Some of you know that I have been struggling for awhile. I have been feeling so lousy and have rarely left my bed. Consequently, I have felt that I had nothing of value to contribute to The Chronic Conversation. Needless to say, that’s not very heartening when I am such a newbie to the Blog World. Today, though, I got fired up and feel the need to write.
My pain journey would have had a very different path were it not for My Guy. He has been with me every step of the way, has patience beyond belief and has never, and I mean never, lost faith in me. I remember a conversation we had years ago when he told me, “I won’t give up on you as long as you don’t give up on yourself.” And I haven’t. I have certainly had really black times but I have always rallied in the end. I have not won the war but I’m still picking my battles.
There are many pertinent aspects of my relationship with my husband and how he has been indispensable to my chronic life. Since this is a blog, I promise not to write a book, so let’s discuss one aspect instead: What Do You Do When Your Caregiver Gets Sick?
In 2016, I traveled across the country to the family farm to spend some time with my parents. They had recently had some remodeling done to the farmhouse and my mom was having trouble with the contractors and bringing the project to a close. My dad, at 86, was in remission from stage IV lung cancer and while doing really well, he was not in a position to be of much help to Mom. And she was exhausted from firstly, nursing my dad back to health the year before and now, dealing with delinquent contractors and an entire house that needed to be put back together. I was in a fairly good place that Spring, physically and mentally; in a remission of sorts. So I flew out to the farm for what would become a few month’s stay. The farm has always been a rejuvenating place for me and I was excited to see everyone. Mom and I found a new contractor, got the work completed and I had a ball helping to redecorate and organize; two of my favorite things.
When I left home, My Guy was experiencing some fatigue and had been for awhile. We discussed seeing a doctor but he thought he was just having trouble sleeping and neither of us thought much more about it. I remember thinking at the time that maybe a break from worrying about me so much would be good for him. A welcome reprieve. I seriously believed that I was contributing to his stress, therefore causing added fatigue.
While I was away, in addition to a mountain of house stuff, I landed up in the hospital with a problematic kidney stone, because, sure, why not add to the load? At the same time, MG told me that his fatigue was getting worse and that he finally decided to see a doctor. Warning bells started to go off in my head. I can literally count the times on my fingers in the 27 years we have been together that MG has been sick. Knowing how long this fatigue had been going on and having him now relent and see a doctor must mean that something was seriously wrong.
Following two visits to the ER and surgical intervention, I was seeing a kidney specialist to wrap things up one day and MG was seeing his physician hundreds of miles away on the same day and ironically at the same time. He called me from the parking lot of his doctor and I answered from the parking lot of mine. The first thing he said to me was, “Don’t worry, I’m not going to die, but I have something called multiple myeloma. They say it’s totally treatable so I don’t think it’s a big deal”
My mom had accompanied me to my appointment that day. I remember sitting in the car across from her in the hot sun while talking with MG and feeling so relieved. I gave Mom the thumbs up, mouthing, “Everything’s okay. They figured it out.”
As soon as MG and I ended the call I looked up multiple myeloma on my phone as none of us had ever heard of it before. Oh. My. God! At first glance, this did not look like a “no big deal” to me. As soon as we returned to the farmhouse, I jumped online and began researching in earnest.
According to The Mayo Clinic, “Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.”
I begin to panic. In the past 27 years, whenever I was panicked or, let’s be honest, mildly upset, MG was there: solid, strong, unwavering. He is my rock, my touchstone, my reason in the face of insanity. But I was on the farm and he was way back home. I vividly remember sitting cross-legged on the big Civil War-era bedstead in the Red Room, Mom’s laptop to my left, my tablet on my right, feverishly taking notes on a stack of scratch paper from Dad’s desk, the bile rising higher and higher in my throat with each new fact I uncovered. I was bereft. My arms ached to hold MG. I needed him desperately. To comfort him. And to be comforted.
The plan all along had been for MG to drive across country to pick me up from the farm, along with a few antiques I found in some local shops. He would spend some time relaxing and hanging with the family and then we would drive back together with the dogs. Both of my parents and I were concerned about keeping to this plan. Driving from home to the farm was a long 2-day trek but MG loves to drive and couldn’t wait to get on the road. Road trips have always been balm to a smarting wound for him and nothing relaxes MG more than driving for a long period on the open road. The three of us could not dissuade him; he assured us he was not being irresponsible and knew he could handle it. He WANTED to do it: NEEDED to do it. I trusted him. The next day he was on his way.
The time between the parking lot phone call and MG’s departure from home to the farm was a matter of days. So not much time to process. The more I researched, the more frightened I became. I knew that I couldn’t rely on everything I found on the internet and tried to stay within the more reputable sites. But even those provided frightening statistics.
Holy Fucking Hell! I assure you I am selecting my verbiage carefully here. This is the part where the profanity becomes relevant: MM is an incurable and rare form of blood cancer and the survival rates are not high.
“Survival rates are based on comparing people with multiple myeloma to their peers who don’t have cancer. According to the American Cancer Society (ACS), these are the average survival rates by stage:
- Stage 1: 62 months, which is approximately five years
- Stage 2: 44 months, which is approximately three to four years
- Stage 3: 29 months, which is approximately two to three years
It’s important to note that survival rates are calculated from the time treatment begins. The average is the median survival rate. This means that half of the people with multiple myeloma lived longer than the average length for each stage.
These figures include people treated over the past 5 to 25 years. The ACS notes that treatment has improved a great deal during that time period. This means that survival rates will hopefully continue to improve.”
I’m always the researcher in the family so MG tells me to see what I can learn about MM and we can make plans when he arrives. He, of course, knows it’s cancer as he has seen an oncologist but has been given very sketchy info by this man who does not specialize in blood cancers and whose bedside manner leaves a lot to be desired. Additional tests are ordered and MG is told to wait until all of the results are in before he makes any decisions regarding treatment. He will then be contacted by phone. He can take his planned trip and then he can began scheduling the treatment process upon our return. The office knows MG will be out of pocket for the two days he is traveling. MG packs up the dogs and hits the road.
Meanwhile, back on the farm, I am completely overwhelmed by what I am learning. I have a meltdown but make it a short one as adrenaline kicks in and I have work to do. My family is incredible and rallies round: the parents and all the cousins who live nearby. They are my lifeline now. A favorite cousin who is more like a sister is a veterinarian and her science background helps me to break down and understand the medical terminology and treatment protocols. She is there for me round the clock as I jump into the SUV and race the mile and a half to her adjoining farm to discuss some new fact I’ve discerned. And to hold me in her arms when I cry.
I stay up throughout the night researching oncologists in our area and read through hundreds of online resumes, trying to find the right specialist for our needs. As MG is driving, he tells me that he has gotten some information about a particular myeloma specialist from a physician friend who knows someone with the same disease. This someone has been in remission for over 14 years and tells our physician friend that MG should not see anyone but his specialist. The friend will text the name to MG.
I continue my research and end up with three myeloma specialists who stand far out from the rest in the field. But my gut tells me that one of the three is our guy. When MG arrives at the farm, he has the name of the specialist sent via text: it’s the same specialist. I feel that my research has been validated.
Let’s talk now about when My Guy arrives at the farm. Sweet Jesus, he looks horrible. I am in shock that in the few months I have been away, this is what has been happening to MG. He has aged fifteen years and has lost so much weight. There are permanent dark rings around his eyes and he looks haggard and, dear God…fragile. His face is as ashen as his hair and beard have become and I feel deep shame rising up within me that I have been away so long and not at home where I so obviously needed to be. When my sister/cousin sees him, she gives me a shocked look when he leaves the room and says, “My God, you’ve got to get him help now! We cannot wait!”
Now, MG is a warrior. He is a second degree black belt in Kempo karate and at 5’11 and 210 lbs, he is solid. His legs, which I adore, are like tree trunks. Not a sequoia but more elegant, like a Mountain Ash. He is firmly attached to the earth both in his level headedness and his spirit. He is strong, wins most arguments because he can shout louder than I, and can be rather intimidating to others, if crossed.
When he takes his shirt off that night as he undresses for bed, I want to weep. There are deep indentations where his arms meet his shoulders and he has an old man chest, not the brick wall which had last held me just a few short months ago. I have never seen him like this. MG trains regularly and although his extra 5 lb tummy comes and goes, everything about his physique is strong and healthy. But not anymore. A gaunt old man climbs into bed beside me that night and I crawl close, as though he could be snatched from me at any moment.
MG sleeps long and hard that night and in the morning tells us that it’s the best night’s sleep he’s had in months. After breakfast, we move upstairs to the great room with the laptop and all of my notes, as well as all of the paraphernalia that MG was given about myeloma to read up on. We begin comparing notes and then start making calls.
I cut and replaced this next section several times as it is a definite whine but I also think pertinent to the story. As MG was traveling, he missed two calls from the oncologist who diagnosed him but he wanted to wait until he arrived on the farm before returning the calls. He wanted to be with me when he heard the additional test results. Only two days have passed since the first missed call. That very morning as MG is about to contact the oncologist, the oncologist is calling him. MG answers but mobile reception is lousy in most areas of the farmhouse and as MG races to a better spot, the call is dropped. MG calls the office back at the same time the oncologist is leaving a very heated voicemail on MG’s cell.
It makes my blood boil every time I think about this bloody doctor. This physician knew about MG’s travel plans and that he might be difficult to reach within these two days. On the voicemail, he tells MG that he is not interested in working with a patient who obviously isn’t interested in taking care of himself and to find another doctor. When MG explains the missed connections to his nurse, reminds her about his travel, and that he just that minute missed the doctor’s call, she says she understands but that the doctor can no longer take his case. Although this seems entirely irrational to MG, he calmly tells the nurse that he understands but that he needs to speak with the doctor to get his test results. The doctor refuses to speak with him (we can hear him through the bloody phone bloody whispering to his nurse and the nurse is the one left giving MG the results. Who the hell does that? And wait until you hear the results!
Eighty percent of MG’s blood marrow is cancerous, he is going into renal failure, his skull is literally littered with lesions, and his cancer is at Stage III. We feel as though we have each been slapped across the face AND punched in the gut.
We stare at each other stupified. Our mouths literally hanging open. You find out you have cancer, you ‘re in shock, you play phone tag with a medical professional for two days and you’re deemed unworthy of care because said medical professional has been inconvenienced because you missed his calls? Un-fucking-believeable!
Onward! After we remove ourselves from the ceiling and calm down, MG proceeds to call the specialist we had both found. I find this serendipitous and we are both high with anticipation. His office staff is extremely professional and kind but explain that the doctor is booked six months’ out. Do we want to make an appointment? We do. Would we consider another physician in his group? Well, we prefer not but we answer in the affirmative anyway. She is available in 3 months. Okay. We also call the other two specialists I found in my research and make appointments. No one is available for at least 6 weeks. We’re not certain what to do. We’re still trying to process but remain calm. It’s not easy. What the hell do we do now? Do we have 6 weeks? We don’t even know how aggressive this cancer is and there is no one who can tell us.
MG and I are sitting upstairs in the newly added great room. It is a large room, hence the name and there are floor to ceiling windows on three sides. Outside there are scores of mature trees and rolling pastures. It’s a bright sunny day and all is calm and beautiful. You can hear a tractor motor in the distance and a cow calling for her calf. The dogs and cat are frolicking on the lawn and the cat is definitely in charge. We feel as though we are sitting in a luxurious tree house with all of the greenery spilling in through the tall windows. It’s truly a piece of heaven. But in spite of all of this peace and beauty and tranquility, we appear to have fallen deep into hell.
Dan’s cell rings and he picks up. It’s the office of the first specialist. The one who we both found and who was booked 6 months’ out. He will see us if we can be in his office at 7:00 am on Friday. Can we be there? It’s Wednesday afternoon and we’re 1500 miles away. MG says yes and concludes the call.
We’re speechless. Again! All of this has happened within 90 minutes. Relief that we are finally together sorting things out. Anxiety about trying to reach the oncologist. Disbelief followed by Anger at the oncologist’s non-response. Shock as we process the test results. Anticipation as we attempt to see the specialist. Disheartenment as we realize he is booked so far out. Fear as we cannot find anyone to see us right away. Helplessness as we are not certain how to proceed. And now, Excitement and Relief and Dismay and Hope that a miracle may have just happened.
MG paces the room, anticipation growing. “We need to get the dogs and get packed right away! Can you be ready in half an hour?” I look at him and try to focus. “We’re not driving. That’s crazy! We’ll fly there, go to the appointment, fly back and drive home.” MG agrees. “Of course. I’m not thinking straight.”
I jump onto Travelocity and look for flights. The only option for us is to use a regional airport but flights are few. I get us booked on a morning flight but with two layovers, we don’t arrive at our home airport until midnight. By the time we get home and crawl our sorry bums up the stairs to bed, it’s past two in the morning. Our appointment with the specialist is in five hours.
To be continued: When the Patient Becomes the Caregiver