Tuesday (May 6) started our as another short day. Our clinic appointment for the daily Neupogen injection was at 12 noon. We waited just a few short minutes in the waiting area and Doug was called right in.
This is day 2 of the injections that are being given to “call” (my word) the white blood cells out of the bone marrow in readiness for the stem cell harvest.
We went home. Doug wasn’t hungry. He told me I was free to go do whatever I wanted to do and he went to bed. I decided not to go anywhere and within minutes heard him moaning. I went into see if there was anything I could do. He indicated he had pain in his sternum. It got worse. I had never seen him writhing in such pain even when dealing with the disease initially. He said it felt like someone was sticking a dagger in his chest. With a central line into his heart I was anxious thinking it might be a heart attack.
I called the clinic’s emergency line. They said someone would get back to me. No one did (as soon as I needed them too anyway as the pain was more and more severe) so I called again. In the end the clinic nurse I talked to (and who had given him the injection earlier) told me to bring him back to the clinic. I knew Doug was not feeling well because he went in his robe and got into a wheel chair when we arrived.
After an hour in the clinic they sent us to the hospital ER to rule out any issues with his heart. After an hour at the clinic we checked into the ER at 4:00 p.m. After seeing the triage nurse, we waited 1 hour in that waiting ER room. I had Doug put a mask on. I hate sitting around sick people when you don’t know what bugs they are sharing and wished I had a mask to put on.
Finally we were taken back to a stark room and spent the rest of the evening there waiting and waiting as they ran tests and labs. The ER doc came in at 9:15 to talk to Doug for a few minutes and again at 10:30 to say Doug could go home. He didn’t spend more than 5 minutes total. We did have a very nice male nurse who we saw about ever hour.
They determined the attack must have been a reaction to the Neupogen and the ER doc said he hadn’t found anything that would indicate concern with Doug’s heart. Since we hadn’t been home since noon (nor eaten) we were exhausted by the time we piled into bed.
Today (May 7) we had to be back to the same hospital for a CT scan that Dr. Collins had ordered prior to Doug’s spell. (They wouldn’t do it last night as it wasn't part of the order.)
We waited 2 hours in radiology this time for that scan which took all of 10 minutes. We do not have the results of that test nor do we know for sure what Dr. Collins was looking for. The chest X-ray last night did reveal that Doug still has some pneumonia in one lobe of his lung but they knew that before giving him the chemo last week.
Next we went back to the clinic for another Neupogen injection. Today we waited at the clinic one hour after the injection to see if Doug would have a similar attack. He didn’t.
He still has pain in his sternum but we've been controling it with pain medication. His pain is nothing like yesterday. Hopefully tomorrow will be as uneventful. He'll have injections now until the 13th.
We had to get a prescription filled after the clinic visit and can’t believe how the day flies by doing just one or two things.
One thing we learned from this experience is that bone pain is anticipated but is different in every individual. It generally is not as severe in the sternum so close to the heart. I'm glad they were playing it safe with the ER tests.
No one can predict or prepare you for where reaction will actually materialize. As a result of stimulating the cells in the bone marrow, pain in adult patients occur most often in the flat bones whereas in children getting Neupogen the pain is in the round bones. Pain in children is greater due to the fact they are still growing. As one who witnessed the greatest reaction to pain in my husband in our 40 years together for better or for worse, I can’t imagine what it must be like for parents to have to watch a child experience pain that has an even greater impact on their body.
We saw the devastation in Miramar on the news today and Doug said, “There is always someone worse off than I am.”
It’s all about perspective and a heavy dose of patience while we experience the need to sit and wait.
~Carole
