Wednesday, September 30, 2009
Sunday, September 27, 2009
We made a quick turn-around on Friday and then on Saturday morning we headed up to our small corner of heaven on earth at Huntington Lake. Sue felt pretty good all weekend and walked around a bit, visited a bit, napped a bit. Here she is inspecting the stump of one of the five trees we had professionally felled last week. This tree quite possibly will not be going to heaven. It literally has a black hole in it's heart. Maybe that's why the tree was weeping constantly. (Really, there was a constant stream of water weeping out of the tree.)
It's sad to lose a big tree like this. We're going to have it milled into lumber and, among other things, we'll be making picnic tables from the lumber to serve the guests of our cabins. You know, in some ways it's like this with people. Life sort of saws you off at the knees and you have to make adjustments to continue to be useful in some other way than you were before. It's either that or just give up and join the Harpers.
Postscript trivia: What is the difference between a "harper" and a "harpist?"
Thursday, September 24, 2009
The medication cutbacks have already resulted in Sue experiencing mild symptoms of pain (mostly the neuropathy in her lower legs and feet) and mild nausea. We are all relieved to know her confusion of late has been medication induced, and is probably not the result of a physiological problem. Our local team of caregivers will be in earnest conversation over the next weeks, together with Sue and her doctors, about setting medication levels that deal with Sue's symptoms while not sending her off on another magical mystery tour.
Meanwhile, the love is back at our house and we are all on our own Magic Bus. But that's a trip to describe another day.
Wednesday, September 23, 2009
What I have discovered is that there are a lot of people who have gone through a similar situation where a loved one is in need of medical care (and medications) and the nuclear caregiver family members (plus extended family and caring friends) are in some disagreement about how the care should be done. This, coupled with an already stressed family group, various disfunctions of communication and relating and problem solving, etc., has led, in many cases, to personal pain and relationship strains.
Thank you to those who have shared some of your painful experiences with me, as well as your concerns and insights. My post was not a clarion call of distress. Actually, I read the post to both of my daughters prior to posting it. Do they agree with everything I said? No. Will they ever agree completely with me? No. Do they know that I love them and that I am proud of them both? I'm pretty sure they do. I tell that to them often and it's one of the things I say that they do agree with as reasonable on my part. Is everything hunky-dory? Not yet, but that's o.k.
Was my post intended as a public trashing of those who disagree with me? Not at all. It was intended as an honest yet somewhat tongue-in-cheek look at a real situation we faced --which apparently is similar to situations some of you have faced as well. Did I own my own shortcomings? Well, some I did. This is, after all, my blog.
By the way, we (Sue, Jessica and I) did consult the local oncology doctor this morning and she has prescribed a significant cut-back of medications. Now where did I put my own pain and sleep meds? Ciao.
This isn't to say that the food served at the UCSF medical center wasn't good. I enjoyed it tremendously. Unfortunately, Sue, the patient, could hardly eat any of it. Nausea is practically a given with patients who've had a heavy dose of Melphalan (or other toxic chemo drugs). Diarrhea is also quite common. You would think a big hospital like UCSF medical center would have a special diet specific to the STC/BMT ward. You know, something like the Cancer Brat Diet.
Anyway, Sue's eating better now that she's home. Additionally, our team of cooks is working at getting on the same sheet of music. Or is that the same cookie sheet? Talk about mixed metaphors! We're getting together in some kind of sheet.
Tuesday, September 22, 2009
Now if Sue were firing on all cylinders this would almost certainly not be an issue. But don't be fooled by the fact that she was discharged and is now at home; she's got a lot of recovering to do before she's firing on all cylinders. In fact we are all concerned about her mild state of confusion. What we are not in agreement about is what to do about it. (Note: We'll ask the local oncology doctor in a follow-up appointment tomorrow morning.)
The disagreements center principally around the administration of the multiple medications the various doctors have prescribed, and are exacerbated by our differences in communication styles. One of the daughters insists the meds be taken strictly according to the doctors' orders. Her take-charge approach has harkened me back to Al "I am in control here" Haig. The other daughter has inferred a sinister belief that my lack of strict adherence to the medication orders may be a subtle plan to off my wife, and/or that my failure to strictly document every medication administered by me may be a subtle plan to have my daughters off my wife by having them overmedicate her. The patient, herself, periodically wants to refuse some of the medications and insists on understanding the name and purpose of each medication -- four times a day.
During Sue's stay at the UCSF medical center, the nursing staff and doctors were fairly quick to acquiesce if the patient refused a medication. Such acquiescence is consistent with the UCSF Patients' Bill of Rights, and in particular the patient's right of "participation in decisions about treatment options, benefits, risks and alternatives including appropriate pain management." The UCSF patients' rights document states: "We respect the rights of each patient. We are aware that each patient has unique and diverse health care needs. We encourage a partnership between you and your health care team. And we encourage you or your designated representative to participate in discussions and decisions about your care, options, alternatives, risks and benefits."
Note here that "designated representative" in the last sentence above is in the singular, and the right of participation is offered to "you or your designated representative." Imagine the fiasco if our "team" tried to participate with the health care team at the hospital (or locally) in discussions and decisions about Sue's care. I am pretty sure that "designated representative" refers to the patient's designated agent for making health care decisions in the event the patient is incapable of making her own decisions. In Sue's case, that would be me. But it points out one of the important reasons for making a thoughtful Advanced Health Care Directive (Power of Attorney for Health Care Decisions) before undergoing significant medical procedures. Well, really, you should make one in any case -- just in case. Who knows when you, or your well-meaning "too many cooks" team might need it?
I leave you with these questions: 1. Are doctors gods whose pronouncements are universally what is best for the patient? 2. Are pharmacological solutions always (or only) the best way to heal? 3. Who should be in charge of making medical decisions if the patient is lacking mental competence? 4. In the continuum between total pain and total incoherence (and assuming the pain medication is the cause or a significant cause of the incoherence), what is the most appropriate level of pain medication?
[Postscript to my several pre SCT blog readers: You will not be out of the woods when you get discharged from the hospital, and you will not be back to normal. Sue pressed for and received an early discharge, but irrespective of when you are discharged you will need a lot of support at home. This will be particularly true if you develop mental confusion or cognitive lapses, which I am learning are fairly common post SCT -- and which are compounded by the medications which will be prescribed for you. In any event, you will need assistance with administration of your daily needs, including medications, food preparation, shopping, cleaning, transportation to follow-up medical appointments etc. Oh, and be sure to prepare an Advanced Health Care Directive.]
Thursday, September 17, 2009
Wednesday, September 16, 2009
Thankfully Sue has lots of good friend support here. Nurse Debbie came over the morning after we got home and "organized" the medications. Neighbor Cindy took Sue to get her blood tested this morning. Nurse Debbie took Sue to an appointment with the local oncologist this afternoon. Jessica and Valerie have been supportive and attentive to their mom, who is very, very happy to be with them. Lots and lots of people are on standby to help, and Jessica will get them organized. Yes she will.
Monday, September 14, 2009
The Yelamu Indians once occupied the area now known as San Francisco. The Yelamu were one of approximately 50 tribes of Indians known collectively as the Ohlone tribes. The Yelamu territory included the area known today as Crissy Field, the place I’ve been jogging. They lived and thrived here in harmony with nature for several thousand years before the Spanish colonists arrived in 1769. Then, in less than 100 years the Yelamu became extinct.
Adam Johnston, an Indian Agent during the westward expansion of the United States, took it upon himself to interview a number of Indians from the disappearing tribes. In 1850, the year California became a state, Johnston interviewed Pedro Alcantara, the last known Yelamu. Alcantara was born as a Mission Indian (the Mission now known as Mission Dolores) in 1780. At the time of the interview, Alcantara was 70 years old. Here’s some of what he said:
“I am very old. … My people were once like the sands of the shore … many … many. They have all passed away. They have died like the grass … they have gone to the mountains. I do not complain. The antelope falls with the arrow. I had a son. I loved him. When the palefaces came he went away. I do not know where he is. I am a Christian Indian. I am all that is left of my people. I am alone.”
We too, Sue and I, are leaving this land of the Yelamu today. Hasta la vista, Yerba Buena. Sue is being discharged today. We are going to the mountains.
P.S. Sue's numbers today have gone through the roof. Her WBC jumped from 4.6 yesterday to 11.2. Her ANC jumped from 4.3 yesterday to 9.96. One of the criteria for discharge from this hospital is if you have an ANC count of 1.5 or more for three consecutive days, or if you hold an ANC of 5 or more for one full day.
Sunday, September 13, 2009
Sue was remarkably upbeat today about the haircut. She felt much better today than yesterday. Her numbers were so good the medical staff thought there was a mistake, and they re-ran them. Her white blood count (WBC) went from .2 two days ago to .9 yesterday to 4.6 today! Her absolute neutrophil count (ANC -- the important one) jumped from .59 yesterday to 4.03 today! The afternoon tests confirmed these fantastic results.
At .59 ANC yesterday Sue was no longer neutropenic in the dangerous sense (less than .5). Today Sue is not neutropenic in any sense (neutropenia being, by definition, an ANC of less than 1.5). So mask precautions are done. Boy is Dr. Woof glad.
Thank you all for your continuing prayers and moral support. A heavy load has been lifted from Sue's head (heh heh heh). I think I'm going to start calling her the "hairless chi-mama."
Saturday, September 12, 2009
We rode downtown on the N Judah. The conductor stopped the train in one of the underground tunnels and we were stuck there for about a half hour. Some drunk guy had wandered into the tunnel and fallen asleep right by the tracks. It took about 25 police officers and MUNI officials to sort it out. Meanwhile, they shut down the N Judah, so we had to walk to the nearest MUNI station and get on a different MUNI to get to Powell Street (Union Square).
It was a nice father-daughter outing. We went into the big shopping mall on Market (something Plaza, I can never remember the name of the place even though I've been there a dozen times) and bought a few things: some Vera Bradley note cards for Sue (in case she ever feels well enough to write some notes); some scented Bath and Body Works hand gels (mmmm, nectarine mint, my favorite).
There are a lot of stores selling a lot of pretty and shiny new things in San Francisco. There are also a lot of people here who can afford all that stuff. Pretty people dressed to the nines. People who drive B-Mers (BMWs), Lexuses and Mercedes Benzes. On the other hand, there are a lot of homeless and down and out people who can't afford a cup of coffee. Well, the good kind of coffee, anyway. You know, the kind Bruce Porter insists on having. The kind of which there's a plethora in the City.
You see these down and out people all over. At night or in the morning, and sometimes during the day, you see them rolled up in blankets on the sidewalk, blocking the doorways to stores and houses, sitting or sleeping in the parks. You see them coming into and out of the emergency room at the UCSF medical center in ambulances with their grubby, bearded, unwashed faces and their ragged clothes. Wow, such a contrast between the haves and have nots.
There was a pretty good thunder storm here last night, and a fair amount of rain. We're still getting some rain today. I'm sure the rain is a hard thing for the homeless people to deal with. But it washed the City down, watered all the plants, refreshed and renewed the City.
It's a mystery how, even amidst the glitz and allure of non-life-giving things, and amidst the decay of live's gone astray, and amidst the decaying and water starved land, and amidst those who are suffering from chronic illnesses and conditions, God is constantly making things new again -- refreshing, restoring, filling us up with pure, life sustaining water.
Revelation 21:5 And he that sat upon the throne said, "Behold, I make all things new." And he said unto me, Write: for these words are true and faithful.
P.S. Sue isn't feeling as good today as she did yesterday or the day before. But her numbers are up considerably. Her white blood count jumped from .2 to .9. Her ANC jumped from .1 two days ago (no measurement from yesterday) to .59 today!!! This means she is no longer in the critically neutropenic stage (ANC below .5). Indeed, He does make all things new, though we don't always understand the process.
Friday, September 11, 2009
The fog was heavy at the entrance to the bay, and all night long the fog horn was going off. Think of a loud nasal base monotone: Bouououououou. (short pause, then:) Bououououou. I've grown accustomed to it and it's comforting. It bothered Jessica a little.
So in the morning I told her the poem the dean of my law school recited to the first year law students while we sat in an assembled and numb mass near the beginning of that multi-year ordeal. I've remembered it from that first recitation. It goes like this:
Light house, him no good.
Him flash lights,
Him sound horn,
But still the fog comes.
Dean Schraber likened the light house to the professors, and said they will do their best to flash their lights and sound their horns and lead us to knowledge of the law, but to be sure, the fog will come upon us. But he encouraged us, as well. The fog will lift, and we will clearly see what was once hidden.
The fog of desperation seems to have been lifted off of Sue. Her visit with Jessica today was a great encouragement. She's been feeling much better and sleeping better. Debbie Friesen is coming for a visit tomorrow, and Sue is looking forward to that. "Visiting" hour upon hour with a husband is o.k., but a visit from a lady friend has a certain appeal to a woman. Debbie's visit appeals to me as well, because during her visit with Sue, Dave Friesen, Matt Friesen and I will attend the Giants vs. Dodgers baseball game. Goooo Giants! (Did I just say that when I know there are some Dodger fans reading this blog? Oh well, the Dodgers beat the Giants up yesterday. I'm not a rabid fan, but hey, this is San Francisco.)
So I won't say that Sue is happy, but I can say with assurance that she is happier. Her smile is back, though not yet constant. Bououououou. Bououououou. I think I see the sun peeking through that fog.
Thursday, September 10, 2009
Having been woken up repeatedly the night before by Sue's desperate calls for me to come and get her out of the hospital, and having gotten up at 4 a.m. to get down here to just be here for her and do what I could, I was tired. Well, o.k., nearly exhausted. I figured if I didn't get a good night's sleep I was a candidate for a cold, which would render me unfit to even come onto the floor at 11 Long, much less be a physical or emotional support for Sue.
The night started badly, with multiple interruptions from medical staff, housekeepers etc. Sue was also restless, nauseous, etc. and unable to sleep. I was trying without success to sleep on a conglomeration of two uncomfortable chairs. I figured I was doomed. I figured we were both doomed. I prayed for sleep and renewal and protection from sickness. Then, mercifully, peace came over the room and both Sue and I were able to sleep. I woke up at 6 a.m. refreshed and renewed.
Because of the preceding three days of nausea and diarrhea, the medical staff required that Sue's True Blue quilt be laundered again. I took the opportunity to do all of her laundry, and mine as well. While I was at David's apartment picking up my dirty laundry, I figured it would be well to get in a little jog. I wanted to put my hands on Hopper's Hands because I felt like I had figuratively been part of an effort to keep Sue from a suicidal "jump" from the hospital bridge while neutropenic.
The jog turned out to be a good idea. It was a beautiful sunny day in the City, with blue skies and sunshine covering the inner Bay and a low fog sneaking in under the Golden Gate Bridge, just under the famous orange suspended roadway, and then dissipating. As I jogged along the path above the beach at Crissy Field, this verse came to me: Isaiah 40:31 "... but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
I did grow weary, though, jogging into the headwind blowing into the bay from the Pacific. It made me think of the Tour de France, and how the riders form a peleton to cut the wind and preserve their energy. The peleton riders do all the heavy work for the star riders, so that, at the end of the race, the stars have the energy to dash away to the finish and claim victory. I got choked up thinking about how all of you who have supported Sue through her previous chemo treatments and medical appointments and who have supported her physically and emotionally and spiritually to this point, and who continue to support her, have been my peleton. Now, like Lance Armstrong, I am ready to charge up the final hill and claim the victory.
Except it wasn't Lance Armstrong who claimed the victory in the recent Tour de France. It was his teammate, Alberto Contador, who won. And I am like all of you, just part of the peleton for Sue, cutting wind and preparing the way for her to claim the victory over this cancer. We're a mighty good team and I'm proud to be working with you.
P.S. This has been a much better day for Sue. I think she's turning the corner. Keep up the prayer work, peleton people!!!
Wednesday, September 9, 2009
Today Sue has said on more than one occasion she will never do this (stem cell transplant) again and she would never tell anyone to "follow her" down this road. [If you are considering a stem cell transplant, stay tuned. I don't think this will be the last word. But for now, it's where she's at.]
Last night Sue reached an emotional low after three consecutive days of nausea, diarrhea and pain. Three days of neutropenia. The drugs, and there are a lot of them, have also left Sue a bit confused. After I left last night, Sue got focused on a new plan and didn't sleep much. I left the hospital at about 9:30 p.m. and got to sleep around 11:00 p.m. I got the first call from her around midnight. Between midnight and 4 a.m. she called 3 more times. She wanted me to go down to the hospital and get her out of there. Being sharp and astute, I sensed an emotional crisis brewing. I got up with the 4 a.m. call and came down to the hospital.
I got here at 5:20 a.m. and had to go through a security screeing to get in. Sue was intent on being discharged today and going home to recuperate. I told her I wasn't a medical professional and I couldn't make that call, though I knew it was an absurd and impossible notion. She insisted on having and holding her cell phone so she could call her friends for support for her plan. I had to stop her several times from calling all of you support ladies at 5:30 a.m, so you can thank me later for that. She called nurse Debbie and nurse practitioner Jennifer in Fresno at about seven-thirty to run her plan by them. Rightly, they did not support her plan to be discharged at the lowest point of neutropenia -- at a time when she is getting 24 hour care from top medical professionals.
The doctor came in at 9:30 this morning with a bad news, good news approach that settled her down a little: The bad news was that she wasn't going home today or even this week. End of story. Stop thinking about it. The good news was that her numbers are just starting to go up today. Her white blood count doubled from 0.1 to 0.2. That means the stem cells have embedded in the bone marrow and the bone marrow is starting to work again producing blood. He predicted the numbers will go up a little bit again tomorrow and then start rising rapidly. He predicted she will start feeling better each day from here on out to her discharge. Da Vinci couldn't have painted it better. Just the right combination of firmness and hope.
Vuon Le from Viet Nam posted a touching comment to this blog a few days ago. She had great and timely words of wisdom for me which have been of some good effect. She said: "Give her much more love, dear. And think that she is happy with u. That is all we must do to her. I'm sharing the feeling with u. May Gods bless u and all of us. Just let her feel the warmth of ur hands very time her heart beats. Give her my best regards. A friend from Viet Nam,Vuon le"
Tuesday, September 8, 2009
Monday, September 7, 2009
It's an absolutely gorgeous labor day in San Francisco. Too bad this ain't no picnic.
Sunday, September 6, 2009
The N Judah approaches the boarding platform in the Muni station. One bored girl eyes me suspiciously.
Saturday, September 5, 2009
Friday, September 4, 2009
The left column shows: WBC - White Blood Count; ANC - Absolute Nuetrophil Count, which is a subcategory of the white blood specifically critical to/responsible for the body's immunity system; HCT - red cell count; and Plat - platelets. They monitor a lot of things here, vitals, urine, stools, how you feel about everything, emotional state, etc etc. -- but these blood counts are the ones the doctors watch most closely.
They administered the Melphalan late on Sunday 8-30 (between 10:30 and 11:30 p.m. The counts on 9-1 were post Melphalan and by that time the bone marrow had basically shut down. On 9-2 they intravenously gave Sue back her blood which had been previously harvested and frozen. That brought her counts back up for a day. The next day (yesterday) the counts were dropping rapidly again. Today the WBC and ANC counts are pushing on toward zero.
ANC is the critical number the docs watch. My source for medical information, Wikipedia, discusses Neutropenia. According to my source,bolstered by a teaching session by Nurse Jennifer, when the ANC drops below 1.5 the patient is mildly neutropenic; When the ANC drops below 1.0 the patient is moderately neutropenic; and when the ANC drops below 0.5, the patient is fully neutropenic and at severe risk of infection. They expect that to happen in the next day or two.
Think of Sue's condition like this. Her white blood cells are in the white blood cell killer roller coaster called BIG MEL. They've been over some of the low easy drops and curves. Now the car carrying the while blood cells is grinding to the top of BIG MEL and it's time to get a little scared because pretty quick its ... going ... to ... droooooop reeeeeealllllllllly faaaaaaasssssst!
Picture two one-man sculls, shadowy slivers in the bay, being rowed across the calm water by their shadow-men. A lone paddleboard rider was paddling along the shore. The pier was occupied by seven of my kindred spirits -- fisherman out to greet the day. The usual cacophony of birds joined the scene, together with the early-bird walkers and joggers.
And I was both elated and frustrated. I've got a few aches and pains and I haven't been able to break through the endurance plateau that's capped my progress. I want to run a half marathon in the Two Cities' Marathon in November, but if I can't progress past this plateau that isn't going to happen.
Then it dawned on me how stupid I am. Sue is lying in a hospital bed and she can't walk the 100 yard loop around the hallway of 11 Long without feeling nauseous. She choked up with tears at every card she opened today. She said she thought this would be easier -- like the chemo treatments she got in Fresno. It's been hard. Harder than she thought. And she's one of the lucky ones. There are some people up here who are critical, clinging to life by a thread.
But that's the way it is. No matter who you are, or where, there are always going to be some who are better off than you, and some who are worse off. You want to progress to the next level, but sometimes you get pulled down. Eventually we all do.
And so it is good to remember that our life here, and our accomplishments, are temporal. Percy Shelly wrote it well in one of my favorite poems, Ozymandias.
I met a traveller from an antique land
Who said: "Two vast and trunkless legs of stone
Stand in the desert. Near them on the sand,
Half sunk, a shattered visage lies, whose frown
And wrinkled lip and sneer of cold command
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed.
And on the pedestal these words appear:
`My name is Ozymandias, King of Kings:
Look on my works, ye mighty, and despair!'
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare,
The lone and level sands stretch far away".
A sign on the back of the robot reads: "CAUTION: Do Not Enter The Elevator Or Ride In The Elevator With This Robot. For help with this Robot call the Blood Bank." They use this robot to transport blood to the nurses' stations. I couldn't get the Blood-Bot to stand still for pictures.
Thursday, September 3, 2009
On August 29 I posted a blog about Cole Hardware titled "We Saw A Grate Light." The owner of Cole Hardware, Rick Karp, saw the blog and posted a very nice comment. The blog included a picture of some unusual lights in a window display which were made out of hand-held graters. Turns out the lights were custom made by a Cole Hardware employee, Noelle Nicks, who worked as an engineer in a previous life, and who is currently in charge of displays and merchandising for the four Cole Hardware stores in San Francisco.
In his comment to my blog, Mr. Karp offered to have some of the lights made for Sue. She said she wanted some, so I called today at about 10 a.m. to speak with Mr. Karp. I spoke instead with his chief assistant, Julia, who claimed that Mr. Karp doesn't really have an office or a desk. I left a message thanking Mr. Karp for his kind comments and advising that Sue did want some of the grater lights, and also that I would be willing to pay for them.
At about 1 p.m. today a package was delivered to Sue at the hospital by two Cole Hardware employees; the package included three grater lights, three colorful Cole Hardware helium balloons, a card which said "May only grate great things happen for you!" signed "From Your Friends At Cold Hardware" and a black Cole Hardware hand bag.
The bag has the Cole Hardware logo: "Cole. Hardware for the soul."
We affirm that. Thank you Rick, Noelle, Julia and Cole Hardware. You have indeed delivered hardware for the soul.