A surprise diagnosis
The oncologist appointment finally came Oct 10 – just after Thanksgiving. Since this was an in person appointment, it meant driving up to Halifax. We took the opportunity to book a hotel and spend the night, knowing that we had some shopping we wanted to do in the city.
Shortly after the oncologist got into the office, he shared some unexpected news. The second round of pathology (which I wasn’t expecting) indicated that at least some of the cancer cells were HER2+. This changes everything. It means that there is no choice about chemo. He said that in some ways this is good news as it gives another way to target the cancer (especially, with the reduction in HR number (originally 95% now only 25%). The drug that is given specifically for HER2 is Herceptin and it is given as an infusion every three weeks for a year. Fortunately, for most people it has few side effects. Unfortunately, for herceptin to work it must initially be given with chemotherapy – in this case it will be TC (Taxotere and Cytoxan). This is given once every three weeks for four cycles. So, I will start chemo with TCH for four cycles, and then just H for a full year.
Radiation is still necessary, and that can happen with herceptin, but not TC. So, the next step in treatment is TCH chemo then a recovery period then radiation. After that there might be endocrine therapy (also called hormone therpy) – but I haven’t tolerated that well in the past, so we will see. With the lower hormone numbers, it might not be worth the side effects.
The key words the oncologist said were, NED (no evidence of disease) – the surgery removed all evidence of disease and the scans they did showed no disease in the organs or bones, and as a result they are treating this as curative. That is they expect this treatment to “cure” me.
In the breast cancer world herceptin has been a miracle drug. It has taken a type of cancer that has been known to be aggressive and one of the deadliest forms of breast cancer to making it one of the most survivable forms. That is good news.
I’m still getting my head around all this. There are a couple of things that need to happen before chemo can start. First I need to get a port. I don’t have usable veins in either arm, and with so many infusions, a port is the best way to go. The second thing is a heart test. Herceptin is also cardiotoxic – in that can damage your heart – fortunately, not in the same way as andriomacin which is one of the drugs I had the first time I had chemo.
Unfortunately, TC also causes low white blood cells, so they typically give you a white blood cell booster. They call it something different than neulasta, but I think it is the same thing. It causes bone pain the same way and is recommended to take Reactin (interestingly, neulasta they recommended Claritin and I found Reactin to be less effective for me in the past). What is neat here is they will setup to have the VON (Victoria Order of Nurses) come to give the injection – so a nurse will come to be house 1-2 days after chemo to give the injection. I think I still need to get it from the pharmacy myself, that is a question I didn’t ask.
All the chemotherapy can be done in Bridgewater. There are a couple of chemotherapy specialists here – he was short of calling them oncologists – but they are able to supervise the treatment, and report back to my oncologist. This means I don’t need to drive for over an hour to get to the chemo sessions. The port insertion will also happen in Bridgewater, likely by the same surgeon who did the node dissection. I continue to be amazed at the level of support given for treatment. Information doesn’t always flow as quickly as I’d like, but the treatment itself is moving forward well. I feel well taken care of and I’m not missing the US system. I certainly won’t miss the drives back and forth to Stanford for treatments and doctors appointments. The local hospital is a five minute drive – which makes getting to and from treatment a whole lot easier – and if I don’t want someone with me, that works out ok, as it is easy enough to call for a ride home afterwards – or if I’m overly energetic it is a 25 minute walk.
Mentally and emotionally, I’m still trying to wrap my head around what all this means. Now that I like to sew and I’m setup for it, I’m looking forward to making my own head coverings. I’m not that concerned about losing my hair – more I’m concerned about how (and whether) it will grow back. Losing my hair will mean I look like a cancer patient – and I now live in a small town. That will feel different than before.
In the mix with all this is that I’d really like to move into Treehouse before chemo starts – which will likely be within 2-3 weeks. It seems that 2-3 weeks is the pace of pretty much everything here.
Moving into Treehouse is a bit daunting, but my neighbours are all pitching in to help get my unit ready. It is close – so I expect by the end of this weekend the work could be finished. Unfortunately, hubby is being pulled in many directions with so many critical project tasks that he cannot focus on our unit – so I’m doing what I can to get both it ready and what we need from the house moved. We aren’t moving much stuff – trying to move the minimal amount. Fortunately we still have our house, and don’t need to sell it soon – we want to finish renovating it before selling. There is another Treehouse family living here, which complicates things a little, but will also help – as they can do some of the packing up at the house for us – mostly this will be packing up things like all the food that is in the kitchen so it can be moved. I have most of my open food in boxes but a lot of other stuff that isn’t.
Our kitchen at our new place isn’t ready quite yet. The upper cabinets need to be moved up, which I’m told isn’t a difficult task. Fortunately there are people other than hubby that can do it, so hopefully that will be done this weekend. We have doors for the upper cabinets, which is nice. We don’t have covers for the lower cabinets, which are almost all drawer pulls. This is good, as I don’t yet know what heights I want the various drawers to be at. I will have a chance to put things in the various drawers and we what makes most sense. I’m excited about having my own kitchen again with my own appliances. I really miss my induction cooktop!
On top of all of this, I keep over doing it with my right arm. The incision has healed but the muscles haven’t. Plus I have swelling from lymphedema on the right arm and on my right side (making my right breast appear larger than the left! I had started swimming which really helps, but I pulled something in the arm this afternoon while throwing the ball at the beach. It had been weakened by all the lifting I did as we bought things first at Ikea then at Costco – helping with loading and unloading. This is where I need to stop and remember to ask for help. I feel like I’m not pulling my weight, asking other people, who I now are also tired, to help finish paint the unit so that it is ready for us to move in. I need to remind myself that people want to help – but also, I did a lot of painting of the first 18 units, and most of the painting in my unit – so it is OK to be asking for help.
I’m reminded of something that my friend Janet Lee always says – something that she learned from Arnie and is making a documentary about – “Always ask for help”. I will try to make that one of my mantras.