Roobeedoo, Spiritwoman, and Andre’s weekend doc all suggested that playing music might help Andre relax. My initial notion was that silence is best in not agitating him. It seems I’m wrong. I started with classical music to relax Andre but he seems to get excited every time a piece reaches its crescendo. New age seems to be the same. I ended up sticking to ballads and “lite rock”–it looks to be just right.
For this weekend, I had to pushed the doctors to be more aggressive with getting Andre off sedation (i.e., lowering the Versed they’re infusing into him). They and the nurses seem to be trigger happy with bolusing him with the sedative every time he “wakes up” fidgeting. I can understand their concern about alleviating the discomfort of their patients but in Andre’s case, their usual methods have only resulted in him being more despondent. Additionally, I’ve noticed that the nurses are quick to give sedation because it makes their job easier. I had to convinced them to give Andre several minutes to calm himself down every time he “wakes up” by gently explaining to him where he is at, what’s going on, and what he needs to do. I know this works because I’ve done this several times. Doing this over the weekend, we’ve managed to cut his Versed level by a quarter.
Andre made and answered several requests this weekend during those intermittent minutes of cognition. He’s able to answer simple questions (e.g., are you in pain, are you hot, are you cold, etc.?) and to give me kisses. He appreciated my trimming of his facial hair and cleaning his ears (he was able to indicate that his ears were itchy). He was also able to signal to us if there is something that’s making him uncomfortable (e.g., having to pee, having a bowel movement, the telemetry electrodes and wires digging on his back, etc.). I’m taking all of these as signs of progress. I hope it continues in the right direction.
I went to see Dr. Nair yesterday for my regular appt., to check all vitals, as well as having the usual CBC to check on white and red blood cells. I weighed 91 lbs. by the way…..something I am so concerned about :( I didn’t know if the results of the bone marrow biopsy I had on Tues. would be in by then or not, so I went in wondering if the results were back yet. Mom took me to this appt., as I also wasn’t sure if I would be receiving my infusion that day or not, and in case I did have the new chemo infusion and I had any side effects, we thought it best if mom took me to my appt. and Ashley would come and pick me up when I was done, as we also didn’t how long it would take either. So I went to this appt not knowing several things. My RBC were all either just at normal or a little low, but nothing that required any intervention. So all of those are stable for now. That last transfusion has lasted me 3 weeks now, so that’s a high five, as again, it has made me not as horribly fatigued as I had been. Just a word about Dr. Nair before I go on with the rest of my day…… As I’ve said before, I trust him implicitly. We are a team. I really think that goes back to my very first appt. with him when he so thoroughly explained what MM was and what the possible treatment options were for this disease. (He made drawings and all). :) After he was done I had said to him “We are in this together, right?” and “We’re gonna do our best to beat his thing as a team, right?” and he answered yes to both questions, and then I gave him a “fist bump”! Oh, yes I did! LOL…..he then stood up and pulled me to my feet and gave me a big hug and said “we will fight this as a team and fight together”. That was the very beginning of our relationship, and we’ve only grown closer and more trusting over these 2-1/2 years. He has also told me that he knows and respects that I am very informed about this disease, so when he says something, he knows I understand what he is talking about and if I don’t understand or have any questions, he takes however long it takes to explain things to me. He has a way that includes me in all decisions. For instance, when I went in for my last blood transfusion, the way he said it was “how do you feel about having a blood transfusion for your low RBC count?” Now if I had said, let’s just try the shots for a few days and then I’ll make my decision, he would have respected my decision and done it my way. At the time, as well documented here, I was feeling so horrid I jumped at the chance for a transfusion, so of course said yes, but my point is he would have done it my way had I chosen differently. Another thing about my doctor…..he does not give false hope NOR predict dire outcomes. If you are ever diagnosed with a serious disease and a doctor either tells you no problem OR gives you an expiration date…..find the door AND another doctor as fast you can. The “no problem” doctor cannot predict side effects, medical complications, etc. and the “expiration doctor” does not have a crystal ball that can predict the future and everyone is different, so neither doctor has any business telling you one way or the other, and has no business being your doctor. That’s why I trust Dr. Nair so much. He does neither. What he has to say to me at any given appt. is about how I am doing right then. Another reason I trust him so much>>>> he has said to me on several occasions “Jan, out of all of my patients, you are the one that is always on my mind. I think about what is going on with you and what the next several outcomes might be, and where we wil go based on them. You are always uppermost in my mind”. That assures me I am not on someone’s back burner….or that my doctor is just waiting for the next bomb to drop before thinking about options, etc etc. It makes me comfortable. He totally has my back and and we have a mutual trust and respect for each other, that I am so grateful and thankful is there. He always greets me by either holding my hands in both of his or a big hug and ends the appt in the same way. I feel close to him. I cannot imagine going through all of this without someone like him guiding me through this journey. Now back to my day…..he told me that the bone marrow biopsy results were in and that it showed 50% cancer cells were in my bone marrow. At initial diagnosis back in 1/07 the results were 65% cancer cells, so that basically means I am almost back to where I started from and that’s even after going through the hellacious bone marrow transplant. I started to cry. This news actually stunned me and I don’t really know why. It shouldn’t have, as I’ve had several indications that I have a very aggressive form of MM starting with relapsing from the transplant after only 10 months and the latest low red blood cell counts over and over. That’s what MM does. Of course I got an extra hug (LOL) when I started to cry, (and a box of tissues) which I really hadn’t planned on crying, it just sorta popped out of me! It was totally unexpected on my part, but hey, it was a real and genuine reaction. We then spoke some time about starting the velcade right then and there and I was prepared as I did bring my IV transfusion bag with all my “stuff” in there to occupy the time. He assured me that this will definitely bring down my MM numbers (that’s why he wanted the biopsy results done first). He said I would receive Velcade for 4 months and then we would see where I was at that point. That would be on a schedule of Fridays and Tues. for 2 weeks and then 10 days off…..to start that schedule all over again, for a total of 4 months. I asked him if his goal for this round of treatment was a partial remission (in my mind having had an unsuccessful BMT and having to back down on my revlamid b/c of side effects) and he said NO….my goal for you will always be complete remission. He also told me in years back, all an MM patient could hope for was at the most 3-4 years tops, but now with the inventions of so many new chemos and drug combinations, that I can seriously look at a minimum of 10 years and that who knows what is coming down the pike as far as new treatments and drugs. Like I told you before, he doesnt just throw out numbers easily (or at all), so for him to say something like this really does mean something. After discussing a few more things, I went back to the infusion room and started the next leg of this journey I’m on. Nobody promised it would be easy, huh? I’m just bummed out right now, but I’ll get over it and move on. I still find myself feeling a little sorry for myself and the tears well up, but it comes in waves and then passes. Luckily for me, my personality doesn’t really make me stay in a sad place for very long and thankfully I’m not a “dweller”, so that’s a good thing too!! So for now, that’s were I am>>>> all positive thoughts and prayers are more than welcome. :) A really big thank you for traveling with me and being by my side while I go through this. It helps even more than you know.
I’m back in Seattle after being in Vancouver since Wednesday afternoon. I’ve kept up on Andre’s progress by calling the nurses at least three times a day, but the day nurse today was quite thoughtful. She called me an hour before the end of her shift to tell me about Andre’s progress. He’s been breathing on his own (with pressure support from the ventilator) since 9 AM this morning. The respiratory therapist had just put him back on the ventilator at 8:30 PM to rest him for the night. The remaining issue is still the level of his sedation. He’s still being kept quiet most of the day. I hope tomorrow they’ll go back lowering the sedation while he’s breathing on his own.
Andre was completely sedated when I came this morning. I had another “incident” with a physician today, this time with the new attending oncology doc. It seems I’m losing my patience so I need to just calm down just like what I tell Andre.
Completely asleep but with titered down sedation, they put him on pressure support ventilation at about 10:30 AM. He started stirring half-an-hour later and bingo!–he went into his usual agitated state. I don’t know what else to do and it seems the pulmonary & critical care team are also running out of ideas. I heard them say, “maybe we can ask psychiatry if they can help”. Argh!
And on a different note, I need to go back to Canada to deal with some personal and work-related issues. My work has been very understanding of our current situation but I do feel the need to get more work done since I’m technically not on a leave-of-absence.
Monday and Tuesday are very similar days to a degree.
They started weaning Andre off the sedatives and he responded with differing degrees of agitation. The biggest battle is always when he’s waking up from sedation and sleep in the mornings. He would shake his entire body, breathe rapidly, increase his blood pressure and heart rate, have V-tachs and SVTs, and pull off everything that’s attached to him–the electrical leads, the feeding tube, and the breathing tube attached to his tracheotomy tube. He managed to remove the breathing tube on Monday morning so the nurse had to put him on restraints which was very difficult to witness. I hope Andre doesn’t hate me for allowing that since it was done with the best intentions.
Tuesday was worse than Monday in terms of his agitation. To make matters worse, Andre has a new pulmonary & critical care fellow in-charge of his care. During Andre’s most agitated state which occured at about 12:30 PM, she ordered a couple of tests that I didn’t agree with–an arterial blood gas and a chest X-ray. The nurse also questioned the orders but only to me. I had a problem with the arterial blood gas because it’s a more painful process than a simple venipuncture (they have to go deeper with the needle to reach an artery) which can increase Andre’s discomfort. They also haven’t done arterial blood gas measurements on him for at least two weeks since they took out his art-line, and his venous gas level has been a good enough estimate of how well his gas exchange is doing. In fact, they’ve been doing only venous gas level measurements on him everyday for the last two weeks through his central line–a process that is painless and non-invasive. The fellow’s defense of the going the arterial route is that she wants to look at his O2 level even though she admitted that she is more interested in the blood CO2 and pH, two numbers that can accurately be derived from the venous blood. I pointed out to her that Andre never had any problems with his O2 level and that the O2 sensor attached to him 24/7 had never indicated any issue with his O2 saturation. My problem with the chest X-ray is that they’ve just X-rayed Andre in the morning (in fact, he gets this every morning) and doesn’t need the extra radiation exposure since the “respiratory event” that she’s so worried about is clearly agitation induced and nothing out of the extraordinary. She would have found this out if she had talked to me, listened to the nurse, or have read his charts. They did do the second X-ray of the day and as I expected, it came back with clean results. She also would not listen to the nurse when told that Andre required some bolus of sedatives throughout the day to maintain his calmness.
It took calling the attending doctor to finally let the nurse give Andre more sedation to rest him for tomorrow. They’ve taken off several sedatives/pain meds for the rest of the day so they can “re-boot” on how they’re balancing Andre’s pain and agitation with his wakefulness.
The good thing about these last couple of days is that when Andre is calm and semi-awake, he manages to communicate with me and the staff. He kisses me when I ask for them (although at one point, he withheld his kiss when I apparently pissed him off for not understanding the words that he was mouthing and I kept shouting at him to calm down and control his breathing). He’s able to tell us if he’s in pain and if he wants to be turned. He also understood the news about Ben Spies, Sarah Palin, and Michael Jackson (I don’t know though if he’ll remember them). The funniest thing that Andre did was when he gave a sarcastic smile to his nurse who gave him high praises for being able to dangle his feet off his bed during physical therapy. It was classic Andre.
Spent several hours at the outpatient surgery part of the hospital, filling out all of the paperwork, getting blood drawn, etc., making sure all of the “proverbial ducks are in a row” for my bone marrow biopsy tomorrow. Have to be there at 9:00 am for the 11:00 am procedure. I’m not sure, and it wasn’t documented on the paperwork anywhere, what kind of anesthesia I will be receiving tomorrow. Last time I had a biopsy at the hospital, it was a different kind of biopsy….. it was right after my cancer diagnosis, and the biopsy was to determine what kind of cancer I had. They had to take different pieces of my tumor from different areas to send to the lab for a definitive diagnosis. Tomorrow it will be going into the hip bone and extracting strands of bone marrow and be used to determine how many cancer cells are “hanging” out and where I basically stand with this disease right now. At initial diagnosis, my bone marrow contained 65% cancer cells, so I am curious to know how aggressive this disease is being right now, (especially after having had a transplant!) and it will also help the doctor assess how aggressive he needs to be in treating the MM. Fingers crossed they haven’t gone up an outrageous amount. Which brings me back to…… I’m not sure if I will be out like a light tomorrow or he’ll do what he did for the 1st one I just described. During that procedure, I was awake the entire time (I remember them asking me….how do you feel?….did you feel that?..it won’t be too much longer….stuff like that) and was told they were giving me (through the IV line)…..a fast acting but short duration pain medication that they could administer frequently as needed and another drug…( I forget now…..WOW, that drug has lasted a LONG time..LOL) maybe it was versed?), so that I could still be awake to answer their questions, yet not remember the pain ….THAT”S MY POINT DOING IT THIS WAY :) So we’ll see, either way, as long as the biopsy goes smoothly is done as painlessly as possible, it’s all good. I’ll let you know how it goes, but if it’s the same as the prior biopsies which I am anticipating, I won’t even know something was done, except for a teensy bit of tenderness in the hip area. No big deal :)
There isn’t much to report on Andre from yesterday, July 4th. His medical team had started tapering off his sedation. They did a CT scan of his chest to look at the infection in his lungs. And they started him on what they call “pressure support” ventilation during daytime. At night, he back on full ventilator support.
Today, the CT scan result shows nothing significant. There is no spreading or enlarging of the remaining small nodules in his lungs. His white blood counts have also improved a lot so that should help with fighting the infections. He’s awake right now, and able to nod and shake his head to respond to questions, he mouths words and tries to get up–all good signs.
Had my appt for my bloodwork yesterday and WOW……all was really really good! It’s such a great feeling when after a doctors appt you walk away with good news….. for a change! My WBC’s were normal, but those pesky RBCs that have been nothing but mean to me and a HUGE pain in my ass these last few months were wonderful. So that means that not only did the blood transfusion work, it seems to have lasted and not petered out, as it was given to me a week ago today and my numbers yesterday indicate almost double what some of them were last week and the rest in normal range. Woo Hoo. The main thing about all of this though, is I FEEL good. I feel normal, with only a slight fatigue at the end of the day, but hey, that’s normal. I am driving, running errands, doing household stuff and even in the midst of choosing a color to paint my bedroom! I had picked up the swatches of colors over a month ago, but then BOOM (enter 4th of July firecracker noises here) the big blood crash, so needless to say, the painting of the bedroom was placed way way back on the last imaginary burner. I also WANT to get back to my studio making beads and jewelry. I’ve missed that so much :( But now, well, let’s just say, I’ll be in the studio for LOTS of time now, because while I did have my “crash” time, I had lots of really cool ideas floating around in my head for bead ideas, so I can’t wait to get out there and start “playing with fire” again. If you have never seen photos of my bead studio, you can check out my Facebook Page…..Jan Farmer….and on the left bottom of the page is a link to my photo album of my bead studio. Gonna run for some groceries shortly….. ahhhhhhh……the little things you look forward to when feeling better….LOL) and then coming home and “play” with glass for a few hours afterwards. Ya’ll have a great 4th of July tomorrow. Ashley and I will either be going over to Mom’s for a BBQ or go out to eat, we haven’t decided yet. I have 2 upcoming topics that have been swimming around in my mind lately, that I will be writing about shortly…..one is the Bucket List and another will be photos of baby kittens that my Mom and Van fostered…. a feral cat (actually it fostered them)…she had babies in their driveway and they are getting old enough to go to a no-kill shelter for adoption soon and I want to take photos of them while they still have them. They are truly too cute for words.