Sam's Network of Love and Light

All my stirring becomes quiet around me like circles on water - Wendell Berry

CALLING ALL ANGELS

10.14.2012

Hi everyone,

Thanks to all of you who have been reaching out recently wondering how I am doing. An update is long overdue. The summer passed all too quickly and I have had a lot of great adventures – including an Alaska cruise with Mum, my stepdad Phil and aunt Philippa and Jesse and I spent two weeks in beautiful Italy eating pasta and pizza as part of the Sam 10-pound challenge. At home I have simply enjoyed lovely Vancouver by going for walks on the beach with friends, returning to some regular activities, spending time at the barn with Lily, and taking it easy.

A few days after Jesse and I returned from Italy in early September, I started to have increased pain in my back. We had a CT scan done and unfortunately the news is not what we were expecting. The CT shows some areas of concern in the space where my right lung was removed. The doctor feels this is the cause of my pain – which at this point was requiring pretty strong pain killers to alleviate. He thinks that the cancer is back. There is also a small, pea-sized area of concern showing on my left lung. The CT scan was very unclear with a lot of noise so we’ll be re-doing one in the next week to be sure. But my tumor marker is also elevated again so this confirms that something is not right.

At this point, the thoracic surgeon here in Vancouver has stated quite strongly that surgery is no long an option for me as it runs the risk of infection – which would be deadly. I am meeting with my oncologist this week to discuss chemo and radiation options. Thanks to Cindy Pond we were connected with Laura Shawver at The Clearity Foundation in San Diego who did a full tumor profiling after my surgery in Boston. This gave us a more specific idea of how my tumor behaves, and what it may be more responsive to in terms of treatment. Laura has also suggested some “out of the box” options for targeted chemo treatments that we’ll be speaking with my oncologist about as well.

I won’t lie, I am devastated. After getting over the initial shock, I have been riding waves of ups and downs – of disbelief, helplessness, and of strapping on the gloves and kicking this thing’s ass once again. Gabi reminded me that we’ve had this kind of news before, and I am still here!

I believe a lot of my healing, perseverance and strength has been a direct result of the support I receive from all of you. The intentions and affirmations you send for my healing come in many forms: text messages, emails, notes, cards, drawings, paintings, gifts, casseroles and cookies… all made with the love you have for me. Through prayer, meditation or a simple moment of thought, please imagine me healthy and whole, happy and vibrant. Please print this photo of me and use it as a reminder to send this healing energy my way as often as possible

Thank you for your love and for continuing to walk with me on this journey. Please feel free to share my story and this blog so we can expand my circle of support and healing.

With love, light and gratitude always, Sam

The Sammy 10 Pound Challenge!

07.10.2012

Our beautiful Sammy is finally home — and she obviously brought the sunshine with her!

Last week, we were able to jump right in to one of our usual peaceful beach walks with my son Theo. We even took extra time to sit and watch Jericho’s baby bunny rabbits bounce around after their moms — though Theo was more interested in feeding Auntie Sam his muffin, which was a good thing because she needs all the extra nutrition she can get.

Sam wrote in her last post, “I feel like a 10 pound weakling…” Sam is not weak, but she IS tiny and in need of some fattening up, so Lucia and I would like to start the “10 Pound Challenge” and we are calling on Sam’s circle of friends for help. If you want to drop off some yummy treats and easy meals that she can grab from the fridge,  please email Lucia Lundin who very kindly has offered to orchestrate a schedule so Sam has a steady stream of goodies. No need to make a huge casserole – just think of Sammy when making dinner for your family and set aside a portion or two!

FYI Some foods Sam is trying to avoid: all cow dairy (butter is hard to avoid so not to worry if this is in your dish!), red meat, and pork, anything too spicy or tough on the gut (i.e. lentils, beans). Oh, and Sam does not like beets! Please go light on the gluten, when possible. If you have questions please feel free to email us.

Lucia’s email is lucialundin@gmail.com

Thanks to all for the continued love, warmth and encouragement.

Hugs,

Gabi & Lucia

I’m Coming Home!

06.27.2012

Hi everyone!

Great news… Actually two bits of great news: I had my follow up appointment yesterday and got the A-Ok to fly home! Yay! And even more exciting than that, my tumor marker – yes the one that has been over 1000 since December and that pretty much tracks the cancer activity in my body – IS 36 – THAT IS NORMAL! Can I hear a collective WOO HOO?!?!?!! As you can imagine this news came as a huge relief to us. It truly is a miracle.

I’ve been feeling a little better every day. Still pretty wonky and in need of narcotics and lots of naps for sure. Jesse and my dear friend Lisa took great care of me while we were in Cape Cod this week. I feel like a ten pound weakling (95 pounds actually) and have to remind myself that getting back in shape will take time.

I will really miss my cousin Emma and her four kids Dylan, Owen, Molly and Emily. I’m so grateful for all the bed time reading, banana bread, art projects etc. It’s been the silver lining to reconnect with them as well as my cousin Dave, his wife Jess and their little guy Grady. I’m sad to be leaving before getting more time with my cousin Lisa and her four amazing boys but  promise to make the east coast tour more frequently.

For the first time since last December I am starting to breathe a sigh of relief. Thanks to all of you who have been such an amazing support to me, Jesse, Alison, and my family these past six months. I look forward to getting back to Vancouver and settling back to life and to slowly feeling “normal” again. I’m hoping to bring back some of the east coast warmth and sunshine we’ve been enjoying – that will definitely help with my recovery!

I look forward to reconnecting with all of you this summer!

With love, light and gratitude always,

Sam

Last but not least. . .

06.26.2012

Well, Sam had her follow up appointment today. Everything is healing well. The big news is that her tumor marker came back 36. For those of you who don’t remember it was in the thousands previously. For the first time since this whole thing started the number is in the normal range. What else can we say. It’s a huge relief. Huge! She is still not 100% but getting there. What’s next has yet to be determined in terms of treatment. All I know for now? She’s coming home with me tomorrow!

See you soon.

Jesse

Recovery in Cape Cod

06.22.2012

As of Tuesday Sam was feeling good enough that we decided Cape Cod would be a nice place to chill out for the weekend. Our friend Lisa arrived Wednesday night and we drove to the Cape Yesterday. The last two days were uncomfortably hot outside of air conditioning or the water. Between 92 and 100 degrees F. Its dropped a bit to the mid eighties so we are a bit better off now. Lisa (who is a nurse and massage therapist) has been helping Sam with her recovery getting what’s left of Sam’s muscles going again. So far so good. The stairs down to the beach are fairly steep and long. About 90 steps. Sam has been down and up twice without passing out so I’ll call that a small victory. We just have to rest every 10 to 15 steps or so to make sure we don’t push her cardio recovery too much.  Slow and steady. No strain allowed on the heart or lung for a few more weeks. We will stay until Tuesday then head back into Boston for a doctors appointment/follow up. If they say Sam is healthy enough we will fly home together Wednesday.

Sam’s cousins here have been nothing short of AMAZING! Both in Boston and here at the Cape we have felt totally at home. Thank you!

Having said that, I can’t wait to get Sam back to Vancouver. In future it would be great if her cousins and their families could visit us so we can return the hospitality.

Jesse

All tubes are out

06.18.2012

I’m happy so say that Sam is recovering well from the second surgery. All the tubes are out, her appetite is coming back, and if all goes well they will let her out tomorrow. We will be heading to her cousin’s place in nearby Winchester. I don’t think we will go too far for the first couple of weeks but may go to Cape Cod for a few days if  Sam feels good enough to travel. Right now she is able to walk short distances with tolerable pain on her right side but it’s limited. Pain meds are still very necessary round the clock.

From what I am told there is a heatwave coming here. Wednesday is supposed to be 35 but feel like 39 with the humidity. Get ready to sweat. Luckily Sam is part lizzard and will probably like it. I hope her sutures don’t melt.

It’s all going as well as can be expected 4 days after surgery. We will let you know what happens when we are set free from the hospital ( again).

Jesse

The Latest

06.13.2012

Sam has just come out of the O.R. She did well. It was about 2 1/2 hours in total. I received updates all the way through from Alison and spoke to the surgeon after the case and it seems like everything was as good as could be in this particular situation. He did not find a fistula. That may not mean that much to you but believe me, it’s huge! The graft they placed over top of the cut lung area from the first surgery looked healthy and thick. It’s acting like a protective layer in the area that the fistula can form. He also said that was no indication of a full blown infection but there was some murky looking stuff which may have carried a low load of bacteria. In any case all that stuff was washed out with antibiotics. Sam will sit in the post -op recovery for a while before heading back to the ward. Not the ICU.

She will wake up once again with a chest tube, naso-gastric tube, a couple of IV’s, catheter, and another small line going into the top of her lung which gives her chest an internal constant wash/drip of antibiotics in addition to her regular IV antibiotics. She will be happy it went well but I guarantee you she will not be happy about the tubes. SHE HATES TUBES!

I have managed to get the last flight out of town Friday so should be there by noon Saturday. With any luck Sam will be able to update you herself by the time I get there.

Jesse

Here we go again

06.12.2012

Here we go again.

The preliminary culture of the fluid in Sam’s chest cavity on the right shows a possible early infection. They have now placed a chest tube drain back into the right side and started antibiotics. With the cavity being so large the penetration for the antibiotics is not that great so they will be taking her back into the operating room today at 5pm EST. They need to make sure there isn’t a fistula forming at the base of the cut airway from the first surgery. So far they don’t think there is but they will take a look inside today. As long a s there isn’t there will only be a wash with antibiotics during surgery followed by continuous slow circulation wash from a tube at the top of her lung draining through another tube near the bottom for 3 days. She will be in hospital for 5-7 days post. I’m sure you are thinking the same thing Sam and the rest of us are. . . this F#ck&*@ Sucks! This obviously was not part of the plan. I guess getting cancer is never part of the plan. Doesn’t really make you feel any better though does it. In any case we are told this is a treatable complication of surgery. I spoke to the surgeon yesterday and he believes we have got on top of things relatively quickly. Hopefully he’s right.

Alison, being the incredible best friend she is, flew out Sunday on the red-eye and has been there since Monday morning. Sam’s friend Heather has also arrived. Thank you both!

I will being heading out after work Friday if I can get a flight.

Sam is not feeling great so please excuse her lack of correspondence. Alison and the rest of the support team will do our best to keep everyone up to date as to what’s happening.

Until then.

Jesse

Back to Boston

06.12.2012

Well, it’s been just over a month since surgery and Sam was recovering very slowly out east but has hit a bit of a bump in the road. Earlier this week she started feeling a bit off and had a low grade fever. She went in to the hospital to get checked out and her white blood cell count is  a bit high so they have admitted her again for testing and observation. So far they don’t have a conclusive source for the infection but it may end up being an early infection in the space previously occupied by her right lung. It seems like they have caught it early but we don’t know for sure. Hopefully some antibiotics will do the job. Her spirits are obviously a bit down because of this. Thankfully her good friends Heather and Maggie from Montreal will be heading there this week to be with her. Alison and I will head out there as well if we feel like she needs the extra support. Right now I am planning on flying out on the 20th. If Sam is healthy enough to travel and the doctors there are ok with it, Alison may go out early next week and just bring her home so she can recover here. It will all depend on how Sam feels. If the recovery from this lapse is quick I still may end up going to spend some time with her in Cape Cod before bringing her home at the end of the month. Again, nothing is definite at this point. We should know more in the next couple of days.

Jesse

Update from ‘mum’

06.05.2012

Hello to all,

I arrived in Boston from Vancouver on May 26th and Auntie Phil (AP), Sam and I drove to AP’s lovely house in Glens Falls NY the next day.  Sam coped well with the 3-hour journey thanks to a veritable pharmacy of meds, which continued to sustain her for the following week.  Sam and AP keep a comprehensive chart of exactly what has to be taken and when.  She made a valiant attempt to decrease the dosage of her main pain-killer but it was too early and the pain level was more than she could cope with.  So she resumed the prescribed dosage and by the end of the week was able to make a short visit to the local shopping mall.  She is regaining her appetite thanks to AP’s culinary skills but still needs a lot of rest and good food to build up her strength.

She’s looking forward to meeting up with some of her ‘angels’ over the coming weeks.  Her spirits definitely lift when she has cheerful faces and conversation around her.

Love to all of you who have been so supportive to Sam these past months,

Sam’s Mum

Photo: AP, Sam, Mum