Mom & Dad through this.

So I prepared another list of questions to address these concerns. I mailed Mom (yes, snail mail) the list and I sent 2 copies so she could give one to the doctor. I also emailed the questions to my brother who will be going with them.

In the second week of January, Mom went to Dana-Farber Cancer Institute for her second opinion.  The Dana-Farber oncologist recommended a similar treatment plan is radiation therapy and hormonal therapy. But he suggested adding a clinical trial medication. He agreed that Mom was not a candidate for chemotherapy. He also says the other organs are clear, as far as we can tell. Yes, there are lesions and spots on the scans, which may be just aging. We don't know for sure unless we do a biopsy, which is very invasive, and really doesn't change our treatment plan either way.

My brother noted that neither oncologist talked about curing the cancer. We are managing the cancer.

Mom has started her radiation therapy and hormonal therapy.

Great news on my weight loss journey...m

I have lost 49 pounds so far!! I lost 17 pounds in 2013, and another 30 pounds in 2014. I've lost another 2 pounds so far in 2015.

Most of my clothes are falling off of me.

When I was at my heaviest, I refused to buy big clothes. I just squeezed myself into whatever I could. As I lost weight, my clothes became comfortable again, rather than squeezed. I am now buying smaller sizes again. 

I recently got measured for a new bra, and I went down both band size and cup size. That means I've lost at least 2 inches from my chest. I did not get measured when I was at my heaviest because I didn't want to stay at that size.

Scary headaches

I've been having these headaches for about 3 years now. At first it was just a vague, pulsing in my head when I coughed, or other straining movements. When I had a respiratory infection, and I coughed harder, the headache would get much worse. I've seen my primary a couple of times about these headaches, and both times he sent me to an ENT. There were scans of my head and arteries. The ENT said he couldn't find the cause, but it wasn't a stroke, an aneurism, or cancer.

However, the headaches have continued to get worse. They are really scary when I'm sick, but now are also rather bad when I'm healthy. The headaches were unbearable when I had bronchitis over the holidays. For 3 weeks I would cough and hack, then just hold my head steady until the blinding pain subsided. This happened during our Christmas vacation when we were traveling and visiting relatives. I had to have hubby drive because I couldn't risk having a coughing fit/blinding headache when I was driving.

I went back to my primary early January and said we have to do something; I can't live like this anymore. This time he sent me to a neurologist.

The neurologist said that I have a classic case of cough headaches. (He was surprised that no one sent me to a neurologist sooner.) About half of cough headaches have no cause that we can see, and are treated with medication. The other half are caused by a Chiari malformation, which is a structural defect that causes cerebellum to be forced through the opening at the base of the skull into the spinal cord. Researchers estimate that about 1 in 1,000 people have Chiari malformations. Symptoms often do not develop until adulthood. He gave me a script for the medication and sent me off for a MRI.

My MRI of the brain showed a Chiari malformation. The radiologist recommend (& my neurologist agreed) to have me come back for an MRI of the cervical spine to see how big the displacement. We found out: 15mm. The neurologist told me most people with a Chiari malformation start to feel symptoms around 7 mm; mine is doubled that. My brain is being forced into my spinal column by 15 mm! The neurologist said to skip the medication (and its side-effects) and sent me on to a neurosurgeon.

The neurosurgeon said I have a classic case of Chiari malformation. He recommends decompression surgery.  The surgery is routine, he’s does them “all the time.” My surgery is scheduled for March 9. I need to go through Pre-Admission Testing and medical clearance from my primary for the surgery.

Then it was back to the neurologist for my follow up appointment. I asked the neurologist about the risks/benefits of the surgery and his recommendation. He said in addition to the large Chiari malformation, I am developing a Syringomyelia, or syrinx, which is CSF-filled tubular cyst that forms within the spinal cord’s central canal. This is very common with Chiari malformations. The growing syrinx destroys the center of the spinal cord (you can figure out the rest). Not only does my neurologist recommend surgery, he said, “If you were my daughter, I’d recommend doing it soon.” He also said I need an ENT consult because the MRIs showed that I have a parapharyngeal mass which must be cleared before surgery.

I'm sorry I haven't said anything before because it has been overwhelming for me. I've had several doctor visits and imaging tests in the last few weeks. (I also squeezed in a resume and cover letter during those weeks.) Every time I start a post I get pulled away and I lose my train of thought.

So I have decided to have the surgery. Next up, Pre-Admission Testing, ENT consult, and clearance from my primary.