Personal bout with Leukemia! Chapter 1

It’s only been a few days but so much has happened that I may have lost track of the sequence. Even finding time for me to run to the toilet was difficult as I did not want to miss out on anything and there seemed to be no break in the hectic activity. What breaks did come were needed for sleep. This is my best recollection of the saga:

Tuesday, the 15th, Dave and I went to the YMCA, in Gig Harbor, WA, where they kindly allow the free use of their showers sans membership so long as you leave them your photo ID as collateral. We enjoyed the luxury of a joint shower in one of their family shower rooms and it was there that I got a good look at a spot on Dave’s thigh that was swollen, red, rough, and quite angry looking. He had thought it was just another varicose vein in the making but this one was way north of all the previous ones and looked quite different.

That plus a couple of other concerns like a low grade fever (102?) led us to see if we could get in to see the doctor while there. It just so happened that we were only a couple miles away which is not the norm. Yes, the Nurse Practitioner could see him at 3:30.

At 3:30 Dave donated yet more blood to keep the lab technicians busy, and the NP ordered an Xray and an ultrasound, as she was, indeed, concerned about the situation. It was too late in the day for those, however, so we found a place to spend the night and wait. Called Elaine (a dear friend and nurse) and apprised her of the development. She expressed shock that we weren’t directed to the ER, which puzzled us. We were still too naive to understand or feel that the situation was critical.

He wasn’t feeling that poorly. She told us that if we refused to go to the ER right away, then at least talk to the Doctor (as opposed to the Nurse Practitioner) ASAP and to go to the ER if anything else came up.

Come morning, on Wednesday the 16th, he was feeling the best in several days, with the low grade fever gone, but we followed her instructions. So at 8:00 AM Wed we are at the Dr.’s office – but he won’t be in until 2 PM! We were talking to the nurse when the Nurse Practitioner showed up and said she had gotten the lab results and his WBC count was sky high – 148, if memory serves, which was higher than she had ever seen — when it should be in the range of 3 to 10! — and he needed to go to the ER STAT. So 15 minutes later we’re there, at St. Anthony’s ER. They needed more blood labs, so they put in a venous catheter taking the needle out but leaving a tube in which minimizes the number of pokes needed and enables more freedom of movement of the elbow. It also has two ports so that they can infuse and withdraw at the same time.

This was much appreciated at the time. However, there was an important flaw. The butterfly handle on the outside of the device (not the “needle”) was located in such a way that every move of the arm jabbed him, hurting at least as much as another poke!

Also, the location was such that the hose was constantly being kinked, hence obstructed, triggering noisy, sleep destroying alarms, and by then Dave was feeling pretty bad on several fronts. Making it difficult to sleep was really annoying. The Doctor and staff were all very solicitous and helpful. The upshot was that they wanted to transfer him to UW Medical Center but had to wait until a bed was available. WBC (white blood cell count) was down to just over 100 and he was still feeling up to the trip to Seattle despite being tired and sleep deprived and the doctor did not object much to our suggestion that we drive ourselves. We stupidly had the feeling that the crisis had already passed – obviously they knew better.

So we left the ER and headed to Bremerton to catch a ferry. Guess we weren’t thinking worth beans, as it would have been a lot faster to go by way of the Tacoma Narrows. Especially since a ferry was just untying as we got into the parking lot after buying a ticket! Hour and 15 minute delay plus an hour ferry trip. Even at that point it would have made sense to turn around and go the long way. But my brain cells hadn’t kicked into gear and I was still going by the logic I followed back when I used the Bainbridge Island Ferry. From Bainbridge it is far longer driving around and only a half hour ferry trip which makes changing plans in Bainbridge pointless, but that wasn’t true at Bremerton.

I had a bit of PTSD on the Ferry, realizing that my actions were delaying his treatment, just as they had when Gerhard landed in the ER back in 2010, but we did finally arrive at UW at 6PM, were he was admitted. Then began all the tests and procedures that made it a sleepless night.

Dave’s energy and comfort level had dropped back down again by the time we got to the ferry dock in Bremerton and I think his temperature was back up again as well. It didn’t rebound again but he was still ambulatory when we got to the UW. As said, a sleepless miserable night of feeling very ill and worried and PTSD from his wife’s lost battle with Cancer at that same hospital -although a different part.

Thursday, they started giving him Hydrea to bring the white blood cell count down. A count that had gone from 150 ? at the doctor’s office to 100 ? at the ER back up to 150? again. Up and down.

Fever coming and going. Diagnosis tentatively AML. (Acute Myeloid Leukemia).

The day (Thursday) was much quieter and he was able to catch up on much needed sleep. Lack of it sure doesn’t help with healing.

We were worrying about what to do with Riva during Saturday’s UW Game when the S1 parking place needed to be vacated. Parking for patients and staff still available in the garage but Riva won’t fit down there. We called around looking for options but it seams these days no one ever has the authority to make exceptions to rules. Vehicle (belonging to an inpatient at the hospital) too big to fit downstairs? Too bad. No RV’s in Event Parking and no other place available.

Thursday night is forgotten. Probably a rare experience of sleeping despite interruptions.

Friday: Diagnosis amended to T-ALL, an aggressive form of Leukemia that is ‘common’ in children but rare in older people let alone his age. We were told about a study that he could participate in which the doctor thought would give him a decent chance of success whereas the best existing alternative only had about a 40% remission rate. She needed a consent signature in order to do a preliminary test that evening and to seek insurance approval – or lose the entire weekend. Still new to the need to face the prospect of filling his body with poisons and they wanted us to make a decision by Saturday morning – after signing up on Friday for the sake of the test. He could still back out, but that didn’t change the sense of pressure. The diagnosis was also confirmed – after the consent forms were signed!. And Medicare approved the participation in the study.

Also after signing the consent forms and feeling horribly pressured to make sense of options and pros and cons (even though they are not really knowable) and make an actual decision as opposed to signing papers, Dave used a pendulum to ask his sub-conscience (intuition, universe, what to do. Pendulum said yes to participation in the study and yes to alternative adjunct efforts in addition. Go for it. Decision made.

Friday night was another bad one – the worst. They gave him some antibiotics that pretty promptly made him nauseous and it took 3 tries over a couple of hours to find an anti nausea drug that worked. Back and Rib pain was also out of control. A feeling of suffocation, of not being able to get enough air, added to the distress. I think at the time that he had no fever but off and on fever and chills certainly didn’t make life more enjoyable. The mattress has a big depression in it (between the creasing from sitting the bed up and the concentrated weight of many a butt) that didn’t help the back and rib pain. Between the three and the subsequent lack of sleep and fear and pressure it all added up to feeling it was not worth the struggle. He felt that if he could have pushed a button to end the torture, he would have done so. The nausea alone was torture that made any relief worth considering.

Yet another issue was the IV catheter that had been put in at St Anthony’s ER. UW refused to remove it despite his complaint that it was hurting. They were stuck in the mindset that they needed it for an emergency port. It took persistence to get through to them that a replacement would be welcome! They had refused to remove it under the impression that sticking yet another needle into him when that was already there would be undesirable. But replacing it would only require one poke and the current one felt worse than dozens of pokes!

Saturday morning, with Dave still very depressed, I had to drive Riva (our RV) to Greenwood Park and Ride and return by bus. The day that followed was super busy.

During Rounds, we expressed frustration with the failure of palliative care – talked about pain, shortness of breath, nausea, the need for options, attractiveness of suicide. That last word got a reaction. They finally seemed a lot more concerned about solving the problems rather than dismissing them, albeit with plenty of compassion. So, on Saturday he got a better oxygen delivery system. Before, they had just said, “sorry, we don’t have any other option.” No solution to the depression in the bed – “sorry, nothing available.” Questions we were told to put on the board so as not to forget them, were never read. Until that word ‘suicide’.

Then they read the list and responded. They got Palliative Care to come. They got a mask from somewhere else in the hospital. I found a way to fill the depression in the Mattress with folded blankets (plural) for a partial solution.

Palliative Care actually listened for a couple of hours and offered Reiki – except it’s now the weekend so who knows when.

Dr Becker looked like the cat that swallowed the canary when Dave assured her that he did want to proceed with the study, despite the distress of the previous night, which had probably been heightened by the impression that Chemo could make it even worse. He just needed assurance that more would be done to make it tolerable and that there was an escape possible in extremis.

Despite all that, Chemo was begun Saturday afternoon. That night was so so. Got some sleep. Had some episodes with shortness of breath and one time got into a hyperventilation/anxiety loop. We had talked a lot about pain control but they had not caved and would not agree to PCA (Patient Controlled Analgesic). So we let that go for the time being. Got 5mg of some opioid at 3:30 (Sat) – about an hour before the chemo started. with another 5 allowable 4 hours later, but not needed at that time. At 9:30, 6 hours after the first dose, he asked for a half dose and got 2.5 mg. Pain and nausea under control. Main concern is still O2.

We finally put 2 and 2 together and realized that there is plenty of O2 in his blood. The problem was not improper processing of air but the volume of air he could inhale. He had the sensation of not being able to expand the rib cage thereby constricting the size of the breath he could take. The chest Xray had shown some calcification in the rids which would indeed tend to lock them. The bed wraps around the torso, squeezing it and adding to the problem. I am unclear as to why we all didn’t get him into the chair days ago and can only figure that, with all the IV’s and such, it seemed too energy consuming to go back and forth – or remain sitting up for any length of time. Whatever it was, no one even suggested it, not I, not Dave, not the nurses, nor the Doctors. In addition, the meds have added 4.3 kg to his weight and they seem to have mostly gathered in his abdomen making it swollen and further restricting the expansion of the lungs.

Eerily, the last thing Gerhard ever said to me was “I can’t breath, there is no room.”

So this was the main subject of Sunday’s activities. A CT of the torso – Dave wanted maximum bang for the buck. If they had to do a contrast dye CT they might as well look for everything conceivable and not limit it to just one concern. They were willing to do so.

We started the day planning to walk laps since the exercise is so beneficial but it is amazing how many things get in the way and keep us occupied. It was after 2:00 and after the CT that we were finally able to walk 3 and a half laps. 9 laps equals 1 mile, reportedly.

After the CT was analyzed they gave him a diuretic to reduce the abdominal swelling which should help the breathing. No effect. They seemed to think that it was working, but he had peed slightly more in the 4 hours before the diuretic than the 4 hours after. That doesn’t sound to me like it did anything.

All in all, however, despite being on the cocktail of poisons, he is feeling optimistic and less ill than the previous few days. I still find it strange how fast he went down. Wednesday morning (when he went to the ER) his complaints had seemed minor to those of us with no understanding of the issues, nor was there any fever. Yet his white cells were multiplying at an alarming rate and not only failing to do their job of protecting him from infection but causing damage of their own. Elaine had tried to warn us. She had told me that his health could vanish in as little as 5 days and why the two doctors didn’t tell us flat out that we would be unwise to go to Turkey made no sense to her. Perhaps it was just a communication problem, but neither of us got the message that this was truly serious NOW.

It reminds me of the time, way back in 1974 that Gerhard was given an antibiotic for an infection but quit after feeling better before finishing the bottle. Then he got a sore throat and used the remainder to try to fix the sore throat. That is a huge no-no that we should have understood. Antibiotics that don’t get to finish their work can breed stronger bugs.

In Dave’s case, his white blood cell count was low, but somehow we did not translate that to a high risk of infection due to a weakened immune system. I think we were figuring that he was and had always been one healthy guy and a low count just meant a mystery as to why the marrow wasn’t producing as much as usual. No one flat out said “a low WBC means that he is no longer safe from the infections he has always avoided in the past. This HAS to be dealt with.” We were not equating volume of cells with risks. Why not? I wish I knew.

Despite all that, Chemo was begun Saturday afternoon.

Sunday night Dave went to pee while I was on the phone and had to abruptly cut off the call because he was peeing blood! That, of course, led to more tests to try to find out what was causing it. They were quite worried about the potential for DIC (?) clotting/bleeding disorder where the blood can’t seem to decide which to do where and preventing it from occurring. He was given platelets since his own are too few and wherever the source of bleeding might be, it needed to clot. Hematocrit high enough to not need blood but they are keeping a close eye on it.

Monday was extremely busy. They also have been running extra checks on his heart and lungs. They didn’t like it when his heart rate got down into the 40’s. Dermatologist checking on everything.

Social worker came to give information about housing during outpatient times, someone else came to talk about spiritual viewpoints, someone else FINALLY brought a replacement mattress, (Hallelujah!), others came to help with cleansing since showering is a pain during the chemo There were blood draws for labs, frequent vitals taken, the “rounds” of course where the doctor and her students come briefly, we were also putting in calls for this need and that and it was simply nonstop activity. Occasionally more platelets and whole blood, and all sorts of other stuff. All that fluid has pushed his weight up from 98.5Kg to 104.5! That’s a kilo per day average for 6 days! A stronger dose of diuretics made made him pee about a liter every 2 hours so the weight gain would have been even more without that. One good thing is that the holding volume has increased quite a bit and the ease of voiding also.

19:15 at the moment Monday evening, Oct 21, and no hallway laps yet. Waiting for supper. Want to make phone calls but also want to sleep.

1 thought on “Personal bout with Leukemia! Chapter 1

  1. Dave, Dan and I are sorry to hear this terrible news. We are sending positive thoughts your way and wish you the best with your treatment. We will continue to read your blog page to keep up to date.

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