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

Surgery update

Christine here, Michelle's daughter. I just wanted to let you know that she is out of surgery and in recovery. We spoke to both her breast surgeon and her plastic surgeon, and they said she did great. The breast surgeon did have to take out all of her nodes, because they were too suspicious looking. She also had to take quite a bit of muscle to get around the tumor/seroma site. They were, unfortunately, unable to get at the intra-mammary node; it was too deep and would have required thoracic surgery. This isn't all bad, as watching that node will allow the oncologist to see if the chemotherapy is working, and make changes if necessary.

Thanks to all of you for your support, thoughts and prayers. I know they mean so much to her, and to our family!

PET Scan results

I got a call from the oncologist last night and spoke to my breast surgeon this morning.  The news was not as good as we hoped, and not as bad as it might be.  There is no bone or organ involvement, but there is likely lymph node involvement.  Two nodes in the axillary area show cancer activity, and one in the intramammary area (if you touch the chest area between the breasts, you'd be pretty much right there).  The axillary nodes will be removed and dissected, and I have requested the breast surgeon attempt to remove the intramammary node.  I'm not comfortable leaving it there and waiting until chemo and/or radiation finally delivers the death blow.  There is too much time to inflict more damage from what appears to be an especially aggressive cancer.  She said she'll take it if she can find it easily.  Removing all the intramammary nodes involves thoracic surgery and they just don't do that.  Pretty sure I wouldn't want it, either. 

Just trying to breathe ... 46 hours and counting until surgery.  Really needing my "warrior attitude" to take over.

Michelle

The lymphatic system and why I want to hang on to the nodes if possible; and medical establishment change management

Some of you may be wondering why I would endure a biopsy of my nodes just three days before my mastectomy.  Here's an article that explains how the lymphatic system works:

Importance of Lymphatic System

The "cliff notes" version is that breast cancer tends to spread to the nodes before going elsewhere in the body.  If those nodes are removed and they are all OK, it is now that much easier for rogue cancer cells to escape the "traps" set by the nodes.  Lymphedema is another serious side effect, and is particularly prevalent in women who undergo mastectomies with axillary node dissection.  It happens up to 10% of the time. 

The latest research indicates that full axillary dissection does not increase survival rates in women with tumors smaller than 5 cm, even if they have sentinel nodes that test positive for cancer.  Here's a nice summary of the findings:

http://www.medscape.com/viewarticle/737513

Note the last sentence of this article:  "This study received considerable attention in the media and lay press, and I anticipate that patients will not only welcome the news, but also help drive change to avoid an additional surgical procedure which, for some, appears unnecessary."

I heard an interesting statistic yesterday from someone I know who is extremely knowledgeable about how the medical establishment manages "change" - it takes, on average, about 17 years for a change to work its way through and be wholeheartedly adopted by the medical community!

Here's an example of this that most of us have experienced.  If you have ever had a surgical procedure, you always get the "nothing to eat or drink after midnight" instructions, right?  No clarification, no exceptions, don't eat or drink.  Well guess what, the latest data says that 6-8 hours is plenty for solid food, and 2-4 hours is sufficient for clear liquids.  Anesthesiologists have been trying to get this message across for years; but telling everyone the same thing keeps it simple for staff, even if it's unnecessary.  My surgery is scheduled for 1:00 in the afternoon. I don't plan on getting up at 5:00 to eat so that I can meet the 8 hour rule.  But I will be up by 7:30 and I'm sure as he$$ having my morning cup of coffee, and any other clear liquids that will "float my boat" up until 9:00, with the complete approval of my anesthesiologist.

We all need to ask questions.  We can actually help drive change.

Michelle

Tests, tests and more tests

We are home after spending the day at the hospital. I had the PET scan at 9:00, which is a strange experience. Then we left the hospital and had breakfast, and stopped in Best Buy to kill a little time. We got back to the hospital and had all the pre-op testing, xray, blah blah blah. I've been poked and prodded, dyed and scanned. I should hear the results of the PET later today, with any luck. But...


the only way I can avoid full axillary dissection of my lymph nodes on Monday is to go tomorrow morning to the Breast Center and let them biopsy the questionable nodes. And since I really want to avoid removal of all these lymph nodes if it is at all possible, I'm showing up for the biopsy.

One day at a time...literally.

Michelle

Surgery scheduled...surprise!

Imagine my shock when I got a call from the pre-admission RN who told me I am scheduled for surgery Monday at 1:00! My doctor's office called while I was in the midst of the interview that is conducted in advance of surgery. My Thursday will be taken up by the PET scan at 8:00, then pre-op testing starting at 1:15. Chest x-ray, EKG, some blood work for sure, discussion with anesthesiologist, instructions to prevent MRSA, etc. etc. etc.

If everything goes as planned, I will spend just one night in the hospital  Haven't done that since 10/6/80!


Sooner is better, less time to stress over all this.

Rough Road Ahead

Today has been a whirlwind of doctor appointments and information dumping. I got a call from the breast surgeon this morning and the MRI showed the cancer that we knew was there, plus three inflamed nodes. It doesn't necessarily mean they are cancerous, but they are suspicious. Luckily, nothing seems to be outside the region of the left breast and the right breast was OK. I will have a PET scan on Thursday and that will help detect cancer anywhere in my body, including those suspicious lymph nodes.


I met with the plastic surgeon and...I don't have enough fat for the DIEP reconstruction I was hoping for. I should be thrilled that someone told me I don't have enough fat for anything but "A" cups and I've had lots of offers from potential fat donors ;>) It looks like my reconstruction will be done using tissue expanders. Here's a link that explains the process:

http://breastreconstruction.org/TypesOfReconstruction/ExpanderImplant.html

It makes the whole surgery thing much easier - that's the upside. One or two nights in the hospital and then about two weeks for recovery. You go back weekly or bi-weekly for fills until you get to about the size you want. The implants last about 15 years on average. I guess at that point I won't care.

After the PS appointment, I went to see the breast surgeon. She showed me the MRI and we talked about a surgery date. It will be either next Wednesday, 4/13, or the following Wednesday, 4/20. During the surgery, a port will be installed for administering chemo.

Then she walked me over to an oncologist who is also a radiation oncologist right there at the hospital. I was in her office for 2 1/2 hours. A nurse took my history (please let us have digital medical records soon; I'm so tired of explaining the deaths of my siblings and my dad), took my vitals, weighed me, etc. After a wait, the oncologist came in. She already had quite a bit of information and had read the existing pathology reports. She asked me a lot of questions and answered mine, she spent a lot of time talking about how we would control glucose levels (and really got into the whole diabetes thing). She tried to reassure me that everything I have done so far to take good care of myself would lead to a better outcome than a diabetic who has not been cautious. She knew about the metformin trials and felt that it could still be doing its job of fighting the cancer. She made a point of saying it might be worse if I hadn't been on it. So she recognized that it has benefit. She also noted that diabetics on metformin usually have a good pathological response to chemo.

This is the hard part...her chemo protocol is even more aggressive than the other onco's. She wants me to do 8 rounds of chemo (one every 3 weeks). She gave me options - 4 rounds before surgery, followed by surgery, followed by 4 more rounds; or do the surgery first, then do the chemo. She leans toward doing chemo first because, as she said, she's an onco and it tells her if it's working. But both protocols have the same end results and she understands if I want the cancer removed immediately. I said that surgery first would provide the pathology so we know what we're dealing with, and she agreed with that. There are tumor marker tests and PET scans to determine that the chemo is working. I really don't want this aggressive beast hanging out one minute longer than necessary.

After chemo, there will be radiation - probably 33 rounds. Once I am healed from the radiation, there will be an outpatient surgery to switch out the saline implants for silicone, and I'll probably have my port removed.

If all goes well, I will be finished with treatment by Christmas. Tough to swallow.

Time to arm the battle stations.