Saturday, May 31, 2008

Vulnerability

I am happy to say the radiation burns and boils are healed. The skin is still red or pink in some areas, but the skin is no longer open or raw and the boils have completely disappeared. Lately I have only had to deal with the strange sense of vulnerability that showed up with the chemotherapy. It's subtle, but the concerns I have are so not me, that I know its a side effect.

For instance, when I wake up I immediately feel as though I have done something wrong or let Daniela down. I shared with her how strange it was to wake up feeling that way and she started laughing at the absurdity of it. Of course I was quick to join her. Then I'll start to feel guilty because I'm not working which is followed by the realization that I'd be about as useful as a two-year old lifeguard. Between the constant pain and my brains spaciness throughout the day, I sure wouldn't want me back on the job. Not to mention it would a bit odd to be laying down in the office all day.

Then I'll ask Daniela, "Are we good?" You know. We all have our way of asking our spouse or partner if the relationship is healthy with nothing incomplete, but lately I'll ask her when there is really no reason at all to be concerned. She replies and lets me know that we're great and that its just another side effect of the chemotherapy. Both radiation and chemotherapy have "emotional upset" side effects. It's wild to experience them at such random moments. And as a husband and father, its not easy to have Daniela doing everything the household requires. And the fact that she does do so much for me and the kids is a catalyst for my feelings of guilt for not participating in so many aspects of family care. I very much look forward to sharing the household chores with Daniela. It will be nice to actually be a participating member of the family.

Sure I am doing my job right now - that would be HEALING and taking care of myself - but I do look forward to being completely healed and joining the world of fully functioning people. When I woke up this morning, I came downstairs and told Daniela that I can't wait until July 16th. The freedom is close I can taste it!

Thursday, May 29, 2008

Permanent Pain Relief

I just realized I haven't posted anything since Friday. This chemotherapy is definitely getting to my head. The days go by and I barely even realize how much time has passed.

Well, yesterday Daniela and I had a telephone conference regarding my surgery with one of Dr. Cagir's' nursing staff. Ideally, I will be in the hospital for four to seven days, then recovering at home for six weeks. I was very happy to hear that they intend to have me up and walking around the same day or the following day. I thought I would be on my back for quite a while. I asked what "recovery at home" would look like, specifically how long will it be before I am able to sit without pain and the nurse said I shouldn't have any difficulty sitting when I am at home.

I have not been able to sit without relying on pain killers and the aide of a cushion since October. Nor have I been able to walk long distances or stand in place for more than a minute or two without pain since October. With all of that in mind, I am very much looking forward to the surgery. To sit without pain or to be able to walk around the house or the yard and then in the not so distant future around the neighbor hood without pain? That sounds absolutely fantastic.

The freedom to be able to sit, stand or walk as I please? It may seem a bit odd, but that actually sounds pretty exciting to me. To tell you the truth, I can't wait to have that surgery. Yeah, that's very different from what I was saying last year at this time, but I am simply done with all this pain. After eight months of it and everything else that I've been through, I'm ready. Real ready. And in the mean time, I'm hoping the radiation and chemotherapy will have shrunk the tumor - relatively soon - which should also provide me significant pain relief.

Friday, May 23, 2008

Chemo-Brain!

I forgot to mention that those lovely boils of mine are far less sensitive than they were last weekend. In fact the sensitivity is down by about 75%. Yeah, I can actually walk around without having to intentionally be bowlegged! The radiation department has a new doctor (he started on Monday) and when he saw the boils today he said, "This is very uncommon." If I wasn't so out of it with my brain so fuzzy from the chemotherapy, I would have burst out laughing. Leave it up to me to have an uncommon side effect! Regardless, they are drying up and going away and that is a very good thing.

I am also happy to report that the radiation burns are no longer open and raw. They are healing up quite nicely. The skin is still a little red and dry, but red and dry is nothing compared to open and raw.

The chemotherapy isn't being particularly friendly today. Like I mentioned in the first paragraph, I have what is referred to as "chemo-brain." It's difficult to focus and I occasionally forget what I'm saying. I also have little energy and, well, I just don't feel myself. Daniela has encouraged me to not resist it. Just be with it and before I know it, it will be gone. I'll do my best.

Heck, as I find myself at the bottom of this entry, I'm having difficulty remembering what I even started with. I better get out while I can!

Thursday, May 22, 2008

Some Recent Changes

Well, Wednesday's chemotherapy treatment went well. Honestly, I slept through most of it. The pre-meds Dr. Allerton provides his Folfox patients (Folfox is the name of the chemo cocktail I received), includes a medication with a side effect that can make the recipient quite sleepy. And that was fine with me. Dr. Allerton and his staff told me to steer clear of anything cold, i.e., cold drinks or puttimg my hand under cold water from the tap or even touching anything cold from the refrigerator, because it's very common for someone who is receiving Folfox to be painfully sensitive to cold and even just cool temperatures.

Dr. Allerton made the change in my chemotherapy when he reviewed the ultrasound notes and saw that it revealed the cancer had made its way into one of my lymph nodes. He increased my treatment intensity to reduce the chances of recurrence. And because my treatment was changed to Folfox, my sugery date has been changed to July 16th. I am very happy to know that the cancerous tissue will soon be removed from my body. I have been in pain long enough. I am ready for some pain relief once the surgery pain passes.

Monday, May 19, 2008

My LAST Radiation Treatment!

Today was my last radiation treatment!!! The staff were very sweet. A few of the staff hugged me and then the two techs who did most of my treatments gave me a "graduation certificate" signed by all the techs as well as a "survival kit" consisting of eight different items to get me through the rest of my cancer treatment, i.e., "a stick of gum to help me stick to it" and "a chocolate kiss to remind you that you are loved," etc., etc. It was very sweet. I will definitely be back to visit them. Their kindness and generosity meant a lot to me.

But don't think for one second that I'm not still dealing with side effects! In fact, I invite you to laugh at the absurdity. I have what appears to be at least 50 pimples of various sizes - large to tiny - on the inside of my left thigh and about five or six of what appears to be pimples on the inside of my right thigh. Then...oh yeah...then I have what looks and feels like five or six boils on my testicles. Oh yeah - all large and sore. Heck - they hurt even if I look at them. I am really looking forward to completely healing from the radiation treatments so these side effects are gone!

And, really - feel free to laugh. To laugh at the absolute absurdity of it all. How many symptoms could I possibly have in one area of my body??? And it also helps to know that the radiation treatment for rectal cancer is one of the worst when it comes to side effects. A radiation tech told me that the only radiation treatments with worse side effects than those experienced with rectal cancer are the side effects experienced by those who are being treated for cancer in the areas of the face, salivary glands, throat, mouth, etc. So, it makes sense that I would be hit with this slew of side effects.

On Wednesday I go in for a chemotherapy cocktail treatment that supposed to last for three to five hours. I'll be receiving Oxaliplatin, Leucovorin & 5-FU. There's a name for the cocktail but I don't recall what it is. And when everything is complete on Wednesday, I will walk out with a container of 5-FU connected to my port. Then I'll go back in on Friday to have it disconnected. These treatments are done every two weeks. I'll let you know how it goes.

Saturday, May 17, 2008

Coming Back to My Normal Self

I am very happy to let you know the radiation burn around my anus is about 95% healed or at least not "raw" anymore. And the radiation burns on my thighs and around my genitals are about 50% healed. It is absolutely wonderful to be on the mend after all the pain I have experienced.

The radiation equipment was up and running on Friday, so Monday will be my last treatment. As much as I wanted to just get it over with, I noticed on Friday morning when I woke up, I was hoping the equipment would be down so I could have another day off. And of course now that I only have one treatment remaining, I am glad I went on Friday so I can simply be done with it.

I am also no longer having the massively uncomfortable gas and diarrhea that I was blessed with last week. To tell you truth, I feel like I am finally coming back to my normal self. Okay, well there is an odd bunch of small red bumps that have shown up on the inside of my right thigh next to the radiation burn, but I called the Radiation Oncologist on-call this afternoon and he assured me it was just another skin reaction to the treatment. And I will be certain to have the Nurse Practitioner take a look at it when I am there on Monday because if I hadn't had radiation burn there, I wouldn't know WHAT was going on!!!

Thursday, May 15, 2008

Post-Poned Again

The radiation equipment is down again today so my last treatment is scheduled for Monday. And that's of course assuming the machine will be up and running on Friday. As much as I enjoyed just staying home today, it is equally difficult to have this drag out even longer. Oh well. Only two more. Also, the radiation burn and raw skin does seem to be healing a little so it's not as painful as it was earlier in the week.

Wednesday, May 14, 2008

Post-Poned

Today the radiation equipment was down, so my last radiation treatment has been postponed until Friday and that's assuming the equipment is repaired by tomorrow. I had to go to the hospital for a chemotherapy appointment so I stopped into the radiation/oncology department and spoke with one of the techs. She said "Robert, I'm sure you're happy that you're getting a break." Before I could even respond, my friend Jerry who gave me a ride today, looked at her and said, "Actually, he just wants to be done." Jerry is absolutely, 100% correct. Breaks? No. I just want to be finished. And one day is not exactly an eternity. Before I know it, I will be done.

I also met with Dr. Allerton - my chemotherapy doctor. He shot me with a squirt gun as he passed me in the hallway, then caught a few nurses from behind. Dr.Allerton is a lot of fun now that I'm getting to know him. I love the staff in the chemotherapy department. They are very playful and quick to put a smile on our faces. My chemotherapy will start up again next week. It's a different treatment than the last - more of a cocktail. I'll give you the specifics about that tomorrow.

I'm too tired today. Everything must have caught up with me today. Last night I slept from 2 am until 11 am this morning. I got back from the hospital around 4-ish - I think - and then slept until 8 pm. I sure hope I fall asleep at a decent hour tonight. I'll let ya know.

Monday, May 12, 2008

Hallelujah!

Finally a little relief.

The first instance of relief was on Sunday. On Saturday, I dealt with 20 hours of diarrhea because I was attempting to use just enough Imodium A-D without locking myself up for days on end. Well, you can see that my newly attempted Imodium regimen clearly did not work. So, on Sunday when it all started again, my response was very simple. I immediately took two Imodium A-D and my problem was solved. That made Sunday slightly more tolerable.

What really brought me joy and much relief was my visit with the Radiation Nurse Practitioner. As soon as she saw the insides of my thighs, she assured me she had something for it...and boy did she ever! She applied directly to the raw skin an adhesive material called Mepilex Lite. It's a dressing, like a bandage, but it's made of a foam-type material and has it's own adhesive. It gave me instant relief because there was no longer any contact and thus friction between the raw skin on my thighs and genitals.

Then she informed me that I can use Aquaphor on my radiation-burned genitals. The two combined brought my pain down to a two from a seven. Talk about some relief. I think I'm going to make it through this alive after all!!!

Saturday, May 10, 2008

Trying To Find The Correct Balance

I'm not quite certain why I have been writing in code when it comes to my body parts - like my "back side," "front side" or "my business." I guess it's because of the range of people who read this blog. When I am in a group of mixed company, there are certain topics that I avoid or if they are discussed, I refrain from using certain words. I'm starting to think that avoiding certain words is sillier than just saying what's so. I am just going to write what is so and you do with it what you will.

Last week was a struggle - finding the right amount of Imodium A-D to take without blocking myself up. One day last week I took too much and became constipated, so the next day I took something to relieve the constipation and took too much of that. It went like that all week - trying to find the correct balance.

Today the diarrhea started first in the morning. The directions say to take two Imodium A-D after the first loose stool and then one after each subsequent loose stool - not to exceed four in a day. Since the stuff locks me up like Fort Knox, I took one after the first loose stool and then half of one after each subsequent loose stool. It was ineffective. I have had diarrhea all day long - from 5 am until 1 AM. Well, I just took a whole one at 1 AM and I'm really hoping it will take care of the problem.

And here's the worst part about it: I have had flu symptoms - severely aching muscle & joints all day long and all this diarrhea is happening while I have "sunburned" skin covering a 1 1/2 inch radius around my anus and about 40% of that area is bright red and raw. Thank goodness I have a combination of two ointments - one for numbing the area and one for killing bacteria that could enter the open skin.

And if that's not enough, my genitals are now sunburned and getting raw, as is the skin on the insides of my thighs on either side of my genitals. Having diarrhea constantly irritating this open skin provides me with occasional moments of unbelievable stinging. Again, it's a beautiful thing to have numbing ointment because it does work and keeps from feeling the stinging pain most of the time. The other problem is the diarrhea came on so fast that the only way to get to the toilet on time was to lay on the enema table with a pillow - occasionally taking a nap only to wake up to intense diarrhea again.

The last and final piece is the gas. I have gas that as it moves through my intestines feels like something trying to push its way out of my abdomen. After a five to ten seconds of that, the pain goes away. This happens a couple of times in any given hour. This whole thing is absolutely absurd. And I am beyond grateful that I am not nauseous and vomiting all day as well.

Friday, May 9, 2008

In The Throws Of It

Thank you to all of you who have been posting comments and sharing from your experiences or just leaving a note and letting me know you're thinking of me. Right now, it really helps to know that others have been down this road and occasionally have a recommendation or two or just to be thought of or in your prayers. I very much appreciate it. And, I am almost done with the radiation and, as per the radiation/oncology Nurse Practitioner (NP), I am fortunate to have the current side effects only showing up now, towards the end. Apparently, it can start even earlier, so I am grateful they have not.

Today I met with the NP again because my backside is really getting irritated now from the radiation. And...and now, my front side is starting to...well...let's say, starting to get the same kind of "tan" that my backside's been getting. Not to mention that the Jock Itch seems to be getting worse. When I explained this to the NP, I must have given her one heck of a look because she started to laugh and said, "No, you don't have to worry. Nothing else is going to happen down there." To which I quickly thanked her for that reassurance and said, "That would be a whole new level of...well...I don't even know what, but I'm awful happy to hear that!"

She then went on to explain that the irritation was being treated as Jock Itch but in fact, the source of the irritation is the radiation now making its way through the front side of me. And since skin is weakened when radiated, the possibility of a fungal infection aka Jock Itch increases and therefore it is treated as such. And now it has become very clear why I was informed of the possibility of the radiation making me infertile. Because all my "business" is getting radiated. Which again leads me to being quite grateful that the extent of the side effects will be nothing more than a "sunburn" type reaction and the possibility of becoming infertile.

Regarding the possibility of becoming infertile, I did not go to a sperm bank or where ever one would go to insure the possibility of having more children. The first reason is that if we do have any more kids we will adopt. And the second reason is that I do not want to be a part of the creation of another human being, as I did Beau, with a body that is so toxic that cancer has shown up. Had I preserved sperm in order to have more children, it would be toxic. And since Beau was conceived while cancer was growing in my body, Daniela and I will be keeping that boy on a very healthy diet and commit ourselves to his staying healthy in hopes that when the time comes, he will also choose to live a healthy life.

Now I'm no fool - my folks raised me that way and of course once I was old enough to go out into the world and eat lots of junk food I did. And, I eventually put myself on a healthy diet because I grew up with it as a priority, so for me in just made sense. AND LOOK WHAT GOOD IT DID. Just kidding!!! But all kidding aside, we believe it's important that once Beau is old enough to start making his own choices about what kinds of food he eats, that he be very clear that he was conceived while I had undiagnosed cancer growing in my body. We were told by more than one doctor that Beau should have his first colonoscopy 10 years prior to the age I was when I was first diagnosed. That would be age 26 for Beau. What a thing to have to watch out for at such a young age. I certainly hope medical science makes some serious headway in the area of cancer prevention and treatment between now and then.

So, - back to my current side effects - I'm going to spend a lot of time this weekend attempting to heal or at least relieve myself from these side effects. The NP told me that in addition to my current regimen of side effect meds, a sitz bath would be very helpful as well aloe vera applied topically. So, I think I'll do a little reading while I do a sitz bath and then soak in some aloe vera gel. I've been putting off doing that thus far because all I want to do lately is lay down and sleep off all of my discomforts, but since I do not have radiation treatments over the weekend, I hope to have the energy to give my body a little more care in the way of healing.

I have also decided that once I am healed I will find a way to become a supporter of the advancement of medical science in the area of cancer oncology. I don't know to what degree it will be or what it will look like, but I do have that commitment now that I have first hand experience with the nasty side effects of chemotherapy and radiation. And, it's my understanding that I have only received a light dose yet still I am already sufficiently miserable.

I still very much support and believe in Gerson Therapy. Gerson Therapy is extraordinary yet, it takes an equally extraordinary commitment to take it on. And, without question, of those who believe in Gerson Therapy, not all are going to be up for it. I also am a firm believer that the rapid increase in cancer in our country is a result of the poisons in our water, our air and our food - from seed to supermarket - whether we ingest it through eating and breathing or by soaking it into our skin via the countless products we use in and outside of our bodies.

I also understand there are many angles to removing cancer from our lives. Many in the area of prevention and many in the area of treatment. And right now, as I am in the throws of a particularly unpleasant treatment process, I feel compelled to positively impact the greatest number of people in this area of treatment. So, for starters, I will continually be on the look out for new developments in oncology in hopes that there can be a real transformation of what is currently an often very painful and damaging process.

Here are two links to the same article about John Kanzius, who is developing what he hopes will be a side effect free cancer treatment through the use of radio waves and nano particles. You can click on the first link to view it on 60 Minutes via Youtube or you can read the article on the CBS/60 Minutes web page. And I will confess, I only watched the first of the three Youtube clips and I did not read the entire article because I currently don't have the energy to do so. I most certainly will once I'm free of these side effects, but I thought even though I haven't watched or read it all, what I did watch and read was very exciting and figured it's worth taking the risk and handing it over to you un-reviewed. I have a feeling you'll accept.

John Kanzius' story on 60 Minutes via Youtube (the first of three)

John Kanzius' story printed via the CBS News/60 Minutes website

Thursday, May 8, 2008

Side Effects

This morning I was hit with another bout of diarrhea. I am very hesitant about sharing this side effect because it's well...gross. Ya know? Well, the reason I mentioned it is because it was accompanied by cramps that were so painful they were nearly agonizing. Whenever I want instant pain relief, I take 5 mg of liquid morphine because it 's must faster than the 5 mg pill form. Well, this morning when the cramping was at it's worst, I took a 10 mg liquid dose and within about 45 minutes, I was asleep.

Daniela called to let the staff know I would be late to my radiation appointment and they kindly said, once I arrived, they would fit me in as soon as they could. Once we did arrive, my friend Adrienne, went in to let them know I would be in momentarily and asked that I be given a place to lay down. I got in and within a couple of minutes I was laying down on an examination table and soon fell asleep. About a half-an-hour later they gave me my treatment and we were on our way home. My abdomen was very sore then and the soreness has continued all day long.

The pain and side effects I have experienced as of late are worse than any discomforts I experienced while on Gerson Therapy, minus the gall stones I passed last Fall. It feels that way to me because a Gerson detox flare-up is a good thing. It's a clear sign of the body detoxifying and getting healthier. Even the oral Castor Treatments I did on Gerson Therapy - as painful as they were, were a positive sign. But the side effects from chemotherapy and radiation are not signs of progress, but reactions to the poisoning, which can create additional problems and for me this makes it more difficult to deal with.

And each time I have one of these side effects, I remind myself that I do my final radiation treatment on Thursday May 15th. Only five more anxiety filled trips to Sayre, PA and then it's done. The anxiety I experience is a result of my concerns about whether I will make it to a bathroom in time. I have made it to the bathroom every time so far. But you can understand, I'm sure, that I just want to get to my treatment with no accidents because they me lay me face down on the table with my pants down and raise me right up close to their faces and then line me up for the treatment. With the techs that up close and personal with me and my behind, at a time when I am finding it harder and harder to get myself to the bathroom in time, I get a bit anxious. My anxiety may be a bit silly, but regardless it is there for me. And, I keep reminding myself - this too shall pass.

On a positive note, my appetite has slowly been coming back and it is now much easier for me to eat. Once this chemotherapy induced mouth sore is gown, I will be eating plenty and I am very much looking forward to it.

Tuesday, May 6, 2008

Good Times

On Sunday night I was hit hard with new symptoms: diarrhea and unprecedented gas & gas pain. It was incredibly unpleasant, especially since I currently have something comparable to sunburn on my backside. Regardless of how bad it stings to "clean up", obviously it still must be done and with multiple trips to the bathrrom, it started to hurt like the dickens. I had been using an ointment called Calmoseptine - a moisture barrier/skin softener - which did provide me some relief.

So, on Monday when I went to my radiation treatment, I asked that the Nurse Practitioner to have a look and see what could be done to provide me some relief from this "sunburn" issue. She had a look and said the rash on my my behind had now opened up and was getting raw - Nice, huh? She assured me they had some more "tricks up their sleeves." I went to an exam room and was seen by a nurse who provided me with two ointments mixed together - one is a numbing medication and the other is a antibacterial. That definitely helped give me some relief and it still doing a darn good job.

She also had a look at the sore that had developed on the inside of my bottom lip - a result of the 5-FU chemotherapy treatment. She gave me a numbing solution that provided a little relief, but it was the "Magic Mouthwash" - a serious prescription mouth numbing medicine - that provided me the most relief. I only need to put a dab of it on the sore on my lip and I can eat without pain for about 20 minutes. Prior to that I was barely eating and only eating cold foods and not much at that. It just hurt to much.

So after providing me relief for both of my stinging ailments, she examined me further and determined I have Jock Itch - a common fungal infection that really itches and definitely a result of the chemotherapy weakening my immune system. So, there I was with stinging mouth sores, abdominal/gas bloating/pain, a stinging/"sunburned" backside, soreness from the previous nights diarrhea, and then I'm told I have jock itch. Okay. Good times.

Well, Monday night was another bout of diarrhea, the mega-gas/abdominal pain, the stinging "entrance & exit" and now flu symptoms. I was almost ready to give up because it was just knocking me down hard. So on Tuesday, the Nurse Practitioner from the Chemotherapy Department took one look at my mouth and recommended a break from the chemotherapy until my mouth healed. As I sat with her and shared all of my symptoms, I felt like I had been beaten. Emotionally, I was losing my strength. So, to hear that I would get a break from the chemotherapy was music to my ears. Dr. Allerton also found some sores developing under my tongue and ordered the chemotherapy to stop until my radiation treatment was complete. My only concern about stopping the chemotherapy was the idea of the cancer getting a jump and starting to grow again. They both assured me that it was not a big deal and how necessary it was to allow my mouth to heal before it got real bad. The guy next to me in the chemotherapy room had the inside of his entire mouth become essentially one big painful sore. Yeah. He was admitted for 10-days, immediately taken off of 5-FU and given a temporary feeding tube. These mouth sores can definitely be a serious problem.

So, I spent an hour in the chemotherapy room with a Saline IV to rehydrate my system and the knowledge that I was going to be off of chemotherapy for a couple weeks. I had gotten dehydrated because the mouth sore was so bad, it was painful to even drink water. Amazingly, it's only been about 10 hours since I was ordered off of the chemotherapy and my mouth sore is already healing.

****You're not going to believe this. I was just in the bathroom doing a salt, baking soda & water mouth rinse (to treat my mouth sores) and after I was done, I wiped my mouth off with a towel and in doing so, took off the top layer of the sore on my lower lip. Oh yeah. That stung just a wee bit.

On a positive note, I only have seven radiation treatments left. Thursday May 15th is my last day. Remembering that has been a very effective tool in keeping me going. And I'm also happy to say that I have been forgetting to take my morphine for multiple hours at a time and haven't even realized it. I'm thinking the tumor is shrinking from the treatment resulting in less pain. I sure hope so.

Sunday, May 4, 2008

Just Short of Miserable

I believe I have found the source of my pain and thus no longer need to speak to my doctor about it. Last week I was having abdominal cramping and took Imodium A-D, as per one of my radiation nurses. Now that I am no longer taking the stuff, the pain has decreased. I will speak to my doctor about an alternative to Imodium so that I might be able to avoid any additional pain from abdominal cramping.

In the mean time, the chemotherapy administered to me (5-FU) has caused sores on the inside of my bottom lip which seriously limits my ability to eat without pain. Although I have found that cold foods are significantly easier to tolerate. And I will speak to the chemotherapy staff and find out what else might provide me some relief, since I have six more weeks of chemotherapy and certainly can not afford to reduce my caloric intake for that long.

The radiation on the other hand is causing a reaction in the treatment area that feels like a sunburn. So, every time I visit the bathroom, which for me is quite frequent, I must face the sting that results from any type of contact on this "sunburned" area. Essentially, I feel like I kissed a jellyfish then took my pants down and sat on it.

If you have never come into contact with a jellyfish, they sting whatever part of your body they touch (except for the palms of your hands and the bottoms of your feet - which is irrelevant for this conversation).

So, I can say with ease that my level of physical discomfort is just short of miserable. I do have topical treatments to reduce both discomforts, but they only reduce the discomfort - they do not cure it or remove it. Daniela keeps reminding me this is temporary and that does help a little. And I will share my situation with my doctors on Monday and find out if they have any additional remedies for me.

Friday, May 2, 2008

Looking Forward to Surgery

I have definitely been tired lately. It's amazing how it hits me. Either early afternoon or around 7 or 8 pm I am suddenly exhausted and struggle to get upstairs to take a nap. And when it hits me, it hits me hard. I've also noticed that as I spend these recent days so tired, I am less aware of the passing of time and each day seems to be passing so quickly. To be under such a powerful influence as the side effects of my treatment, leaves me feeling incredibly blessed to be home and under the care of my family. I want to be with my loved ones if I am going to be so subtly "out of it."

On another note, it has been brought to my attention on more than one occasion, that I do not clearly convey the amount of pain I am in on a daily basis. That doesn't really surprise me. I'm not particularly interested in filling these posts with complaints about my pain. It never really ends, so if I told you about it in every entry, I'd never stop talking about it. I just assumed I was making it clear.

But since I've now voiced it, I will share with you that I mostly lay down or recline during the day because to sit - even on a soft chair - often causes me too much pain. My Tempurpedic seat cushion provides significant relief on the 50 minute car rides to Guthrie in Sayre, PA or an occasional pain free meal at the kitchen table. And standing for more than a minute or two is beyond tolerable. However, walking works for me as long as it's not for long distances. I'd say I can walk 50 to 100 ft. without a problem. If I walk further than that, I will more than likely run to the restroom as fast as my legs can carry me. Kind of odd that I can walk with ease, but to stand is brutal.

And speaking of the restroom - yeah, I'm about to talk about it - I am having increased pain during my "visits" to the bathroom. I could increase the morphine, but I'm already taking 5 mg every four hours. And I really don't want to take anymore, because I'm tired of being under the influence of it all day as it is. So, I am going to give my surgeon a call on Monday and see what he recommends in hopes that he will offer an alternative to "more morphine." And now that I have made it clear about the pain, I can now say I am so tired of being in pain and really sick of being on morphine.

Yup. I am actually looking forward to surgery. Because I will no longer have a tumor that causes me pain. It has gotten real old. To tell you the truth, I guess I am lucky to be able to look forward to the pain relief. Not everybody has that to look forward to. And as of late, I wish I could go into surgery tomorrow and be done with all of this.