In Mid-May of 2002, I found a lump under my right collarbone. I saw a doctor who initially thought it might simply be a swollen lymph node from an infection. Fortunately, she sent me for a chest X-Ray to be safe.
The X-ray revealed several swollen nodes. I was then sent to an Ear-Nose-Throat specialist for further diagnosis. He performed a "needle-biopsy" where he sucked some fluid from the swollen node. A week later, it came back suspicious but inconclusive. A full Biopsy was scheduled.
We waited about 2 weeks for the Biopsy to be performed, then another week for the results: Hodgkin's Disease (Specifically, Nodular Sclerosis). Say Bye-Bye to ENT, meet Dr. Oncologist.
Dr. Oncologist wanted to know the stage of the disease (how widespread it had become), so off we go for more tests. Thus far, I've had 3 or 4 CT scans, a Gallium Scan, Bone Marrow Biopsy (not particularly painful, but DISGUSTING knowing what he's doing in there), a pulmonary function test, and a heart scan. Fortunately, all of this testing put me in stage 1B: not spread much, but not totally localized.
I was finally prescribed to receive 6 to 8 months of Chemo with radiation to follow. The specific chemo regimen I would be receiving is called "ABVD". It's a combination of 4 drugs. Any of the 4 drugs works well enough on it's own, but the 4 combined seem to kick cancer-ass best.
Below, I hope to keep a running diary of my experiences with this fun. If it doesn't seem current, I probably didn't feel well enough to get to it. Keep checking in, it'll eventually get updated.
30 July '02 - My first chemo. It wasn't bad at all. The worst part was opening the (supposedly) waterproof dressing the surgeon wanted me to keep on the Port incision for a week. It STUNK. The blood from the incision was literally rotting inside the bandage. Even the nurse had a hard time with the smell. She cleaned it up some, but there was some tape on some stitches that she was afraid to remove.
They gave me a bag of Lorazapam before the actual medicine. That made me VERY tired, so I think I missed the first couple of meds. The guy across the aisle from me was kind of senile. He kept discussing the telephone prefixes in the area. I could barely hear him, so I just nodded and pretended to fall asleep. Only real side effect I had was major heartburn; don't know if it was the chemo, or the stress of finally being there.
2 Aug '02- It's the second day after my first chemo and I really started to finally feel it this morning. I slept from 11:00 PM last night to 11:00 AM this morning (interrupted briefly by a trip to close the windows for a thunderstorm). I'm smoking again. Only took a day and a half off from it. Was pretty queasy when I woke up, but took a Kytril and it went away about 2 hours later. I just feel drained. Will put the Nicotine patch back on after I shower. I get the stitches from my port out today!! The place where I had the Marrow Biopsy started hurting last night. It's been two weeks, I wonder if something's up? To top it all off, the weather has been, and will continue to be, HOT and MUGGY. If the chemo doesn't kill me, the weather will.
3 Aug '02 - Went to get the stitches out on the Port Catheter last night. The doctor declared the incision INFECTED! 10 guesses why it smelled so bad when the Oncology people opened it. The cut is oozing pus now. It's sore as hell. Now I can add an antibiotic to my list of daily medications. As the old saying goes "if it weren't for bad luck, I'd have no luck at all".
As it's about an hour before time for the Kytril, I'm feeling a little queasy again. More than the queasiness though, my guts have been messed up the past few days: always feeling full and boiling. Nothing productive, just boiling (can we say "stool softener"?)
I think I can understand why people on Cancer get depressed. First, there's the life-threatening illness aspect. While everyone knows they're going to die, few people have the clock shoved in their face. Then, there's the treatment. It totally turns your life upside-down. You go from your daily routine, your interests and concerns, to one where you MUST become a hypochondriac. You're told to take your temperature frequently, use a stool softener (unless diarrhea sets in, then a stool hardener), avoid foods you like, eat foods you don't like, take dozens of pills a day, etc.
The worst part though, is that you never have the energy to enjoy your life. You can't attend parties or gatherings, you can't even play with your kids/grandkids (risk of infection). This sucks! I'm only on my third day of it. I wonder how I'm going to last for up to 8 months.
FYI, ABVD stands for: Adriamycin (Doxorubicin)
The Kytril is a new and amazing anti-puke medicine. It's supposed to suppress the puke center of your brain.
Lorazapam is a faster-acting puke medicine, but it only lasts for a short time. Luckily, it's also an anti-anxiety medicine which makes us patients more docile and compliant.
4 Aug '02 - Yesterday was the worst day yet. I assume it was the infection. I could only stay awake for two or three hours at a time. When I was up, I felt listless and tired. All I did was sit in front of the TV. I was up for a total of about 6 hours. Then, couldn't sleep at night. Tossed and turned for the 6 hours I tried to sleep. Not hungry either. My wife forced me to eat. Otherwise, I would probably have gone the day without.
5 Aug '02 - The infection from the port installation is worse. I'm not sure if I should see my family physician or the Oncologist. While it may be a minor enough issue for the local MD to deal with, with my reduced immune system (thanks to the chemo), the Oncologists folks may be better able to handle it. Still spending a lot of time in bed or just moping around the house. I don't seem to have any energy.
6 Aug '02 - The infection is finally starting to die down. Most of the redness is gone, but it's still oozing green stuff. Keeping moist heat on it has helped immensely. I've come to think that my "theory" on sickness is correct. Getting active helps. I got off my dead a$$ yesterday and did some antenna work for a couple of hours. Not only did I feel alot better, but my mood improved some. It appears that after the energy drain from the chemo, some inertia set in; "a body at rest tends to stay at rest, a body in motion tends to stay in motion". I'd been resting too much, and it was keeping me down. From now on, I'll try to get some exertion each day.
7 Aug '02 - Infection still there. A call to the doctor revealed no new information: clean the area with peroxide, keep taking the antibiotic. Woke up this morning with pus dripping off my shoulder. Appointment to actually SEE the doctor has been moved to Thursday morning. Why won't the wound close?!?
Lately I'm feeling "Guilty" about this whole cancer thing. So many people have sent their support. I was given copious amounts of time off from work. I've received so many offers of assistance. BUT, I neither look nor feel sick. The original disease has had no symptoms past the lump under my collar bone. The treatment thus far has only been an inconvenience. My hair hasn't fallen out. I haven't puked. I don't look pale or emaciated. I'm only tired for 4 or 5 days. If it weren't for this infection thing, I'd probably feel better than before the diagnosis. It sort of makes me hope that the treatment gets progressively worse. Then, I can say "See?!? I really am sick".
8 Aug '02 - I went to see my family doctor yesterday about the infection issue. While he didn't seem particularly pleased with how the wound was healing, he declared it "alright". Guess I was worried about nothing. Got the stitches out today. The surgeon also said that while it's not typical for an incision not to heal in two weeks, it's not unusual either. It feels a lot better without the thread in there. Next Chemo is Monday. Let's all cross our fingers!!
10 Aug '02 - Incision is still bleeding, but much less than before. Perhaps it will be healed in time for Christmas!!! In the meantime, just getting ready for the next chemo session monday. I need all the strength I can get before I get there, 'cause after the infusion, I'll be wiped out again for a week. I'm hoping that the healthier I am BEFORE infusion, the sooner I'll be myself AFTER.
One of the "hypochondriac" things I discussed earlier showed itself last night. I was bitten by a mosquito. Normally you would just swat the little bugger and move on, but in my current state of reduced immune system and reduce blood clotting ability, I was pretty worried. I am more susceptible to the diseases that mosquitoes carry. Fortunately, it's late in the season and they'll be gone soon enough. BUT, who would have thought that I'd be worried about a stinkin' mosquito bite!
12 Aug '02 - Just got back from my second infusion. I'm still a little groggy, so excuse any spelling errors. All went well; I'm an old pro at this now!! There's a new twist to my treatment though. I have to start injecting myself with Neupogen every day. I've never given anyone a shot, much less given myself one!! Neupogen is a hormone that will make my body produce white blood cells faster than normal. Since I'm producing much less due to the chemo, it's expected that this will put me back to normal amounts. Just another new experience.
The Port wound still isn't totally closed. BUT, last night was the first night that it didn't leak any pus. I guess that's a sign that either the infection's totally gone, or it's starting to heal, or both. Either way, I'll be glad to see this problem go away.
I've been "hiding" recently since the last infusion. If any of you have tried to communicate and received no response, it's OK. It isn't because the treatment is so horrendous, nor because I hate you. It's simply that I was feeling down. Today I realize that I really should call everyone, so expect a call soon.
13 Aug '02 - Always tired. The chemo makes me VERY tired. The temperature's been in the 90s again, so I can't seem to get decent sleep. All in all, this one is going a little easier than the last. I had some queasiness last night, but very light. I hope some Bran Flakes will help solve the "other" problem I encountered. Port wound is still bleeding.
14 Aug '02 - The tiredness has finally caught up to me. I slept 10 hours last night, and woke up more tired than when I went to bed. I assume this will be the day that I'll be asleep 2 hours for every 1 that I'm up. I just have no energy. Although I'm on the most potent medicine available for nausea, my gut still feels "weird". Not really queasy, but definitely not right.
The only thing that's been holding the "hole" in my port incision closed for the past week has been a piece of surgical tape. The tape has fallen off. Now, the incision hurts. I really wish I'd gone to a different surgeon! This thing has been continual trouble since they decided to put it in. I've been told by a friend that had cancer, that what I'm experiencing with this port is out of the ordinary. She had hers put in in under 10 minutes, it totally healed in a week, and she was rarely aware that it was even there! So, if you are scheduled to receive one, don't get discouraged by my experience, just make sure to choose a competent doctor!!
15 Aug '02 - I don't know how much more of this I can take. I've been queasy since I went to bed last night. That got me up every single hour last night. I'd start to feel sick, get up, step outside (to cool off and get some air), feel better, lay down, and be up again an hour later.
The Port incision has started bleeding A LOT!! I woke up with the bandage saturated with dried blood. The surgeon finally got back to me yesterday about it. I'll be seeing him AGAIN this morning. I've been told that doctors don't like to stitch wounds that are over 48 hours old, but I can look into this hole and clearly see the tissue under the skin. It can't stay like this. The skin is pulled back so far from the hole, that it will never meet and heal by itself. It's an infection waiting to happen.
I think I may also be experiencing some of the nerve damage that I was warned about. Occasionally, my left foot feels like I'm standing on a floor next to a large vibrating piece of machinery. That "humming" lasts about 20 seconds or so, then suddenly stops. It's quite unnerving.
Being house-bound like this also isn't helping my emotional state any. I've been feeling more and more depressed lately.
Gee, only 7 more months to go!
16 Aug '02 - I'm definitely gaining more insight as to why the cancer patient is prone to depression. I can't seem to sleep more than 4 hours at a time. During those 4 hours, I'm never in a deep sleep. While awake, I walk around like a zombie; I'm very groggy and disconnected.
Then, there's the nausea. Let me be the first one to state: there is no enjoyment of any kind when you feel like you could hurl at any moment. All you're capable of doing is sitting and panting. I look like I'm in labor!
And finally, fever. Temps outside have been running in the low to mid 90s all week. Temps inside (inside me, that is!) have been over 99.5 for the same period. Even when it "cools" down to the 80s at night, I still feel like I'm in a sauna. This just adds to the listlessness and malaise.
Went to the doctor again yesterday about the incision. His words: "It's too late to do anything about closing the wound now. It has to heal from the inside. Just keep it covered and it should close within two weeks or so". I bet most people wish their job was like a doctor's: Perform a surgery, CAUSE a problem, bring customer in 5 times to try to solve problem that doctor caused in first place. If I was dealing with an auto mechanic, we'd both be in court by now!
Many "events" this weekend. If I don't start feeling better, I'll probably miss all of them.
17 Aug '02 - Finally starting to feel like my old demented self again. My sleep is still all screwed up and my guts are still boiling, but at least I'm capable of carrying a conversation, and don't feel like I have the flu from hell.
Wife got her first good look at the hole in my chest. She almost puked. I needed help cleaning it, and asked her. She tried three times just to look at it. All 3 times she had to look away and started gagging. I guess this thing looks worse than I thought. Currently, it's about half the diameter of a dime, but about 3/8" deep. Inside, it's still wet and bleeding (looks like liver).
Hopefully, this will be my routine from now on: Infuse on Monday, feel like hell until Saturday, try working until the next infusion. I think I could learn to live with that. It may a bit annoying trying to inject myself with medicine while at work, but I really have to keep proficient.
19 Aug '02 - Spoke with my boss. The company doesn't want me back until the treatments are totally over. There's a liability issue involved, and they would rather play it safe. Guess I'll have to find MORE to keep busy!
I have an appointment today to have blood checked. While I'm there, I hope to get some assistance with my screwed-up sleep and boiling guts. The boiling guts issue has elevated to the point of causing some bleeding.
This week is chock full of various appointments. I have the blood work today, Pulmonary Function Test Wednesday, and Incision check on Friday. I'll be keeping someone at the insurance company pretty busy!
Otherwise, feeling pretty good. Temps made it down to 60 last night; sleep should improve. Just waiting for the hole to close.
20 Aug '02 - Yesterday's appointment turned out to be much more informative than just the "blood work" I thought I was getting. I actually obtained a "Q&A" with my Oncologist's Nurse Practitioner. She's trying to help some of the other issues I've encountered.
She did confirm that the symptoms I'm not currently seeing will come further down the road. In fact, she seemed surprised that I still had hair! Sounds like that'll be going fairly soon. The fact that I haven't puked yet was another surprise. I should look forward to that soon too.
She prescribed me some Ambien to help me regulate my sleep. I hope this will help me to get more rest before each infusion. If nothing else, it should help me straighten my sleep times out a little better.
She also said that the "natural" methods (Bran Flakes, metamucil) I was trying to regulate my "bodily functions" wouldn't work. She gave me a gentle chemical-based "cleaner". Hopefully, this will prevent the boiling guts I've been experiencing.
The neupogen injections worked so well that I didn't need to take the last one. It's gratifying to know that I'm responding well to that treatment. Hopefully, that will keep any infections from starting or getting worse.
According to the NP, my healing powers are greatly reduced by the Chemo. It looks like I'll have this hole in me for a month or more. She was also of the opinion that it's still infected. Boy, am I sick of this little "issue".
The depression I've felt seems to wax and wane of it's own volition. When I'm coming out of the effects of infusion, I go from VERY depressed to normal in a matter of just a few hours. But, the depression comes back; very suddenly, very severely, and for short periods. It hit me last night for about 4 hours. Unfortunately, it arose soon before my wife and I were involved in a sensitive discussion, which made the depression worse, and my wife angrier.
Also, my body's temperature regulation circuits seem a little whacked. While sitting in an air-conditioned restaurant last night, I got uncomfortably hot and started sweating like crazy. This went on about an hour until we left and I CRANKED the air conditioning in the car. That might explain why the hot weather was bothering me worse than usual.
24 Aug '02 - Been a while. Nothing heavy going on recently. Saw the surgeon again yesterday about this hole in my chest. Now, he's talking about whether we can "save" the port or not. Thus, I called my trusted family physician and he referred me to a real surgeon. I'll be seeing him in 2 weeks.
The hole has taken a minor turn for the worse. At the bottom of the hole is another hole that leads to the actual port. When I apply pressure on the port, I see fluid come from the "other" hole. It looks like the entire area of the surgery isn't healing. It's as if I have a series of tunnels running through my chest.
I haven't named names yet, but if anything truly serious comes of this, I'll be suing!
26 Aug '02 - I infuse again this afternoon. The Ambien has worked wonders for helping me sleep, and I've been eating sensibly. I should be walking in the door in good shape. I'm not looking forward to losing yet another week, but the weather's much nicer, so maybe it'll be easier this time.
I have an appointment this wednesday with a REAL surgeon. At this point, I'm hoping that the quack is wrong about having to replace the port. I'd be happier just waiting the months it may take to heal. I don't want to have to go through this all over again.
If I'm up to it, I'll write more AFTER the infusion.
27 Aug '02 - Never made it back yesterday. Today, I don't feel bad at all. Some slight "uneasiness" in my gut, and my eyes feel very dry. Otherwise, business as usual.
Latest news on the port: The inner hole (tunnel) has opened to the point that there isn't a bottom on the main hole any more. I can see the all the way through the hole straight to the actual port. To illustrate, I look into this 1/4" hole in my chest, through the 3/8" of skin tissue, and see the translucent white plastic of the port. Whenever I flush it out with peroxide to clean it, I have to literally squeeze all around the port to drain the peroxide out. It's seeping into the cavity where the port is located. Looks like I may have to have it removed and replaced on the other side after all. (Don't even get me started about the yellow "mucous-like" discharge I've been seeing from it lately). Will have more news tomorrow.
28 Aug '02 - Third day after chemo and it has hit! Guts are bothering me greatly: some queasiness, cramps, bloating, MASSIVE heartburn. My sleep schedule is shot to hell too. I was dead-tired when I went to bed last night, but awoke after about 5 hours. I'm still VERY tired, but can't sleep. Even the sleep medication doesn't help.
My shoulder is quite sore where the port is, I believe the infection's getting worse. Luckily, I'll be seeing the doctor in just a few hours!
***(Later that Day!!)- Just got back from the REAL surgeon's office. He so strongly wanted the port removed that he reshuffled his calendar some and took it out on the spot. It's about 2 hours after my scheduled appointment, and the THE PORT IS OUT!!! I'll be getting in touch with them to have another installed on the other side before my next infusion. I get the feeling that this procedure will hurt more than the installation did, but it's worth it just to have this problem gone. I'm off to bed now. Don't feel well at all.
30 Aug '02 - Oh the humanity!! I feel like absolute hell and have for the past two days. The Oncologist folks said that the symptoms would worsen as the treatment progressed---they sure weren't kidding. My favorite Hodgkin's web page describes Chemo as " a bad hangover which doesn't go away after you puke"; an apt description.
The lack of "bodily movement" out one end is threatening to force it out another. (a hint: try chemo if you have diarrhea, NOTHING moves after this). The sleep schedule is so whacked that I wish I was in a windowless house so I wouldn't care when I'm up and when I'm down. Hell, to describe this as a bad hangover is a bit of a misnomer as well. You can't sleep this off, it keeps you awake while you suffer.
In fairness, I'm on the downside of the chemo hangover. I was actually able to sleep for 5 continuous hours last night, and haven't yawned in more than an hour. I might have been able to sleep even more than that, but due to the open incision from the port removal, I can't vary my position in bed. My back starts to hurt after a few hours in bed.
31 Aug '02 - It has passed. I actually felt good enough last night to drown a couple of worms at a local state park. I then went to bed at 2100 and slept straight through to 0700 this morning. My headache's gone, temp's normal, and I don't feel too bad. That seems to be the way it's gone before: it leaves in a matter of a few hours. This was however, the worst bout I've had yet.
It's amazing how my mind can trick me. All this week, I'd been thinking that the effects of the chemo typically wore off around day 4. I never went back to check the previous "diary" entries. Now that I have, I see that this round has gone the same as others: I don't feel normal until day 6 after chemo. It's mighty tough totally losing 6 out of every 14 days!
Since it's a holiday weekend, and the surgeon's nurse took the last two days off, I wasn't able to schedule a new port. I'll probably get less than 24 hours warning of the next surgery. I'd like it in on Wednesday so I can let it heal 5 days before I infuse next, but it's all going to be up to the doctor's schedule.
2 Sep '02 - I guess I was wrong in the last entry. This one seems to be hanging on longer than the others. The day after I wrote that, I went most of the day just fine. Around 1800, I got very nauseous and lethargic. I went to bed early, and woke up fine, but just the exertion of a family barbecue the next day was enough to wipe me out. Once again, I went to bed early totally exhausted. Is it the Chemo, or the (slight) infection in the old port incision? Inquiring minds want to know!
4 Sep '02 - Just a quickie to keep everyone informed.... I get my new port tomorrow. The old "port-hole" is healing nicely, and I just couldn't bear the thought of going a week without an open wound on me, so I've decided to have another installed. In all seriousness, let's hope this one goes better than the last!
5 Sep '02 - Ouch! The site where the previous port was installed was numb from the Biopsy surgery. Thus, it never hurt much. This however, hurts A LOT!! It's quite sore. I certainly hope I have more success with this port than the last. It's a slightly different type, so maybe that'll help some too.
10 Sep '02 - Yesterday's infusion wasn't too bad. I just had a nasty headache all day. I noticed that the hair is starting to thin in some "streaks" in the front of my head. Also, the eyebrows are starting to get noticeably thin.
The new port works fine. Since the area wasn't as numb as the other side, it hurt more to have the needle inserted, but the wound doesn't hurt at all. The old port-hole is still wide open and healing SLOOOOOOOOWLY! That'll probably still take another month to fully heal.
**A note to all of the "well-wishers" out there. Cancer and it's treatment sucks. While it's a life-threatening disease, my version of it is quite curable. So when you see me, let's not harp on the disease. Think me as simply having a nasty cold. Once we get past the "How do you feel?" stage, let's move on to other topics. Cancer isn't my life. (Although I've always been fascinated by medical issues, and can warn anyone out there about some of the stranger side effects of chemo).
11 Sep '02- Things seem a little different this time. Maybe I just have the right combination of OTC drugs, or I'm getting used to the Chemo, but I don't feel as bad as usual for the Wednesday after. I slept almost 7 hours last night, don't feel very queasy, only slightly lethargic. Let's just hope this keeps up.
13 Sep '02 - As always, the worst of it seems to be over. The past couple of days were more weird than painful. This infusion seems to have affected my mind more than my body. The symptom commonly called "chemo brain" has set in. I can't seem to focus. I can't remember names or dates very well. My thought processes aren't working too well. Heck, I'm scared to even drive! The Oncologist's office said this is normal and should go away once chemo stops.
The surgeon checked the port holes out yesterday. His installation looks beautiful! The incision is just a thin line across my chest. The first incision is still an open hole, but it's finally healing (from the inside out). The hole is not as deep as it was, and is filled with scab.
Some more side effects no one would think of: Odors-any strong odor makes me nauseous. Which leads to: Body Odor-my body's ability to fight bacteria is greatly reduced. Thus, my ability to maintain a clean odor is gone. 2 hours after a shower, I stink. This makes me queasy all day. Deodorant doesn't help, and anti-bacterial soap is useless. If you see me around and notice a "fragrance" about me, please forgive me; it'll be gone in the spring.
15 Sep '02 - The time that I feel terrible is getting longer. I've been queasy since Thursday. Haven't been able to get out of the "funk". I only take the (wonder-drug) Kytril for the first 3 days after I infuse. Then, I have to take Lorazepam. The lorazepam makes me drowsy and "stoned", so I don't like to use it. Thus, I've been pretty out of it for the past few days.
I certainly hope this queasiness wears off by Monday, my 40th birthday. It would suck to not be able to celebrate in any form.
The lack of temperature control in my body is getting annoying. I went out to my shed Friday night. The temp out there was 78 degrees. In a half-hour, my body temp hit 100 degrees. That pretty much wiped me out for the rest of the night. It seems that any time I'm in an environment that's over 65 degrees, my body quickly heats up and can't compensate. I get a nasty fever.
17 Sep '02 - For those of you that asked, it was a nice 40th birthday. I made an interesting discovery concerning my queasiness as well: beer made it go away! Drinking the first two beers was a new experience in pain. The heartburn I had was monumental. After that, the heartburn and queasiness just went away. I felt better than I had in a week. I actually ate pepperoni pizza without heartburn!
Hopefully, the side effects are gone for the the rest of the week. I don't feel bad now (not even a hangover!).
18 Sep '02 - Not sure if this is related to Hodgkin's or not, but I had a NASTY leg cramp last night. Lasted for more than 5 minutes. This morning, my calf is incredibly sore. Maybe I ruined my electrolytes with the beer I had on Monday?!? If so, it has to be related to the cancer or chemo, because this has never happened to me after 4 beers before. Otherwise, I'm back to near-normal now. I sleep at night, my temps are normal, and I can be semi-productive around the house.
24 Sep '02 - Computer's been acting up. All of my file associations are wrong and won't reset properly-----thus, the delay getting this out. There will probably be another delay as I wipe my hard drive and start fresh.
I infused today. The prime side-effects haven't set in yet. As usual, my sleep was the first thing to go. I went to bed at 7:00 PM and was back up at 1:00. I finally found out WHY though. There's one more drug they've been giving me that I never knew about. It's a steroid that's supposed to help with the nausea. It's called Dexamethosone. Nasty stuff. It makes me "speed", gives me heartburn, keeps me jittery, ruins my sleep, and makes me starved when I'm not actually hungry (which explains why I haven't lost weight during the chemo).
When I next see the doctor, I'll ask WHY I'm taking this drug. The manufacturer says it's primarily for nausea but is "particularly effective in the treatment of Hodgkin's Disease". If it's good for the treatment, it has to do more than prevent nausea. I just haven't been able to find out what yet!
25 Sep '02 - Wish my wife a happy 40th. She hit the milestone yesterday!
For those of you that haven't physically seen me in a while, I have to confess....I show none of the outward signs of chemotherapy. I pretty much have all of my hair (heck, I even went for a haircut last week), I'm not pale, and haven't lost any weight. I look just like I did a few months ago except for the scars.
I guess I was built like a horse going into this, so it's not killing me as much as it does some folks.
Dr. Oncologist suspects that his treatment is working. He felt the nodes that were most infected and thinks they're shrinking. Thus, I have another round of tests this week. I got an injection of irradiated Gallium yesterday. This stuff makes me nervous. They pull the syringe out of a metal box marked with the yellow radiation sign, shoot me with it, then put it back in the original metal box and put that into a larger metal box marked "radioactive waste". I'm instructed not to be around small children for a few days because this stuff is so toxic.
The actual Gallium scan will be on Friday. I'll also take another CT scan then.
I saw the pix of my first Gallium scan yesterday. There were three lymph nodes clearly shown on my right throat and chest. I'm glad I saw that so I have a personal benchmark to use to track the treatment's progress.
**An explanation of the Gallium Scan process: Gallium tends to settle into "Fast Growing" tissue (Cancers). Thus, they shoot you with Gallium, let it settle where it wants, then take VERY extensive pictures of your entire body. The areas that glow most are the locations of cancerous sites. I assume that in a healthy person, there would be a relatively even distribution of the stuff. In my case, the three spots on my throat/chest were quite obvious. I didn't however, see any other obvious spots, so I assume it's pretty much localized to my upper chest....a good sign.
26 Sep '02 - It's Here!!!! I've actually felt quite good the past few days. I was hoping that my body was getting used to the poison or something. No such luck. Same old side-effects, just a day or two later than usual.
27 Sep '02 - Guess I spoke too soon yesterday. This cycle seems quite light compared to others. Yesterday, about two hours after I wrote the above entry, I felt good enough to go out to our local SBE convention about an hour's drive away. I even felt good enough to do the dishes last night. This morning, I feel a bit tired and queasy, but good enough to drive myself to the medical tests I have scheduled.
It HAS to be the cooler weather!
29 Sep '02 - The tests were quite encouraging. The three nodes that were standing out on my right chest are now gone. I couldn't detect any spots in the region. I hope this means the treatment is working.
Found a painful pronounced lump in my right armpit just a few minutes ago. The size of a pea. Feels like a cyst. Probably due to the reduced immunity I currently have. Guess I'll be back to the doctors tomorrow!
1 Oct '02 - I've received alot of e-mail lately where people seem to want to understand what is getting me through this period. I've had folks suggest love and strength as what gets you by. Nope. Simply stated, it's responsibility. I have a couple of hungry mouths to feed. Not only hungry, but not up on the "technical" aspects of life. They don't understand for example: whether the new noise in the car is a bad problem or not, whether the furnace will last another year or not, WHY you can't cancel the car insurance before you drop registration on the car, how and why to caulk the tub.... Plus, with one headed off to college soon, my paycheck is essential!
Face it, were it not for others' needing me, I would probably have gone on an extended (and permanent) vacation. I view quality of life as more important than quantity. Lately, the quality of my life has nose-dived. How much quality can you have when you're always on the verge of puking? Or when you're paranoid about getting bitten by a mosquito? Or when each new blemish forces you to call the doctor? Or when you're forced to take daily injections?
Wouldn't it be nicer to sit on a warm beach drinking an ice-cold beer for year or so, then quietly exit stage-left?
P.S. The doctor said not to worry about the growth in my armpit. Probably just a slight infection from a mosquito bite. (yup, the mosquitoes were out in force a couple of days ago).
1Oct '02 (a) - Just got a call from Dr. Oncologist's office: I'm officially in REMISSION!! Looks like I read the Gallium Scan correctly. The only meaningful difference this news presents is that I'll only have to go through 6 months of chemo, not 8. It's still encouraging.
3 Oct '02 - Saw Dr. Oncologist yesterday. He wanted to have a peek at the lump in my armpit. Turns out to be a slight infection of a sebatious gland. Nothing to worry about. Won't even need an antibiotic.
While there, I got the definition of "remission": Stopped growing, but not necessarily gone. Thus, the continued chemo. I believe there's no way of knowing if every cancerous cell in my body is gone, so they'll just keep poisoning me for months to come in the hopes of killing it all.
4 Oct '02 - Some of you have mentioned the "Depression" page on my site. Here's a useful tie-in to that: when I get depressed, I need "Alone Time".....Lot's of it. If it seems that I'm turning down invitations, or don't answer the phone, don't be concerned. It's just that in this weird time, I need to be alone. I'll still churn out this page, and all of the e-mails I can manage!
The cyst/infection is starting to go away.
7 Oct '02 - Yet another infusion today.....Yuck!! I've finally started losing my hair. It's just about gone in an area no one will see, and I have a thin spot on my head. Luckily it's where my part is, so it's not too obvious yet. If it gets much worse I'll have to shave it again, otherwise it'll look like I have the mange.
8 Oct '02 - The fun hasn't really begun yet. Let's hope it goes as easy as last cycle!
I realized the danger of Dexamethosone yesterday. It gave me MAJOR munchies even when I was full. If I'd responded only to the hunger it gave me, I'd have probably eaten until I got sick. As it was, I ate some, waited an hour, ate some more, waited, etc. This stuff makes me ravenous. According to the manufacturer, the effect lasts for up to 3 days. Then, there's the sleep issues it makes. Even after 150% of my usual dose of sleeping medication, I was up for two hours and wide awake when I went to bed. Slept terribly. Probably have to nap today.
Yesterday's infusion was number 6. Thanks to the remission news, that means I'm officially half way through this fun. Then, the radiation starts. I'm assuming it won't be as generally upsetting as the chemo, but I have to go every day for three months.
9 Oct '02 - No news is good news. Still feeling generally OK. A little queasy, a little tired. Hopefully, I'm getting used to the side-effects and it won't bother me too much from now on. If I'm **USED TO** this, I can't wait to see how I'll feel when it's done....probably better than I've felt in years.
10 Oct '02 - Not as easy as last cycle. I spent most of last night fighting the puke. VERY tired/groggy/disconnected. Guess this one's going to be bad.
13 Oct '02 - Haven't been on in a while. This one's been very bad....I've been fighting the nausea for days. The past few days, I'll wake up feeling OK, but within a few hours, I'm tired and nauseous. Despite the nausea, I'm ravenously hungry, but about 1/2 hour after I eat, I get quite queasy. I can't seem to find the right eating schedule or types of food to calm this down. Fortunately, it should ease up as time passes.
14 Oct '02 - Just got back from a check up at Dr. Oncologist's office. No news is good news in my case. Nothing new to report. Still slightly queasy, but not nearly as bad as the past few days.
Since the chemo has put me on a weird schedule, and keeps me away from large numbers of people, I literally can't go in to work during this. But, I feel quite guilty taking this extended vacation and leaving work without my "warm breathing body". Thus, I asked my workplace to send some items here for me to work on when I'm able. MY POINT: I felt better enough late yesterday to actually repair three radios and a cordless phone for work. It feels good to be productive! If the chemo keeps me out of the game for 9 days out of every 14, I won't be overly productive, but it helps that I can contribute.
Dr. Oncologist's Nurse Practitioner seemed particularly concerned that I was so queasy. I guess that's a major issue with them. No real solutions, just more of the same meds.
Hair loss seems to have stopped for the time being. I'm pretty much bald in some spots, but where people can actually see it, I just have a couple of thin spots. Not quite bad enough to make me shave it all off (YET).
20 Oct '02 - Going in tomorrow for the next infusion. Pretty much everything's quiet except my stomach. It's still a little upset. I get heartburn several times a day (even worse than I typically would!!).
I'm also getting out of shape. I hope I'll get a couple of weeks between the last infusion and when I start working again to get my self back physically. I'd like to get a one month membership to a gym so I can at least try to get my stamina back. For the time being, when I am able, I've been hiking. Even a distance as short as two miles has me fatigued.
23 Oct '02 - We picked up some kind of a "bug" on the machine a couple of days ago. Anyone know what it means when when you "Ctrl-Alt-Del" and the program "Robot" is running? I searched high and low for a ".exe" by that name (or any .exe that had been modified within the past week), and turned up nothing. Thus, I wiped the drive clean and started over. All of this is just to explain the delay in getting this page out.
Monday's infusion SUCKED!!! I got a massive headache, VERY queasy, and the odor of the infusion room was making me sick. I haven't felt that bad WHILE infusing yet. Fortunately, the chemo "hangover" I'm experiencing now isn't the worst I've had, but my stomach is all messed up. Quite queasy. My sleep schedule isn't too bad, but the "chemo brain" is back in force. All in all, quite survivable!
24 Oct '02 - Just sitting around the house all day. I get 8 hours of sleep at night, and another 3 or 4 in an afternoon nap. Always tired. No desire to DO anything.
26 Oct '02 - Feeling much better thank you! I was up all day yesterday. Still felt slightly queasy, but the tiredness is going.
This sitting around the house crap is starting to really get to me. I can't be sure if it's the "Chemo Brain", or staring at these 4 walls all day, but I've been experiencing some problems with anxiety. Thus, yesterday I went to see an old friend about some help in that area; same guy that helped me with the previous problem outlined in the "Depression" page on the left screen. Nothing dangerous or long-term, just something to get me by until this cancer thing is settled.
Dr. Oncologist recommended this type of help when I first started getting treatment, but I figured I'd wait and see what developed. Guess I should have taken Dr. Onco's advice from the start.
27 Oct '02 - Just when I thought it was nearing the end!! I'm experiencing the only side effect I've ever heard about from Neupogen: Bone ache!! The bones of my arms are aching. It hurts most when I move quickly, but always there. Ouch!!
1 Nov '02 - Nothing happening, so nothing to report here. This was probably the easiest cycle since I began. Hair's stopped thinning, no meaningful nausea, bone aches only lasted the day. so, Happy Halloween!
4 Nov '02 - Infused this morning. Feel like crap. Felt worse walking out the door than ever before. Computer crashed again (should have known better than to run Win98 on THIS machine. Had to revert back to Win 95. Anyone have an unused copy of Win98"SE" laying around?), so if I've seemed unresponsive, it'll start flowing again.
6 Nov '02 - Pretty bad one this time around. Stomach's shot. Between naps and night-time, I've been getting 11 hours of sleep a day. Can't seem to think straight.
7 Nov '02 - Now getting more than 12 hours of sleep a day. Can't seem to stay awake. Doesn't matter though, when I'm up I feel like I'm going to puke. Hope to get out and take a walk today.
11 Nov '02 - I believe I can safely say this last treatment was the worst yet. As recently as last night, I was nauseous and felt quite weak. I've noticed something in the past few infusions, my larynx hurts during the "hangover" period. I think it may be the "bone ache" associated with the neupogen, but I wonder why only there?
Today is medical tests day. I have blood work, a "how-goes-it" with Dr. Oncologist, and a Pulmonary function test at a local hospital. Just another aspect of being a cancer patient.
I WAS able to take that walk, but didn't get very far before I felt fatigued. Maybe this week.
13 Nov '02 - Some info from Monday's appointment:
-I will be doing radiation after the chemo ends. No real details yet as I'll have to go see Dr. Radiation Oncologist for that.
-I have only 4 more Chemo treatments left. The last one is tentatively scheduled for Dec 29th.
-The Dexamethasone that they've been giving me has eroded my stomach lining. That's why my guts have been so bad lately. The dexameth will be reduced in future treatments, and I'll have to take an acid suppressor daily from now until the treatments end.
Still not 100% yet, but feeling better every day.
18 Nov '02 - 3 more to go. Acid suppressor isn't working at all. Yesterday I puked for the first time. ALL ACID! It burned the hell out of my throat. Nurse at the Dr.'s office said that radiation won't screw me all up like chemo, but could leave me very fatigued. Tough choice between nauseous and able to do something, and generally OK but tired all the time.
19 Nov '02 - So far, this isn't too bad. I'm slightly fatigued, but don't feel half bad. It would be nice to have a couple of easy treatment periods about now.
22 Nov '02 - Didn't realize how long it's been since I wrote here. I've been busy. This has definitely been one of the easiest treatment periods yet. I've been slightly fatigued, but little else. I'm sleeping 10+ hours per day; and VERY tired most of the evening. Not motivated to do much, but pushing myself. I assume that this improvement is due to the reduced Dexamethosone I received. I can't guarantee this last dose was reduced, but I suspect it was since this treatment has gone so much better than usual. When I next see the Nurse Practitioner, I'll ask. Guts are still imperfect, but nowhere near as bad as previously.
**Note: I don't think I've mentioned how this is affecting our finances yet. In a phrase: It isn't!! My employer has simply put me on sick leave for all this time. No disability with all it's paperwork and screwy rules. I'm just on sick time for 8 months. My insurance plan has to be the best in the world as well. All Chemo and surgeries are covered 100%. The only thing I've paid for to date is my flu shot, and 20% of my prescriptions (up to the first $400 out of pocket, after that, nothing more.) When I go over the first of the year, that $400 for prescriptions goes back down to 0, and I'm not sure how my insurer deals with radiation therapy, but so far this has been a breeze.
I'm not a particularly religious person, but if I was I'd say that God's plan for me was perfect. He gave me a serious long-term illness just after I started with a company that treats employees like gold. If not God, this was one hell of a lucky coincidence!
2 Dec '02 - Haven't written here in a while. This past treatment was in fact, the easiest yet. Thus, I've been busy doing the things I've been missing the past few months. I have no less than 5 projects in the works out in the shed, made Thanksgiving dinner for 15 people, hit the favorite bar for a couple, and have been doing dishes continually for the past week.
Today is third from the last. After this, only two more to go. We rescheduled the last infusion to a week later so we could enjoy the Christmas season together. Thus, my last one will be the first week in January (rather than Dec 29th).
This week will be a busy one. We have Chris' company Christmas party on Friday, then a guided tour of the wine trails on Saturday. If this infusion messes me up, I could end up missing the both of them!
I hope the radiation doesn't affect me systemically like the chemo. I'd like to use the time I'm in radiation to get myself back in shape. 6 months of "taking it easy" have left me pretty bad off. Now that this stress is winding down, and I'm closer to the realities about it, I'd like to try to quit smoking when the chemo is done. I'll have those weeks of radiation available, may as well put them to use!
3 Dec '02 - Not feeling TOO bad. A little tired, and some incredible heartburn last night. Slept well though, and not many other symptoms this morning. I guess it was the Dexamethosone after all. They cut my dosage in half. If this entire period goes OK, I may mention to them that they use it differently: start small and work their way up if needed. In my case, starting big caused more problems that it might have helped. It made my first 6 or 8 infusions harder than they needed to be.
6 Dec '02 - Guess I won't need that talk with Dr. Onco's people after all. Been feeling pretty nasty all week. Guts aren't doing too badly, but VERY tired. Getting 10+ hours at night, then a 2 or 3 hour nap in the afternoon. Yesterday, I was able to stay up all day, but only AFTER 13 hours of sleep the night before.
New side-effect: My left hand is numb. Over the past few months it's been going numb while I slept, but always back to normal within a half-hour of awakening. Yesterday though, I never went back to normal. The two "Inner" fingers have no feeling at the tips, and the whole hand feels tingly. B Complex vitamins are supposed to fix this, but so far, nothing.
Thank God it's only 2 more!
9 Dec '02 - This one was a lot easier than some, but not as easy as the previous. Prime symptom was simply fatigue. I slept constantly. It paid off though; by Friday I was alive enough to attend my wife's Christmas party. I only lasted until 10, but that's much better than the previous days.
The fingers of my left hand are still slightly numb, and I've been having sporadic cramps in my diaphragm and legs.
I get the feeling that when I have my lung function checked this afternoon it'll be bad news. My breathing hasn't been great recently. I'm always congested and short of breath. It takes a few hours after I wake up to be able breath normally. I know, I know, I know my smoking doesn't help; but while I'm house-bound and unable to be physically active, I'll never be able to quit. When Chemo is done, I hope to change all that. Fortunately, this lung problem has developed late in the treatments, so it won't be able to progress very far.
10 Dec '02 - Guess my prediction is wrong. Despite how I feel, the Pulmonary folks seemed pleased with my results. Slightly asthmatic, nothing else.
11 Dec '02 - Very little to report. Not feeling bad. Left hand is still numb, and have had a few cramps recently, but nothing serious. I'm not sure if my unusually dry skin is the chemo, or just the cold weather, but the palms of my hands are actually in pain from dry skin. Lots of cracking. No bleeding yet.
17 Dec '02 - I finished my second-to-last infusion yesterday. With it, I discovered WHY I was taking dexamethosone. Around 4 PM, I went out to check the mail. While outside, I coughed. The cough made me stand against the side of my house puking my guts out for 5 minutes solid. Judging from how I feel this morning though, I'd still say it was worth not having any dex. I'd rather puke a couple of times than feel as awful as I have been the past few months. Most of the other side effects of the Dex' are gone: no heartburn, better sleep, no anxiety/depression.
***Now for the BIG news. I saw Dr. Onco on Friday (the 13th). After a thorough look, he declared that I won't have to do any radiation. I should be back to work a few weeks after my last infusion. There's a few details to deal with first though. I'll have to have my port removed, then try to get back into shape. That's why it will be a few weeks after the last infusion, but the "end of the tunnel" is in sight.
18 Dec '02 - Other than the Barfing I did on Monday, this treatment hasn't been too horrendous. I'm losing more body hair, and am quite tired. Having some cramps, and the left hand is still tingling, but MUCH better than some cycles. Everything is a trade-off, but I think I prefer going without the Dexamethosone.
23 Dec '02 - Looks like the host's server went down this weekend. I haven't been able to access my site until yesterday. Thus, the slight delay.
All's well. I still haven't had word on when the port will be able to come out, but it looks like Dr. Onco's people want a couple of good blood tests on me before it happens. Boy, am I looking forward to getting rid of this; I haven't slept on my left side in 4 months.
Smoking cessation classes start on 2 Jan. I assume you'll all have to stay away from me for a few weeks after: I'm going to be a real snot for a couple of weeks. Let's just hope I can keep it up this time!!
26 Dec '02- Merry Christmas!! Yet another holiday down. I trust you all had a good Christmas. I'm doing quite well myself. Nothing to report. I'm hoping my strength returns quickly, there's too much to do and enjoy for my limited stamina. I also hope my memory returns to normal.
27 Dec '02 -Nice Christmas. Not quite what I'm used to because I couldn't keep up with how hectic everything was, but all in all, still nice. Only major side effect is currently the heartburn. I think it's returned due to "other circumstance", but am glad that I have plenty of Prilosec on hand to combat it. Just bought a new machine, I'm still learning to use the new software, so if this looks weird, it should get better.
31 Dec '02 - Happy New Year's Eve. New computer didn't work out, so we took it back. Boy, was it nice to have 5 times the speed and a CD burner.
If I was infusing on schedule, I would have done it yesterday. I'm glad I didn't. I'm looking for a couple of issues to go away before I take my **LAST** infusion: numbness in my hands and feet, dryness in my hands, and my breathing. It's not that I expect these issues to completely go away in a few extra days, but I'd like to see if they diminish at all. It would be tough to work with these problems, and I want to see if I can expect them to eventually go away when the chemo is completely done. Let's all cross our fingers.
2 Jan '03 - Smoking cessation class starts today. Today's session is only registration though. Probably won't quit for a few more days; especially considering that I have chemo on Monday. I don't know what time frame they'll want from me, but I'll probably have to smoke until next Friday or so. (Nicotine seems to calm my stomach better than anything else). God, do I DREAD that last chemo!!
6 Jan '03- The end is near. I received my LAST chemo today. It doesn't matter how bad it hurts, or how sick I get; as I said, the end is near.
Monday next, I'll get my last blood test. Then, I can schedule to get the port out. Once that's done, I'll take a one month membership to a local gym and get back into shape. Then, back to work. (not after a full month, I'm sure it'll only be a few weeks to get into enough shape for work.)
On the Smoking Cessation front: I'll keep smoking until the end of this month. My first class will consist of "preparing to quit". The class is the 15th, and I'm expected to prepare for two weeks. Then, on the 30th comes "Quit date". The following meeting on Feb 13th is "staying quit. That's it!
9 Jan '03 - This last chemo hasn't been much different from the rest: Very tired, slightly queasy, generally feel like crap. I guess I had to have a bad one to remind me of why I never want to go through this again. Fortunately, my schedule has been relatively light this week so I can just take the time to sleep and heal.
Next week will be interesting. I have blood tests, smoking cessation class, Gallium scan, CAT scan, Lung function test, and a check-up on the anxiety. Literally every day next week is full.
But the best news is that Wednesday the week following, I GET MY PORT OUT!!! I'm supposed to wait for the results of the blood test, but went ahead and tentatively scheduled it for then. If there's a problem, I'll push it back. I'll finally be able to hold my grandson comfortably, sleep on my side, or stretch without pain. Boy, will I be glad to see it go. (But, with it's departure, I'll have 3 pronounced scars on my chest. So much for my "gorgeous" physique at the beach :>))
12 Jan '03 - I'm finding it hard to type without many errors. My left hand is more numb than usual. No one has told me if this will be a long-term thing or not. My sleep is also VERY screwed up. Where previously I'd get 8 hours exactly (when in my "off" week), now I can't seem to get more than 6. It makes for some tough days.
I've been trying to stay busy though. I'm always doing something; never just sitting around any more. I guess I've come to understand retirement. You find things to fill your day until the day is as busy as when you were working. It'll be a tough adjustment filling my days with work again!
13 Jan '03- So starts hell week. Appointments out the wazoo. Most just to see if the chemo worked, or how badly it hurt me. None to tell me if the feeling in my hands will return to normal. Any medical people out there care to tell me what B-Complex vitamins can do about this numbness? I've been told to take mega-doses to try to help. So far, na-da.
14 Jan '03 - Two things: The tingling may take months to go away. During that time, I have to continue taking the mega-doses of B-Complex vitamins.
My breathing is fine. Just about where it was when I started this process. (Other than the fact that I'm out of shape and get winded pretty easily).
Today is the Gallium injection and a CT scan.
19 Jan '03 - The Gallium Scan showed no surprises. There was a "spot" on my throat, but the technician thought it may be an artifact from the machine's setup. I didn't get to see the CT scans. Let's just keep our fingers crossed there!
I've begun the QuitSmart regimen to quit smoking. Rather than just throw them all away and suffer for the next few weeks, they want me to switch first to an Ultra-light brand for a week, then an Ultra-Ultra-light for another week. That way, when I actually quit my body will be used to having almost no nicotine in me. That sounds reasonable to me. The patch will cover any nicotine cravings I may still have, and I can focus on not having the habit any more.
I've had the cold from hell the past few days. Since I haven't had a nasty one in years, I wonder if my immunity is still down some. Either way, I haven't really been out of the house in two days, and have slept 16+ hours per day. Luckily, It's feeling much better this morning.
Port comes out wednesday. Thank god. I'm so sick of this lump of plastic in my chest. It hurts whenever I lay on my side. (Heck, it hurts right now and I've done nothing to cause it.) I'll finally be able to hold little Matty close again!!!
20 Jan '03 - Did I say I have a cold?!? I haven't been this disabled in ages. Fever is hovering between 100 and 101, my eyes are constantly burning, stomach is queasy, I can't breathe (hurts, then starts a coughing fit), neck is sore, ears ache...... Dr. Onco's office prescribed an antibiotic today. Yup, my immune system is still down. I hope it starts working soon, 'cause after 5 days of this, I need to start living a life again!
27 Jan '03 - I'm still here. So let's catch up:
-The cold's still not completely gone, but much improved. The Oncologist's office said that I'll be more susceptible to colds and they'll be more severe than usual. My immune system will be diminished for several months.
-Numbness and tingling still there. It'll also be months for that to go away.
-Port's out. They gave me a decent "rant" when I went for it's removal though: The girl that was supposed to schedule the removal (schedule the operating room, schedule the Doctor, etc) didn't understand what I was having done. She only scheduled me for an office visit. When I arrived, the doctor asked "why are you here? I don't need to see you beforehand!" I hit the roof. I told these people that I'd waited for a week and a half for an appointment, and I WASN'T going to wait another week. The doctor was very kind. He rearranged his schedule and got me into the operating room as an emergency. About an hour after my port should have been removed, he removed it. I certainly hope he ripped the scheduling chick a new one!!
Since then, I've had no trouble at all. It hasn't hurt much, hasn't bled, and seems to be healing nicely.
-I turned in my "return to work" notice today. I can go back on Feb 16th. I'm not sure where that will fall on the actual work schedule; it may be a couple of days later that I actually start work. In the meantime, I'll just be trying to get my wind back. So far, I haven't found a gym with a short term membership. Their loss.
30 Jan '03 - Today was quit day! So far it's been unusually tough. The last time I seriously tried to quit smoking it didn't really bother me until day 3 or 4. Guess we'll just see what happens. This time, I have alot of support and "tricks" from the pros. I hope that makes a difference!
The steri-strips the surgeon put on my port incision are still holding on VERY tightly. Thus, I can't even see it to see if it's healing OK. When I tried to remove the strips, I actually started removing skin with them. I guess I'll just have to be more patient and wait for them to eventually fall off.
1 Feb '03 -We begin day 3 without a smoke. From tomorrow on, I will have gone longer without than ever before. 4 days has been my limit since I was 15 years old (Including Basic Training and a bout with pneumonia). I'm definitely feeling it today, but am still hanging in there.
I had my wife rip the steri-strips off last night. The wound is completely healed except for a 1/4" scab at one end. Now that the bandages are gone, I'll be allowed into a pool to get my wind back.
4 Feb '03 - Day 6 begins. Cravings are much worse. Just holding on hour by hour. It's VERY hard to remember why I quit in the first place (but with my current lack of concentration, it's hard to remember much).
I think I heard Rush Limbaugh imply yesterday that he had also given up his Cigars. I like having someone I admire "joining" me in this effort. It helps keeps me from feeling like I'm giving up my membership to an exclusive club. For the past 25 years, I've primarily identified myself as a smoker.
Note: I haven't gone 6 days without a smoke since June, 1978.
6 Feb '03 - Does the urge for a smoke ever end? This is day 8, a new record for me. Yesterday, I had the strongest cravings/urges I've had yet. I can feel them coming on this morning too. Shouldn't it be getting better?
Otherwise, nothing much going on. I may be back to work in 10 days or so. One minor bit of cancer-related news: the reduction in my ability to fight bacterial infections has caused another problem......I got 3 cavities in the past 6 months. I guess the immune suppression causes the harmful germs in one's mouth to flourish. Bummer!
10 Feb '03 - Back from the dentist. All 3 cavities are filled. A particularly painful experience this time. I certainly hope his sterilization methods are effective as he had to inject anesthetic straight into my jaw bone. Otherwise, just getting ready for my triumphant return to work. I've procrastinated about calling over for my schedule, thus don't know it YET!
Haven't had a smoke in a week and a half. Looks like this will last. I just hope the cravings go away completely. I have few of them, but when they come, they're strong.
12 Feb '03 - Tomorrow will be two weeks without a smoke. I'm still a little concerned about statements people make like "in 20 years, not a day has gone by where I didn't want a cigarette". From many people I hear that the intense cravings go away, but the urge stays forever.
My jaw still hurts from the dentistry. Not where he drilled, but where he injected the novacaine.
I have my work schedule. Day shift, Tuesday thru Saturday. A nice easy schedule. I'll start next tuesday, the 18th.
**Since I brought it up; when I return to work, this page will no longer be updated. I will consider that the end of my cancer ordeal. Feel free to check in until then, but after then, I doubt I'll have the time to update it regularly, and also doubt I'll have much content to put here.
16 Feb '03 - Well folks, it's been a weird 6 months. I appreciate all your help and support. I couldn't have survived this without all of you. Thank You
I'd like to especially thank my lovely wife for all of the rides and daily injections. My employer deserves much credit too. They provided me with the time and finances needed to beat this thing as quickly and simply as possible.
This is all leading up to my tear-filled good-bye. I still have many of the effects of the chemo; I heal slow, get infections easily, have numb hands, can't carry a meaningful conversation, etc. But I've been assured that will subside within a few more months. There seems to be no point to recounting the details of these lingering effect's departure. So this is about it.
Finally: tell your friends and family about this. Cancer happens, and will happen to many of us in our lifetimes. Use this as a place to show them that cancer isn't death, it's just damned annoying. If a fat, out of shape 40 year-old smoker can beat it, anyone can.
13 May '03 - Well folks, here we go again! I received a telephone call from my oncologist last night at 8:30 (any time a doctor is trying to get hold of you at that time of night, you get nervous)!! I had taken some tests to determine why I had incessant itching all over my body. One of the tests seemed to show that the Hodgkin's was back. I have another test Wednesday, and will soon have an appointment with Dr. Onco on Friday. Let's keep our fingers crossed!
14 May '03 - PET Scan today. This scan is quite similar to a Gallium scan except the radioactive material is absorbed quicker (hours instead of days), and results are displayed in color. I can feel another lump under my right collar bone again. Dr. Onco's appointment has been moved to Thursday. Apparently he wants to get going on this as quickly as possible!
15 May '03 - Damned bad news. I seems that my form of Hodgkins is more virulent/prolific than the ordinary. It has regrown and spread. I am stage IIB now. What's coming won't be as simple as just chemo or radiation. We're jumping straight to Bone Marrow Transplant. The events are as follows: This Monday, I'm admitted to the hospital for intensive chemotherapy. This chemo will be 3 continuous days long out of every 14, and last for a month. Then, I'll be admitted to a different hospital where they'll harvest stem cells from my blood. Once we have enough stem cells, I'll be hit with chemo and radiation enough to ABSOLUTELY kill the cancer. Unfortunately, that much poison will also kill my bone marrow. Thus, the harvested stem cells will be reinserted and my marrow regrown. The tricky part about this is that for 20 to 30 days, I will have absolutely NO immune system. I could be killed by a simple head cold. While there, I'll be in partial isolation. My visitors will be severely limited.
This whole thing has hit home like the last round of treatment didn't. Before, I had absolute faith in the system. I simply get the treatment, the disease is gone, and life goes on. Now, my faith has been shaken enough that I seem unable to stop crying. My main thoughts are about putting my affairs in order; I just can't see much future right now.
Folks, this is scaring the shit out of me.
17 May '03 - I guess getting involved helps. I'm pursuing a second opinion. In doing this, I've also discovered that the University of Rochester (about an hour's drive away) runs one of the best lymphoma treatment programs in the country. Thus, in addition to getting the best second opinion I can, I MAY go there to get the best treatment I can. Doing all the research and actually getting my records to one of their doctors has kept me quite occupied and improved my outlook considerably.
23 May '03 - Just got back from my first relapse chemo. The same old crap with a sadistic twist! I have to stay in the hospital for three days to receive it. I don't feel that bad right now. I've been told this chemo will sneak up on me and hit me a week after I receive it.
I obtained quite a bit of info about the stem-cell/bone marrow transplant from the folks in Rochester. The more I learn, the less I want the procedure. The chances of severe long-term side-effects are quiet high. The chances of dying during the procedure are also quite high.
25 May '03 - I'm pretty tired, weak, and "Spaced-Out". I got back from the latest round of Chemo on Friday afternoon. I've pretty much slept and done nothing since. It appears that this type of chemo is more destructive to healthy tissue than the previous type.
The nurse that removed my catheter screwed it up and hurt my arm quite badly. There was a wad of "fibrous tissue" collecting on the end of the catheter. When she yanked it out of me, she scraped the inside of my veins like cleaning a gun barrel. Now, my arm hurts from the shoulder all the way to the elbow.
I really wish things would get back to business as usual around here. Despite what's going on, our emotional well-being is deteriorating rapidly. We're both constantly glassy-eyed and have constant headaches. I think it would make the entire ordeal much easier if we simply continued on like normal. Even if I died tomorrow, I'd rather have that one normal day than the several screwed up ones we've had lately!
What I really need in all this is an informed person to talk with. My doctors only seem to see the technological challenge of my disease. They won't discuss quality of life issues with me. Thus, I can't get informed about what treatments I actually want, and what I'd rather not go through. If a treatment will leave me alive but disabled, is it worth doing at all?
1 Jun '03 - The arm is feeling much better now. It took over a week, but it has healed. I took a "Neulasta" injection last week. It's quite similar to the neupogen I was taking during chemo, but instead of one shot per day, this is one shot per week. The biggest drawback to this thus far, is Bone ACHE!! Ouch. I spent most of yesterday sitting around the house because of the pain.
I discussed the merits vs. drawbacks of BMT with a local BMT survivor. Unfortunately, she still has some lingering side-effects that make me view the procedure nervously. I probably couldn't afford to have my immune system suppressed for up to two years after the procedure. Still not totally decided on this one, and unable to find a medical professional willing to talk candidly.
5 Jun '03 - Off to Rochester today to meet with the BMT team. I'm hoping they'll be willing to answer the questions that my Oncologist has been avoiding lately.
Had an appointment with Dr. Onco yesterday. Since this latest round of chemo has had little effect on me, we decided to move my next chemo up by a week. Thus, I'll be back in the hospital Friday until probably Sunday nite. Blood counts are OK.
14 Jun '03 - Sorry about the delay. Been a lot going on recently. Currently, I'm 3 days out of chemo. The chemo was delayed both due to a scheduling error, and the hospital's incompetence. Either way, I'm on day 3 since I was released, and still not feeling up to par. I'm really wondering how I can deal with several weeks of feeling like this when the BMT comes along.
I'm still not 100% decided on the BMT. I'm leaning that way, but with all the trouble from this chemo, I'm still not sure.
The folks in Rochester were *slightly* more talkative about odds of survival and quality of life issues. It doesn't sound as bad as I'd imagined.
17 Jul '03 - I probably shouldn't think about this decision I face while I'm hurting from the chemotherapy. I get quite depressed in that state, and generally just want to end all the pain as quickly as possible.
Did a PET scan yesterday and have a CT scan this morning. Then off to Dr. Onco's office for blood tests and a consult with his nurse practitioner. For those of you who know where I did yesterdays test, I will NEVER go back there. They hurt me, they were rude, and took twice as long as my previous.
29 Jun '03 - Looks like I'm going through with the BMT after all. No matter how nasty the procedure, I'd like to see my daughter graduate from college, see my grandson go off to school, or even see my grandson graduate. Like it or not, the only way I'm going to be around long enough for that is to do the BMT (SCT). Thus, the schedule is:
30 Jun - Get a "pheresis" port installed. This port will protrude through the skin of my chest. No showers for a while.
1,2,3,Jul - Another round of chemo.
4 - 16 Jul - Huge amounts of Neupogen injected daily to make my stem cells grow quickly.
10 - 16 Jul - Harvest stem cells. The exact date(s) of harvest are determined by how many my body has grown, thus it could be anywhere during this time period, and could take several days of harvesting.
End of July/Beginning of August- Transplant. The timing of this is mainly determined by when they can get me a bed.
5 Jul '03 - Back from Chemo and feeling like crap. It's hard to tell if it's the chemo or the heat though, as we finally broke 90 degrees. As is typical, I'm sleeping 14 to 16 hours a day right now. I assume that soon that'll calm down and I'll be back to my usual 10+ hours a day.
This new port is quite annoying. It "dangles" down my chest like three strands of beads. (****See Picture below) Whenever I roll over in bed, I have to move the tubes with my hand, or they'll get crushed under my arm. This takes some getting used to!!
Port or no, I took a shower today. I figure it's pretty demeaning to install a device like this on someone and THEN tell them they can't bathe in 90+ degree weather. Screw it, I'll risk the infection. (Besides, my white counts shouldn't be too low yet).
Today starts our home care for me. We have to flush the port out daily with 6 syringes of chemicals, then inject me with 2 separate shots of Neupogen. Yuck!
6 Jul '03 - Luckily, the neupogen hasn't caused any incredible bone ache yet. Let's hope it stays that way! I'm starting to come out of the chemo hangover. Feeling much better (but I haven't had my 8 injections yet today!).
11 Jul '03 - Guess I spoke too soon. Bone ache was bad enough to get me out of bed at 2:00 AM. It kept me up until I took some synthetic morphine they gave me. Today, I'm off to Rochester to see if they can start taking stem cells yet.
12 Jul '03 - In a few minutes, I'm off to Rochester again. They decided to take stem cells yesterday, but only got less than half of what they needed. Thus, I go back today to try to get the rest. Unfortunately, the only way to know how many we have is to perform a 2 hour test AFTER the collection is done. I have no way of knowing if I must return until I'm already home.
***Later that day- They did a much better job of collecting cells today. I won't have to go back tomorrow. That also means I won't have to take any more neupogen for a while. The bone ache should subside soon. I'm tentatively scheduled for the transplant to begin on the week of July 21st. Let's all cross our fingers that it can actually happen that early. Since I'm so otherwise healthy, I'm fairly low priority for the procedure and can be "bumped" by someone sicker.
19 Jul '03 - I feel guilty for not writing anything recently, but there's really no news. Since I may get my available bed in a bit of a hurry, I may not even be able to tell anyone (via this medium) that I'm in and things have started.
23 Jul '03 - According to the folks in Rochester, I'll probably be admitted Thursday or Friday (the 24th or 25th). In preparation, I've been trying to live a little healthier: eating better (more liver, more vegetables), exercising, and sleeping a lot. Just like last year's chemo, the healthier I go in, the quicker I'll recover. I'd prefer to keep my hospitalization as short as possible.
24 Jul '03 (6:00 AM)- Was contacted late yesterday. I'm being admitted this morning. Wish me luck. I'm so apprehensive that I have heartburn and couldn't sleep at all.
25 Jul '03 - I received my first of 4 chemotherapy medications last night. I'm not sure of the name, but it's called BCNU by the nurses. The chemo doesn't seem to have done anything to me, but one of the "preparatory" meds sure did!! They gave me massive amounts of Benadryl before the chemo. That stuff had me higher than a kite for a while, then I simply woke up 3 or 4 hours later. I must have passed out at some point. Then, I slept fairly well until the staff started waking me up for vital signs or medications. On my current schedule I can't sleep for more than 4 hours continuously.
26 Jul '03 - Whoa!!! It has hit. I have some extreme nausea right now. I'd hoped I'd go a little longer before the nasty side effects hit; sucks to be me! Am also quite tired: both from the lack of sleep around here, and the anti-nausea medications. Just generally not a fun day. The worst part is knowing I've only completed 2 of the projected 21 days of this.
28 Jul '03 - The worst of it has passed. Seems I had a bit of a fever on Saturday. That's part of why I've felt so nasty.
My lovely bride wanted me to explain this process in much more detail to hopefully help you, my friends and family, understand exactly what this is like. She also wanted it available as a guide to anyone considering undergoing a treatment like this.
My chemotherapy regimen is:
1st Day: BCNU - one bag given over an hour
2nd Day: Etoposide and ARA-C - an hour for each every 12 hours until my 5th Day
6th Day: Melphalan- one bag, 15 minutes.
The BCNU, Etoposide, and ARA-C haven't caused me much problem yet. I've had some mild nausea, fever and malaise, but nothing earth shattering. I've been told though, that the Melphalan is the nastiest stuff. With that, I WILL get mouth sores, vomiting, sore throat, and diarrhea. Fortunately, it takes a few days for those s\side effects to show up, so I should be OK for another week.
In addition to the chemo and what it does to me, there are meds to prevent side effects.
1. I take two separate viral suppressors. Since viruses can't be killed like bacteria, they make meds that suppress their growth. Thus, Simple viruses like chicken pox won't come back to attack me when my immune system is down.
2. Two separate anti-nausea meds. One is a slow acting preventive med that is supposed to suppress the brain's desire to hurl. The other is (Our old favorite from last year's chemo) Lorazepam. That stuff makes me quite high and tired.
3. Something to protect my kidneys from the chemo. This type of chemotherapy is metabolized primarily in the kidneys. Apparently kidneys can shut down if they're overworked in this way, thus I'm given medicine to help protect them.
As for today, I woke up with a lump in my left armpit. The doctors think it's just an irritated hair follicle. They also can't figure out why my left ear hurts. Said it didn't look like an infection. Guess we'll wait and see. It's kind of unique having to worry about every ache and pain as if it could kill you.
I haven't been hungry for days. Anyone that knows me knows that I have the appetite of a horse. Now, my stomach always feels "on edge". Any time I eat, I get very bloated and nauseous. Thus, my desire to eat is greatly reduced. Heck, I've lost 7 pounds so far.
29 Jul '03 - There seems to be a discrepancy between many things I was told BEFORE I started this procedure and what I'm being told now. First is timing: From the sounds of it, the only way I'm going to get out of here on day 14 (coincidentally, August 14th), is if I have some kind of medical miracle in my recovery. Many here have the opinion that I'll be here for a week longer. Next is how I'll actually feel: Before I came here, I was told that all of the symptoms I'd had described were "worst case" and that some people get different side effects, and some get none. Now, they're saying that with the chemo I took this morning (the last, by the way), I WILL get mouth sores, diarrhea, and severe nausea. **I'm just ranting because I feel slightly misled about these side effects. Even if I'd been told the truth, it probably wouldn't have made any difference in my decision.
Today I was given Melphalon. The quantity was quite small and infused over only 20 minutes. While it was infusing, I had no symptoms at all, and only feel "oozy" now because of an anti-nausea medication they gave me. All in all, not a bad process today.
I did some research about the preservative they use on my stem cells. The presence of this preservative forces them to give me several medications to counteract it's effects. The preservative is DMSO. DMSO (DiMethyl Sulfoxide) is an industrial solvent that is a by-product of paper production. It is also used as a carrier to absorb medications through the skin. In my case, it causes severe allergic reactions.
Counts are still dropping. I'm down about 1/3 of where I began. The chemo is also causing my electrolytes to get messed up. My potassium is up, but my magnesium is way down....even more medications to be taken! I wonder If I'll be "aware" when my counts actually hit zero?!?
31 Jul '03 - I get my stem cells back today. The process seems a little rough. As I said before, the DMSO can cause major allergic reactions, so they pump me full of steroids, anti-inflammatory, antihistamines, and anti-nausea meds. These will keep me pretty high all day.
I've had mild nausea since early evening yesterday. My counts are still dropping, but nothing dangerous yet. By the way they count my stay here, Today is day 0. Thus, when next I write here, it'll be day +1 and August.
1 Aug '03 - What happened to yesterday? I slept from around noon to 4:00, then went to bed for the night around 7:30. I guess the combination of drugs and reinfusion was enough to just wipe me out.
The medical procedures are pretty much done now. All that's left is to wait for my blood counts to come back up. Of course, while we're waiting for that, I will "slough off my gut" in the words of my BMT doctor. What that means is that the melphalon Chemo from day -5 won't allow new digestive tract cells to grow for up to two weeks. Thus, most of the lining of the entire digestive tract (from mouth to the "other" orifice) will die off and not be immediately replaced. This is the source of the heavy nausea, mouth sores, and diarrhea that I've been told to expect. I am hopeful though, that since I had little digestive issues on my previous chemos that this chemo will be similar.
2 Aug '03 - Sounds like today may promise to be a strange day. My counts are low enough that I need a red blood transfusion. They'll be giving me 2 units over a 7 hour period. Thus, my day will be pretty much spent in bed.
Looks like my gut has begun sloughing as well. The nausea isn't alot worse, just more often. The other end is starting to flow.
In Dorothy's words "there's no place like home". I wish more than anything that I could simply do this in my own home. This setting is actually NOT conducive to healing for me. It just makes me long for all that I miss.
3 Aug '03 - They started me on IV antibiotics last night. I had a slightly elevated temperature that went back to normal quite quickly, but apparently the doctor is concerned enough about these temperature "bumps" that they decided to go ahead with the medicine. This isn't a major worry; I've heard EVERYONE gets a fever and antibiotics with a BMT!
The nausea and diarrhea aren't tremendously bad. If this is as bad as it gets, I'll consider myself lucky.
My lovely wife will be visiting today, so the boredom will be relieved some. YAY!!!
4 Aug '03 - It's finally time to declare: The marrow's dead! The count of actual white blood cells is below 100. This number was 1500 when I arrived. I must wear a mask whenever I'm out of my room. I have to follow a careful dental care regimen, as the natural bacteria in the mouth can thrive with my reduced ability to fight them. Also, the Melphalan has killed off the lining of my mouth which, in itself, can cause mouth sores. For the most part, I feel OK. I have waves of nausea that go from nothing to "not real bad". Otherwise, no other aches and pains...no concerns...just a desire to leave this ludicrous situation.
***(Later that day....) I have my first mouth sore. It's way in the back, and doesn't really hurt much at all. I've also been experiencing "adrenaline rushes" that my nurse thinks might be caused by being so cooped up today. Thus, I'm going out to the circular hallway around the nurses station to walk a few laps around.
5 Aug '03 - Marrow is still dead. I am what they call in "NADIR". I have no idea what that stands for. Operationally, that means that I received a transfusion of platelets already, and will, over the course of the next 5 hours, be receiving 2 units of Red Blood Cells. My white blood count is absolutely zero, and my Absolute neutrophil count is also at absolute zero. My Red Blood count is at 23, and my platelets are at 9 (vs 16 yesterday, and 217 when I arrived).
I'm being told that my stem cells should start regrowing the marrow by the end of the week. After that, if I'm still generally healthy, I can expect to leave here after 3 or 4 days of returning counts. Boy, do I hope so!!.
6 Aug '03 - It's Alive!! It may be early to make the official pronouncement, but my counts are (very slowly) starting back up. The absolute neutrophil Count which was originally around 1700 when I checked in here, and was 0 yesterday, is now 10!! The White blood cells have risen from less than .1 TO .1!!! Obviously, these numbers are barely perceptible, but they provide some hope.
Otherwise, I feel about the same as I have for the past few days. Occasional nausea and tiredness are my prime symptoms. I've been told that "upon further review of the hospital's policy, I can leave the unit but it's ill-advised". I use that to mean I can walk the emptier halls of the hospital after normal business hours when areas of the building are deserted. I'd go completely nuts if I was TOTALLY confined to this unit. My visitors are still limited though. More people equals more germs.
7 Aug '03 - The two week mark has arrived. It surprises me that I've been here that long. I haven't spent more than 4 days away from home since we bought the house in '94.
I don't feel as good as I did yesterday. I feel groggy and tired. I get dizzy when I stand up fast, and I'm a little queasier than I have been. Perhaps I was a little too optimistic yesterday. I don't have my absolute Neutrophil count yet, but in all other areas, my counts are unchanged from yesterday. Typically, when I get a cold or the flu, it runs like this is. Once I start treating it, I feel a lot better on the first day, but not as good on the second.....BUT, on the third, I feel fantastic. Thus, I'm not too concerned about this "step back". Tomorrow will be better.
8 Aug '03 - Counts are in; no better than yesterday. now though, I have the added complication of a fever. It's still very low-grade, but persistent. That, and the lack of counts is getting quite frustrating. I just want this to be over.
10 Aug '03 - Fever is still there, but higher now: 101 degrees. Counts have finally started up, but quite slowly so far. My ANC this morning is 28 (vs. 1600 when I arrived), and my White Blood Count is .7 (vs. 3.1 when I arrived). They're getting there! Though at this rate, I can't guarantee I'll be released on the 14th as we've been expecting. Nothing to do but wait and see. Since this fever is kicking my behind, I'm pretty tired and "dragged out" all the time.
11 Aug '03 - Fever is still there, around 101. By a process of elimination, the doctors believe the fever is caused by an infection in my catheter. Thus, I may get the catheter removed today. No More Udders!!!
I have my first triple digit ANC of this process: 128. All other counts are about the same.
The doctors seem to believe that the fevers should quickly disappear when the line is removed. Thus, I could be out of here as early as tomorrow. Assuming the fevers are gone by morning.
12 Aug '03 - The fevers have abated, and the counts are WAY up. Throughout the night, my temperature has steadily dropped from around 101 to the 99.5 it currently is. Hopefully it will stay that way for a while.
The counts on the other hand, have not been steadily increasing.....they've been jumping! My ANC is 750, and my white blood count is 2.5. That's high enough that I don't have to wear a mask any more.
About the only issue that remains to getting me out of here is this silly catheter. I want it out. I don't want to have to mess with flushing, dressing changes, or visiting nurses when I get home. I simply want to be able to enjoy what remains of the summer while I heal from this ordeal.
I still feel quite weak, and my guts aren't functioning properly yet, but I've been told those issues may take months.
****Later that day- It's about 2:00 PM. They just tried to take the catheter out. No luck. The NP cut and tugged, cut and tugged, and cut and tugged again. This line is stuck. Thus, they have me on a waiting list for a more "surgical" setting to have it removed. It may be late tonight before they can take me. My luck, the one thing that could keep me here another day just might.
13 Aug '03 - I got lucky. I got a spot in surgery about an hour after I wrote my addendum to yesterday's entry. It was a very minor thing to loosen the line enough for it to pull out. Thus, the last issue went away last night. The fever subsided with the line's removal.
This morning I was up with the sun packing everything to go. Chris arrived around 9:00, and I was released within an hour. I have many follow-up appointments, but it's much better to be at home running around than cooped up in that hospital.
Now that it's all said and done, I can truly say in some ways it was worse than I imagined. I feared being left an invalid, or being somehow disabled from the experience. That wasn't the case AT ALL. I was one of the few ambulatory patients on my ward. I was one of the few who wasn't continually sick, tied to a toilet for hours a day, laid up in bed for hours a day, weak, feverish, etc. I was the exception to all the conditions I was warned about. BUT, that worked against me because the entire procedure is set up for people who ARE unable or unwilling to care for themselves. The treatment expects patients to sleep 16 hours a day and spend the rest of their day on the toilet (swallowing pills, being tested, bathing, eating, etc).
For me this was a torture of incarceration. I was given a mere 3 week sentence with semi-isolation. I came to realize that that is worse for me than the alternative. I am (was?) a very active person. I like to be up "doing something" all the time. Being closed up in a room tethered to an intravenous pump for more than 8 hours a day was simply unbearable. Bottom line: if it doesn't work, I'm not going back. Although it wasn't bad in the way I expected, it was bad.
16 Aug '03 - The past couple of days have been incredibly hectic; primarily spent reacquainting myself with with my grandson. My lack of energy caught up with me last night. I just sort of suddenly fizzled out in the middle of a church carnival. One minute we're playing, the next, I *HAD* to sit down. For the remainder of the night, I couldn't be active. I tired too easily. I guess it'll be a while until I'm able to enjoy activities as I used to.
19 Aug '03 - Not a lot has changed. Still getting tired very easily. Slept nearly 12 hours the night before last, and got in a 3 hour nap. We're checking counts twice a week now. Yesterday's results were confusing. Red Blood and Platelets were way up, but White Blood and ANC were down slightly. I have an appointment back at the Bone Marrow Transplant Unit tomorrow. I assume I'll be able to get more answers then. The "gland" beneath my left jaw has been aching for a few days....no fever, no swelling...just pain. I hope to have that checked out Wednesday as well.
****Note: A great many of you have been calling and writing in the hopes of talking to or seeing me. Please give me some time. I feel generally unwell. I find it hard to keep up with the day-to-day routine of my own household. It's nearly impossible for me to give up a 1/2 hour on the telephone. That's about 1/10th of my time awake each day!! As I improve, I'll have more discretionary time available. Just bear with me for the time being.
3 Oct '03 - This site just sort of fizzled out...BUT, due to popular demand, here's an update:
I feel generally OK now. I'm still fatigued, and I get colds easily, but for the most part, no complaints. I have tests next week as a precursor to radiation treatment which could start as early as the week after next.
I have gone back to work. My employer decided to ignore their written policy and fired me for taking too much time being sick. After some legal maneuvering, I was reinstated, but had to return to work immediately; healed or not. I hope I can continue to perform during the radiation.
Chris and I took our first vacation in 13 years. We went south. We visited everyone we know along the way including Mickey. While on the return leg, we forcefully met a South Carolina deer. Thus, we were stranded in paradise (Myrtle Beach) for 3 days getting repaired. That delayed our trip north until hurricane Isabel was in full force. What a drive back.
15 Oct '03 - The tests are done; just waiting for the doctor to contact me concerning when radiation starts. Work's been very tough. I assume it's because I did very little physical activity during treatment and I'm just out of shape. I would have liked an opportunity to get in shape in in a more controlled manner, like at a gym.
Otherwise, there's no outward indication that I'm sick.....the hair's growing back. With no treatments happening, I feel like a normal person. I certainly hope the radiation doesn't cause problems; I'm enjoying this quiet time right now.
15 Nov '03 - Once again, people are asking about this page. Since I'm actually involved in treatment again, I guess it's time to resume the regular updates.
I've started radiation treatments. I get these treatments from the same group of Oncologists that have been treating me all along; but these people conduct their business VERY differently.
The first appointment I had with the Radiational Oncologist didn't go well. The doctor was 55 minutes late seeing me. He simply asked some questions about the progression of my disease (questions he could have answered himself if he'd bothered to read my chart), told me was going to give me "3600" over the next 20 days, and left. He never explained how or where this radiation was to take place, never explained the preparation procedures......nothing. I filed a complaint with the office manager.
On my next visit, I waited about 75 minutes to see a technician for the preliminary X-rays. I filed another complaint with the office manager.
The third appointment was the winner. When I arrived, the technician was looking oddly at me. A couple of minutes later he pulled me to the side and told me they hadn't done the proper preparation on me, and my appointment was canceled. I filed a complaint with the representative of the group owners.
The fourth appointment and first treatment, they only took me 45 minutes late. BUT, rather than get the treatment, they had me see the doctor first. After he and I had a quick discussion on where I was and wasn't going to be receiving the radiation, he got in my face with a "do you have a problem with me?" attitude. I told him that since I STILL hadn't received any treatment from them, I couldn't speak to their medical competence, but administratively they stunk. He seemed angry, but didn't push the issue any more.
The problems aside, I've had two treatments so far. The area being nuked feels slightly warm internally for about 6 hours afterwards. Otherwise, the only other sign that I'm being treated is the magic marker all over my chest. They initially used the magic marker to make non-permanent reference marks to allow them to aim the beam accurately. Now, they painted more marks just to make a photographic record of my treatment area. They tattooed a couple of small marks on my chest and armpits. Once this marker wears off, the tiny tattoos are all that will outwardly show.
I've been told to expect two side-effects from the treatment: extreme fatigue, and very painful sore throat. Despite the problems I've experienced at work, I've been assured by the head of Human Resources that if I need to take time off due to the fatigue, I can. The sore throat is something that will prevent me from eating for a few weeks, but should dissipate within two weeks of treatment's end.
Once this treatment is over, the plan is for me to FINALLY start college. I'm enrolled, but unfortunately I enrolled a few weeks before the cancer came back. Thus, starting my coursework was put on hold until the treatment ended.
27 Nov '03 - Thanksgiving '03 - The first symptoms/Side Effects of my radiation treatment hit today (of all days). I feel like I have a HUGE lump in my throat. It's particularly tough to swallow food. Thanksgiving dinner was actually painful at times. I've been told to expect this. I've also been told to expect some weight loss. I can see why.
I've also been quite tired at work. At around 6 hours into my night, I just feel like laying down for a nap. I'm so tired I have a hard time keeping my eyes open. Were it not for the fact that I feared being FIRED, I'd take some sick time.
15 Dec '03 - Seems like I never have time to update this page anymore. I'm doing a bit of woodworking for Christmas presents, and hoping to start college soon, working many hours, shoveling, etc.
My radiation ended Wednesday. I have a raw patch of skin on my back, am slightly short of breath, and my throat hurts like hell!! All in all, not bad at all considering how bad it could have been. The skin and throat problems should go away soon, and the shortness of breath SHOULD go away (at least I really hope it does). So, now I'm considered "cured" again. I'll go for quarterly check ups for the first year couple of years, semi-annual for a few years after that, and annual after that. If it stays gone, we'll know I'm cured. If it comes back, I'm not cured; depressing thought isn't it?!?
28 Dec '03 - Looks like this page is about to grind to a halt again. The radiation's done, the hair on my chest will be gone forever, throat feels better, and I'm gaining weight like no one's business. I've worked (minimum) 40 hour weeks for a few months now. Until it comes back, there's nothing more to say.
Just like the last time we were in this position, thanks for all the help. Your support helped prop the two of us up when things got tough.
15 Feb '04 - Not quite done yet. This week was my first quarterly follow-up. So far I'm still cancer free. BUT, I have pneumonia from the radiation treatment. I'll be spending two weeks on the corticosteroid Prednisone. Much like the last steroid I took, I've been having intense heartburn and some anxiety problems. It's only for two weeks though. In that short a time, I could withstand anything. This will help prevent further lung scarring, so it's definitely worth it.
26 May '04 - The February check-up bothered me. My blood counts were still off: my White Blood Count was around 3300, the "normal" range is 4000 to 10000. I wanted to change that and truly get back to where I was before the transplant. Thus, I've been trying to take good physical care of myself. I started out by taking a multi-vitamin a day; for the past 3 months, I've missed one vitamin.
My eating habits have changed quite a bit too. I try to eat many vegetables with my meals. At least one day a week is meatless. I rarely eat starches; no potatoes, bread, pasta. Instead of pigging on junk food when I get home from work, I eat an orange or a couple of pickles. Both low-calorie and the orange provides added vitamin C. That's not to say I'm a diet freak. One day a week, typically my saturday, I eat what I want and in whatever quantity I feel like. Although I CAN pig out, I've found I usually don't feel like eating very much.
Then I decided some exercise was in order (I weighed 244 lbs on that visit). I started out walking as fast as I could for 45 minutes a day. At first, I was huffing and puffing after the first 10 minutes, and could barely go a mile in that time. After 6 or 8 weeks of that, I found that I couldn't elevate my pulse over 120 no matter how fast I walked......so jogging was in order. I started off by walking some, jogging some, walking, jogging. I didn't want to over-exert myself and strain something! Now, I can keep a decent pace (5.5 MPH) for about 35 minutes. I usually end up going one direction running, and walking back the same path. That means that I'm covering about 4 to 5 miles per day, every day. BUT, my knees are starting to get stiff and sore. Looks like I'll have to find another exercise that's not as tough on my knees.
The results? I weigh less than 220 now (about where it was before the cancer began), and on my last check-up in April, my White Blood Count was up to 4700 (low-normal). I can't wait for the next check-up. I hope my counts are considerably higher than that.