Protected: What’s cooking?
When my brain is in frenzy or fatigue mode, I frequently find myself knowing related facts but missing the little part of my brain that is capable of interpreting it all and making conclusions. Here’s how it worked yesterday.
1) I am in pain.
2) I have Percocet for pain and Valium for muscle spasms.
3) I don’t have muscle spasms.
4) I’m taking Percocet.
4) The Percocet is making me really anxious.
5) Valium is used to treat anxiety as well as muscle spasms.
Therefore, hmm, I wonder if anyone’s commented on my last blog post?
I actually don’t need the Percocet today because I’m feeling a lot better. But now I know that I have another resource in case I needed later. Also, now that I know that Percocet makes me anxious, I can use other non drug strategies to help for the TRAM surgery.
Aah. I’m going to stop worrying so much and do some good couch sitting today interspersed with laundry, cooking, and going for a walk. But for now the couch calls.
Couples will say, “We’re pregnant”, but they don’t say “We have cancer.” For the record, I hated the phrase, “We’re pregnant.” “We’re expecting a baby.” That’s fine. There’s only one person who is pregnant. I would never want to have missed out on the experience of pregnancy, but I’ve got to say that most of it from a physical standpoint was terrible. This was not due to a bad attitude on my part. I believe this blog attests to my positivity in the face of adversity. I very much wanted to get pregnant, especially since the first almost year long period that we tried to conceive a few years before, was unsuccessful. Every pregnancy is different but I was beyond fatigued, nauseous, and throwing up until I was 5 months pregnant. I remember taking a short walk across the Indiana University campus and having to sit on a bench for a couple of minutes because I’d gotten motion sickness from walking. After I hit the 5 month mark, I was fatigued, my brain was foggy, my legs ached if I stood still for more than a minute, and I had acid reflux unless I slept upright in a reclining chair. John was ecstatic to be a dad and was wonderful most of the time. It was a stressful time for both of us, though. We hadn’t settled down to a geographic area and John was really sick of moving around the country after different academic positions. He really wanted to go back to Seattle. There was also anxiety about the health of the baby and becoming parents. There were times, when John’s anxiety and stress got the better of him. He once complained that I was walking too slowly (at 8 months pregnant), twisted my arm into going hiking with his parents (I was 8 months pregnant. I slept in the car, in the 90 degree heat, with the windows and doors open), and he once asked me when I was going to start making money. Yes, I am making him look like an a-hole. I also acted like an a-hole from time to time maybe even more frequently than he did. But I did feel, whether fairly or not, that it was his job to “be the better person” because I was bearing the load of, well the child-bearing.
So I have cancer. It impacts the family. My husband has a lot of care-giving responsibilities that he hasn’t had before. He’s got to deal with his own fears about my health as well as his fears that he does not take care of me well enough. (He did have the courtesy this time to get sick before my surgery instead of afterwards.) Our friend, Michelle, who is a psychologist who specializes in treating cancer patients and their spouses, told me that cancer is as hard or harder on the spouse. In many ways I can see how my disease has infiltrated my family and larger social network. So one could say, “We have cancer.” After five surgeries, countless blood draws, meds, radioactive substances, shots in the butt to “shut down my ovaries”, “We have cancer” sounds a lot like “We’re pregnant.” I have cancer. It’s me.
This reminds me of the show, Thirty-Something when the character, Nancy had ovarian cancer. She got involved in a support group and got kind of carried away with a friend she made in the group. The friend was saying things to the effect that having cancer was cool. Nancy was spending a lot of time away from her husband and kids. When her husband, Elliot, complained that their son, Ethan missed their mom, she said something to the effect, “You don’t know what it’s like to have cancer.” Elliot’s response was something like, “No, but Ethan knows a lot about what it’s like to have a mom with cancer.” He actually made a nice little heart felt speech and woke Nancy out of what was depicted as a somewhat self-absorbed reverie. I remember agreeing with his point when I watched the show and empathizing with her.
It is times like these when I am not feeling well but still don’t look or act “sick enough” that I feel this pull the most. I’d like to say, “My eyes are down here” and be defined by the cancer because I feel a little overwhelmed by the expectations of my family and of my job. With my husband, there’s only so many times I can say, “Cut me some slack, I’m being treated for cancer.” It’s true that it’s harder for me to keep an even keel, bite my tongue, and otherwise behave like a mature person. But I still have the responsibility to try my hardest to do so, just as I expect from him.
It’s a tightrope walk and we’ve mostly done a really good job. But I worry some. The next surgery is going to be a lot harder. I’m going to need help getting up and down from bed and the couch, I’m guessing for several days. I know that we’ll get through it but I still feel anxiety about the whole thing.
Oh and did I tell you that increased anxiety has been a side effect of taking Percocet for pain? I’m hoping today is the last day I need to take it.
I was so distracted by grogginess and blogging that I didn’t notice that I once again have cleavage! Yay!
As I mentioned earlier, the surgeries went fine yesterday. One of the surgeries was a delay procedure and it is designed to eliminate blood flows up to the abdominal area so that all blood flow comes from above the area. (I know that there are medical directional terms but I can’t figure them out.) The reason for this is that blood flow to the breast comes from above. In the abdomen the blood flow from below is a lot stronger so Dr. Welk made two small and relatively shallow incisions to my abdomen to cut off blood supply in that direction. That will make the flow from above stronger, which will reduce the chance of complications when the tissue is moved to my breast.
The other procedure was the placement of the tissue expander. See below for photos of deflated and expanded tissue expanders. They come in different shapes and sizes but all look like they have a yolk in the middle. When it’s implanted, it’s filled up a little bit with saline solution but since they don’t want to torture women, they don’t fill it all at once. So there needs to be a minimally invasive way to fill it incrementally in the weeks following surgery. The yolk is a magnet that it used to find the port into which the saline is injected. Dr. Welk says he uses a device like a stud finder (I suggest “babe finder”) to locate it. One of the pictures shows the tubing that is attached to the syringe to fill up the breast. So why am I eager to fly? Because the metal yolk sets off air security alarms! I have my very own “Device Identification Card”, signed by Dr. Welk to prove that my breast means no harm to the people of Earth!
In the mean time, I am resting and also trying to figure out how to pad out my bra on the right side a little. I thought I was really smart and organized when I ordered a smaller breast form. Dr. Welk said he’d fill up the expander about half way. I guessed that half would be about an A cup and then further guessed at the size of a breast form. I considered just waiting and getting some of those “increase your cup size” inserts at Target, but I figured that I’d end up lumpy and lobsided. To make a long story short, I’m more like a B cup so the breast form is too big. It is also shaped differently than newly leavened breast. When I put the breast form in, I was about a size G on the right side. Plus, it just looked weird because the breast form angles differently than my breast. I can’t explain it without showing a picture and I’m not going to put a photo of my breast on this blog. Let’s just say that since skin from the top of my breast was removed that now that it is filled, it appears to be defying gravity, especially once particular area, resulting in a major googly eyed effect. I suspect that this effect will not go away until the TRAM procedure, during which Dr. Welk will add some skin to my breast from my abdomen. I’m hoping that he avoids using the skin decorated with my pregnancy stretch marks. The guy is all about aesthetics so I’m sure he will.
So now you know how the expander looks. As to how it feels, it feels like I have a water balloon right below my skin, which is basically the truth. If I tap on my breast with my finger, it sounds like I’m tapping a Tupperware container. Maybe I can push on it to “lock in freshness” or practice Morse code or something. Finally, pain-wise I am doing okay so far. I took a couple of Percoset (not at the same time) yesterday but today I have switched to Advil combined with Traumeel, a homeopathic pain reliever that is actually evidence-based. (I have long been leery of any kind of homeopathy, and remain so as a general rule but this one looks like the real deal. Check it out for yourself here.)
I’d like my breast sunny side up, please!
I’ve got a busy day today. It’s actually what used to be a normally scheduled day but I will bill more hours today than I did for either of the two weeks since I returned to work. This was not the plan but as you may recall, I had major cancellations during those weeks.
I am happy to report that despite my busy day, I started it off with 20 minutes of meditation, a glass of green tea, a 30 minute long walk around the neighborhood, and a fruit/nut bar that I made that contains 2 tablespoons of flax seed meal. I realized that just by scheduling myself so that my first patient is not until 9:30, allows me a lot of time to get self care stuff done without having to get up at the crack of dawn. I am much more of a morning person, too so this plan works better for me than waiting until after dinner time. By then, my natural inclination is to sit on my butt.
I did some testing this morning with a cutie pie of a 6 year-old. I haven’t done any testing for about 7 weeks and it was fun. I’m home now for lunch and perhaps a short nap before heading back to the office at 3pm to see a couple of kids for therapy. Tomorrow I have a lighter day and then I’m off for the rest of the week.
Protected: Pity Me
My mom is awesome every day but it is worth special mention today because it is her birthday. She was born on the very same day as another spicy Italian beauty, Sophia Loren. Unlike Sophia Loren, my mom didn’t star in films, some wearing a garter belt and bustier. I do have to say that she absolutely rocked a Puccini-esque print mini skirt and false eyelashes when we were kids. We have a picture of my mom in this outfit (she also wore a fall well before the hair extensions era). In the wrong hands, this ensemble could have been tacky. But she looked downright glamorous all the more impressive since her six children, aged between 3 and 14 years are also in the picture. And we do not look glamorous. We look like we are a lot of work.
My mom has a lot of energy. She often tells me, “I don’t know how you do it” referring to my career and family life. I am convinced that what she did was much more difficult. She went beyond normal mom stuff. My mom sewed some of our clothes, made us stuffed toys and dolls, did crafts with us, kept a huge garden, volunteered at school, sang at church, and much much more. My mom is also so organized! I remember waking up each morning to our lunches and morning vitamins all laid out on the kitchen counter. And she hasn’t stopped organizing. And every time I visit the yard looks fantastic and the house is clean. She’ll say, “Oh, my house is so dirty.” That’s when I feel like I should never have her to my house again. If you think your house is dirty…
But the best things about my mom are that she is loving, fun, generous, and a fabulous grandmother. She keeps track of all of us kids still as well as all of the important event in our life. And she is the only person in my life who thinks I have a beautiful singing voice. (She hears what it could have been like if I’d taken lessons and practiced, which is loads better than it actually sounds.)
Happy Birthday, Mom!
I’ve had an EXTREMELY light schedule since I came back to work. This is in part by design and also due to cancellations for testing. I usually have only about one cancellation a year for my testing services but as fate would have it, I’ve had one per week for the last two weeks, which is extra stinging since I haven’t been making any money due to my medical leave. Nonetheless, I have been trying to treat the extra time as a precious resource rather than a source of disappointment and anxiety. Consequently, I took a walk this morning around the neighborhood.
My walking route was not set but I knew that a visit to the coffee shop, Bird on the Wire would be in the earlier part of the walk. On the way to the coffee shop, I saw two girls, one about 9 and the other about 5, waiting for the school bus. It was busy at Bird so I was there for awhile. When I left, I saw that the girls had walked to the street corner. I said, “Good morning, girls.” The older girl’s face started falling ever so slightly. “Are you okay?” I asked. Then Ashley (not her real name), the older girl crumbled into full on cry face. “We missed the bus. We need to be at school. We’re trying to walk there. We are lost.”
I tried to calm them down and found out that they were sisters and that they were responsible for getting themselves out the door on time in the morning. This morning they decided to watch a movie and they lost track of the time. I asked Ashley if she knew her parents’ phone number. “No and I don’t have my phone. They took it away and I have to pick up dog poop to get it back!” (I sure hope those parents give that girl her cell back if they are going to put her in charge of getting she and her sister to school every day.) I asked if she knew where she lived. Both girls gave me directions but I couldn’t really follow them. Then Ashley said, “We can’t go home. Our parents told us it is our job to get to school on time.” I explained that their parents would want them to be safe and not trying to walk all of the way to their school (this is what they were trying to do and they didn’t know the way). Ashley also asked, “Do you have a car?” I told her that I did but that although I would never hurt them, their parents would not want them to take a ride with a stranger.
Both girls felt terribly that they would be breaking a rule by being late to school. The kindergartener, Kelsey (not her real name), said “I’m going to be on the lowest part of the teacher’s chart!” Her sister, felt more responsible being the older girl. “My teacher is going to be mad at me for being late. I’m in 4th grade!” (Many kids live in fear of 4th grade. There’s a big emphasis on being responsible.) I tried to reassure them that I thought their teachers would be understanding. Their distress was heartbreaking and charmingly earnest and innocent all at once. At one point, the little one started jumping around a little, playing and her sister said, “You’re not supposed to play. We did something wrong!”
This is when I realized that I had encountered myself at ages 5 and 9. About two minutes after asking the questions about where they lived, etc., I said, “I have a better idea. I’ll call your school.” As I dialed, little Kelsey said to herself, “I hope they answer, I hope they answer.” I talked to the receptionist who put me on the phone with the principal, Christy Collins. Christy and I know each other from work I’ve done professionally with some of the students at the school. She is a relatively new principal to that school and she is terrific. We arranged for me to wait with the kids while she drove to pick them up. Even when I told the kids that Ms. Collins was going to pick them up, they were still a bit unsettled. Ashley kept saying, “I feel so lost.” Kelsey said, “I wish I could fly in the sky so I could see where our school is.” The girls looked happier when Christy picked them up. I explained to her that they were very afraid of getting into “big trouble” and that Ashley was taking her responsibility as the older sister very seriously. Christy thanked me and they went on their way to school.
The girls weren’t literally lost. They’d really only walked about 10 yards from the bus stop. There were people around to help. But they felt lost. It turned out they were new to Seattle and had moved from a rural town, which is quite a bit north of here. Kelsey informed me, “We moved here so I could go to kindergarten.” She had also told me that she’d gone to preschool and when I asked where she told me that she was “home schooled” for preschool. I told her that I had also been “home schooled” for preschool. (I didn’t go to preschool.) I’m wondering whether she thought there were no kindergartens in in her town.
There have been times in my life when I felt lost when I really wasn’t. When the cogs in my brain churn away at anxiety so ceaselessly that it is hard not to feel that something is horribly amiss and that I can’t see away to fix it. These can be risky times as well. Like the girls, who were so afraid of getting in trouble for not getting to school, my brain can get so focused on the subject of my anxiety that I can minimize the risks of other decisions. My guess is that Ashley had been told many times not to get a ride with a stranger but she felt so panicked about the situation and not carrying out her “big sister” responsibilities that she lost sight of the bigger picture. I was glad to have been able to help these girls, to help them problem solve, to stay safe, and to remind them not to ride with strangers! I don’t feel lost now but I may feel that way again sometime in the future and I will try to remember these girls, that I can solve many problems and when I can’t, I can ask for help.
I continued to be grateful for all of the wonderful care I have received from others. Cancer is one of those, “it takes a village” kind of conditions and I have greatly benefited from my treatment by so many villagers. My professional specialty, ADHD, is also one of those “it takes a village” kind of conditions. I am gratified in my work for all of the support that the various villagers, teachers, therapists, parents, physicians, occupational therapists, tutors, etc offer to the kids I see. However, it is unusual for all of the villagers, in the case of kids with ADHD, to be on the same page. People with ADHD often have behavior problems that are irritating, challenging, and sometimes unsafe for others. Even without behavior problems, it is hard for others to understand the inconsistency of their performance, why it is so hard for them to develop good organizational habits and such. To add to the confusion, people with ADHD do not have trouble attending to or persisting on tasks that are enjoyable. It looks like they “can do it when they want to” and for boring or frustrating tasks, they just need to gut through them like the rest of us. But “gutting through” the frustrating, the uninteresting, and the mundane is extremely difficult. Since people are individuals with different strengths and weaknesses and ADHD can vary considerably in terms of symptom presentation and severity from person to person, it can look very different from person to person.
Often kids with ADHD get blamed for their problems even though they are primarily due to their very serious and chronic disability. People with say, “He should be able to do x and y. He shouldn’t still be doing z.” All the “should” tells you is that a child hasn’t reached your expectations. It also often tells you that you are frustrated with the child and perhaps not sure how to help. Unfortunately, this state of affairs sometimes leads to giving up and concluding that the kid is just “bad” or “lazy” or some other harmful label.
I have been treated for breast cancer since May 25th. No one has blamed me for my disease. And I don’t blame myself either but I do know that I put myself at higher risk for the disease by being overweight on and off for so many years. Nonetheless, people have been motivated to help me and to treat me with compassion. People don’t give themselves ADHD. It is largely genetic and the non-genetic factors such as poor prenatal care and early malnutrition are not ones over which kids have control. I’ve seen kids as young as 4 being blamed for their disability. I wish these children could more frequent enjoy the same love and compassion as a 46 year-old lady with breast cancer.
My Eyes Are Up Here 