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

Yay, we have found our new place in NH

After a week of back and forth with Realtors, we have finally found our new home in Salem, NH.  It is a little lake house (1144 sq ft) with 900 sq ft of waterfront decking.  The landlord is building a new home and has offered us a 6/15 occupancy, which we can make work.

I have scheduled my appointment with my new oncologist at Dana Farber for May 18th, and I have an appointment with my new plastic surgeon on May 17th.  I'll stay with our friends, Ann & Jack, for a couple of days so Ann can help me maneuver through the maze of medical facilities.  I'll spend the rest of my time getting my mom settled and visiting my kids.  It's likely I will start treatment before 6/15 so we'll have to work out who will be in the best position to be my support when the time comes. 

We have started packing up the "non-essentials" at mom's place.  Joe and I got her kitchen totally packed up today.  Not sure how much room she'll have for stuff that she doesn't really need.  All her meals are provided and I don't think she's used any kitchen stuff for the whole time she's been here. 

And I placed a classified ad in Craigslist to lease our house.  I actually got a call this evening from someone who was already coming to this subdivision tomorrow to look at another rental.  It would be miraculous if we found a serious lessee this quickly, but I guess stranger things have happened.  It's unlikely but not impossible.

So much to do...

Michelle

Update from today's doctor appointments and lunch at Max's AutoDiner

Today I had two doctor appointments - the oncologist first, followed by the plastic surgeon.  The oncologist appointment was fairy uneventful.  We discussed the results of the PET scan, she didn't have the pathology report from the surgery, and we talked about potential chemo regimes.  I asked her about some targeted radiation for the mammary nodes and she explained why it would be dangerous, with possible heart/lung damage.  I told her that I would be moving and going to Dana Farber, and she was genuinely enthused for me.  Too bad she wasn't my onco last year, things may have been different.  I like her a lot and trust her opinions.  She looked at my mastectomy scars and the beginnings of my reconstruction, and she was very pleased and said that she thought I would end up very happy with the results.  For anyone around here who might ever need an oncologist, her name is Dr. Gupta-Burt and she offices in Building D at the Menorah complex, Midwest Cancer Care. 

After the oncologist appointment, we headed to Dr. Cannova, the plastic surgeon.  The first thing he did was remove the left drain...yeahhhh!!!  He took a look at the incisions and they are healing well.  I do still have some bruising on the left side, so he didn't want to do a fill.  The skin is extremely thin and sensitive, so it needs more time to heal.  He suggested I could use a warm compress on the area to increase blood flow, which sounds like a plan.  He told me I could switch to wearing camisoles instead of the compression-type sports bras, which will be far more comfortable.  We talked about the swelling that I am experiencing late in the day/evening and he said it's normal.  He gave me a referral for physical therapy, so I'll have to get that started in the next few days.  I go back next Thursday and hopefully I'll get a few cc's of saline to pump me up.  I'm thinking this is like injecting salty brine into a turkey breast...lol.

Once all the "doctoring" was done, we went to Max's AutoDiner and met up with about 20 or so friends and former co-workers.  I am humbled by the number of people who took time out of their day to come and have lunch with me.  Well, OK, I did pick a pretty nice sunny pleasant day, the first we've had in more than a week!  It was so nice to see everyone and we shared good conversation, burgers and tater tots, hugs and well-wishes.  One of the gals who came had inflammatory breast cancer several years ago, went through all the treatment and has been cancer-free for (I think) more than five years.  Seeing her today, healthy and cancer-free, was very inspiring. 

I've made so many good friends while living here, and I will miss seeing all of you.  But then, with Facebook, Skype and who knows whatever new technology comes our way in the next few years, we'll be seeing each other one way or another.  And besides, I'll be just a plane ride away!

Michelle

It's been a productive day

Hi everyone! I went to the plastic surgeon today and got the right drain removed. Everything is healing nicely and I have to go back next Thursday to get the left drain removed and hopefully get a little fill.  My "little girl" figure is rather amusing and I'll appreciate having a bit of a shape back in a few weeks.


I think I've located a suitable place for my mom, so we should be able to move her back to NH into this place (in Bedford, NH) and hopefully never have to move her again. My kids are going to check out the place and make sure it's the perfect new home for her. Once that's done, getting a place for Rick and I will be easy. There are lots of vacancies and we have a realtor working with one of my sons. They are going to see a couple of placse tomorrow afternoon that look promising, and one is within 45 minutes of all the family, and maybe 10-15 minutes from mom's likely new home.
I have a dear friend who is a Professor of Community Health Nursing at Northeastern and she is very well connected in the Boston medical scene. She contacted an oncology nurse associated with Dana Farber, who called me this morning and we had a nice long discussion about getting treatment through DF. They have a satellite center in NH so I can go to the main DF for designing the plan, then the satellite center will implement. She is also involved in the DF clinical trials so she is going to look at the ongoing trials and let me know which ones I should consider.

I am so very fortunate to have such an extensive support system. There are so many breast cancer patients out there who have to struggle for everything, to get information, for insurance coverage, for a shoulder to lean on, etc. Never before have I felt so loved, cared for and protected.

Please don't worry, I will survive.

Michelle

Time to fight, no time to lose

First, an update on the surgery and how I am healing:  I am doing pretty well.  My incisions look good, the drains are slowing down and I am hoping they can be removed on Thursday, my right arm is almost back to normal and my left arm is getting better.  Some of the numbness is fading and I am starting to feel almost human.  I ventured out to the grocery store this morning, alone, much to the displeasure of Rick.  But this was not against doctor's orders...we needed a few things, I took a small cart so I wouldn't be tempted to get more than I could handle, and I am not taking any drug that would compromise my ability to drive safely. 

I received a call from the breast surgeon's nurse with the rest of the pathology information.  This cancer has a mission and it's going to take every ounce of fight in me to send it into remission.  All my hormone receptors came back negative and the Ki67 (rate of cell division) was 77.  I don't fit the profile for triple negative breast cancer and I don't fit the profile for a cancer growing at this speed - these are supposed to be "young" women's pathology.  Furthermore, metformin is thought to slow down the cell division rate.  And there is thought that it can prevent a recurrence.   My last hope for the metformin is that it partners with chemo to bring a complete pathological response...in other words, put me into complete remission.

When I first talked to my new oncologist, she said she would want me to do four cycles of  Adriamycin and Cytoxin (AC) followed by four cycles of one of the Taxanes.  I hear there is a shortage of Adriamycin, so there is another regimen currently in use... fluorouracil, epirubicin & cyclophosphamide (FEC) and I think this protocol is already used more commonly in Canada.

I've had my research hat on for the last couple of days and learned that there is another Taxane product  (made from the Pacific yew tree) called Abraxane.  Rather than being mixed with a solvent (castor oil) it is bound with nanoparticle albumin.  As a result, there is less likely to be an allergic reaction to the drug.  So there is no need to administer huge doses of steroids in advance of treatment.  And it has a better track record of keeping blood sugars in control than its cousins Taxol and Taxotere.  The results of the clinical study I found stated that the overall response rate was better for Abraxane than for either of the other Taxanes.  In the clinical trials, they administered higher doses of Abraxane than the alternative Taxane, in less time, with less side effects and better outcomes.   I wonder why it's not standard protocol. 

Here's a link for those of you who I know will want to read the information:

http://jco.ascopubs.org/content/23/31/7794.full

Regarding the FEC protocol, I need to do a little more homework. 

I have an appointment next Monday with both the breast surgeon and the oncologist.  While I really didn't want to start treatment until we get out east, I'm not sure waiting is wise.  It might be ill-advised, considering I have an active node still there, with cancer cells multiplying at light speed. 

Michelle

Early pathology report

4.7 cm lesion with 4 of 21 nodes involved, plus the intra-mammary node.  Stage III.  Lots to worry about, including how to get us to the Boston area ASAP.  We need to be close to our family.  Lots to do, not a lot of time to get it done. 

Michelle

Two days post-surgery

I came home yesterday afternoon and am firmly planted in my recliner with an occasional venture out and about.  I was able to take a shower this morning and then Christine and I took a short walk down the street.  It's a beautiful day and the temperature is just perfect. 

I'm keeping on top of the pain with valium at night, meloxicam and extra-strength tylenol.  At this point, I am not sure I hurt much more than I did from the seroma that caught us all off guard.  It was painful and now it is gone. Actually, most of the feeling is gone and is likely to remain so.  How much sensation returns is a good question. 

The drains are a pain, as we knew they would be.  I have to empty them and record the contents each time.  Once the draining slows way down, they can be removed.  That won't happen until a week from Thursday when I go to the plastic surgeon.  We are keeping the drains corraled in some really comfy hoodies that have pockets on the inside.  They are brightly colored and zip up the front.  At $10 each, these things are an ultimate bargain.

Although the surgeon had to remove two levels of lymph nodes, she did not make a separate incision near my armpit.  She was able to get to them without any additional damage, so I am glad that I don't have to deal with that pain (and another drain).

Christine and Rick are taking really good care of me.  And I am thankful for the flowers, cards, phone calls and well-wishes from all of you.

Michelle