The Next Phase

Today I had my follow up appointment with the oncologist.  He started me on tamoxifen.  (He also wants me to start taking baby aspirin to counter balance the increased risk of clotting from the tamoxifen.)  I'm to come back in a month if I'm experiencing side effects.  

I also spoke to the gal who was supposed to set me up with PT for my shoulder and a personal trainer.  She made an appointment for me for tonight.  The cancer center has an arrangement with an assisted living facility (that coincidentally Blair used to work at) to use their fitness center two nights a week.  The trainer showed me how to use the machines and I tried them all and used the recumbent bike and a recumbent stepper.  I can go Monday and Friday afternoons.  And I can do yoga Tuesday, Thursday and Saturday mornings.  That seems like a good start.

It's also time to stop eating like I'm bulking up for an endless winter.  I decided not to worry about it too much while I was in treatment, but it's time to get serious.

Snowed In

Well, the weathermen kept going back and forth as to whether our part of CT was going to get walloped or no snow at all. We're getting walloped.

My sister posted on Facebook that the wind moved her dog a half foot to the side wheb she took him out. Dumbledore wouldn't even go near the back door when we opened it and encouraged him to go out. Blair took him down to the garage, and shoveled him a little area just outside the garage door - the snow was taller than he was (at least a foot). 

This is reminding me of the blizzard of '96. The state was shut down for two days and I was convinced I would go into labor and not be able to get to the hospital. At least we never lost power. Today though, the wind is blowing so hard that the family room is pretty chilly despite the fact that the heat is on.

This morning, Blair and I got up early-ish (8) to hit the Hallmark store. We got tissue paper and bows which I was out of, but they had no wrapping paper, which I am running low on. It was all only 40% off though. I'm bummed because I'm finally running out of the paper I got for 50% off when Alex was small.

Then we hit the supermarket. What a zoo!! Blair got on line at the service desk to return the Coke he bought by mistake. He was supposed to get Diet Coke to go with the Mentos we gave Daniel for Christmas. I stopped at the hand scanner kiosk and they were all dead (there were only three units in the display). I ran to the other end of the store and there was an out of order sign on the kiosk there. Oh noes! We were going to have to wait on a long line to get out. 

We shopped and got on one of the self checkout lines behind at least 7 or 8 people. I'm leaning on the cart and I turn around to say something to B and he's not there. A little while later, he turns up with a working hand scanner (I guess those three units charged up and he got the last one). We start scanning like mad and packing up our reusable bags, figuring that at least when we get to the head of the line, we'll get out fast. But it got better, the gal who watches over the self service line saw us scanning. She was surprised and checked to make sure it was working OK. The she took us out of line to her station and processed our order, and bang zoom - we were done!

On the way out of the store, we popped the scanner back in the display, so hopefully someone else got lucky too. Once we were in the car, I kept telling Blair that he rocked and that he was "da man". On the way home, I realized I should have grabbed a bunch of scanners from the out of order side and popped them into the empty display. But maybe the woman told someone and they got them working again.

We got home and watched Despicable Me with Daniel. Then I made cheese sticks (wrap string cheese in refrigerator dough and bake according to the directions on the roll package). We all enjoyed them. Blair gave me one of those jewelry armoires (he got a really good deal on one with plenty of drawers, and my current box is overflowing) and I spent the afternoon and evening sorting through the stuff in my old jewelry box, pairing up earrings and such. It was loads of fun (I love sorting and organizing and loved seeing stuff I haven't looked at in a while). Blair and I watched a bunch of old NCISs while I did that.

The hospital massage therapist called to cancel tomorrow's appointment. She may reschedule for later in the week, since she missed last Monday too, due to illness. I probably won't have radiation either. (There's a LOT of snow out there already and it won't quit until tomorrow evening.) I was planning to take a "vacation" day from radiation on Wednesday or Thursday and going into NYC with Dan (who finished all the stuff he owed the English teacher on Christmas Eve!) and Blair, but now I'm thinking I should see if they can take me early in the morning instead, since it'll be 4 days off by the time I get to the hospital.

I felt pretty energetic today (although I did nap for a bit during the day). Maybe it won't take too long to recover my energy once I'm done with the radiation? That'd be nice.

I hope everyone is warm and cozy!

Blair got a job offer today! The money isn't great, but it's close to home. Before this it was looking like he'd have to take a 4 month maternity replacement gig in a town at least 45 minutes away, plus working weekends for a place that is planning on opening a second building in the fall, and might want him full time then. It's a great relief. We're taking a little money out of his 401K to cover COBRA for a few months, and when he's eligible to join their plan, we can switch to a less expensive plan because I'll be done with treatment.

I'm feeling OK. Mom, a sister and I got together Monday and Tuesday to bake cookies. It really tired me out. Tuesday when I met with the doctor, she said that it's right about the time I should be feeling fatigue from the radiation (speaking of radiation, did you guys hear they want to open up Chernobyl to tourists, how crazy is that?) and that it would get worse before it got better (in maybe a month or so.) I'm starting to get some skin irritation too, and need to be more rigorous about using the cream she prescribed (and doing it more often).

Although it was worrisome (to say the least) to have Blair unemployed, I've been glad to have him with me during the day. He drives me to treatment every day (it's nice to have company). I'm out and about more than I was when I was home alone - and I'm sure I'd sleep more and get dressed later too.

Blair's aunt Sybil passed away (his Dad's sister), she was 91. I'm >so< glad Daniel and I visited with her before we left California - we had a nice lunch and went mini golfing. We're going to visit his parents this weekend. I've adored Sybil ever since I first met her after we got engaged. She offered to throw a shower for me (and invite his parents' friends) and it was lovely. She also adored my husband which was a very large point in her favor. :-)

Dan never told us what he wanted for Christmas, so we went ahead and got a few things for him. He's thinking of changing his look a little and so we got him a couple of henley shirts and a vest (he saw a guy on TV wearing that and liked it). I finished up my shopping tonight on Amazon - I was even able to buy itunes gift cards there! Little teachers' gifts and something for the boys to give Blair.

Dan's almost caught up with the English work. His teacher has been so understanding and willing to work with him. He was missing a couple of assignments - he'd had trouble understanding what to do and was too shy or afraid to ask her.

Blair was really down on himself after he lost his job, and his usual sunny personality is returning. I'm glad to have my usual hubby back.

Sister Study

When I received the diagnosis, it made me glad I'm participating in the Sister Study. They took dust samples from my house, tons of blood (they did the genetic test but didn't tell me the results), and a pretty thorough family history when I enrolled. I figure my sis and I probably have some genetic thing they haven't discovered yet. I hope my stuff helps them.

Then again it could be environmental. The house we lived in from 3rd grade until I was in college was built on a former apple orchard - pesticides maybe?

Radiation Update

The fatigue is no worse than before I started the radiation, when it was stress that was tiring me out. The last couple of nights I've slept poorly (and I had to wake up early to go to the Survivor's Breakfast yesterday morning).

I've been having my "packing dreams" again. The set up varies but there's always a bunch of stuff that needs to be packed, cleaned up, organized or otherwise dealt with, and whenever I think I'm done, I turn around and there's more stuff. Last night I was packing up my belongings at the end of a cruise and apparently I had rooms all over the ship (for which I was having trouble finding the keys.)

Yesterday afternoon was the second day in a row that I went into Daniel's room to check on his homework progress and he was asleep. Later I checked on him again and he got weepy, telling me that he was feeling overwhelmed. I asked if he was depressed and he said probably. I asked if he wanted to talk to someone (and I'm meeting with the gal who arranges services at the cancer center about meeting with a therapist myself), he said he wanted to. He's got a lot of stressors right now, with the change from his cozy magnet school, and the upheaval from changing schools and then changing some classes, plus my illness under it all. Even though on an intellectual level, we all believe I'll be fine, our subconciouses are probably sitting in a corner trembling and crying.

Coming down the hall to hang with us in the family room while he worked helped. He spoke with the teacher today at lunchtime, he's OK to finish the spark notes tonight and meet with the teacher tomorrow at lunch with his questions about the essay, and then he'll have the weeked to finish it. He came home in a really good mood and feels more in control of his schoolwork.

The yoga teacher knew something was off with me today, and pretty soon it was all pouring out of me. You know, if something happens to me, Blair will be OK, he's a grown up and he can take care of himself - but I worry about my boys. They both love me so much.  And Alex doesn't have a father he can turn to - he and Blair care for each other, but it's not the same as having had a father who's been involved his whole life. My poor babies.

Indignity

I've decided that we have to go to Mardi Gras in New Orleans this year, because I can now take my top off in front of anyone without flinching.

Today was a nice day. 


We took Dumble to the vet (he got shots, but he needs steroids for skin inflammation and to have his teeth cleaned and some removed. Maybe they have a payment plan for the teeth cleaning?) 


I had my yoga class at the hospital from 10 to 11 or so (there's chatting afterwards), then I went to my local salon and had a mani-pedi (shimmery dark red - ooh la la) and an eyebrow wax. 


Then there was a presentation back at the hospital (called Look Good ... Feel Better) where I got a goody bag of makeup and stuff and a cookie. 


Then I ran downstairs for my 2pm radiation treatment and was able to move my appointment for the Friday after Thanksgiving to right after yoga so I don't have to make 2 trips to the hospital. 


And now I'm home with all my guys and my puppy.

Today was my second day of radiation and tonight was the BC support group. The gals at the group were very emphatic that I should be slathering on the lotion I was given samples of, especially since I am fair.

Yesterday afternoon, Blair and I were puttering around the house and I started to feel shaky and emotional. It was weird because my conscious mind was not nervous at all. Afterwards I calmed down but felt pretty wrung out. (I fell pretty wrung out most of the time actually).

After my treatment, I chatted a moment with the lady whose appointment is after mine (we recognized each other from yesterday.) She said even when things are going well, and the outlook is good, it will hit you what you're dealing with.

There's job I could have if I were willing to relocate to Chicago right now (assuming I could pass the security clearance). With Blair losing his job, I felt really pressured to take it. I'd been stewing about it for a couple of days, and Blair and I were sitting on the couch together (me computering and he reading), and I started sobbing. I can't go through it again. It was hard enough the first two times (and I had my aunt for the last one). I need my family and they need me. 

Yesterday, Daniel sat next to me for a bit, leaning against my shoulder as we played Bookworm on my ipod together. He told me he was so happy I was home, and I kissed the top of his head. Even if I wasn't sick I don't think I could do it, it sucks the life and energy right out of me and I have nothing to give to my job.

Radiation

My radiation starts next Monday - every day for 6.5 weeks. I'm to expect fatigue and possible redness and or swelling.

It's 3.7 miles and takes about 10 minutes to get there. :-)

This is the same hospital Daniel was born in and my grandmother was a volunteer there for many years and was once their volunteer of the year.

It's a really nice place - the cancer center is very restful and reassuring 

And it turns out that my brother has participated in the Swim Across The Sound (from Port Jefferson on Long Island to Bridgeport) and has swum the whole way a couple of times. The Swim is what paid for the SWIM Center and pays for a lot of the services for patients (like the classes and massages).

Good News

I got a call from the oncologist. The oncotype test came back with a very low score for recurrence (8 out of 100). This means there's no need for chemo. Next step is to see him to work out a treatment plan, and get started with radiation.


The additional scan was a bone density scan, for a base line so they can keep track of the density as I take tamoxifen or whatever for the next several years.

Support

There's so much cool support type stuff for breast cancer patients at my hospital. I've been to 2 (very gentle) yoga classes so far, and today I went to a session about post-operative stuff and afterwards to a support group that meets twice a month. The yoga teacher told me about free massage therapy and I'm waiting for the callback from the gal who's setting me up.

The ladies at the support group were lovely.

Oncologist

This morning, a friend stopped by with yummy donuts and muffins and we had a nice chat. She even got to meet my Mom who came to pick me up to take me to the oncologist (Blair met us there, his work is across the street from the hospital). It was wonderful to see my friend and she looks terrific.

I'm still pretty sore from the surgery and plenty bruised up too. I had a bad reaction to the tape and have blisters around the edges of where it was. I now have something to remember when I'm asked about allergies to medications, etc (tegaderm?).

We had a long talk with the doctor - I really liked his manner and personality. He gave us a little biology lesson about cancer and breast cancer in particular, and what they know so far about mine. Unfortunately, they don't have the pathology report from the lumpectomy yet, so there isn't a concrete plan yet. There will definitely be radiation, most probably tamoxifen for several years after my treatment is complete, and there's about it seemed a 40% chance that he will recommend chemo as well. He explained everything very clearly but not at all in a condescending way. I feel really comfortable with him. His office is contacting my surgeon about getting the reports from the lumpectomy when they are available, and there is a test he wants performed on the tumor, if Dr Ward hasn't already ordered it. So it may be a couple of weeks more until we have all the information we need to make a plan going forward.

Mom and I went to lunch afterwards and it was nice to chat (although it was more like verbal diarrhea on my part and listening on hers - thanks Mom!) Now I'm back home with my puppy sleeping by my feet, and I need to call the surgeon and see if I'm allowed to drive and if it's OK to go to the yoga class at the cancer center tomorrow.

Surgery

We were at the hospital from 8:00 till after 5:00. They feel they were able to get good margins when they removed the cancer but won't know until they get the pathologist report on Thursday.

Yoga at the Swim Center

This morning I made it to the free yoga class at the hospital. It was lovely and the teacher (and the other participants) was really nice and sweet. At the end, she recited something while we all tried to meditate, and I felt a little teary. Another gal started to cry (it turned out she'd had to put her dog to sleep last night). I went over to tell her I'd started to cry to (so she wouldn't feel weird) and she told me about her dog, and the next thing I know I'm rubbing her arms and giving her hugs. I felt so badly for her loss.

Another lady, with sparse white hair, was looking at these cute little knitted caps the teacher had (kind of a flapper style with a big knitted flower) and admiring a tan one. When she asked how much they were (she wanted something warmer than a ball cap for the winter) the teacher told her folks at her church had knitted them and they were free. By this time, there's just me, the teacher, the crying lady and her husband, and the hat lady. The teacher was asking about the surgery, and saying she'd be thinking of me, and then offered me a shawl that was also knit by ladies from her church. It's a cream tweedy yarn with earthy shades of pink and lavender (it's really lovely), and it came with a poem. She put it over my shoulders and had the other ladies touch my back while I closed my eyes and she read the poem. I got a little teary again, but it was very sweet. Then they all wished me luck, and reassured me I'd be calmer once I had the surgery and the results and a plan.

Afterward, I went to the mall, picked up prescriptions at Target, had lunch and picked up a couple of CDs and a new pair of cozy PJs. Then I went to a nail salon and had a mani-pedi and a little massage. I feel quite a bit calmer than I did this morning. We're going to have to get up pretty early tomorrow to get to Greenwich by 8. The xanax helped last night, I had a good night - hopefully I'll sleep tonight as well.

Dumbledore is much better, he's off the meds and back to his old self, frisky and silly. He was savaging a rubber chicken this morning. (I love when he has something in his mouth and whips his head back and forth - he's such a nut). He's also been extra cuddly lately.

Freak Out

So I burned my hand on the oven rack last night (no more pain by this AM, but a small blister, so nothing major) and the next thing I know I'm having a full blown freak out, crying and shaking, right before Blair had to leave for chorus rehearsal. I think I'm most worried about the financial situation - and it's not completely dire, at worst we'd have to put most of our stuff in storage and rent until we figure out where we're going next, which we could swing on Blair's salary and my unemployment. But it felt last night like I was poised at the edge of a deep dark hole.

Blair comforted me and I knew I could have asked him to stay home, but this is his one leisure activity and he needs a break (and it felt nice knowing I could ask him.) By the time he got home, I felt better - I think it helped to let off some steam.

This morning I had a chat with the hospital. I had thought they were billing me because they didn't have the correct insurance info for September. Turns out all the bills were for events in August and they'd already been submitted to the correct insurance, so they were for our share of the bills. Ugh.

I had to run down to Greenwich this afternoon to drop off my films with my surgeon. (It took about an hour each way with traffic). They gave me the lowdown on where and when, and when to stop eating, etc. The upcoming surgery is getting more real.

I had lunch with a friend this afternoon - we ended up chatting for like 2 and a half hours. That was really nice.

I have to be at the hospital at 8AM on Friday for the thing with the dye to find the sentinel nodes. Then I get to wait around until noon or so for the actual surgery, and we'll be going home right afterward. I asked if I could take a xanax that morning, but she said no, but that they'll give me some sort of sedative before the thing with the dye (that's actually bothering me more than the surgery). The whole idea icks me out.

She offered to schedule me tomorrow for the dye thing, but I wanted Blair to be there with me without having to take the time off, so that's why everything is getting done on Friday.

After spending yesterday in my pajamas, and napping a lot, I was out most of the day (between lunch and the drive to Greenwich) so there was no napping today. I was thinking of taking a xanax at bedtime tonight (and tomorrow night too) so I can hopefully sleep well and avoid napping tomorrow. There's a yoga class at the hospital at 10 tomorrow that I want to go to - I've got to stop vegetating on my couch all day.

Sloane

Today's appointment didn't effect me the same way. The doctor at Sloane was less warm than the doc in Greenwich (she even rolled her eyes at one point). But, there were a few things that I hadn't heard before (or that hadn't really penetrated) so it was worth it from that point of view.


We're going to keep the surgery appointment with the doctor in Greenwich. So I'm having a lumpectomy on October 8th. Depending on whether or not there's lymph node involvement and the pathology results (either or both), I will need chemo.


What did sock me in the gut this afternoon was making the appointment with the oncologist for the following Wednesday (the pathology results should be back by then).

I had a lovely insurance scare the other day. The Greenwich doctor's office called to tell me that the insurance wouldn't cover the visit. I called Aetna, and they told me that my coverage was terminated on September 1st and that I should contact my erstwhile employer to see why. (Back in August, we had paid COBRA enough to cover us until his insurance kicks in on October 1st.) I was totally panicking as I called my HR contact. Turns out my former employer switched carriers as of 9/1 and they missed me somehow when the new cards got issued and packets were sent out. She assured me she would take care of it and that my coverage would be retroactive to 9/1. She should have a policy number tomorrow, and I can call various providers and have them resubmit to the new company. I had also received an $1100 bill from the hospital, so it's a real relief to find out why.


I had to give Sloane the wrong insurance info this morning (since I don't have the new info yet), and I'll have to call them too with the new info when I get it.

Update

We really liked the surgeon we met on Friday (in Greenwich). She was very warm and nice and has an amazing reputation. We made an appointment with her for the surgery for the 8th of October. Tomorrow, we see the surgeon at Sloan Kettering.

Yesterday was a bad day. I'm usually floating on de Nile, but I really couldn't after the appointment. I felt shaky and weepy all day. Just going to the grocery store left me exhausted. It seems better this morning.

Second Opinions

Today we're going to Greenwich to talk to a surgeon recommended by a friend of Blair's who's an OR nurse at the same hospital for a second opinion. On Monday we're seeing a doctor at Sloan Kettering that was recommended by my brother's MIL (who had BC).

After we get our second opinions, I'll probably schedule the lumpectomy with the doctor here in Bridgeport. If the margins and lymph nodes are clear, I'll have 7 weeks of radiation followed by hormone therapy for several years, but there will probably be no need for chemo (there's a test that will be done on the tumor after the surgery). If the margins aren't clear they'll have to go back in and take a larger area; and if the first lymph nodes they take are effected, they will take more lymph nodes - and I will need more aggressive therapy (ie chemo).

Biopsy #3

Biopsy #3 is negative.  Whew.



So it's "just" one spot of the most common kind of breast cancer.  Next up is a lumpectomy and sentinel node biopsy.  The pathology results from those procedures will determine the course of treatment.


I'm terribly relieved.  If I had cancer in more than one spot (especially in both breasts), I was seriously considering a double mastectomy even with the clean genetic testing.


Biopsy #2 was an intra-mammary (?) lymph node (I guess they aren't usually there?), and #3 was fibro-cystic tissue.  I'm glad they've been so meticulous, but it was scary thinking I could have cancer in three places.

Today's Biopsy

I should have results on Tuesday.