Reprieve

I'm home. I can hardly believe it. Sometimes I close my eyes and imagine myself back in my hospital room, just so I can open my eyes to see I'm home and get the most incredible sense of joy. You know when you go on an awesome vacation, have a great time, and yet when you return, you realize that there is really no place more comfortable, more relaxing, more YOU than your home. Well, now imagine if instead of a great vacation, you were in a hospital bed for three weeks. Yah, you get the picture.

Continuing from my last post, I had returned back to Unit 57 from the hell-hole known as Cardiology, but it was still a pretty rough time. The side effects of the chemo were in full swing and each day really was a struggle. I couldn't eat much because of my mouth sores, I couldn't have visitors because my counts were so low, and I had to try to time my self-administered shots of fentanyl (narcotic pain med stronger than morphine) so that it would kick in before I had to go to the bathroom. It didn't always work out. Even through an IV, it can take up to three to five minutes for the drug to take effect. And we all know that when you have that kind of GI tract "problem", you don't have a lead time of three minutes! So very often, after a trip to the bathroom I would lay on my side in bed, shaking with pain for a few minutes until it went away or the fentanyl started to take the edge off. It literally felt like I was "being ripped a new one". I apologize for being so graphic and detailed about such an unpleasant and personal thing, but hey, I gotta keep it real.

There's really no way to rest at the hospital. At night, the most I could string together would be about 2-3 hours of sleep. I had an antibiotic IV drip at midnight every night that took about 45 minutes, then the nurse would come in and "flush" the line via another drip which took 15 minutes, so there wasn't much point in trying to go to bed before 1am. Every night at 4am was blood work and vitals. At 7am they came to weigh you and at 8am was meds. After that, it's constant flow of people throughout the day to clean the room (twice a day), change the garbage bags, change the linen basket, deliver more meds, get your food order for the next day, check vitals, stock housekeeping supplies etc.

Yes, that was the "poor me" portion of the story.

On Wednesday, April 13th they finally began administering the GCSF shots, the ones that get your body producing white blood cells to begin the road to recovery. The goal was to get six "G-shots" over the next six days so my bone marrow would release enough stem cells into my blood system that they could harvest them on Monday, April 18th.

To be honest, when the nurse came to explain the process to me a few days prior to the scheduled collection day, I broke down and cried because it sounded so scary. It seemed there were so many ways things could go wrong and the whole thing sounded way too science fiction to be my reality. The nurse was sympathetic, but then told me she herself had been through it for breast cancer. Not only that, she had it done in Dhahran, Saudi Arabia and was by herself. Her family was back in Canada, and while her son tried to be with her, there was some rule about males not allowed in the female section of the hospital or something like that. So now I thought, Jeannie, you're being a big fat baby. Here I am in the cushy Tom Baker with Wayne by my side - I can do this.

My blood work showed that I was "ready" as scheduled on the 18th. They gave me a last minute G-shot very early in the morning (6am?) and then around 10am they brought this giant machine into my room about the size of a two-person arcade game. It was a bit unnerving that it looked like it was from the 50's. Using two valves from my central line, they took blood out of me, processed it in the machine which separated stem cells from all the other stuff, and then returned the blood to me.

The collection went extremely well. The doctor determined they wanted about 2.3 million cells from me. I produced 2.4 billion stem cells in about 2 -3 hours. They normally schedule people across 3 days in case they're either not ready on the first scheduled day, or it could take several 6-hour collection sessions. So I rocked it! I am a super-producer!

The next step was to test the sample to see if it was usable, meaning it was not contaminated with cancer cells to the point where they couldn't "clean" it. I guess they have this process where they can filter the good from the bad, but if there's too many bad ones then it doesn't work. After a few hours, the doctor told us there was only 0.04% bad cells, definitely low enough that they can clean and use my own stem cells. This was a HUGE relief, as it makes things much, much smoother. Otherwise, they would have to find a match with one of my siblings or a stranger donor.

They're pretty quick to kick you out as soon as possible. So the next day (Tuesday), they discharged me to recover at home for a few weeks, to gain my strength and weight back before the next "big bang" chemo where they'll wipe out everything, give me my stem cells back, load me up with G-shots again and hope that I recover with all the cancer gone. That is the goal. 

Right now, I feel ok. I have a lot of muscle mass and strength to get back but it's coming quickly. When I got home I could only take about 3 or 4 stairs at a time before my thighs started burning and I was out of breath. Now,  I can go up both flights at a fairly normal pace, though I am pretty tired and a bit out of breath when I get to the top. My mouth is a lot better and I can eat most things, though my taste is still off and a lot of stuff tastes icky and metallic. I was happy to discover that Oreo cookies are not one of those things.

I'm not entirely sure when I will go back for the Big Bang treatment. I am scheduled for May 12th, but that may change depending on what's going on with my heart. The cardiologist is still working on getting the rate down, but it's a slow and gradual process. I'm hoping that the heart situation is some freaky virus thing and my heart will go back to normal function on its own. The cardiologist's nurse gave me hope that this indeed is what often happens when heart function is affected by chemo or a virus.

So until then, I am going to relish every minute that I'm home and continue to believe that I am going to win this battle and get on with my life in a couple of months. Please all continue to put those same positive vibes out there. I think there is a cosmic total where it all adds up and helps.

I appreciate all the emails and I apologize if I haven't replied directly. But please know how much it helps to hear from you all, and that I miss all of you and can't wait to see you again.

The Ride Gets Bumpy

It's been just over a week since my last post and so much has happened that it feels like months. Unfortunately, most of the "happenings" have not been very good. Things were going along as expected - I was definitely feeling the side effects this time around since the chemo was about seven times stronger than before. But I was managing ok, and they even gave me a pass to go home for the evening of April 3rd, which was great. We had to return to the hospital around 8am for all the meds and tests etc.

The next day, they also gave me another night pass, but we had to return to the hospital around 3am because my temperature was up. After a barrage of tests and rounds of antibiotics, the fever came down but they noticed my heart was beating too fast. They sent me for an echo-cardiogram and compared the results to a previous one done a few weeks ago. The results were very concerning as it showed my heart function had decreased significantly. It was serious enough that the cardiologist looking at the results requested that I be moved to the cardiology department immediately, citing that they had heart monitoring equipment that was not available in my current ward (Units 47/57).

Apparently they had a difficult time finding me a bed over there, and they ended up moving me to cardiology on Thursday night at 3am (technically Friday I guess). So we had to clear out my room in the middle of the night. As the porter was getting closer to the destination, I started to get a sinking feeling. The ward was run down, under construction, cramped and just had an overall bad vibe. I thought, well, maybe I feel this way because it's 3am and I'm tired and now I have a heart issue to deal with etc. While I was parked in the hallway I had a peek inside a room and thought "oh god I hope I'm not going in THERE". I saw a tiny, tiny, old and dingy room that looked as depressing as hell. Sure enough, that's where I was going. My heart sank. Wayne was with me and it didn't look like there would be enough room for him to stay, but they did manage to wheel in a reclining chair. It was an awful thing that reclined into the shape of a wok. I just couldn't handle having him sleep like that so we agreed he should just go home - it was already 4am anyway.

They hooked me up to a cardiac telemetry machine, which continuously monitors my heart and the results are displayed and recorded at the nurse's station.  Around 5am, the resident cardiologist came by to check me out and said he wanted to put me on drugs that will make me pee to get rid of some fluids. He said he'd let me sleep for a little bit first, and that we'd start around 6:30am. About 5 minutes after he left, a nurse came in to administer the drug. I said that I thought I was going to be allowed some sleep first, but I just got a cold, uncaring response. So I was up peeing about every 15 minutes until about 6:30am. 

Around that same time, I started getting the chills. Soon, I was shaking so badly that it took all the nerve I had to stick my arm out from under the covers to buzz the nurse-call button.  I told her I was freezing and had the chills/shakes really badly. She came and gave me some warm blankets, but then also said they needed to weigh me so I was to make my way down to the scale, which was past the nurse's station, about 30 meters from my room. I said I didn't know if I could do that, I was shaking so badly. She simply replied, "well we have to weigh you" and walked out. There was no offer for help or suggestion that they find a portable scale or whatever. So I wrapped myself in a blanket and walked to the nurse's station and got on the scale. I was shaking so badly, yet there was no concern about it all. In fact, as I passed the station again, the nurse said to me "your heart is beating really fast". I said it was probably because I was freezing and had the chills. She didn't show any concern. I got back to my room and after a few minutes, needed more heated blankets. After many minutes, someone came and gave me more blankets, but no one seemed to care about WHY I had the chills, and that it's probably indicative of another fever.

I tried to sleep but gave up around 10:30am. It was so noisy it was like a war zone and I was still cold. A nurse came in to take my vitals and give me some pills.  I needed a drink to take the drugs and she said there were some beverages in my breakfast tray. I hadn't been up to look so I asked what there was. She said coffee, orange juice and milk. I asked if I could just get some water, and with a tone of almost disbelief, she said, "ok... yah I guess so."

This was just the beginning of my short, and yet quite traumatic experience in the cardiology department. The same resident doctor came to see me and asked how it was going. I said, "umm, not very well..." assuming he had had seen my heart readings over night (the whole reason I was moved to cardiology to begin with). So to my surprise, he said, "oh, what's wrong?" I said, well I am completely short of breath, I've had the chills/shakes for about 5 hours and I can feel my heart pounding out of my chest. He said, "Oh. I'll go look at your records." He never came back.

They moved me again later in the afternoon. I was quite happy to get out of that room. I was just moving one floor down, and my new room had the same basic layout as the previous but just felt better and less depressing. Wayne had come back by now and we still had no meaningful interaction with a doctor. After some complaining about this to the nurse, a cardiologist finally showed up. He was old, grumpy and completely negative, repeatedly saying how dire my situation was. So to clarify, Wayne asked if we're talking about me never playing sports anymore, or what? His response was that we're talking about whether I live or die. Ok... I wasn't feeling that kind of concern or sense of gravity from the nurses or anyone else. After he left the room, Wayne and I were pretty floored. How much of what he was saying comes from being a negative, grumpy, old Russian doctor with no bedside manner? Clearly there has to be some hope since there's a treatment plan! Just at that time, one of my doctors from Unit 57 came in to see me. She said this sort of thing can happen with the chemo, though it's not that common. It could also be viral, and could improve on its own over time. Overall, she said to try not to worry too much, there's a plan in place to get my heart rate down, and while it may be that I have to take heart meds for the rest of my life, this is a very treatable condition. 

Well, that's a significantly different perspective. And while the facts of the case may be the same, we'll go with the positive approach, thank you very much. 

Over the next 24 hours or so, I began to gain a completely new appreciation for the level of care at the Tom Baker and associated units (47 & 57). Everything from the rooms themselves to the responsiveness of the staff, and most importantly, the competency level of the nurses. Wayne and I began keeping track of all the instances of what we felt was incompetence, because we might launch a formal complaint at some point. The list is quite long, so I'll just give a few examples:

• Despite a note on the door, time and time again they would enter the room without a mask
• A nurse came to give me my meds and started listing some of them. They didn't sound familiar so I assumed these were my new heart meds. Then I heard "insulin". Whoa! I am sure I am not supposed to get insulin! It turns out she was in the wrong room
• I had to get blood-typed and tagged - standard procedure every 7 days. It took the nurse about 30 minutes to do what I know normally takes about 10. She fumbled and fidgeted and at one point didn't seem sure what parts worked with what (all the required equipment comes in the blood collection kit). She finally collected the blood, but then filled out the paperwork wrong and the lab rejected the whole sample, so they had to do the whole collection again
• The second time around, a blood-type band was successfully generated, but the nurse didn’t know how to put the band on my wrist. It’s a plastic band with a metal clasp. After many minutes, she said, “hmm this is challenging”.  I suggested she look at how the old one is attached (still on my wrist) so she tried to follow it, pushed down the metal clasp then realized it was all twisted and not affixed properly at all. The metal clasp was now locked, so she had to cut it off with scissors and said, “I guess I’ll have to get another one.”
• While they were attempting to flush (clean and clear) my central line, I was sprayed in the face twice. The first time it was just with saline. Apparently, the syringe “slipped”. The second time was with this stuff called Heparin, a blood thinner to make sure the line doesn’t get clogged. It smells like paint thinner. It was all over my face and glasses. If I wasn’t wearing glasses it would have gone into my eyes. In this case, the nurse tried to tell me that this was “their procedure”. I was clearly upset, and said I’ve never been sprayed before ever, and I’ve probably had my line flushed at least 50 times. Now, I’ve just been sprayed twice in 20 minutes. She apologized over and over and ended with “don’t be mad at me”.

These are just a few examples. By Saturday, after having spent two nights in the cardio unit, I was determined to get the hell out of there as soon as possible. When the head doctor of Unit 57 came to visit me, I burst into tears and said I had to get out of there and get back to Unit 47/57. I said that it was “a fucking gong show” and I feared for my health and safety. I gave him a few examples. He said he’d talk to the cardiologist and get back to me. At noon, they told me I was moving back to Unit 57. I don’t ever remember feeling more relieved.

Since then, I’ve been appreciating the level of care in this ward, but at the same time struggling with some very difficult side effects. A cardiologist is still following me, and luckily he is a very nice guy and not grumpy Russian guy.  They’re slowly lowering my heart rate with medication and they say I’ve been responding well. My mouth is killing me – sores are a very common side effect, and it’s affecting my ability to eat solid food. This of course does not help the other common side effect of GI tract problems. Pain from both of these things lead me to discover… morphine!! It wasn’t as dramatic as I thought it would be. I think they’re giving me a relatively low dosage.

So it’s been very difficult lately. Remember my post about time flying? Well, these past 10 days have definitely not gone fast. Each day feels like a long, long battle. But Wayne and I continue to hold on to belief that all this will be behind us one day. He picks me up when I get down, which is quite frequent lately. Thanks to him and family and friends who constantly remind me that I WILL get through this – these are words I need to hear.

Back to the Baker

Last Wednesday was the CT scan and then the meeting with the doctor to discuss the plan. The plan was pretty simple, they were admitting me back to the Tom Baker that day. Ok, I guess we're starting.

The first day was mostly prep. I had the bone marrow biopsy which was painless because I had them knock me out. They also put in what's called a "central line" which is probably the best damn thing that's happened. It's basically a tube that runs for a little bit under my skin directly to a main vessel. The other end of the tube sticks out the right sight of my chest with 3 "valves".  This is how they put stuff in and how they take stuff out.

No more IVs or vein pricks for blood. The first time I was here, they didn't put one one in and I needed blood tests done 3 or 4x a day. Each time the nurse would say, "Why didn't they put a central line in?" My arms were quite literally black and blue all up and down. Not anymore!! Now when they need blood, they just plug in, and the drugs go in the other lines. It's made a huge difference, especially at the 4AM testing. I just have to be awake enough to roll over. Don't feel a thing.

They ran the chemo Thurs-Saturday and it went ok. I was pretty tired all weekend. Some stomach issues. Some mouth sores that bugging me the most now. Haven't eaten too much but I'm not worried about that. I've been drinking those meal replacement things. My understanding is that things will get bumpier in the next week or so. But Wayne and I will get through it.

Thank you all so much for your emails of support, encouragement and best wishes. I haven't had the energy yet to get back to each of you individually but you all know how much you mean to me.