Recently I enjoyed a Blues Guitar Weekend Workshop with Dan Patlansky . This happened to be the weekend of my birthday. The workshop was held in the beautiful town of Clarens in the Free State. We spent the whole weekend talking about guitars, music and the blues. I must say I really learnt a lot, even though I have been playing guitar for some time. There is always some thing to learn. I met some great guys there, with common interest. Also amazing to see so many "Fender Strat's" in one place. Dan's has a 60's Strat, and also Glen! They must be worth a packet.
Clarens was amazing, we had lunch in the village, it really has an nice atmosphere!
View of Clarens
Dan Patlansky and I
Charl, Dan, Jo and Glen
On the last night we had a show, we all had to had to break into groups, we called our band "Whatever".. Was nice jamming with Dans Band ... (I think I need to get one of those...)
After all these years...."still got the blues".....
Had a great day today, did about 4 hours of cycling in the beautiful mountains of Sabie, went out this morning for about 2 hours, and 2 hours in the afternoon. We are camping next clean mountain river, nice and tranquil. We cycled up to the top of Lone Creek Waterfall, the views where amazing. Also had a chance to eat at Harries pancakes, always very nice.
Finished my last day of treatment today ;-) Were off to Sabie this weekend - camping and cycling. I hope I'm up to it, look forward to some scenic forest routes, water falls, etc...
That's not on my mountain bike...Started my next treatment cycle, the aim 0% MRD!
Still feeling very good, spinning and gyming in the mornings. Quarterzone keeps me hyped up, but take tabs at night to get to sleep! This is part of my 3 monthly treatment cycle.
Recently have read intimacy with God, by John Bevere, a good read can really recommend it!
In this workbook edition of his "Drawing Near," Bevere emphasizes the need for obedience and urges believers to practice communication with the Holy Spirit with the understanding that prayer is a dialogue, not a monologue. ... Google Books
Went for a cycle today with my close friend, Tom, and realized that it is two years since I was diagnosed, and here I am cycling and enjoying the warm spring weather. The thinking back to the 24th September 2011, driving home to pack my bags to go to hospital. I remember that day vividly , it felt like doomsday, could not believe what was happening to me. Looking back at all the things we had to go through, operations, therapy, radiation, stem cell transplant, and refurbishing our house. And so when you look back at the foot prints in the sand, you realize that He was carrying me all the way!
I remember going to church for the first time after I had recovered from everything, and the realization that I had, that all I needed was His grace, and that His grace is more than enough!
2 Corinthians 12:9
But He said to me, My grace (My favor and loving- kindness and mercy) is enough for you [sufficient against any danger and enables you to bear the trouble manfully]; for My strength and power are made perfect (fulfilled and completed) and show themselves most effective in [your] weakness. Therefore, I will all the more gladly glory in my weaknesses and infirmities, that the strength and power of Christ (the Messiah) may rest (yes, may pitch a tent over and dwell) upon me!
I also thank all friends and family, and especially my wife, for all the prayer and support they offered me!
I saw Dr T, yesterday, to review my progress and results. Also to receive my monthly Zometa fix.
Good news, my levels are down! 6 months ago they detected 0,1% MRD, it has now reduced to 0,06%. Our goal is still 0% MRD, so I will still will be receiving Valcade treatment beginning November. Scheduled for another bone marrow biopsy in 6 months time.
The doc is very happy with my progress, and so am I! In the mean time its time to get back on my bike, and enjoying cycling in the great somer weather!
Check out this Chris Tomlin video that my Dad sent me, Blessings!
Well time has flown, I'm at the doctors rooms for my next bone marrow biopsy, I think it's been 6 months from my last test. This is not the greatest, pretty sore! Takes about a week for the results, so I'll see the doc in a weeks time. I really trust for a good report! 0% MRD!
I read an amazing scripture this morning:
Psalms 25:14 (AMP)
The secret [of the sweet, satisfying companionship] of the Lord have they who fear (revere and worship) Him, and He will show them His covenant and reveal to them its [deep, inner] meaning.
Professor Michael Pepper, Director, Institute for Cellular and Molecular Medicine, University of Pretoria, gave a lecture at the Attebury Theatre last night on stems cells. David and I, where invited to be interviewed at part of the this presentation on our recent stem cell transplant experiences. The evening was very informative, I think I understand the application of stems cells better. It is also exciting to understand the possible future application of this technology. I'm glad I was able to share my story to an audience and hope that it was an encouragement to individuals who may be faced with similar challenges.
Enjoying the Highveld winter, except all the power failures recently. I'm currently in the Cape, such a nice place to be in the winter, everything is green, cold, wet and mostly fresh! No pollution, like we have in Pretoria.
So I have treatment days 1,4 and 8 behind me now, these are Valcade treatments. Not feeling too bad, except not being able to sleep, because of the dex, a bit of neuropathy, but mainly from the Zometa treatment (day1). I have my last treatment next Monday.
Next steps ......bone marrow autopsy in 6 weeks, and 2 weeks to see Dr T, with the latest results. I'm really trusting The Lord for a good response, with 0% MRD!
With the winter months, I have kinda stayed away from gym, not too healthy place in winter, especially if your immune system is on the low side. So as a result I'm a little chubby. Once the season turns and it's warmer, I look forward to some some serious cycling.
I enjoyed a great Fathers day over the week end, the girls got me some nice goodies. I'm really blessed with amazing women in my life.
Saw Dr T today, my bloods are all good, every thing else is fine. I'm scheduled for another round of chemo starting the middle of next month, with bone marrow tests scheduled for September, this is part of my maintenance regime. After the bone marrow, the doc will determine the way forward.
I really need to get back on my bike, I came down with another cold after Sani2c, I suspect from going to gym. So I have been off for a couple of weeks, all better now. Being the in the middle of winter, its hard to even think of getting up to cycle. I guess I'm in hibernation mode, which is okay.
School holidays are just around the corner, I look forward to some time in the bush....
Received this "free" pic from the Sani2c organisers, this was right at the end of the race. The race a distant memory. Time to get back on my bike...thinking about the next one...
We made it! Day 3 started as a wet day! It rained the in the evening and well into the morning. Getting ready was a bit of a mess, with mud, wet clothes and shoes. The start was over cast and misty and the course was muddy! Day 3 was all about getting to the sea, so we spent quite a lot of time going down hill, but as you know, there is always a uphill waiting for you. The route was 86 km, our time was over 5 hours, when we arrived at the Lagoon, they had build a long riding plant form over the water, very scary to ride over, as the bridge moves in the tide. We had a great finish on the Scottburgh beach. It started raining, we had to pickup all our kit in the rain, not so nice...
All in look, looking back, I can't believe that this one has been 'done and dusted'. On a personally note, I spent a lot of time enjoying Gods amazing creation! So beautiful! Also appreciating that He created to be able to do so many things, cycling one of them. Also how he created our bodies, every cell, every hair, and how every part functions with the other. We take Him for granted, and really need to live lives holy unto Him! On the route I would ask Him to protect me, not to fall. There where one or two moments where it was close, but he kept me for me falling.
As I think back over the last two years, I guess there was a stage when, I thought, 'this is it', that I would no be able to do things like this. I am amazed the The Lord has given me grace to carry on. To Him be the Glory!
Today was the toughest day, 99km, something like 1700m climb, and over 2000m decent. We descended the Umkumaas Valley early this morning, the most amazing view! Once we go down to the river, we cycled along the river down stream, crossing it with a bridge that was constructed. We crossed many tributaries, experiencing the cold water, and lots of mud! After we descended the valley we had to climb up again. An Amazing day! Physically pushing to the limit. Total riding time over 7 and a quarter hours. A long time to be on my bike, with my heart rate in the upper limit. Fortunately no incidences, Praise The Lord! Nature is so amazing, and to experience it, one realizes the only God could do this, and he created us to be able to do this?
Tomorrow is the Fast decent down to Scottburgh, we believe there is a floating bridge that goes into the sea that we will have to cycle on, in the wave, scary, I'm leaving my phone in the bag tomorrow.
We had a great dinner, and plan to have an early evening. Tomorrow is going to be a long hard day! The average time is expected to be around 7 hours. 99km and 1700m climb. If we can make it tomorrow then, we would have broken the back of the competition. We went for a massage this afternoon, hope it helps for tomorrow. Till later......
Or perhaps not so easy. We finished day one of the Sani2c. Finishing time around 5 hours, my worst time, but under the circumstances a victory! The scenery was. Amazing! The it wads such nice warm day. The temp when we started was around 9 -11 degrees, max temps when up to 28 degrees. Very warm this afternoon. This part of Natal, is really beatifil!
Today we drove down to Underberg, to the start of the Sani2C. On the way down we saw snow on the Drakensberg mountains close to Harrismith. We registered and received some cool jackets and cycling kit. We have been seeded in group B, and start at 8:10 tomorrow morning, hope not too cold, morning temps ate around 2-3 degrees. Hope to have a good ride!
Well the day has nearly come, we leave for the Sani2c tomorrow morning, and start cycling on Wednesday and finish on Friday. Seems like there might be rain expected. Cold and rain...not very nice.
Last sunday evening we went to the Justin Bieber concert with the girls, really was good, the girls loved it ....
I must say it has been touch and go. We have been training since the beginning of the year, for me it was like starting all over again, my mind seemed to remember what it was like flying up hills, except my body was some where else. The early mornings became darker and darker, unit we really could not see where we where cycling. Adriaan, my cycling buddy, spent quite a lot of time patiently waiting for me during our training sessions. A bump in the road was when I had to start a cycle of treatment, as started getting flu at the same time. I think this was my worst two weeks. I guess all I was worried about, was not being able to train.
But fortunately I'm over that, and I guess I'm ready to go. I think I'm taking the scenic route this time around, want to spend time enjoying the environment and beauty of nature. We cycle through the most amazing forest hills, rivers and valleys. Will keep you posted .....
Starting my Mainteance therapy today, 3 more sessions, then I'm off for 3 months. I'm starting to understand minimum residual disease better. So I believe that I'm in a good place, as the doctors can be proactive not reactive. MRD is not a relapse, but traces of the disease, still found in my blood. My treatment regime will be one cycle for every 3 months, and I guess will stop, when my MRD is 0. There are some interesting initiatives by the International Myeloma Foundation, which I'll post, for those interested.
My cycling training is going well, except I picked up a bit of a cold, hope it goes over quickly. All on track for the Sani2c.
Jude 1:24-25
Doxology
24 Now to him who is able to keep you from stumbling and to present you blameless before the presence of his glory with great joy, to the only God, our Savior, through Jesus Christ our Lord, be glory, majesty, dominion, and authority, before all time and now and forever. Amen.
The Sani2c mountain bike race is exactly a months time. Adriaan (my cycling buddy) and I have been up early in the now cold mornings, getting km's below our belts for the up and coming cycling event. I really look forward to it. It will be a great achievement for me, and something worth aiming for. It will also kinda be like a full circle, being able to get to a point where I was, prior to my diagnosis.
I was reading the headlines of some of the mm blogs, and one guy's blog reads, "have you climbed any mountains recently?" I guess for me, there is more than one.
So what about MRD, something new that I have learned. Earlier this year I had a normal bone marrow test, which still showed that I was clean. My doctor's rooms have subsequently acquired the newest testing equipment, which I understand now meets the international testing standards for MM. The flow cytometry test is for a million cells. My results recently came back, and shows 0,01% myeloma cells. The doctors are testing for minimum residual disease (mrd). Based on these results I will have to go onto maintenance therapy. The standard international treatment would be revlimid, or lenalidomide. These are not yet available in SA, and so I will be going back onto valcade, with one cycle every 3 months. I understand that this will be until my MRD is 0%.
I have been on valcade before, and has worked very well for me, so I don't anticipate huge problems. I have been following the IMF website, and there are so many advances in research and a push for a cure.... At the end of the day, my hope is in the Lord above, the maker of heaven and earth! Shalom!
I'm glad to say I'm doing very well! I haven't updated my blog for some time, I guess that's also good thing, as I have been getting back into the throws of life.
I recently went to see Dr Zondag, my orthopaedic doctor, for a checkup on my back, I wanted to make sure that the work done to my back is all okay. I went of X-rays, and the doc confirmed that the fusion has taken very well, there was not sign of deterioration, which was great news. My burning question was whether I can continue to cycle? .....I got the all clear. :-)
So...I've been back on my mountain bike, training for the Sani2C, a 3 day mountain bike event happening mid May. I must say its been a long hard road, since my stem cell transplant, kinda like a system reboot, with no immune system, 3 weeks in isolation, getting home and nearly fainting going up the stairs, to getting back on my bike, and starting training. Initially it felt like my fitness was non existent, to slowly try and build this up. So I have about 2months of training left, slowly gets there!
I remember, being is hospital, Yvette brought be a change of clothes while I was there, all my Sani2C T shirts, etc. The one thing I held onto was that I would get through this and do it again. I missed last year, and am privileged to be able to do it again this year. I really want to take it easy and enjoy the ride and the time in nature!
I recently went for a bone marrow test, which still showed all clear. Praise the Lord. I am still on my monthly Zometa fix, for bone strengthening. Dr T's practice has acquired a new bone marrow testing machine (the first in South Africa), which is apparently much more accurate than a standard bone marrow test. The machine will be up and running soon, and I'll have to go for another bone marrow. They want to check for minimal residual disease, and should there be any, I may have to go onto maintenance therapy. Once again, my trust is in the Lord, the maker of heaven and earth.
I'm back at work, and its going very well, still travel to the cape town once a month, and the interior design business is doing well!
I have also started attending a support group, there are approximately 15 of us, all with the same condition. Each person has a different experience, but there is the realty of our common experience. The group is called the 4P's (pricked, prodded, something and something).
In this all, the Lord is my Rock and Salvation, I would not be able to get through this without Him.
Psalm37:
3 Trust (lean on, rely on, and be confident) in the Lord and do good; so shall you dwell in the land and feed surely on His faithfulness, and truly you shall be fed.
4 Delight yourself also in the Lord, and He will give you the desires and secret petitions of your heart.
5 Commit your way to the Lord [roll and repose each care of your load on Him]; trust (lean on, rely on, and be confident) also in Him and He will bring it to pass.
6 And He will make your uprightness and right standing with God go forth as the light, and your justice and right as [the shining sun of] the noonday
The Lord wants to be our Healer, last night I was watching this music video by Hillsong, blew me away! If you are going though a tough time, and need the Lord, call on Him!
Its been some time since I have updated my blog, please see David's testimony! Praise the Lord!
(David, I hope you don't mind, but I think so many people will be encouraged by your testimony)
