On Tuesday I had my central line put in. The clinic was running behind as they were dealing with an emergency case that had just come in, so we were delayed 4.5 hours. It was frustrating, but also comforting to know that if I had an emergency, they would drop everything to help me too.
The procedure is not complicated and is performed by a radiologist. He checks with ultrasound to find a good spot on your jugular vein in your neck and then freezes you up across your collar bone. The line goes into the jugular and is threaded down into your heart and then the other end is tunnelled under your skin across your collarbone and out by your shoulder. Two tubes come out of it and they used them to take blood and to administer medications yesterday. They will use them to filter my blood during harvest of stem cells on May 5th.
It was pretty sore once the freezing came out, but it is much better now. I keep making it bleed at the exit site because I am doing too much...but I am stubborn and insisted on doing laundry on Thursday! If I feel I can I will do it! Don't worry, my mom is coming later this morning and she will lay down the law!
Gotta go...gotta drink my cat pee now. (See previous blog post for details.)
Saturday, 26 April 2014
Cat pee on a cranberry bush :)
Here I am up at 3:40 to take an anti-nausea drug 20 minutes before I have to take another drug that protects my bladder from the effects of the high dose chemo I had yesterday. It was given intravenously yesterday and I had to drink it at 10:00 last night and again at 4:00 this morning. It tastes vile. It smells like cat urine. Seriously! I can only imagine it tastes like it too! I can mix it with another liquid to try to mask the taste, but it is more than one gulp already...so you don't really want to make it a 3 gulper...I used cranberry-grape juice the first time...I think I am going with the pure organic cranberry juice this time. Very tart but hopefully it will make the taste better.
Bottoms up!
Wednesday, 16 April 2014
An aside about Al
This isn't really about me, but I wanted to write about it.
One year ago yesterday my husband had a heart attack and cardiac arrest. He is fine now, but we learned a number of lessons that I think should be shared.
First, Al had some symptoms that he tried to ignore. A heart attack can present itself in many different ways...it is not always a crushing pain in the chest. He felt like he had a pulled muscle. He had been doing some heavy lifting the day before and attributed it to that initially.
Once he realized that the discomfort wasn't going away, he decided to drive himself to the hospital. He expected that if it was indeed a heart attack he would have time from when it got "bad" to pull over and call 911 if necessary. This was a bad idea...and he realized later how quickly things can turn bad. He could have crashed his truck and injured a lot more people in the process.
When he left work, he did not tell them the full truth about why or where he was heading. He said he did not feel well and was going home. He did not want a fuss to be made or for someone to call 911 and take him out on an ambulance stretcher. In retrospect, you should go for that option rather than risk dying in your office and being found too late. I know that sounds morbid, but I need to get my point across with impact.
At least he called me when he was on his way and told me what was happening. I met him in emergency and the doctor confirmed that he was having a heart attack. He was not in a lot of pain and was not making a fuss, so the doc and the nurse both left him alone while they went to arrange an ambulance transfer to Hamilton's Cardiac Investigation Unit. I was with him and we were chatting when he suddenly felt quite ill. He told me he did not feel well and he remembers telling me "Oh, this is not good" just before everything went dark. He had a cardiac arrest.
During a heart attack, you usually remain awake and aware of what is happening around you. Cardiac arrest however, means that your heart has stopped. STOPPED. Flat-line. DEAD.
He immediately turned grey. I waited a bit for the nurse or doctor to show up. Afterall, he was on a monitor and they knew he was having a heart attack...they should be right there...right? No-one came. I called out for a doctor or nurse. No-one came. I called for HELP!! No-one came. I ran down to the monitoring station. There was no-one there. I called out for a doctor or nurse. There was no-one. I ran back to Al and he had not magically revived himself. I was panicked. I knew there were only a few minutes before the point of no return. I do not know CPR and could not have done it anyway since I was recovering from surgery on both elbows. I decided to go into the main hospital to find some help. I found a paramedic and grabbed his arm and asked him to help me. (Probably more like I dragged him with me and told him he had to help me.) He saw the situation and immediately hit the code blue button, dropped the bed down, and started CPR.
The lesson here is that you cannot leave your loved one alone. You cannot assume that because you are in a hospital that medical staff will be there to respond when needed. The patient needs an advocate by their side. Blame it on budget cuts or apathetic staff...or whatever...it happens. The nursing staff cannot be everywhere at once. If I had not been by his side and found someone to help, Al would not be here right now. As it was, a lot of time had passed before he was breathing again...and I was right there went it happened.
This also relates back to the issue of driving yourself to the hospital. It was a split second that Al went from chatting to dying. If he was driving when this happened, there would be no chance for him and he might have taken out others in the process. Don't drive yourself to the hospital!!
Another lesson...when you enter a hospital room or cubical...look for the call button and the code blue button. This way, you know where they are if you need to find them in an emergency. Otherwise you are too panicked to think clearly and see them.
After a few minutes of CPR they used the defibrillator and brought him back. He felt like he had a few seconds of a "nap" and was surprised at all the commotion at his bedside. He was taken to Hamilton and they placed a stent in the one blocked artery. He has been great ever since!
The big lesson here is that you should not take anything, or anyone, for granted. Life, as you know it, can change drastically within seconds. Live life to the fullest everyday and be grateful for all the blessings in your life. I know I am.
One year ago yesterday my husband had a heart attack and cardiac arrest. He is fine now, but we learned a number of lessons that I think should be shared.
First, Al had some symptoms that he tried to ignore. A heart attack can present itself in many different ways...it is not always a crushing pain in the chest. He felt like he had a pulled muscle. He had been doing some heavy lifting the day before and attributed it to that initially.
Once he realized that the discomfort wasn't going away, he decided to drive himself to the hospital. He expected that if it was indeed a heart attack he would have time from when it got "bad" to pull over and call 911 if necessary. This was a bad idea...and he realized later how quickly things can turn bad. He could have crashed his truck and injured a lot more people in the process.
When he left work, he did not tell them the full truth about why or where he was heading. He said he did not feel well and was going home. He did not want a fuss to be made or for someone to call 911 and take him out on an ambulance stretcher. In retrospect, you should go for that option rather than risk dying in your office and being found too late. I know that sounds morbid, but I need to get my point across with impact.
At least he called me when he was on his way and told me what was happening. I met him in emergency and the doctor confirmed that he was having a heart attack. He was not in a lot of pain and was not making a fuss, so the doc and the nurse both left him alone while they went to arrange an ambulance transfer to Hamilton's Cardiac Investigation Unit. I was with him and we were chatting when he suddenly felt quite ill. He told me he did not feel well and he remembers telling me "Oh, this is not good" just before everything went dark. He had a cardiac arrest.
During a heart attack, you usually remain awake and aware of what is happening around you. Cardiac arrest however, means that your heart has stopped. STOPPED. Flat-line. DEAD.
He immediately turned grey. I waited a bit for the nurse or doctor to show up. Afterall, he was on a monitor and they knew he was having a heart attack...they should be right there...right? No-one came. I called out for a doctor or nurse. No-one came. I called for HELP!! No-one came. I ran down to the monitoring station. There was no-one there. I called out for a doctor or nurse. There was no-one. I ran back to Al and he had not magically revived himself. I was panicked. I knew there were only a few minutes before the point of no return. I do not know CPR and could not have done it anyway since I was recovering from surgery on both elbows. I decided to go into the main hospital to find some help. I found a paramedic and grabbed his arm and asked him to help me. (Probably more like I dragged him with me and told him he had to help me.) He saw the situation and immediately hit the code blue button, dropped the bed down, and started CPR.
The lesson here is that you cannot leave your loved one alone. You cannot assume that because you are in a hospital that medical staff will be there to respond when needed. The patient needs an advocate by their side. Blame it on budget cuts or apathetic staff...or whatever...it happens. The nursing staff cannot be everywhere at once. If I had not been by his side and found someone to help, Al would not be here right now. As it was, a lot of time had passed before he was breathing again...and I was right there went it happened.
This also relates back to the issue of driving yourself to the hospital. It was a split second that Al went from chatting to dying. If he was driving when this happened, there would be no chance for him and he might have taken out others in the process. Don't drive yourself to the hospital!!
Another lesson...when you enter a hospital room or cubical...look for the call button and the code blue button. This way, you know where they are if you need to find them in an emergency. Otherwise you are too panicked to think clearly and see them.
After a few minutes of CPR they used the defibrillator and brought him back. He felt like he had a few seconds of a "nap" and was surprised at all the commotion at his bedside. He was taken to Hamilton and they placed a stent in the one blocked artery. He has been great ever since!
The big lesson here is that you should not take anything, or anyone, for granted. Life, as you know it, can change drastically within seconds. Live life to the fullest everyday and be grateful for all the blessings in your life. I know I am.
Prep Work
Al and I attended the "Family Meeting" at Juravinski Cancer Centre yesterday. This is a mandatory meeting with the doctor and the Stem Cell Transplant Coordinator. There were no surprises for me, but I am well read on the topic. The coordinator was pleased with the level of understanding that Al and I had, and I can only imagine how difficult this session is with some folks.
The doctor is very pleased with the level of response I have shown during induction chemo and is confident that I will respond well to the transplant. My blood work looked good and the ultrasound of my heart showed that everything is normal. (No hard, cold, piece of coal, Al!)
The coordinator went over the procedures that I will be subjected to over the next few weeks and then the transplant procedure in detail. We talked about risks and what to expect during recovery. It is not going to be an easy ride, but I bought a ticket anyway. :)
My next procedure is next Tuesday, and it will be to insert the central line catheter into my chest. A nurse will come the next day to change the dressing and then will do so once a week after that. The nurse will teach me to flush the line myself and this is required daily. The line will remain in place for about 2 months. (I told the doc that it better be out in time for me to enjoy the pool!!)
On Friday (the 25th) I have a full day at the hospital. I will be given IV fluids then about 2 hours of high dose chemo, and then fluids for the remainder of the day. The cychlophosphamide chemo is the one my doctor took me off early due to bladder irritation. Now I will have a high dose, so not only will I get lots of hydration that day to flush the bladder, but I will have a nurse for the following 2 days at home to provide extra fluids through IV. They compared it to the flushing of the radiator in your car. LOL! I had the option of foregoing the chemo altogether due to the risk of a recurrence of the bladder irritation, but I did not want to cut any corners and want the best possible outcome, so if it means I have cystitis again for a week or so, so be it!
The Neupogen shots begin on that Saturday as well. 10 days of shots...not into my IV line unfortunately...and apparently they burn. I am pretty used to this as the Velcade was much the same, but that was once a week. I get this one every day for 10 days. Apparently, around day 7, I will be in a significant amount of discomfort as my bones become engorged with all the extra stem cells. Once they are released into my blood stream I will feel better (about 24 hours later). I have a prescription for some heavy duty pain killers so I expect this will be no walk in the park. :(
On Monday, May 5, I spend the day at the hospital for harvest. If they get enough stem cells that day, I don't have to go back the next day for another harvest. The harvest is a painless process during which they route my blood through a machine that separates out the cells that they need for my transplant. They freeze my stem cells and store them until I need them back.
I also found out that Juravinski does not have free WIFI...(St. Catharines does)...so I am not pleased. LOL. I need to remain connected so I will have to look at some options. 2-3 weeks is a long time to be without internet connectivity!! :)
I will post more on the transplant procedure later. This is enough technical medical info for you in one shot. :)
The doctor is very pleased with the level of response I have shown during induction chemo and is confident that I will respond well to the transplant. My blood work looked good and the ultrasound of my heart showed that everything is normal. (No hard, cold, piece of coal, Al!)
The coordinator went over the procedures that I will be subjected to over the next few weeks and then the transplant procedure in detail. We talked about risks and what to expect during recovery. It is not going to be an easy ride, but I bought a ticket anyway. :)
My next procedure is next Tuesday, and it will be to insert the central line catheter into my chest. A nurse will come the next day to change the dressing and then will do so once a week after that. The nurse will teach me to flush the line myself and this is required daily. The line will remain in place for about 2 months. (I told the doc that it better be out in time for me to enjoy the pool!!)
On Friday (the 25th) I have a full day at the hospital. I will be given IV fluids then about 2 hours of high dose chemo, and then fluids for the remainder of the day. The cychlophosphamide chemo is the one my doctor took me off early due to bladder irritation. Now I will have a high dose, so not only will I get lots of hydration that day to flush the bladder, but I will have a nurse for the following 2 days at home to provide extra fluids through IV. They compared it to the flushing of the radiator in your car. LOL! I had the option of foregoing the chemo altogether due to the risk of a recurrence of the bladder irritation, but I did not want to cut any corners and want the best possible outcome, so if it means I have cystitis again for a week or so, so be it!
The Neupogen shots begin on that Saturday as well. 10 days of shots...not into my IV line unfortunately...and apparently they burn. I am pretty used to this as the Velcade was much the same, but that was once a week. I get this one every day for 10 days. Apparently, around day 7, I will be in a significant amount of discomfort as my bones become engorged with all the extra stem cells. Once they are released into my blood stream I will feel better (about 24 hours later). I have a prescription for some heavy duty pain killers so I expect this will be no walk in the park. :(
On Monday, May 5, I spend the day at the hospital for harvest. If they get enough stem cells that day, I don't have to go back the next day for another harvest. The harvest is a painless process during which they route my blood through a machine that separates out the cells that they need for my transplant. They freeze my stem cells and store them until I need them back.
I also found out that Juravinski does not have free WIFI...(St. Catharines does)...so I am not pleased. LOL. I need to remain connected so I will have to look at some options. 2-3 weeks is a long time to be without internet connectivity!! :)
I will post more on the transplant procedure later. This is enough technical medical info for you in one shot. :)
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