Turtlewise

So let’s see, the last time I posted something was after I got out of the hospital for incessant vomitting and overall weakness of the body and after my mother went back to Japan. Though I wrote how I felt better the next day, things never really got better, unfortunately…

The weakness and lack of appetite along with the nausea came back and escalated to the point where I felt real weak and sick. Since no one was home, I called the ambulance to take me to the hospital. I was still able to walk up to the ambulance. Although I was weak, not eating anything, because I was not throwing up, the hospital could not find a reason to admit me, so sent me back home. A couple of days later, without being able to eat, I was extremely weak, to the point where I had trouble getting up and walking to the bathroom. I was also throwing up by this point, which did not help my body that was already extremely weak. That evening, despite my wife and her friend being around, I had to call the ambulance to come haul me up the stairs and to the ER. While in the ambulance, the paramedic attending to me tried to put in an IV in my arm, but I guess due to my extreme dehydration, was not able to find a decent vein. So, they put one in my foot. Got to the ER, and this time, I was admitted. For the next few days, I was not able to eat orwalk around at all. At least the IV was transferred to my right arm after a few days, but by then my foot was hurting from the needle. In case I have failed to mention, I started taking Celebrex once I was out of the hospital in July. Apparently, this (and Tamoxifen, but I highly suspect Celebrex was the sole culprit) was the cause of the loss of appetite, nausea, and vomitting (just like Sulindac). I quit taking Celebrex and Tamoxifen (to be sure). After a week or so, I was eating regular food again, and was able to keep the food down. It was not for a few more days before nausea was completely gone, but with all the nausea medicine, it was not much of a problem eating by that point. I was discharged after (I believe) eight days.

All seemed well, and I was happy back home, even if my edema made my legs like elephant legs and my scrotum the size of a grapefruit (and let me tell you how hard it is walking around with legs and a scrotum like that!). After a few hours, I realized I was not able to breathe deep — all the way until I was satisfied. I was only able to breathe deep/all the way once in a while. My wife called her PCP and asked him for some advice. He told us that the worst case scenario could be a blood clot in the lungs, and that I should go to the ER. So off again to the ER, though this time my wife drove me, since I was at least able to walk up the stairs. At the ER, I was given an option of being admitted or going home, as they thought it could just be that I had a hard time breathing because my lungs got smaller during my lengthy stay at the hospital, and all I had to do was breathe deep as often as I can to puff up my lungs again. Well, needless to say, I was not going to take any chances. Even if it was just overnight, I decided to be admitted. The next day, I went for a CT scan. Turns out, I had pulmonary embolism (the same thing Serena Williams had — a blood clot in the lungs). My previous stay at the hospital where I hardly got up and walked around (more like, couldn’t) caused a blood clot to form in my legs (the result of the ultrasound showed that the clot originated in the right leg) which then traveled to my lungs. If I ignored my difficulty in breathing deep and decided not to seek immediate medical attention, the clot could have traveled to the heart or the brain and have been fatal. They started me on two types of blood thinning medication, one a shot and the other a pill. The idea was to figure out how the thinning/coagulation of my blood was going. I was given the shot since it had a wider range of INR (International normalized ratio). But eventually as my INR normalized I was to stop the shots and take the pills alone which by then should have been adjusted to the right amount of dosage. This I have to be taking continuously for three months. I am not able to eat more than half a cup worth of food high in vitamin K (think dark green leafy veggies), so every time I see some dish that looks tasty, but later find out that it contains veggies high in vitamin K, I get disappointed that I have to wait for a few months. The blood thinning agent was merely for thinning the blood to prevent further blood clots from forming. I would have to wait for the already-existing blood clots to dissipate. Until then, I will be having trouble breathing deep. So when they discharged me after a few days of being administered the blood thinners, (according to the hospital, there is no sense in keeping me there since I already have the blood thinners, and there was no other reason for keeping me there) I was still having a hard time breathing all the way. So, after a few hours at home, I started feeling uncomfortable not being able to breathe properly, and decided to head on back to the ER once again. At first, since they could not come up with a reason to admit me (since everything seemed to be going fine), they put me in the observation unit. But they somehow must have found a good reason, because the next day, they admitted me and transferred me to a proper unit. Being in the hospital definitely helps me with my breathing. Although I was still having difficulty breathing, the idea of having nurses round the clock certainly helped me ease my anxiety, which was the cause of my return to the hospital this time around. I went home after a week with anxiety pills. This time, I had a hospital-style bed waiting for me, courtesy of my insurance company. I also have a home care nurse who comes to change my pouch so that my wife does not have to burden herself anymore.

Being home is nice, but does not make anything any easier. My edema is still plaguing me, making it hard to walk around, bend down or squat without the stockings. Compared to the time I was discharged, it has become much better now; it does not swell up as much as quickly as it did before even without the stockings. At first, it was really bad, to the point where standing or sitting (basically any position where my legs are not resting horizontal) for half an hour (w/o stockings, of course) would cause my legs and scrotum to become swollen to the point where the legs would be so stiff and my scrotum would prevent me from walking with my legs closed. Thus, everytime I was done taking a shower, I would have a hard time getting around until my stockings were back on me and I got to lie down with my legs elevated. It took maybe about half a day for the swelling to recede. All that liquid that collects in the legs and scrotum comes out in the form of urine, and those nights after my body swelled up, I was urinating every half hour or so for the whole night.

On top of the problem with the edema, I now occasionally go into what I have decided to call a ‘partial coma’. This is where I simply cannot stay awake, or even if I am awake, I have a hard time keeping my eyes open. On top of that, my body is void of any energy, to the point where I have a hard time standing up even for a few minutes. Even as I am lying down, I barely could use the phone to make calls, and answering an incoming call is a real hassle. It lasts for about 24 hours, then all of a sudden, my body returns to normal as if nothing happened. It is almost like waking up from a horrible nightmare. At first I thought it might be a side effect (or rather after-effect) of the anxiety pills, but since it did happen even after over a week of staying away from the anxiety pills, the cause seems to lie elsewhere.

Anyway, the main thing is that I am home and that although there are still a few bumps here and there, I am recovering slowly but surely.

Take care all and watch out for my next post (whenever that may be)…

Whoa! It’s almost a month since my last post. It will sound like some pathetic excuse, but as usual, I do have excuses. First, I was in the hospital (again!) for five days. Then my mother (and my aunty which was a surprise) came to visit. The main reason for the visit was to take care of me while my wife and daughter visited the mainland for 16 days. Of course she did not come right away, so I was on my own for a week. I am not sure what caused my hospitlization, but I have a feeling stress was certainly a part of it. With my current body condition, I was very worried even before they left about being able to take care of myself for a week until my mother arrived.

What happened was nothing but a sequence of ugly events. First, I attempted my first step to weaning off the patch completely. The first step was to keep the patch on for two days, then keep it off for a day. Needless to say, I suffered for two days from the withdrawal. At this point, I decided I was going to postpone the weaning off process until after the anti-depressant kicked in. It was around the same time I lost my appetite. For two days I did not have any desire to eat. I had to force food down my throat to avoid dehydration and malnutrition. This went on for two days. On the second day, I also felt nauseous throughout the day. Late that evening (closer to midnight), out of the blue, I started throwing up incessantly. I thought at first it was because of something I ate. But after throwing up my stomach fluid, I realized it was something else. I started drinking water to try and calm my stomach. After a few hours, my stomach did finally calm down, but I still felt nauseous, lousy and weak. The next morning (though I did not get much sleep because of my throwing up), at my PCP’s suggestion, I headed on over to the ER on an ambulance. As usual, my stay at the ER was in no way pleasant. I had to wait for over two hours before finally being transferred to a room (at least I was lying on a gourney while I waited, since I got to the hospital on an ambulance), another one hour plus before getting some pain medication and nausea medicine along with some liquid to aid me with my dehydration. They did not do much testing except for taking blood and urine samples, but they still admitted me (at around 9PM, so I was at the ER for a total of 10 hours). My mother was supposed to arrive on Tuesday, July 19, the day I went to the ER, but her flight was postoned due to the typhooon, so she (they) arrived on Wednesday instead. It was actually better this way, as I was able to email her my situation before she turned her phone off and call my friend in charge of picking my mother up with the appropriate information of what to do. For the first two days, I was getting blood drawn every 6 hours. But at least I was feeling better. I was walking around when my mother got to the hospital. At first, I saw a tiny Japanese lady whom I recognized as my mother. But I saw another petite figure and it took me a few seconds to realize who it was. This was a total surprise, since my mother spilled no beans about my aunty tagging along. For the next few days until I was discharged they stopped by the hospital every day to see how I was doing. The first couple days, as I said, I was feeling better. But after a few days, I started feeling weak and lousy again, losing my appetite along the way. The doctor was ready to discharge me, but I was still feeling weak and my appetite was not present in me, I asked for one more day. At least the extra day helped, and I felt a whole lot better. Of course better is not quite the same as ‘fully-recovered’, so I was still feeling slightly lousy. But I guess resting at home (especially where there are two people who are right there to help out with everything) for one night can do wonders. I felt as good as I did before everything went down south. I only had one day to enjoy with my aunty before she headed home, but nevertheless, I did get to spend time with her outside the hospital. As for my mother, she stayed for another almost two weeks (just left yesterday) so I did get to spend some quality time with her.

While I was in the hospital, I somehow seem to have managed to wean off the Hydrocodone and Tramadol without quite realizing it. After discussing with the doctor, I decided to up the dosage of the patch back to 50 micg since the idea is that I will always be plagued by pain, and take Percoset for breakthrough pain, and ditch the Hydrocodone and Tramadol. On the canister of this Percoset, it is written Oxycodone and underneath ‘generic for Percoset’. I was confused what exactly it is that I was taking, but it finally got clarified at my visit to the PCP’s office. What I learned is that Oxycodone mixed with Acetaminophen (found in drugs like Tylenol) is called Percoset. I am very careful this time not to get myself addicted, so I stick to the ‘one pill every six hours’ written on the label, and even then try to limit taking no more than two in a 24 hour period (three if absoltely necessary, but hasn’t gone that far yet). So far, so good; I do not think I am addicted. I can tell when I experience pain, it is my body expressing itself and not the pills. So the only unnatural pain I experience now is the pain I get from the patch every three days. Not too bad!

My wife and daughter came back a week and a half after my aunty left. Whatever the cause may have been (I suspect something  to do with my emotions), the day after they came back, I was stricken by that same weakness and loss of appetite I experienced while in the hospital. Who knows, maybe I was happy and relieved they came back safely, and all the stress that was still in me got released all at once?! It took me pretty much the whole day to fully recover. This, however, was not as bad as what I just experienced yesterday, on the day my mother was going home. I felt lousy and weak as soon as I got out of bed and had no appetite what-so-ever. I desparately wanted to go see my mother off at the airport, so I pushed myself. Roaming around the airport like a zombie with a huge pouch underneath my T-shirt I got stopped by a TSA agent. I explained to him everything, and he even suggested I sit on a wheelchair. Unfortunately, that is not quite enough for these people, so as I sat on the wheelchair with my family, I got visited on several occasions by several security officers asking me to give them all my personal information. I didn’t mind, as I knew it was bound to happen walking around the airport like a zombie with a bulging artificial-looking stomach concealed under my shirt. Anyway, I had a miserable day yesterday; woke up today not fully recovered, but at least regained my appetite. As I write this, I am feeling much better.

I also realized that my edema is back again. Edema, for those unfamiliar, is the swelling (especially of the legs and genitals) due to liquid collecting there. Since I learned last year that one of the causes of edema is dehydration/malnutrition, I was not surprised by its recurrence. Currently, I am clad in a pair of stocking, lying down with my feet elevated. Stockings, which helped me tame the edema last year as well, is a great weapon against edema. Because it fits snug on your legs and also helps with the blood circulation, just wearing allows you better mobility than when not wearing it. When the legs swell up, they tend to stiffen up, thus making walking around in general a tedious task. But with the stockings, it feels though I do not have any edema. I do not know how long it will take for the swelling to go away, but I do have a vague recollection it took quite some time last year.

First thing first. The withdrawal symptoms from the transition (i.e., 50 to 25) finally seems to have tapered off. I use one more patch, then I start the transition from patch on 2 days/off one day on Thursday. Not really looking forward to it, but I must go through it. My wife’s friend (who went cold turkey from a 75 mcrg patch) suggested using an anti-depressant to cope with the anxiety and what not, so I decided to try it out. I have been taking it for two days now, but I am still not all too sure it was the right idea. It takes at least two weeks, apparently, for the effects to kick in, so at least for the patch, it seems I will have to rely on the other pain medications. As for getting off the anti-depressant, I have no clue how that is going to work. I will have to wait and see what I am supposed to do when the time comes.

I learned that certain stores do sell curcumin pills, so I decided to check out Whole Foods. They had one that looked good, so I got that to get a head start with taking curcumin. In the meanwhile, I got the two bottles recommended by one of the group members from the Gardner’s/FAP group. So I am good for the next two months or so. Taking 1500mg/day is recommended, and since each pill is 500mg, I take two pills in the AM, and one in the evening. After reading some more stories, I learned that curcumin must not be taken on a full stomach, nor an empty stomach. It is recommended you eat a little at mealtime, take the curcumin, then continue eating, or to have some kind of light snack then take the stuff. So I take my curcumin with one or two bananas. I understand if you take curcumin without any food, you burp up some kind of orange gas…

So I am currently taking Tamoxifen, Celebrex (for which the side effects seem to have tapered off – so much better compared to the side effects I experienced when taking Sulindac or Gleevec), and Curcumin to help with the tumor and polyps. Unfortunately, I still do not have a GI doctor. I need to call a few more places next week and have my fingers crossed that I will find someone, otherwise I might have to find someone on the mainland, or even fly back to Japan to get my colon scoped (this was the term constantly used by the GS/FAP group for getting a colonoscopy). Of course if I ever do decide to take out my colon, I will have to go to the mainland one way or another, as there are no doctors here in Hawaii capable of performing such feats (remember, in my case, my colon has been pushed all the way to the back of my stomach. On top of that, the tumor is blocking the way to the colon). Though I am struggling to find someone who would perform a colonoscopy (or simply finding a GI doctor), I am quite curious to find out what it currently looks like in my colon, and what it would look like in a few months as I keep taking Celebrex and Curcumin.

We have also been looking into something called Rife machine. We visited a doctor who has a machine to learn more about this machine and also experience it first hand. We are hoping to buy one of these machines that the guy is selling. It is a used (despite only being used a few times) one being sold for $5000. So if we want one, we need to come up with $5000. Anyone have any ideas where or how? If the machine works, great. Even if it doesn’t, I can always sell it and get back some of the money.

Also if there is anyone out there who knows of healers, let me know. I need to ask them how to reverse a mutated gene.

After two consecutive weekends of trying to get off the pain killers (and failing miserably), I am trying to clean my body of the Fentanyl patch. This time, my PCP has come up with a plan: I drop the dosage from 50 micrograms to 25 micrograms, and stay on it for 2 weeks. I then use the patch (25) for two days and take it off for one (patches are effective for 72 hours). After a week, I use the patch for one day and keep it off for two. I do this for a week, then stay away from the patch completely.

So I started last Wednesday. Day 1 (or rather Night 1 I should say, since I change my patches at night), a day (roughly 24 hours) after I switched to the 25 microg patch, I start experiencing immense pain even if the Hydrocodone should be working. Took a while, but realized the pain is the first step of the withdrawal symptoms. I went through it the last two weekends when I tried to stay away from the pain medication. I managed to get to sleep. When I woke up in the morning, the pain was gone, but I was quite wet from my own sweat and felt slight anxiety and restless. It was nothing major, though, especially compared to what I would be experiencing the following day. I was able to make it through the day without much trouble and with the help of the other pain medication. Ironic as it can sound, the other pain medication actually helps calm the body and mind down (at least it does for me). The next morning, I noticed my body sweating a lot again. That is what initially woke me up. I tried getting back to sleep, but I was not able to. Anxiety, restlessness, and nervousness was plaguing my mind. I tried to calm myself down and go back to sleep, but was not able to. After struggling for a while, I sniffed on some lavender oil (lavender has calming effects). It did calm me down for a few minutes, but everything came right back. I tried taking my pain medication, and it did help to a certain extent, but it unfortunately did not calm me fully. It in fact took a few hours for my body to feel more comfortable and relaxed. We went driving around that day, and I think being out of the house further helped me cope with the withdrawal symptoms. While my body is going through the symptoms with no help (i.e., no other pain killer helping), I literally cannot do anything. My mind is too restless, I cannot even sit and eat! By night time, my mind and body calmed down to the point I knew I was back to normal. I put on another 25 microg patch thinking that the worst for now (i.e., the transition from 50 to 25) is over, and next time I will have to deal with this whole ordeal again is when I start the 2 day on-1 day off portion of the detox.

It came as a total surprise to find out that I might have to go through the pain, anxiety, and all that again. The night after placing a new 25 microg patch on my body, I felt pain again (albeit not as intense as three days ago) despite taking Hydrocodone. I was afraid for some reason I was going through a second round of withdrawal symptoms (I am not sure how the withdrawal works with the patch, I might have to ask my PCP about it). It was not as intense, so I was able to relax better, but nevertheless, it was still disturbing to have to experience all that again just three days later. So, the morning after the pain, my body sweated more, I felt slight anxiety and restlessness, and today, I felt even more anxiety and restlessness. As I said, it was nowhere near the intensity of three days ago, so I was (with the help of Hydrocodone) soon able to calm down. I am wondering if I have to go through this again, or if this is going to be it. All I know is that when I go through withdrawal (at this point I can say from which ever pain medication it may be) I experience excessive sweating, chills, runny nose (though this can be from Celebrex), weakness, anxiety, restlessness, and nervousness. Well, one more week ofthe 25, then starting the 2-1, and I guess that is when I will experience terrible withdrawal symptoms again.

Now in regards to the other two ‘evil’ pain killers I must eventually deal with, my PCP said to just gradually take less. But the bottom line is that I sure will go through withdrawal symptoms and that is where I need help the most. I really need to talk with my PCP so that she can think of something that will help ease my anxiety and stuff. But for now, Hydrocodone does seem to help me out.

So, yet another two weeks have gone by. A lot has happened in these two weeks, and I should have been posting more regularly. So, let me go back a while to a couple Thursdays ago. I had a doctor’s appointment (the surgeon), and I had the ever lovely wound care nurse come in to try a few options (i.e., pouches/bags). Well, found out the hard way that nothing else seems to work. so, we put on the same old pouch with the lid. Before putting on the pouch, I had the surgeon burn the meat around the tube, as I thought that the area was inflamed (not infected), and that should help with sharp pain. It must have been the case, as I have not experienced any sharp pains since. In regards to the pouch, this time I asked the wound care nurse to try putting on the bag in a way where it only covers the protruding tumor so that I can cover the tube with the other trusted pouch, and access the tube area more freely. After fitting the pouch on the tumor vertically and putting a separate pouch on the left side, I thought to myself, this is going to be great. I was wrong… very wrong. The lid failed so quickly, I struggled to contain the liquid that was slowly leaking on my way home on the bus. Luckily the leak was not so bad, and did not have the stench of the necrosed tumor (the left side). I am not completely sure what the cause of the failure was, but I have a feeling it had something to do with the direction the pouch was facing and the shape of my abdomen/tumor (the whole thing). When the pouch was put on, I noticed the sides were caved inwards and the top and bottom caved outwards due to the shape of my abdomen. Normally when the pouch is put on diagonally, this does not happen. So I think, the top and bottom that caved outward got pushed open due to some kind of pressure. Once the lid got wet, the adhesive was weakened, and no matter how much I tried to dry the pouch, the lid no longer adhered to the pouch properly. Later that day after my wife returned, we peeled the whole pouch off and shifted its direction to include the tube as well, then dried off the mouth of the pouch thoroughly before placing another lid on. It seems, however, that once we peeled the pouch off to correct the direction of the pouch, the wafer (the adhesive portion surrounding the pouch) got weakened, so we occassionally smelled the stench of the draining liquid, and the liquid seeped through the wafer portion a few times (luckily, it was not so bad, so pushing down on the wafer did help seal the area again).

For some reason, I decided to stay away from taking any pain medication that day (of the pouch fiasco) after 10AM . I woke up the next day feeling anxiety and restless. At first I was not sure what was going on. Then I realized I haven’t taken any pain medication in over 24 hours, so I might be going through withdrawal. After my wife called my former PCP (Primary Care Physician), he advised that since it’s the weekend, it is not the best time to be dealing with withdrawals. So I started taking my pain medication again. I called my current PCP and let her know of my intentions. What I would like to do is to quit all my pain medication once to see where my pain level is currently at and start taking the pain medication accordingly. I found out that some of the pain is actually caused by the pain medication itself (basically the pain medication causes the body to experience more pain so that our body will become dependent on the pain medication). For some reason, I stopped taking Tramadol for over 24 hours and experienced withdrawal symptoms again just this past weekend. I could not handle it, so I had to take Tramadol again. After a miserable weekend, my mood was finally restored. My PCP called me today to let me know how I shoulg go about weaning off the pain killers. We shall see in a few weeks whether I am clean again or not.

For over a week now, I have been doing a lot of research on both my desmoid tumor and FAP (Familial Adenomatous Polyposis). I have been looking at both Western medicine as well as alternative medicine. In regards to Western medicine, I have found several other medications that I can try. So currently, I am taking Tamoxifen (hormonal therapy medicine) and Celebrex (a COX-2 inhibitor, another type of NSAID). I was taking Tamoxifen with Sulindac last year, but because I was told that it does not go well together with Gleevec, I had to stop it. Otherwise, it did not give me any severe side effects, nor did the side effects linger on for weeks. There are other medical therapies I could try, but because they are chemo pills, I was not ready for the side effects (which I am sure in my case will be quite severe and undesirable). Maybe if the current medication shows no results (fingers crossed it will show very promising results), I will try some of the chemo pills. There is also something called intralesional therapy, where they put either acetic acid directly into the tumor or apply radiofrequency ablation into it.  Unfortunately, this therapy is not available here in Hawaii. I was also looking into doing clinical trials, but according to my oncologist, we must go to the place they are having the clinical trials. There was nothing regarding desmoid tumors that would have benefitted me, as most of them were no longer on-going, couple were for Gleevec, and one at UPenn was for people 21 years and younger. However, there was one regarding FAP that involved Curcumin (substance found in turmeric) that was on-going at Johns Hopkins. Too bad I have to be there. I have found out the brand of Curcumin they are using for this trial, so I will probably try it on my own. Curcumin is supposed to help rid of polyps in the colon. I have also joined a Yahoo group for Gardner’s Syndrome/FAP. It is good to know there are any more out there with similar problems.

Now in regards to alternative medicine, my wife showed me a video of a medicineless hospital in which bladder cancer dissolves right before our eyes. You can check it out here if you are interested. I was interested in going to this hospital in China, but after conducting further research on this hospital, I found out that it had been shut down by the Chinese government back in 2001. There is a Chi Center in Petaluma, California that is being run by some of those people who were involved in the medicineless hospital. Another possible place for me to go for healing is to Brazil to a place called Abadiania to a powerful healer known as John of God.

As for the situation with the pouches, the wound care nurse just finally got a shipment for their use, so she is sparing me a couple pouches and four lids. She is also trying to get my insurance company to pre-authorize these pouches so that I don’t have to pay out of my pocket, otherwise I would be spending at least a $1000 before getting reimbursed. All of these pouches and bags and stuff for ostomy and wound care are insanely expensive. These pouches with the lid run about $200 for a mere 3 of them! Even those pouches I was using to collect the draining necrosed tumor cost about $150 for 10 pouches! If it wasn’t for my insurance, there is no way I would ever be able to afford them. And since the medical supply store I normally get stuff from does not carry the particular pouch I currently need, my only hope is to have my insurance pre-authorize the purchase. I actually got a catalog from the medical supply company last week so that I can browse through. I was quite happy when I thought I found a few pouches that might fit the (protruding) tumor. Only problem I saw was the height, which these pouches seemed to lack. When I talked to my wound care nurse, sure enough, she said she actually has a sample of one of the the pouches, and knowing the measurements of my tumor, they will not fit because they are not high enough. That was a little disappointing, since otherwise it would have killed two birds with one stone: insurance covering purchase of products and a pouch that does not have a lid (i.e., no need to worry about the lid failing. Only thing I need to watch out for is the wafer)… The wound care nurse told me that in third-world countries especially, they make their own ostomy bags, and that’s what we are going to attempt next. She has not given me the details yet, but probably sometime in the next two weeks, we will be working on making a bag to fit my tumor.

For me, I know that the tumor will not take my life, as I know it would rather torture me than kill me. The problem is the polyps. According to my surgeon, because of complications from my desmoid tumor, my colon which has been pushed to the back of the body cannot be accessed for any kind of surgery, including a colectomy (maybe it can be done at one of those major hospitals on the mainland like the Cleveland Clinic). So whether I do get a colectomy or not, I will have to first deal with this tumor and shrink it very rapidly. I hope that the medication will help out. I am also crossing my fingers that the curcumin (and Celebrex) will help get rid of the polyps. Also I am realy hoping to be able to go to one of these amazing healers and be completely illness free (optimal way to go!). In my case, this basically means my APC (Adenomatous Polyposis Coli) gene that is the cause of all this has to be unmutated back to its normal state. I know it can be done!

I woke up this morning and the sharp pain was there, loud and clear. I thought this was quite odd, since it has been a while since I experienced such a bad case of the sharp pain in the morning, especially after I got quite a bit of sleep. I thought the antibiotics was supposed to be getting rid of the bacterium residing around the tube. After attempting at viewing the “infected” area again, I realized I can actually see the area fairly well from the top. After seeing what the area currently looks like, though still vaguely, I came up with anoter assumption of what maybe going on down there. I have a feeling that the area is not infected after all (the doctor did mention that, although bacterium has been found from the culture, it may not be an infection at all).

When I used to cover just the tube with a smaller pouch, the meat around the tube used to grow into a mound as it was being pushed up by the hole surrounding the tube. Eventually, it got inflamed (I believe because it was being irritated by the surrouding hole as it grew out. I used to have sharp pains similar to what I have been experiencing for the past week and a half, but not as severe and often. I used silver nitrate sticks to burn the skin to keep down the inflammation. I figured, though, since there was no longer a hole surrounding the tube, the area should not get inflamed (which is why I never initially considered it a possibility. Only after being told there was no infection, I started considering the possibility of an inflammation as a cause to the pain. When I looked at the area with the tube though, I remembered that the wound care nurse covered the open area between the tube and the tumor (right) with extra adhesives every time. So, what I noticed was something that resembled a hole” with the adhesive surrounding the tube, and on the other side of the red protrubance (the little piece that made me convinced I had an infection) and the tube, there was some more meat forming a mound around the tube. If the sharp pain is caused because the area around the tube is inflamed, then burning the meat away with silver nitrate sticks should do the trick. The problem is that I need to open the lid in order to do so, which I would rather not until changing the whole pouch, so if it was inflamed, I would not be able to treat it for a while. If it is caused by am infection, then why it was hurting like that this morning, especially since I am taking the antibiotics, I have no clue. I guess I will have to wait and see (until I can use the silver nitrate to burn the meat) whether my assumption this time was right or not.

I was experiencing sharp pain around where the tube draining the dead tumor comes out since Thursday. I was also occasionally experiencing fever (though never did check how high) and chills. The pain medication would help to a certain extent, but would not get rid of the pain completely, especially some of the sharp pains (I was experiencing regular dull pains as well). It seemed that if I shut my body down (i.e., sleep), the pain would ease up. But sooner or later, it would come right back to haunt me. At its worst, the pain would be so severe I could barely walk. After a few days of experiencng this pain (or more like on Saturday), I finally decided there was something wrong, and it could be another infection around where the tube is, but I was not able to see what the area looked like, so I could not be sure. Because of the pouch covering the area, my wfe was not quite able to determine whether there was anything going on either.

We decided to go to the ER, but not right away, as I figured if I go to the ER on Monday, the wound care nurses will be there in case somethig went wrong with the pouch or the lid, as I only have one extra pouch at home. My wife took off work on Monday and we headed over to the ER. After a few hours of waiting, I was finally ushered into a room. After a few more hours, I find out that my white blood cell count is normal, and that there is no infection (internally). The infection may be superficial. The doctor in charge prescribed some antibiotics I have previously used and also the wound care nurse took a culture of the area in question to see if there was anything going on before changing the pouch. I have not yet heard anything about the results of the culture, and finally started taking the antibiotics. I am crossing my fingers that the antibiotics will help rid of this thing (assuming that this is an infection).

I was discharged since there was no reason for admitting me, but truth be told, i was sort of hoping to be admitted. By being in the hospital, though the bag situation (failing lids and all that, since when the lid fails it will fail no matter where I may be) won’t change much, at least I don’t have to worry and stress out over leaking or soiling this and that if I am in the hospital (first of all, nothing there is quite my stuff even if it gets soiled, and there are the nurses that can take care of cleanng up the aftermath). While I won’t be able to spend time with my family for a few days, I will have pain management 24/7 (better than worrying about how manty pills i can take a day and how well they will work), and I will also have my laptop and phone, so I will be connected to the outside world as well. Furthermore, I will have taken care of a bulk of the (crossing my fingers it is) infection before being discharged, so I will be home feeling much better.

So bottom line, I am still trying to stabilize my life. When that might happen no one knows. I just hope it does happen, and it happens soon.

Almost two weeks since the last post. My life is like a rollercoaster ride; ups and downs, twists and turns. Except I am blindfolded and the immediate future is unpredictable. Week one after receiving the new pouch, life was splendid (or much better than the previous two weeks at least). Despite having a gigantic pouch virtually covering my whole abdomen, I couldn’t be happier (Well OK, not quite true. I was going through ups and downs day in day out because of all that has been happening, but as I said, I was at least able to do a whole lot more than when I had no way of dealing with the draining liquid). The first week went by without any problems except for a slight leak on the very first day. That was easily solved by putting air into the tube surrounding the lid. Never leaked after that.

I went back the following week to get the pouch replaced. This time I went to the ER through something called the Fast Track. I am not all too sure what exactly a Fast Track is, but anyway, we (the wound care nurses and I) secured a room to change the pouch. I had a little accident the next day when I was on my fours picking rubbish off the floor. I first smelled some stench, then when I saw my shirt, I saw around my chest drenched, and subsequently the floor. I immediately ran to the bathroom to let whatever leaking out drip into the toilet bowl, but nothing else came out. I was quite perplexed as to how any liquid leaked out since I did not see any openings anywhere. The only explanation I was able to come up with was that pressure to the inflated tube (surrounding the lid) from when I was on my fours popped the lid open and let liquid formerly collected in the bags back up and flow out. When I got up, the lid closed up without leaving any trace of previously opening up. Hence the chest area of the shirt instead of the abdominal area was soaked. Nothing else happened after that, and I was quite pleased and felt relaxed.

Unfortunately, that especially seems to be when disaster strikes most. Just on the day before I was supposed to go back to the ER for another Fast Track, the lid failed me and started leaking. The adhesive was completely destroyed, and I was not able to stick it together again even after trying to drying the area off. I had another lid, but that one failed immediately as well. I believe this was because I had the extra lid in my bag folded up and it already had a crease, so it did not adhere properly to the pouch. With no extra pouches or lids, I really lost it and went berserk totally stressed out from not knowing how or what to do to contain the leak.

Well, somehow survived the night and made it to the ER the next day (the right side failed as well, and it was a total disaster). My wife was there with me to learn how to change the pouch. I think the wound care nurse opened and closed the lid once too many times just to show us how it works. There were a few creases in the lid which worried me. We put duct tape around the edges of the lid and overnight pads under the lid area to allow the pouch to stand after getting home. My fear came true when just a few hours later it started leaking from where the crease was. I believe the duct tape did help slow the leak. I also tried to reinforce the area by taping cotton balls to the area leaking. These kind of things tend to happen at the worst of timings. It would not have been so bad if this happened in the middle of the week, or at least on a regular weekend, but no, this leakage just had to happen on a lomg weekend, on Memorial Day weekend. Luckily, this time, we had another set of pouch + lid. But I did not change the pouch/lid right away only to see it fail again and still be in trouble. Since the leak was not as severe as the previous one, I decided to wait until Monday to change the pouch and lid. I somehoe did manage to survive once again until Monday. I even got a haircut from my wife before rushing to the shower to wash and clean off everything. We successfully put on the pouch along with the lid and I did feel much better. Of course, after all that I went through the past few days, I was still not completely worry-free, stress-free, or paranoia-free. It took me a few days after I got the first bag before I felt comfortable and relaxed, and it was going to take a few days again this time.

So was everything a-OK after this? Unfortunately, I must report: not quite… Just the day after putting the new pouch on, that protrubance that I briefly had when I got my first bag decided to start draining. At first I was not sure what was leaking. I thought the wafer (the adhesive part of the pouch) was breached. Then I realized after a sheet covering the couch, a shirt, and two pants got soiled (the second pants I just changed too!), it was the protrubance (or what used to be the protrubance) that was draining. This confirmed that the thing was indeed the tumor growing outward; something I was not looking forward to. I immediately grabbed the pouch with which I used to cover the tube draining the necrosed tumor to catch the draining liquid. It did its job, and the liquid drained into the pouch. The one thing I was afraid might happen was that the liquid might destroy and go through the adhesive and leak out again. It has not done so yet, and I am very thankful for that. Also, the lid is still very much in tact, and I am very greatful for that too. I got another set of pouch+lid from the wound care nurse the other day, since the item is back-ordered at the medical supply store I usually get my pouches from. I also got a pediatric version of this pouch, which is a smaller version of the pouch to see if I could cover just the right side tumor and catch the draining iquid coming from the opening, then go back to using the other pouch for the tube. It might be a bit too small, but I will keep my fingers crossed until I find out.

Now the above was just concerning the pouch, lid, and all that is draining from my body. I restarted my Gleevec last week Monday. I dropped the dosage to 400mg this time. I am not sure if it is because of the side effects of the medication, but I have recently been experiencing insomnia. I cannot sleep all night, so for the whole day I am completely exhausted even if I still cannot sleep. Only in the evening am I finally sleepy, to the point where I cannot keep my eyes open. This has already happened several times over the past week.

As for the medication Gleevec, I told my oncologist when I saw him yesterday, that I do not think I am going to continue on with the medication as I do not see any positive results since I started taking it last September. In fact, I have seen undesirable results in the form of the tumor growing outwards since I started taking this medication. Of course I cannot conclude by saying this was caused by the medication either and it was simply a coincidence… At this point, alternative medicine is the only possibility I have left to cure my body. And hopefully the insomnia will go away in a few days too.

I was give a new life last week.  It has already been over a week and my problem regarding the draining liquid finally seems to have been resolved. As I have written, for almost two whole weeks, I was confined to lying down on the couch facing the ceiling in order to avoid the liquid leaking out of my right side opening. I was using a couple layers of gauze rolled up, my wife’s overnight maxipad, also rolled up, my daughter’s diaper, the bottom portion rolled up to help deal with the draining liquid. However, even with all this reinforcement, it only seemed to be good for maybe three hours before liquid started trickling down my skin again. I shove my finger through the diaper and sure enough the pad was saturated. Luckily, the pad somehow seemed to do a pretty good job of containing the leak even (or I should say especially) after it got saturated. It somehow contained the liquid pretty good to the point where I was able to walk around for a while (think 5~10 min) before it started leaking. When this happened, I would wipe off all that was leaking until nothing else came out, lift up the tape and wipe off all that was under and on the tape and reseal the area again. This would buy me another few minutes before I would have to go through all the trouble again. But of course I still could not squat or bend down.

I made an appointment to visit my surgeon last week Thursday, mainly so that the ostomy/ woundcare nurses could work their magic. My wife took the day off so that she can take me to the clinic/office. It made life so much easier, not only because it was so much faster getting there and less walking, but also because I was able to sit reclined which is the other position that prevents liquid from draining unlike where I am required to sit up when riding the bus. As I did the previous time I visited the clinic, I pressed a towel against the opening area to prevent liquid from flowing down my body.Two of the woundcare nurses were already there waiting when I walked into the door. We did not wait long before being ushered into a room. There a third woundcare nurse joined us and started working their magic. They bring out a gigantic bag that literally covered my whole abdomen. It has a “lid” that can be peeled on and off as needed. There were two pouches that came out of the left side that would collect liquid from both the tube draining the dead tumor and the liquid draining from the right opening. There was another nozzle to blow/pump air into the bag. After fiddling with the bag and making sure they could get it on the right way, they sprayed the surrounding skin with non-stick barrier free spray so that the adhesive sticks better, then put the bag on. By this point, especially from the past two weeks worth of stress and fatigue and everything else, I was just completely exhausted. I asked my wife to take me sraight home where I lied on the couch to rest. Up until this point nothing came leaking out of the bag. I thought to myself, “finally some relief”. However after about two hours of lying on my right side, I all of a sudden woke up and found my shirt soiled again. I checked under my shirt and noticed the cover portion of the bag slightly peeled off and wet from the liquid. I wiped off the liquid and was able to salvage the cover, but I was slightly depressed by the fact that I cannot lie on my right side . I paged the woundcare nurse but did not get a call from them until the next day. Their suggestion was to blow air into the third tube to pump up the bag a little. For this I was not able to do it on my own, so I had to wait for my wife to come home. That night I lied on my right side, but with a towel underneath for in case. I was amazed and relieved to find nothing leaked out nor opened up the next day.

For the next week, though I was still slightly paranoid, my stress level and paranoia level went down dramatically as everything was alright with nothing leaking. I was supposed to go back with my wife the following Wednesday to change the bag and for my wife to learn how to help me change the bag, but because she had a prior engagement that day, I had to schedule my appointment for Thursday. The woundcare nurse got a room at the ER and I went through something called a Fast Track, where I simply go to the ER and get ushered through to the reserved room. There, as I did before, I got my bag changed. This time they pumped up the bag for me, then gave me the pump so that I can do it myself whenever. However, as I learned the hard way, it seems that pumping the bag to the maximum is not quite a good thing. One day after getting the bag replaced, I was on my hands and knees picking up some rubbish on the floor when I started smelling a little stench which smelled like the liquid coming out of my body. I look down, and indeed my shirt was wet, and the floor wet as well from the liquid. I run to the bathroom immediately, but do not find anything dripping, nor anywhere else open or wet. The only explanation I have is that the bag opened up on the top due to the pressure applied by my abdomen, some liquid flowed back out of the pouch then onto my shirt and floor, but as soon as i stood up closed up again without the adhesive portion getting wet at all, thus not leaving any trace of opening up. Soon after, I opened up the nozzle to release air, then pumped some air into it. No accidents have happened since then, and am very relieved for that. However, I am having quite some trouble managing my pain right now. It is sligtly puzzling as it has been almost two weeks since I stopped taking Gleevec, therefore the side effects must have completely tapered off by now. Always something…

It has been almost three weeks since I last posted anything. Nothing has really been looking good around here, actually. I have yet to find a gastroenterologist. The last one, Scott Kuwada, apparently even after I terminated our relationship went ahead and sent me a letter notifying the termination of our doctor-patient relationship. Either the communication between the office and the doctor is not so great so he did not know about me already terminating our relationship, or he cannot handle rejection well. His explanation was because I cancelled the procedures THRICE among other reasons. Now the third time, I did not show up simply because I already had terminated him as my doctor. The first two times as you know, I was physically unable to  make it. I still think it would have been nice if this man could have at least asked why I had to cancel, especially given my physical condition. Shows how much this doctor trully cares about his patients. Anyway, my search continues.

The side effects have not slowed down a bit all this time, and is still plaguing me day in day out. This of course with the patch. In fact, I recently decided to up the dosage of the patch from 25 microg to 50. The patch is about 4 to 5 times the size of the 25. I only wonder how big the other patches are!? Day three and although slightly better (and I’d like to stress the “slightly” part) I can still feel the pain. I have a feeling somehow no patch is going to rid the pain without the use of breakthroughs. So I have decided to stop taking Gleevec again, and when the side effects are gone (I’d say about in two weeks) then drop the dosage from 600 to 400mg and start again. If that doesn’t stop the side effects, then I don’t know what to do.

Now, what I experienced this past week was probably by far the worst experience I had at home in recent times. It was truly a nightmarish week. It all started a couple Friday night/early Saturday mornings ago, when I first noticed a little leak on the bottom of my right side. I cleaned it up, slapped some extra tape on top and went to sleep without giving it much thought. When I woke up in the morning, I have found that some liquid leaked out and soiled the bed sheet. I still never gave it much thought and cleaned the mess up with some hydrogen peroxide. When I went to the bathroom, I realized that the dressing/diaper (I use to cover the upper right side) was sagging, so decided to change it. That is when I finally realized the extent of the leak. The open wound that was draining liquid since last September and had finally dried up in February started to drain again. The pouch I used before to collect the liquid would not fit over the opening this time due to the shape of the surrounding skin. What used to be fairly flat, now there is a huge hill after the tumor grew out on top of the original tumor, and the opening is at the very bottom of this hill. I understand there still are bags that can fit over the opening, but to complicate matters, the sensitivity of the skin surrounding the opening makes it impossible to have a bag over the opening.

Anyway, I call my surgeon and discuss options. I suggest to him to stitch up the opening, since I thought the opening was somehow connected to my left side (it seemed to me that since the opening started to drain again the left side started to drain less), and if I blocked the opening, the liquid would back up into the pouch on the left side. He told me he would be in on Tuesday, so to make an appointment for then. I somehow survived the next few days without making too much of a mess. After getting the opening stitched up, I thought all was finally under control. I found out the hard way the stitch did not help that evening when I was getting ready to take a shower. When I took off the dressing from the right side, a part of the tumor (since the skin is very sensitive, it easily bleeds when I peel oof the dressing) started bleeding and dripped onto the floor. After containing the bleeding, I squatted down to wipe away the blood. That’s when I saw the liquid from the opening dripping onto the floor (as if a faucet not properly shut). I somehow managed to clean up the floor and jumped in the shower. It seemed that the amount that drained differed depending on how I am positioned, so if I stood upright, it did not drip as often. However, even standing upright still will cause liquid to drain every now and then, and the only absolute way to prevent any drainage is either to sit inclined or lie down flat on my back facing the ceiling (however, though I am still unsure how it works, it seems that whenever I am in those positions that are safe from drainage, liquid collects and builds up—like a dam—and flows out when I stand up, causing yet another major clean up).

I called the surgeon the next day to ask a few things about the stitch and the opening and found out that the stitch will eventually dissolve but the opening will never close up as long as there is something that has to drain. So after finding that out and seeing that the stitch is not helping much, I called the ostomy/wound care nurse that has helped me several times before (and also came to the clinic on Tuesday to answer questions regarding pouches I can possibly use) to see what else can possibly be done. She told me there is a pouch that will fit over everything including the tumor and the pouch on the left side, so make an appointment for (this) Thursday since that is the next time my surgeon will be in. This currently is my only hope for a normal stress-free life right now. I called the nurse last Thursday and today is still Monday. I still have to wait a few more days. My days currently are spent lying on the couch all day facing the ceiling. By evening, my back starts to hurt, but I cannot lie on my side either since liquid can still trickle down my sides. So when I sleep at night, I need to use a couple hand towels to make sure I catch everything. Every time I stand up, I am afraid liquid will start trickling down my skin (and usually does requiring me to wipe it several times until I can get it dry just for a while). I cannot squat or bend down (unless I ABSOLUTELY have to) so I am limited with a lot I can do and access, and in case something falls, I need to use my feet to pick it up and place it somewhere higher like on a couch. The toll all this is taking on me both mentally (stress and paranoia) and physically (especially exhaustion from the stress and paranoia) are undescribable!