Home from the Hospital

Well I'm home from my 6 night stay at HSC. This week was not as luxurious as my stay at The Grace last month. There was no private room and flat screen TV waiting for me this time. Thursday night, after my last entry, Christina came over to watch Anthony while Adrienne and I headed to the HSC Emergency. We waited in the emerg waiting room for about 3 hours before we we're brought back to a private room. Our friends Jody, Steph and Michelle came to wait with us which was nice. We didn't even see Steph and Michelle because by the time they got there we had already been called. But they all stayed there til after midnight to see Adrienne when she left. Pretty nice friends! Hours in the waiting room gets old pretty fast but if you're only there for a little bit it can actually be kind of exciting (at HSC anyway). There are lots of security and cops, all for good reason.

Thursday night was pretty uneventful, they took blood and started IV antibiotics. I saw the emergency doctor and an Internal Medicine Specialist. Both told me the same thing, that ENT would want to see me and that they would most likely be draining the abscess around my tonsil. They didn't know when I would be admitted or when ENT would see me. So I went to sleep for the rest of the night.

Friday morning I was awakened at 8 AM by a guy with a light on his head (an ENT resident doctor). He had me sitting up and answering questions about my medical history before I was even awake. Then before I knew it he was spraying my throat with freezing. Then he gave me more freezing via a needle to the back of my mouth. And before I knew it he was cutting a 1 cm hole in the back of my mouth to drain the abscess. I'd say it was all over by 8:15. Oh, I also got some fentanyl in there somewhere as well which is a nice morphine like drug. Then he was gone, like a ninja. I will spare you all the gory details in between.

Later that morning I saw my oncologist, an internal medicine specialist and a team of infectious diseases specialists. They all said similar things. They had taken blood cultures and we had to wait to see what they showed before determining a plan for treatment. And also that I would be admitted but apparently they were still fighting over who would give up a bed, internal medicine or ENT. I had also discussed the plan for chemo with my oncologist but everything was up in the air until infectious diseases had a plan to get my infection under control.

That was it until around lunch time when the ENT doctor came back with a whole team this time, 5 of them. They tell me that they have to aspirate my tonsil (which was the size of a small grape). They have to do this for three reasons: One, so that the antibiotics can work better. Two, so that they can send away the pus they aspirate to check for infection. And three, so they can send some more pus away for pathology to see if it's not infection at all but cancer which has spread to my neck. So, while one doctor holds my tongue, another jabs a big needle into my tonsil and roots it around (literally) until he hits a good pus pocket to aspirate. The other 3 just get up close and personal and watch. I wonder if they knew that they were about 3 seconds away from me vomiting over all of them? It was not fun at all.

I was admitted Friday evening and basically spent the next 5 days waiting for the blood and aspirate samples to grow bacteria. They did, and it was determined that I once again have another Staph infection. The sensitivities came back yesterday and Infectious Diseases along with my oncologist came up with a plan of attack today. I was sent home but have to go to Cancer Care once a day for the next 5 days for IV antibiotics. Then on Monday I have to get another CT scan of my neck to ensure the abscess is decreasing in size. I had one a few days ago which showed the abscess had decreased by 70% already, they just want to make sure it's completely gone or close to it before I start chemo again. If the scan is good then I switch to oral antibiotics and start chemo on Tuesday. I will stay on oral antibiotics for the duration of chemo so hopefully I don't get a third bacterial infection in 3 rounds of chemo. I also got a new picc line put in a couple of days ago which is good news. The last piece of good news that I'm still waiting for is the pathology on my pus. It is very unlikely that my cancer has spread to my neck, even more so now that the antibiotics seem to be working so well on the abscess, but it will be nice to know for sure. My oncologist told me that if my cancer has spread to my neck that he will be writing journal articles about me. Anything is possible but my type of cancer just doesn't do that.

It's really nice to be home with Adrienne and Anthony and I hope that this was my last hospital stay for a long time. Unless of course they find me a bed to admit me for my last cycle of chemo, that would be crappy but probably for the best. Thanks for reading this really long and sometimes gory entry.

Cycle 2, Day 22 - Heading back to the Hospital

As of yesterday everything had changed from my last post. The new plan was that I would get a picc line installed on Friday and start chemo on Monday. Apparently the risk of clotting another picc line is greatly reduced because I'm on blood thinners. That's what my doctor had thought and the Hematologist agreed. Of course I still have my throat issue so my doctor ordered a CT scan of my neck to determine whether I have an abscess of fluid stuck in there or not. If I do, then I get admitted to hospital for IV anti-biotics. If I don't, then I guess we try a different oral anti-biotic. Either way, the infection would have to be cleared up before I was to start chemo on Monday.

I went for the CT scan today and just got the results from my oncologist (who's still at work at 6:45 PM dealing with all my issues) and I do in fact have an abscess. So I'm writing this blog entry and then it's off to pack a bag for another stay in the hospital, the Health Sciences Centre this time. Beyond anti-biotics I may also have to get the abscess surgically drained. An ear nose and throat specialist will make that decision. I'm not sure but assume that I will not get my picc line tomorrow and that chemo will be further pushed back. My doctor has once again hinted that we may stop chemo for a few weeks, do another CT scan and see if the chemo has killed the cancer in my lymph nodes and go from there.

I just wanted to post a quick update knowing that I won't be blogging for a while. Thanks again for the nice comments, emails, thoughts, prayers, etc.

Talk to you in a while.

Cycle 2, Day 21 - Another break in the action

I saw my oncologist again today for the 5th time in just over a week. Cycle 3 was set to begin tomorrow but like cycle 2 was, it has been pushed back a week. I am still battling this sore throat. I've been on antibiotics for almost a week and they've done nothing. In fact, if anything it's gotten worse. I have minor pain and pressure from my throat up to my ear and my right tonsil is the size of a small grape. My oncologist is waiting for the swab to come back confirming whether it's bacterial or viral. If it's bacterial he may switch my antibiotic. If not, I guess we wait for it to get better. He may consult an infectious diseases specialist. Either way, as much as he wants to push forward with chemo, if we do, it could be dangerous. I have an infection which is getting no better and chemo will drop all my blood counts again meaning I will have even less means of fighting it. So we wait.

The other thing on the table is whether I get another picc line or not. I probably won't, but I may not have enough veins to get all my chemo and hydration (which will once again be stepped up this cycle to 14 days) through regular IV's. My left arm may or may not be a write off because of the clotting, leaving only my right arm which isn't in great shape either. The fear with the picc line is that it would also clot like my first one did. But because I'm already on blood thinners that risk is greatly reduced. Speaking of blood thinners, turns out I will be on the injections for 6 weeks (I knew this already) and then oral blood thinners for 6 months. I will be switched to a drug called warfarin. Perhaps you've heard of it, it's also used as rat poison. No joke... I love this stuff. Also on the topic of blood clots and the what not, I was going for a chest x-ray the other day and looked at the form which described my condition as "pulmonary embolisms". My doctor had referred to them as small blood clots in my lungs and I had never connected that to the term "pulmonary embolisms". It sounds way scarier when you put it like that.
My doctor is again making changes for next cycle. I was going to be hospitalized but it doesn't look like there will be a bed so that probably won't happen. I will also be getting steroids and hydration everyday for the first 14 days. And we're going to add a new nausea med which also doubles as an anti-psycotic. I feel like I could use some anti-psycotics right now.

I would love to push forward and get this over with, but I do appreciate the break. I feel like I haven't recovered from the last cycle yet. My hope is that this infection is cleared up soon. Right now the anti-biotics are still making me nauseous and it's hard to swallow because of my throat/tonsel so I'm barely eating again. It would be really nice to have a few days of eating well and feeling better before I start again. Then 3 more weeks and it's all behind me.

Here's Anthony wearing the Livestrong T-shirt that his Mom got for him. He turns 2 on Oct 3rd. Anthony and I spend most of our time together lately watching TV or reading books in bed. I keep telling him that soon enough we'll be back to piggyback rides and playing outside, etc. He understands so much and is doing really well with everything. And he has to give me a kiss on every single boo boo (bandaid) I have at least once or twice a day. He's pretty awesome!

Cycle 2, Day 15

I was worried that the blog was going to become mundane and boring by this point. How many times do people want to read "I'm feeling good today" or "I'm feeling crappy today". I know you get it, anyone doing chemo will have good days and bad days, that's expected. But I must say, the side effects I've been getting have kept things somewhat interesting. I also write this blog so that others having to face chemo, especially my specific regiment, can have an idea what it's all about. For them, I think I've covered most of the things that can happen. The one thing I will say is that most people don't have this rough a time, so if you are one of those people reading my blog and about to start chemo, you will probably do better than I.

My doctor, prior to starting chemo, thought that because I was young and healthy, I would fly through the chemo. He said that I wouldn't be asking for more at the end, but that it would most likely go pretty well. He has since changed his opinion, and knowing what he knows now he probably would have recommended radiation instead. So much so that this week he consulted some world renowned experts in BC on how to move forward with my treatment. Again the concerns are my blood clots combined with low platelets, my nausea, lack of veins to actually get chemo into me and the overall effect chemo is having on me. He was debating abandoning chemo after 2 cycles. From there we would hope that the chemo had done it's job in only 2 cycles or we would switch to radiation which again was the other very viable option of treatment. After consulting they decided it wouldn't make sense to quit at this point. I've made it through 2 cycles and just have to get through 1 more. So we push forward as planned next week with the last cycle. The only change is that I may be admitted to hospital for a portion of my next cycle. The 7-10 days which affect me the worst. That depends on the availability of a bed which are apparently hard to come by.

This week has been much of the same. My temperature flares up to 37.9 degrees and I feel very fluish. I take tylenol and for the most part it drops back down and I feel better. It's an ongoing 4 hour cycle. I also have a sore throat so today I started antibiotics in case it's bacterial. I had more blood work today which showed that my neutrophils are back to safe territory meaning my body has means to fight infection. But my platelets are still on the cusp, so we will continue to monitor them closely. I also had a CT scan today of my chest. The good news from the scan was that there showed no signs of damage from the Bleomycyn which is great. The bad news was that the slight shortness of breath and mild cough is probably being caused by the blood clots in the base of both my lungs. The blood thinner injections are the proper treatment for those, it will just take time.

Hopefully I don't have anything new to report for a few days.

Cycle 2, Day 13 - Blood Thinners and Pearl Jam Tickets

I saw my doctor this morning to discuss my blood clots. He had to decide whether I stay on injections or switch to oral blood thinners. Because I still have some swelling in my arm and can still feel the pressure/pain caused by the blood clots, he decided I should stay on the injections. Getting them by injection guarantees I'm receiving the appropriate level of blood thinner. The other factor for cycle 3 is that the drug Cisplatn causes blood clots, so I will remain on blood thinner injections for the next 4-6 weeks.

I was also feeling pretty crappy when I saw my doctor this morning (woozy and nauseous) so he had me head up to the chemo room for a steroid and fluid. He also ordered blood work and said he would catch up to me before I went home. When he did, he didn't have great news. Apparently my platelets are low, right at the bare minimum where it's safe to give blood thinners. Platelets cause your blood to clot and if you don't have any of those and your on blood thinners it's dangerous. If I started bleeding for some reason, it wouldn't stop. And once again my white cell count is way down and my neutraphils are almost non-existent. Again this is expected, it just means I'm wide open to infection until they bounce back. The neopogen shots that I received should speed that up. The biggest concern right now is the platelets, so I will get blood work done every 2 days until they're back to normal. And of course if I spike a temperature of 38 degrees it's straight to the emergency room.

So this week is blood work on Wednesday, chemo on Thursday, blood work on Friday and a chest CT somewhere in there as well. My doctor wants to see if the Bleomycin has caused any lung damage. I feel like it has but who knows.

Also this week in Winnipeg is a Pearl Jam Concert which I had hoped to Rock Out. Adrienne bought me tickets for my birthday before we knew I would have to do chemo. Even if I was feeling up to going I couldn't because the the chemo drugs make me something like 11 times more susceptible to hearing damage caused by things like concerts. So if anyone is looking for tickets:

I have 2 tickets in section 217 at the MTS Centre for the show this Saturday Sept 17th. I'm selling them at face value which I think was $165 for the pair. The seats are pretty good, the first section in front of the stage on the side in the second level. Let me know if you're interested. My email is pcareen@gmail.com I'm probably going to throw them up on Kijiji tomorrow.

That's it for now.

Cycle 2, Day 11 - The Chemo Adventure Continues...

Everything was again looking up as I wrote my last posting. By the time I remembered to actually post it things had changed. I went to bed on Thursday night feeling ok. I had had 3 neopogen injections by now, had eaten and drank some throughout the day and only had minor symptoms from the bleomycin. In fact the only symptom I had was a mild fluish feeling which may have also been caused by the neopogen. Things were fine.

When I woke up on Friday morning I felt like I had been hit by a truck (or maybe just a small, slow moving car). I felt aches and pains in my whole upper body (shoulders, neck, arms, etc). When I got up to use the washroom I felt really woozy and had to lie back down again. All this I attributed to muscle and bone pain associated with neopogen so I took some tylenol, stayed in bed and intended to ride it out. Adrienne left for work at the normal time and her Mom came over to watch Anthony. By ten in the morning it was no better and the tylenol wasn't cutting it so Adrienne's Mom was nice enough to go to the drug store to get me T 1's.

Side note: Did you know T1's existed? I did not. I thought there was Tylenol and Tylenol 3 (T3s). It turns out that there also exists T1s and T2s. The T2s are by prescription like T3s but T1s are over the counter, you just have to ask for them. They have codeine, just not as much as T 2s or 3s.

Around the same time I noticed that my picc line, which had just been given a new dressing the day before, was not looking good (I'll spare you the details). So I called the Chemo department and they figured I should have the dressing changed again. They scheduled me for 2 PM.

Adrienne's Dad said he could drive me and would be over around 1:30, so I pulled myself out of bed around 1 and forced myself to shower even though I still didn't feel great. I noticed in the shower that my left arm and shoulder were particularly painful and by the time I got downstairs and was ready to leave for Cancer Care, my left arm had started swelling. If I haven't mentioned yet, my picc line is in my left arm. The first thing I thought when it became swollen was that I had a blood clot, but I had no idea for sure if that made sense or what you do if it was. I also had no idea what best case scenario was but assumed that worse case scenario was an imminent and massive heart attack or something on the way to Cancer Care. I told Adrienne's Dad to drive fast.

When I got there the charge nurse took me in right away and examinned me. She confirmed that I may very well have a blood clot based on the swelling but I would have to have an ultrasound to say for sure. A massive heart attack was probably not immanent though so I could relax. I went for the ultrasound a little while later and indeed I had clotting. In fact I had "significant" clotting from my neck right down my arm in the vein where my picc line was placed. And so my picc line which saved me from so many needles is no more, a nurse removed it shortly thereafter. And add to that even more needles because now I have to get blood thinners injected to break up my clots. And who gets to give those to me? That's right, my sweetheart. I had to call Adrienne at 4 PM just as her school day was finishing so that she could rush down to Cancer Care and learn how to give me a new type of injection. Now Adrienne has to give me 2 injections per day for the next few days. You're probably wondering why I don't man up and give them to myself? I have no good answer, I just can't do it.

So now I wait for the swelling to go down, hopefully over the weekend, and I see my doctor again on Monday to determine if I keep getting injections for a while or switch to oral blood thinners. There never seems to be a dull moment with this chemo stuff.

Cycle 2 , Day 9 - A little late, I forgot to post til Day 10

I got home a while ago from getting my Bleomycin. As I'm sure I've mentioned before, this one made me nervous after the reactions I've had to it in the past on the Bleo only days. The difference this time is the hydrochortizone injection I received to precede it. It's a steroid which should prevent me from having any serious reactions to the drug. So far so good. I also got another litre of fluid today which wasn't scheduled but which I asked for. My doctor and nurses have been very good this cycle at trying different drugs and adding more fluid to help me get through my "spaced out week". That's the only way I can describe how I feel on the days following my treatments (Days 6-10ish). Again, my ears ring, I feel light headed and weak, nauseous and I can't think straight. The whole "not being able to think" is often referred to as "chemo brain" which I have full on. For example, it could take me 10 minutes to find a Popsicle in the freezer which is sitting right there on the shelf in front of my eyes. Or another example would be like last night when someone called to do a phone survey. I agreed to do it but couldn't understand what they were trying to ask me so I just hung up confused. If you're fundraising and would like to get a big donation from me that I won't remember later, now's the time to call. Forget it actually, I have no idea where my wallet is.

The other change this cycle was the neupogen injections which have been going ok. I felt like I had the flu overnight last night but no major bone pain or anything yet. Adrienne has given me 2 so far.

Speaking of Adrienne, as a teacher she's back to work now and is crazy busy. Her day yesterday consisted of waking up early after sleeping half the night in our son's room (Anthony woke up and wouldn't go back to sleep without her, teething we think?), then going to school and meeting all the new students and parents. When she got home around 7:30 PM she was just in time to put Anthony to bed. After bedtime she had to give me my injection. And then at around 9 PM ish she got to have her lunch and supper which she never had a chance to eat yesterday. And then she had to go and get ready to do it all over again today. I don't know how she does it?

We had also planned to put Anthony in Daycare 2 days a week starting this week but with my immune system issues/concerns we've decided to wait until after chemo is finished. So that means Adrienne's parents have been watching Anthony full time this week and will continue to do so until I'm feeling better. It also means that they have to take me to my treatments and take care of me when I'm out of commission. It's a lot to ask and they've been great.
Another milestone to mention is that the blog has been viewed over 2000 times now. I know that 1900 of those have probably been my sister, but either way it's nice to know that over 2000 times someone has wondered how we're doing. It's also nice to consider how many phone conversations I've managed to avoid with chemo brain by blogging instead.

Below are a couple of pics that Adrienne's Dad took. The first one is Anthony and I having a snuggle before I headed out for chemo this morning and the second is me at Cancer Care settling in for my poison.

Cycle 2 - Day 4

So cycle 2 is in full effect. Days 1 and 2 went fine. Day 3 was a little worse, my nausea started to kick in and I developed a new symptom which I assume is from the Bleomycin on day 2: it can cause "pulmonary fibrosis" or reduced lung capacity. I hadn't had any of this until Thursday evening when I started to find it hard to take a deep breath. Every time I try to take a relatively deep breath my lungs hurt at the top of my chest and I cough. This again is an expected symptom, I had to do a baseline pulmonary test prior to starting chemo to determine my lung function before compared to after chemo. They may have to give me drugs at some point to repair my lungs but hopefully not, it's starting to feel better already actually. And after all this is finished my only limitations should be no scuba diving (no problem, I'm afraid of most things in deep water) and no oxygen bars (no problem, I'm not cool enough to go to places like oxygen bars). And unlike Lance Armstrong I will probably not go on to win 7 Tour De Frances after surviving testicular cancer. He actually did a different chemo regiment which did not include Bleomycin so that he could still race afterwards.

Today is day 4 and as expected my nausea is back. I would say it's slightly worse than last time. It also doesn't seem as if the new nausea drugs are helping any more than the last ones but maybe without them I would be in even worse shape, who knows? One of the new drugs is supposed to help with delayed nausea, as in the nausea I get in the later days of chemo and the few days following, I think. The extra fluid they will be giving me this cycle should also help.

My sister left to go home last night which was sad. It was nice to have her around. She came and sat with me at chemo for a couple of days which meant Adrienne could go and get her classroom ready for school on Tuesday which was great. I talked to Ruth-Ann this morning and apparently they had to replace the tire and brakes on her airplane before they could leave Winnipeg which meant she would have missed her connection to St. John's but luckily the pilot of the flight from Toronto to St. John's was on her flight from Winnipeg so they had to wait. So instead of getting into St. John's at 3:30 AM they arrived at 4:40AM. A late night for my sister who had been up since 6 or 7 AM Winnipeg time.

I doubt I will be up for blogging in the next few days based on how I feel right now. It's really hard to say though. The nausea may be better in the next few days than it was last cycle or it may be worse. The other thing I really don't look forward to is the neopogen injections (to boost my white cell production). I've been chatting with other patients and some have said the bone pain keeps them from getting out of bed some days. These people are older and get more injections than are planned for me but again, who knows. As one nurse put it, "it's worth it considering you could get an infection which could kill you before the cancer does". This is true I guess. Either way, they may put me out of commission for a little while. On a positive note, this should be the second last Saturday morning I spend at Cancer Care and I think the last long weekend.

Anyway, Adrienne may post something for me if I feel terrible or maybe I will post again in a few days.