Calling all Massachusetts Sisters
Comments
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RTR - I have heard really good things about Winchester. I think some of these satellite BC centers are the best of both worlds - connected to the latest research, but convenient for patients. BTW, love your screen name. My vanity plate is ITROX (meant to be "It Rocks", but most people misread it as EYE TROCKS. Or I.T. Rocks - which isn't so bad since I am in I.T.).
Daisy, I like Worcester too, but haven't gotten to take advantage of having my son there - yet. Maybe more this spring. I want to go to EVO, which is within walking distance of his residence hall. You must be so proud of your son - WPI is a very good school. It also has a game design program, but Russell didn't even apply - doubt he would have gotten in. He's an ok student - has a LD, so it doesn't come easy, but he's smart and funny.
I am finished with surgery (phew! first piece of good news that they had gotten it all with re-excision). I don't meet with MGH team until 4/6, so, yeah, I think just knowing what to expect will help a lot - it's stressful knowing it's coming, yet not really being able to plan anything. I don't know what I'll do about my hair, work, where I'll do chemo, what appointments/tests I'll need before starting. I have found a lot of good info on the bb, but it's different for each person, so you can't really go by that either (except maybe the fact that your hair falls out around day 17.)
Beyond this cancer thing - I started a blog at the end of last year, if anyone is interested - I'm trying to get a following :-)
Lynne
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Lynne, we took my son and his girlfriend to EVO! They are not terribly adventuresome eaters. I enjoyed my meal -- can't remember what I ordered? Maybe something Mediterranean? I also love the Boynton; although, it's more of a bar atmosphere. Sometimes we treat ourselves at Sole Proprietor, delicious but expensive.
I wish that I had splurged and found a nice wig - mine is very itchy and just not entirely me. If you do consider a wig, I would go to Newbury Street as others have recommended. I am thinking about going there soon -- not sure when my hair will grow back from Palbocyclib; since, I also have Alopecia Areata. I wear baseball caps from JCrew and Madewell most days...
Are you getting 2 opinions? One at MGH and one at Emerson? Is 4/6 at MGH? Do you work in Boston or closer to Emerson? Without traffic, it takes me about the same time to get to Emerson and Dana Farber... My PCP is out at Harvard Vanguard, though... I hope that your opinions will be the same if you get 2! (I imagine that would be easier.) I saw Dr. Sajer and Dr. McGrath at Emerson for my second opinion. They were compassionate and thorough. If the treatment plans had been similar, I would have done my treatment at Emerson - I liked the more personal feeling. I will be thinking positive thoughts for you -- hoping the time passes quickly until your appointment on 4/6.
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hello Massachusetts ladies! I just finished my rads last week, so I have reached the end of active treatment. I meet with my MO next week to start Tamoxifen. I'm happy to answer any questions that I can. I live in Holliston, work in Waltham. I'd love to get together with other ladies in the same boat if we could work it out.
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Hi SJacobs, Is the commute to Waltham taxing for you? Whenever I drive south on 128 through Waltham at commute time (AM or PM), I find it very clogged and stressful. My daughter Kate used to go to a full day basketball camp at Bentley several summers -- it would always take an hour to get there from our home even though outside of rush hour it would take at most 30 minutes. I often joke that I would never take a job in Waltham... Maybe it's easier coming from the West or South?
Maybe once the snow has melted (hoping by the end of tomorrow?), we'll all be interested in gathering for a Springtime outing?
Congrats on finishing your radiation! Tamoxifen involved a short adjustment period for me (allergic symptoms?) and then was pretty easy -- headaches and nausea if I didn't eat for a while. Since my oophorectomy, these SE have disappeared. So, they had a lot to do with hormones
I think my back and hip pains have other explanations as well. Hopefully, it will be easy (or easier) for you as well! I am switching to Aromasin on April 1st.Enjoy the sunshine today! Rain tomorrow...
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SJacobs - looks like I am just about two weeks behind you with a very similar timeline and diagnosis!
I'm curious what your (or anyone's) follow up care is. I have a "survivorship" session in two weeks where they explain my plan for the next five years.
Congrats on finishing!!
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Yes! Let's have a gathering. Ha ha Daisy about the snow melting by tomorrow. I host my family's Spring Celebration (aka Easter), and I have already warned my daughters that we won't be having the outdoor Easter-egg hunt.
-Lynne
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So, my RO friend Robin checked in, which was good, because it sort of just dawned on me that I probably would have to meet with Doctors in Concord after meeting with doctors in Boston (for some reason, I figured that I could just transition over to them and start treatment ha ha). She also told me that Dr. Comander is no longer working in Concord (although Emerson's website says differently), and so I'll see Dr. Sajer instead. I have an appt. with her on 4/9. So, more delays - not delays so much as more time passing. I told Robin that I want to get started sooner than later, and she replied, "Everybody wants to "start earlier rather than later" but you really want to start *right* with the right team and the right approach. "
I agree, but I see people on these boards who had her surgery after I had mine, but are starting chemo way before. I know everyone is different, and Robin reminds me that I don't have the fastest growing tumor. To be honest, it's really my late June/early July vacation. Priorities, you know!
Lynne
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Lynne, I hope that you receive similar treatment recommendations on 4/6 and 4/9. I can relate to that feeling of waiting for treatment... diagnosed in October and final (BMX) surgery 4 months later. Once you get that plan, you will feel less anxious... I saw Dr. Sajer twice --- I really liked her.
Your vacation plans are important! I hope that you will be able to schedule everything smoothly.
Still no bare grass in my backyard yet -- you were so right. I had hoped that the rain would wash it all away...
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daisylover, yes, the commute is taxing, but not as bad as if I were going to Boston or Cambridge. It can be done in 30 minutes on say a Saturday morning, but more like 50-60 minutes regularly. Ugh. Driving to Mt. Auburn for chemo was not fun, had to allocate 1 1/2 hours for that.
I got my "discharge papers" with my last RO visit. They want me to visit a doctor every three months, rotating between the BS, MO, and RO. I have a mammo scheduled in September. Needless to say, they would like for me to lose weight and exercise as well. I am meeting with my MO on Monday to get started on the Tamoxifen. I'm hoping for the nausea and weight loss SEs instead of the possible weight gain SE. Lol
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Sjacobs,
I wish you weight loss without nausea! Tamoxifen was a little rough for a few months for me, then easy (no weight-loss for me)... hope it's easy for you. Your commute alone would exhaust me. Can't imagine the trip for chemo. Exercise does boost my energy.
I love that you will be followed every 3 months! I am on an every 6 months schedule -- I will see the NP instead of my MO the first visit... I like the NP a lot. I think that I would feel more comforted by every 3 months
I see my surgeon that same month - no coordination there! If we decide to get together on a weekend, we should meet closer to you, in Central Mass? We could go boating or hike/walk in the woods near you in Hopkinton! http://boatinginboston.com/ I would be a lazy boater. I prefer Boston Swan Boat style, where someone else does the hard work... Or, we could meet at the Natick Mall for food (I haven't been there in a long time)... When it warms up a little, we could meet at Kimball's in Westford (farther from you) for ice cream (they have real food as well) and mini-golf or batting cages JK
http://www.kimballfarm.com/index.shtml I only know museums near Boston. In the Fall,we could pick apples near you! Or, we could all travel to the beach in Rockport and get coffee, food, whatever in town... I am just throwing random thoughts out there. The beach is my happy place Hoping to see grass in my backyard soon... bits peeking out next to the house. I am away this weekend in Philly (warmer climate) and hope to return to green grass and chirping birds!! Did the weather person just say "weekend snow"??? She's confused?
Hope everyone is feeling strong.
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daisy, all sounds good to me. The beach is my happy place.too. I love the Cape.
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Hi ladies! Speaking of the beach, DH and I are on a getaway to Ogunquit, ME this weekend, has anyone ever been there? We go to vacation there every year. It's just two nights - I wanted to do something fun before my life is ruled by appointments. I wanted to go south, but alas, schedules, cost, etc. have us going north. I'm hoping I can pick up some funky earrings and maybe a hat while I'm here. I got my hair cut short on Thursday. It was emotional - not because of the cut, but when I said goodbye to my stylist. I've been going to her, every 5-6 weeks like clockwork for 9 years, and it just hit me that I'll probably not be back for 6-8 months.
Here are my b4 and after pictures:
It looks better IRL (I think), but my youngest was freaked out.
TTYL,
Lynne
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looks wonderful!0 -
Lynne, your hair is adorable. I love Ogunquit -- I took my kids there regularly when they were young to play at Footbridge Beach, walk the Marginal Way, ride the trolley, and of course shop at Perkin's Cove... Hope you found your earrings!
SJacobs, I grew up summering in Chatham near the lighthouse and then moved there in High School. Later, we moved to West Barnstable. My parents left the Cape when my Mom's heart failure progressed. I miss the foggy days and salty wind in my face
Did you see the pictures of the ice floes on the beach in Wellfleet 2 weeks ago? Cool.0 -
Hi, GM ladies.
I had a great weekend, even if I am feeling a bit overwhelmed with house and work stuff - being away and neglecting all that takes a toll.
DH and I had some good 1:1 time. The weather wasn't great - as you all know - we had more snow. It didn't really make it conducive for walking around, etc. But, I was mostly able to forget about BC. I did buy a hat at a thrift store for $2. It's sort of like a baseball cap (with a brim), but has more to the cap (I look horrible in baseball caps even with hair, so this one was good), it's dark blue.
On Saturday night I surprised DH with a cooking class at Stonewall Kitchen. Have any of you ever been? It's not actually a class, more of a demo, and then they feed you what they are making. This one was about pairing wine with seafood. I wasn't sure if they were going to serve wine or not (they usually do not), but they did, so I had my first alcohol in 3 weeks. It was so worth it! It was so much fun, and DH was really happy and surprised, which was good, because I started to worry that he wouldn't be thrilled to be doing that for our dinner. The menu was fantastic - lobster cakes, crab-stuffed flounder, and a lemon/raspberry tart for dessert. If you ever want to plan a fun outing, I highly recommend it. It's a bit pricey, but worth it.
I also got some earrings to commemorate the trip. Slipped into a store on Sunday before we left, and they were 40% off or I would not have bought them (originally $58), they are sterling sliver with blue lapis - hear shaped (I'll take a picture when I get a chance).
The girls wanted to go to Target yesterday after we got home, and I needed some household stuff, so off we went. I also found a cute hat there - they had it in black and olive green - I bought the olive green. It has a bill, not as long as a bb cap, but very rounded like they wear them. I figured it would look cute when I am driving in my Jeep - it would match. It was only $10.
I feel kinda stupid buying stuff when I don't even know for 100% sure that I'll even need them. I've resisted buying anything else for my chemo bag, I'll wait until I have a schedule for that. And, whether I do need it or not, I can always use earrings or hats.
Lynne
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Hey MA sisters, kinda quiet this week. TGIT for me, I am taking tomorrow off. My son will come home from college tonight for the long weekend. Anyone else have any plans?
-Lynne
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we've been invited to Easter Brunch at the Boston Yacht Club in Marblehead. I've never been, so looking forward to it. Plus I don't have to cook and clean up after.
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Sjacobs146 - that sounds nice!
Hubby and I go to AKA Bistro in Lincoln for Easter brunch - it is always great there. I just wish it was supposed to be sunny and seventy!
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readytorock, ironically, I drove past AKA just yesterday on my way home from work. How is it? It is close enough to my office that I could,eat lunch there
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Sjacobs146 - We have been there for Easter I think three times and it has been fabulous. I have not had lunch there. I believe one of the chef's there was from Clio in Boston which is an amazing restaurant. I hope you try it some time!
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Hi there - I have never been to a restaurant on Easter ever, that must be nice! Growing up, my grandmother always had Easter breakfast. Catholics fast on Saturday, so they are hungry after church! :-) My Grammy was Polish, so we have kielbasa and baked beans and of course lots of eggs. My mother took over for my grandmother, then, when my sisters and I were older, we split up the holidays - one does TG, the other does Christmas, and I took Easter since I usually got today (GF) off, so lots of time for a working person to cook and prep. I am no longer religious, but we celebrate "Spring" (and my mother celebrates Easter). My sisters are bringing more of the dishes this year due to the BC diagnosis, even though I feel fine for now!
RTR - did you have your survivor class yet?
Daisy - is your snow gone? We have a lot more bare ground, but still lots of snow. I already told the kids that it will be an indoor egg hunt this year.
Sjacobs, any meal at Boston Yacht Club in Marlblehead sounds wonderful! I think the weather is going to be nice too.
Well, have to go get busy, I probably won't be back on again - maybe not until after my appointment on Monday. It seems like it's been forever coming, and now that it's a few days away, I'm nervous. I felt this way before I got the path results from my lumpectomy - I can just pretend like it's all good until I know better. As soon as I sit down with them and they start telling me about treatment and odds of recurrence, etc., it will be more than real. I'm not a worrier, but I can't seem to stop thinking about other cancer. I feel like this was such a surprise - never expected to be diagnosed with BC (of course, who does? But, some people have family history or risk factors, etc.), that I wonder what else my body is hiding. I worry that I'm one of those "full of cancer" people that they just close up during surgery because there's no hope. I want to be positive, but these are the thoughts that haunt me. I keep telling myself, "don't pay interest on money you haven't borrowed". But, it doesn't stop the thoughts from coming.
-Lynne
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Hi, Lynne - My survivor class is Tuesday. I'm looking forward to hearing what they have to say about my five year plan. As of right now I have follow ups with my MO next week, RO in May, surgeon in June and I think an MRI in July. After that, maybe no doctors for six months or so?? I'm hoping?Today I have a one-hour massage scheduled though the hospital. A nice treat after finishing treatment yesterday!
I hope your appointment on Monday goes well. It is hard not to worry, but try not to too much and enjoy the weekend!
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Well, it was going to be my last post, then I saw this about the hospital where I'll have my treatment:
http://www.masslive.com/news/boston/index.ssf/2015...
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Hi Ladies, me again. I had my MGH Boston appointment yesterday - met with four doctors - 1 BS, 1 RO, and 2 MOs. No surprises really, they are recommending dose-dense AC/T - 8 rounds, 4 rounds of AC, then 4 rounds of T, followed by 33 radiation treatments, and then hormone therapy. I am going to MGH Emerson on Thursday to meet with MO there, and expect that I'll get a date for when I will be starting. One thing they didn't say anything about AND I forgot to ask about was a port - which was weird. I don't know if because they knew I was going to Emerson and 99% sure I would be having my treatment there that I got the short shrift presentation or what. My BS was great, but if she spent 5 min with me I would be surprised. I am wondering what she got to bill for that 5 min :-)
~Lynne
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Lynne -
A port was never brought up to me at any point prior to actually starting chemo. The chemo nurse said that they already had looked at my veins and determined I didn't need a port. They just never mentioned it to me
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Lynne, I did not have a port. Only 4 treatments for me. My MO said that if they had trouble with my veins, they'd do a PICC line. You should definitely ask about the port.0
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Lynne,I would ask about the port. That is a fairly long haul with much chemo. They can begin treatment - I had my first visit and then the port was put in later. It was just a matter of timing
Nel
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I am going to ask about the port - I have horrible veins. I try to give blood regularly, and they always complain about my veins. I've heard that they roll, move, are small, etc. Sometimes I tell them, sometimes I don't, it doesn't seem to matter - I've had them do great knowing with what they are dealing, and I've had them do great when they go in "blind". Anyway, I'm not thrilled about the port, but it sounds like it would save me some aggravation in the long run.
I can't remember if anyone ever mentioned meeting up at the Virginia Thurston Healing Garden (http://www.healinggarden.net/). Has anyone been there?
Lynne
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Lynne, the healing garden looks beautiful! Have you been there? Do you do programs there or just visit the garden?
Hope Dr. Sajer's treatment recommendation tomorrow is similar to the plan from your Boston MO. As I mentioned, I really liked her - hope you do too.
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Hi Lynne, I was very hesitant about the port first but they convinced me to put it in and I never regretted it. I had 4 AC infusions followed by 12 weekly taxols, a blood transfusion, two or three CT scans with dye, and numerous blood draws - all through the port. It worked wonderfully and never gave me any problems. I just had it removed yesterday after having it for 21 months.
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