August 1, 2010
As you can see, it is Aug. 1st, and I am starting to write this blog, even though it will be over a week before I publish it. This past week has brought a few changes to our lives, but there are still so many unanswered questions we can't really talk to anyone about it. For now we will find the answers and then develop the plan to share it with our loyal supporters.
I must apologize to you in advance. This is going to be emotional, most likely more emotional than anything I have written so far. I get to write each part it as it happens - you will read it all at once. Please take your time, maybe you don't need to read it all at once.
July 31, 2010
We finally got some details from D. , Dr H's nurse, on the CT/MRI from June 28. The CT shows some increase in size and number of lung nodules - and the measurements of a couple have changed quite a bit. There is some irregular thickening of the bladder wall at the rear right, which could be cancer (although not likely metastatic?) or could be a build up of stones. Callum may get a referral to a urologist to find out exactly what it is. The spleen is still enlarged with some tiny low density lesions - could be cancer or cysts, they are too tiny to tell. There is some free fluid in the abdomen (not sure what that means). Kidney, pancreas and liver seem to be fine, and no lymph node involvement. In the areas of this CT scan (mostly ribs) there were no destructive bone lesions showing.
The MRI was good - there was a small increase in the size of the tumour at the back, but it wasn't really a significant increase.
We didn't tell anyone about these earlier as we wanted to talk to the Dr about what this all meant. You will find out more at the end of this blog!
You will remember that Callum started radiation therapy on his femur last week. The pain in his leg has been getting worse. When he started the treatments we still hadn't heard if Dr K (radiation oncologist) had received the x-ray films and what he saw in them. Finally, Thursday morning he called me and let me know the news. The middle of the bone at the site of tumour was eaten away - destroyed. There are a few things in the x-ray not clear, but it certainly described destructive lesions in other parts of the leg (thigh and shin) and pelvis - there are definitely changes in the bone that by the look of it goes with some cancer process. He emphasized that these are images only, and not confirmation that it is cancer. But there is a high probability it is cancer. He said that the funny thing is that the destruction is happening from the inside out. I have no idea what that means, what you do about it, or if it even matters!
He said that his goal is to help control pain and provide comfort care. He can radiate other areas as they become painful, but only for a while. He can't radiate the whole leg because it would destroy the bone marrow, which is already impacted by chemo treatment, and would likely kill him. They also want to keep the side effects to a minimum - quality of life is important.
He also said that the inside bone is very fragile - he can't weight bear on that leg anymore as he is at an extreme risk of breaking the leg - not a complication we need. And he confirmed in this phone call, that he does not foresee Callum ever weight bearing on that leg again. I was punched in the stomach again. We kind of knew that there would always be trouble with that leg, but we thought that he might, even for a little while, be able to walk on it again. ouch. ouch ouch.
It had been recommended to me that we look into bisphosphonates - they help with bone problems in patients with metastatic breast, lung or prostrate cancer. I asked Dr. K - he said they haven't any conclusive studies on the effectiveness for colon cancer (which I knew), so that they likely weren't covered (which I knew) and since he was leaving on holidays I could ask Dr H (medical oncologist) about them. They might help, he said.
He did make a referral for a bone scan, but it sounds like that might be a wait. Dr. K said not to worry about it as it would only be a baseline and wouldn't likely change the treatment plan anyway.
So.....comfort care, no more walking on that leg....high probability that the multiple lesions are cancer....and when I asked about life expectancy....he refused to say - would only tell me that he already way past his expected time.
As if that wasn't enough.
Wed we got a call from a social worker who wanted to meet us after Thursday's treatment. We thought it was likely the regular old check in since he was having radiation again. Boy, were we wrong! She wanted to tell us about the Palliative Care Team, and other services available to us. Palliative care, wow! I was pretty blind sided by those words, and I think Callum was too. From reading other people's stories, I know palliative care doesn't mean imminent death, but it sure brought that reality a lot closer to home that it had been! And when she asked whether Callum wanted his own wheelchair I thought he might lose it. He was really good - very respectful. But I think both of us were dumbfounded. We hadn't yet had the telephone call from the Dr - so this possibility was new to us! The other thing about Palliative Care is that is often, I think most usually, is offered when treatment is no longer happening. We don't know if that is the case this time....or ....................
Now, some good things came of this. She is sending in an application for Callum to have all his drugs (well, the ones on the formulary, anyway) covered through the palliative care program. She had Callum sign a form for us to get a disability parking placard.
And the scary part....she referred us to the palliative care team. The Dr is well versed on pain meds. The team is good. John is the coordinator for Callum. Ikes. I have tried for the past few days to wrap my head around it. I keep thinking I am being a drama queen - that I am making things worse than they really are. And then I realize that we have an appointment with the Palliative Care coordinator and nurse on Aug 4th. They are coming to our house. To meet with us. To see what needs Callum has. I see the value in this, and know this team will be a valued treasure to us. But we didn't realize we were at the point that we need this help. I guess we will find out for sure on Wed.
So, the big question for us is why the referral now? We didn't really think to ask that question last week. We will ask this week coming up. We are both unsure what the message is? Did the referral happen because Callum's mobility is limited and they want to help keep him as independent as possible? Is it because of the pain. Or our worst fear - is it because the disease is progressing so much that we must now accept the inevitability of death. Wow.....can't believe that is what it is. Don't they know Callum? Don't they know he is a fighter? Don't they know he has overcome so many things that this is just one more bump to him? Or.....is it time to say he is done getting over bumps....?
We have an appointment with the neurosurgeon on Aug 5th. to review the MRI results. We are all curious about what he will say, as in April he said that if there was any increase in the size of the tumour he would do surgery. But we are not sure what will happen if the disease isn't stable. And it isn't.....yet. Maybe the FOLFIRI will get it tamed down.
We meet with Dr. H on Aug 9th. I am sure it will be a very interesting visit. He has been so very positive and supportive through this it means a lot to us. We know that if there is anything we can try he will do it. But we also know that if he now says this is the end of treatment, then we likely have few options, if any. A sad thing to think about.
Signing off for now......
Tuesday, Aug. 3
I finally called the social worker at the cancer centre. The one we saw last week (S.) is on holidays (seems to be our luck this summer!), so I spoke with her covering SW (R.). He said that often they make the referral to the Palliative Care Team (hmmm, I think I will call them the PCT) so that we are aware of all the services available to us, can take advantage of what we need now, and know ahead of time of ones that we will need later. He was very reassuring, and said that S. is new at the cancer centre and had worked with palliative care at the hospital, and on the ward that Callum was on in January. He said she knows all the hoops and how long wait lists can be so is being proactive to get the ball rolling for us. We had a chat about how Callum is doing and some challenges there is in getting him to not bear weight on his leg. I will still remind him now and then, and let the medical professionals explain it to him again. I just don't want him to break it, I just don't know if he is strong enough to withstand a break and whatever comes with that.
Anyway, it was a huge emotional release to have that question answered. I had really got myself wound up about it. I did not feel well all day. Callum asked me to keep positive, but I bounce between wondering what reality is and staying positive. I will always support him, regardless of the situation. I just don't want to contribute to false hope.
Enough for today. I am physically and emotionally exhausted. And the PCT will be here at 9 am tomorrow. Stay tuned....
Signing off.....
Thursday, Aug 5
Well, it has been a weird couple of days. Wednesday we met with the Palliative Care Coordinator. She introduced us to the Palliative Care program here. It was certainly a scary experience - it usually means something when the Palliative Care steps in! The good part is that the program covers the cost of all of Callum's drugs, providing they are in the formulary. The only hitch is sometimes with antibiotics - they will only cover if you start with the cheapest and only go to the next one if the first doesn't work. Usually with cancer patients they will start with one of the most potent - and costly - antibiotic because they need soemthing that works really fast and is very effective. One thing that is strange to me is that the program also covers Boost, Ensure and some protein supplements. It was still a strange visit. Palliative Care is about symptom management and comfort. We will be looking at having railings put in the shower, and a shower chair, for Callum to shower without having to put weight on his leg. J. , the coordinator, talked about accepting help and having a list of things for people to do. She mentioned that people want to help, but don't always know how. She also talked about a personal health directive, and left the form for Callum to fill out. There is going to be so much more for us to learn, and so many more hard decisions! This is the part that frightened me the most! There will be referrals to Occupational Therapy and the Palliative Care Nurse. Maybe home care, too. Whatever we need, we will have a one stop number to call and they will get us what we need! Pretty cool! Except for the reason we have this real cool program....
Thursday we had a visit with Dr F, the neurosurgeon. It was an interesting visit as well. There are so many hard things to this now. We knew it was coming, but it is so hard. The decision we made today was to wait and see what the next MRI shows as tumour growth - it will be sometime the end of Sept or so. The June MRI shows some slight growth, but with the disease progressing, we have to think about the risks and benefits of brain surgery. He said he will do it when the symptoms and problems get worse, if Callum wants it. But he also talked about the alternative - don't do surgery, and possibly have a less painful death than treating it and letting the problems with other cancer sites get worse. I just can't see Callum quit fighting! But one never knows what will be the twists and turns in this journey, and I hate seeing him in pain, so I want him to be as pain free as possible. Crappy disease! I hate this!! It is horrible!! I just can't believe that our life is going to change that much in the coming months. But I guess it is.....that is reality. And many, many people have done this before. And so will we. So much to think about. So much to consider. It makes my head spin. It has been a helluva week, that is for sure.
Tomorrow one of the nurses comes to meet with us. It will be interesting to see what she says. I thought I would be ready for this....but I sure am not!
time to sign off.....
Aug 8
Well, we met with the Palliative Care RN and the occupational therapist on Friday. They are both nice ladies. We will be getting some rails in the shower and a shower chair to help Callum shower safely. The plan is for the RN to come visit once a week, even if it is a quick visit. She will do a quick check on how he is doing and make sure we have no issues. Part of their job is to prepare us for this part of the journey. It was really hard hearing things like "have the papers on the fridge in case home care comes and find him unconscious - it happens.". Now, I have thought about a lot of things, and some of those not nice things, but I never had that picture of Callum being that sick, and being unresponsive. I know it sounds weird, and I am sure it was in my mind, but not in that level of detail. I don't know what I was expecting would happen, but I hadn't thought about having to use a drug store that is close by and has long hours so we have a good chance of getting any prescription we needed on short notice. Do all of you have your personal health directive? Might be good to get one when it isn't in the middle of a crisis. We are thankful we did that a few years ago. Tomorrow we see Dr. H - we are not sure if he will be recommending to stop treatment, or to continue for a little while to see if the change in chemo has helped slow the disease progression again. I am sure we will have a few anxious moments tomorrow morning. Dr H has always been able to reassure us, and has been honest about quality of life issues, so we feel confident that he will give us good guidance.
Well, time for tea and bed.....
TTFN
August 10, 2010
Well, this post will be a little more upbeat than the previous - we had a good visit with Dr. H - who is so good at being realistic, but encouraging us to stay positive. I have so much respect for him and how he handles the tough stuff. It was Dr. H who took me for "the walk" and "the talk" about whether to continue with the supportive breathing machine when Callum was in hospital in January. He pulls no punches, but also doesn't make mountains out of mole hills.
Anyway, his plan is to continue with the FOLFIRI chemo treatment every 2 weeks. He seems confident that we can get the disease stable again and will book a follow up CT scan for end of Sept. Keep your fingers crossed!! He said the issue with the bladder may be stones or even some issues from the radiation and/or surgery in 2005/06. The post-treatment issues are something that everyone is seeing more often now that there are such good drugs to extend life. He will make a referral to a urologist and then he can talk with Callum about it and we'll go from there.
Dr. H called Callum a "tough dude" - even without the muscles of Schwarzenegger. He is so impressed with Callum, I guess with us. So positive and practical. Did you ever think that would describe us? Makes me giggle. But how else should you deal with this? Too little time to waste it being negative.
Callum has noticed a change in the pain level, but it still is quite painful. We are hoping that in another few days he will start to notice a bigger change and more relief - he was told it could be a week - 14 days to feel less pain. He is fatigued by the radiation but we hope it soon passes. He has a bone scan on Aug 17 - it will be used as a baseline scan, not diagnostic. There will likely be no change in treatment but when compared to future scans it can give an idea of any progression from now. We got a copy of the summary notes from the July 22 visit - he indicated the thinning bone in femur and shin bones looks like osteoporosis or osteopenia. It was the lesions in the femur (the one that is treated, and confirmed cancer by biopsy) and the one in the pelvis that he referred to as cancer.
Dr. H reassured us that the Palliative Home Care referral was just to help us and said to not read a lot into it. He said that with the amount of pain Callum was having they likely thought it would be good for us to get connected with them. I am more comfortable with this now, although I admit I was freaked out last week. In some ways it is good that this happened...I can better prepare for the next time. And unfortunately, and sadly, there will be a next time. We did have the shower chair and saskpole put up today. We will have to check into the handrail in the shower, and a removable shower head. Too bad he isn't a pelican, he would be fine on one foot!
So, I am feeling a lot more upbeat this week. I do feel like I have been through a hurricane, though! We had a nice quiet weekend and few medical visits this week. A great visit with friends from the Hat on Sunday was a nice surprise! We really are lucky to have gather such a garden of friends along the miles we have moved.
Time for me to sign off....thanks for letting me get this out of my system as it happened. Hopefully you have not been traumatized!
"A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world." ~Lois Wyse
TTFN
Lorna
