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.

So worried about my mother

My mom is a survivor of breast cancer. She had a lumpectomy 17 years ago. Her lump was just 1 cm and there were no nodes involved. She had radiation therapy as a precaution, and was followed with tamoxifen. All went well. She had yearly check-ups. All clear.

This year's mammogram showed a mass on the other breast. In mid-October she had a pre-surgery sonogram with guide wires, and then a lumpectomy, with nodes removed.

She doesn't know how large the tumor was, or how many nodes may be involved. She has been given a bunch of follow-up scans and exams. Both the surgeon and her oncologist have been on vacation.

 

She has had a raging infection in her breast where the lumpectomy took place. The doctors have had her on antibiotics, and they have drawn out the fluid three times now. The fluid removal procedure is so painful, my mom said she will kill herself before letting them do that again.

 

She just saw a doctor again on November 19 and she still knows nothing, except that after the infection clears up, the doctor "will go back in and clean up." So now we know the margins were not clean.

 

Next step: my brother and I are trying to get some medical proxy and HIPPA authorization forms. Also, I'm making a list of questions for my mother to take with her to the doctor.

 

Some thoughts and milestones on my weight loss journey...m

I'm long overdue for an update.

Drum roll please...

I am down about 45 pounds now. I say “about” because weight loss for me is not a straight line. (Also, my scale gives me 5 different readings when I step on it 10 times. I try to average what I think is correct.) 

So far this year, I have lost 27 pounds, which is about .6 pounds a week, or about 2.25 pounds per month. That amount of weight loss can be hard to see when our bodies change so much from day to day. A late meal, or even my state of hydration, can overshadow .6 pounds per week weight loss.

But the amount of loss is better than my previous two years combined: just 11 pounds for all of 2013, and only 7 pounds for all of 2012.

And even better, my weight loss has been cumulative, and 27 + 11 + 7 still adds up to 45 pounds lost, whether I did it in one year or three.

So how did I do it? Well, I've changed a lot since my last weight report. I started by making a lot of little changes:

1. I have learned to be patient with myself.
I record just the lower numbers as I lose weight. I look at these numbers as stepping stones and milestones. I do not stress that the scale goes up again the next day: it will continue to go down.

2. I've been changing the way I look at food.
Food is fuel for my body. Of course we all know that at some level. But reminding myself of that makes me make better choices.
Food is not comfort, nor is it a reward. Those two ideas are harder to accept, but accepting those ideas helps me to avoid temptations.

When I have a treat, I try to limit it to one serving. I don't accept giveaways. I went to choir last week, and one of the nuns offered me a donut. In the past, I would have had one (or two). Many places have a bowl of candy available, I have been really trying to just pass it by.

3. I've been changing the way I eat.
I put smaller portions on my plate; I take smaller bites; I eat more slowly.

4. I've been changing what I eat.
I make better choices. I've been eating lots more fresh fruit and veggies. I've been eating a lot less carbs.
Breakfast is yogurt and fruit, rather than a bowl of cereal.
When there are choices, I avoid bread, pasta, rice, and pizza, by having a very small serving or no serving.

5. I've been changing the way I cook meals.
I try to serve meals with protein plus lots of veggies. I try not to serve carbs at all.

However, my family still loves their carbs. So if supper is carb-heavy, I make adjustments for myself. Pasta & sausages for them becomes just a small serving of pasta, a sausage, but a large salad or lots of cherry tomatoes. Veggie subs, becomes just the veggies (similar to Subway's "sub in a tub"). On pizza nights, I'll eat just one slice, or even better, just one half slice of pizza, and fill up on cherry tomatoes.

6. I've been changing the way I buy groceries.
I have been buying so much more fresh fruit and veggies, and simple proteins.
I buy less food at a time but shop more often so that the perishable foods stay fresh. I'll get just 1 gallon milk, and one container each of strawberries, blueberries, and raspberries. Then I'll get more of the same later in the week.
I buy much less prepared foods, and I don't buy junk food.
I stopped buying our favorite treats: ice cream, cookies, chocolate, and butter cookies. I didn't go back to the stores on November 1 to buy candy on sale. I find that all of us eat less junk food when it's not in the house.

7. I changed the way I looked at exercising.
Exercising is not a chore. Exercising makes me stronger. Every time I exercise, I am a winner. I have been using step counters, and my daily steps have been increasing steadily for the last 3 years. I've been walking the dog more often, and for longer walks.

8. I started a training program.
I'm doing Couch to 5K by RunDouble. Theoretically, a person can go from being a couch potato to running a 5K race in just 9 weeks. I took me close to a year to run the distance of 5K.

I was doing well with the running. I got up to 3.5 miles in a run, and I was running 3 to 6 times a week. But we had some illnesses, I had the craft fair, and it has gotten real cold. I jog while I walk the dog, and he tries to keep up. I also jog in place when he stops. Maybe I can interest my girls in doing some "just Dance" on the Wii with me. I need to figure how to incorporate exercise when the weather is bad, or someone is sick, or I'm too busy.

I am happy to see that 45 pounds lost is getting some more milestones for me. I have achieved more than 68% of my weight loss goal, and I am more than 23% lighter overall than when I started. I started at a BMI of 34%, which is in the middle of Obese, I now have a BMI of 29%, which is the lower end of Overweight. Just 10 more pounds will get me to 24%, and the upper range of Healthy. My goal is another 10 pounds down from there, at 22%.

My clothes are all loose. I look better. I feel much better. The other day, I took Pink Ballerina shopping for a dress for a formal. While we were there, I bought myself some two new concert black dresses (from the clearance section, each dress was only $14.99). They both are classic styles and they look great on me.

I also have more energy. On our way out of the mall, we passed a Toys R Us with a floor piano on display. Lots of people were walking on it, but just hitting random notes. I went on it, jumped around, and played Chop Sticks. Pink Ballerina was embarrassed, but a woman came up to me and said it sounded great. All the way home I kept saying, “I played Chop Sticks, on a floor piano!” (For Whovians, I used the voice of the 11^th Doctor, when he said “Dinosaurs, on a space ship!”)

Many people are noticing either that I look great or that I’ve lost a lot of weight. A man from church stopped me in the grocery. He couldn’t place me. I told him we go to the same church. “Oh, you’ve lost a lot of weight!” Debbie from choir says “you look smaller and smaller, even smaller than you did last week.” I said “that’s because I’m still losing weight.” Liz just calls me “the incredible shrinking woman.” Hubby keeps saying how beautiful I am. With encouragement like that, I want to keep going.

Ashes

Ash Wednesday is the beginning of Lent. For many, "ashes to ashes, and dust to dust" begins their Lenten journey. Actually, what the priest or minister says during the distribution of ashes is "Remember you are dust, and to dust you shall return."

I find the whole ashes and dust thing very depressing. Jesus calls us to love and follow him.

Many people don't realize that there is another option: "Repent, and believe in the Gospel." In fact, in many missals, the order has changed. The repent is now listed first, the ashes is second.

I served for Ash Wednesday. While giving out ashes at Mass, I used "Repent, and believe in the Gospel." One person responded "I do." Another said "thank you."

May you find peace in Christ's Light this Lenten season.

Call to Mom's cell phone, Friday night, 9:08 PM

Mom: Hello Honey.
Teen: Where are you?
Mom: Home.
Teen: (slightly disappointed) Aren't you coming to pick me up?
Mom: I would, once I know the end time of your dance.
Teen: (a beat) Oh. It just ended.