Archives for category: Facts

Patience, Persistence, Peace

July 26, 2012 //

These are the three words I started saying to myself about seven years ago. At the time, I had started Weight Watchers and found this trio helpful in motivating myself, dealing with set-backs, and staying the course. I ended up losing 43 pounds, then gaining 10, then gaining 10, then losing 20… I have also used them to deal with other life challenges. To me it conveys a learning process–knowing when to stop and wait, when to keep trying, all the while working toward a peaceful place of balance.

I think a lot about balance. My balance right now is tenuous. The three P’s are being put back into place in a major way. Dr. Beatty called last night to give me a brief overview of the final pathology report. He had given me preliminary results on Monday, which were confirmed. The tissue removed in my last surgery contains stage 0 cancer and one area of invasive cancer. The areas are not contiguous, which suggests that I have multiple cancers in my breast. Dr. Beatty prepared me for this on Monday and I made an appointment for a plastic surgeon for next week for an initial consultation. Dr. Beatty is recommending a mastectomy and I am scheduled to have it on August 8th. I don’t know the full pathology report and I have many questions to ask him. Although I’m not happy about the news, one bit of relief is that their finding another invasive tumor makes it easier for me to decide to proceed with surgery. As you may recall, the results of the 1st pathology were somewhat inconclusive. The pathologists described a 2.5 cm area of breast tissue as, “atypical ductal hyperplasia bordering on ductal carcinoma in situ.” ADH is not cancer but DCIS is cancer, albeit a non-invasive cancer. Basically, they weren’t sure but came down on the side of treating the area as DCIS.

As a diagnostician myself, I understand this. Sometimes my diagnoses are not slam dunks and there may be some discrepancy or lack of clarity. Sometimes I recommend further evaluation, or monitoring and later reassessment, the latter because time can often provide additional diagnostic clarity. But other times, I am unwilling to risk a child not having access to a potentially highly effective treatment. In those cases, I use my clinical judgment. The risks are greater for these pathologists so I imagine that they often take a “better safe than sorry stance.” I was fine going with “ADH bordering on DCIS” for a second lumpectomy but was unsettled with the prospect of a repeat this time and giving up my entire breast based on those kinds of results. But this second pathology report is clearer and I feel that my decision-making is more soundly grounded in “what is” rather than “what if”.

My next big results are the oncotype testing results. I really hope they come back as low risk for recurrence so I don’t need to have chemotherapy. The prospect of losing some of my very best physical features is discouraging not to mention just feeling dead dog sick. I remember how much I enjoyed the nausea, vomiting, and crushing fatigue of pregnancy. I enjoyed it so much that I’ve formed an informal network of friends who like me, love children, especially our own but did not enjoy pregnancy at all. I won’t name any names because it can be stigmatizing to admit that pregnancy wasn’t the powerful earth mother experience that others talk about. I did have a good childbirth experience, although I did ask for medication early and often, which is also a controversial thing to do. Although I have seen some women friends proudly post on Facebook things like, “little Johnny was born weighing 7 pounds following an unmedicated birth”, I haven’t seen anything like, “little Zoey was born weighing 8 pounds after blasted out with a cascade of petocin followed by my OB using a plastic stick to manually break the ambiotic sac, followed by the administration of some opiate that did nothing for pain, followed by a botched administration of an epidural (if the anesthesiologist misses the epidural space, the drugs don’t work), followed in an hour by an effective epidural, which left me in such relief that as I saw the I.V. bag empty down to just what was left in the tube leading to my arm, prompted me to ask twice, “Are you sure there’s enough in there?” and to reassure hospital staff that I would be good for the money if my insurance wouldn’t cover another bag of magical drugs.

Okay, triple P’s. I’m hoping, waiting, and breathing.

Tags Breast Cancer, Coping with cancer

Categories Facts, Feelings

Protected: Upside of inconvenience

July 20, 2012 //

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Categories Facts, Feelings, Not Cancer-the other part of my life

Reach Out and Touch…Somebody’s Toe

July 18, 2012 //

Surgery went well and I am resting at home. Dr. Beatty reassuringly squeezed my foot as he left after we had our pre-op talk. My first thought? “I have to tell my mom!”.

This is the email my mom sent to my last night after hearing about the clear PEM scan. (It still won’t make total sense so I’ll explain it later in the post.)

Hi Liz,

I was so relieved that I forgot to wish you well on the lumpectomy.

Hope all goes well. We love you so much.

All week I kept hoping that Dr. Clark would squeeze my foot

and tell me you’d be OK. I guess he did.

Okay, so here’s the explanation:

I was a preterm baby born with respiratory distress. My body was not yet producing sufficient surfactant, which allows lungs to inflate with air and keeps the air sacs in the lungs filled with air. Back then, physicians didn’t know how to treat it so the prognosis was more touch and go. JFK and Jacki Kennedy had lost a baby a couple of years previously from respiratory distress. (For years, all I knew about my rough start in life was that my lungs weren’t fully developed and that I had the thing that the Kennedy baby had.) To make a long story short, it wasn’t clear that I was going to survive. My mom’s OB/GYN, Dr. Clark was talking to her while she was in the hospital. I imagine that she was alone. She had 4 other children at the time so I am guessing my dad had them at home. Seeing that she was scared and tearing up, he squeezed her foot as he left the room. My mom has spoken of this event many times over the years so I know this little gesture meant a great deal her.

So when I told my mom about this she said, “You need to write about this in your blog!”

So hospital physicians out there, we like the foot squeeze. We give it two big toes up!

Tags Breast Cancer, Coping with cancer, Family

Categories Facts, Feelings

A slight delay and moderate inconvenience

July 18, 2012 //

Surgery has been delayed until 2pm today. there was a scheduling snafu on the part of my surgeon’s office. So, after considering moving me to a private hospital room for the rest of the morning, I was given the option of going home and coming back at 1pm, which I gladly accepted. I appreciated the fact that Dr. Beatty came to explain the situation and to apologize in person, rather than making someone else deliver the bad news. Can you imagine how upset people must get?

John and I talked in the car on the way home about how well we have been coping with my cancer, as a couple. Despite the increased stress, we’ve been bickering less. I hope we are able to maintain this but I know it will be harder as time goes on. In my experience, being civil to one another is often hardest for families after the acute medical crisis has been resolved. They stop holding their breath, relax a little, and then the emotions can come crashing down. John and I decided to be mindful of this and to try hard to forgive each other and ourselves, when and if this happens.

Being angry and upset requires a lot of energy. I’m devoting so much right now to coping with my illness and functioning as a parent, wife, and professional. I don’t have enough left over to have a hissy fit. Anxiety does find its way in. But honestly, waiting for a delayed surgery this afternoon is not as stressful as waiting for Dr. Beatty’s phone call with my PEM results last night.

Dr. Beatty felt pretty apologetic. He even patted my shoulder, which I would guess is surgeon’s version of an outpouring of emotion. I tease because I love. I am in awe of anyone who has the emotional control, concentration, and technical skill required for surgery. Plus, I find a more professional, calm, straight-forward, and sincere apology to be more reassuring than what some of the health providers do. A few of them, physicians included, over-apologize and do so with distress in their voice. Not to mention the fact that they are apologizing for doing their job, which may result in my feeling some discomfort. The reasons I don’t like it are because their distress, makes me feel a little distress, and when accompanied by all of the apologies, communicates a lack of confidence. The first time I encountered this was with the radiation oncologist who diagnosed my cancer. Obviously, she knew what she was doing because she found my main invasive cancer tumor through a diagnostic mammogram, despite my breasts’ vampire-like resistance to getting their pictures taken using standard imaging techniques. She kept apologizing while she was doing the core biopsy, when she injected the lidocane and with each time she collected a tissue sample. It wasn’t as if I was wincing or anything or that it was really all that bad. I fought the temptation to tell her, “I think you are a very good physician and I appreciate your attention to my comfort. Please don’t apologize so much. It makes me think it should hurt and that you think you are doing something wrong. I understand that you are doing your job.” I don’t think it would have gone over well, though. She needs to hang out with a dentist or something. “There’s going to be a stick. Okay, now we’re done.”

But back to Dr. Beatty’s apology. Who knows? Maybe he’ll throw in an extra during surgery today. Maybe he can give me a lightening bolt shaped scar. I could use it professionally, as a rapport-builder with my patients who love Harry Potter. What a great way to build my business back up after I go back to work full-time!

Categories Facts, Feelings

Never so happy to hear that I’m having surgery

July 17, 2012 //

This is going to be quick because I need to get ready for surgery in the morning. That means packing my bag and no food or liquid past 7 pm, which is in 10 minutes!

The reason for this packing frenzy? Dr. Beatty just called and let me know that there were no areas of cancer shown by the PEM scan. So the lumpectomy is as scheduled for tomorrow?

Now that still means that there will be another excruciating wait for a pathology report to confirm this news but for now I am happy and relieved.

I’m going to pack and take my “special shower,” with Hibiclens tonight and then another one tomorrow morning.

Nightie night, everyone and I will update tomorrow or the day after.

Thanks to all for your prayers, positive vibes, calls, texts, and emails.

Categories Facts, Feelings

Getting panini’d radioactive medicine style!

July 16, 2012 //

Confession: I did not make up the expression, “getting panini’d” as a reference to getting a mammogram. I think it’s a popular joke in the mammography world, but it bears repeating.

I had my PEM scan this morning. It took 3 1/2 hours. During the first hour, I had to wait for an hour, sitting relatively still after a combo sugar/radioactive I.V. was placed. Then there were two hours of pictures taken, while I sat in a chair. How luxurious, you women who have participated in more standard mammography might think. No, I was sitting in a chair but there were still those lovely plastic boob-squishing plates on the machine. And each picture takes 7 minutes to take. (At least I didn’t have to hold my breath for each picture like in standard mammography.)

I am keeping my fingers crossed. Dr. Beatty will call me after 5pm tomorrow to tell me the results and whether my second lumpectomy will go as planned for Weds. I am wishing for the best but if a mastectomy is recommended, I hope at the very least, that recommendation is based on what is actually seen using the PEM scan instead of based on a lack of information given by the other scanning technologies.

Tags Breast Cancer

Categories Facts

No wonder people lose weight on the Adkins’ diet

July 15, 2012 //

As you know, in preparation for tomorrow’s PEM scan, I’ve had to follow a SUPER low sugar diet today. Bleh! On the upside, I had almost no processed food.

Here’s what I had today:

Breakfast
2 eggs scrambled with Swiss cheese
black coffee

Lunch (I could have had one of the approved green vegetables but I was too lazy to cook)
Small handful of almonds
A few slices of cheese
Water

Dinner
Salmon filet poached in plain water (wine, lemon slices, onion, etc. were not allowed), with a few chopped almonds on top. I love salmon but I overcooked it a little plus I usually season it with spices, onions, etc.
Steamed green beans (actually the beans were really good)
Water

(Meanwhile, John ordered Indian food for himself and I smelled all of these delicious spice from his food.)

P.S. As a funny side note, I noticed that peanut butter was on the list of okay food but I don’t know how any body would combine it with any of the other foods unless you were to melt it over tofu or something. Maybe people just eat it by the spoonful out of the jar and imagine that it is on a sweet crunchy apple.

Categories Facts, Feelings

A bit of good news

July 13, 2012 //

There was another possible concern raised at the medical case conference, which was ruled out today by a good old fashioned mammogram. (I have decided to call the state of the art positronic emissions mammogram (PEM) that I am having next Monday, a “fancygram”.

Bear with me, because this is going to require a little background explanation. When I had a biopsy last May, they inserted a tiny titanium clip into the biopsy site. This way, if the site is cancerous there is a marker there that helps the surgeon and radiologist find the site. And if it is benign, the fishy looking but benign clump of cells will be marked for future routine mammograms so you don’t have to keep getting biopsies on the same site.

On the morning of surgery, a radiologist placed a wire in my breast and used ultrasound to make sure she placed the wire according to the location of the clip. However, during surgery, the clip was no longer visible so the surgeon used the wire as a guide. He was not unduly concerned about it but enough to tell us. But then the pathologist didn’t locate the clip either in the excised tissue. Now apparently, these clips can get lost on occasion and it’s not something to get hugely worried about in and of itself. However, someone at the case conference pointed out the possibility, though unlikely, that the tissue that was excised was not the right tissue and it just happened that Dr. Beatty excited tissue with tumors in it. He/she recommended that I have another mammogram to make sure that the clip was out. And by the way, mammography has not had trouble “seeing” metal as opposed to the other imaging problems. Today, I got to see the metal markers that the surgeon placed as well as earlier pictures of the various wires and clips.

The clip is not in there. Hooray!

Categories Facts

Girls on parade

July 12, 2012 //

Well, the girls are going through another round of assessment before surgery. When we last met with Dr. Beatty last Monday, he seemed frustrated with the lack of complete information he’d gotten from my MRI, diagnostic mammogram, and ultrasound. On Tuesday morning, he left me a message sounding mildly excited about a suggestion he’d received at case conference earlier in the morning. Yes, my breasts have been presented at a case conference, which means that my cancer is no longer boring. The case conference was attended by a number of physicians who work with breast cancer, surgeons, radiologists, radiation oncologist, medical oncologists, etc.

I called him back and he told me that one of the recommendations was that I do a positron emissions mammogram (PEM). If this sounds a little like a PET scan, that is not an accident since PET stands for positron emissions tomography. I’m sure my physician would correct me but I’m going to say it’s basically a PET scan of my breasts. The main advantage of this technology is that the clinical trials (it is in stage III clinical trials, which is the last stage by which a drug or technique is tested and if the results are positive, becomes part of standard medical practice), have shown evidence that it is particularly suited to pre-menopausal women, with dense breast tissue, and hormone responsive tumors. Sound like anyone you know?

My understanding is that the other imaging techniques have taken “pictures” of the structure of the tissue and the form of the cells. PEM actually takes a picture of differences in the rate of glucose metabolism (rate by which sugar is broken down and converted to energy) across the breast tissue. Since cancer cells metabolize more quickly than noncancerous cells, they can be “spotted” in the picture because they are shown in a different color (or shade of black/white/gray). This is my understanding and it is somewhat tenuous. My grasp of nuclear medicine and cellular biology are kind of limited.

So they can control my sugar intake during the procedure, I need to follow a strict diet for the 24 hours prior to the procedure-meat, nuts, cheese, butter, peanut butter, and non starchy vegetables. There’s stuff I think would probably be okay like black coffee but it’s not on the forbidden or okay list so I’m not going to chance it. Before the procedure, they will inject me with a solution of glucose and radioactive stuff. Then I sit quietly for an hour. Then they take pictures And as an extra bonus, I get to sit in a comfy chair for the entire procedure. Huzzah!

I know that one consequence of this is that they might find more stage 1 or stage 0 cancer that they didn’t know about before. My thought is that it is better to know about this so that we can do something about it. Fortunately, the specificity and sensitivity of the PEM is high. That means that the false positive and false negative rates are low while the true positive rate is high. Okay, that was not the clearest explanation about something in my area of expertise–measurement. But I’m in a hurry for another medical appointment so this will have to do for now.

So the big PEM day is next Monday. Wish me luck!

Categories Facts

Putting on the mental brakes

July 11, 2012 //

Okay, the potential mastectomy and subsequent reconstruction idea is kind of freaking me out. I had a little trouble sleeping last night and woke up early today thinking about it. So I’ve decided to try to get back to my original coping plan, which is to focus on one step at a time. Next week is another lumpectomy. I’ve been asked, “Why the rush?” Well, the short answer is that the longer I wait, the harder it will be for Dr. Beatty to find the contours of the original lumpectomy. This will make it much easier for him to remove the correct tissue. Remember, the junk cells they are after now have not been spotted by mammography, MRI, or ultrasound. So these contours will serve as a very important guide to him.

After the surgery, there will be another pathology report. I will also receive the results of oncotype testing soon afterwards. At that point, if Dr. Beatty is still concerned and recommends a mastectomy, I’m going to take some time to think it through and consult with my other physicians about how the other treatments may or may not address any of these concerns. As far as reconstruction goes, I know that it is optional and I know it’s not a walk in the park to get it done. I won’t know for sure how I would feel about it unless faced with the decision but I would probably opt to do it. I support any decision a woman makes on this but I’m dealing with enough in my life right now. I’m disinclined to take on my body image at this time. But we’ll see.

Oh no, I started thinking about the mastectomy again even though I said that I was going to concentrate just on the next step and not borrow trouble. I have a full work schedule today so that will help distract me. Also, I have a massage scheduled for tomorrow. Aaah.

Categories Facts, Feelings