05.28.2012
Hi all,
Just a quick update to let you know how I am doing. After a week and a half with Emma and her crew in Boston, I have moved to my aunt Philippa’s in upstate New York (Glens Falls) for a few days. Back-up arrived over the weekend as well: mummy! She will be here with us for the week. đ
I wish I could report that I am feeling better every day but the past couple of weeks have been really hard. I am in a lot of pain, pretty much all the time. I am still on morphine, tylenol and advil around the clock to, at best, take the edge off the pain that is caused by the nerves growing back. They cut a lot of major nerve routes that run along the ribs. I had not really been warned of this and have never experienced it in previous surgeries. I am not a very happy camper. đ
Thank you for continuing to keep me in your prayers for healing.
Love always, Sam xo
05.21.2012
Hi everyone,
I can’t believe it was a little over a week ago when I was in the ICU post-op. I left the hospital on Wednesday afternoon and settled into my cousin Emma’s home about 20 minutes north of Boston. The photo below is the work of my wonderful welcoming committee, Molly, Owen, Emily (and Dylan just out of the frame!) they covered my bed with stuffies. It was definitely the best sleep in recent memory! I am still on a good deal of pain medication but trying to wean off a bit more each day. I went from not being able to walk more than a few feet down the driveway on Thursday to now doing stairs and a few good laps of the driveway. Baby steps!
I’ve felt so relaxed here and am so grateful to Emma, Jim and the kids for making me feel so “at home”. The kids take turns reading aunty Sam bedtime stories every night. It’s great. Emma has a wonderful group of friends who have been helping her with the kids as well as dropping off goodies for me. Is there anything more powerful than a girlfriend?!
Aunty Phil (emma’s mom) took over the reins from Alison and Jesse on Tuesday and has been a stellar caregiver. In addition to being great company, she brings me tea in the morning, makes certain I am doing my walks and keeps track of all my pain meds! She left today to go back to her home in upstate new York. I will miss her! She will be back on Friday to greet my mom (her sis) and the plan is for the three of us to spend the week with her in new York.
My cousin Lisa came out for the day yesterday all the way from upstate NY – I’ll see her again next week. My cousin Dave (a radiology resident here in Boston) also took time from his insane night shift residency schedule to visit me in hospital as well as man the BBQ here at Emma’s yesterday to help us all celebrate aunty Phil’s birthday! Surgery notwithstanding, it was just great to have quality family time.
I won’t lie, the surgery was tough! I was in more discomfort post-op than I anticipated. I had hoped we could save some right lung but I was mentally prepared to hear that it had to come out. I’d rather know they got it all out than feel they may have missed some trying to save lung. Aside from scratching Machu Pichu and northern India off my bucket list (high altitude), I have been assured that life should resume to 100% normal. That’s ok by me.
I can’t say enough about the amazing nurses and docs at Brigham & Women’s. Wow, they were amazing. Like a well oiled machine prepared for everything. One night I woke up feeling like I could not catch my breath – my nurse Wilma (from Nairobi!) snapped to action not only reassuring me that all was ok, but propping me up to pat my back (to induce coughing). Then administering what we started to call “the lung bong” which was some sort of broncho-dialator and turn on the ICU bed that vibrates like a cheap motel bed (again to help loosen any accumulation in the chest). It’s amazing how many tricks they had at their disposal! I guess they’ve seen it all.
I’m so glad that Al an Jesse were able to keep everyone up to date on my progress last week (even though that included a bowel report!) I could definitely feel all your prayers and energy surrounding me. Thanks for all your amazing emails and messages. I am still catching up!
So what’s next…? Well, rest and recovery first and foremost. I’ll be out here on the east coast until mid-July. We checked my tumor markers right before surgery and right afterwards and they came way down. We’ll probably wait until I get home to check them again to see if they come down to a normal level. If so, then we basically wait and watch carefully with routine blood tests and CT scans. If not, chemo may be something we’d consider again. Fingers crossed and prayers that this will not be the case of course. The surgeons felt they got 100% of the tumor cells out and anything microscopic was marinated in the chemo wash. That’s the best we can hope for!
Sending you all my gratitude and love for walking with me through this, being by my side with your prayers, love, funny and sincere emails, for supporting those who support me, and for being the best squadron of angels anyone could ever hope for or deserve.
Love always,
Sam xox
05.15.2012
Moving right along. Sam moved to the step down unit Sunday and has now graduated to full diet, no catheter, no epidural. There are still waves of aches and pains from the incision sites radiating to her shoulders but it seems to be managable on oral pain killers. Rumour has it she may get discharged tomorrow!
With Alison’s hair salon skills Sam and her were able to rig a seat in the shower and get Sam’s hair washed this morning. Big news if you’ve been in a hospital bed for 6 days! She’s walking around without the IV pole and no walker. Unfortunately Alison had to head off a little while ago to get back home to the kids. More unfortunately I also have to leave in about an hour. Care has now been passed on to Sam’s auntie Philipa (arrived from upstate New York yesterday) and her cousin Emma who lives close by.
Updates should soon start coming from the patient herself.
Off to the airport for me.
Ciao,
Jesse
05.13.2012
We have movement!
Of the bowels that is. Sounds weird but after this type of operation your guts tend to turn off. Until they start moving you can’t eat. Too much risk of chundering and maybe aspiration into the remaining good lung. I’m sure Sam will kill me once she has her strength back but I’m happy to announce that she has finally pooped since getting out of surgery! (I’m sure you’ve noticed that I’m very obviously not as gifted in words as Alison if you happen to read her last blog entry. If you haven’t, you should. Truly beautiful).
Her diet can now start with clear fluids. Clear juices, broths, jello (not just the standard hospital green flavour but the red one too) popsicles. Mmmmm. If she doesn’t cramp up or get nauseated we will go to full fluids. Thicker soups and shakes etc. Last step will be full diet. That’s probably two or three days away.
Sam has been off her oxygen all morning. Breathing fairly well but still getting nebulizer treatments. Like an automatic water bong that comes out of the wall (but not quite the same effect). It vapourizes meds for her to inhale and open up her airways. It also loosens up some of the crud so its easier to cough up.
The chest tube on her good side is draining way less which is great. Once it stops all together it can come out. Not sure how long that will be.
With all the progress the move to the ward is almost set. Should be this afternoon. I think Alison and I are both looking forward to moving out of ICU. Between us we are here from around 8am to midnight and it’s quite bright and noisy with all the monitors and commotion around. I must say, Alison makes it as cozy a place as it can be for Sam. It’s that best friend touch that is priceless. Lucky for all of us.
Sam is sleeping again which means I’m puttin headphones on and playing Angry Birds.
Later.
Jesse
05.12.2012
It is humbling to sit, wait and watch someone you love recover from a major surgery. In the beginning a smile, wince, frown and expression of anguish are welcome bits of information that help in our efforts to understand her needs. Everyday we try to facilitate and provide the most compassionate care possible – the nurses listen well and do just that, and we are grateful.
Jesse and I sit for hours in the ICU with her, he more than I, and it reminds me that in every moment we are witnesses to courage and resilience. And I get the added benefit of experiencing his love for her as he watches her breathe, checks the monitors and questions any subtle changes in her body. I like getting to know Jesse in this way. He is a good man with a nurturing strength. Practical and patient. It is a joy to watch him love her.
We are experiencing life in its most fragile state. While sitting here, we are available to do whatever is needed. Most of the time nothing is necessary, so we wait, read, apply chapstick to her lips, wash her face, adjust a pillow, act as a voice to request additional medical care or we simply smile, hold her hand, and hold space while she does all of the real work healing her body. Jesse’s responsibly could be seen as heavy as he has a deeper understanding of the nursesâ and doctorsâ comments and what the bells and whistles of the equipment mean – but nothing seems to phase him. At times I am just here trying to be patient with myself, trying to forgive the maker of this disease and visualize her health and long life.
Sam is doing well: Tubes are being removed daily, she is sitting up and now going for occasional walks around the ward. So, she is making progress and is on schedule with her recovery. No surprises so far and this is good. She is now talking a bit more, has little throat pain, no more nausea but a little upper chest pain which is being well managed by medications. All normal signs. We do get smiles, thumbs up and random peek-a-boos through her sleepy eyes. She apologized today for not being more entertaining which made me laugh – then entertained! This is good and she is getting better!
I think of the 100+ people following this blog, waiting for news, wanting to help. I am aware of your love for Sam, the distance and the powerlessness that I would feel if I was so far away from the day-to-day knowing. Many of you have expressed that struggle. I am appreciative of the space that Cindy and Siri have provided by creating his website so that we have a common platform to share and come together in our encouragement and joy at all of her successes.
I wonder what it might be like for Sam’s mother, Jennifer, to sit and wait at home in Vancouver and honor her daughterâs request to stay there until she is ready to call in the big love and care from Mum. As for Dad, Arnold, I would imagine it is similar for you too. We will do a better job of calling you regularly with updates.
Half the time I think I want to respond to texts, emails and calls but I don’t. There is no other reason than I never know quite what to say. It is hard to express the excitement when you are at peace without pain or relief that everyone says she looks so good or how humbling it is when she says thank you for brushing her hair. Your emails and blog responses help pass the time and bring a smile to my face and calmness in my heart. I am excited for her to read all of your comments. This blog is the journal of this journey – whenever she is in doubt she can review it all.
As always, Jesse will give you the medical updates. It is a relief that he is able to translate, troubleshoot and deeply understand what is happening to her body. What I can share with you is my belief that her spirit is strong, that she has done incredible work over the past 5 months and she has pressed up against her real life in the most unimaginable ways and broken through. Her breaths with one lung will be deeper than what I will ever take with my two.
When I sit in her room I try to bring as much as I can from each of you, as this network of light and love is a force as powerful as Samantha herself. I have read and watched Sam absorb all of your intentions, prayers and offerings as they have played such a wonderful role in the expansiveness of her spirit and health. I will do my best to bring your loving presence to her everyday.
Ten years ago my mother told me that this process of care awakens humility and meaning and she called it sacred. She has been a nurse all her life so she should know, and she is right.
I know Sam will send her own update soon. I am really looking forward to that.
With love,
Alison
05.12.2012
It is still morning but we are in post op day 2, ICU day 3. Nasogastric tube came out this morning! As long as Sam doesnt get too nauseated it will stay out. For now, still no food until her guts start moving again. They had her stand and slowly walk around the unit. Only one lap but its progress. They also just took out her central line which is just a really big IV in her neck. All good things.
One of the chest tubes also came out this morning. Shen still has another one on the other side.
We are left with 2 IV’s, an epidural, and the catheter. ( I forgot to mention the arterial line in her wrist came out last night. It was supposed to stay in a bit longer but it got plugged and they pulled it early. Just Sam’s body saying “get me the F@#& outta here!).
Sam still feels heavy in the chest. She’ still on oxygen and needs to cough a bit more to clear out her airway. It will come. She’s sleeping for now but may go for another mini walk later. With any luck we can move to the step-down unit tomorrow.
So far so good.
Jesse
05.11.2012
We are now fully in ICU. Lots of tubes but Sam is tough (trust me, I know)! They took out one of the internal heart monitor/catheter and hopefully will take out the nasalgastric tube tomorrow. It’s like having a hose the size of a sharpie in your nose down to your stomach. Not fun but it will prevent her from aspirating if she vomits. Nausea is not bad today. Still getting lots of drugs but they sat her up in her bed for a while which is good. They are hoping to try her on her feet tomorrow.
No food yet and her mouth is really dry so Alison and I feed her ice chips. She can actually do it herself but I think she’s letting us feel useful. Either that or she likes the “feed me grapes” Cleopatra look. Her breathing is a bit laboured as expected. It will improve slowly as she moves more a can cough a bit more to open up the airways in the good lung. Other than that most of the day is the three of us sitting in a room not talking to each other. Sam sleeps, we read and try not to wake her. Its like three way silent treatment.
I won’t update everyday but will try to give news if there is any.
Jesse
05.10.2012
Ok,
Thanks for waiting. Sam went down to the pre-op at 630am today. For whatever reason they didn’t start operating until 840am. At 10 ish Alison and I are told Dr. Sugarbaker is coming up to see us. (“that’s fast for a 5 hour operation?”. . . prepare for extreme bad news in my head). He says “who’s the health care proxy?” Again prepare for self mental meltdown. Apparently the tumour is extensive and he needs to do an extrapulmonary pneumonectomy. Translation is removal of lung and lymph nodes(as planned) plus part of the diaphragm and part of the lining around the right side of the heart. We okayed it.
3 1/2 hours later we are told again that Dr. Sugarbaker wants to see us. He said he was able to remove all of the visible tumour, do a full chemo wash and that he is optomistic. I can’t give you stats on survival or post operative complication rates. All I know is that Sam has made it through at least this part of the fight. I can stop chewing on my tongue and pacing around like a junkie for the moment. Alison and I are just waiting for her in ICU. She will be here a day or two then move to the ward. That’s it for now. Next update will be hopefully come from Sam herself.
Thanks for all the support.
Jesse
05.09.2012
All Checked in. Samantha is in good spirits. We all decided to pile into Sam’s hospital bed for evening story time. The nurses had other plans.
–Alison
05.08.2012
Hi everyone,
We’re in the final days before surgery. Jesse and I have been pretty busy here in Boston running from appointment to test etc. We had a nice afternoon with my cousin Emma and her kids yesterday in the sunshine. It was great to have some “normal downtime”. The kids are excited that aunty sam is coming to stay with them for a few weeks – I am feeling pretty special đ
We met with Doc Sugarbaker today to go over a few questions and his game plan. On the downside, it does not look like he will be going the minimally invasive route as I had originally thought. Not sure why this has changed, but he felt he really wanted to get in there with his own eyes and hands to be as thorough as possible. They actually remove a section of the 6th rib under my arm and towards the scapula. The incision will be approx. 6″ (further qualifying me for the Tim Burton award for fabulous scars!) Oh yeah, it’s gonna hurt but he has assured me they will keep me well medicated and comfortable. Apparently you won’t be able to see that I am missing a rib.
His plan is still to get in there and assess the situation to see how much of the lung can be saved. He will only know when he is in there. He is the best and has seen more cases than anyone so I am in qualified hands. He is also a nice guy and according to one of his associates we met with, he is a total monster for detail. A nice trait in a surgeon I think. The surgery will be anywhere from 3 hours to 5 hours depending on what they decide to do. The heated chemo is one hour of this. As draconian as it sounds, applying chemo directly in a cavity (lung, abdomenâŚ) is less toxic to the entire body and much more effective than systemic chemo. Also dependant on what they do is how long I will be in the ICU. Alison and Jesse will keep you all updated on the blog.
Tonight is the dreaded “prep”. Oh yeah, for anyone who has ever had colonoscopy or major surgery⌠they can attest to it not being a bunch of fun. On the upside, they have come a LONG way in 10 years with the stuff they give you to drink. For my surgery in Washington I had to drink 4 litres of the most foul tasting semi-salty cherry flavoured liquid (I’ll leave the rest to your imagination, needless to say it ain’t pretty). Now it’s just a little 5 oz lemon flavoured soda drink that didn’t taste bad at all.
Awesome.
We have two more pre-op tests tomorrow morning and then I get admitted in the early evening for an overnight in the hospital. They’ll be getting me up at 6am to get me all prepped for 7:30 surgery.
So the big question⌠how am I feeling? Well, still just anxious to get on with it. I am so grateful to be treated by the best doctors at one of the best hospitals. I can’t imagine someone who does not have a choice. I am grateful to have Jesse and Alison here by my side. I can’t imagine not having a hand to hold before being wheeled into the OR. I am grateful to know that I have a mighty force of angels praying for me. I can’t imagine someone who is alone. Despite the craziness of the past 6 months, I am grateful for all the gifts it has brought me: lessons, insight, appreciation of every moment, and above all else, the love all of you have bathed me in.
I cannot imagine my life without it.
Thank you, thank you, thank you for all your love and your light.
Sam xoxo
