Adrian Sudbury was a reporter for both the Huddersfield Express and Chronicle Series and the Huddersfield Examiner. In November 2006 the 25-year-old was promoted to digital journalist, effectively editing the new-look Examiner website.
Just two days into his new role he became seriously ill and called in sick. A week later he drove himself to A&E and was eventually diagnosed with leukaemia.
It was then identified that he actually had two distinct types of the disease running at the same time. According to the medical literature he was the only person in the world to have this condition. As such, it was not possible to offer Adrian a prognosis.
Here he shared his experiences of the disease and his treatment up until his passing.
One of the hardest aspects - after having hopefully overcome two-types of leukaemia - is explaining to people that this post-transplant complication is potentially just as life-threatening.
My new bone marrow has engrafted successfully. It is making new red blood cells, platelets and white blood cells - the cells that help fight off infection. Unfortunately, these new white blood cells are starting to attack my skin. If left alone they could attack other organs of the body including the liver and lungs.
Chronic Graft versus Host Disease (cGvHD) leads to the death of a significant number of transplant patients every year. If it can't be cured then the sufferer can be left with seriously debilitating long-term consequences.
The good news is there are a number of treatments now available. Many of them are cutting edge and more research is required to understand exactly how they work. The treatment I have just started also frankly sounds mental! It involves a kind of dialysis machine, chemicals, UV light and Rotherham.
I hope this post will explain in a bit more detail the nature of cGvHD and the treatment that offers me a 50% chance of long-term cure. On a personal note, I have to say I am worried about the future. I've just got this really bad feeling that I'm not going to fully get over this.
The full title of this entry should really be treating chronic Graft versus Host Disease (cGvHD) with Extracorporeal Photopheresis (ECP) - a headline to make even the hardiest of sub-editor clutch their stomach and wince in abject pain.
I think the best way to tackle all this is to look at all the different aspects individually.
What causes cGvHD and why does it happen?
Your immune system is designed to recognise anything that is foreign and fight it off. When I had my bone marrow transplant new cells were put into my blood. To ensure my body accepted these new cells I was prescribed a high dose of immunosuppressant drugs to stop my body attacking these new cells.
The idea was as time progresses your body learns to accept these new cells and you can taper down the dose of drugs. Frustratingly we were about two weeks away from being off the medication all together when the cGvHD flared-up.
Between 30 to 40% of transplant patients develop cGvHD and it remains one of the major challenges in the field.
It is described as being limited or extensive. If it is extensive then it can involve many organs in the body including the liver, bowels, gut and lungs. This is much harder to treat. My cGvHD, so far, appears to be limited to the skin. Limited cGvHD seems to respond better to the ECP treatment.
Another strange aspect to grapple with is that that the reaction between the newly engrafted cells and me, the host, is probably what is keeping my leukaemia at bay - or has helped see it off for good. I have a further bone marrow sample in November and because of all this remain optimistic that there should be no trace.
Why are my new cells and body reacting?
Every cell in the body wears a kind of uniform to let the immune system know what it is and what it should be doing. Think of it like a kind of hat on its surface. These are called antigens.
Even though on paper my donor was a 100% match, that is only ever as good as the technology currently available. If you were able to take a deeper look you would see that there are very slight mismatches between the make-up of my antigens and the donor's. This means there is always a risk of long-term problems.
My German donor was what is called a matched-unrelated donor but even siblings are always going to be slightly mismatched. The only perfect matches can be found in identical twins.
Conditioning
Another fascinating part of this is that the conditioning process I had to go through seems to contribute too. If you recall, in order to clear away my defective bone marrow I had to have intense chemotherapy and total body irradiation.
Research suggests that these processes can lead to two undesirable side-effects.
1. It increases the number of antigens on my body's cells which will lead to a greater immune response from the newly made white blood cells.
2. The processes increase inflammatory factors in my body which encourage the new white cells to attack me.
First line of treatment - steroids.
So what can be done to stop these new white blood cells giving me gip? The answer is a high-dose of steroid drugs and bumping-up the dose of immunosuppressive drugs again.
The steroids work by inhibiting the action of the new white blood cells. This stops them interacting with and damaging my body. I responded well to this treatment and incredibly my skin was entirely restored within 48 hours.
What would happen if I stopped taking the steroids now?
Click on Fat Face to see Adrian morph like a power ranger into Flaky Face (or what might happen when Adrian comes off the steds)
So why not stay on steroids for the rest of your life?
Apart from the bloating there are serious long-term problems with steroid treatment. The most dangerous aspect is that they again are stopping your immune system from working properly. This means you are at a high-risk of infection. Anyone with chicken pox, or a similarly unpleasant virus, I have to avoid literally like the plague. In fact, although cGvHD can attack other organs causing death, it is actually infection that is most likely to lead to mortality in cGvHD patients.
Other long-term problems associated with steroids include:
-Osteoperosis
-Diabetes
-Mood swings
-Adrenal problems
-They can send you nuts!
How can the underlying problem be treated so that steroids can be stopped?
This is where Extracorporeal Photophoresis (ECP) comes in. In a nut shell the idea behind this treatment is that it 'turns down' the intensity of your new immune system and trains it not to attack your own body. Once this starts happening you can slowly begin to taper steroid and immunosuppressive therapy.
By the way, coming off steroids 'cold-turkey' is not advisable.
I have to say I have been amazed at what ECP entails. Extracorporeal means outside the body and photo means light. ECP therefore means light-activated treatment taking place outside the body.
The first thing to say is, despite being pretty unlucky for the last year, I have been fortunate in that Rotherham is only one of three centres that offers this treatment in the UK. Some patients have to travel down from Scotland and stop over to have their therapy.
What is ECP?
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I will now be going over to Rotherham General Hospital for two three-hourly sessions, for two consecutive days, every other week. This will initially last for three months until we know whether or not I am responding.
-A reasonably large needle is inserted into my arm (after being numbed) and I am connected to the photophoresis machine.
-About 400mls of blood is taken out of my body.
-The machine spins this blood in a special bowl. Red blood cells are heavier than white blood cells so the two can be separated.
-The white blood cells are then shipped into a special chamber where they are mixed with a chemical called Uvadex.
-Precisely how Uvadex works is not known but when it is exposed to UV light it binds to DNA in the white blood cells.
-The white blood cell layer, called a Buffy Coat, then passes over what looks like a little sun bed.
-The UV light then initiates the reaction between Uvadex and the DNA leading to a loss of cell viability and eventually cell death over several days.
-My red blood cells and damaged white blood cells are then returned to my body.
This all sounds a bit insane but I have to say the quality of care I have received so far has been, just like at the Hallamshire in Sheffield, absolutely excellent. The procedure is totally painless and the sisters in the department make you feel utterly at ease.
I know what you're thinking now - how the bloody hell does all this treat cGvHD?
Well the honest answer is that scientists are not 100% sure. The technique was originally shown to be effective in the treatment of a type of lymphoma and subsequently other skin disorders involving a misbehaving immune system.
It was tried for patients suffering from cGvHD and seemed to work in a significant number of cases. As I said before, it is thought it could offer me a 50% chance of full recovery. However, the precise nature of this treatment remains unclear.
Research continues and the Rotherham hospital's website offers some excellent information and background into the field. Teams involved with the hospital are making significant advances into understanding the whole process.
http://www.rotherhamhospital.trent.nhs.uk/DepartmentsServices/Photopheresis/PhotopheresisGvHD.asp
Their site includes a proposed model for how this treatment treats cGvHD which I thought would be good to include here.
1. Chemotherapy and Radiotherapy (from conditioning) has caused my tissue to make more antigens on their surface.
2. They also lead to more inflammatory factors being present in my body, exacerbating the problem.
3. The new white blood cells being made by my new marrow don't recognise these antigens and decide to attack.
4. They then create their own inflammatory products which perpetuates the problem.
5. There is evidence that when the white blood cells are returned they increase anti-inflammatory factors and decrease pro-inflammatory factors.
6. It also seems that they can help activate special regulatory cells that help 'train' the immune system to be more tolerant.
As I said earlier it's unfortunate this is happening to me but I'm trying to keep positive. The steroids, generally, are giving me plenty of energy so I'm trying to make the most of life while I'm feeling good. This includes trying to do a bit more work from home for the Examiner, light to medium exercise and generally enjoying myself.
I have had two sessions at Rotherham and the next pair is on November 6 and 7. I know that until at least the following sessions there will be no point in attempting to reduce the steroid dose. So, barring infection or other unforeseen complications, I should be OK for a while.
However, I am apprehensive that when the drugs are reduced problems will emerge. Like I've said so many times before all I want is to get over this and return to normal life. Although there are other regimes doctors can try, I can't help but feel apprehensive that cGvHD will be something I have to learn to live with and manage, rather than be rid of all together. It could mean a lifetime - however long that is - of stiff joints, painful skin and general discomfort.
I hope I'm wrong.
Adrian,
I know you are feeling low at the moment but don`t think that you are not going to fully get over this. It will take time and lots of drugs but you will get there in the end! :0)
Dawn xxx
Hi Adrian
Really interesting stuff!!
The cGvHD is going to be difficult for you but at the same time, it is keeping your leukaemia at bay, as you have said.So that must be a positive thing and I`m sure you will cope with the cGvHD and its treatment.My son had a BM transplant and did not develop any type of GvHD whatsoever - unfortunately he developed a rapid leukaemic relapse 5 months post tranplant.A second transplant was attempted which led to a quicker relapse after 3 months - I was almost willing any GvHD to appear.
So keep positive and concentrate on keeping the leukaemia away which is the main aim of the game, isn`t it?
Whilst you`re at Rotherham, you can check out the football team!!
Take care as always
Liz
Hello.
Hi Dawn, thanks for getting in touch. You are right, will try and keep more upbeat. More drugs!
Thanks for the interest too Liz. It must be strange reading about this other negative response to a bone marrow transplant. I've been amazed to learn how complicated the process can be.
I think your attitude to the cGvHD is absolutely right. I'm still here, and although there are difficulties, this year has made me appreciate that I've actually been pretty lucky.
All the best,
Adrian
Hi Adrian
You may remember Phil, who had AML and showed the chronic Philedelphia gene,as you did, he had his transplant in January. Well he's suffered since June a small amount of GVH of the gut and liver but his main problem has been dealing with the CMV virus which has risen it's ugly head constantly, requiring very toxic drugs to kill off the virus, his donor was negative CMV and Phil was positive and I mistakenly thought this was a good thing but it's not as the new marrow has been unable to deal with the virus because of the immune suppressant drugs which keep the GVH controlled. The specialists decided to reduce Phils anti-rejection drugs (now at zero) and the marrow started to deal with the CMV virus by itself and the GVH is still under control with only minimal steroids, one every other day! We have now had two zero CMV counts. All good news after a long and scary six months so hang on in there, it will be good in the end.
Trish
Hi Adrian,
Yes, my chemo nurses did think you were cute, despite the steroid face!!!
Will I be OK? Dunno. Had chemo this year. Feel 100% at the mo. They say I'll need more chemo this year/next year/sometime.
My first thought when diagnosed (a week before last Christmas - great timing) was 'I don't have time to have cancer.' Still don't.
Blimey, yours is complicated! Best of luck. Stem ginger biscuits are great for the nausea.
Saw the Hudds Examiner the other day - my boyf lives in Holmfirth. I'm on Northern Echo in t'dales.
Keep smiling (if only to cheer up the nurses at James Cook Hospital).
Jill x
Hi Trish,
Sorry to hear Phil has had such a rotten time. What was living with CMV like? It's so strange that there can be so many problems post transplant.
What is graft versus host disease like when it's in the gut and liver?
Is everything OK now? Really hope it is.
All the best to you both,
Adrian
Thanks Jill,
Disco Dancer, as my mate calls it, is pretty rubbish isn't it? Can't believe the Hudds connection! I love Holmfirth, really nice place. Do you get to go out there much?
Are you back working on the Echo? What's that like? I'm trying to do a bit more from home at the moment but it's hard sorting everything out.
Hope you and you boyfriend are getting through this difficult time together as best you can.
God love your nurses!
Adrian X
YAHOOO!!! YIPPEEE!!!
Number 1124 in the Zero Club
Hi Adrian,
A CML friend (Annie) pointed me to your site. Yours is a remakable journey and story.
I started the Zero Club the very first day that I took Gleevec on the clinical trial for the drug in Portland Oregon with Dr. Druker and Dr. Mauro.
This was a club of hope. I assigned a number to every patient that I found on the internet who reached CCR (Zero out of 20 cells examined via a cytogenic test). CCR is the first stage of remission. After 6 months on Gleevec, I became number 102 in my own Zero Club. Number 1 in the club is Marty Gartenberg, a BMT survivor from Florida who gave me support and HOPE in the early days of my CML journey.
Hitting remission by taking 1 pill a day with minimum side effects is a cakewalk compared to any form of BMT. Your story is an inspiration to all those patients who have to follow your path by having a BMT.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.9 log reduction Feb/07
3.2 log reduction Jun/07
3.6 log reduction Sep/07
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Yahoo ID: zaviem
Remember you're not allowed to stay on the steroids forever! Being a superman isn't all it's cracked up to be, I hear!
I've sent the word out and the BP votes should be flooding in - there'll be trouble from me if they aren't! So we'll keep fingers crossed for the competition, and hey, while we're at it, for the cGVHD too. Can't wait to see you both soon - get those Christmas carols at the ready! Lots of love, H+T.
It sounds worse than RDMC versus Jason Nevins.
Toby and Sian
XXXX
Adrian, you are an absolute inspiration to us all. Chin up, my dear friend.
Jackie
dx Nov '04
800mg since Dec '04
(200% on diagnosis, now at 0.01% on bmb).
Is that why you haven't had a shave - flaky face?! You'll look like a right hard nut with your bulging biceps after the steroids and your unshaven face!
I'm in the middle of getting everyone i know to vote on your blog.
Chin up dude, it could be worse - you could be watching Spurs every weekend like me :-)
xxx
Adrian
My heart goes out to you with all that you have endured and what you are going through now......you are in my prayers.
Annie directed me to your blog........I was amazed at the information you provided. Thank you.
I was dx'ed with CML back in Jan. of 2004......began taking 400 mgs. of Gleevec soon after and wasn't long before I was CCR.......hoping for PCRU once again....only had that once, then crept back up. I cannot imagine having two different leukemias at one time. Keep us all informed on your progress.....I'll pray for a full recovery.
Sheila
You can up your chances of survival by being pro-active.
I'm a very healthy, two-time survivor of cancer - bone and then breast cancer. Doctors gave me little hope after I'd been through all the traditional medical treatments. So I gave the macrobiotic diet a try. And ... I believe it has saved my life. Nine years later I am cancer-free and in vibrant health.
If you are interested in what you can do to help to increase your chances of survival please visit my Web site: megwolff.com, and blog: becoming-whole.com
Because I challenged the status quo I am still here ... this could help you too. I have a friend that healed her leukemia this way ... she did no chemo ... and it has now been 25 years for her.
I know that there are low points, especially during the "treatment", but be determined and don't give up because you can do it!
Sending love & best wishes,
Meg ox
hopefully the bloatiness hasn't stopped you sporting your mask
Well done Ade, put our vote in for you today, looks like you are streets ahead. Phil doing OK. CMV didn't cause any symptoms as they treat it when the count goes above 1000, with toxic drugs which kill it off. The drugs did the damage, sicknes was Phil's main problem but he's still here unlike many we have met on this desperate journey. No leukeamia, 100% transplant what more can we ask. The rest will settle in due course, Just like you!!
Trish
Hi Ad,
Rachel from Woking here - just wondering if you'd be up for a science teaching when you're feeling up to it. If you can manage to explain something like that to a mere mortal like myself then you'd be pretty good with the kids here I reckon! Great to hear you are getting good quality care. Roll on Vegas!
Say a big hi to Pops for me!
Rachelx
Hi Adrian,
I am very happy to have discovered your blog. What a great guy you are to share your experiences with us.
My son had an unrelated matched donor transplant just over three years ago when he was 20. His original blood cancer was diagnosed in 2000 when he was 16 and went into remission after chemotherapy. However,he needed a transplant after he relapsed 4 years later.
He has suffered from gvhd problems since his transplant and is still trying to get off the steroids.
I have found the www.acor.org website, especially the gvhd mailing list to be really helpful as it puts you in touch with others dealing with gvhd.
I have found your blog very helpful as it helps me realise what my son might be feeling but is unable to to express to me. I don't feel so alone after reading your blog and will post your details on the acor website because I think it will help others.
Very best wishes
Clare
Hi Adrian,
I guess that you already heard all about me from my good friend Zavie Miller. Yes, I have the proud distinction of being number 1 on his zero list.
But now I have to tell you something, and that is yes, I also have/had/have/had GVHD going on now for the last eighteen years, and would you believe that I love each and every second of it. No, I'm not crazy, but I am still alive after going on those eighteen years post the most awful bone marrow transplant you can ever imagine. In those days I had to live in a very small plastic bubble called a laminous air flow chamber that measured five feet by nine feet, and I had to exist in there for more then seven months. In all of this time I learned that having GVHD (of the gut, liver, heart, lungs, eyes and skin) meant very little to me because I was still alive to have that GVHD. As I became more advanced with it I would just think about something that I wrote at the time for lack of anything else to do. What can one do in a plastic bubble other then writing and reading?
I wrote something called "The Window" and it is a true story, and several years later I found it on the internet, plagirized. This really bothered me because of some of the things this person/s said, but no matter because I know what I wrote...
I am enclosing it so that you may know that as long as you are alive there is always hope.
I only ask that you don't let that GVHD rule your life, but rather that you rule it, and you will see that you will be much better off by doing just that.
I wish you much health and happiness because I do know what you went through and what your now going through, and you really deserve health and happiness from now on...
GOD has blessed you (and me) just by giving you (and me) a beautiful donor that has done just that... Saved our lives!
You mark my words, in a few years your going to be able to put all of this behind you as I have, and you will go on to lead a wonderful productive life.
GOD bless you as he already has and will keep on doing so...
Marty
The Window
This is a true story that took place more then eighteen years ago.
There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die.
One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window.
The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park.
He would tell about the green grass, and the people who were having a picnic, and the dogs that were running around, as well as the ice cream truck with the man selling ice cream pops to the little children, and the hot dog vender also selling hot dogs with mustard and sour kraut. He would tell the other man that he would be able to see all of this for himself once he was healed.
This went on for about two weeks, and one morning the nurse came into the room as she usually did, and presented these two men with their sponge baths. She first went over to the man who was by the window to find that he had passed away in his sleep. She then covered him up and left the room for a couple of minutes.
When she returned, there was a doctor with her. This was a fairly new young doctor who would pronounce the man dead, and at that particular time, 8:40 a.m. even though he had obviously passed away some time during the night.
The other man across the room with tears running down his cheeks became quite depressed at seeing his roommate wheeled out of the room, declared dead. He thought about how this man would always try to make him happy with him describing all of the nice things he was able to see outside.
Later on that day the nurse returned and made up the bed in the room that was now unoccupied. The man in the other bed asked if by any chance he would be able to be put by the window. The nurse was a very kind and compassionate woman besides being a very competent nurse, and she wheeled him over.
Although this man was unable to prop himself up to see the outside because he had recently had his Spleen surgically removed, he tried but finding it was just impossible. The next day came, and he again tried and although he was in a great deal of pain he managed to very slowly prop himself up and peer out of that most appealing window.
He was absolutely shocked at what he was able to see, or to put it another way, what he was unable to see. There was nothing there but a brick wall! He wondered why that man would always tell him about what a beautiful world it was out there when in fact there was nothing but that brick wall.
At about that time the nurse came in with his sponge bath. He immediately without any reservation asked her why the man would always tell him about what was happening outside when in fact he wasn't able to see anything.
The nurse then told him that he was correct. The man who had been by that window was in fact not able to see anything because he was blind.
The man then realized that the other man was trying to make him feel good, and try to become well once again. And, as it turned out that other man did in fact return to health but not until he was able to receive a Bone Marrow Transplant. There was a donor found, his sister, and although he had to live in a plastic bubble for many months without having a window in it he would also be able to see all of those wonderful things that this world has to offer.
In effect the man who passed away prepared the other man so that he would be able to tolerate something that no one could ever imagine happening to anyone.
I know all about this story because I was that other man, and without this blind man's help I would have never been able to really “see� what the other man saw, even though he was totally blind.
I gladly wrote this story to be able to make others understand that there is hope even though you cannot see any hope. There is something to be learned by all of this, and that is to never give up hope.
Most of us are blind to this fact, and we can only see what we want to see. Sometimes it takes someone that can really see what is out there even though he is blind. Or was he?
Authors' note:
I wrote this story on May 21, 1990, which I consider my second birth date, because that was exactly one year after my Bone Marrow Transplant. My actual birth date was on May 21, 1944.
It is my wish that whoever reads this will take comfort in the fact that there is a beautiful world out there, and they must have hope in order to really be able to “see� it.
Martin Gartenberg
Hi Adrian,
I hope that your doing well today, and I just wanted you to read something that I once wrote, especially the very last line. This is part of a book that I am in the process of writing, and my book is always ongoing.
This part goes back about eighteen years ago, and was at the time that I lived in that plastic bubble.
Anyone that has or had cancer can always be able to really help themselves it they really believe in that very line and what it means...
***********************************************
How well I learned to do things that I could never even think that I would ever have to do. I had no other choice; I was fighting for my life! Since there was no running water, or any toilet facilities or even a sink in the L.A.F. unit, I had to learn how to be able to survive without any of them. People never even give any of this a thought because a sink or toilet is commonplace, and taken for granted.
The only water was one gallon of sterilized, warm water in a sterile pan that was sent in every morning so that I would be able to try and give myself a sponge bath. There was also a sterile wash cloth and a pair of... well, it must be known by now everything that went in there had to be operating room sterile, pajamas. For some reason there was always a button missing and that was usually in the crotch area.
I would run in place with my eyes closed, and my mind wide open. I was for that period in time in Central Park watching all of the things that blind man told me about. I would not even know that I was sweating through my hospital gown, or was about to completely collapse.
Just at that very time I opened my eyes to notice that all of the nurses that were on the ward were marching in place with me right outside that plastic bubble I was confined to.
As one person by the name of Adam who I helped go through this nightmare many years later said that those nurses were all marching to Marty's music. He, his mom (she asked me when I am going to start this biography) and his brother all became very close with me, and I still speak with her every once in a while. I will speak about all of them later on.
The nurses that were marching to “Marty's� music all started to applaud for me, and it brought back memories of me being in the room with Dr. F, and all of those new medical students that were also applauding for me. It's really funny how things like that seem to relate to other things that you think that you would forget, but I guess that I didn't, and won't ever forget. This is just another reason that I go back and forth in time to try and explain what I remember at the particular time, and it's relationship with whatever I think about.
There was a very special male nurse that was in charge of giving me my Chemotherapy. He was originally from the Philippines, as most of all the other nurses that were working in the cancer ward, especially in the transplant unit. These were very compassionate and caring professional people. I remember that I used to call him “The Sergeant� because he was very strict.
There was only one way to give me my Chemotherapy, and that was his way. There was only the way that he dictated any of the things that I needed to be given to me, and I had to also do everything his way. In the long run I have to give him a lot of credit for doing everything just the way they should have been done.
Everything had to be either his way or his way, and there was no deviating from that. He knew exactly what was necessary, and when it had to be done. At first I really disliked him, but as time went on I really loved him for the tender care he gave me. After a few days on Chemotherapy I thought that I would loose all of my hair.
I looked at myself in the plastic and it was still there. I at first thought that maybe it wouldn't fall out. Then I decided to take a nap, and when I awoke I thought that I saw some hair on my pillow. I looked closely and it surely was my hair on that pillow. I touched the top of my head and gently pulled at some of my hair, and there it was in my hand.
At first I felt badly about my hair, and knew that it was the Chemotherapy starting to work. I tried going back for another nap but was so upset that I couldn't. I again felt the top of my head and out came some more hair. I finally came to realize that I had no control about it, and decided to help it along.
I put both of my hands on my head and just started pulling everything that would come out without hurting myself. I would say that more then a third of it came out at that time. The rest came out the next day. In fact every strand of hair comes out of every part of my body in the following two days.
I was resigned to this fact and just let it do what it had to do. At first it was embarrassing, but that was the least of my problems. About two days later I developed the worst mouth sores that I could ever imagine I could have. It was called mucouscytes, and proved to be the worst part of the entire procedure; at least it was for me. As I found out later on I wasn't the only one.
The male nurse had told me to swish my mouth with something called Mycostatan, which to me tasted like rotten bananas. It was an anti fungal agent that would have probably helped those mouth sores from getting worse. Since it made me immediately throw up whenever I tried using it I decided not use it. This proved to be something that I would deeply regret, and paid dearly for it.
Although it may not have helped because most people that were given high dose Chemotherapy did develop it in some way or another, most would have it as bad as I did. There were times that I had wished that it were all over and I was dead. The pain was so severe that I had to be started on a Morphine drip. This made me hallucinate, and at times I would think that I would see snakes and roaches crawling around all over the floor and myself.
There was also a sterile mop handle that had to be in there with me. Every morning in came a specially dressed and gowned cleaning person that would put a Petri dish on the table behind me, and completely clean the L.A.F. using that mop handle and a sterile mop head that was wrapped in two striped covers. One was blue, the outer one, and the inner one was pink. If the inner one changed color then it wasn't sterile and had to be thrown out of the L.A.F. unit.
She would then mop the floor, and use special kinds of liquids that would be able to make the unit as sterile as possible. That Petri dish would be taken out every morning and examined for any cultured bacteria.
When the Morphine was given to me I also thought that the mop handle was very large snake. Even with all of the morphine I severely suffered, but one day that bone marrow coordinator I spoke of earlier on came in all suited up (Sterile gown, surgical gloves, mask, booties, sterile shower cap) She sat beside me and held my hand through those sterile gloves, and looked into my eyes and said these three words... “It's only temporary� I never forgot those consoling words to this day.
This was her way of letting me know that there was indeed that light at the end of what seemed at the time a never-ending tunnel. Even though the pain was so bad I would just put my mind in that other place my blind friend had always told me about. Yes, I suffered in terrible pain, but I made it not hurt anymore even though it did. It is kind of difficult to explain. I guess that you just have to go through something like that to know what I mean. I knew now what was meant by your mind controls your body...
Marty Gartenberg
hi, iam just starting this jurney, iam haveing my bmt in two weeks, thanks for all the info on your blog
I have gone through Adrian's blog, but couldn't read all the comments.Now just going through the comments.
It is upsetting that somany people are affected by this dreadful disease.
Hi Marty, I have seen one of your comments before reading these two.
What is your books( Autobiography?)name?I dont know if you will check Adrian's blog/comments again.Or I will find out.
Thanks Marty.
Shiney