Following Robin's Breast Cancer Treatment and Recovery
Tuesday, October 15, 2013
Past the Finish Line
Tuesday, August 13, 2013
Exchange Surgery Update
She is still very sore, especially when she's up and moving. As long as she stays in bed, she feels pretty good. We walked across the street for food earlier this evening and are now hanging out together in our room. Tomorrow may be the day we can try the drive back to Skaneateles, but we will decide that in the morning. Unfortunately, there are two patients here and one caregiver. I am on day 5 of a bad GI virus that will not stop. On a steady diet of Gatorade, I am actually feeling okay most of the time though. We just have to both decide that we feel up to making the six hour drive.
Thank you for your texts and emails. Your love and support continue to help us through this hard time. Apparently our boys have been having an excellent time with Aunt Michelle too.
After making it home, the next step is a post-op appointment in Boston on the 27th. I will update again after that.
Sunday, August 11, 2013
Back to Boston
Robin's sister, Michelle is at our house staying with the boys for the next few days (thanks Michelle!). Everything is in place for them to be well taken care of.
I will keep you posted tomorrow on how she is doing.
Wednesday, July 24, 2013
Upcoming Surgery
Robin's final reconstruction surgery is coming up in a few weeks on August 12th in Boston. She is trying to rest up and enjoy the summer a little before this. Although she feels much better now, she is still fairly tired and doesn't have a ton of energy.
Robin also understands what "chemo brain" is now. Her short-term memory is not great and her thoughts are a little slower. This should all resolve with time though.
Getting past chemo was a huge win and now the end of her treatment is in sight. Thanks to everyone for all of the love and support.
Friday, July 19, 2013
Ride4Alive!
Last Saturday we completed the local charity bike ride. Team Robin raised over $16,000 to benefit cancer survivors! Robin felt good enough to be at the event site to send us off and welcome us back. It was a great day and thanks again to everyone who donated or chose to ride with us.
Monday, July 8, 2013
Friday, July 5, 2013
Final chemo delayed...
Here are just a few pictures through the village of what she got to see on her way to her final chemo cycle earlier today. There were 22 different groups throughout Skaneateles totaling about 128 people! This town and these friends are absolutely amazing!
Wednesday, June 19, 2013
Chemo Cycle #3
Wednesday, Thursday, and Friday will be her low point for this cycle. She spent most of the day in bed with little energy to do much else. This time, however, she will be getting IV fluids at home for hydration that will hopefully help get her through the week. The nausea that she has experienced after the first two cycles is much less this time. And the mouth sores have been much better since her first cycle.
Everyone, including me, likes to tell her that she is "over halfway" or "only one more to go," but when she gets this low it's hard to have that mindset. After the second cycle she said that it was her last and she would be done. Then she pulled herself back up and continued the fight.
My Robin is amazing through all of this. She has yet to give up any family management that she has always taken care of. Sick or not, she is keeping the kids and me scheduled and on task. Her fourth and final chemo is tentatively scheduled for Friday, July 5th. The following Saturday, July 13th, many of us are participating in the Ride for Alive! charity bike ride here in Skaneateles to benefit cancer survivor programs. I have recruited a team to ride together for this charity. We would like to celebrate Robin completing her fight with breast cancer by raising money in her honor to help cancer survivors live better lives. If you are interested, please consider joining our team to ride or volunteer or making a donation to help me reach my personal fundraising goal (see link below).
http://www.rideforalive.org/site/TR/Events/General?px=1002585&pg=personal&fr_id=1040
Saturday, May 25, 2013
Update Before Chemo Cycle #2
She had only a little nausea three to four days after her first cycle. After that, she bounced back pretty well. She does have some fatigue, which comes along with the chemo but nothing really bad so far.
This past week her hair started thinning so she decided to go ahead and get it buzzed off. She hated having to pull out handfuls all day. Cader has been helping her get it all out with a sticky tape lint roller. The hair was a tough emotional issue for her but she is getting through it well. Robin is also starting to have some ulcers in her mouth that is making it difficult to enjoy her favorite foods. Otherwise, she is staying strong and being really tough, mentally and physically.
I continued to be amazed by her strength and perseverance through all of this. She is truly a wonderful girl. She is also still receiving lots of love and support from friends and family, especially our three boys lately. Robin unknowingly is teaching the boys how to stay strong and focused and not give up.
This coming Tuesday is cycle number two of chemotherapy...
Sunday, May 12, 2013
Wednesday, May 8, 2013
Chemo cycle #1
The port is in and the first cycle of chemo is almost done. Everything today went smooth. Robin is very exhausted from the last couple of days but is doing well.
Monday, May 6, 2013
Chemo fail
The peripheral IV failed that Robin had for her first chemo infusion today. Three other infusion nurses tried to stick her to get access but had no luck. Robin absolutely hates being stuck so now she will be getting a port placed Wednesday afternoon with chemo right after. No more fishing for her veins after that.
Sunday, April 28, 2013
Two Months
What we now realize is how important it was that she was able to have surgery first. We initially were considering neoadjuvant chemotherapy, which is receiving drug treatment before any surgery. Doing this, however, would cloud the issue of possible lymph node involvement and the tumor margins (chemo may have cleared affected lymph nodes and decreased the tumor size). If she received chemotherapy first, she would have received a 3-drug regimen over six months and would have needed radiation. But with surgery first confirming clear lymph nodes and margins, she only has to have a 2-drug regimen over three months and no radiation. Robin feels very fortunate to have had the surgery quickly so that she did not have to be exposed to unnecessary treatment.
Tuesday, April 23, 2013
Chemotherapy Plan
This morning we met with the medical oncologist at Dana-Farber. She explained that the cancer is HER2 negative, based on the more extensive pathology testing that we were waiting on. It's nice to finally put this issue to rest. Remember the initial pathology results from the biopsy looked like it was HER2 positive. The difference is that they were able to look at a larger sample with a more advanced test.
She also told us that Robin had the option of not getting any chemotherapy based on all of these results. However, she advised that the most aggressive approach is to get a 2-drug regimen. Robin decided that this is what she needed to do. The chemo will be once every three weeks for a total of four cycles. Earlier we thought that she may need eight cycles over six months, followed by an additional six months of Herceptin. Now getting just four cycles and no Herceptin, we are down to just three months! Chemotherapy also does not have to start as soon as we initially thought. It will probably start in the first week or so of May.
After this appointment we went over to the plastic surgery office to get the first fill of saline for the tissue expanders. Robin was pretty nervous about this and was worried it would be painful. To her relief, it went very smooth and she had no discomfort at all.
Given that the cancer was throughout the breast and not catching it very early, we feel like we now have the best case scenario going forward. Robin was excited to explain to Cader how she may be done with all of this, including her final reconstruction surgery, by his birthday in September.
Thursday, April 18, 2013
Boston Trip Postponed, Radiation, and Drains
Friday, April 12, 2013
Surgical Follow-Up News
Sunday, April 7, 2013
Back at Home
The kids had a great time in Boston. They got to visit the Science Museum twice, the Children's Museum, the Boston Duck Tour, and other neat places. It really was a nice getaway for them while we were dealing with the hospital and recovery.
More information about the actual surgery...the breast surgeon said she was not able to visualize the tumor well when she removed it. She has to get the pathology report to determine what size tumor we are dealing with. Final pathology results should be available sometime this week. If the lymph nodes are confirmed negative and the tumor is not large, Robin should not have to have any radiation therapy.
So this coming Thursday morning we are leaving again for Boston to meet with plastic surgeon for a follow-up appointment. We plan to spend the night and come back Friday.
And the following Thursday (April 18th), we will go back to Boston to meet with the oncologist there to decide on the treatment plan. Most likely, the chemotherapy will begin shortly after this visit. We plan to get the chemotherapy administered locally at her oncology office in Syracuse.
Wednesday, April 3, 2013
Tuesday, April 2, 2013
Monday, April 1, 2013
Surgical Success!
Sunday, March 31, 2013
Saturday, March 30, 2013
One month after finding out I have cancer, my treatment will begin with surgery on Monday. I am nervous about my first ever surgery, but I know it is the first step in this long fight.
Thursday, March 28, 2013
Tuesday, March 26, 2013
Upcoming Surgery
Our plan is to leave for Boston this coming Sunday afternoon. We are taking the kids with us and plan to stay in Boston all week. Robin's parents and sisters will be in Boston with us also.
Thank you all so much for the love and support.
Friday, March 15, 2013
Thank You!
I appreciate you more than you can ever know.
Love,
Robin
Thursday, March 14, 2013
The Plan
After all of the appointments at Dana-Farber / Brigham and Women's, Robin feels that Boston is where she needs to have the surgery. The surgical oncologist who will be doing the mastectomy and the plastic surgeon were able to get everything scheduled for April 1st.
Robin has decided to be aggressive and have a bilateral mastectomy. Also, the first phase of reconstruction is planned for the same time. If the surgery goes well as expected, chemotherapy could begin in as little as three weeks after.
She will have to travel back to Boston sometime in the next week or two for the pre-op appointment. Surgery is planned for April 1st. After discharge, she will be returning to Boston for follow-up appointments.
I often refer to my Robin as a "plan freak." And she is in much better spirits now that she has her plan in place. We are all very excited about our upcoming Spring Break 2013 - Boston Mastectomy!
Spine MRI Results
Now we will be leaving as soon as we are done with our plastic surgery appointment.
Wednesday, March 13, 2013
Day Two
Tuesday, March 12, 2013
Dana-Farber Day One
We also found out the tumor is HER2 +. This means that it is more aggressive, BUT there are targeted drugs that can now be used.
The medical oncologist also wants to ask the opinion of the radiation oncologist to help decide chemo versus surgery first. They may need to look for lymph node involvement from surgery to decide about radiation. Or, they may say she needs radiation regardless of lymph node involvement. In that case, we would get chemo first.
So we are staying longer than we thought for thr MRI tomorrow at 2pm. We also may try to get a consult with plastic surgery while we are here.
We were very impressed with the two doctors here today. A plan will be figured out over the next couple of days.
Robin and I are having a beer and hanging out together tonight at the hotel. We have alot of things to process. We will follow up with everyone later.
Made it to Boston
from Robin
Robin
Monday, March 11, 2013
PET Scan Results
But of course there were a couple of other findings that could not be explained...probably not cancer but unknown.
Robin is very much relieved and would love to start celebrating but it's hard with the unanswered questions.
Why can't this just be a normal case? I guess because we all know that Robin is not normal!
Thank you all so much for the love and support and prayers.
Sunday, March 10, 2013
The Big Test
We can't thank you enough.
Friday, March 8, 2013
The End of a Very Long Week
This afternoon we met with Dr. Kara Kort, breast surgeon at Upstate. We have yet another twist to the case. She does not believe the MRI that shows the tumor at 7 cm. She thinks it has to be smaller based on her exam, which would be more good news. She completely agrees that Dana-Farber is the best place to go for another opinion.
We are somewhat more optimistic about this whole issue after today. However, we are still concerned that there is no consensus on what we are dealing with exactly. The next step is the PET scan that she will have on Monday. Our hope is that the PET scan is also clear.
Robin is still very nervous but finally able to be in a much better place right now.
Thursday, March 7, 2013
The MRI
Robin had a MRI in the morning and the results really altered the course we thought we were on. Instead of six very small tumors, it now seems like there is one large tumor instead. The approximate size is 7.4 cm x 3 cm x 4 cm. The good news was that there was no evidence of lymph node involvment.
Later in the afternoon, we had our first visit with Dr. Jeff Kirshner, a medical oncologist of Hematology/Oncology of CNY in Syracuse. He started considering the use of neoadjuvant therapy, which would be using chemotherapy first to shrink the tumor and slow any progression with the mastectomy happening later. This would be different than the traditional route of surgery followed by chemotherapy, know as adjuvant therapy. The reason is so that she doesn't have to wait for surgery recovery before starting chemotherapy. During our visit he picked up the phone to call one of his colleagues at the Dana-Farber Cancer Institute in Boston. After a few minutes of discussion, he hung up and told us that this is where we had to go. Originally, we thought he could refer us to Memorial Sloan Kettering in NYC. However, he says that this group in Boston are the world's leading experts on breast cancer in young women and if this were his wife or daughter, that's where they would go. He said this to us very kindly and very confidently.
We then went down for an ultrasound specifically to look at axillary lymph nodes (armpit). This also showed no evidence of enlarged lymph nodes. Another piece of good news and it agrees with the MRI, but neither test is great at finding lymph node involvement.
This week we are probably getting a bone scan and next week a PET scan to look for cancer in other parts of her body. We need to find out that there is cancer no where else.
Tuesday we travel to Dana-Farber to meet with a surgical oncologist and a medical oncologist that Dr. Kirshner recommended. Tuesday will be another very long day.
Of course, any of this may change depending on what we find out in Boston.
All of this is very scary for us and we appreciate all of your thoughts and prayers.
Wednesday, March 6, 2013
The Support
We have received help in so many different ways already:
Friends that have been down this road before and know just what to do and say...
Friends that use their personal connections to get Robin the referrals she needs...
Friends that we can rely on to help us with our kids, anytime...
Friends that can just be with Robin or call to spend their time and listen...
Everyone asks what they can do. One of the best things is to send Robin your love and positivity through a phone call, text, email. She cherishes each one, just please understand that she can't always reply.
Tuesday, March 5, 2013
The Pathology Results
Tomorrow will be a busy day for us. We have a early morning MRI, then a consultation with the surgeon, Dr. William Schu, followed by a consultation with a medical oncologist, Dr. Jeff Kirshner. Both of these guys are highly recommended doctors from here in Syracuse. Our plan is to also meet with another surgeon from Syracuse, Dr. Kara Kort, on Friday hopefully. And then early next week we plan to visit Memorial Sloan Kettering Cancer Center in NYC for a second opinion on everything, unless we do not have time to wait. Everyone involved seems very concerned and we are moving this process along quickly.
tumor A: invasive ductal carcinoma; Grade I; ER/PR +; HER2 equivocal
tumor B: invasive and in situ ductal carcinoma; Grade II; ER/PR +; HER2 equivocal
tumor C: invasive carcinoma with mucinous features; Grade II, ER/PR +; HER2 negative
Monday, March 4, 2013
The Biopsy
The Crouse Breast Health Center staff has been amazing throughout the last few days with us. Laura, the nurse "Navigator" there is exceptional. She is able to get us anything we need (the radiologist on the phone, test results, scheduling initial consultations). They do a great job of making the best of a bad situation.