Can it possibly be a tiny little Christmas miracle? Why yes, it can! But first, a few pictures from our Sunday breakfast with Santa, courtesy of Mom and Dad …
Yes, Zak was missing – he had to work. And none of my pictures with Mom and Dad turned out. But it was a delicious meal and nice to be out with the family, so thank you Mom and Dad! It was great timing, as Ben had had a rough few days and was just starting on an upswing. We went home afterwards and he rested …
Now, about this good news!
Yesterday Ben and I had no less then four appointments in a row throughout the Lower Mainland (five if you count the fact that we had to renew the handicap pass), and at not one of those appointments did we receive any bad news. So I consider that GOOD NEWS!
The first appointment was for blood work, and since no one mentioned anything about the results it is safe to assume that there were no significant or scary changes. Good News #1.
The second appointment was with Dr Y, the oncologist in Burnaby who gets the final say each time as to whether or not Ben will receive another dose of Nivolumab. First of all, he noted that Ben looked significantly better this appointment then he did at the last one. Which is true. Over the last three days or so his overall wellbeing has definitely improved. And he gets another dose! Good News #2.
Next … Dr. Y gave Ben a quick ‘hands on’ check and said …. wait for it…. that his liver felt smaller yesterday then at the previous appointment. Yay!!!!!!! What he actually said was “I’m not a CT machine but your liver feels smaller.” So I said, “Wait … you’re NOT a machine? Cuz I totally thought you were a cyborg because you have no feelings …” Kidding. I didn’t. But I thought it. And then I focused on the fact that BEN’S LIVER FEELS SMALLER!!!!!!!Good News #3. We left Burnaby General with a jaunty skip in our step (or walker. Lol).
From there we went and renewed the handicapped pass, which I dream of cutting up into teeny tiny pieces and throwing it into the wind. Hopefully that will come later.
Off to VGH we went, where Ben had an ultrasound to check on the fluid in his stomach to see if it needed to be drained. And lo and behold there is no increase in fluid. In fact, there is hardly any fluid there at all and there is no need to drain! And maybe, just maybe, it will reabsorb itself into Ben’s body. Good News #4.
Down the hall we went to visit with Dr K. He was almost on time yesterday. Good News #5. OK, you may be thinking that I am pushing my luck by labelling Dr K’s promptness as a good news point, but if you had been sitting for hours at appointments on a regular basis, month after month, you would consider that good news too. So…. Good News #5!
And then, in walked Dr. K. And he was pleasantly surprised to see how good Ben looked, and commented on it too. He also commented on the fact that I was laying in the bed and Ben was sitting in the chair, but gimme a break …. I’m tired!
Our meeting was brief and when he looked at previous scans he commented that the tumour in Ben’s “stomach” (I still can’t recall what its called where they actually found it) could in fact have been there before starting the Nivolumab. Which means …. wait for it …. that, at the very least, there is no reason yet to assume the Nivolumab isn’t working! Woo hoo! GREAT NEWS #6!
So there you have it. A Christmas Miracle that will allow us to enjoy today and tomorrow and appreciate all our blessings.
May you all be very blessed this season, and take a moment to remember why we celebrate.
Luke 2:10-11 But the angel reassured them. “Don’t be afraid,” he said. “I bring you good news that will bring great joy to all people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord”.
Thank you to Christine and Rob who sent us in a limo last night to enjoy the Christmas lights of Surrey. It was a great way to chill out after the tough day we had. Ben had been unable to do the MRI earlier because he was simply in too much pain. He ended up doing a CT, and we figured the results were less then ideal when the radiologist neatly maneuvered around our question “what did you see?” She told us that Dr H would call us later. Hmmm.
Dr H did call later, but first we were treated to this:
Once we got home I spoke to Dr H on the phone and she explained that there had been rapid progression with the disease. There is an additional large tumour in Ben’s “stomach” (not really his stomach, but I can’t recall the medical word she used). Somewhere in that area. As we later found out, there had been no sign of that tumour even two weeks ago.
This morning The Saint-Onge Five packed up and headed off to see the thoracic surgeon about the fluid build up in Ben’s chest. He talked about doing surgery and told us it would be a four week wait to get the surgery once Ben made a decision to do it (if he decided to do it). Another option is to have a respirologist continue to drain the fluid like they did in the hospital. We said we’d think about it, and we left.
We drove down to see Dr H who had asked me to bring everyone in to see her today. She said she would fit us in. That is probably never a good thing when a very busy specialist offers to “fit you in.” Barb arrived at the hospital, and the six of us met with Dr H. She re-explained what she said about the disease progression, and then she said (and I write this with Ben’s full knowledge and permission) that there is no evidence to suggest the Nivolumab is working, and if that is the case he may only have weeks to live.
I thought we may actually escape with an uneventful week, but apparently that was not to be.
I believe I glossed over the worst parts in my last post, including the fact that Ben struggles to walk. This is something that came on in the hospital but we assumed it would pass. It has not, and seems to have gotten worse. He also continues to be exhausted and thoroughly drained of all energy. This is a cruel disease.
Saturday night seemed fairly tame, however, and Ben was sleeping when I left to pick Jaime up from work. She literally called for a pick up about 30 seconds after I had just taken a sleeping pill, so I madly dashed off to get her before the effect of the pill hit me. Jaime was happy and we chatted on the way home, and I went right off to sleep.
I’m still not exactly sure what happened, but a case of the “sads” obviously hit Jaime as soon as I fell asleep, and I was awoken by her crying by our bed. I had no sooner made room for her in between us when the worst pain imaginable struck Ben. I can’t even describe it – it was worse then anything that I have mentioned before. And believe me, there has been some bad pain.
This time it had nothing to do with his right side. The cordotomy was a success and he cannot feel pain on the right. This was all in his sacrum and it lasted for about 8 hours. It definitely warranted a trip to the hospital but I could not bring myself to force him back there when he had just made it home. And so we all cried, all night, until finally it passed and Ben fell asleep and slept for the entire day. Sweet relief for him.
On Sunday Dad and Kirby moved the recliner upstairs to our bedroom for Ben, so that he has the option of the chair or bed and the bathroom is there too. I bought a second recliner on Monday (to be delivered tomorrow) to be put in the family room, so that Ben also has a place to sit downstairs when we have to go for appointments and he needs a break before going back upstairs. Mainly his “suite” is now our bedroom, and we have set it up with two extra chairs for guests. Its a bit strange, having visitors in our bedroom, but it works out better for Ben. Connie and Kirby came by for a visit last night and I’m sure the neighbourhood would be abuzz with gossip if they knew that another couple joined us in our bedroom with wine. Lol. I didn’t take pictures. Haha.
Today we went back to VGH to meet with the doctor at the pain clinic. We had to take the wheelchair, which Ben hates. To make a long story short, the doctor is ordering an urgent MRI tomorrow to see if this effin’ disease has crept into Ben’s spine and is causing his weakness. There was more discussion of radiation and blah blah blah. After awhile we both want to scream “STOP!” How much more is Ben supposed to endure?
Our drive home was, well, sad. We talked about the possibility of the worst outcome, and how to talk to the kids. And how it sucks that this is happening at Christmas, or at all. And we cried. And cried. And cried some more. And then we laughed a bit and picked up sushi (for Ben, not me. I think its gross.)
We went home and Mom and Dad came over and joined Ben and Raegan for the evening while I went off to spill my guts to the psychologist and hope that this time he might have figured out a way to solve this problem. He hasn’t. But the four of them enjoyed themselves while I was gone – talking and laughing until Ben fell asleep again.
That is where we stand for now, waiting for another MRI that Ben will have to endure (he is extremely claustrophobic) and more potentially devastating news. In the meantime I am going to go and crawl into bed with My Love and snuggle him tightly, and hopefully dream about better days.
Well now, that was definitely a crazy week. It started on Monday with Ben becoming increasingly confused and saying strange things. It was humorous at first and seemed to happen only as he sort of drifted between that sleep / awake state, so I wasn’t too worried about it. We managed to capture a couple of pictures that evening at home. This is my favourite:
On Tuesday morning we went to the follow up appointment with the respirologist at Jim Pattison. Before we left, we snapped a few pics of early morning love, since the plan was to head right to Vancouver General Hospital afterwards and we knew Ben would stay in hospital for a few days:
Zak is shocked at the early hour!
Rae Rae and Papa
Jaime and Daddy
While we were waiting for the respirologist appointment Ben started sending some strange texts that didn’t make a lot of sense, and he began seeing things that weren’t there. He seemed a bit ‘off’, but he had his chest xray and met with the respirologist (nothing new to report there), and then off we went to VGH to get him checked in.
The only way that Ben could get in on such short notice for a cordotomy was a planned admittance through Emergency. We had been given instructions to go to VGH Emergency and complain about leg pain (which, as you know, was intense and often unbearable for Ben, so there was no concern about having to ‘lie’.) However, like every Hospital Emergency Department it was no easy task getting them to admit Ben and to call the neurologist like we had been instructed to have them do. I think the admitting clerk thought I was lying when I insisted that the neurologist wanted to be contacted immediately. It was quite frustrating, and they made us sit in the waiting room for a long time.
While we were in the waiting room, Ben’s hallucinations and disorientation became worse. He pointed to a poor fellow in a wheel chair and insisted the he (Ben) had driven that fellow around while he worked last year. Meaning that the fellow in the wheel chair was a bad guy. I said “No you didn’t” and Ben said, “yes I did.” I said “No you didn’t” and Ben said “YES I DID.” So I said “Where?” and without missing a beat he said “North Burnaby.” Sigh. No, he didn’t. I’m glad the guy in the wheel chair didn’t hear. He also asked me if I had confessed to all my criminal activity. I just said “yes” and that seemed to satisfy him. Then Ben started to drift off while he was sitting in a chair, and suddenly jerked and threw his IPhone onto the floor. Thank Heavens for Otter boxes. No damage done.
Eventually they took Ben in and gave him a lovely bed in a hallway. Good times. Ben slept until one of the Neurosurgeons came to see us. He was an amazing doctor – really kind and he ensured Ben was well cared for. He gave us his phone number and always returned our calls, and he visited Ben several times over the next few days. (He even feigned interest when I told him the story of how Ben and I met, and said it was a good story. I liked him.) He looked and talked like that actor from ER (the tv show) who played the Croatian doctor. I fell a wee bit infatuated. Haha.
Dr. Croatian (can’t recall his name) got Ben checked in and put into a private room where Ben pretty much slept for the rest of the day and night, with a little break for Thai food brought to the hospital by Barbara. (By the way Barb, I found the money I gave you shoved into the bottom of my purse.)
On Wednesday morning (December 9th) I left our house at 6:15 am to ensure that I arrived before the surgery. I got there in plenty of time, but when I got to his room he was gone. Luckily a nurse saw me walk in and said they had just wheeled Ben over to the elevator, and that I could probably catch them. I did, and its a good thing too because Ben was totally shaken up. It seems that he had been fast asleep when all of a sudden a bunch of nurses rushed him, woke him up, started washing him down and talking about getting him down for an angiogram. Since Ben was not there for an angiogram he freaked out and made them stop, which stressed the nurses out because neurosurgery was calling for Ben and he refused to go. It was a bit of a gong show.
Eventually we got downstairs, and Dr Croatian walked in and all was right with the world.
Glossing over the details that I will let Ben tell you about when he’s feeling up to it, the bottom line is that he had the cordotomy and he was in the CT room for much, much longer then expected. Some random doctor finally approached me and asked me if I would like him to go find out what the hold up was. It turns out that they were halfway through the procedure and had knocked Ben out briefly in order to sever the nerve, but when they tried to wake Ben up he wouldn’t cooperate. (Eventually he did).
The procedure itself seems to have been a success in that they severed the correct nerve, and Ben no longer appears to have any pain. Or at least, it is much less. However, for whatever reason Ben has been extremely weak since the procedure and is now unable to walk unassisted. We are hoping that will remedy itself.
On Wednesday night around 11:30 pm the nurse called to tell me that Ben’s blood pressure had dropped to 89/64 and his heart rate was 140. They were concerned about a blood clot again so they took him for a CT and a clot was ultimately ruled out. Then they moved him to a unit that is sort of an ICU but a slightly less serious version of it. I was just pulling out of the driveway to go back to the hospital when Dr. Croatian called me to give me an update and let me know that he would not release Ben to go his appointments at Burnaby General Hosp unless his blood pressure came up. In an effort to straighten all that out, they started giving Ben IV fluids, and by the time I arrived at the hospital things were looking up and Ben was finally coherent after three days of talking about men sitting on television sets, and reminding me that we had five children and one was named Tinzaparin. Some of the stuff he said did give me a chuckle. He was so out of it that I climbed into bed with him and amused myself by taking silly photos while he slept.
Two good things happened while Ben was in hospital …. one was that his friends from Ottawa came to visit with him and spread the love (I can’t believe I forgot to get a picture), and the other was that Dr F and Dr B arranged to come visit Ben at our house after he was released from hospital, so that Dr F could bring his cool guitar to show Ben. (As it turned out, I had to cancel them because Ben didn’t get released on time, but they are going to try again this week. Super nice of them to offer though).
Ultimately Ben became stable enough to be transported to Burnaby General on Thursday to meet with the oncologist out there and get his blood work done. It took a bit of convincing, but Dr. Y finally agreed to go ahead with the Nivolumab treatment the following day. He had been worried that since giving Ben the first dose, Ben had been hospitalized twice and therefore he was assuming that it had to do with the medication. But once I explained the reasoning for the hospitalizations I convinced him that it didn’t have anything to do with the Nivolumab.
And so, on Friday, Ben received his second dose. Yay. That was a happy moment, but overall Friday was a very difficult day. Not gonna lie.
Ben was just so exhausted that walking even short distances was too much without rest.
In any case, he received the treatment and we came home where the kids were super happy to have him back.
Since we got home, Ben has been really tired but I am hopeful that he will slowly regain some strength over the next few days. We have numerous appointments scheduled for the week of Christmas including “Family Chemo Day” on Christmas Eve, but most of the upcoming week is free to allow Ben to recuperate a bit and spend time with the family.
I finally have the brief opportunity to let everyone know what our week looks like before it actually happens. Having said that, our best laid plans always seem to get thrown off, but it currently appears as though the plan looks like this:
Tuesday Dec 8 early morning – Ben will go for a chest xray and see the Respirologist in the morning for a follow up regarding his lungs.
Tuesday Dec 8 late morning – Ben will go to VGH to be admitted
Wednesday Dec 9 – Dr H will perform the cordotomy, which will go swimmingly well with zero complications and Ben will be pain free
Thursday Dec 10 – Ben will be released from hospital and will jog out to the parking lot while I struggle to keep up with his pain-free jaunt
Thursday Dec 10 – Ben currently has an oncology appointment and blood work scheduled for the morning in Burnaby. He won’t be able to make this appointment so it is my plan to beg them to change it to the afternoon. Fingers crossed.
Friday Dec 11 afternoon – second treatment of Nivolumab
Saturday Dec 12 – rest, recover, and revel in Ben’s lack of pain while the Nivolumab continues to course through his veins and heal his body.
Sunday Dec 13 – spend an hour in church appreciating what we do have, and thanking God for all our doctors, our family, our friends, the constant demonstrations of love, and all we have been blessed with in our time of need.
I’m scared today. A lot has happened over the past 8 months that has scared me and continues to do so, but this is kind of different. I’ve been presented with realities like “you have cancer”, “you have a tumour”, “you have a blood clot that must come out”, etc etc etc… No brainers basically. This is what you have and this is what we have to do to intervene at this point. No major choices to make.
First of all, let me tell you that I had a shitty week. I spent Monday through Wednesday in the Surrey Memorial Hospital emergency ward because of shortness of breath. Some other stuff happened too, I think, but Wendy would remember that better. I felt shitty, to say the least. I may have been getting pneumonia, I’m not sure. They eventually drained almost a litre of fluid from the space between my right lung and rib cage. I felt better after that and was released. That was a long, boring and somewhat traumatic 3 days. It kind of wore me out for a number of reasons. I won’t get into them at this point. I’m tired of complaining about them. Lol.
On Friday I was given a choice to make that can and will affect the rest of my life, however long that may be. Based on the tone and comments made by Dr. H., he was suggesting that I don’t have much time left (that’s where knowing your audience comes into play). He even commented on Wendy’s enthusiasm with respect to my recovery and laughed. It didn’t really sink in until after the appointment. I’m not sure if I’ve mentioned this in the past, but that’s a major peeve of mine when visiting specialists. They make me feel like death is right around the corner and they are here to help me get there in relative comfort. The problem is, I don’t want to die right now, and I was hoping they could help me get through this rough patch until the next one. Clearly we don’t see eye to eye.
Okay, wait a minute. I just got sidetracked. Here we go again…
On Friday I was offered a chordotomy, which involves severing a nerve in the cervical spine to eliminate pain on the right side of my body. It is a permanent procedure. There is no going back. I am apparently a good candidate for the procedure as I am in palliative care and my pain relief threshold through narcotics has been reached. Blah, blah, blah.
The reason I am scared is simple. I want to pull out of this death tailspin and get back to living, but every Doctor I see makes me feel like “this is it. The end of the ride is near and it’s time to get off.”
The chordotomy will remove the sensations for temperature and pain on the right side of my body, from the neck down. That means down my right arm as well. That means it may affect how I play the guitar. As I write this I see how stupid that sounds but it’s still really important to me. I don’t want to be in pain and I hope the procedure works, but it may mean that I won’t be able to feel guitar strings anymore. I’m not sure. The Doctor seems to think that I’ll be fine and should feel them but no one is 100% sure.
Another reason I am scared is because I can’t seem to pull out of this tailspin right now. The mental one and the physical one. I can usually pull out of the mental tailspin pretty fast. I would like to think I am mentally strong but this one is dragging on and on. I see my body melt away in the mirror and I watch the numbers on the scale go down everyday, and I have to admit I feel like my body is failing me. I get focused on that and then I can’t get back on the mental fast track. I’m finding it really hard this time around. Maybe that’s why this chordotomy thing is bugging me so much. I don’t know.
So if anyone out there has some spare mental strength they can throw my way, I would appreciate it. I’m having a really hard time right now. This has been the roughest patch so far.
Monday morning rolled around this week, and it started with plans to get the remainder of the Christmas shopping done with Mom. Unfortunately, Ben’s pain increased greatly on Sunday night, and hadn’t let up at all by Monday morning. In addition to that his feet looked like they were turning purple and his breathing had become laboured over the last few days. Those things led me to contact the Home Care nurse (Surrey) and the Pain and Symptom Management nurse (Vancouver). Both advised that Ben should be taken to Emergency, as they were a bit concerned about the possibility of another blood clot.
So shopping day ended before it began, and off we went to Surrey Memorial. Unfortunately, for some unknown reason Monday afternoon seemed to be the busiest day of the year for emergencies in Surrey. Talk about a packed ER. And the administrative staff was less then congenial, which made me less then happy.
In any case, Ben got in and got hooked up to the usual equipment and I was rather dismayed to see his oxygen saturation levels at about 88. And that was with extra oxygen. (I have learned far more about health care then I ever wanted to since this whole thing began, and I know that oxygen saturation levels of 88 is very bad. Expecially when you are being given extra oxygen.)
We remained there for hours while Ben suffered in pain until the ER doctor finally checked him out and sent him for another CT scan to look for blood clots. Long story short, there were no visible blood clots but it turns out that Ben was storing about a litre of fluid between his chest wall and his right lung. The assumption was that the fluid was the reason for Ben’s breathing difficulties and there was the possibility of Ben having a respiratory infection as well, so they started him on antibiotics.
Ben was understandably extremely upset to be told by the doctor that he could not go home. According to the doctor, Ben would be back within 12 hours if he was sent home. And so Ben stayed. Reluctantly.
Ben did not get much sleep on Monday night, and by Tuesday the only thing that had changed was that his oxygen saturation levels seemed better. Unfortunately, we also discovered that the hospital food had not improved at all since his last stay. What did cheer him up a bit was when I brought Jaime to the hospital for a quick visit because she was leaving for Vancouver Island on Wednesday and won’t be back until this Sunday.
Daddy / Daughter love
Jaime and Ben
Zak and Grampa also made it by for a visit, but I wasn’t there when they were at the hospital so there are no pictures. Why wasn’t I there, you ask? Well, because I was busy at the airport picking up this surprise visitor who flew in to bring a little cheer to our lives …
Beth – showing Ben the Love
Beth spent many hours at the hospital with Ben and I on and Tuesday and Wednesday. Thank you, Beth.
On Wednesday morning Beth and I went to a follow up appointment (for me, not Ben) that was booked with a specialist (Dr. F) and couldn’t be changed.
(The background story here is that a few months ago Dr. B had referred me to Dr. F to deal with one of my crazy hypochondriac-type issues. The two of them happen to be personal friends, and Dr. B mentioned to me at the time that Dr. F is an avid guitar buff. So on the occasion of my first appointment with him a month ago, I had told him the story about how Ben and I had met Doyle Bramhall II on our anniversary in September. Turns out he is a huge fan of Doyle. And incase you have forgotten, here is a reminder of who Doyle Bramhall II is …. )
So, when I was finished my follow up appointment with Dr. F on Wednesday, he asked me how Ben was doing and he asked whether or not Ben had been able to play any guitar lately. He then went on to tell me that he owns the same kind of guitar played by Doyle Bramhall II. And then, this kind man (who has never even met Ben) told me very sincerely that he would be happy to bring that guitar over to our home to let Ben play it. Can you believe that he is willing to do that for a total stranger?! Just one more example of how truly kind people can be. Ben is a complete stranger to Dr. F and yet he is still willing to do this in order to bring Ben some joy.
I was so moved, and I am going to take him up on that offer in the near future. People continue to amaze me.
On Wednesday Ben remained in hospital awaiting a procedure that was supposed to be done at 11:45 am to remove the fluid in his chest. In the end it was cancelled because the ER doctor wanted it done by a respirologist. And so Ben waited. And waited. And waited.
Around 5pm the respirologist (Dr. L) arrived. He said that Ben had been on his list of “to do’s” all day but he had been working in the ICU. The poor guy was in a hurry to get out of the hospital to get to his 7 year old son’s Christmas pageant, but after talking to us he very selflessly decided to stay and do the procedure on Ben so that Ben could go home. Again … so amazing.
The situation was rather comical, because Ben’s current nurse de jour was a rather annoying young lady who talked far more then she listened, and she was quite distressed to discover that Dr. L planned on draining the fluid right then and there in the ER. Furthermore, the nurses talked about how Ben would have to remain in hospital overnight and Dr. L quite calmly muttered to me under his breath “Ben will go home tonight.” Haha. The nurse really didn’t know what to make of it.
Before Dr. L did the procedure, he showed me the CT of Ben’s chest and told me that even though there was a litre of fluid in there, it was not likely the cause of Ben’s breathing problems. Nor was the metastasis in the lungs. He really didn’t know what the causing the problem, but in any case he got to work, and this is what he drained from Ben’s chest:
Actually, there was even more then that but he had already sucked a bunch out of there to send off to the lab before this picture was taken.
Shortly afterwards Ben was released from hospital (Dr L was late to his son’s pageant), much to the nurse’s chagrin. And apparently she was so distressed about his release that she forgot to remove Ben’s IV. So when we arrived home, this is what happened:
Sigh. Nothing is ever easy. Anyway, Ben has a follow up appointment next week for a chest xray and another visit with Dr L.
On Thursday we got into the Christmas spirit a wee bit and managed to get some more decorating done. Ben played the part of Santa while Beth and I worked. Beth played the Elf. Lol.
That brings us to Friday. The day we went to see Dr. H about doing a cordotomy on Ben to ease his pain. By the time we arrived to that appointment on Friday, Ben had been suffering with substantial and sometimes extreme pain all week. It hurts my heart to watch, and much of what Dr. H had to say also very much hurt to hear. But at the end of the day he believes that Ben is a candidate for the cordotomy, and Ben has consented to having it done. There are all sorts of logistics to work out including how to get it done in a timely fashion, but the hope is to get Ben in there by next week.
The other thing that happened on Friday was the arrival of a gift from Ben’s troop mates, that came in the form of a photo book they put together. The book has old photos of each member of the troop along with current family photos. Ben was visibly moved to receive it and look at it, and so for those of you from Troop 12 who are reading this blog, “thank you for bringing some joy to Ben on an otherwise very difficult day.”