Ok, so maybe I've been in a little denial. This happened with my last bout but it took a little longer to happen. Here is what I mean. I was diagnosised, I had surgery, I had test and everything said the cancer was gone. I then began treatment to "prevent" the cancer from returning or to catch it as soon as possible when it did return. But, in my mind, it was hard for me to wrap my head around the fact that I was "sick" or "fighting my disease" because, in my mind, I was cancer "free". That all changed after this last infusion.
I went up for my fourth infusion and last of the first quarter. I have been getting infusions every three weeks for the last three months. After this infusion, I will get infusions once every three months. Nicole and I went up early to get the labs done so that they would not hold us up for the treatment (we have learned that labs ALWAYS hold us up in starting infusion.) For the first time, the nurse was able to start the IV and draw the blood really quick with no problems. Nicole was surprised how quickly I was in and out of the lab.
Nicole and I then went and had a really nice lunch at The Bistro on the 6th floor of HCI. Everything was going really well. We went back down to check in for the doctor's appointment after eating lunch. We were able to get in quickly to see the doctor. The nurse for my last infusion was Karen. Karen told us at that time that she was going to be Dr. Grossman's new nurse. It was nice to see her there during the appointment.
I was still a little upset with Dr. Grossman over what happened with him during my last visit. I was really tempted to tell him everything was fine just to get in and out of the appointment. I also was relucant because, since that last visit, my shoulder was still bothering me and Nicole was able to get me into Physical Therapy for my shoulder. I had been twice (once the morning of this infusion treatment) and had only received stretching for my shoulder. I was relucant to tell Dr. Grossman. We told Dr. Grossman and he was perfectly ok with what we were doing. This visit changed my attitude back to believing Dr. Grossman was concerned about my overall well being.
After Dr. Grossman's visit, I went down and checked in for the infusion. During our last visit, we learned Chris was no longer working at HCI and Andrea was filling in as the Clinical Coordinator until a new person was hired. Andrea, during this visit, said that because we would not be back for three months, it was possible the new person would be hired and in place. She wanted us to be aware that we might see a new person on that next visit so we were not "surprised" again. We also met Andrea's supervisor, Annik, who gave us her information as well so we could contact her if we had any questions.
When I went in to get labs, Nicole and I were doing every possible to make sure all the labs were taken so we did not get held up. I realized, just before they started, that I did not see the tubes that were usually with the paperwork for the trial itself. Normally there are four tubes in a bag that are taken and given to the clinical coordinator to be used by the trial. I ran out and told Nicole to ask Andrea about them. Nicole came in after talking to Andrea and said we did not need those on this visit. What!? Well, right before infusion, Andrea walked down with four tubes in her hand and said she had made a mistake and they did need the four tubes. I laughed. Luckily, these tubes don't need to be checked prior to being able to start infusion. It really did not slow the process down but it was funny.
I was called back for infusion. The nurse introduced himself (Gary was his name) and told me he was new in the infusion center. Gary said that another nurse would be assisting him. I could tell Gary was new because things just didn't run as smooth as normal. We only waited about 30 minutes (it is usually much longer) for the medicine to be mixed and then we started infusion. Everything was going just like all the others. We had 90 minutes for infusion, with vital checks every thirty minutes. No problems.
The infusion was completed and, as usual, they "flushed" the medicine. They do this my taking a large syringe containing what I believe is simply saline, and they inject it into the IV bag. The fluid drains like usual and all the medicine is cleared from the bag and tube. They do this as part of the hour I have to wait and have my vitals checked. Shortly after the "flush" began, I noticed something had changed. My chest began to tighten and it felt like I could not take a deep breath. I didn't say anything at first. I thought maybe it was just me. I then began looking at the IV. I checked it several times. I even looked at the syringe to make sure it was only saline. It felt as though maybe I had received something different than saline. I finally leaned over to Nicole and told her what was going on. Nicole said I needed to tell the nurse. I asked her if she wanted me to stand up and walk over or yell real loud. Nicole got the point and walked over and told Gary. Nicole then looked at my chest after telling the nurse. Nicole said the upper part of my chest was bright red, almost looked like I had a sunburn on my chest.
Gary, being new, walked over and looked at the IV. I could tell Gary was not sure exactly what to do. Luckily I did not feel like I was in jeopardy. I knew I could breath but I just couldn't take a deep breath. Gary walked over the desk and told one of the other nurses what was going on. Suddenly, four nurses ran to where I was sitting. They unhooked me from the IV and began hooking me up to take my vitals. I was then given oxygen as well. I was told that Dr. Grossman was contacted and was on his way. When Dr. Grossman arrived, he spoke with me for a moment. A new IV of saline had been hooked up and was being infused. Dr. Grossman said it sounded like a reaction to the medicine so he had them give me benadryl through my IV.
Benadryl and I don't get along! Instead of calming me down and making me sleepy, it makes me "wired". I feel like I want to crawl out of my skin. After the benadryl was given, my injection site and bicep on that arm started to burn. Nicole said it was the benadryl. The nurses and doctor were monitoring my vitals and listening to heart and lungs. The benadryl kicked in and now I was very "fuzzy", sleepy, and get irritated by the medicine. Dr. Grossman then told me that, though he thought it was a reaction to the medicine, they needed to rule out that it was not heart related. Dr. Grossman said that meant I would be taken to the ER at U of U Hospital. Dr. Grossman said it may include having to stay overnight for monitoring. I was beginning to get a little worried!!! A tech showed up and took an EKG. It was really quick but removing the stick on leads was painful.
Shortly after this, Nicole walked out for a minute to start notifying family of what was going on. I overheard the nurses say that Airmed was on the way to take me to the hospital. This was a little bit funny because I was like 100 yards from U of U Hospital. What I learned was that the Airmed team was coming over and would take me on a short ambulance ride to the hospital. When I told Nicole Airmed was enroute, she did not believe me. Then they showed up!!! They began hooking me up to their machines to transport me to the hospital. I could also tell that others in the infusion center were asking questions about what happened. My "situation" was causing quite a "ruckus" in the infusion center.
I was transferred to a gurney and rapidly, I didn't know they could move that fast, taken out of HCI and then into the ambulance, and into the ER. They kept asking me if I was feeling any better or if the symptoms werw still present. The problem was I was so messed up by the benadryl, I really had to concentrate on whether I was still having problems taking a breath!! The breathing issue continued all the way to the ER. Shortly after arriving at the ER, the ER doctor, Dr. Holly, asked if the symptoms were still present. I noticed that the tightness was now gone!!! My only real problem regarding being comfortable was the fact that I really needed to go to the bathroom!!! I did not want to have a catheter inserted, and I did not want to use a plastic urinal. I wanted to walk to the bathroom and GO!!! Nicole was able to get the nurse to agree to let me use the bathroom. Once I was finished, I felt much better. Now I was just aggravated by the benadryl.
The Airmed nurses had stuck pads on my shoulders and sides to hook up the monitors. Luckily then put them where I did not have any hair. That was great until they wanted another EKG. They must stick on twenty of those pads and, of course, it is right on whatever hair may be there!!! They also took a chest xray. Dr. Holly said that they needed to be sure there was nothing wrong with my heart and that because I had cancer, they needed to make sure I did not have a blood clot causing the problem. They checked some labs and looked at the EKG and xray and determined that everything seemed fine with my heart and it was doubtful it was a blood clot. The consensus was the breathing issue was a result of the reaction from the medicine. Phew!!! I was also released from the ER and was able to go home without having to stay overnight.
Nicole and I drove home, stopping to get something to eat on the way. I was really getting bothered by the benadryl. I was aggravated and sleepy, but could not simply lay down and sleep because of the way the benadryl made me feel.
Nicole was able to get a hold of Yolanda, one of the officers at work. I did not have my phone with me with the phone numbers in it but luckily Nicole had Yolanda's number. We told Yolanda what was going on. She said she would call my Captain, Bob, and let him know I was not coming in on Thursday.
After getting home, I went straight to bed and fell asleep. Nicole said I slept like a rock. I told Nicole that it felt like a slept on a rock. I woke up feeling like I had a cold. I was congested, coughing, and it felt like my lungs were full of "junk". Nicole, who had gone to work, called me and told me to just stay downstairs and rest. Nicole had Mariah bring down a humidifier. Nicole was able to speak to Karen who told Nicole to have me take some Xantac or Pepcid. Karen said it would also help with the breathing difficulty. I took the medicine but it did not seem to help.
Thursday, late afternoon, I had a doctor's appointment with a new doctor, Dr. Nobahara. Nicole had decided weeks earlier that I needed an internal medicine doctor instead of just a family practice doctor. We saw Dr. Nobahara and filled him with everything that was going on. Dr. Nobahara did an exam and told me that he also felt it was a reaction to the medicine.
It was during the day Thursday that it hit me. I had been on cruise control and in denial. It finally hit me that I indeed was sick and that I indeed was in a "fight" for my life and against cancer. Though I had chosen not to do regular chemotherapy, I was now experiencing side effects from the medicine. This was good and bad news. The bad news was that I was now getting a taste of what it was like to get "sick" from chemo treatment. The good news was that I most likely was getting the medicine. I would not have had a reaction to the placebo. The medicine, which has had great results with fighting melanoma tumors, was most likely being given to me. I was most likely getting observation along with the medicine that could make a tremendous different with my overall outcome and assist me in winning this "fight" with cancer.
I went up for my fourth infusion and last of the first quarter. I have been getting infusions every three weeks for the last three months. After this infusion, I will get infusions once every three months. Nicole and I went up early to get the labs done so that they would not hold us up for the treatment (we have learned that labs ALWAYS hold us up in starting infusion.) For the first time, the nurse was able to start the IV and draw the blood really quick with no problems. Nicole was surprised how quickly I was in and out of the lab.
Nicole and I then went and had a really nice lunch at The Bistro on the 6th floor of HCI. Everything was going really well. We went back down to check in for the doctor's appointment after eating lunch. We were able to get in quickly to see the doctor. The nurse for my last infusion was Karen. Karen told us at that time that she was going to be Dr. Grossman's new nurse. It was nice to see her there during the appointment.
I was still a little upset with Dr. Grossman over what happened with him during my last visit. I was really tempted to tell him everything was fine just to get in and out of the appointment. I also was relucant because, since that last visit, my shoulder was still bothering me and Nicole was able to get me into Physical Therapy for my shoulder. I had been twice (once the morning of this infusion treatment) and had only received stretching for my shoulder. I was relucant to tell Dr. Grossman. We told Dr. Grossman and he was perfectly ok with what we were doing. This visit changed my attitude back to believing Dr. Grossman was concerned about my overall well being.
After Dr. Grossman's visit, I went down and checked in for the infusion. During our last visit, we learned Chris was no longer working at HCI and Andrea was filling in as the Clinical Coordinator until a new person was hired. Andrea, during this visit, said that because we would not be back for three months, it was possible the new person would be hired and in place. She wanted us to be aware that we might see a new person on that next visit so we were not "surprised" again. We also met Andrea's supervisor, Annik, who gave us her information as well so we could contact her if we had any questions.
When I went in to get labs, Nicole and I were doing every possible to make sure all the labs were taken so we did not get held up. I realized, just before they started, that I did not see the tubes that were usually with the paperwork for the trial itself. Normally there are four tubes in a bag that are taken and given to the clinical coordinator to be used by the trial. I ran out and told Nicole to ask Andrea about them. Nicole came in after talking to Andrea and said we did not need those on this visit. What!? Well, right before infusion, Andrea walked down with four tubes in her hand and said she had made a mistake and they did need the four tubes. I laughed. Luckily, these tubes don't need to be checked prior to being able to start infusion. It really did not slow the process down but it was funny.
I was called back for infusion. The nurse introduced himself (Gary was his name) and told me he was new in the infusion center. Gary said that another nurse would be assisting him. I could tell Gary was new because things just didn't run as smooth as normal. We only waited about 30 minutes (it is usually much longer) for the medicine to be mixed and then we started infusion. Everything was going just like all the others. We had 90 minutes for infusion, with vital checks every thirty minutes. No problems.
The infusion was completed and, as usual, they "flushed" the medicine. They do this my taking a large syringe containing what I believe is simply saline, and they inject it into the IV bag. The fluid drains like usual and all the medicine is cleared from the bag and tube. They do this as part of the hour I have to wait and have my vitals checked. Shortly after the "flush" began, I noticed something had changed. My chest began to tighten and it felt like I could not take a deep breath. I didn't say anything at first. I thought maybe it was just me. I then began looking at the IV. I checked it several times. I even looked at the syringe to make sure it was only saline. It felt as though maybe I had received something different than saline. I finally leaned over to Nicole and told her what was going on. Nicole said I needed to tell the nurse. I asked her if she wanted me to stand up and walk over or yell real loud. Nicole got the point and walked over and told Gary. Nicole then looked at my chest after telling the nurse. Nicole said the upper part of my chest was bright red, almost looked like I had a sunburn on my chest.
Gary, being new, walked over and looked at the IV. I could tell Gary was not sure exactly what to do. Luckily I did not feel like I was in jeopardy. I knew I could breath but I just couldn't take a deep breath. Gary walked over the desk and told one of the other nurses what was going on. Suddenly, four nurses ran to where I was sitting. They unhooked me from the IV and began hooking me up to take my vitals. I was then given oxygen as well. I was told that Dr. Grossman was contacted and was on his way. When Dr. Grossman arrived, he spoke with me for a moment. A new IV of saline had been hooked up and was being infused. Dr. Grossman said it sounded like a reaction to the medicine so he had them give me benadryl through my IV.
Benadryl and I don't get along! Instead of calming me down and making me sleepy, it makes me "wired". I feel like I want to crawl out of my skin. After the benadryl was given, my injection site and bicep on that arm started to burn. Nicole said it was the benadryl. The nurses and doctor were monitoring my vitals and listening to heart and lungs. The benadryl kicked in and now I was very "fuzzy", sleepy, and get irritated by the medicine. Dr. Grossman then told me that, though he thought it was a reaction to the medicine, they needed to rule out that it was not heart related. Dr. Grossman said that meant I would be taken to the ER at U of U Hospital. Dr. Grossman said it may include having to stay overnight for monitoring. I was beginning to get a little worried!!! A tech showed up and took an EKG. It was really quick but removing the stick on leads was painful.
Shortly after this, Nicole walked out for a minute to start notifying family of what was going on. I overheard the nurses say that Airmed was on the way to take me to the hospital. This was a little bit funny because I was like 100 yards from U of U Hospital. What I learned was that the Airmed team was coming over and would take me on a short ambulance ride to the hospital. When I told Nicole Airmed was enroute, she did not believe me. Then they showed up!!! They began hooking me up to their machines to transport me to the hospital. I could also tell that others in the infusion center were asking questions about what happened. My "situation" was causing quite a "ruckus" in the infusion center.
I was transferred to a gurney and rapidly, I didn't know they could move that fast, taken out of HCI and then into the ambulance, and into the ER. They kept asking me if I was feeling any better or if the symptoms werw still present. The problem was I was so messed up by the benadryl, I really had to concentrate on whether I was still having problems taking a breath!! The breathing issue continued all the way to the ER. Shortly after arriving at the ER, the ER doctor, Dr. Holly, asked if the symptoms were still present. I noticed that the tightness was now gone!!! My only real problem regarding being comfortable was the fact that I really needed to go to the bathroom!!! I did not want to have a catheter inserted, and I did not want to use a plastic urinal. I wanted to walk to the bathroom and GO!!! Nicole was able to get the nurse to agree to let me use the bathroom. Once I was finished, I felt much better. Now I was just aggravated by the benadryl.
The Airmed nurses had stuck pads on my shoulders and sides to hook up the monitors. Luckily then put them where I did not have any hair. That was great until they wanted another EKG. They must stick on twenty of those pads and, of course, it is right on whatever hair may be there!!! They also took a chest xray. Dr. Holly said that they needed to be sure there was nothing wrong with my heart and that because I had cancer, they needed to make sure I did not have a blood clot causing the problem. They checked some labs and looked at the EKG and xray and determined that everything seemed fine with my heart and it was doubtful it was a blood clot. The consensus was the breathing issue was a result of the reaction from the medicine. Phew!!! I was also released from the ER and was able to go home without having to stay overnight.
Nicole and I drove home, stopping to get something to eat on the way. I was really getting bothered by the benadryl. I was aggravated and sleepy, but could not simply lay down and sleep because of the way the benadryl made me feel.
Nicole was able to get a hold of Yolanda, one of the officers at work. I did not have my phone with me with the phone numbers in it but luckily Nicole had Yolanda's number. We told Yolanda what was going on. She said she would call my Captain, Bob, and let him know I was not coming in on Thursday.
After getting home, I went straight to bed and fell asleep. Nicole said I slept like a rock. I told Nicole that it felt like a slept on a rock. I woke up feeling like I had a cold. I was congested, coughing, and it felt like my lungs were full of "junk". Nicole, who had gone to work, called me and told me to just stay downstairs and rest. Nicole had Mariah bring down a humidifier. Nicole was able to speak to Karen who told Nicole to have me take some Xantac or Pepcid. Karen said it would also help with the breathing difficulty. I took the medicine but it did not seem to help.
Thursday, late afternoon, I had a doctor's appointment with a new doctor, Dr. Nobahara. Nicole had decided weeks earlier that I needed an internal medicine doctor instead of just a family practice doctor. We saw Dr. Nobahara and filled him with everything that was going on. Dr. Nobahara did an exam and told me that he also felt it was a reaction to the medicine.
It was during the day Thursday that it hit me. I had been on cruise control and in denial. It finally hit me that I indeed was sick and that I indeed was in a "fight" for my life and against cancer. Though I had chosen not to do regular chemotherapy, I was now experiencing side effects from the medicine. This was good and bad news. The bad news was that I was now getting a taste of what it was like to get "sick" from chemo treatment. The good news was that I most likely was getting the medicine. I would not have had a reaction to the placebo. The medicine, which has had great results with fighting melanoma tumors, was most likely being given to me. I was most likely getting observation along with the medicine that could make a tremendous different with my overall outcome and assist me in winning this "fight" with cancer.
What a scary story! Keep up the fight. I pray for you and your family.
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