Relay for Life and Chemo #15

Saturday was Relay for Life. Having never participated before, I didn’t know what to expect. I was happy to be joined by my mom, my husband and kids, my mother-in-law, Monika, my dear friend Cherie and her family, and other friends who all rallied to walk for a cure.

At the beginning, there is the “survivors lap” where all the survivors, clad in purple t-shirts, make their way around the track. It was surreal to see the sea of purple shirts and to walk among them. At first, I felt I didn’t belong in this “club” – oddly enough because I still can’t really fathom that I am being treated for cancer. However, about ½ way through the lap, I recognized the strength that comes from being surrounded by others who had beaten cancer and found some peace and hope being among them. I realized that I, too, am a survivor and will continue to be so. I will continue to walk among the purple shirts until there is a cure and cancer is a threat no longer.



Following the survivors lap, my family joined me and we walked laps and laps – stopping occasionally to shop at one of the vendors, to be offered iced tea, or to greet someone we knew. The event goes on for 24 hours – we did 4 hours in the morning and then went back in the evening to see the luminarias lining the track. It was beautiful to see them and we lit them for our loved ones who fought and continue to fight cancer. My mom and Cherie each lit one for me. It was touching and emotional – but with the boys flashing their glow sticks, I pushed them in the stroller for the second survivor lap with renewed determination for winning this battle. All told, thanks to the tremendous generosity of family and friends, I raised $1925 for cancer research – the second highest individual fundraiser of the event. Thank you to all who contributed to this great cause.



Friday was Chemo #15 and the completion of cycle 5. If all continues with the current treatment plan, I have only 3 more rounds of chemo to go. Then I’ll get another PET/CT scan and then hormone therapy for a couple months, then surgery, then radiation. I’m hoping that this plan holds and that I can look forward to being done, or close to done with the treatment triathelon by the end of the year. We’ll see. I’ve learned to not focus too much on the calendar because things shift pretty easily. My oncologist seems really happy with how things are going and reported that the Tumor Board was unanimous in their recommendation for hormone therapy and surgery. So, that’s great news that all are in agreement. I have to wait at least 6 weeks after finishing chemo before I can have surgery – but that’s fine because it will involve also having 3 surgeons at my surgery – a little like getting the planets to align in terms of scheduling. So, the more lead time to get it scheduled, the better.  Although I haven’t ever had surgery before and I have a lot of fear associated with the whole concept, I’m also strangely looking forward to it since it represents another hurdle in getting better and I want to be on the other side of that hurdle.

We are meeting with the radiation oncologist on Wednesday to hear what her thoughts are on the extent and length of time I’ll need radiation. Whatever that is, I’m ready to hear it and to start mentally preparing for that as well. This experience is so crazy in that so much of it is physical and how your body responds, but there is also this huge mental piece of it that requires so much processing and thought about all the implications. I am so thankful that my husband is always so helpful in putting everything in perspective and keeping me on track mentally.

I am looking forward to our family reunion at our house on Friday. It will be great to see everyone and catch up. And I am happy to report that my sister and her family have safely returned from their trip to India. So nice to have all the travelers home. 

Hope that this last week of July finds everyone happy

Relay for Life on Saturday!

I would like to wholeheartedly thank everyone who is sponsoring me for Relay for Life on Saturday!!! I am truly touched by your generosity and support. Your belief in the cause and in me is tremendous and I really can’t thank you enough. I will post some photos and a report on the event early next week. I’m looking forward to participating and experiencing the energy of hope and healing. If you would still like to sponsor me, there is still time! Here is the link and thank you!!!

http://main.acsevents.org/site/TR/RelayForLife/RFLFY10CA?px=17108793&pg=personal&fr_id=20475&fl=en_US&et=zkmKzUeTpD8p0v5MB0YiTg..&s_tafId=408397

This morning, we had an interesting appointment with a doctor at the Osher Center for Integrative Medicine at UCSF. He confirmed most of what we were already doing in adapting our diet/exercise in an effort to make my body an inhospitable environment for cancer. He said that he thinks of cancer as a weed and the rest of the body as a garden and that his approach is to tend the garden and kick out the weed. I liked this imagery and I definitely want a well tended garden that is weed free… I guess we can look at chemo as “Round Up”. Ha ha. Anyway, his big no’s for fighting cancer are – refined sugar, red meat and dairy products. The dairy products were a bit of a surprise but as he explained it, in nature, one species doesn’t drink the milk of another, nor do they drink milk after they are weaned. Makes sense, huh? He also said it is normal to be lactose intolerant because humans don’t generally produce the enzymes to digest the milk of cows. Hmmm… food for thought.

This past weekend, we had a lovely visit with my Dad and Beth, who helped out tremendously with Matthew’s birthday party and babysat so Marchus and I could go out for a wonderful dinner for my birthday. Thank you to everyone for all your warm birthday wishes! It was a great day! The boys and their Gran and Granpy baked me cupcakes for breakfast and along with Marchus all sang to me. I really appreciated all of my Dad and Beth’s help and supportive spirit. Matthew’s party was a big hit, complete with Frosty the Snowman cupcakes and a lot of splashing in the kiddie pool. Incredible to watch the energy of toddlers in action. The kids had a great time. Hopefully, the grown ups did too. :)

I’m really glad they never told me at the outset that I’d have 18 rounds of chemo. I think it would have completely put me over the edge. However, here I am at chemo #15 on Friday and well, it is not quite a walk in the park, but is totally doable. So, please send me positive thoughts and prayers on Friday for effective chemo. This will also be the first time I’ll have talked to my oncologist since the Tumor Board met about my treatment plan. I’m wondering what new information I’ll hear and am trying to stay positive that, whatever it is, it will be the right plan and will lead to my being cancer free. So, stay tuned… jeez, talk about a marathon. 

Shifting Gears... again

I just got an email from my doctor following up on the Tumor Board meeting on monday. And of course, it involves another change of plans...which in a way makes sense. So, what they are thinking is that I continue on chemo for this cycle and one more - which will finish on August 20 - that's 5 more infusions. Then I have a scan and switch to hormone therapy, which I am presuming will involve both shutting down my ovaries and giving me tamoxifen which prevents the estrogen from binding to the cancer. They want to see if the cancer remains stable with this approach before sending me to surgery and radiation. So, in essence, it will only delay surgery for about 2 weeks because I have to be off of Avastin for 6 weeks prior to surgery and they are talking about checking on how I am doing on hormone therapy after 1 to 2 months - another scan. So, I'm thinking that this is good news because if they have to take me off of Avastin to move toward surgery, at least they aren't setting me adrift with nothing to combat the cancer during that time cuz I'll have the hormone therapy during that time. I also remember the one oncologist we saw in St. Helena suggested we fight the cancer with hormone therapy alone to start, rather than chemo/surgery/radiation. So, hopefully, the hormone therapy will also be successful in fighting back the cancer and keeping things stable since my cancer has high hormone receptivity. The hormone therapy is what they use to keep the cancer at bay long term anyway, so this way, they can check and make sure it is working - which we know it will since mine had 92% estrogen receptivity - or something close to that.

But argh. Another change in the plan... I swear, this is a HUGE lesson for me and I think I'm doing OK in rolling with all these changes... It is definitely a learning curve. I'm learning to roll with it cuz ultimately all that matters is that I am cancer free... :)

Chemo #13.. and counting

On Friday, we had very positive meetings with both our oncologist and surgeon. We heard words like "going for cure" and "great progress". All wonderful words. The gist of it is that they want the tumor board to weigh in but that we are still on track for surgery and radiation in the future - at some point. Surgeon said recovery from surgery would be about two weeks - not too bad! She would ideally like to see more shrinkage - a couple cm - but said as it is, it would still be fairly straightforward. Good news.

So for now we are starting off another 3 week cycle of chemo, while the tumor board has their discussion in the next few weeks. Then we will have a better sense of what to expect timewise. They are still talking about double mastectomy and lymph node removal on one or both sides- depending. :) Either way, it'll be what it is and I'll move forward toward recovery and health.

I have chemo again this friday with another dose of the bone builder. Hoping that helps kick that last remaining bone spot out for good. :)

In other news, we had a great visit from Ida and Arnt from Norway on friday. Ida's mom and my mom were pregnant together way back when and we've built a very long distance friendship since we were tiny. It was great to see them and I hope they have a wonderful vacation touring California.

This weekend, we also went camping with our great group of pals. Thanks to Dave for making it all just wonderfully relaxing for everyone. This was our 7th year in a row and although we seem to have replaced the adventures on the river with more hang out and bonding time, it always feeds my soul to spend time around the campfire with such great friends. Thanks to all for making it special.

Matthew also turned 2 years old on Saturday. He seems to have hung up his toddler shoes and now wants to be a big boy and keep up with his big brother. My Dad and Beth arrive tomorrow for a visit and to help celebrate his birthday on Saturday. It will be great to have them here for a few days.

All in all, although we are all pretty tired from our camping trip with the heat in the high 90's, we're doing well and hanging in there. As always, Marchus has been a strong support through all of this process. My birthday is in a couple days and this year, I am just so happy to be alive and share my life with so many wonderful people. Thank you to all for your support and love. I am continuing this fight with continued intent and expectations for success!

Continuing Chemo - for now

The good news is that of the 6 original bone spots, only one remains visible on the PET scan and that one’s metabolic rate is very low – 1.6. That’s great news! YAY! The lymphnodes under my collarbone and my sternum are now measuring 6mm. I don’t recall the original measurements – I’ll have to look it up. I still haven’t seen an actual copy of the PET/CT scan results. But like I said before, things are continuing to shrink and that’s what is most important.

In speaking briefly with my oncologist late yesterday, she was feeling unclear as to how my treatment plan would unfold. She hadn’t yet spoken to my surgeon and was anticipating getting more information when the Tumor Board reviews my case next week and potentially in the following week as well. It may be more than one meeting to come up with a plan because they have a lot of people scheduled on the next Tumor Board agenda and they may not have the time necessary to devote to a full discussion next week. So, it is fine with me for it to take longer – I don’t want my treatment plan to be decided in a hurry.

That means for now, I am continuing with the same chemo for the time being – until a decision is made to change course or move on to the next phase. This process sure has some serious ups and downs – enough to make me crazy just with all the unknowns. For now, I am celebrating the positive news that the bone spots are disappearing and am hoping that with more chemo that last spot will be gone as well.

So, tomorrow I am meeting with my oncologist and surgeon and then having more chemo – that’ll be number 13. Keep those positive thoughts and prayers coming. I AM going to beat this – just maybe not according to the timeline I had in my head. I am learning (albeit slowly) to have patience and continue to have faith. Thanks for cheering me on. 

Rollercoaster

Well, it’s been a bit of a rough week or so emotionally and mentally for me. I had my PET/CT and breast MRI last Wednesday and got a somewhat vague report from the nurse on Thursday morning. She said that everything showed as shrinking, just not to the degree that it did before. She said the test results were good and were to be expected. She said at this point things are still on track and that Dr Melisko (my oncologist) and Dr. Ewing (my surgeon) will talk and then get back to me Friday night or Tuesday. She said that things are slightly decreasing - breast mass from 2.4 x 4.6 to 2.4 x.4.1 (so 0.5mm change) and same metabolic rate. The lymph stuff is still lighting up (I don't know how much but less than before). And that the one bone spot that they measured (they didn't measure the rest) went down from 1.9 to 1.6 - with less metabolic distinction - meaning that it is getting harder to differentiate what is cancer and what is regular bone because the bone is healing - probably thanks to the Zomeda. She sounded positive in her delivery, and said that at this point, the plan remained the same.

It is now Tuesday evening, 7pm and I still haven’t heard from my oncologist. Although I did just get a call from UCSF that I have appointments Friday with both my oncologist and my surgeon, as well as chemo on Friday. I’m taking this as a VERY good sign that whatever is happening in my body is showing sufficient enough healing to start talking about surgery. And as odd as it sounds, I’m actually to the point of welcoming surgery as a clear step toward completing this triathalon.

Having said that, following the tests last week and knowing only a very vague report of how my body was responding led me into a bit of a black hole emotionally. I think that I have been making such efforts to be positive and strong through all of this and having these tests reflected all of the doubts and fears that I had been pushing out of my mind for so long, such that I completely fell apart on Wednesday night. I hadn’t really fallen apart except for briefly in the beginning with my diagnosis. This time, I was a puddle of tears and fear and emotional wreckage. Marchus was brilliant in picking up the pieces of my doubts and fears, putting each one in perspective for me, one by one. I’m only human after all and no one can maintain a Pollyanna outlook all the time, especially when facing cancer. Still, I didn’t really pull myself together until this afternoon even though we had a wonderful weekend with our annual neighborhood 4th of July block party as a true summer celebration. It is a highlight each year, and watching the boys play in the street and the jumpy house with all their neighborhood friends is such a treat, as was watching their faces watching the fireworks show. I wish I had been in a better state emotionally.

In any event, apart from my emotional rollercoaster, Adam started prekindergarten last week and is just loving his new class. I’m so proud of him and how much he’s growing up and becoming such a thoughtful kid. Matthew surprised us with his first pee on the potty this week - reminding me that diapers aren’t forever. He’s also mastering new words each day – jumpy house, fireworks, otter pops – the words of a blissful summer. He’s turning 2 on Saturday. Time goes by so fast. I remember being pregnant with him like it was yesterday, waiting and waiting for him to be born.

As I get more information regarding my treatment schedule, I will post again. Thanks to all for your support and for cheering me on through the tough times.

Chemo #12 - heading for SCANS!!!

Yesterday, I got my TWELFTH chemo infusion - marking the end of cycle #4. We got the nurse who saved us last week and brought him some cookies as a thank you. :) Having a nurse who knows how to treat you specifically is really helpful - no need to explain everything or debate what the best approach is. He already knew the drill. The steroids they give me as premeds before the chemo make it difficult to fall asleep the night after chemo. So, I struggled to finally fall asleep at around 2:30am despite feeling tired. Not a great way to start the weekend when I know the fatigue from the chemo is going to creep up quickly for a few days. My plan is to take an afternoon nap when the kids have their nap/quiet time this afternoon. Hopefully that will help a little bit.

Meeting with my oncologist yesterday felt really good. She seems really positive about my progress and although we won't know anything definitive about what's going on inside my body until we get the PET/CT scan and MRI results - the tests are scheduled for THIS WEDNESDAY - she felt I was doing well, and continued to talk about surgery as the next step. I'm trying to keep an open mind and recognize that if I need more chemo, that's fine too. As long as I am in treatment that is making be better, it is easy to keep a positive attitude about it. Having said that, I can't help but have high expectations for the scan results. My hope is that they show no metabolic activity in my bones and lymphnodes and minimal to no metabolic rate in my breast. Please keep those thoughts as the goal when you pray/think of me and my scans this week.

I'm not sure I have mentioned it, but I have continued to work my regular work schedule since starting chemo - except for the days off to go to medical appointments and chemo. This, along with my kids, husband and tasks in keeping our home running smoothly, has helped me not have too much time to dwell on the whole "cancer diagnosis". I know some people choose to stay home through their chemo treatment - for me, that wasn't really an option - both economically as well as sanity wise. My work folks have been tremendously supportive and understanding - which helps a lot. That's not to say that the demands on me at work have reduced, they haven't. But having those responsibilities and committments also give me a sense that things are normal and as they should be.

My family also helps me keep my perspective. Next week, Adam is moving up to his Pre-Kindergarten class. He's really excited about it and we've talked about it a lot. He asked if Matthew could come see his classroom when we go for his first day. I said, of course, he always comes with us when we take you to class. Adam said, "Oh good, mommy. He will be SO impressed." "Impressed"? Jeez, he's only 4. What a vocabulary! Very cute. Matthew is truly becoming a two year old. His vocabulary grows every day and although sometimes he's not as articulate as he'd like to be, he can usually get his point across. He is all about the cars in the "Cars" movie - even though he hasn't seen it yet. He knows all of their names and loves to tell us that they are "fasssstttt". Marchus has been enjoying the World Cup soccer games this week - those games have sure had some great sporting moments. The boys are just starting to have an appreciation for soccer - now we have to temper their zeal for kicking balls around the house. Ha ha...

So, as I try to mentally prepare for my PET/CT and MRI on Wednesday, I am thankful for everyone's support, good wishes and prayers. Knowing the team is behind me, cheering me on in my quest for good health bolsters my attitude and helps me press on in that direction. I will post again with the PET/CT and MRI results later this week when they are available. I'm counting on some good news to share. :)