The alarm went off at 5:15 and I hit it twice. The plan was to go to bed early, which I did, as I turned the tv off around 11:30 pm and fell asleep shortly after. BUT THEN…..around 2:oo am I had to pee, so I woke up and made my way to the bathroom. When this normally happens (pee in the middle of the night), I get up in zombie mode, pee get back into bed and just roll back to sleep with no problem. I guess when I got up to go last night, a thought of having to get up in a few hours for the transfusion came into my brain and that, my friends kept me up until 3:30 am! After laying there awake for an hour I finally turned the tv on and watched some infomercials (LOL) and finally fell back to sleep around 3:30 and then the alarm went off at 5:15. UHGG. That’s why it got slapped twice at 5:15 and then I finally decided to get up and start the day. As I’ve said before, it really does take me a while to physically move in the morning due to pain and stiffness issues, so by the time I got to the hospital for the transfusions it was 7:20. Oh well…..beat me with a stick. Turns out they really weren’t ready for me anyway (they probably tell you to get there at least 15 min before they want you there anyway) as the needle entered my arm at exactly 7:40 am. The 2 bags of blood took 3 hours to infuse and then out the door I went. Now last time I had a transfusion, I experienced an increase in heart rate to where I thought I might be having a heart attack and my pulse ran around 130, which really got kinda scary. I also ran a small temp (around 100.2) I had left my post transfusion instructions there by accident last time, so didn’t have a sheet to refer to so I didn’t know if this was a reaction and normal or abnormal. I was really close to calling the ER that night but decided I would be ok if I could just go to sleep, and I did and was better and better but the heart rate and small fever did last 2 days. Well, today I read and kept the instructions on transfusion reactions and guess what #1 is? INCREASED heart rate, RAPID PULSE and HEART PALPITATIONS! So I guess I wasn’t losing my mind last time. (good to know…good to know)`Just FYI the others on the list are: skin rash, fever/chills/flushing, headache, backache (now that one’s gonna be hard to tell :), diarrhea (that one won’t be hard to tell) and finally fatigue (laughable one for me, huh?) I remember last time too the symptoms came on later in the evening….around 8:00 pm or so and it’s now 7:15 pm. I don’t feel bad at all, so fingers crossed, I’ll skip the ole symptoms this time, if that’s ok. So all in all, it went well and I’m feeling OK.
One step forward, two steps back.
That seems to be our story. It’s only 10:45 AM in the morning and a lot of things had happened.
First the good news:
- The result of Andre’s bronchoscopy (bronchoalveolar lavage) showed no infection. They didn’t see any bacteria, fungus or virus, and because of this, he is no longer under respiratory isolation. We don’t have to don facemask, gloves, and protective gown to enter Andre’s room. I can now touch and kiss him.
- His kidney function continues to improve.
The other kind of news:
- Even though they didn’t detect any infectious agent in his lungs, the docs think there’s inflammation there that needs to be controlled. The inflammation is what they call BOOP ( bronchiolitis obliterans organizing pneumonia) which can contribute to the significant dead space in his lungs. To address this issue, they will increase Andre’s steriod dose from 70 mg every other day to everyday (maybe more if they don’t see any improvement either physiologically or radiographically).
- He was so distressed this morning that his bedding was soaked in his sweat. He also had another V-tach which happened while the docs where checking on him. The V-tach could have been caused by having too much fluid in his system, having high CO2 levels in his bloodstream, the Haldol, or any number of things. The good thing is that it resolved itself afterAndre’s sedation was increased and they made changes to the ventilator settings. He’s more comfortable now.
- They’re not going to do any breathing trials today because of his condition this morning. They’ll do them again over the weekend. If by Monday morning the pulmonary critical care docs decide that he’s nowhere near getting extubated, they’ll call in the EENT surgeons to do a tracheostomy. They do this for patients that are difficult to extubate. The patient would still be on a ventilator after the procedure. Tracheostomy tubes are preferred over regular breathing tubes because of several reasons: it makes the patient feel more comfortable because there’s nothing in the mouth that can activate the gag reflex; no straps around the head are required to hold the tube in place; there’s less chance for erosion to happen in the mouth area; and there is decreased chance of damaging the vocal cords which can happen with regular breathing tubes.
- His white blood count remains steady but low.
I hope the afternoon will be less “exciting”.
It’s a relatively good day for Andre. He did a spontaneous breathing trial–him breathing on his own–today that lasted for about 35 min. The CO2 level in his blood after the test was still higher than normal but it was close. Shortly after the test, the pulmonary critical care doc decided to put the ventilator on an as-needed mode (I think he called it pressure assist). Andre managed to breathe on his own for another 2 hours before he “woke up” agitated from sedation. Everyone was happy with the work he had done today. I’m happy too.
The preliminary results of Andre’s bronchoscopy so far shows no bacterial infection in his right lung. As a precautionary measure, they added another antibiotic–Vancomycin–on his meds list. Andre’s kidney function is also showing signs of improvement which is another reason for me to be happy.
For tomorrow, it will be more of the same for Andre–spontaneous breathing trials coupled with the sedation level balancing act. As for me, I need to start packing what’s left of our Seattle home. It’s mostly Andre’s garage/workshop that I need to move. If our realtor doesn’t drop the ball, the signing to close on our house sale is on the 2nd of July. It’ll be a busy weekend.
Had an appt with Dr. Nair today and after getting blood, weight, blood pressure, temp, etc etc and answering oh so very personal questions like do you have diarrhea or constipation (heehee…..believe me, once you have cancer there is NOTHING personal left about you!), I went in to see the doctor. Oh by the way, the weight from tuesday was correct (I was so hoping it wasn’t) as today I weighed 92.5. YUCK We talked for a while about my situation, (I am NEVER rushed by him…..ever), but I’ll give you the Reader’s Digest condensed version here. I will be going to the hospital at 7 AM tomorrow morning (kill me now) for a 2 bag blood transfusion to get these reds up. Apparently, the MM has become so active and obviously aggressive right now, that the procrit just isn’t able to bring the reds up by itself. Hopefully I’ll have a better result than the last time I had a transfusion, as I didn’t notice a difference in the way I felt. It must have worked on a physical level though as it was about 6-8 weeks since I had the last one I think. Dr. Nair and I also agreed that I will also be scheduled for another bone marrow biopsy next week…..oh….now that’s a fun way to spend the day! We did not start the Velcade chemo today, as he said that now that I have fully relapsed, he would be more comfortable knowing exactly where we are starting from at this point, and I agree. When I was first diagnosed, my bone marrow contained 65% cancer cells, so now that we are starting down the road again, he (and me) would like to know where I am exactly starting from now and it will also assist him in helping to determine how aggressive he needs to be when treating me. He said my MM #’s will decrease once I start on this new additional chemo so he wants to wait until after the biopsy is done to begin this additional chemotherapy. SO tentative plans are start on the Velcade next Thurs. When I get in for the biopsy is up to the hospital scheduling. I don’t think I mentioned that I have an appt in mid-July at Moffitt Cancer Hospital with the doctor who was in charge of the BMT process. He is a very famous world renowned doctor that specializes in the treatment of MM. The appt is to basically have my one year check-up and Dr. Nair will also talk to him and discuss what he feels are all the available options for me are at this point in time. I drove myself to the docs today as I was feeling up to driving (and to give poor mom a break) but it took forever because of having the transfusion tomorrow, they had to draw additional blood and complete paperwork, and then I had to go to the hospital and register in out-patient and give them my blood so they can type it and have it ready for my morning “cocktail” tomorrow. This running around today wore me out (only so much gas in my tank right now) so I came home, drank a boost, had a little sumpin sumpin to eat and just chilled. Gotta go to bed early tonite as I have to set alarm for 5:15 AM to leave at 6:40 AM because these ole creaky rickity bones need their time in the morning for the heating pad to loosen them up and time for meds to kick in prior to being able to move. Mentally feeling ok, actually. I knew going into this that there would be ups and downs and I’m just in a down right now but “this too shall pass” and things will turn around. Even though we intellectually know this, when the downs arrive, they do throw you for a loop, no matter how prepared you are. Once I feel physically better too, there’ll be no stoppin me :)
I am sorry I posted to soon. At 10:00pm Mark spiked a fever. He was admitted to the Huntsman Hospital by 11:30 pm. They are doing test to look for infection.
I will update more as I find out.
Sorry for the late posting. I went out for a hearty dinner with a former colleague who is also a very close friend of ours. It was good to take a break from the hospital, and I know Andre didn’t mind.
Andre had a relatively busy day today. He had a bronchoscopy early this morning. The did this so they can find out if the spots they saw on his chest X-rays are from another infection. I got to watch how it’s done. It involves running a fiber optic cable down the mouth all the way to the lungs. Once in the area of interest in the lungs, the doctor can either get a biopsy or squirt some saline solution which they recollect (minimum of 30 ml) for examination. It’s the latter procedure–called bronchoalveolar lavage–that they performed on Andre. They’ll do molecular diagnostics (e.g., PCR) and culture of the washes to identify the infectious agent. Once they know, the infectious disease docs can make a rational decision on the antibiotic cocktail that the patient should be on. I’ll let you know when the results are in.
Another thing they did with Andre is to change the device that holds the breathing and feeding tubes. Andre was quite fiesty this morning when they were doing his oral care. He was biting hard on the tubes, and was making the ventilator alarm to go off. The new device has a built-in bite guard.
They lowered the dose of Versed and Fentanyl so that Andre can be easily awaken when they do the breathing trials. To combat his agitation, they’ve added Clonazopam to the mix. They did not do a breathing trial today because he was too sedated after the bronchoscopy. He managed to wake up and, according to the nurse on duty, was responding to questions. I missed this bit because I was at home showering and doing the laundry. They said they’ll wake up Andre from sedation early tomorrow so they can do the breathing test. I promised him that I’ll be there. I hope he’ll do well.
and I mean teensy, but hell, I’ll take what I can get at the moment! Found that I could navigate the house without the cane today as I feel a little bit stronger after having had the procrit shot for my low reds yesterday. I was really wracking my brain to figure out HOW ON GOD’S GREEN EARTH, could I make myself start feeling better. That’s the frustrating thing….it had to be a medical intervention, that I had no control over. I do believe the shot helped to kick start the reds to start working….wonder if they have a portable thingie to plug mself into when I start feeling shitty? I know my body well enough to know when something is happening and it definitely was, as proven that the shot has made me feel a bit better today. Even threw in 2 loads of laundry today…woo hoo. Dang….I’m not asking much am I, when all I’d like is enough energy to do some simple household tasks right now? I still don’t know if I’ll be starting on Velcade tomorrow or or not, since I’m not up to par. Have appt at 10.45 am tomorrow, so I’ll pack a little “chemo bag”, just in case I do. Chemo bag contents: small blankie (it’s cold in infusion room)….my I-Pod, 2 magazines, the morning paper, a book and some small snacks, esp since my weight yesterday was 92! Isn’t that pathetic? I must look like skeletor. I’m not sure it was the right weight anyway as I wasn’t paying attention when she weighed me (and kind of got a ditzy girl I rarely get) and to lose 2 1/2 pounds in 5 days seems a bit much, so I’ll pay attention tomorrow and see where that is too. Added 2 Boosts to my daily regime (gosh they are filling), but I gotta pack on some weight as that too can become a detriment to healing if my weight gets too low. Sheesh….anytime, anyone wants to stop the merry-go-round, (or even slow it down), I promise to get off :)
Today is day seven post transplant and most everything is still going well. Marks white blood cell count hit bottom and now is back on the rise. Still no immune system right now.
Last night Mark broke out in a rash that had welts the size of silver dollars. I gave him some Benadryl, and we talk to Andrea the PA today. Mark is allergic to the Neupogen shot they give him to boot his stem cell production. As long as he takes the Benadryl he doesn’t itch and the rash calms down. So we can continue to boost the cells this way. He was tired before, now he is really tired.
Tomorrows visit Mark will receive platelets, his platelet count has dropped, this is normal. Mark didn’t need platelets with the first transplant. So Mark will get platelets, the neupogen shot and the daily antibiotics.
Well Mark’s hair all came back in so nice. Bad news it is all going to fall out again any day now .
Mark is on the up hill side of this. Lets all hope it stays on this good side.
Well as I predicted… Summer has officially arrived and so did the lab results from my 10th Revlimid cycle. “Better” without supplements despite a strong correlation with supplements in the prior 5 cycles. So would you spend the $4 bucks a day on those 2 dozen pills? If a few numbers and a single point of measurement were all that was needed to define success or failure life would be a lot simpler. Heck we wouldn’t even need clinical trials at all. I do have to admit that I expected the trend to continue, but “Better” is better than worse even if not living up to my biases. 30% better is 50% better than 2 months ago – that almost looks like a trend.
The fireflies are out in force here in western NY. Before the farmer mows the hay field by the house driving into it is like magic. Right at eye level there is a sea of swimming lights in all directions. A bit of light no matter how small can bring a smile to my face.
Andre is still heavily sedated. He seems to be calmer today as well.
He did better on his spontaneous breathing trial (SBT) today than yesterday, but it is still not good enough to be off the ventilator. The respiratory technician added a humidifier to the ventilator setup. I’m taking this as a sign that Andre will probably have the breathing tubes for several more days. I hope I’m wrong.
They did a chest X-ray today to see if the chest tubes that drain the fluids and check for air leaks in the lungs can be taken off. Everyone of Andre’s doctors agree that getting these tubes off will decrease Andre’s discomfort. I hope the surgeon’s will take them off soon.
A sonographer was also called to do “Doppler ultrasound” to check for clots in his legs (DVT). Her unofficial verdict–because it’s the radiologist who does the read–is that there are no clots in his legs. Thank God that’s one less possible cause for a pulmonary embolism. As I mentioned in yesterday’s blog, the docs can not confirm if the dead space in Andre’s lungs is due to an existing pulmonary embolism because they can’t do a CT with radio-contrast due to his poor kidney function. I know they are closely monitoring his fluid intake to get his kidneys up to speed. I forgot to ask what their plan is to address the dead space in his lungs (NOTE TO SELF: ask this question to the pulmonary critical care doc when he comes in for his 2nd visit of the day). I hope there is a plan.
Andre’s attending oncologist also spoke to me today. She’s not one to cite statistics, but I think she was trying to impress on me the precariousness of Andre’s condition–some people recover and some don’t. She mentioned all the things that they’re addressing. According to her, the medical team’s main concern is still the infection that he has in his lungs. They’re worried that the pathologist not only confirmed the fungal and viral (CMV) infection in his lungs, but also found Gram-negative bacteria (definitely Pseudomonas aeruginosa; I don’t know if there are others). Andre continues to be on antibacterial (Levofloxacin, Imipenem and cilastatin), antifungal (Amphotericin B and Posaconazole), and antiviral (Foscarnet) medication. The better way to fight the infection is for Andre’s bone marrow to start producing white blood cells again in sufficient numbers. He’s been able to do this before but not currently probably because of the myelosuppressive side effects of some of the drugs that he was/is on. The docs have pared down Andre’s medication to the essentials. I hope this, plus the G-CSF shots that they’ve been giving him since before the surgery, will work soon.
I continue to hope.