Got a call from the Londonderry Dana Farber office and the first opening with a female oncologist is June 1st at 11:00 a.m. Not as quick as I would like, but with the holiday weekend approaching, it's not a surprise. I might be able to venture to the beach on Memorial Day weekend, assuming the sun ever again shows up here! And if the stars and planets all line up in the universe, we might actually move in to our lake house early enough that we would be there when treatment starts.
And another mission accomplished - I picked out a new sectional sofa with chaise and ottoman which will be ready for delivery by June 9th. Another small miracle as most of the custom orders take 6-10 weeks. And I negotiated free delivery. And stayed within the price range I was expecting for just the sofa and chaise. Yeahhhhh!!!!!
And I drove 154 miles today, from Milton, MA to Bedford, NH, to Nashua, NH, back to Bedford then to Acton, MA.
I'm just a little tired right now...LOL!!!
Michelle
Thursday, May 19, 2011
Wednesday, May 18, 2011
Oncologist visit at Dana Farber and dinner
I met with Dr. Wendy Chen at Dana Farber today and she seemed very bright, articulate, and had thoroughly reviewed my records. Her recommendation is 4 rounds of dose-dense adriamycin and cytoxin (AC) every two weeks, followed by 4 rounds of dose-dense taxol.
This protocol is a little different than what my KC onco had in mind. She was suggesting the same drugs, but every 3 weeks instead of every 2 weeks. We talked about the steroid use and she says I will need them for just two days each round with the AC, and just one day with each Taxol treatment. If I tolerate the Taxol well, I may not need any steroids after the first round.
We talked about using Abraxane instead of Taxol, and she said that the risk of neuropathy was greater with Abraxane, plus it is not as well proven as Taxol. It makes sense to do what I can to minimize the neuropathy,
So, the next step is that I will get a call from the Londonderry satellite clinic, they will schedule an appointment, I will get an echocardiogram to be sure my heart can tolerate the adriamycin, and I plan to have a port inserted. It's possible I could have my first infusion by the end of next week.
After my appointment we met up with the nurse who referred me to Dana Farber. She, Ann and I had a wonderful dinner in a French restaurant - Gaslight - and talked about Sandy's women's health clinic and how much she loves the Northeastern nursing students (Ann's class). Two very dynamic women!!!
Michelle
This protocol is a little different than what my KC onco had in mind. She was suggesting the same drugs, but every 3 weeks instead of every 2 weeks. We talked about the steroid use and she says I will need them for just two days each round with the AC, and just one day with each Taxol treatment. If I tolerate the Taxol well, I may not need any steroids after the first round.
We talked about using Abraxane instead of Taxol, and she said that the risk of neuropathy was greater with Abraxane, plus it is not as well proven as Taxol. It makes sense to do what I can to minimize the neuropathy,
So, the next step is that I will get a call from the Londonderry satellite clinic, they will schedule an appointment, I will get an echocardiogram to be sure my heart can tolerate the adriamycin, and I plan to have a port inserted. It's possible I could have my first infusion by the end of next week.
After my appointment we met up with the nurse who referred me to Dana Farber. She, Ann and I had a wonderful dinner in a French restaurant - Gaslight - and talked about Sandy's women's health clinic and how much she loves the Northeastern nursing students (Ann's class). Two very dynamic women!!!
Michelle
Tuesday, May 17, 2011
Plastic Surgeon today, Oncologist tomorrow
Today my friend Ann and I made the trek to Boston for my visit to the plastic surgeon at Brigham & Women's. We arrived early and parked on the roof of the garage - this is one busy medical complex! We walked to Dana Farber and handed over the medical records that were requested in advance of tomorrow's appointment, then went to lunch. We lingered for a while as my PS appointment was at 2:30. We had to go back to the car because I had not grabbed the records for the PS...duh...then we proceeded to B&W and located the PS's office on the "pike". Actually, finding things was not too difficult but that might be because Ann knows her way around these facilities. I completed the usual required paperwork (some day we really will have digital medical records!!!), waited just a few minutes and I was called in.
Within 5 minutes or so, the doctor and his "entourage" - I suspect a "fellow" PS and the doctor's nurse, came in, we talked for a couple of minutes, and I got my 60 cc fill. No muss, no fuss, and we were out of there. I go back in 3 weeks for the next fill.
Tonight Jack cooked us a fabulous dinner of pork loin stuffed with spinach and asiago, broccoli with cheese sauce and Ann made a great salad. Now we are settled down to watch Dancing With the Stars and The Voice.
It's quiet here and all is good.
Michelle
Within 5 minutes or so, the doctor and his "entourage" - I suspect a "fellow" PS and the doctor's nurse, came in, we talked for a couple of minutes, and I got my 60 cc fill. No muss, no fuss, and we were out of there. I go back in 3 weeks for the next fill.
Tonight Jack cooked us a fabulous dinner of pork loin stuffed with spinach and asiago, broccoli with cheese sauce and Ann made a great salad. Now we are settled down to watch Dancing With the Stars and The Voice.
It's quiet here and all is good.
Michelle
Friday, May 13, 2011
So much has happened!
Geez, we really rely on our blogs to keep people updated, and it was really a bummer that Blogger has been down for at least two days, maybe longer!
We went to Pittsburg, had some fun in the casino and spent the night there. Rick's meeting was cancelled just before we arrived, so we were able to leave earlier on Tuesday and we drove to Fishkill, NY, about 4 hours from our destination.
We met up with Elaine from our diabetic blog around 10:00 on Wednesday, then drove to Christine's and arrived about lunch time. We were all pretty happy to be out of the car, although I have to say mom was a really good traveler. I turned on her favorite music (thank you XM Radio for Willie's Roadhouse) and handed her a netbook with a slot machine game. And we didn't hear from her for hours except for when she was singing along with the music or telling us about hitting "a big one"...lol.
She was definitely a little confused at Christine's, which was only the 5th different "bedroom" she'd experienced in a week. The first morning she showed up in our room before 6:00 and said she didn't know where she was, so that was an early wake-up call for us. She settled down a bit and was actually pretty good until today.
Yesterday we got the required pre-admission physical done by the doctor she was seeing before we brought her out to KC. Well, actually, it was his nurse practitioner Pam, who was absolutely wonderful. Every time I've brought mom to that office, someone has spent at least an hour with us! Not sure how they make money, but they do not short-change their patients one bit. Pam ran some labs (metabolic panel and CBC) and just happened to call me back around lunchtime today with the results that everything was absolutely perfect. She also recommended that we take her off the Aricept, because it doesn't seem to be doing much. And because mom no longer needs to take ANY meds, we don't have to pay the extra $650 a month for assisted living. Between the cost of the drugs and the extra charges related to assisted living, we are saving almost $30,000 over the next 3 years!!! We'll keep an eye on her and if we notice her memory is deterioting any faster, we'll reconsider.
Today was a rough day - mom was very upset and crying, thinking that we were "leaving her behind". She cried from the moment we left Christine's. We couldn't convince her that she was really "home", despite trying to explain that we were all going to be here together. And then, her roommate Mary came to get her. And took her away for the rest of the day. Right now, I think Mary is a godsend! She shepherded mom all day from meals to activities, including the standard Friday afternoon "social hour" with live music, then back to the apartment. Mom was smiling and happy by the time we left. Mary is a leader, mom is a follower, and I am hopeful that this relationship is going to work.
We got almost everything unpacked and organized, set up her tv, and left her apartment with just 1/2 box of stuff that didn't need to be there. We still have some things to do because we left a few things behind until we could see what the apartment could accommodate. Luckily, Mary had already provided a fully-furnished living room and dining area. So most of mom's furniture with the exception of the bedroom is not needed at the moment. The maintenance technician will hang all her pictures and pretty much anything we want on the walls for her. Joe was a sweetheart and very helpful.
She's sleeping in her own bed tonight and I can finally relax a little!
Michelle
We went to Pittsburg, had some fun in the casino and spent the night there. Rick's meeting was cancelled just before we arrived, so we were able to leave earlier on Tuesday and we drove to Fishkill, NY, about 4 hours from our destination.
We met up with Elaine from our diabetic blog around 10:00 on Wednesday, then drove to Christine's and arrived about lunch time. We were all pretty happy to be out of the car, although I have to say mom was a really good traveler. I turned on her favorite music (thank you XM Radio for Willie's Roadhouse) and handed her a netbook with a slot machine game. And we didn't hear from her for hours except for when she was singing along with the music or telling us about hitting "a big one"...lol.
She was definitely a little confused at Christine's, which was only the 5th different "bedroom" she'd experienced in a week. The first morning she showed up in our room before 6:00 and said she didn't know where she was, so that was an early wake-up call for us. She settled down a bit and was actually pretty good until today.
Yesterday we got the required pre-admission physical done by the doctor she was seeing before we brought her out to KC. Well, actually, it was his nurse practitioner Pam, who was absolutely wonderful. Every time I've brought mom to that office, someone has spent at least an hour with us! Not sure how they make money, but they do not short-change their patients one bit. Pam ran some labs (metabolic panel and CBC) and just happened to call me back around lunchtime today with the results that everything was absolutely perfect. She also recommended that we take her off the Aricept, because it doesn't seem to be doing much. And because mom no longer needs to take ANY meds, we don't have to pay the extra $650 a month for assisted living. Between the cost of the drugs and the extra charges related to assisted living, we are saving almost $30,000 over the next 3 years!!! We'll keep an eye on her and if we notice her memory is deterioting any faster, we'll reconsider.
Today was a rough day - mom was very upset and crying, thinking that we were "leaving her behind". She cried from the moment we left Christine's. We couldn't convince her that she was really "home", despite trying to explain that we were all going to be here together. And then, her roommate Mary came to get her. And took her away for the rest of the day. Right now, I think Mary is a godsend! She shepherded mom all day from meals to activities, including the standard Friday afternoon "social hour" with live music, then back to the apartment. Mom was smiling and happy by the time we left. Mary is a leader, mom is a follower, and I am hopeful that this relationship is going to work.
We got almost everything unpacked and organized, set up her tv, and left her apartment with just 1/2 box of stuff that didn't need to be there. We still have some things to do because we left a few things behind until we could see what the apartment could accommodate. Luckily, Mary had already provided a fully-furnished living room and dining area. So most of mom's furniture with the exception of the bedroom is not needed at the moment. The maintenance technician will hang all her pictures and pretty much anything we want on the walls for her. Joe was a sweetheart and very helpful.
She's sleeping in her own bed tonight and I can finally relax a little!
Michelle
Michelle Asked Me To Pass This Along
Apparently, "parts" of Blogger are now working again. Today, May 13th, she and Rick are moving her Mom into her new assisted living facility. That will probably be an all day affair. And then time for some relaxation tonight!!!
David
David
Monday, May 9, 2011
Spent the night in Indianapolis....
...near the airport. I got an early wake-up call as mom woke up a bit disoriented. I could hear her muttering "I don't know where I am" so I called out to her and she settled down for a few minutes. But by then, I was awake. Plus the air traffic began at 6:00 or so, it's a noisy area.
Yesterday's travels were uneventful. We had a brief traffic jam near Terre Haute in a construction area. Otherwise, it was pretty smooth sailing. The trailer does a number on the gas mileage - we are averaging just 15 mpg, we usually get about 24-25 on highway trips. Gas prices are in excess of $4 a gallon and my car needs premium, but what are you going to do? So we are working our way through the morning showering/cleaning up routine, we'll have breakfast here then continue on to Pittsburgh. We should arrive there mid to late afternoon.
Getting closer to the final destination!!!
Michelle
Yesterday's travels were uneventful. We had a brief traffic jam near Terre Haute in a construction area. Otherwise, it was pretty smooth sailing. The trailer does a number on the gas mileage - we are averaging just 15 mpg, we usually get about 24-25 on highway trips. Gas prices are in excess of $4 a gallon and my car needs premium, but what are you going to do? So we are working our way through the morning showering/cleaning up routine, we'll have breakfast here then continue on to Pittsburgh. We should arrive there mid to late afternoon.
Getting closer to the final destination!!!
Michelle
Sunday, May 8, 2011
We are heading east
It's a good Mother's Day, even though I have shed a few tears today. I am leaving behind some very dear friends, a few breast cancer "sisters" and a home that was as close to my dream house as I will likely ever have. If we could just put it on a truck and roll it to the waterfront somewhere, it would be perfect. It's just weird to think that I will probably never step foot in that house again.
Yesterday, my good friend and BC sister Donna, and I went to the annual Komen Luncheon for Survivors. It was quite an event, with close to 1400 survivors, co-survivors, and friends in attendance. Donna launched this event more than a decade ago when she was actively involved in the Komen Foundation, with about 150 attendees. It's just incredible how it's grown. Susan Komen's daughter was the keynote speaker and it was very inspirational.
I remember my first Race for the Cure with Donna and John, about 14 years ago. Rick and I have walked with them almost every year since then. I was always doing it in honor of Donna and other survivors and in memory of those like Bev Noecker who lived with Stage IV for 20 years. I could never have dreamed that my name, too, would be written on the backs of my family and friends. I know I'll be thinking about the 30,000 participants who are likely to be at this year's KC race in August. By comparison, the Boston Race is tiny...last year there were just 7500 people. Depending on my health, we may try to do the Boston walk. Last year it was at the end of September and I walked with my kids, my son-in-law and my grandson. Our "Hall A$$ For The Cure" t-shirts were the hit of the party and we may submit one for this year's Boston's best team t-shirt contest.
As my friend Paula says, "it's all good!"
Michelle
Yesterday, my good friend and BC sister Donna, and I went to the annual Komen Luncheon for Survivors. It was quite an event, with close to 1400 survivors, co-survivors, and friends in attendance. Donna launched this event more than a decade ago when she was actively involved in the Komen Foundation, with about 150 attendees. It's just incredible how it's grown. Susan Komen's daughter was the keynote speaker and it was very inspirational.
I remember my first Race for the Cure with Donna and John, about 14 years ago. Rick and I have walked with them almost every year since then. I was always doing it in honor of Donna and other survivors and in memory of those like Bev Noecker who lived with Stage IV for 20 years. I could never have dreamed that my name, too, would be written on the backs of my family and friends. I know I'll be thinking about the 30,000 participants who are likely to be at this year's KC race in August. By comparison, the Boston Race is tiny...last year there were just 7500 people. Depending on my health, we may try to do the Boston walk. Last year it was at the end of September and I walked with my kids, my son-in-law and my grandson. Our "Hall A$$ For The Cure" t-shirts were the hit of the party and we may submit one for this year's Boston's best team t-shirt contest.
As my friend Paula says, "it's all good!"
Michelle
Thursday, May 5, 2011
Plastic surgeon today and bought my cranial prosthesis...
I saw the Plastic Surgeon this morning and everything looks very good. I got a fill which didn't hurt at all, and he told me he had originally filled me with 200 cc's. So I think I'm 2/3 of the way to the capacity of the tissue expanders, although they will probably overfill them a bit because radiation takes its toll.
We picked up records at the breast surgeon's office, went to the pathology lab and signed the release so they will send the tissue block to Dana Farber, then after going to Brian Joseph's we went to lunch.
After lunch, the painter came by and we picked a new exterior house color (I'm having a hard time caring a whole lot...lol). Then I was off to the bank for a couple of cashiers checks, the doctor's office to pick up some paperwork for my mom, then to WalMart to get some prescriptions refilled, then met a friend/breast cancer survivor and her friend for drinks and dinner.
I wonder why I am tired tonight! Gonna chill out and watch American Idol now!
Michelle
Wednesday, May 4, 2011
Breast surgeon visit and scurrying to get ready for the big moves
First, an update on yesterday's breast surgeon visit...everything looks good except that I have some fluid buildup under my left arm. I have been able to feel some swelling each day as it gets later and Dr.Balanoff asked if I wanted to get it drained. I said yes, but the Radiologist can't do it until Friday afternoon, when we will be loading the trailer with mom's stuff, and I need to provide a distraction for her. I'm thinking sitting in a doctor's office is not quite the distraction I had in mind so that won't work. Then Joe and I had an "ah ha" moment and remembered that we do have a hospital five minutes from the house, associated with my hospital in Overland Park. So when Dr. Balanoff's nurse called back, I asked her to see if she can set it up at the local hospital. It's not absolutely necessary that I get this done, it will eventually be reabsorbed. But it's a nuisance and I might as well get it drained if it's possible. Hopefully she'll call back this morning and I can just run over there in my copious free time and get it done.
While we were at the hospital yesterday, we picked up all my medical records, films, etc. that I will need for Dana Farber. Tomorrow I'll get the Plastic Surgeon records and then I'll have almost everything related to breast cancer. Rick and I went to the PCP and picked up mom's records (I have most of my stuff) and I had an A1c test. It's the only lab that hasn't been performed at least once in the last 4 months and I figured it would be good to have a recent one done. My last one was in December.
Later in the afternoon we went back to the MO/KS state line area to pick up my car, which now has new tires, front end alignment, a new shock, and an oil change. It is ready to roll, uHaul trailer in tow. We are leaving Sunday morning with the goal of getting to Pittsburgh on Monday night. Rick has a customer presentation on Tuesday that he needs to do "in person." So we need to travel a little less than 900 miles in two days, which should be doable even with mom. We'll need to make frequent stops for stretching legs, bathroom stops, etc. Normally Rick and I can knock out 700 miles in a day, but that won't be happening with mom and a uHaul in tow!
Last night I took an hour and cleaned out all the clothes from one of the closets upstairs. I filled one small plastic bin with "keeper" stuff, and two 30-gallon plastic bags with clothes for donation. There is another closet in the guest room that I started last night. I'm trying to be extremely selective with what I am keeping. Right now, it's a little easier because everything is miles too big and I'm not feeling emotional about clothes. I'm keeping a few things that look like they might fit once my tissue expanders have reached their capacity, but mostly if things are too big, they are going into the donation bag.
Yeah, it was an insanely busy day!
Today we are going to Mom's to finish the packing. I also need to take her to a walk-in clinic for a physical. Her new facility requires one within 30 days and I couldn't get her into her doctor here, so I'll take her to a Walgreen's Clinic. No big deal, just another hoop. And the admissions director from her new place is calling at 1:00 to interview mom. I will need to be there with her to "interpret" as she doesn't do well on the phone. After all this, I just need to scan and email the health records and she will be ready to be admitted to her new place next Friday! How the heck did I pull this off? Does anyone out there need a project/implementation manager, because I think I've got mad skills!
And tomorrow's agenda includes a visit to the Plastic Surgeon where I hope to finally get a fill (and a little shape), pick up those records, then stop by the Pathology Lab and sign a release and pay for shipping a tissue block to Dana Farber. Then Rick and I will head to Brian Joseph's, a local salon run by a breast cancer survivor. A generous friend gave me a gift certificate and I will probably purchase a wig so that I am "ready" for the inevitable chrome dome. My son suggests I should just plan on "owning" the bald look, but I'm not sure I can handle it. So I'll be ready for wherever my emotions take me. To be honest, the idea of wearing a wig in the heat of summer is not that appealing. I've never been a hat person, even in sub-zero weather, and a scarf on a bald head just screams "cancer victim" to me. I won't know how I'll feel about this until I get there...one day at a time.
Michelle
While we were at the hospital yesterday, we picked up all my medical records, films, etc. that I will need for Dana Farber. Tomorrow I'll get the Plastic Surgeon records and then I'll have almost everything related to breast cancer. Rick and I went to the PCP and picked up mom's records (I have most of my stuff) and I had an A1c test. It's the only lab that hasn't been performed at least once in the last 4 months and I figured it would be good to have a recent one done. My last one was in December.
Later in the afternoon we went back to the MO/KS state line area to pick up my car, which now has new tires, front end alignment, a new shock, and an oil change. It is ready to roll, uHaul trailer in tow. We are leaving Sunday morning with the goal of getting to Pittsburgh on Monday night. Rick has a customer presentation on Tuesday that he needs to do "in person." So we need to travel a little less than 900 miles in two days, which should be doable even with mom. We'll need to make frequent stops for stretching legs, bathroom stops, etc. Normally Rick and I can knock out 700 miles in a day, but that won't be happening with mom and a uHaul in tow!
Last night I took an hour and cleaned out all the clothes from one of the closets upstairs. I filled one small plastic bin with "keeper" stuff, and two 30-gallon plastic bags with clothes for donation. There is another closet in the guest room that I started last night. I'm trying to be extremely selective with what I am keeping. Right now, it's a little easier because everything is miles too big and I'm not feeling emotional about clothes. I'm keeping a few things that look like they might fit once my tissue expanders have reached their capacity, but mostly if things are too big, they are going into the donation bag.
Yeah, it was an insanely busy day!
Today we are going to Mom's to finish the packing. I also need to take her to a walk-in clinic for a physical. Her new facility requires one within 30 days and I couldn't get her into her doctor here, so I'll take her to a Walgreen's Clinic. No big deal, just another hoop. And the admissions director from her new place is calling at 1:00 to interview mom. I will need to be there with her to "interpret" as she doesn't do well on the phone. After all this, I just need to scan and email the health records and she will be ready to be admitted to her new place next Friday! How the heck did I pull this off? Does anyone out there need a project/implementation manager, because I think I've got mad skills!
And tomorrow's agenda includes a visit to the Plastic Surgeon where I hope to finally get a fill (and a little shape), pick up those records, then stop by the Pathology Lab and sign a release and pay for shipping a tissue block to Dana Farber. Then Rick and I will head to Brian Joseph's, a local salon run by a breast cancer survivor. A generous friend gave me a gift certificate and I will probably purchase a wig so that I am "ready" for the inevitable chrome dome. My son suggests I should just plan on "owning" the bald look, but I'm not sure I can handle it. So I'll be ready for wherever my emotions take me. To be honest, the idea of wearing a wig in the heat of summer is not that appealing. I've never been a hat person, even in sub-zero weather, and a scarf on a bald head just screams "cancer victim" to me. I won't know how I'll feel about this until I get there...one day at a time.
Michelle
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