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Mohr’s Myeloma Musings: Waiting Games
By: Steve Mohr; Published: December 31, 2015 @ 2:08 pm | Comments Disabled
Patience is not one of my virtues.
I was reminded of this as I began my Christmas shopping five days earlier than normal. I waited 20 minutes to get a smoothie at our local fast food restaurant. It is because of waits like these and my lack of patience that I normally do my Christmas shopping on Christmas Eve day.
There is little traffic, the stores are not crowded, the lines at the gift wrapping kiosks are not long, and one doesn’t have to wait for 30 minutes to get a table to eat. To top it off, there are great sales. Never mind that things are picked over and inventories are low. Those are minor issues since my Christmas shopping has been limited for the most part to getting stocking stuffer-type items. I learned long ago that my wife and kids enjoy gift cards more than my creative attempts to purchase clothes and jewelry for them.
If there is one thing that those of us with multiple myeloma have in common, it is the fact that we spend a great deal of our time waiting. While some have been quick to point out how having multiple myeloma has made them a better person, I’m not sure it applies to me. However, I do have to acknowledge that in many ways I am a more patient individual than I ever have been, which may be due in part to the fact that living with multiple myeloma involves waiting. Some of these waits are rather trivial, some are short, some are longer, and some are excruciating in nature.
One wait that no longer bothers me is waiting to see my doctor, whether it be my primary care physician or my oncologist at my cancer center. While a wait of 15 minutes in the past would drive me crazy, regardless of how late I may get in to see my doctors, I accept it as the cost of getting sound medical care and personal attention. I enjoy the fact that both my primary care doctor and oncologist take the time to treat me as more than just a patient. They engage me in discussions of local sports (my primary care doctor) and banter good naturedly with me about a whole host of issues relating to education (my oncologist).
One of the more difficult waits is for the three-month check-up test results to be posted. While many of the results are available by the time I see my oncologist on the day of the appointment, the results I am most eager to see – the serum protein electrophoresis (SPEP) and the serum immunofixation electropheresis (IFE) tests – usually aren’t available until several days later.
I have always told my administrative team at work that I want to hear good news fast, but bad news faster. Because the last tests to be released can be the bearer of bad news, the wait for those test results is stressful.
In addition to the usual battery of blood tests, my doctor ordered a bone survey during my three-month check up two weeks ago because I was experiencing bone pain in my arms, legs, and hip. I was fully expecting to hear that new lesions had developed or that old lesions had grown. I was pleasantly surprised to find that things were pretty much the same as what they had been almost 18 months ago.
A less pleasant surprise was the fact that in those test areas that that I worry about the most, my condition has changed. A “faint to moderate zone of restriction accompanied by polyclonal gamma” and “0.007 g/dL M-spike” on the SPEP test, and “minute amount of IgG kappa monoclonal protein is present” on the IFE test, were the words that jumped off the screen as I read these test results.
Did these results indicate that the worst wait of all – the wait for the inevitable relapse to occur – was now over? My doctor assured me it was not anything to be concerned about because the changes are so small. Because he is not worried, I won’t be. Having said that, the wait for my next test results in March will no doubt be more stressful than normal.
I recently had a great deal of dental work done. To control the swelling of my gums, my dentist prescribed dexamethasone [1] (Decadron), the same steroid that, along with Revlimid [2] (lenalidomide), was a part of my induction treatment. Even though the dosage was half of what I had been prescribed during my induction therapy, I wondered if I would go through the frustrating wait of trying to get to sleep that haunted me in in my earlier use of dexamethasone. The dex performed as expected. I waited a full 37 hours before falling asleep after taking the first dose.
Without question, the worst waiting experience I have had with multiple myeloma was waiting to be discharged from the hospital following my autologous stem cell transplant. As my numbers neared the target that had been set for my release, the hours passed so agonizingly slow that hours seemed like days.
Unlike others who have had painful bone marrow biopsy experiences, I have been very fortunate, as the pain I have experienced with this procedure has been minor. But there is that nervous wait for that brief moment of pain, fortunately only a few seconds, that occurs when the specimen is withdrawn from your bone marrow.
A wait I am almost embarrassed to share is waiting for blood draws to end. The sight of the blood of others does not bother me, but the sight of my own blood causes me to become light headed and nauseous – not a good condition to have with the number of blood draws that make up the life of a multiple myeloma patient. Fortunately, I can overcome this by averting my eyes from the whole procedure until I hear the nurse say she is done.
The ultimate and most anticipated wait for all of those affected by multiple myeloma revolves around that day when a cure for multiple myeloma is announced. While that wait did not come to an end in 2015, many new, exciting developments did occur that give us hope that maybe the wait for more effective, less toxic treatments – and an eventual cure – may not be as long as we fear.
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here [3].
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[1] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid
[3] here: https://myelomabeacon.org/author/mohr-steve/
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