Hi again. You may remember from the last post that I was waiting to hear from Dr. Kennedy about the results of my tests and having chemo #3. There was something significant for me in getting #3 out of the way since it is the halfway mark. When I spoke to Dr. Kennedy she said that my chest x-ray was negative, my bloodwork, including blood and urine cultures were fine and that I should plan on having chemo on Thursday the 4th as scheduled. Since we spoke on the afternoon of the 3rd, she said to take both doses of decadron together. The temperatures have continued but I have been able to take tylenol at longer intervals. I could go about 16-18 hours before the temperature would break 100, but it would hover in the 99s. I took tylenol at 3:30pm and Dr. Kennedy asked that I not take another dose before she saw me in the morning before chemo (which was scheduled for 8am). The fever seemed to break after the decadron and by morning I was back in the 97.9 range..go figure.
We went to chemo feeling a little hopeful. It started out well - I didn't have to be weighed in or have bloodwork because I had just done all that 3 days earlier. (and I had lost a few pounds!). Dan (a favorite nurse) checked me in and paged Dr. Kennedy. She wanted some routine bloodwork, vitals, pulse ox, etc. and then would see me to write orders for the chemo....uh huh...temp was down, blood pressure and heart rate were up and resting pulse ox was 94. These were not particularly good indicators. My pulse ox should have been 100. So....when Dr. Kennedy came in she made me walk around the loop of the chemo room and the office with a pulse ox monitor on my finger. My response was to promptly de-sat to 87 while my heart rate went up to 149. I was still asymptomatic (no coughing or shortness of breath)
So chemo was cancelled and I had to go to the ER for a CT scan since they were so backed up. Dr. Kennedy was looking for a blood clot (pulmonary embolism) or inflammation of the lungs possibly caused by one of the chemotherapy drugs. Once in the ER I felt as if I had died and gone to ER heaven (probably not the best metaphor under the circumstances) As one who has worked in an ER for 27 years I can honestly say that my experience at Torresdale was remarkable. The doctor and nurse were both personable and competent and kept me and my family informed every step of the way. My nurse came to check on me in CT and reported back. When Dr. Kennedy decided to admit me to the hospital, the ER staff called for a room and my nurse took me upstairs herself within minutes of getting a room assignment on the telemetry unit.
The good news was that I didn't have an embolism, but the scan did show pneumonitis which is irritation or inflammation caused by one of the drugs. Dr. Kennedy said that she is glad that we caught it because it could be life-threatening especially if I had gotten more chemo. The damage can be reversed with meds but she wanted to talk to some colleagues about how to proceed with my treatment regimen and also wanted to get another mugascan to make sure that my heart was still ok. My lab work was off (white count of 20,000) but it was hard to say how much was affected by the decadron.
So I was admitted to telemetry so that I could continue to be monitored. My labs on Friday were all back to normal. My temp stayed low, blood pressure was good, and slowly my heart rate came back to normal (unless I walked around the hall without oxygen). With oxygen my pulse ox stayed at about 97. Because I can speak "ER talk" the staff gave me all the details I asked for about my condition. I won't bore you here but it was helpful to me. The muga scan was fine (thank God) and I had a pulmonary consult.
Here is what we came up with for the moment. Dr. Kennedy will take away the cytoxin from my chemo. She says that this is the most likely drug to be giving me problems, although it could be any of the others including the neulasta shot. She also is changing the neulasta shot to neuprogen and I will have to go for several shots every other day following chemo. I'll be taking prednisone, bactrim, and pepcid to try to clear up my lungs. I have an appointment to see Dr. Kennedy on December 15th and I will have a repeat CT. Hopefully, I will be able to have the new, improved, chemo #3 that week so we don't get too far off schedule, and hopefully it will be the right combo. I want to have the best possible regimen to avoid any recurrence, but I don't want the treatment to kill me or worse...so I am trusting her to know what she is doing. I know she will be vigilant.
While all of this sounds scary and crazy (and it is), it is a better outcome and treatment plan than most of the others so I am grateful. I have been listening to a series of wellness CDs for Fighting Cancer, Optimizing Chemotherapy, Managing Fatigue, Dealing with the Side Effects of Cancer and its Treatment, etc., and they have been very helpful. But that's a story for another time...
For tonight, as the temperatures drop my thoughts turn to the 60-70 people, about 50 of them youth, who are sleeping out in cardboard boxes on the front lawn of the church to raise awareness and money for the homeless. May God be with them and keep them warm. Thanks for listening....
We went to chemo feeling a little hopeful. It started out well - I didn't have to be weighed in or have bloodwork because I had just done all that 3 days earlier. (and I had lost a few pounds!). Dan (a favorite nurse) checked me in and paged Dr. Kennedy. She wanted some routine bloodwork, vitals, pulse ox, etc. and then would see me to write orders for the chemo....uh huh...temp was down, blood pressure and heart rate were up and resting pulse ox was 94. These were not particularly good indicators. My pulse ox should have been 100. So....when Dr. Kennedy came in she made me walk around the loop of the chemo room and the office with a pulse ox monitor on my finger. My response was to promptly de-sat to 87 while my heart rate went up to 149. I was still asymptomatic (no coughing or shortness of breath)
So chemo was cancelled and I had to go to the ER for a CT scan since they were so backed up. Dr. Kennedy was looking for a blood clot (pulmonary embolism) or inflammation of the lungs possibly caused by one of the chemotherapy drugs. Once in the ER I felt as if I had died and gone to ER heaven (probably not the best metaphor under the circumstances) As one who has worked in an ER for 27 years I can honestly say that my experience at Torresdale was remarkable. The doctor and nurse were both personable and competent and kept me and my family informed every step of the way. My nurse came to check on me in CT and reported back. When Dr. Kennedy decided to admit me to the hospital, the ER staff called for a room and my nurse took me upstairs herself within minutes of getting a room assignment on the telemetry unit.
The good news was that I didn't have an embolism, but the scan did show pneumonitis which is irritation or inflammation caused by one of the drugs. Dr. Kennedy said that she is glad that we caught it because it could be life-threatening especially if I had gotten more chemo. The damage can be reversed with meds but she wanted to talk to some colleagues about how to proceed with my treatment regimen and also wanted to get another mugascan to make sure that my heart was still ok. My lab work was off (white count of 20,000) but it was hard to say how much was affected by the decadron.
So I was admitted to telemetry so that I could continue to be monitored. My labs on Friday were all back to normal. My temp stayed low, blood pressure was good, and slowly my heart rate came back to normal (unless I walked around the hall without oxygen). With oxygen my pulse ox stayed at about 97. Because I can speak "ER talk" the staff gave me all the details I asked for about my condition. I won't bore you here but it was helpful to me. The muga scan was fine (thank God) and I had a pulmonary consult.
Here is what we came up with for the moment. Dr. Kennedy will take away the cytoxin from my chemo. She says that this is the most likely drug to be giving me problems, although it could be any of the others including the neulasta shot. She also is changing the neulasta shot to neuprogen and I will have to go for several shots every other day following chemo. I'll be taking prednisone, bactrim, and pepcid to try to clear up my lungs. I have an appointment to see Dr. Kennedy on December 15th and I will have a repeat CT. Hopefully, I will be able to have the new, improved, chemo #3 that week so we don't get too far off schedule, and hopefully it will be the right combo. I want to have the best possible regimen to avoid any recurrence, but I don't want the treatment to kill me or worse...so I am trusting her to know what she is doing. I know she will be vigilant.
While all of this sounds scary and crazy (and it is), it is a better outcome and treatment plan than most of the others so I am grateful. I have been listening to a series of wellness CDs for Fighting Cancer, Optimizing Chemotherapy, Managing Fatigue, Dealing with the Side Effects of Cancer and its Treatment, etc., and they have been very helpful. But that's a story for another time...
For tonight, as the temperatures drop my thoughts turn to the 60-70 people, about 50 of them youth, who are sleeping out in cardboard boxes on the front lawn of the church to raise awareness and money for the homeless. May God be with them and keep them warm. Thanks for listening....
5 comments:
Hey Susan!
Prayer, what a powerful blessing! As one of those sleeping (or not - as was much my case)in a cardboard box, looking up at the stars, counting my blessings, and praying for those in my life and for you and your journey, you were praying for us! I'm glad your team is strong, your treatment being adjusted for optimal benefits and health. And a little update on the cardboard box adventure - it raised over $5000. for the Homeless Shelter - woohoo!
Thinking about you,
Sandy
I too have faith in Dr. Kennedy. There's more than one way to skin a chemo cat!
God bless the box sleepers and the awareness (and $)they raised. Another fun thing to do with that many boxes, in warmer weather, is turn the youth group loose with boxes, duct tape and a few utility knives. Let them create a fort/tunnel system for the younger kids to play in. Maybe at a church picnic...
I am enjoying wearing my Jingle for Jesus necklace. It actually rings! I guess I am easily entertained.
Hugs from a distance...
Mauri
Hey Susan!
Hang in there Baby! We're thinking of you all the time and hope to see you soon!
xoxoxo
Hey Sweetie!
Sorry we missed your party, as usual it was Cath's B'day and we went to NYC for the weekend. We had a great time.
This month is flying by sooo fast! I have been meaning to check in on you and finally got slowed down enough by the winter storm so that I could stop by and read and write.
It sounds like you have some great care from your Dr. and everyone involved. That boots my faith.
I am dealing with my digestion problems still and am going to have that test next week, which will hopefully shed some light on what the problem with me is. I have been preoccupied with going to Dr.'s and if I have to fill out one more of those long ass Patient History forms I am going to go bananas.
I am going to put all that out of my mind for now as I just rented a bunch of films one being Wanted with my girl Angelina Jolie. Wish you could come over and watch with me. Soon perhaps... Loveya!
Give my love to Sue too.
-Rue
You're amazing. You are truly the most selfless person I've ever known--you feel compassion for others despite all you're going through. You make me proud to be your cousin. I love you.
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