I have no energy to edit the following addendum to our bout with Leukemia. Apologies for any inconsistencies, errors, etc. This was completed and first Posted about Nov 4.
So, where did I leave off? I talked about nausea, pain, suffocation, emotions. I also talked about a shortage of sleep which is pretty much standard. When receiving blood products they have to be given sequentially in case there is a reaction, otherwise they would not know what the source of the reaction is. In a full blown emergency, they can give them together, but they won’t otherwise. In order to check for a reaction they take vitals, then start the drip, then 15 minutes later, take vitals again.
Because, with Leukemia, the chemo needs to destroy all the cancerous white blood cells (no ability to date to target only the malignant white cells), all the other blood cells also get destroyed. Hence a huge demand to replace the various blood factors and be sure that the body can both clot when needed and not clot when it shouldn’t, and carry oxygen, and do all the other things that blood does. Between the demand for lots of blood components as well as whole blood, the need to do it sequentially, the need to monitor for reactions by frequent vitals checks, when oh when is sleep supposed to occur?
As if this all wasn’t enough, add in the weight gain caused by the medications and multiple liters of fluids which then require diuretics to ensure they continued on through and out after doing their job – you have the kidneys and bladder working overtime and urine being produced and voided at the rate of about one liter per hour at times – one hour it was 2 liters! Again with such frequent trips to the toilet, when oh when is one to get any sleep? A catheter is contra indicated due to a) risk of infection, b) difficulty getting past an enlarged prostate, c) risk of bleeding. Somehow, a condom catheter was discussed and dismissed – not sure why.
As mentioned before, there are other interruptions as well – for tests, for eating, for communication, for showers, etc. etc.. For the most part, hectic times would get interspersed with somewhat less hectic times and some catching up on sleep could occur. At least twice, however, there was no respite and serious sleep deprivation resulted. Sleep deprivation is used as a form of torture, so it is not some minor inconvenience.
I’d better log events if I can – comments can wait till later. Wednesday the first chemo barrage of 24 hr times 4 days was completed 16:30 PM. It was followed by another hour of a different chemo. Thursday was spent infusing products to ensure that he could handle the lumbar punch/spinal tap in which they removed fluid to test for hidden cancerous white blood cells and replace it with chemo to attack any hiding there. They were in a hurry to get everything done in time for him to be discharged Friday with a Saturday outpatient visit to SCCA (Seattle Cancer Care Alliance) for the standard assortment of lab tests to see how the blood levels were holding up, infusion as needed, and a long term growth hormone injection to help the marrow rebuild the blood components.
Things kept getting set back and delayed and we worried about getting the growth hormone on time since if that didn’t happen then it would be daily injections instead (something to do with bean counter rules!) and we did NOT want to have to come every bloody day. In the end though, it all worked like clockwork. I got the room temperature up from 69 to 75 while he had an extra big bag of platelets, took a shower as soon as done and, just as he finished, the lumbar punch team showed up. It went smoothly and just as they finished, Ken showed up to give Dave some “bio-energy” which helped him sleep. It did not, however, overcome the complications from lying on his back for 6 hours as recommended after the procedure.
On Friday, after getting all his outpatient meds, instructions from the pharmacist regarding same, a visit from the nurse about other instructions for outpatient caveats and care, a last minute visit to the heart department for a mobile recording monitor, and I forget what else – after all that, we finally made it out the door to Riva at 5PM. We had made arrangements to stay at a cousin’s place down in Federal Way but that trip down took about a hour and twenty minutes – considerably longer than the desired one hour maximum. In an emergency, that commute time could be critical. So as much as Pierce was helpful and hospitable, we decided we needed to be closer. So Saturday morning we showed up at SCCA had the labs done, which were all within parameters, meaning no infusions needed. Got the growth hormone shot. Complained about peeing and pooping problems and sleep deprivation, and were assured that it was normal and would lesson with time.
I had paid for parking until 3:30 since I had no clue how long it would be, so Dave settled into bed aboard Riva while I sought info about parking/lodging options. 227$ per night nearby plus 30 something for parking! Or 85 per night but not available until mid November plus two sets of stairs to climb as there are no elevators! The other options I checked on were also not feasible. Luckily for us, Pierce’s brother James took over and provided a place North that was closer to SCCA. The cost savings is the least of the benefit, of course. Most appreciated is having additional emotional and logistics support. A car instead of an RV to get around with and park has also taken a huge weight off our shoulders.
On the way to James’ place I got some groceries and did a fairly lousy job of ensuring that everything was located where it could be reached.
The peeing and pooping problems only grew during the night adding to the already existing sleep deprivation. Sunday morning we called SCCA and cried uncle. Toughing it out through expected normal side effects was not working. We needed help. Instructed to come in. Obvious suspect was a urinary tract infection but the tests came back negative. So they said to go to the ER and see a hematologist and a urologist – together. Fat chance. We have been at the ER for 4 and a half hours and have seen neither. The ER doctors have done a whole bunch of tests – ultrasounds, CT scan, x-ray, blood cultures, and I don’t know what else. They have arranged for him to be readmitted at the same floor as before but I gather they are waiting for a bed.
While he was getting the CT scan, I called James and got an offer from his sister Pam to come hold my hand. I would have expected to say I was fine, but the offer made me realize I wasn’t. I, too, have been sleep deprived, running on adrenaline. `So she is bringing things that we might need, so far as I could identify from a distance. We will need to put together a suitcase of all the essential stuff, to be easy to locate and grab – like pregnant women do when approaching the birth date.
Saturday night through Sunday night and into Monday morning, it was all sympathetic useless suggestions except for word that they believe it is a kidney infection with urethra inflammation – near as I understood it. New additional antibiotics to hopefully correct it. In the meantime, it was still a strong urge to pee every 20 minutes, with only pain and a bit of pee to show for it. No bowel moving at all. No sleep worth calling that. I’m surprised he isn’t hallucinating from lack of REM sleep.
Only when the “Team” showed up in the morning did a lengthy list of medications get added to deal with general pain, bone pain, kidney pain, urinating pain, heartburn pain, and ulcerated mouth pain, plus constipation. The list, however, still had to be run by the pharmacist to check for contraindications, so relief was still a ways away.
Finally got the onslaught of new meds and there was a reduction in symptoms well short of cessation. The gap between urges did lengthen to 50 minutes, so that helped some what.
Ken, from bioenergy, came about 4 pm (Monday) and helped Dave fall asleep. I think he was here about an hour and Dave slept till 6. About two hours in one stretch – the longest for several days.
Pam came, enabling me to catch up on my own sleep and vent some emotion. Her visit with Dave perked him up and brought life back to his voice from the depressed monotone it had become.
All in all, he is still in pain but no longer talking about agony. Still having difficulty peeing and too close together. The good news is that his vitals remain good and even his blood components. Today he is being given platelets but nothing else is needed in the way of blood products. Plenty of anti this and that.
It is now late Saturday the 26th, and I have not kept track of what happened since Monday.
We’ve been in a sort of holding pattern attempting to get better control of symptoms and, hardly surprisingly, tackling new ones. They had offered “magic mouthwash” for the mouth pain and told him to swish and swallow. He tried it twice and said, “no more.” It seemed to coat the epiglottis with thick numbing slime and he felt like it could get into the lungs and suffocate him. No thanks! So next morning the mouth pain worsened to the point that he could not swallow or talk and was seeking another option. Wait till after the shift change, then there would be time to address it. Then it was wait for the Doctors’ rounds. That didn’t happen till 11 or so. Magic Mouthwash was again recommended but with swish and spit instead of swish and swallow. We’re dubious, but nothing else was offered. This is rather scary. A bunch of medications he needs for other issues are apparently only available in pill form – not IV, so if he can’t swallow then what? So we wait for the orders to get written, sent to the pharmacy for cross checking for contraindications, then wait for the delivery to the floor, then wait for the nurses to deliver to the patient. He finally got the new swish and spit version of Magic Mouthwash at 2:30 in the afternoon, having first complained at 6AM!!!
To add insult to injury, no one has convinced me that it was any different than the original swish and swallow. The bottle labels were identical except for the directions for use. So he finally tried it and half an hour later was finally able to painfully swallow meds. I don’t remember how the intervening meds were dealt with. Maybe the difficulty came and went and he managed to get them down despite the pain. After the swish and spit he said the pain had come down from an 8 to a 4 or 5. I hadn’t realized it had ever been that high.
Meanwhile, still no bowel movements. They were throwing half a dozen different laxatives at it, including something to promote movement as opposed to just softening stools. That is probably what finally helped, because one or more of the chemo drugs is a neurotoxin which can shut down the peristalsis action. It doesn’t matter how liquid the stools are if there is nothing to move it along. Funny how people will ask “when did you last have a bowel movement?” First off, they don’t define the term – what exactly qualifies as one? The grape sized stool? And who the heck remembers the timing of such events – especially when it was over a week ago? The total lack of movement really bothered me even though it was not critical. It was simply too similar to what happened to Gerhard. A few days ago we walked almost 4 miles doing laps of the floor with no results other than sore calves and proof that he was still ambulatory. Things in this department have improved but are far from correct. Probably won’t be for months given the ongoing chemo and side effects.
What do all these have in common? Mucous membranes. They are the shortest living cells in the body – from mouth all the way trough to the other end. All mucous membranes, all short lived, normally quickly replaced. But with chemo destroying the blood cells and the production of blood cells, this process is severely hampered. Resolution will only come with the return of blood cell production.
And what is happening with them? Up and down slightly from post chemo lows. Neutrophils down mostly to 0.00 to 0.01 over the week. When they start up again depends on the individual. It has been well over a week.
One night, he developed an irregular rhythm in his heart and they had to put him on beta blockers. If it isn’t one thing, it is another. Urine flow is good again but still painful.
Saturday the numbers finally took an uptick. From .01 to .04 (1000’s) = from 10 to 40 for neutrophils – the most important number needed for healing and not available by IV. Feeling better. Managed 2 milk shakes and an Odwalla. Patient demand pain med – available every 4 hours taken 10 hours apart. Also did 4 more laps albeit slowly. Had a lovely shower together. Had a nice visit with cousin Chuck and a phone visit with Ken Schwanz – the angel who introduced us to each other.
Sunday expecting a medication consult to better understand pros and cons of options. We follow directions as best we can and then got lectured about not using a med that was prescribed. Suggested taking it off of the prescription list so that it won’t be in stock confusing the record!? But we sure as heck don’t want to wait 8 hours for them to put it back on the list of options!
Also hoping for a psych consult regarding the panic attacks and to better understand how WE can better deal with the Cancer Related Fatigue we read about. Twice now I thought he would have a really good day given how well he was doing before a night’s sleep – even though the sleep was interrupted as usual. But come morning he was depressed and not interested in doing anything but sleep. Understandable, but not helpful. I don’t know how to help.
More than you ever wanted to know about blood numbers:
Neutrophil counts for the week: 0.01; 0.05; 0.00; 0.01; 0.00, 0.01; 0.04; 0.20. Normal levels are 1.8 to 7.0 so there is still a ways to go, but finally off the ground.
White blood cells (including neutrophils plus others) also climbing finally and up to .74 compared to a desirable 4.3 to 10.0
Hematocrit now at 26 – no improvement. Desired level 38 to 50.
Platelets 32 – up and down with IV donations with previous high of 31 and low of 8. Desired level 150 to 400.