Lori Puente is a myeloma caregiver and tireless advocate for UAMS/ Arkansas myeloma treatment program. Her husband, Dave was diagnosed with multiple myeloma in 2008. Lori writes an excellent caregivers blog called Riding The Wave.
Here, Lori shares her story and experience with CureTalk.
Me: As a caregiver, I am sure that you have many an experience to share with our readers regarding multiple myeloma. Your post, Stage at diagnosis, particularly caught my attention. It brought to fore a point that most of us forget about myeloma with respect to other cancers, the fact that, ‘Unlike tumor cancers, the stage of multiple myeloma at the time of discovery is not a determining factor of your ability to overcome the disease with a decent QOL and life expectancy.’ Can you tell us more about this?
Lori: Within days of our diagnosis and being told Dave was “Stage III” out of three stages, a very dear friend of ours who was a top Internal Medicine physician in the DC area made this very strong statement to me in an effort to bring a sense of understanding and calm to our situation.
What I recall in her explanation to me, and it has been some time ago… is that like the tumor cancers, the staging of MM indicates a set of criteria that tells the physician how impacted by the disease the patient is. It is a somewhat widely accepted arbitrary set of criteria for information at diagnosis. In the case of Myeloma however, it had no bearing on the treatment course or the patient’s ability to respond and have a “full recovery”, however temporary or long term that may be in the context of a terminal disease. The only aspect of the stage that I have anecdotally observed is that it may indicate the speed in which a patient needs to get serious medical intervention.
Me: If I am not wrong, Dave has been battling multiple myeloma for the past 2 to 3 years. What is his current treatment regimen?
Lori: Dave was diagnosed in June of 2008, at the age of 48. By all physicals and appearance he was healthy and physically active. We now understand that he had been fighting the disease unknown to us for a long time, with benign, obscure symptoms that would often be explained with the natural aging process. Discovery of his disease came the same as for many Myeloma patients – he had a catastrophic event. His was a compression fracture at the T8 vertebra when getting out of bed one morning. He had multiple lesions throughout his body as well as borderline kidney failure.
He was treated initially with oral chemotherapy, Thalidomide and Dexamethasone, along with radiation to help mitigate the lesions in his spine and radiating pain across his ribcage, and significant high dose pain medications.
Once somewhat stabilized we began consultations and research on where and how we would attempt medical intervention to eradicate the Myeloma. Since he was stabilized, we were able to take some time to sort this through and make our best decision with the knowledge we had at the time.
With Tandem SCT’s in Arkansas, which took us the better part of a year, since Dave continued to work full time throughout his treatment as a Telecommunications Research Engineer and Manager. He was Stage III, Low Risk, so we were afforded many accommodations in completing his treatment. He had attained a “Very Good Partial Response” (VGPR) from the initial treatment protocol. We started in November 2008 and finished in October 2009. In December 2009 he began Arkansas’ maintenance therapy protocol for his particular presentation, which is 3 years of Velcade weekly infusions, Revlimid oral chemotherapy and Dexamethasone once a week. After almost a year we stopped taking the Dexamethasone due to serious side effects of edema.
Dave’s 3-year regimen comes to a close December 2012 and it is his decision, in consultation with his physician, as to whether he will continue on some sort of therapy or stop all together.
He takes basic supplements.
Me: I read one of your posts about side effects to MM treatment and I quote, “it seems as though many
of the drugs we are taking are to combat a side effect from another drug we are taking.” How does one cope with this? I mean both the patient and the caregiver.
Lori: When Dave was diagnosed and treatment began, I was reminded of the book I read to my children by Nancy Gurney, The King, the Mice and the Cheese. It is a “circular story” based on a folk tale where the King brings in cats to get rid of too many mice that are eating his cheese. Packs of dogs were then brought in to get rid of the cats, then other animals to get rid of the dogs, and so on until it comes back to needing the mice again to rid the King of the elephants.
Often medications manage one thing with a side effect that is then managed by another medication and so on. Interactions of drugs are a specialty unto it’s own and difficult to manage for the layperson that is in a healthcare crisis.
These issues can become highly emotional, both for the patient and the caregiver, in addition to family and friends. Multiple chemicals being thrown into the body daily have an altering effect and are a constant reminder that something is wrong. The idea that it is more than a 10 cycle of an antibiotic is a rude awakening into what lays ahead, which is largely unknown, and causes anxiety, stress, and fear for everyone connected.
In the old days, keeping a cancer patient as comfortable as possible wasn’t exactly the mission for the healthcare professionals. Now, it is paramount that the patient be as pain free as possible and as comfortable as possible. In this effort, you, the patient/caregiver, needs to now be selective and smart about how much comfort you need, whether these drugs are an absolute necessity and which drugs you can try to do without. Constant communications with both your patient and your healthcare team is the best way to manage this particular aspect.
Me: As a caregiver, what tips do you have for others who are looking after a loved one diagnosed with multiple myeloma.
Lori: Caregiver transition is dealing with the area where your patient begins to feel better and you begin to feel that your job as a caregiver is being encroached upon. I discovered this when on an exit interview with our healthcare team Dave and I were both attempting to answer the questions of the nurse and talking over one another. The experienced nurse spotted it right away and indicated to both of us that it was a good sign. Dave was feeling better and beginning to take back aspects of his life, control, and his health. We needed to adjust to our changing situation and redistribute the duties, which amounted to a conversation about what Dave still wanted my help with and what he felt he could begin taking care of himself. The patient feels empowered and the caregiver can often feel lost. It’s important to support the patient’s new found interest in their own healthcare needs and equally important for the caregiver to address their sudden lack of a job and too much free time on their hands.
What is good for you may not be good for them is dealing with the difficult job of realizing as a caregiver that what you would do, who you would see, what treatments you would choose, how you would manage things, may not be what is best for the patient. Frustration for both parties can create new problems in this area. Understanding that it is happening to both of you is indeed important, but understanding that the disease is one body and that that person needs to be supported in their decisions is paramount for their ability to be willing to be treated and be as successful as possible. Caregiver’s are often spouses or close family members and with that comes years of baggage and presumptions. It is best in my experience, to set aside these things as best you can because this is a whole new ball game. Finding ways to agree with the patient’s wishes and support them is the job of the caregiver in my opinion. For instance, Dave didn’t want tubes sticking out of his chest. I could have cared less. But I accepted that this was a minor point for me, while a BIG point for him. I set about the task of finding out if there were indeed imbedded ports. I found out there were and when I requested it for him in his treatment the doctor was completely accommodating and Dave had one less thing to worry about.
Two important posts from my blog may be of assistance:
Me: What would you advice newly diagnosed myeloma patients?
Lori: Priya, my post, ‘Newly Diagnosed, What Now?’, talks about this. I am sure readers would be able to draw parallels.
What you may notice is that it is more important to talk about Plan B if patient relapses. In this context the patient/caregiver will discover how the doctor thinks, how knowledgeable he/she is, and whether or not their initial consulting doctor is the one who is right to treat them.
Thank you Lori. It was a pleasure to connect with you.
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