Sunday, February 27, 2011

I'm no stranger to the pain.....

We arrived in Dallas Thursday about quitting time (5:00 p.m.), although Dallas traffic looks like "quitting time" almost anytime of the day! As we left Mississippi and home, we drove toward the dark clouds, all day. It appeared that we might get into a storm at just any minute, and the wind was blowing fierce. It was definitely one of those "two hands on the wheel" kinds of wind. Not too far outside Tyler, TX the downpour came - a hard, blowing sideways, driving type of rain. Just minutes before, I had given in and let Bob get under the steering wheel so that I could rest. With his pain-killers, the fact that his legs are weak, and his reflexes not so good; I now do all the driving (so you wonder, what was I thinking, letting him drive – on a major Interstate!).  I was glad he was driving during the downpour; it would have been "white knuckles" for me. We switched back, after about 30 minutes.

We're back at the hotel that I stayed in, as I completed my consulting career. We are just about 10 minutes from the Bone Marrow Transplant Clinic; and just across the street from my last client. Little did we know that this is how we'd use all those hotel points that I had accumulated.

On Friday, he got three of the sixteen appointments, over the next seven days, out of the way. He had his first two Neupogen (one of the brand names for the drug,  Filgrastim) injections – 480 micrograms or 1.6 ccs in each arm. The Neupogen is given to treat neutropenia (a condition where the body makes too few white blood cells). Neupogen also stimulates the release of neutrophils (a type of white blood cell) from the bone marrow, and helps to increase the number of stem cells.  In patients receiving chemotherapy, Neupogen can accelerate the recovery of neutrophils, reducing the neutropenic phase (the time in which people are susceptible to infections).

We had been told by multiple (no pun intended) Myeloma patients that these injections can cause bone pain. The oncologist and the Transplant coordinator both advised that Bob could have pain. We just didn't realize that it could come so quickly and with such intensity. We had also been advised (maybe to make Bob feel better about the pain) that the hurting is means that the Neupogen is doing what it's supposed to do and is creating cells. The pain is "supposed" to stop as soon as the collection process begins, but since he'll continue to receive the Neupogen injections during collection, we don't know what to expect.

Side effects to Neupogen are:
·    Bone pain
·    Nausea
·    Vomiting
·    High Blood Pressure

Friday night, the pain started suddenly in his lower back and radiated into his chest, and his blood pressure shot sky-high (from the pain).  I pulled out my magical bag of drugs, as daughter Robbie continued to check his BP (what a nursing team, we made.) We made it through the night and back to the Cancer Center at St. Paul Hospital for another round of (dreaded, this time) injections on Saturday and Sunday morning.

And, as the nurse readied the syringes for the injections, we learned:
·    The pain in the back and sternum are normal because that’s where the largest amount of bone     marrow is found.
·    The Lumbar Radio Frequency Denervation (nerve burning) will do nothing to appease this pain.   
·    The “magical bag of drugs” really don’t help with this Neupogen generated bone pain
·    Tylenol “might” work (so, I have morphine and he needs Tylenol!!)
·    Claritin or Zyrtec “might” work

 And, I have discovered:
·    The pain does persist, in almost “wave-like” sequence, in his back and chest.
·    The nerve burning has not helped this pain
·    The “magical bag of drugs” does not work, with the exception of the muscle relaxer, which helps him to sleep.
·    Tylenol does work, unless he has to get up and move around – then the pain returns.
·    Claritin does not work!

On Saturday afternoon, his sister Sue arrived from Winchester, VA and even though he hasn’t felt well, Robbie and I are enjoying her visit and are making her trip worthwhile!

Tomorrow, several hours of our day will be spent waiting for Bob to have the Tri-Fusion Catheter implanted in his right chest. The day will end with another Neupogen injection, as well as an injection of Mozobil, given in conjunction with the Neupogen to help mobilize the stem cells prior to the collection process.

As Bob says, he’s no “stranger” to this pain …..but enough is enough!!


  1. This sounds like HELL to me. End of story.

  2. It is hell, and it's hell to have to watch him suffer!

  3. Man oh man! So different from how they do it in LR, but what a pain (no pun intended)! They gave Dave shots of morphine and it knocked him out enough to sleep through the pain. What will they use to determine when he is ready? What are they looking for in his labs? Hang in! Sometime I think the hard part of this, is that you don't know if the pain will get any worse. That is what can be frightening. Sounds like you have it all under control Sarah!

  4. As long as he's sleeping, the pain is at bay. Thankfully, he's in the hospital where they know what to do for this.

    Just hoping, and praying, that he has lots of Stem Cells!!