A Husband’s Diary of His Wife’s Leukemia
Wife needed her medications refilled.
Dr. A said, "You must come in. We will not renew prescriptions without a physical."
Physical included a blood panel. Three days later she got a call to come in immediately for a consultation. The referring Dr. A said, "You have a very serious problem." He gave her an appointment with a Redding oncologist and said, "Do not go near any hospitals. At this very moment you have no immunity from anything. Just go to oncologist Dr. B."
We go, we sit, we wait, we meet Dr. B who says, "You have acute leukemia. Without treatment you may have only three to six months to live. You have a 5 percent chance of not surviving the treatment. We cannot treat you here. Stay away from everyone. Stay away from hospitals. I will set you up to go to UCSF (University of California, San Francisco). You must be there by Friday."
We have been married for all our lives. We were in deep shock. Made an immediate trip to a lawyer. Set up a living trust. Health power of attorneys. Mine says “Take me to the river, drop me in the water,” an old gag, but it could be in there. Set beneficiaries. Notarized all. Recorded at court house.
Arrive at UCSF Parnassus campus. Met with doctors, wife had tests, bone marrow biopsies. Oh, boy.
Evaluation: Immediate treatment. Get your hospital luggage together and here is your room on this wing and floor 11. Strong chemo, hair evaporates (falls out). Isolation room, masks. More chemo juice. And that was weeks one and two and three.
A month passes. Blood counts go to zero (nadir) and then come back up as expected. Released for 10 days. We look at one another and are dazed. Back as scheduled. Now consolidation chemo, which we have done for four months with short breaks between. It turns out there is bad, medium and good leukemia. Five years ago they could not determine which you had. So they just blasted patients with everything they had. Now they know much more about treatment protocol. She has the good kind of leukemia, if anything is good about it. Dr. told us that after this is over (six months of our lives) and periodic tests for a very long time, she has as much of a chance of a recurrence as I do of getting leukemia. It was not a compliment that made me completely at ease. (It's a guy thing.)
With all this hospital experience we've learned the codes that are announced on loud speakers. Codes white, pink, purple, red, blue. Blue is the one that shakes us up a bit. Not breathing. We have memorized the in-room menu. Ugh. We've learned I can carry in food from local restaurants, until her counts drop. I've learned to fake illness so I can skip a hospital meal and go to a local restaurant for Dungeness crab and white wine, a medication I require to rejuvenate myself occasionally.
They will serve me a tray of hospital food as a guest for a modest price. So I am forced to eat that steam tray stuff with my wife. It is an obligation. You are dependent on the staff for everything. You learn everyone's name, (over a hundred nurses), treat all with recognition of their high skill in their specialty of blood and bone marrow diseases. Remember they have families and personal problems and off days, as we all do. You can guarantee a better supply of toilet paper, etc. if you always say thank you, if you are awake.
We learned through long talks with doctors and staff that places like UCSF are where you want to go if you have a serious illness. You should pass beyond a specialist in private practice and get to a major PUBLIC cancer institute. We were assigned to one of three teams of leukemia doctors and a dedicated team of experienced leukemia nurses.
A team doctor visits her daily. They meet on a regular basis with the head of the leukemia "department" and others to present her case, discuss her condition, and decide on treatment tweaks. The team of attending nurses check her vitals several times a day. The 4 a.m. check is a real pain, I've been told on authority. Lab results are posted on a white board in her room within hours so we can monitor how the blood counts are reacting. Everything is electronically charted. I am able to check the medications, charts and graphs of all the blood stuff from my laptop, none of which I understand, but it makes me feel empowered.
I asked various doctors and nurses why they worked at UCSF. They work there because they want to work there. The basic doctor story: I joined a private practice. It was an experience. A new leukemia patient was assigned to me. I prescribed chemo treatment A, the best scientifically proven treatment. Later I was scolded by the senior partner. Always go with treatment B, we get a higher reimbursement from the insurance. The doctor was gobsmacked. Ultimately he moved to UCSF because he would be on salary. Can't buy a BMW every year, but can recommend the best treatment regimes, because personal profit is not a consideration.
Think about that for a moment before you go to a physician in private practice when you have a very serious medical condition. Acknowledge to yourself that your doctor is running a business and has to make a profit to survive, just as we all must do. Your doctor may be terrific, but has got to think about surviving in private practice.
When I was a research assistant in graduate school I supported a study in medical economics. With permission, we sampled the billings of internists with the provision that they could see the anonymous statistics from other practices. Bottom line: If an internist had an xray machine, many got xrays. Others were shot doctors. If you came in you got a vitamin B shot on the way out, etc. It is a business. Back in the day, the Dr. came on his wagon and fixed your broken arm. You gave him some chickens and all was well. We no longer live in the day.
The doctors: Here at UCSF we have had doctors come in, sit down and just talk until we exhausted our questions. How are you feeling? Let me explain the numbers. Here is what we expect. I'll write a diagram of what is going on. How's your husband doing with his crab withdrawal? Is there anything we can do to make you more comfortable?
I've talked to many of them. How many patients do you care for on your 12 hour shift"?: Three or four. (Taking care of a leukemia patient is an intensive, time-consuming experience.) I asked, Where do you live? How do you commute in San Francisco? The stunner was the small number of patients they each focus on. It really set me back in the very uncomfortable chair in her room (yeah, I'm suffering too.)
The staff is extraordinarily professional and dedicated. The nurses forcefully question the doctors to be certain about what is next and whether it makes sense to them. Two nurses are always required to check and double-check the administering of bags of chemo, blood, platelets, etc. They read numbers back and forth to confirm everything about the treatment. (I have asked for the leftovers, and they do not laugh.)
There is a computer terminal in every room. They key in every nuance about patient and family interaction. A team Dr. comes to visit. Says, "I see your husband had no crab today, and that it's your birthday, right?" Lesson here, whatever you mutter about your condition or thoughts or mood, it is shared with the whole team, physicians and the other nurses, as shifts change.
I just cannot say enough about the team thing. It really is a team. They all know us personally, and we them. It's just a very good thing. The nurses carry a load. They work so very hard, as do the doctors. We wish we could do more than just say thank you.
Life in the city
Expensive. Online, you can find folks who will rent an apartment or room short-term. I physically went to the front desks of five hotels and inquired about long-term rates. All expensive. I settled in one near Fisherman's Wharf (crab country). After the first week, I threw myself on the floor, cried, and they cut the rate in half, for me, the car, and a promise that I would not do that again, after which they threw in a refrigerator and a microwave.
Well, I'm exaggerating just a little about the floor thing. But I have found that you can negotiate for almost anything, if you would put your pride in your back pocket and always use the words, "Can't you do better than that?" This negotiating technique only works at the front desk, not on the 800 number. The only thing I could not negotiate was the daily trip total of 1,200 miles between hotel and hospital to this point, and still counting.
When we walk the halls for her exercise, pulling the chemo stand with bags of juice (12 laps is a mile), we have met many patients and families. Many found their way here when a community hospital and private Dr. ran out of options. All now very sick, perhaps because of the delay. If you have a serious illness get to a serious hospital with all staff on salary.
Life in the hospital
On our very first night, my wife shared a room with another patient who had just come in for treatment. Private rooms come shortly after treatment begins. Her husband was sitting in a "sleeping chair" next to her bed. It is a chair that folds out, and provides the worst sleeping experience you can imagine. We talked. There is a toilet and shower down the hall for spouses. He was sleeping by her bed or in their car every night. No money for a hotel room. We've observed this situation on almost every trip back for treatment.
My wife is going to be fine. She was given positive test results for the next two years. For the next six months she must stay away from crowds, kids, and vegetables that are not cooked, e.g. salads and anything that wiggles. I'm worried about my crab supply.
Get a physical and blood panel on a regular basis, something I have not done since 2008 (another guy thing). With cancer you may not show any symptoms until you are really in deep trouble. If my wife's prescriptions had not been due for refill, this would have been a very different experience. She showed no symptoms whatsoever. As she received treatment they all said she was extraordinarily lucky, as I am to have her with me and healthy.
I'm scheduling a physical for myself as soon as possible.
Last thought: Always request copies of your blood panels and summaries of your doctors' notes. Not an easy thing to get after some time has passed. The first thing your referred doctor will ask is for your previous lab work. You own your records. We knocked their socks off when we handed them over on paper from our private file.
It seem totally impossible that we started this adventure eight months ago with a very dire prediction and now the end is in sight with nothing but incredibly positive news. Never thought “complete remission” would be part of our vocabulary, let alone define putting our lives back together.
We owe so much to so many loving, caring, selfless people. Close family, distant family, friends, and medical personal by the dozens who've been available to us from day one. Never, never, never take for granted these people, who are so important to our well being before, during and after life's curve balls.
Leukemia, what's that?
From Wikipedia: "Leukemia (American English) or leukaemia (British English) is a type of cancer of the blood or bone marrow characterized by an abnormal increase of immature white blood cells called "blasts". Leukemia is a broad term covering a spectrum of diseases. In turn, it is part of the even broader group of diseases affecting the blood, bone marrow, and lymphoid system, which are all known as hematological neoplasms. Leukemia is a treatable disease. Most treatments involve chemotherapy, medical radiation therapy, hormone treatments, or bone marrow transplant. The rate of cure depends on the type of leukemia as well as the age of the patient. Children are more likely to be permanently cured than adults. Even when a complete cure is unlikely, most people with a chronic leukemia and many people with an acute leukemia can be successfully treated for years. Sometimes, leukemia is the effect of another cancer, known as blastic leukemia, which usually involves the same treatment, although it is usually unsuccessful. Leukemia can affect people at any age. In 2000 approximately 256,000 children and adults around the world had developed some form of leukemia, and 209,000 have died from it. About 90% of all leukemias are diagnosed in adults."
Ron Chiodo grew up in Cottonwood, and married his high school sweetheart after they graduated from college. He and his wife have spent much of their lives in the Washington, DC, area where he worked in various political and computer environments before starting his own software database development business. Ron and his wife split their time between Redding and Northern Virginia. They prefer Redding!
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