Got another fever.

Alas, a got another fever last night. I had to re-attach the bile bag, and now I am on oral antibiotics. I spent the whole morning at the hospital. We checked my blood and my white cell count is back into the normal range, so I am not in so much danger as that night I went into emerg and then the ICU. The bile culture results will take longer.

Another annoying development is that my feet have started to swell up all the time. Presumably due to the tumour pressing against the portal vein.

Surgery still very unlikely.

I had two meetings over the last two days. Yesterday I met with my Radiation Oncologist, and today I met with the surgeon who took out my left stent. Lots to report about that.

Yesterday, I got a copy of the radiologists report, and I looked at the scans myself with my Oncologist - looking at the difference between March and last week. First of all, radiologists must perform some kind of black art to make sense of all those blobs of gray. I hadn't seen my own scans before, but I assumed they were a little more clear. Things like large cancerous lymph nodes are easy to see, but the primary tumour in the liver is just some darker shade of gray with medium gray boundaries. My Oncologist wasn't that great at interpreting the scan, and I certainly had no idea. Generally the primary tumour did seem a little smaller. I guess. Very hard to tell.

Meeting with the Surgeon today was very informative and useful, but also quite depressing. As a surgeon he had much more experience studying CT scans, and was able to say that the medium gray areas around the dark gray of the tumour were the uncertain part. Maybe they were also tumour, or maybe they were swelling or temporary damage from the radiation. He did say it looked to him like it was about 1cm smaller - which is what the radiologist's report says. So vaguely, from 5x6cm down to 5x5cm, which is still very large to have in the middle of your liver. So he agreed with the Oncologist that we should wait a few weeks before doing another CT scan to see if these medium gray areas go to light or dark. I now have a scan scheduled for about 3 weeks from now.

The really depressing part was more of a re-iteration of the things that were told to me back in early March. I am very unlucky to be so young with an otherwise healthy liver and get this cholangiocarcinoma (it is very very rare), and I am doubly unlucky that it is positioned in exactly the worst spot it could be, in the middle of my liver pressing right against and encasing two very important blood vessels, the hepatic artery and the portal vein. So his opinion was that based on the latest scan, there was still no way a surgeon would go in and try to remove it. It was much too big. And he doubted that things would show up as improved enough in the next scan too. Still, he said he would get other surgeons to look at the scans (he wouldn't be the one who would resect) and get their opinions too.

Another piece of bad news is that there is a tumour marker, measured from a blood sample, called CA199S. Apparently in a normal person this would be about 30 U/mL. In early March, before treatment started, my level was about 6500. Last week it was measured at more like 15000. Now this may be a spike due to radiation, so before the CT scan we will check it again.

We also talked about growth rates, because I really have no idea how fast this thing is growing, and thus, assuming no further treatment (which is unlikely - I'll do something, I guess), how long do I have to live? He said a typical doubling period for cancer (not necessarily cholangio) might be 120 days. Of course, I don't know how large a tumour I could tolerate in my liver before things really go awry in my system. Needless to say, all this news is all hard to deal with. But I am glad I am informed.

So in other news, because the tumour is pressing on the portal vein, I will have to continue with the daily Fragmin blood thinner injections. Probably for the rest of my life.

My Oncologist tells me that my stomach and eating problems should settle down in a week or so. I hope he is right.

Any finally, the only real good news, I was able to remove the bile bag. I still have the tube sticking out to do daily flushes of saline to make sure everything is flowing well. If I ever get feverish, or swelling, or jaundice, I will have to attach the bag again right away. It feels good not to have it there smelling and looking disgusting. So yay! - a modicum of extra freedom in my life.

I need another CT Scan

Looks like I should probably get another CT scan, since the last one was unclear to the radiologist. I guess to the untrained eye it looks smaller. (I should see this thing for myself!) When we scheduled the CT scan originally, it was going to take place about 10 days after my treatment was done, but then all those complications happened that kept delaying my doses of radiation, so in the end the CT scan happened when I still had 2 doses to go. This means that the liver and surrounding areas would have been still been inflamed (probably still are), so it is apparently hard to tell the difference between inflamed tissues and a tumour. It may have also been unclear because I vomited up most of the contrast liquid I was supposed to drink before the scan.

Thus, when I meet with my Radiation Oncologist tomorrow, we should definitely schedule another scan. They are very busy withthe CT machines, so I hope I can get one reasonably soon. I also need to ask my Oncologist how long I need to keep injecting myself with Fragmin (blood thinner) - can I stop now? is this for the rest of my life? It depends how much of my problem was due to chemo and how much was due to the tumour choking of the major blood vessels going to my lower abdomen and legs. All I know, is that it is an annoying part of my day. But I will certainly live with it to avoid more clots that a) disable me, and b) could move into my lungs again.

I am also meeting with the surgeon who did my ERCP to remove my left stent. I'll ask him if I can cap off my bile bag for now. He already said (depressingly) that I could never remove that external drain, but I might be able to cap it off until some emergency happens. I flush it every day, and it seems fine - draining both internally and externally.

I am trying to move toward a semi-normal life as much as possible. Now that treatment is over, I am in a hurry to achieve some modicum of fitness so I don't feel like the walking dead so much. That said, apart from moving around the house a bit more, I haven't done much towards that goal. Although, it was only 3 days ago, on Thursday, that I was knocked down in bed, vomiting, and feeling terrible, so I should give myself a small break.

A parting slap.

Yesterday, apart from being low energy, I threw up most of what I ate, starting getting diarrhea, and couldn't lay down without the acid reflux rolling up my throat. Fun times. It may be the last gasp from the radiation. After all, it kills good cells just as well as it kills cancer cells, and it certainly hit my stomach somewhat. Or perhaps it is coming off all these strong IV antibiotics that I have been on. Yes, the nurses are no longer coming twice a day to give me IV drips and hook me up to an IV pump at night, which is a relief. Or perhaps it was just something I ate. Who knows. I feel slightly better than last night, despite my terrible sleep.

I have 4 follow-up appointments with various doctors over the next couple weeks. The radiation burn on my abdominal skin is turning into a tan. In fact, it hurts below that in my lower abdomen because that is where I jab myself with a needle every night to inject the Fragmin.

CT Scan, good news.

We haven't heard the radiologists report yet, but the initial look at the CT scan (done this morning) seems to suggest that the tumour has shrunk. I don't know by how much really, nor do I know if it shrunk along the hepatic artery or elsewhere at the edges.

The next step after getting the radiologist's report, is to shop that out to surgeons to see if there is a competent one willing to go for it, and remove the tumour in this new state.

I don't want to get my hopes up too much. But either way, it is nice that some good came out of my 13 week descent into hell. I know this is good news, but is hard to get too excited frankly, as all I want to do is sleep. All the time.

I have one more radiation to go. I didn't throw up today from the radiation, but I did from trying to drink all the CT scan fluid. The acid reflux is getting worse unfortunately. But I am coping. Right now I need to take my evening pills, inject fragmin into my stomach, and flush my bile drain, and then I can go to bed again.

4 more radiation doses to go.

I had one today and yesterday because my blood levels came back up to low but "acceptable for continued zapping" levels. On Friday, Monday & Tuesday there was a big hassle with trying to get a decent x-ray of me using the same equipment that I get my radiation doses from. They said I had lost weight since the original measurements, which were 13 weeks ago now. No kidding. Why did they just notice now, I wondered. So they were a off in their aim, but no one seemed concerned except for me. In the end, yesterday, we finally got a decent x-ray, and we were only a few mm off, so I was relieved, and we started the doses again.

Now I have 4 to go. Next Wednesday should be my last one. Unfortunately I vomited today from the radiation for the first time (a few hours later), so I will have to be more vigilant about taking anti-nausea drugs just after I get the dose. Also, the radiation seems to have caused/worsened Esophagitis, which makes it painful to eat - but not impossible.

I haven't measured a temperature over 38 since Monday night (spoke too soon that day), so I am hopeful that my antibiotics can end as planned next Tuesday. Which will be one good thing about Tuesday. The annoying thing is my CT scan which was supposed to come a week after radiation ended, but is now falling a day before it ends, is scheduled for 7:20am. I was never much of a morning person, but lately I need every minute of sleep I can get. So I can look forward to being to total wreck when I meet my oncologist later that day (after radiation) about the result. Just ideal for receiving heavy news.

Got another dose of radiation today.

Despite the fact that my neutrophils dropped to 1.3. My Radiation Oncologist rolled the dice and decided this morning I was fine to have radiation, but once again another round of blood work tomorrow morning to see if I can continue. My radiation schedule turns out to have supposed to be done this Thursday, but obviously with all these interruptions I am behind. How far I do not know.

Now some good news. My platelets are up. I think they are 103. And my hemoglobin crept up to 116. Also, the last time I have measured a temperature over 38 was Friday night. I must admit it hit 37.9 at some point, and I took Tylenol so I might have avoided one spike that way, but generally the fevers seem to be getting less frequent. They had better be less frequent because with neutrophils of 1.3 I am not fighting off much on my own. I have no desire to go back to Emerg with another brutal neutropenic fever.

Remote medicine.

Well, my meeting with the doctor today went well except for the absence of the doctor. He called it in. So I had my vitals (blood pressure, temperature, heart rate, O2 sats) checked and they were fine. Today, so far, I haven't had a fever, although I think the odds are near zero that I have seen my last fever spike. We also checked my blood again, and it hadn't moved much since yesterday, so the doctor made the call that I was not in danger of becoming neutropenic and so I didn't get an injection of neupogen instead they just let me go back home as-is. So, here I am. The nurse is still coming twice a day to hang my IV antibiotics, and to hook me up to the antibiotic pump for the night, and change my dressings.

Still getting fevers

Unfortunately my white blood cell count, and specifically my neutrophil count dropped again today. I was wrong yesterday about the white bloodcells being 2 - that was the neutrophils (the important kind of white blood cell) which have dropped to 1.5 today. I wasn't allowed to have radiation because of that.

I am still getting fever spikes about 38.2 every day despite all the antibiotics. So I am extra worried that my white blood cells and neutrophils are dropping. They should be raised to fight the infection. Because I was worried, I talked to a doctor after not having radiation, and he thought I should probably become an inpatient again. We will see. The whole thing is highly depressing, but I do not want to end up in ICU again. Tomorrow I am going back to the same inpatient oncology ward to meet with the doctor who discharged me, and he will examine me and make an evaluation.

Back online.

After many phone calls and many hours on the phone, with details too annoying to mention, I finally got Bell-Sympatico to set up a working connection here. I am back online.

On the medical front, my blood was tested this morning and my platelet count is still 68. Normal is 150 to 350. Also my white blood cell count is low again. I think only 2. Normal is 4-10. This means I need to keep checking my blood every morning before radiation. If my white blood cells drop below 1, or the platelets drop below 50 then I have to stop radiation again. Ok, I just put a reference to normal blood levels in the right column of this blog. My hemoglobin is ok. It is 114.

As far as the antibiotics I am taking, the way it works is this. A nurse comes in the evening, gives me one bag of cefazolin, then she attached me to a mini pump to inject half of the vancomycin (which takes one hour), wait 11 hours, and then inject the other half. This way the nurse doesn't need to sit around for an extra hour waiting for that one. The down side is that I am tethered to a pump which is in a bag somewhere between a fanny pack and a laptop bag. For the last few days, due to scheduling, I had to take it to the hospital with me for radiation. Still, this is a very minor hassle compared to what I went through as an inpatient. Especially up until they agreed to let me take something for my diarrhea when I finally came through negative for c.difficile.

I need to take do this for 2 weeks. I hope the antibiotics work. I am still getting minor fever spikes. Usually in the evening.

I have no idea how many more radiation doses I am scheduled for. Maybe 8? I hope my blood levels go back toward normal and I hope I can continue with radiation to get this damn treatment done.

Finally, on the pain front, recently, I have had to take more breakthrough pain pills - a troubling sign.

Getting out of hospital.

I got some great news from the doctor looking after me on this ward. He said despite the occasional temperature spikes, the trend looks positive, so I can go home and switch to having my IV anti-biotics there. So, he just scheduled CCAC (home care nursing) to come to the house twice a day for 2 weeks to hook up the antibiotics to my PICC line. Bar any unforeseen events, I should be able to discharge and leave within an hour.

Other good news is that my blood transfusion worked well to bring my hemoglobin up from 89 to 110, which should really help with my general energy level, but my platelet count is low, so I still can't resume radiation treatment yet.

[aside, I swear there are no less than 8 people talking to my room mate on the other side of the curtain right now - relatives, staff, etc - a total a cacophony, and it was the same yesterday.]

So, when I go home I will actually be offline for a a day or two, since Bell-Sympatico completely screwed up the transfer of the internet when my parents moved last Friday. They have the same phone number, just a new address. So yesterday Sympatico said it would be "24-48" hours before they could remedy their mistakes. Meanwhile my parents have been offline since last Friday.

So, that is about it. I am happy to be discharging. Signing off!

Still in hospital!

This is me again (and no longer my parents). It turns out there is wireless internet access (for a fee) on this oncology ward. I am still in hospital, and I hate it. It has been a week now, and no end in sight. They won't let me out of here until 48 hours after my fever goes away, and as of an hour ago I still have a fever. It had gone down for the day, but it just came back again.

After a weekend of the fever not going down they switched up the antibiotics and now I am on three of them. Also my white blood cell count is low, as is my hemoglobin. For the hemoglobin, they are giving me a blood transfusion (I am getting the 2nd half right now). For the white bloods cells I'll get some kind of injection.

Last Tuesday was total hell. I had swarms of people around me. Constantly poking me and doing everthing to me at once. For a while it seemed as if they announced to the whole hospital that there was a patient who need his stomach uselessly poked and prodded for as many times as possible, not to mention asking me my whole goddamn clinical history. In Emerg just before I got transfered under Intensive Care, they were trying to put another IV into me, as fast a possible, which meant two nurses were jabbing me on both arms at once. Finally they called in someone who was better at it and got the 2nd IV in. In intensive care the multiple wires and tubes connected to me were annoying, but the worse part was wearing the forced pressure mask that forced air down my throat. Kind of like wearing scuba gear except way less comfortable and much louder. Meanwhile doctors and nurses kept asking me questions while I was wearing it, so I had to scream to make myself heard. It was a nightmare. That said, it probably saved my life, or at least saved me from going into a ventilator with a fat tube shoved down my throat.

Now a week later, I am highly depressed and often annoyed as this place is always noisy and interruptive, but at least I am not in intensive care. It requires a lot of effort from me to attempt to be civil to people. I have zero desire for visitors and I don't want to talk to anyone, I think because it just reminds me that I am here and focuses and sharpens that fact into my face somehow. I'd much rather just distract myself by reading or, if possible in the place, sleeping.

I am done with chemo. There is no way I will attach that 5fU pump again just for another couple weeks of it. It was chemo's fault that I was so weak and so easily susceptible to infections. I can't wait for that poison to work its way out of my body. Radiation has been on hold for more than a week, but if my blood levels get better it might resume tomorrow. I do want to finish that, because unlike the chemo, the radiation might actually be doing something positive. Who knows.