The summary comment on my report yesterday:
“There has been a marked reduction in size and degree of hyperintensity of the previously noted large myelomatous deposit in the distal femur and there has been complete regression of the previously noted smaller lesions within the proximal femur. A soft tissue focus of high signal is noted in the posteromedial soft tissues of the popliteal fossa but is likely representing a recess of the semimembranosus bursal effusion.”
My spell check has just gone into meltdown, but as it plainly indicates, things are on the mend.
Blood results are back. Para proteins are fine and everything else is good. The scans I had yesterday show a growth on the back of my knee that is related to arthritis, not cancer. So that is good. It also shows a significant reduction in size in the lesions.
Happy times. Thank you to all for your prayers and well wishes. Permission to rock on, granted.
This morning I have the scans on my leg. This will involve an MRI and an X-ray. Over the weekend, my leg pain has been easing up, so I have been feeling a bit more confident about a good result. My blood results should be ready now, so in about 48 hours, we should know if there is anything needs to be followed up.
I am still finding it hard to adapt to my body’s lack of energy. I did a lot on Friday, a lot on Saturday and we tried to do too much today, but just ended up in a heap this afternoon. I think it is getting better, but the lethargy still tends to creep up on me.
Just after lunch today, Elizabeth and I were able to take a few minutes and lay in the sun up at Kings Park. Perth is set in a beautiful part of the world. Even though it is winter, it was a sensational sunny day today, and there is no better place in Perth to spend such a day than at Kings Park.
The topic of conversation was how to spend time. A simple enough question usually, but if you actually approach this question as if your life depended on it, it can become quite difficult to answer. Well, I have found it difficult.
So I ran a few ideas past Libs, things that I have been thinking about over the last few years that have become clearer in this past year. None of them are a surprise to her, because I talk about them all the time, but some decisions need to be made soon. It is probably an exercise worth doing every now and then, at different life stages and according to varying circumstances.
A great day yesterday. I got called into the hospital in the morning as Dr Brad was going to be in clinic and could organize my requests for MRI and X-ray. So I went in, and while I was waiting for the clinic to start, I popped up to visit a guy who I met a few weeks ago just before he started the same treatment as I had with the stem-cell transplant. By what he was describing, he has had a way more uncomfortable experience than I did, especially digestively. Thankfully, he is on the way up now. It was quite strange being back on the ward without wearing pyjamas and ugg boots while carting an IV pump around. It was also great to catch up with a few of the staff who looked after me.
So I saw Dr Brad who kindly saw me without an appointment, got my requests and went and had a blood test. Then shot up to see a friend who is setting up house after arriving back from London. Then woofed down lunch before catching up with some of the students I used to teach up in the Hills. I am constantly blown away by them – an amazing group made up of amazing individuals. They are great testament to their parents’ approach to family and education. I have learned so much from them, and working with them has been a true professional and personal highlight. Now I am not their teacher, so it is just a privilege to hang out with them as friends. I want them teaching and influencing my kids, no doubt.
Shot home after that and picked up Libs before heading home for a 20 minute nap. Another friend, Sal, came over to go shopping with Libs, and I needed to look for a jacket so I went back into town for late-night shopping with them. To finish off the day, we ended up at a restaurant for the best steak meal I have ever had, I do believe.
Arriving home, I just crashed physically. Quite a busy day for little ol’ me, and quite a lot of walking. I was on the walking stick all day, and I have had a blowout on the rubber foot of the stick, so it is down to the metal. Not so great for walking on tiles, as it scoots everywhere, but fortunately I have another 2 spare sticks. Thank you E-bay bulk buying.
I don’t usually like just writing about the details of every day like this, but it was just a really enjoyable day. I am less worried about my leg issues and I am loving being around people I love each day. The weather here in Perth at the moment is just fantastic. It is winter but we have had a stretch of 20C and sunny days. It has been just one of those days.
How’s this for real time updates. This photo is taken now as I sit in bed, faithful laptop on the top of my lap, wife by my side, doing her best to ignore the tapping of keys, wearing her light-blocking eye-mask.
Amongst the uncertainty I feel at the moment, I have it so good. For whatever reason, I have landed the best friends anyone could ask for. I believe the saying to be true, “Show me your friends, and I will show you your future.” This has been true in my life in the most positive way possible.
When I was reading some literature on Multiple Myeloma in the early days of diagnosis, there was a section headed “Positives”. In the light of this disease being incurable, it said, “Most patients with Multiple Myeloma report that they feel closer to family and friends after diagnosis.” You know what else it reported on the positives? Nothing.
However, I have found this to be true. And if that is the only positive able to be identified, then that is good enough for me. With the friends and family I have, it is me who is getting the good deal.
Well, the ball is rolling now. I got in contact with Dr Brad this morning and he is requesting an MRI and X-rays, and I wouldn’t mind getting my bloods done again.
It has been a while since we have had to deal with the ‘uncertain’ nature of diagnosis. For the last six months or so I have had treatment for what we knew was there. Now that I am supposed to be in remission, I have been reminded that living in limbo is still going to be a constant. It is once again going to be a real decision to live life without this hanging over my head as much as possible.
It has made me wonder about what sort of decisions I would need to make in the event of another unexpected hurdle coming up. It is all very well to say that we’ll cross that bridge when we come to it, but there are consequences for not thinking ahead too. At the moment, I am wondering what consequences will there be if I am lethargic or physically lose more mobility in the coming months? What will I do with work? What plans will I have to change in the future to accommodate the unforeseen?
Our response so far has been to scale back the timeframe by which we plan things. It has become more day-to-day living and being hopeful that we can do many of the things we aspire to do in the coming months. I was kind of hoping that I had said goodbye to my sore days for a while.
On a more positive note, having a sickness like this has allowed me to get in touch with some wonderful people, mainly suffering cancer themselves. I have been keeping in touch with a lovely lady in Florida called Jan who has been going through the same treatment as me at pretty much the same time. Jan is keeping a blog also which you can check out by clicking here.
There are a few things on my mind at the moment. It has been a fairly restful weekend, which usually is conducive to some thinking activity occurring.
My leg is still on my mind (not physiologically thankfully, but if it were it would be a lot easier to pinpoint the problem). I feel the pain is getting more noticeable and it is causing me to change my walking and standing in order to protect it and rest it. I have to say, it is worrying me a bit. I don’t want it to be what I think it is.
Our plan is to wait until Tuesday to give it more of a chance to recover if it is related to me walking too much last week. If it is still an issue then we will ask Dr Brad what the next step should be.
I started Thalidomide a few nights ago and I haven’t noticed much of a change really. I am on half-dose at the moment so as to allow my body to get used to it gradually over this week. I am to expect a bit of dizziness, lethargy and possibly nerve damage as side effects. Excellent.
The lowdown is that this disease, once again, is very difficult to read. To make things a little more complicated, most of the computers were down at the hospital, so we didn’t get much time to see the results of the PET scan or the report.
To begin with, we got everything signed off for the Thalidomide regime. This involves reading through some statements and signing off on each one to confirm we understand the side effects and risks. The great news is that Dr Brad just returned from a conference in Switzerland where it was recommended that Thalidomide courses are best kept to 6-9 months. This is great news as I was preparing to be on it for the entire year. So I start that tonight.
We then checked out the report from the PET scan briefly on one of the computers that worked. The scan showed that there were areas of greater uptake in my skull and left femur. We know that there have been lesions in these places before, so we are hoping that the uptake is due to healing still taking place in those areas. I cannot feel the lesion in my skull as I did before, but I can feel something different in my femur. The difficulty is that I am not sure if it is my mind consciously registering that there is something there, therefore I can ‘feel’ something, or whether there is actually legitimate sensation.
At this stage, we are very cautiously using the word ‘remission’. Until something definite shows up, that is the best we can hope for – which is not bad at all. The indicators we are looking for include high-spiking proteins in blood/urine tests, cracking bones, bumps appearing, bone pain and anything else abnormal. So we are again in limbo. I have my next appointment in a month. I am neither up nor down.
This morning I am heading off to get my report card. This is my first post-treatment and post-scan meeting with Dr Brad to find out how effective the treatment has been.
We are hoping that there is enough evidence to be able to say that I am in remission. Although remission length can be the same length as a piece of string, it would be great to start off on with a clear-ish bill of health.
All things considered, I am feeling well and looking well. So I am seeing this as a good sign. I am still finding it hard to comprehend the last two months. I walked to work today, did pretty much a full day’s work (mostly standing up) and then walked home. I was expecting it to be more difficult than this. I’m not complaining at all. There will be time for that later.