Side effects that is. No major upsets though. These side effects were nothing major but in the interests of being thorough I thought it important to include them.
Hiccups - And not just any hiccups, these were so loud they could be heard on the south side of the Chicago river and made such a change in the air pressure everyone yawned to equalise their ears. Honestly, they were loud but they didn't annoy me any more than normal hiccups.
Dry lips - A combination of chemo, air conditioning and mild dehydration. We have all had it before. I need not elaborate.
Dry hands - Again probably due to the chemo and air con but also because I was almost obsessively washing my hands all the time. It didn't hurt or itch and cleared up with some moisturiser.
Well, I think that is it now. If I think of any more I will simply add them here rather than writing a new post. Until next time, stay well:)
Monday, April 30, 2012
Sunday, April 29, 2012
Side Effects
I really think this is an important post. What I thought I'd do is list all the side effects that I suffered during my stem cell transplant (SCT) but before I start there is something I need to say. This won't be a pretty post, some of these side effects were not fun. I don't want to dissuade people from thinking about having the procedure though. In hind sight, if I was where I was six months ago, even knowing what I know now I would do it again. To me beating the disease is far more important than a couple of months of discomfort.
However, I think that the most important thing is to be informed and I hope that my experiences will give people that are about to go through the procedure an idea of what to expect. Honestly, anyone that has a stem cell transplant cannot expect it to be a walk in the park, but one thing I kept telling myself through the procedure and this saying has relevance to many is, "I'm not doing this because it is easy, I'm doing it because it is worth it."
Right now I'm at the end of the SCT and it is all about recovery for me now but here are my list of side effects. Please bare in mind that this is not an exhaustive list of all side effect for anyone having an SCT or being treated by cytoxan. These are the side effects I experienced.
Hair loss - No surprises here. This is one of the most common side effects of chemotherapy. This one really didn't bother me. I felt like I was channeling Vin Diesel;) Another plus is that I haven't had to shave my face in four weeks and I still look like I had a run in with the cold steel this morning. On the down side, sorry ladies, the hair loss seems to work from the top down. The hairs on my legs have not gone anywhere.
Nausea and Vomiting - Another very common side effect. However, it is unrelenting with chemo. It took the whole range of anti-nausea medications to subdue this one, and it has taken more than two weeks for me to get even some of my appetite back.
Saliva build up - I got heaps of saliva building up in my mouth. If I didn't spit it out I would vomit.
Bad tastes - Post transplant I got a horrible, soapy, fragrant taste in my mouth like I'd been chewing on roses. This lasted for about three days.
Dizziness - Throughout the whole procedure I felt dizzy and I still do, but it is getting better every day.
Rash - I got a rash after transplant. The doctors biopsied it and tested it but I wasn't really worried as it didn't hurt or itch. It was later diagnosed as folliculitis.
Low blood pressure - And I mean really low. A combination of the drugs, procedure and mild dehydration led me to having a BP of 75/47. I even passed out. You can read that story here.
Fever - I think it was day +3 they took my temperature and I was running a fever of 100.4F. I was surprised as I did not feel like I had a fever but the thermometer does not lie. Some tylenol and antibiotics did the trick and I was fine.
Nasty poos - I did not have diarrhoea and I was not constipated but I had awful poos for the duration of the transplant. They were sticky which made them hard to evacuate and clean up afterwards. Chemo attacks the lining of the whole intestinal tract from mouth to anus so I think this had something to do with it. They also burned fiercely like I had just the night before battled the force 10 vindaloo at Mr Singh's Curry House of Pain.
PICC line pain. It didn't hurt while it was in. It didn't hurt for the first four days after extraction. But it hurts now. I think this is normal though.
Well, I think that's about it. I hope I haven't grossed you all out too much but I think it is important to give all the facts so people can make informed decisions. Until next time, stay well:)
However, I think that the most important thing is to be informed and I hope that my experiences will give people that are about to go through the procedure an idea of what to expect. Honestly, anyone that has a stem cell transplant cannot expect it to be a walk in the park, but one thing I kept telling myself through the procedure and this saying has relevance to many is, "I'm not doing this because it is easy, I'm doing it because it is worth it."
Right now I'm at the end of the SCT and it is all about recovery for me now but here are my list of side effects. Please bare in mind that this is not an exhaustive list of all side effect for anyone having an SCT or being treated by cytoxan. These are the side effects I experienced.
Hair loss - No surprises here. This is one of the most common side effects of chemotherapy. This one really didn't bother me. I felt like I was channeling Vin Diesel;) Another plus is that I haven't had to shave my face in four weeks and I still look like I had a run in with the cold steel this morning. On the down side, sorry ladies, the hair loss seems to work from the top down. The hairs on my legs have not gone anywhere.
Nausea and Vomiting - Another very common side effect. However, it is unrelenting with chemo. It took the whole range of anti-nausea medications to subdue this one, and it has taken more than two weeks for me to get even some of my appetite back.
Saliva build up - I got heaps of saliva building up in my mouth. If I didn't spit it out I would vomit.
Bad tastes - Post transplant I got a horrible, soapy, fragrant taste in my mouth like I'd been chewing on roses. This lasted for about three days.
Dizziness - Throughout the whole procedure I felt dizzy and I still do, but it is getting better every day.
Rash - I got a rash after transplant. The doctors biopsied it and tested it but I wasn't really worried as it didn't hurt or itch. It was later diagnosed as folliculitis.
Low blood pressure - And I mean really low. A combination of the drugs, procedure and mild dehydration led me to having a BP of 75/47. I even passed out. You can read that story here.
Fever - I think it was day +3 they took my temperature and I was running a fever of 100.4F. I was surprised as I did not feel like I had a fever but the thermometer does not lie. Some tylenol and antibiotics did the trick and I was fine.
Nasty poos - I did not have diarrhoea and I was not constipated but I had awful poos for the duration of the transplant. They were sticky which made them hard to evacuate and clean up afterwards. Chemo attacks the lining of the whole intestinal tract from mouth to anus so I think this had something to do with it. They also burned fiercely like I had just the night before battled the force 10 vindaloo at Mr Singh's Curry House of Pain.
PICC line pain. It didn't hurt while it was in. It didn't hurt for the first four days after extraction. But it hurts now. I think this is normal though.
Well, I think that's about it. I hope I haven't grossed you all out too much but I think it is important to give all the facts so people can make informed decisions. Until next time, stay well:)
Second Day Back
I still felt fairly ordinary. The lethargy was overwhelming. I rose late, and after my shower I had to lie down on the bed for half an hour before I finally made it to the couch for yet another rest. It was a tough day. I was still flirting with a low grade fever and was fighting mild nausea, so breakfast simply consisted of salads and cream cheese and a little fruit juice.
To make matters worse my wife insisted that I do a little exercise and have a short walk which I resisted but I was eventually foiled when the doctors surgery called to say that I was one vile short on yesterdays blood test. So off we went back to the surgery and for good measure and to make sure I got my short walk my wife parked about 100 meters away. So by the time I had got my blood taken I had walked 200 meters and I was shattered.
When we got home I took my temperature which was flirting with that magic 38C mark at 37.5C. Up until today I had been controlling the occasional nausea with zofran. But this time I had not and when I got home I vomited. In all honesty it was probably a good thing. Vomiting is the bodies way of expelling something that is unwanted and after the event I felt much better and my fever came down.
I was however completely spent, so I slept most of the day and the following night. Since then I have felt much better and now I'm probably back to the stage I was the day before I left Chicago. Until next time, stay well:)
To make matters worse my wife insisted that I do a little exercise and have a short walk which I resisted but I was eventually foiled when the doctors surgery called to say that I was one vile short on yesterdays blood test. So off we went back to the surgery and for good measure and to make sure I got my short walk my wife parked about 100 meters away. So by the time I had got my blood taken I had walked 200 meters and I was shattered.
When we got home I took my temperature which was flirting with that magic 38C mark at 37.5C. Up until today I had been controlling the occasional nausea with zofran. But this time I had not and when I got home I vomited. In all honesty it was probably a good thing. Vomiting is the bodies way of expelling something that is unwanted and after the event I felt much better and my fever came down.
I was however completely spent, so I slept most of the day and the following night. Since then I have felt much better and now I'm probably back to the stage I was the day before I left Chicago. Until next time, stay well:)
Saturday, April 28, 2012
Still Home Sweet Home
My word, it is good to be back. But I have to admit that it probably was the hardest trip I have ever had to do. The leg from Chicago to LA was pretty non eventful, but the one thing that never left was the constant fatigue. Every time it was time to get up and go somewhere (on the plane, off the plane etc...) I had this overwhelming feeling of lethargy because I quite simply didn't want to move. But sometimes you do what you must so you just have to suck it up and get on with it. And once I did I felt ok.
The main problem came about 3 hours away from home when I finally hit the wall. I started getting the sweats, feeling nauseas and extremely weak. I took my temperature and it was 99.5F. Oh dear, that is a low grade fever. I took some panadol and tried to relax and my temperature came down to 98.5F. Phew, I could start to relax but I still felt weak, nauseas and a general feeling of discomfort. Luckily when we got to Melbourne there was a wheel chair waiting for me, which is not just a easy way through the airport it is a way to fast track immigration so we got through the airport nice and quick.
At the other end it was lovely to see my kids waiting. And they looked very pleased to see me. I don't know whether it was because they were excited about the gifts we had for them or the fact they got the day off school? I'd like to think they were happy to see me;)
After a very smooth transition through the airport, the luck didn't continue and it took an hour to get home as the traffic was so heavy. Normally I wouldn't let that bother me but I'd had enough. Each extra minute I spent in the car felt like a small fire cracker being set off inside me fuelling my anxiety and frustration. The only thing I could do to relieve the stress is remind my father in law that his beloved Bombers lost to Collingwood by a point in the Anzac day blockbuster. Hehehe.
Finally I got home and it was a short trip from car to bed where I slept for best part of three hours. I would have slept longer but I had a doctors appointment so I dragged myself from the comfort of my soft quilted mattress and lovely soft doona and headed down to the doctor.
He gave me a work up seeing as I had a low grade fever which had returned when I saw him, wrote the scripts that they had recommended in Chicago, organised my blood work and told me to call him or go to emergency immediately if my temperature rose above 38C. (Back in Oz now so we're back on the metric system) After seeing the doc I had my blood drawn and then it was back home where I slept on the couch for a couple of hours, then to bed where I slept all night. Man, I needed the sleep.
Well, I think that is enough for today, until next time, stay well:)
The main problem came about 3 hours away from home when I finally hit the wall. I started getting the sweats, feeling nauseas and extremely weak. I took my temperature and it was 99.5F. Oh dear, that is a low grade fever. I took some panadol and tried to relax and my temperature came down to 98.5F. Phew, I could start to relax but I still felt weak, nauseas and a general feeling of discomfort. Luckily when we got to Melbourne there was a wheel chair waiting for me, which is not just a easy way through the airport it is a way to fast track immigration so we got through the airport nice and quick.
At the other end it was lovely to see my kids waiting. And they looked very pleased to see me. I don't know whether it was because they were excited about the gifts we had for them or the fact they got the day off school? I'd like to think they were happy to see me;)
After a very smooth transition through the airport, the luck didn't continue and it took an hour to get home as the traffic was so heavy. Normally I wouldn't let that bother me but I'd had enough. Each extra minute I spent in the car felt like a small fire cracker being set off inside me fuelling my anxiety and frustration. The only thing I could do to relieve the stress is remind my father in law that his beloved Bombers lost to Collingwood by a point in the Anzac day blockbuster. Hehehe.
Finally I got home and it was a short trip from car to bed where I slept for best part of three hours. I would have slept longer but I had a doctors appointment so I dragged myself from the comfort of my soft quilted mattress and lovely soft doona and headed down to the doctor.
He gave me a work up seeing as I had a low grade fever which had returned when I saw him, wrote the scripts that they had recommended in Chicago, organised my blood work and told me to call him or go to emergency immediately if my temperature rose above 38C. (Back in Oz now so we're back on the metric system) After seeing the doc I had my blood drawn and then it was back home where I slept on the couch for a couple of hours, then to bed where I slept all night. Man, I needed the sleep.
Well, I think that is enough for today, until next time, stay well:)
Thursday, April 26, 2012
Home sweet home
Finally I'm home. The trip was ok but I hit the wall about three hours out. I'll post more tomorrow when I have rested some more. Stay well:)
Wednesday, April 25, 2012
In Transit
Right now I'm sitting in the Virgin Australia lounge room at LAX, and for lack of a better word, I'm buggered. I woke up this morning and I didn't feel the best. Maybe it was because I had the busiest day I've had since transplant yesterday, or maybe it was because I was nervous about getting sick on the plane, I don't know.
All I know is for the first time in a couple of days I felt nauseous. Luckily, I still had some Zofran so I took one of them and I was right as rain. The other problem I had though that bothered me a little more was for the very first time the site of my PICC line had started to ache. Not good. I had planned on phoning Amy anyway that day to let her know I was going home and just to say thanks, so I raised it with her then. As there was no swelling or redness and I didn't have a fever she said it was most probably nothing but if it still bothered me when I got back to Melbourne to raise it with my doctors there. Most probably I just slept on it in an awkward way.
Anyway, so far today has been really long. Not that things have gone badly they haven't. But airports are tiring at the best of times and we have already had a four hour flight from Chicago to LA and on Chicago time it is currently midnight. I am looking forward to getting on the plane having a bite and then going to sleep. Thankfully I have had no trouble sleeping since SCT which I would imagine has made it much easier for me.
And to think in just 18 hours time I will finally be able to rest my head on my own pillow in my own bed. What a luxury. But it can't last too long as the day I return I have a doctors appointment to organise all my follow up blood tests etc.... It will be interesting to see my counts as I have noticed today I have been getting a little short of breath which would indicate that my haemoglobin is dropping. It would have been artificially boosted by the transfusion I had the day I left hospital but hopefully my stem cells are starting to engraft properly and my red cell count will start to rise naturally. Until next time, stay well:)
All I know is for the first time in a couple of days I felt nauseous. Luckily, I still had some Zofran so I took one of them and I was right as rain. The other problem I had though that bothered me a little more was for the very first time the site of my PICC line had started to ache. Not good. I had planned on phoning Amy anyway that day to let her know I was going home and just to say thanks, so I raised it with her then. As there was no swelling or redness and I didn't have a fever she said it was most probably nothing but if it still bothered me when I got back to Melbourne to raise it with my doctors there. Most probably I just slept on it in an awkward way.
Anyway, so far today has been really long. Not that things have gone badly they haven't. But airports are tiring at the best of times and we have already had a four hour flight from Chicago to LA and on Chicago time it is currently midnight. I am looking forward to getting on the plane having a bite and then going to sleep. Thankfully I have had no trouble sleeping since SCT which I would imagine has made it much easier for me.
And to think in just 18 hours time I will finally be able to rest my head on my own pillow in my own bed. What a luxury. But it can't last too long as the day I return I have a doctors appointment to organise all my follow up blood tests etc.... It will be interesting to see my counts as I have noticed today I have been getting a little short of breath which would indicate that my haemoglobin is dropping. It would have been artificially boosted by the transfusion I had the day I left hospital but hopefully my stem cells are starting to engraft properly and my red cell count will start to rise naturally. Until next time, stay well:)
Adios Chicago
Thank you Chicago. I've had a great time here and I certainly have some memories that I won't forget in a hurry. I've met some wonderful people, eaten some great food and aside from my time in hospital, I've had some great experiences. But thankfully it's time to go home!
I'm going home. I'm going home.
I'm getting on the plane that will take me home.
I'm going back across the sea,
to the place where I can be.
Home, sweet home.
I'm going home. I'm going home.
I'm getting on the plane that will take me home.
I'm going back across the sea,
to the place where I can be.
Home, sweet home.
Tuesday, April 24, 2012
Day +12 and 13
Day 12 was really more of the same. However, I did think it was about time to get outside and have a little walk. So I steeled myself up and was already to go just when I started to feel a little light headed and dizzy, so instead of going for a walk I did an about face to the bedroom, had a lie down and fell asleep for two hours.
So day 13 started pretty much the same way as day 12 but I thought that I should pull my finger out, so about 3.30pm for the first time in four days I went, wait for it....... Outside! We didn't walk far, we went to the Prentice Women's hospital and went up and saw Bob and Wendy. Both are suffering a little but that is to be expected. They were both in good spirits though and I'm sure they will come through the process stronger and healthier.
As for me, I'm feeling a little better than yesterday but still not 100%. Honestly, I don't think I'll be there for a while. And this time tomorrow, I'm going home! Until then, stay well:)
So day 13 started pretty much the same way as day 12 but I thought that I should pull my finger out, so about 3.30pm for the first time in four days I went, wait for it....... Outside! We didn't walk far, we went to the Prentice Women's hospital and went up and saw Bob and Wendy. Both are suffering a little but that is to be expected. They were both in good spirits though and I'm sure they will come through the process stronger and healthier.
As for me, I'm feeling a little better than yesterday but still not 100%. Honestly, I don't think I'll be there for a while. And this time tomorrow, I'm going home! Until then, stay well:)
Monday, April 23, 2012
Day +11
I am getting quite frustrated at the moment. I think it is a combination of wanting to go home, being cooped up in a hotel room, being bored and still feeling generally crappy. I could go out if I wanted, but the more places I go and the more people I interact with the greater the chance I have of catching something which could jeopardise my chance of returning home.
But because I'm frustrated I'm also quite cranky and grouchy at the moment and a little incident last night really set me off. It was about 10.00pm, my wife and I were just getting ready for bed and we started smelling cigarette smoke from the adjoining room next door. Now the Seneca does have smoking floors but I am not staying on one of them. Plain and simply I just got pissed off.
Now maybe I'm just being pedantic, but with a markedly suppressed immune system one is not just susceptible to catching colds etc, you are also more susceptible to the effects of toxins such that you would find in cigarette smoke. I have a very low threshold right now so short of going next door and giving the bloke a huge spray about being selfish and antisocial I rang reception and made my complaint.
Just to clarify, I wasn't rude but I was assertive and I think I got what I wanted because we haven't smelt any smoke since. Man, I am so ready to go home. Only two days to go...... Stay well:)
Ps. Thinking of you Bob and Wendy. Stay strong, it will all be worth it in the end!
But because I'm frustrated I'm also quite cranky and grouchy at the moment and a little incident last night really set me off. It was about 10.00pm, my wife and I were just getting ready for bed and we started smelling cigarette smoke from the adjoining room next door. Now the Seneca does have smoking floors but I am not staying on one of them. Plain and simply I just got pissed off.
Now maybe I'm just being pedantic, but with a markedly suppressed immune system one is not just susceptible to catching colds etc, you are also more susceptible to the effects of toxins such that you would find in cigarette smoke. I have a very low threshold right now so short of going next door and giving the bloke a huge spray about being selfish and antisocial I rang reception and made my complaint.
Just to clarify, I wasn't rude but I was assertive and I think I got what I wanted because we haven't smelt any smoke since. Man, I am so ready to go home. Only two days to go...... Stay well:)
Ps. Thinking of you Bob and Wendy. Stay strong, it will all be worth it in the end!
Sunday, April 22, 2012
Day +10
Well I honestly didn't expect to be out of the hospital until at least today so to have been out for a day was very much a pleasant surprise. And even though I'm not home yet (which would be ideal) there are some luxuries about not being in the hospital.
First, my bed is not constantly inflating and deflating and making noises that keep me awake. I don't have an IV pole that has numerous flashing lights and when it notices a problem will beep angrily at me. I am PICCless. As far as IV access goes, the PICC line was without doubt the most comfortable line I've ever had, but it is still so much nicer not to have it and I don't have to have my arm glad wrapped up to take a shower. Lastly, it is nice not to be woken up at 2.00am for blood tests and again at 5.00am for weighing, blood pressure, temperature and pulse etc...
So how am I feeling now? I am still really tired. It is still quite a struggle to summon the energy to do something like have a shower and afterwards I am completely spent. I also have a very small appetite although the nausea is no longer around. On the plus I am feeling a little stronger and a little better every day. Until next time, stay well:)
First, my bed is not constantly inflating and deflating and making noises that keep me awake. I don't have an IV pole that has numerous flashing lights and when it notices a problem will beep angrily at me. I am PICCless. As far as IV access goes, the PICC line was without doubt the most comfortable line I've ever had, but it is still so much nicer not to have it and I don't have to have my arm glad wrapped up to take a shower. Lastly, it is nice not to be woken up at 2.00am for blood tests and again at 5.00am for weighing, blood pressure, temperature and pulse etc...
So how am I feeling now? I am still really tired. It is still quite a struggle to summon the energy to do something like have a shower and afterwards I am completely spent. I also have a very small appetite although the nausea is no longer around. On the plus I am feeling a little stronger and a little better every day. Until next time, stay well:)
Saturday, April 21, 2012
Survivor Story
In case you haven't figured it out from reading my previous posts, one thing that I really enjoy is cricket. One of the players that I love to watch is an Indian guy by the name Yuvraj Singh.
Unfortunately for Yuvraj, about a year ago he contracted a rare form of cancer, and like anyone that contracts a serious disease it threw him through the ringer both physically and mentally. Fortunately, his treatment in the USA was successful and he is now cancer free. What I really like is his attitude and how his perspective on life has changed.
In a way I think that beating cancer may have even made him a stronger, better person. I think that his story anyone that has contracted a serious disease can relate to. Here is the article. Enjoy and stay well:)
http://www.espncricinfo.com/india/content/story/560796.html
Unfortunately for Yuvraj, about a year ago he contracted a rare form of cancer, and like anyone that contracts a serious disease it threw him through the ringer both physically and mentally. Fortunately, his treatment in the USA was successful and he is now cancer free. What I really like is his attitude and how his perspective on life has changed.
In a way I think that beating cancer may have even made him a stronger, better person. I think that his story anyone that has contracted a serious disease can relate to. Here is the article. Enjoy and stay well:)
http://www.espncricinfo.com/india/content/story/560796.html
Day +9
Well what a relief. I was told I could go home! But as my haemoglobin was only 8 before I left they wanted to give me a blood transfusion. I wasn't really that mad on the idea but I have to say after I received the blood I felt so much better.
Saying that, I still do not feel 100%, far from it. I get tired at the drop of a hat especially when I'm active and although nausea has thankfully left the building I have no appetite. I could quite happily go without eating all day but I eat because I have to.
Anyway, back to the transfusion. It was definitely going to happen so I was thinking twenty minutes and we'd all be done...... Ummmmmm, no. The infusion took six hours. Blood has to be pumped in very slowly. So about 4.30pm I was finally ready to go. But there was one thing left to do.
Four CIDP patients were all at the hospital at the same time for SCT. So we all gathered in the common area for a chin wag and a catch up. Afterwards, transport services came with a wheel chair to take me down stairs so I could catch a cab back to the hotel with my wife. Freedom at last.
A last note I would like to make is to thank the anonymous people who donated blood that I received. I'll also put out a call to all and sundry that if you are well, fit and healthy, go and give blood. Someone, somewhere will thank you for it. Stay well:)
Saying that, I still do not feel 100%, far from it. I get tired at the drop of a hat especially when I'm active and although nausea has thankfully left the building I have no appetite. I could quite happily go without eating all day but I eat because I have to.
Anyway, back to the transfusion. It was definitely going to happen so I was thinking twenty minutes and we'd all be done...... Ummmmmm, no. The infusion took six hours. Blood has to be pumped in very slowly. So about 4.30pm I was finally ready to go. But there was one thing left to do.
Four CIDP patients were all at the hospital at the same time for SCT. So we all gathered in the common area for a chin wag and a catch up. Afterwards, transport services came with a wheel chair to take me down stairs so I could catch a cab back to the hotel with my wife. Freedom at last.
A last note I would like to make is to thank the anonymous people who donated blood that I received. I'll also put out a call to all and sundry that if you are well, fit and healthy, go and give blood. Someone, somewhere will thank you for it. Stay well:)
The Fab Four
There was but one single day when four CIDP patients were going through the SCT at the same time and we all met up in the patient waiting room for a quick chat and a photo opportunity. From left to right it's Bob, me Wendy and Cory.
Also thanks to Bob from whom I shamelessly ripped the photo off without permission;) Stay well:)
Also thanks to Bob from whom I shamelessly ripped the photo off without permission;) Stay well:)
Thursday, April 19, 2012
Great news!
So I got my blood work back today and my WBC is up to 1.2. The best thing about this is I get to go home. Yes, I've been told I can go home but there is one small snag.
My haemoglobin is back down to 8, so before I go Amy and Dr Burt want me tho have a transfusion which has yet to get started. I have read that a lot of patients feel much better after a transfusion, so I am hoping that I will feel much better then I can go home.
I feel that there is finally some closure to this whole episode. Just getting home is all that is on my mind at the moment. Stay well:)
My haemoglobin is back down to 8, so before I go Amy and Dr Burt want me tho have a transfusion which has yet to get started. I have read that a lot of patients feel much better after a transfusion, so I am hoping that I will feel much better then I can go home.
I feel that there is finally some closure to this whole episode. Just getting home is all that is on my mind at the moment. Stay well:)
Day +8
Well I had some good news this morning and more good news this evening. They were worried about my haemoglobin and were a hares breath away from transfusing me. They would have done so after a blood test they did this afternoon if my haemoglobin level hadn't increased, but it had. It had gone from 8.2 to 9!
I am still a long way from normal, but apparently when one of your counts comes up the rest follow pretty quickly, so hopefully I will only have two more nights in here. I guess I have to wait until tomorrow morning to see my WBC.
In truth, I still feel pretty ordinary. I feel better than yesterday, but still a long way from normal. My appetite is still way down and I am eating because I should not because I want to. But I did this for the long term not the short and recovery will continue. Until then, sty well:)
I am still a long way from normal, but apparently when one of your counts comes up the rest follow pretty quickly, so hopefully I will only have two more nights in here. I guess I have to wait until tomorrow morning to see my WBC.
In truth, I still feel pretty ordinary. I feel better than yesterday, but still a long way from normal. My appetite is still way down and I am eating because I should not because I want to. But I did this for the long term not the short and recovery will continue. Until then, sty well:)
Wednesday, April 18, 2012
Good news!
Well my counts are still really low, BUT, my haemoglobin has risen from 8.1 to 8.2 and my platelet count is up from from 42 to 49. Still a long way off the minimum normal of 140, but they only give pack cells if your count is below 20, so chances are I've definitely avoided a pack cells transfusion and hopefully I'll avoid a normal blood transfusion.
It looks like my body is slowly waking up from the blood cell producing coma that was induced by the chemo. However, my haemoglobin is still just teetering above the transfusion rate. So far I'm ok but I won't be out the woods here until my count has made a significant increase.
But the best news is the stirring in my WBC. Now it is fairly innocuous, but my WBC is no longer <0.1 or TLTC, but actually registered at 0.1! Hopefully this is the sign of something more and by tomorrow my count will be at going home levels. Until next time, stay well:)
It looks like my body is slowly waking up from the blood cell producing coma that was induced by the chemo. However, my haemoglobin is still just teetering above the transfusion rate. So far I'm ok but I won't be out the woods here until my count has made a significant increase.
But the best news is the stirring in my WBC. Now it is fairly innocuous, but my WBC is no longer <0.1 or TLTC, but actually registered at 0.1! Hopefully this is the sign of something more and by tomorrow my count will be at going home levels. Until next time, stay well:)
Day +7
I had a little setback today. When I woke this morning I felt better than I had felt any morning this week. Anyway, I felt I should try to get my day started properly so I got the PCT to glad wrap my arm in preparation for a shower.
I got out of bed and gingerly walked to the bathroom where my first port of call was to evacuate my bowels. Apologies for the visual image I have bestowed upon you, but it is part of the story. If you are feeling fragile or sensitive right now may I suggest you don't read or read another day.
Now I have not been constipated or had diarrhoea but I have had the next worst thing, the sticky, tarry stool that is hard to evacuate and clean. Yes, a disgusting topic but bear with me. So I sat down on the toilet and as soon as I did I started feeling faint. Halfway through my movement I decided to pull the help cord. So I was now feeling faint, I was also messy. I have to admit that my pride and embarrassment were fighting a battle with my common sense as I was in a horribly compromising position but clearly in need of assistance. I'm glad my common sense won out as two minutes after the arrival of assistance I passed out.
Luckily I didn't fully come too until I was back in bed, but apparently I passed out again an I was nice and clean wearing adult disposable undies. Some questions like "How did I get there?" need to and do remain unknown and unanswered. Well, at least by me anyway.
The question that did need to be asked and answered was why? I had a full spread of blood work and they took my vitals. Two things raised a flag. First my blood pressure was way low. I mean 75 over 47 low. Some of the drugs I take for other conditions are used to treat blood pressure. Alone these pills are not enough to send my BP that low under normal circumstances, but SCT can also send your BP down. I have since ceased taking those drugs and have been hydrated intravenously and my BP is now a much more respectful 108 over 65.
Second, my haemoglobin count was significantly lower than 12 hours before. Normal count is 13.0 - 17.5. My count the night before was 9.6. Post fainting it was 8.1. Just to be clear when it gets to <8 they give you a mandatory transfusion. I guess that only having 60% of your recommended oxygen carrying cells tells them it's time to intervene. I think this and the BP would be what would be responsible for my little episode.
FYI, right now I am feeling fine. As good as I have felt since transplant day so I feel with a close eye on my BP and haemoglobin this shouldn't happen again. While I'm on the subject I would also like to say a big thanks to Missy, my nurse and Kenya, my PCT for the wonderful job they did. They saw me at my worst and did not blink or pass judgement. They were both professional and compassionate as have all the nurses and PCT's on the 15th floor of the Prentise Women's building have been. When I passed out they also stopped me cracking my head open on the tiled bathroom floor.
Right now I seriously feel fine, so please don't worry about me. The biggest wound was suffered by my pride and that will recover too. Until next time, stay well:)
I got out of bed and gingerly walked to the bathroom where my first port of call was to evacuate my bowels. Apologies for the visual image I have bestowed upon you, but it is part of the story. If you are feeling fragile or sensitive right now may I suggest you don't read or read another day.
Now I have not been constipated or had diarrhoea but I have had the next worst thing, the sticky, tarry stool that is hard to evacuate and clean. Yes, a disgusting topic but bear with me. So I sat down on the toilet and as soon as I did I started feeling faint. Halfway through my movement I decided to pull the help cord. So I was now feeling faint, I was also messy. I have to admit that my pride and embarrassment were fighting a battle with my common sense as I was in a horribly compromising position but clearly in need of assistance. I'm glad my common sense won out as two minutes after the arrival of assistance I passed out.
Luckily I didn't fully come too until I was back in bed, but apparently I passed out again an I was nice and clean wearing adult disposable undies. Some questions like "How did I get there?" need to and do remain unknown and unanswered. Well, at least by me anyway.
The question that did need to be asked and answered was why? I had a full spread of blood work and they took my vitals. Two things raised a flag. First my blood pressure was way low. I mean 75 over 47 low. Some of the drugs I take for other conditions are used to treat blood pressure. Alone these pills are not enough to send my BP that low under normal circumstances, but SCT can also send your BP down. I have since ceased taking those drugs and have been hydrated intravenously and my BP is now a much more respectful 108 over 65.
Second, my haemoglobin count was significantly lower than 12 hours before. Normal count is 13.0 - 17.5. My count the night before was 9.6. Post fainting it was 8.1. Just to be clear when it gets to <8 they give you a mandatory transfusion. I guess that only having 60% of your recommended oxygen carrying cells tells them it's time to intervene. I think this and the BP would be what would be responsible for my little episode.
FYI, right now I am feeling fine. As good as I have felt since transplant day so I feel with a close eye on my BP and haemoglobin this shouldn't happen again. While I'm on the subject I would also like to say a big thanks to Missy, my nurse and Kenya, my PCT for the wonderful job they did. They saw me at my worst and did not blink or pass judgement. They were both professional and compassionate as have all the nurses and PCT's on the 15th floor of the Prentise Women's building have been. When I passed out they also stopped me cracking my head open on the tiled bathroom floor.
Right now I seriously feel fine, so please don't worry about me. The biggest wound was suffered by my pride and that will recover too. Until next time, stay well:)
Very interesting
A post from one of my favourite bloggers illuminating the problems with lawyers in the medical system.
http://runningahospital.blogspot.com/2012/04/different-kind-of-malpractice.html
Stay well:)
http://runningahospital.blogspot.com/2012/04/different-kind-of-malpractice.html
Stay well:)
Tuesday, April 17, 2012
Day +6
When I was at uni at Newcastle I once caught the bus from the university to the city centre. It was pretty much your standard bus trip with one exception. A group of about six surfers who were on their way check out how filth the surf at the city beaches were had also boarded the bus. And they sang a song. It went:-
I know a song that'll get on your nerves, get on your nerves, get on your nerves.
I know a song that'll get on your nerves all day long.
Second verse same as the first.
I know a song that'll get on your nerves, get on your nerves, get on your nerves.
I know a song that'll get on your nerves all day long.
Second verse same as the first.
I know a song that'll get on your nerves, get on your nerves, get on your nerves.
I know a song that'll get on your nerves all day long.
....................................
I guess you get the idea. But although I did not admire their musical talent, you had to admire their tenacity. They kept it up for the whole trip. All 36 minuets of it. By the time I had arrived at my destination I was screaming for the ordeal to be over, and that is sort of how I feel now. I am screaming to get out of here. I just want to walk outside, sleep in a bed not made of plastic and just be surrounded by familiarity.
Well four days to go (hopefully) and then they should let me go provided my counts are ok. Speaking of which my white cells are still TLTC, but my red cells and platelets although still dropping seem to be doing so slower. Hopefully they will stabilise and start to return to normal before they have to give me a transfusion but apparently that is quite rare so they will do what they have to.
Well, that's it from me today. Stay well:)
Monday, April 16, 2012
Day +5
On day four I made the conscious decision that I should, where possible, cut down on the drugs they are giving me. In nearly every recovery there is a time where you no longer need them and I personally would rather not take than take them.
So I decided that the anti nausea should cease. And I stopped taking them for most of the morning of day +4. However, when I woke up this morning the nausea ha returned with a vengeance. Not that it was a big problem, one dose of Zofran and back on the marinol I was fine. I don't want to stay on the drugs much longer, but if they are still necessary.
Well they tell me that your counts stay down until between days +8 and +12, so I feel like I am about half way there. If I could get out on day 8 that would be awesome, but realistically I think it will be around day 10.
On another note a dermatologist came round to view my rash and biopsy a part of it. They say that they will want me to put cream on it all the time, and I feel as though with it still not itching or painful and looking as though it is clearing up I was more for just leaving it. But with the biopsy already done I guess I will get an answer.
Until next time stay well:)
Ps. I would like to extend my warmest wishes to Bob, who is having his PICC line placed tomorrow and Wendy who is having a small procedure with the cardiologist. Here's hoping it will not be a bigger procedure and will delay her from the program.
So I decided that the anti nausea should cease. And I stopped taking them for most of the morning of day +4. However, when I woke up this morning the nausea ha returned with a vengeance. Not that it was a big problem, one dose of Zofran and back on the marinol I was fine. I don't want to stay on the drugs much longer, but if they are still necessary.
Well they tell me that your counts stay down until between days +8 and +12, so I feel like I am about half way there. If I could get out on day 8 that would be awesome, but realistically I think it will be around day 10.
On another note a dermatologist came round to view my rash and biopsy a part of it. They say that they will want me to put cream on it all the time, and I feel as though with it still not itching or painful and looking as though it is clearing up I was more for just leaving it. But with the biopsy already done I guess I will get an answer.
Until next time stay well:)
Ps. I would like to extend my warmest wishes to Bob, who is having his PICC line placed tomorrow and Wendy who is having a small procedure with the cardiologist. Here's hoping it will not be a bigger procedure and will delay her from the program.
Sunday, April 15, 2012
Day +4
So, it has now been four days since my transplant and six days since my last bout of chemotherapy and if I am to be honest I have to say I still feel like crap.
But 'crap' is such a wee fickle and relative word. Compared to four days ago, I feel amazing. However, I am still a long way from normal. It is still a struggle to walk one lap of the ward and summoning up the strength to have a morning shower feels like mustering up the power to run a marathon.
But I don't want to whinge. Now I am through the other side and fingers crossed, it will all be onwards and upwards from here. But I did have a slight hiccup today. It was strange because as I said before I felt fine (relatively) so I was surprised when my temperature came in at 100.4F. That was considered a low grade fever.
Interestingly enough, I normally feel like I know when a fever is coming on, but here I was genuinely surprised. Anyway, they gave me an extra shot of antibiotics and everything is back to where it should be. The other thing I noticed was that I have developed a rash on my trunk and back. Since it doesn't itch or hurt and looks like clearing up, the doctors are not too worried.
Well, tomorrow I hope that I can go back to giving you lots of boring news and I'll be feeling better still. Until next time, stay well:)
But 'crap' is such a wee fickle and relative word. Compared to four days ago, I feel amazing. However, I am still a long way from normal. It is still a struggle to walk one lap of the ward and summoning up the strength to have a morning shower feels like mustering up the power to run a marathon.
But I don't want to whinge. Now I am through the other side and fingers crossed, it will all be onwards and upwards from here. But I did have a slight hiccup today. It was strange because as I said before I felt fine (relatively) so I was surprised when my temperature came in at 100.4F. That was considered a low grade fever.
Interestingly enough, I normally feel like I know when a fever is coming on, but here I was genuinely surprised. Anyway, they gave me an extra shot of antibiotics and everything is back to where it should be. The other thing I noticed was that I have developed a rash on my trunk and back. Since it doesn't itch or hurt and looks like clearing up, the doctors are not too worried.
Well, tomorrow I hope that I can go back to giving you lots of boring news and I'll be feeling better still. Until next time, stay well:)
Day +3
I think what I need more than anything is some patients. Don't get me wrong, I know I can't go anywhere and I don't plan to. Honestly, leaving the sterile environment of the 15th floor Prentise building without the benefits of IV antibiotics would be really stupid, but I've been away from home a long time now and I am just willing the days until my counts are back up and I can go.
Aside from that, my counts are still bottomed out and I can't expect them to pick up by themselves for at least five more days. But for me, for now it is just trying to pass the time and feel as well as possible. Until next time, stay well:)
Aside from that, my counts are still bottomed out and I can't expect them to pick up by themselves for at least five more days. But for me, for now it is just trying to pass the time and feel as well as possible. Until next time, stay well:)
Thanks for the shirt Bob
Thanks to Bob for getting these made up. The number 28 is my number in the CIDP transplant list.
Saturday, April 14, 2012
Transplant video
Video that was taken during my transplant. I'm pretty out of it courtesy of the pre meds. Hope you enjoy, and stay well:)
Day +2
Every day I'm feeling a little better and a little stronger. I'm still relying on the marinol for a little anti nausea and to give me a small feeling of appetite, but hopefully tomorrow that cease to be the case and I'll be able to eat unrestrained.
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Friday, April 13, 2012
Day +1
I really wanted to write these posts on the day of the day I actually passed through them. I am a day behind, but I am OK with that. I think that to be anywhere else would be unrealistic.
So how am I feeling? I feel better than yesterday and hopefully that will be a trend that will continue as I progress. The biggest problem however is the dribbling. Saliva keeps running to my mouth and if I do not expel it will make me feel sick. But being in hospital is not the time to worry about manners and etiquette, so my best friend has been a delightful yellow bucket that I can use to contain any unwanted discharges.
But even though I still feel pretty ordinary I am actually exactly where I want to be. When you go into something like this you don't expect to just feel good the very next day. I expected the slow deterioration through the chemotherapy and so far the recovery from that has been pretty much what I could have imagined.
Saying that, I am currently neutropenic, basically meaning I don't have an immune system so there is plenty of potential for things to go wrong. Hopefully they won't. They are giving me plenty of antibiotics, so for now, it is just sit back relax and recover. Until tomorrow, stay well:)
So how am I feeling? I feel better than yesterday and hopefully that will be a trend that will continue as I progress. The biggest problem however is the dribbling. Saliva keeps running to my mouth and if I do not expel it will make me feel sick. But being in hospital is not the time to worry about manners and etiquette, so my best friend has been a delightful yellow bucket that I can use to contain any unwanted discharges.
But even though I still feel pretty ordinary I am actually exactly where I want to be. When you go into something like this you don't expect to just feel good the very next day. I expected the slow deterioration through the chemotherapy and so far the recovery from that has been pretty much what I could have imagined.
Saying that, I am currently neutropenic, basically meaning I don't have an immune system so there is plenty of potential for things to go wrong. Hopefully they won't. They are giving me plenty of antibiotics, so for now, it is just sit back relax and recover. Until tomorrow, stay well:)
My room for transplant
I'll talk more about the rooms in more detail later. They do so much better here in the USA, but visa versa too. I think explaining these differences may lead to better health care ideas in both countries. For now, here is the video of my room. Stay well:)
Wednesday, April 11, 2012
Transplant Day!
The day I have been waiting for is finally here. I would love to say that it was all pomp and ceremony, glitz and glamor, but the whole parade was quite anticlimactic really. Or was it? From the outside looking in it may look like that, but from the inside it is massive. Truly I have struggled with the words and honestly I could not better than the words of my friend Bob Boen who wrote this on FaceBook.
"Today is a very special day! Not for me, but for two of my very good friends in the SCT unit at Northwestern. As I write this note, Andrew Price and Cory Smallegan are both undergoing their Stem Cell Transplantation procedures up on the 15th floor at the Prentice Hospital on the Northwestern Campus.
I know that their wives, Suzie Price and Amanda Smallegan are there with them to aid and comfort them both, and will be with them to share in the success and achievement of the day. This has not been an easy road to travel for either Andrew or Cory, as they had to fight very hard just to get into the program in the first place, and then struggle just as hard to cope with the multiple number of tests and procedures just to stay in the program.
This is not an easy road to walk. Trust me on this... I know of what I speak.
Cory and Andrew will join a very rare and exclusive club today. They will become the 27th and 28th persons (respectively) in North America to become CIDP Stem Cell Transplant survivors, and thence to have a chance to put this disease into remission.
I will follow them in 15 days with my transplantation on April 25th, followed by my friend Wendy Nash with her transplant on April 26th.
Our entry back into the program should in no way diminish Andrew and Cory's accomplishment of today, but rather should serve to underscore our mutual deep sense of gratitude and thanks towards Dr. Burt and his staff for getting us to this point at all!"
"Today is a very special day! Not for me, but for two of my very good friends in the SCT unit at Northwestern. As I write this note, Andrew Price and Cory Smallegan are both undergoing their Stem Cell Transplantation procedures up on the 15th floor at the Prentice Hospital on the Northwestern Campus.
I know that their wives, Suzie Price and Amanda Smallegan are there with them to aid and comfort them both, and will be with them to share in the success and achievement of the day. This has not been an easy road to travel for either Andrew or Cory, as they had to fight very hard just to get into the program in the first place, and then struggle just as hard to cope with the multiple number of tests and procedures just to stay in the program.
This is not an easy road to walk. Trust me on this... I know of what I speak.
Cory and Andrew will join a very rare and exclusive club today. They will become the 27th and 28th persons (respectively) in North America to become CIDP Stem Cell Transplant survivors, and thence to have a chance to put this disease into remission.
I will follow them in 15 days with my transplantation on April 25th, followed by my friend Wendy Nash with her transplant on April 26th.
Our entry back into the program should in no way diminish Andrew and Cory's accomplishment of today, but rather should serve to underscore our mutual deep sense of gratitude and thanks towards Dr. Burt and his staff for getting us to this point at all!"
On a less up beat note, our friend Wendy Nash, who is slated for her transplant on the 26th of April has had some complications. Please could you all spare a thought for her as she tries to come to terms with this ordeal.
Until next time, stay well:)
Tuesday, April 10, 2012
Day-1
Just a short one today. Will write more tomorrow. The chemo is really taking its toll - nausea, vomiting etc. but at least it is over now. Stay well:)
Monday, April 9, 2012
Day -2
You know I woke up feeling OK. With all the drugs that they have pumped into my system I really deserve to feel a whole lot worse. Unfortunately the OK feeling only lasted about fifteen minutes as I started to feel nauseous and I had that horrid feeling of spit continually welling up in my mouth.
In order to combat this the nurses brought me a tasty shot of Zofran and a delightful yellow bucket to use as a spittoon. At around 6 am they also came in to give me my morning dose of Lasix. Lasix is a drug I have come to detest as it makes you go to the toilet an awful lot and in general is not very pleasant as it makes my kidneys hurt.
Around 8.30am the doctor came in to check my lab work and EKG. He made a recommendation for my nausea a drug called Marinol. Also known as medical marijuana. As a first for me, the main side effect that was most pleasing was that food actually became appetising again and I managed to eat after which I had a very nice sleep.
On another plus I am now done with all the chemo so now I just have to wait for my cell counts to bottom out and my stem cell infusion on Tuesday and from then it is onward and upward to recovery.
Until next time, stay well:)
In order to combat this the nurses brought me a tasty shot of Zofran and a delightful yellow bucket to use as a spittoon. At around 6 am they also came in to give me my morning dose of Lasix. Lasix is a drug I have come to detest as it makes you go to the toilet an awful lot and in general is not very pleasant as it makes my kidneys hurt.
Around 8.30am the doctor came in to check my lab work and EKG. He made a recommendation for my nausea a drug called Marinol. Also known as medical marijuana. As a first for me, the main side effect that was most pleasing was that food actually became appetising again and I managed to eat after which I had a very nice sleep.
On another plus I am now done with all the chemo so now I just have to wait for my cell counts to bottom out and my stem cell infusion on Tuesday and from then it is onward and upward to recovery.
Until next time, stay well:)
Sunday, April 8, 2012
Day -3
It's getting eerily close now, only three days until my new birthday. Luckily, so far I have not felt that bad, and today I managed to get my morning routine out the way before they started all the premeds. I also managed to get the first round of lasix out the way early so that when the ativan, benadryl and chemotherapy came to the party I was ready for nothing but a nice little nap. And that I did. I felt a little bit bad for my mother who was there to keep me company and all I did was sleep.
But it hasn't all been plain sailing today. To start with I have found it much harder to sleep at the right times. I was getting into a routine of sleeping when the sedating meds were in force, and then being awake when they were off. Now, no matter how much steroids they give me I still feel tired. I think I will be hitting a period of 16 - 18 hours of sleep per day.
Secondly, as I had expected, my appetite has diminished somewhat. I have had a little nausea but no vomiting. Realistically I feel quite lucky. After reading about the experiences of others who have had chemotherapy for the same reason and for others, nausea and vomitting is one thing that they have not been able to control no matter what the medications they have used.
As I said before, expect the worst but hope for the best. So far I admit it has been no picnic, but it has been way better than I thought it would be. Realistically I always assumed it would be somewhere in the middle, but I am currently batting well above average. Touch wood, I will stay that way.
The last side effect that has been bestowed upon me, and it is really not that big a problem is the hiccups. Yes, after each meal or a big drink I seem to have an uncontrollable bout of hiccups. But come on, is it really that bad? Everyone has had the hiccups from time to time and they always seem to pass after about five or ten minutes.
So that is it for my day. Right now I am just waiting for the rabbit ATG to run out and one more dose of lasix and then I'lll be done. Just one more day of chemo left, two more ATG's followed by stem cell infusion. It's all getting eerily close. Stay well:)
But it hasn't all been plain sailing today. To start with I have found it much harder to sleep at the right times. I was getting into a routine of sleeping when the sedating meds were in force, and then being awake when they were off. Now, no matter how much steroids they give me I still feel tired. I think I will be hitting a period of 16 - 18 hours of sleep per day.
Secondly, as I had expected, my appetite has diminished somewhat. I have had a little nausea but no vomiting. Realistically I feel quite lucky. After reading about the experiences of others who have had chemotherapy for the same reason and for others, nausea and vomitting is one thing that they have not been able to control no matter what the medications they have used.
As I said before, expect the worst but hope for the best. So far I admit it has been no picnic, but it has been way better than I thought it would be. Realistically I always assumed it would be somewhere in the middle, but I am currently batting well above average. Touch wood, I will stay that way.
The last side effect that has been bestowed upon me, and it is really not that big a problem is the hiccups. Yes, after each meal or a big drink I seem to have an uncontrollable bout of hiccups. But come on, is it really that bad? Everyone has had the hiccups from time to time and they always seem to pass after about five or ten minutes.
So that is it for my day. Right now I am just waiting for the rabbit ATG to run out and one more dose of lasix and then I'lll be done. Just one more day of chemo left, two more ATG's followed by stem cell infusion. It's all getting eerily close. Stay well:)
Saturday, April 7, 2012
Day -4
Day -4 has been very similar to Day -5. The main difference being that today I was foiled by my own procrastination. My PCT came in bright and early and wrapped my arm up ready for a shower. I then proceeded to lie in bed for another half an hour because I was feeling extremely lethargic. Just as I was about to make the giant leap from bed to bathroom a nurse came in to administer my pre-medications. Unfortunately this meant that I had to postpone my shower again.
So I decided to remove the cling wrap around my PICC line as the pre-medications were slowly infused. At this time, my breakfast also arrived which fortunately I managed quite easily. At this point the combination of Benadryl and Ativan had kicked in quite nicely and I slept through until lunchtime. After lunch, which also went down quite easily, I had the pre-meds for the Rabbit ATG, which again made me feel sleepy. Unfortunately, at this point, they also gave me Lasix so, instead of sleeping, I was up every ten minutes to relieve my bladder. During this time I watched a movie called The In-Betweeners. It was very funny but I would not recommend it for children or the morally sensitive.
It was at this point things took a small turn for the worse as I started to get a stomach ache and I felt a little nauseous. Instead of taking more Zofran I decided to take some Composine as I am only allowed one more dose of Zofran between now and midnight.
At this point I went to the toilet and had diarrhoea. The nurses were really good and helped me back to bed as I was also feeling a little lightheaded. They have also put a "hat" over the toilet seat to collect a sample from my next deposit.
Right now the Rabbit ATG is still running and it will be for another 6 hours but I think it is the Cytoxan that is really knocking me around. And the best part is I get to do it all again tomorrow. In all honesty I have always said that I have hoped for the best but prepared for the worst, well mentally anyway. So far the process has not been the best but it has been far from the worst I had expected.
The nurses have been absolutely excellent and extremely diligent about listening to all my complaints and given me all the options associated with them. I believe one of the best things about North Western Hospital is that they don't use any agency nurses like they do in Australia and, although some of the agency nurses are good, there is always a clear difference between the full and part time hospital nurses and the agency nurses.
Right now, I am starting to feel to better. I seem to be going in a cyclical up and down pattern and I think I am heading up at the moment. Thanks to my mother who is diligently typing this post as I dictate her on my hospital bed. Until next time, stay well :)
So I decided to remove the cling wrap around my PICC line as the pre-medications were slowly infused. At this time, my breakfast also arrived which fortunately I managed quite easily. At this point the combination of Benadryl and Ativan had kicked in quite nicely and I slept through until lunchtime. After lunch, which also went down quite easily, I had the pre-meds for the Rabbit ATG, which again made me feel sleepy. Unfortunately, at this point, they also gave me Lasix so, instead of sleeping, I was up every ten minutes to relieve my bladder. During this time I watched a movie called The In-Betweeners. It was very funny but I would not recommend it for children or the morally sensitive.
It was at this point things took a small turn for the worse as I started to get a stomach ache and I felt a little nauseous. Instead of taking more Zofran I decided to take some Composine as I am only allowed one more dose of Zofran between now and midnight.
At this point I went to the toilet and had diarrhoea. The nurses were really good and helped me back to bed as I was also feeling a little lightheaded. They have also put a "hat" over the toilet seat to collect a sample from my next deposit.
Right now the Rabbit ATG is still running and it will be for another 6 hours but I think it is the Cytoxan that is really knocking me around. And the best part is I get to do it all again tomorrow. In all honesty I have always said that I have hoped for the best but prepared for the worst, well mentally anyway. So far the process has not been the best but it has been far from the worst I had expected.
The nurses have been absolutely excellent and extremely diligent about listening to all my complaints and given me all the options associated with them. I believe one of the best things about North Western Hospital is that they don't use any agency nurses like they do in Australia and, although some of the agency nurses are good, there is always a clear difference between the full and part time hospital nurses and the agency nurses.
Right now, I am starting to feel to better. I seem to be going in a cyclical up and down pattern and I think I am heading up at the moment. Thanks to my mother who is diligently typing this post as I dictate her on my hospital bed. Until next time, stay well :)
Friday, April 6, 2012
Day -5
Today was my first day of chemotherapy. In all honesty I really expected it to be similar to what I experienced with the mobilisation and for the most part I was right, but there were a few differences.
First, there were a lot more drugs today. The chemo was supposed to start at 9.00am, which was kind of annoying because I wanted to get my morning routine out of the way before I started, but there were a few snags along the way. There were a number of premeds and they wanted to start them from about 8.00, the same time I had ordered my breakfast.
I really wanted to have my shower before they re-hooked my PICC line to the drugs and fluid which was started at 7.00am and staggered through until 9.00. I was under the impression that these would start about 8.45, but I guess that was my bad as I really should have asked for more clarity and it was no biggy, but I did want to get my morning shower in before I was hooked up to the IV just for the sake of convenience. The other thing that threw the proverbial spanner in the works was that my breakfast was twenty minutes late. It was supposed to come at 8.00am, so by the time it finished it was late. I had to run through the shower to make it back to bed treatment.
Just so you know, at 7.00am they started on the fluids, which will be administered for the next four days until I am finally done with the chemo. They are running it at 150mls per hour. That is 3.6 litres of fluid a day, so as well as the standard fluids I drink ordinarily, that it a lot of fluid. At the same time (7.00am) I also had a dose of dexamethasone, another steroid and mesna. After all the hoopla the pharmacy people here agreed with Dr Goldfarb and concurred that the mesna posed no threat to my cystinuria. Just before 9.00am I rushed out of the shower just in time to get the last couple of premed drugs, zofran for nausea and ativan, a light sedative, which also made me feel a little drowsy.
After about half an hour it hit me again. The dreaded wasabi nose. My nose started twitching, my sinuses started burning and my eyes started watering. So they gave me some benadryl and slowed the rate which the infusion which seemed to do the job. Tomorrow I thing we will engage these tactics prophylactically.
After the cytoxan had run through it was back to the rabbit ATG for another ten hour infusion. It sounds long, but with a permanent infusion of fluids it really doesn't matter. I am here anyway whether I have 100 different things being pumped into me or just one. With the ATG came more premeds. Another 1000mgs of solumedrol, more benadryl and tylenol.
It was a long day. I did have some side effects, mainly the sleep highs and lows due to the Benadryl, ativan and steroids. But there was too some nausea, but I had that one dealt with very quickly with some more zofran. I have had other problems too. The lasix that they give me sends my kidneys into high gear so I'm in a constant state of urination and that leads to pain. With all the many kidney surgeries that I have had I have a great deal of scar tissue inside the good old waste filters. These coupled together are quite painful so I have had to take some Norco too.
I have to say that right now I probably feel slightly worse than I did when I had the mobilisation chemotherapy, but that is probably because of the ATG and Rituxan I have already taken. Oh well, one day down and three to go. And I always said I am not doing this because it is easy, I am doing it because it is worth it. I also couldn't finish my dinner tonight. Alas, the chocolate brownies I ordered for dessert had to be returned to the kitchen uneaten. I hope the chef was not offended.
On a lighter note I have had a couple of extra visitors over the last two days. Aside from my mother who's presence has been sorely welcome, yesterday Abby, the sister of the friend I stayed with in DC came to visit me. It is amazing what the presence of a friend can make. I also have to say that Abby has been really amazing since I have been in Chicago, making sure that I have had people I have felt welcome. In fact I have to sat that everyone in her family and her friends that I have met have been really great and I thank them all for their hospitality.
THe other visitor I had today was Bob Boen. Bob is a fellow CIDPer and another loverly person, I just don't know whether to call him Bob or Robert? WHen I met him for the very first time he was wearing a shirt that said "My friends call me Bob, but you can call me Robert." The question is am I his friend and should I call him Bob? And is the comment related to others? Or does every bodies friend status get demoted when in the presence of the shirt? Maybe I should call him Rob or Bobert;)
Now I have had my little laugh I will go on to say Bob conveys to me the kind of guy that inspires me. He always has a smile on his face, is genuinely interested in talking to anyone and refuses to let his disease beat him. He also gave me my own CIDP jumper that is really kind of him. I will take some pictures of it when I can get the opportunity to.
Well, that is about it for today. If my post today has seemed a little disjointed I apologise. I have 1001 different drugs swimming around in my system and I'm not quite feeling myself. Until next time, stay well:)
First, there were a lot more drugs today. The chemo was supposed to start at 9.00am, which was kind of annoying because I wanted to get my morning routine out of the way before I started, but there were a few snags along the way. There were a number of premeds and they wanted to start them from about 8.00, the same time I had ordered my breakfast.
I really wanted to have my shower before they re-hooked my PICC line to the drugs and fluid which was started at 7.00am and staggered through until 9.00. I was under the impression that these would start about 8.45, but I guess that was my bad as I really should have asked for more clarity and it was no biggy, but I did want to get my morning shower in before I was hooked up to the IV just for the sake of convenience. The other thing that threw the proverbial spanner in the works was that my breakfast was twenty minutes late. It was supposed to come at 8.00am, so by the time it finished it was late. I had to run through the shower to make it back to bed treatment.
Just so you know, at 7.00am they started on the fluids, which will be administered for the next four days until I am finally done with the chemo. They are running it at 150mls per hour. That is 3.6 litres of fluid a day, so as well as the standard fluids I drink ordinarily, that it a lot of fluid. At the same time (7.00am) I also had a dose of dexamethasone, another steroid and mesna. After all the hoopla the pharmacy people here agreed with Dr Goldfarb and concurred that the mesna posed no threat to my cystinuria. Just before 9.00am I rushed out of the shower just in time to get the last couple of premed drugs, zofran for nausea and ativan, a light sedative, which also made me feel a little drowsy.
After about half an hour it hit me again. The dreaded wasabi nose. My nose started twitching, my sinuses started burning and my eyes started watering. So they gave me some benadryl and slowed the rate which the infusion which seemed to do the job. Tomorrow I thing we will engage these tactics prophylactically.
After the cytoxan had run through it was back to the rabbit ATG for another ten hour infusion. It sounds long, but with a permanent infusion of fluids it really doesn't matter. I am here anyway whether I have 100 different things being pumped into me or just one. With the ATG came more premeds. Another 1000mgs of solumedrol, more benadryl and tylenol.
It was a long day. I did have some side effects, mainly the sleep highs and lows due to the Benadryl, ativan and steroids. But there was too some nausea, but I had that one dealt with very quickly with some more zofran. I have had other problems too. The lasix that they give me sends my kidneys into high gear so I'm in a constant state of urination and that leads to pain. With all the many kidney surgeries that I have had I have a great deal of scar tissue inside the good old waste filters. These coupled together are quite painful so I have had to take some Norco too.
I have to say that right now I probably feel slightly worse than I did when I had the mobilisation chemotherapy, but that is probably because of the ATG and Rituxan I have already taken. Oh well, one day down and three to go. And I always said I am not doing this because it is easy, I am doing it because it is worth it. I also couldn't finish my dinner tonight. Alas, the chocolate brownies I ordered for dessert had to be returned to the kitchen uneaten. I hope the chef was not offended.
On a lighter note I have had a couple of extra visitors over the last two days. Aside from my mother who's presence has been sorely welcome, yesterday Abby, the sister of the friend I stayed with in DC came to visit me. It is amazing what the presence of a friend can make. I also have to say that Abby has been really amazing since I have been in Chicago, making sure that I have had people I have felt welcome. In fact I have to sat that everyone in her family and her friends that I have met have been really great and I thank them all for their hospitality.
THe other visitor I had today was Bob Boen. Bob is a fellow CIDPer and another loverly person, I just don't know whether to call him Bob or Robert? WHen I met him for the very first time he was wearing a shirt that said "My friends call me Bob, but you can call me Robert." The question is am I his friend and should I call him Bob? And is the comment related to others? Or does every bodies friend status get demoted when in the presence of the shirt? Maybe I should call him Rob or Bobert;)
Now I have had my little laugh I will go on to say Bob conveys to me the kind of guy that inspires me. He always has a smile on his face, is genuinely interested in talking to anyone and refuses to let his disease beat him. He also gave me my own CIDP jumper that is really kind of him. I will take some pictures of it when I can get the opportunity to.
Well, that is about it for today. If my post today has seemed a little disjointed I apologise. I have 1001 different drugs swimming around in my system and I'm not quite feeling myself. Until next time, stay well:)
A change of pace
Two weeks ago I went to the art institute and walked back through millennium park so I thought I'd show you a few of the pictures I took. There is one Monet and an bunch of Picassos. Also there is a photo of the Silver Bean in Millennium Park and look, the daffodils are out in March! Stay well:)
Thursday, April 5, 2012
Day -6
Day -6 was pretty much the same as day -7. The only difference was the main drug they gave me. Instead of the Rituxan, I was taking the rabbit ATG. So now instead of having my B cells ablated I now have my T cell ablated too. Two letters down, only twenty four left. Well, not quite. Tomorrow I will start the chemo regime for real and that is there to destroy all the white blood cells.
So today was very similar to yesterday. Apart for the main difference that I mentioned above, I had only two smaller difference. First, instead of just having 250mgs of solumedrol, I had 1000mgs. That is an insane amount of steroids to have floating around your system. Oh well I guess I will have to give up my dream of a call up to open the batting for the Australian cricket team as I'm sure that will raise a red flag with any international doping agency around the world. Just so you know, the human body naturally produces 7-10mgs of steroids per day, So I'm only 100 times above normal right now.
The second change is that the Rituxan was run over two hours, the ATG has been run over ten hours so currently, as I started at 2pm I am still having it infused. For any doctors that read this I'm having a hard time figuring out how the drug is derived and its actual mechanism of action. Maybe I'm stupid, maybe (and I hope) it's complicated, so if someone could explain it to me in layman's terms, I'd appreciate it. My cousin is an anaesthesiologist and I have a friend who is a chemist (you know who you are) so I'm sure someone can explain it to me.
Well day -5 should be interesting. I'll let you all know how it goes. Until then, stay well:)
So today was very similar to yesterday. Apart for the main difference that I mentioned above, I had only two smaller difference. First, instead of just having 250mgs of solumedrol, I had 1000mgs. That is an insane amount of steroids to have floating around your system. Oh well I guess I will have to give up my dream of a call up to open the batting for the Australian cricket team as I'm sure that will raise a red flag with any international doping agency around the world. Just so you know, the human body naturally produces 7-10mgs of steroids per day, So I'm only 100 times above normal right now.
The second change is that the Rituxan was run over two hours, the ATG has been run over ten hours so currently, as I started at 2pm I am still having it infused. For any doctors that read this I'm having a hard time figuring out how the drug is derived and its actual mechanism of action. Maybe I'm stupid, maybe (and I hope) it's complicated, so if someone could explain it to me in layman's terms, I'd appreciate it. My cousin is an anaesthesiologist and I have a friend who is a chemist (you know who you are) so I'm sure someone can explain it to me.
Well day -5 should be interesting. I'll let you all know how it goes. Until then, stay well:)
Sleep is over rated
The drugs you are given whilst going through the SCT aren't ever fun, but they are necessary. It seems that they give you a drug to do something and they they give you a drug to counter the side effects of that drug and then they give you a drug to contract the side effects of that drug etc.
What I found was that yesterday they gave me the Rituxan which was the active drug as part of my chemo arrangement. But just in case they gave me a large dose of Solumedrol, a steroid, some tylenol (paracetamol) and benedryl.
What I find is the benedryl makes me really sleepy so just after they have administered that I normally sleep anywhere from two to four hours. After then the sleepy effect of the benedryl has worn off the effects of the steroids kick in and from that point on I can't sleep. Yesterday I was not tired and I tried to sleep at about 10.00pm but to no avail.
Luckily Amy had written me up a sleeping pill so at about midnight I took that and then about 1.00am I finally got to sleep and I woke up around 7.00am with a brief interruption around 5.00am when the nurse came in to check my vitals (and yes I did have a heart beat) and to my surprise I did sleep afterwards.
The thing I find is that hospitals are boring at the best of times. They are even more boring when you're stuck in a cycle of sleeplessness at 2 o'clock in the morning. If I can't get to sleep in about 15 minutes, I will busy myself with a DVD or book or something for an hour or two. If I still can't sleep I'll ask the nurse if I can have something and if I still can't sleep I'll continue to occupy myself with a DVD or something.
The night before my brain surgery I couldn't sleep, probably because of the anxiety after not one but two sleep pills I still couldn't sleep until about 4.00am! They then woke me at 6.00am to prep me for surgery. Sometimes it doesn't matter what you do, yo just can't sleep. Until next time, stay well:)
What I found was that yesterday they gave me the Rituxan which was the active drug as part of my chemo arrangement. But just in case they gave me a large dose of Solumedrol, a steroid, some tylenol (paracetamol) and benedryl.
What I find is the benedryl makes me really sleepy so just after they have administered that I normally sleep anywhere from two to four hours. After then the sleepy effect of the benedryl has worn off the effects of the steroids kick in and from that point on I can't sleep. Yesterday I was not tired and I tried to sleep at about 10.00pm but to no avail.
Luckily Amy had written me up a sleeping pill so at about midnight I took that and then about 1.00am I finally got to sleep and I woke up around 7.00am with a brief interruption around 5.00am when the nurse came in to check my vitals (and yes I did have a heart beat) and to my surprise I did sleep afterwards.
The thing I find is that hospitals are boring at the best of times. They are even more boring when you're stuck in a cycle of sleeplessness at 2 o'clock in the morning. If I can't get to sleep in about 15 minutes, I will busy myself with a DVD or book or something for an hour or two. If I still can't sleep I'll ask the nurse if I can have something and if I still can't sleep I'll continue to occupy myself with a DVD or something.
The night before my brain surgery I couldn't sleep, probably because of the anxiety after not one but two sleep pills I still couldn't sleep until about 4.00am! They then woke me at 6.00am to prep me for surgery. Sometimes it doesn't matter what you do, yo just can't sleep. Until next time, stay well:)
Chemo Bald
I don't mind being bald. I am in good company:)
So now, don't make fun of me or Vin Diesel will kick your ass! Stay well:)
Wednesday, April 4, 2012
Day -7
You know, when I come to hospital I like to hope for the best but expect the worst. So for the last 24 hours I have been trying to stay positive but at the same time I have been trying to steel my mind for any nasty surprises. Fortunately, so far it has been a breeze but it is only my first day and I'm sure that things will get harder as time goes by.
So why was today easier than expected? Well to start with the PICC line catheter was 100 times more comfortable than the central line catheter that I had for the harvest. This will hopefully be a benefit that will remain for the whole two and a half weeks, and I must admit that I can't see any reason why this wouldn't be the case.
The second reason is that I didn't actually start the chemo today. The protocol changes slightly for every patient, but I am not actually going to do any chemo until Thursday or day -5. Today all I had was a dose of rituxan. Rituxan is used to target B cells which are one of the five types of white blood cells or lymphocytes in the blood. They didn't expect any side effects, and none were realised. Well no side effects anyway, but I do think I am out of the woods now. Tomorrow, there is no chemo again and no Rituxan either. Instead I will have rabbit ATG, which is used to target the T cells, another lymphocyte, in a similar way to how Rituxan attacks the B cells.
Another plus is I have a much better room than I had for mobilisation. The best rooms with nicest view are east facing over the lake. My room is north facing, but is probably the second best view and I have two big windows as opposed to one small window. However, the room is slightly smaller, but this doesn't bother me at all. I will get some video for you tomorrow. Until then, stay well:)
So why was today easier than expected? Well to start with the PICC line catheter was 100 times more comfortable than the central line catheter that I had for the harvest. This will hopefully be a benefit that will remain for the whole two and a half weeks, and I must admit that I can't see any reason why this wouldn't be the case.
The second reason is that I didn't actually start the chemo today. The protocol changes slightly for every patient, but I am not actually going to do any chemo until Thursday or day -5. Today all I had was a dose of rituxan. Rituxan is used to target B cells which are one of the five types of white blood cells or lymphocytes in the blood. They didn't expect any side effects, and none were realised. Well no side effects anyway, but I do think I am out of the woods now. Tomorrow, there is no chemo again and no Rituxan either. Instead I will have rabbit ATG, which is used to target the T cells, another lymphocyte, in a similar way to how Rituxan attacks the B cells.
Another plus is I have a much better room than I had for mobilisation. The best rooms with nicest view are east facing over the lake. My room is north facing, but is probably the second best view and I have two big windows as opposed to one small window. However, the room is slightly smaller, but this doesn't bother me at all. I will get some video for you tomorrow. Until then, stay well:)
Tuesday, April 3, 2012
Udvar-Hazy
Arguably you could say that this is the other half of the Air and Space Museum. It has a bucket load of all things aeronautic and astronautic so I was in heaven. THe main difference between this campus and the one in DC is that this one was mainly just showing off the aircraft. The DC campus had more interactive displays and was concerned with more than just aircraft. For example, they had an exhibit dedicated to astronomy.
I had to say that in the morning I wasn't planning on going. Even though I wanted to go my friend did not share my passion so I thought it fair that we go somewhere we would both enjoy. However, her husband also really wanted to go so I put my less selfish side aside and decided to head off to Dulles Airport which was a great decision as Mr Ronald "Reagan" Sigworth was a former senior engineer for Pratt and Whitney so I had my own resident expert of aeroplane engines. You can all share in his wisdom as he gave a little speech on the SR71. Here is the video, please enjoy. Stay well:)
I had to say that in the morning I wasn't planning on going. Even though I wanted to go my friend did not share my passion so I thought it fair that we go somewhere we would both enjoy. However, her husband also really wanted to go so I put my less selfish side aside and decided to head off to Dulles Airport which was a great decision as Mr Ronald "Reagan" Sigworth was a former senior engineer for Pratt and Whitney so I had my own resident expert of aeroplane engines. You can all share in his wisdom as he gave a little speech on the SR71. Here is the video, please enjoy. Stay well:)
DC
As I told you this morning, and as you probably figured from the video I took at the air and space museum, I have been in Washington DC for the last three days. I went there and stayed with a dear friend and her family and we had a great time. It was great to get away. Being away from Chicago and in the company of friends was extremely refreshing. I was able to forget about the stresses of the medical trial and take some time to see some really cool stuff while I was there.
The first day I awoke late in the English basement because the bed was so comfortable and the lack of windows kept the room super dark, the two vital ingredients for waking up late. I won't bore you with chronicling my trip to the Air and Space museum so I will just move on to day two.
Again I woke late, and by the time we had all got ourselves ready and my friend had got her two kids ready, our breakfast outing had turned from brunch and finally into lunch. Since through genuine procrastination and laziness on my part it was time to go see some stuff. And wow, is there some stuff to see! DC has the best museums in the world, and also the best monuments too.
That day I decided it was time to see the monuments. When I was in DC 10 years ago with my wife we saw the Vietnam and Korean memorials, Roosevelt and Lincoln memorials, the Washington monument and Arlington cemetery. So we started at the WWII memorial. Amazingly enough, they only built it two years ago and was constructed due to the dedication of Bob Dole and Tom Hanks who were ashamed that Washington did not have a memorial for the fallen of WWII.
Personally, even as a half Australian half Brit, I was genuinely moved by the memorial. My grandfather fought in the war in the Pacific and for much of that he was fighting alongside Americans. He was the first Australian to win the Distinguished Flying Cross so I have to say I was genuinely moved by the memorial. Here are some pictures I took:-
After the WWII memorial we went to the Jefferson memorial, which was huge. I have to say, I'm not American so maybe I don't understand, but the Jefferson memorial is bigger than the WWI, WWII, Vietnam and Korean memorials put together. I understand that Jefferson was instrumental in building the foundations of the USA, but is his life worth more than the thousands that died for their country? Honestly, I cannot answer that question as I'm not American, but it is merely a discussion point.
I will, talk about the Udvar Hazy Air and Space Museum tomorrow. Until next time, stay well:)
The first day I awoke late in the English basement because the bed was so comfortable and the lack of windows kept the room super dark, the two vital ingredients for waking up late. I won't bore you with chronicling my trip to the Air and Space museum so I will just move on to day two.
Again I woke late, and by the time we had all got ourselves ready and my friend had got her two kids ready, our breakfast outing had turned from brunch and finally into lunch. Since through genuine procrastination and laziness on my part it was time to go see some stuff. And wow, is there some stuff to see! DC has the best museums in the world, and also the best monuments too.
That day I decided it was time to see the monuments. When I was in DC 10 years ago with my wife we saw the Vietnam and Korean memorials, Roosevelt and Lincoln memorials, the Washington monument and Arlington cemetery. So we started at the WWII memorial. Amazingly enough, they only built it two years ago and was constructed due to the dedication of Bob Dole and Tom Hanks who were ashamed that Washington did not have a memorial for the fallen of WWII.
Personally, even as a half Australian half Brit, I was genuinely moved by the memorial. My grandfather fought in the war in the Pacific and for much of that he was fighting alongside Americans. He was the first Australian to win the Distinguished Flying Cross so I have to say I was genuinely moved by the memorial. Here are some pictures I took:-
 |
| The Front |
 |
| The fountain |
 |
| All 50 states are represented by pillars like this. I took a picture of Illinois as this is where I have spent most of my time. |
 |
| Something for the overseas allies |
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| I took a picture of Kansas as the friend I was staying with was originally from there. |
I will, talk about the Udvar Hazy Air and Space Museum tomorrow. Until next time, stay well:)
Countdown
In just over three hours I'll be headed off to the hospital to for my PICC line placement. It is funny how quickly it comes around. It only seems like the other day I was sitting in the blood centre, watching Ferris Beuler and having my stem cells harvested. It has been over two weeks since then and now I am on the eve of my first day chemotherapy and only eight days away from my transplant.
I am excited about it because this is the first time I have really been in a position where I can reverse the progression of this ugly disease. I am also dreading it because four days of chemotherapy and a huge cocktail of other drugs I am sure that I will feel awful. Lastly, I am worried. Not so much worried that something will go wrong. I actually feel very strong and very well prepared so I don't think anything will go wrong. I am worried it will not work and I have put myself through this whole ordeal, removing myself from my family for two months and risking my life for nothing.
Hopefully the PICC line placement will be more comfortable than the central line catheter placement, but it will be what it will be. Right now I need to get an hours sleep as I just flew back from DC after spending a wonderful weekend in the capital with an old friend and her family. But I will tell you about that later. Until then, stay well:)
I am excited about it because this is the first time I have really been in a position where I can reverse the progression of this ugly disease. I am also dreading it because four days of chemotherapy and a huge cocktail of other drugs I am sure that I will feel awful. Lastly, I am worried. Not so much worried that something will go wrong. I actually feel very strong and very well prepared so I don't think anything will go wrong. I am worried it will not work and I have put myself through this whole ordeal, removing myself from my family for two months and risking my life for nothing.
Hopefully the PICC line placement will be more comfortable than the central line catheter placement, but it will be what it will be. Right now I need to get an hours sleep as I just flew back from DC after spending a wonderful weekend in the capital with an old friend and her family. But I will tell you about that later. Until then, stay well:)
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