One of the first rules of joining the Wellness Community is that you are not supposed to mention what happened in the group outside the group. And I don't plan on breaking that rule today, just bending it a little. I am bending that rule, because Ann frequently talked about her experiences in her own blog and Ann's attitude helped me through my own cancer fight.
When you first join the Wellness Community, you go to an information meeting that tells you what to expect and what it's all about. There was only one other couple at our meeting and that was Ann and Al Maree. To look at the two of them, you couldn't guess which one was sick. Through some introductions, we learned Ann was the one in the battle with cancer. I am sure they told us more that night, but to be honest I didn't know what was going on in my own life at that time, much less those around me.
When I walked into my first regular group meeting, there sat Ann Maree. We went around the room introducing ourselves, our cancers, and our treatments. I heard this vibrant, energetic, and non-cancer looking person state that she has been battling Stage IV Breast Cancer for years. WHAT?!?! She didn't even look like she had a cold! This may sound odd, but that made me feel really good. No not that she had cancer, but that one can fight such a hard fight and not only survive, but live well while surviving. Suddenly I no longer felt like cancer was this dark tunnel I was struggling to walk through hoping to some day see the light at the end. Ann helped show me that cancer may be part of one's identity, but it doesn't have to be one's only identity.
Ann was fond of saying, "I have cancer, but cancer doesn't have me." She lived that motto to the end. It was her attitude that helped me to push myself when I felt I wasn't ready to be a normal person yet. Most of that pushing resulted in me hurting myself, but that is beside the point. Ann participated in more LiveStrong events than I probably ever will. Ann actually got out and rode her bike as many times as I look over at my dusty bike and think that I should probably get my fat butt on it.
Although I knew Ann was very sick (even though she never seemed to show it) and I knew she was getting sicker, I never thought this day would come. I hate to admit it, but I had slacked on reading her blog daily because once again, she seemed to be beating the odds and getting better. But then Saturday I got the news that she had passed through the network of current and former Wellness Community members. I was expecting an e-mail at anytime for Ann quoting Mark Twain "The report of my death was an exaggeration." All hope was lost when I saw that her husband Al was the one reporting Ann's passing.
I thank God that I met Ann (and Al). When I was thinking all cancer patients were gray, bald, anorexic-looking, hunched over, zombie-like things (and that I was about to become one), Ann showed me that people with a much harder fight than I can look...well...normal. And when I thought cancer would ruin my life, Ann showed me cancer only has as much control over you life as you let it. Hearing Ann's struggles and seeing her fight with such dignity and poise, I knew that with a little Faith I could make it through my much smaller battle.
This week there will be a "Celebration of Life" for Ann, which I am certain Ann gave Al detailed instructions on how it should be carried out. I believe in God and I believe in Heaven, and I certainly believe that no matter how nice life is on Earth, afterlife in Heaven is better, but still it is hard to see someone taken too soon go away. I don't like funerals, because often they don't focus on the gift of getting to know and experience the person in life, they seem to focus on missing them after they have passed on. Ann and Al obviously feel the same way and want to have that celebration of life, not a mourning of death. That being said, I haven't decided yet if I am going this week or not. I would love to go to the event and share what an inspiration both Al and Ann have been for me the past year, but I know ultimately there will be tears and sorrow as well. Conversely, when I last saw Ann (although she was getting sicker) she looked as vibrant and was defiant as ever and I kinda want to seal that as my last memory of her. Regardless of whether I go or not, I am sincerely thankful to God that I got to meet both Ann and Al, and I am a very sad that I will not see Ann again. My heart goes out to Al as he continues Ann's Journey without her.
Showing posts with label Wellness Community. Show all posts
Showing posts with label Wellness Community. Show all posts
Wednesday, July 6, 2011
Monday, May 9, 2011
"If I Leave You It Doesn't Mean I Love You Any Less"
For the second day in a row I am starting off with a Warren Zevon quote. While Warren was dying of mesothelioma he wrote a song to his wife with the line "if I leave you it doesn't mean I love you any less". It was a touching line when I first heard it and a much more powerful line after my cancer diagnosis. I think the first reaction when you are diagnosed, is to wonder if you are going to survive. The second reaction is if you don't survive, what will that do to your family? What a brilliantly simple way of expressing how we feel. If cancer takes us, it doesn't mean that we want to go.
I "graduated" from the Wellness Community this week. I won't say I am 100% over all of this stuff, heck for one thing I haven't officially been released from the urologist yet, but cancer is no longer the prevailing thought in my mind anymore. Granted there are other things going on in my life right now that are taking my focus off that crap, which is a good thing. I don't know if I would feel this far removed from cancer otherwise, but the point is I do and that's all that matters. It's hard to believe my cancerversary is coming up in just a few months!
The Wellness Community and more importantly the people in my support group have been very...well supportive. I was hoping there would be a big crowd there so I could say "bye", but there was only the facilitator and one other guy, who happened to be my favorite guy and the one that helped me the most. This particular guy (without giving any identifying information, which is a no-no for a support group) has lived with cancer for literally decades. Not a survivor, LIVED WITH CANCER as in still has cancer! There is another in my group that has lived with cancer for about a decade as well. Do you know how comforting that is to someone who just got diagnosed? Even if you aren't cured, here is living proof that you can live with cancer and look like a normal non-cancer-having person! And the thing I was most impressed with these two individuals was they were the most upbeat of the group. They weren't cursing their maker or bitter at the world. They were positive. With just my favorite guy in my final meeting, I was able to spend a lot of time telling him just how important he has been to my emotional recovery. I wish there were a couple of others there that I wanted to thank, but that's what e-mail is for.
Now to complain about my group for just one second. One thing I did get off my chest was there was an incredibly negative individual that almost caused me to quit the group. This person was CURED but didn't want to believe it and spent the whole meeting going on about how if you had cancer once it stays in you forever and it can pop up anytime, even if the doctor says you are in remission or even cured. That is not something I wanted to be around just out of my surgery and facing chemotherapy. Luckily, the lady from the No Boobs About It blog warned me that there is one of those people in every group, to just try to ignore them. I am glad she told me that. The only other complaint I have with my group (and people in general) sometimes when life looks the darkest, people give up on you. Most cancer patients have ups and downs in their care, and some people in the group would start referring to people in the past tense that were struggling in their fight. The whole time Monty Python and the Holy Grail was running through my head "I'm not dead yet..." All of the people referred to in the past tense have gotten better! Thank God (literally) that they had better outlooks on their own lives than some of their supporters.
But all in all, I loved the Wellness Community and the support everyone gave me. I didn't really want to leave, but I didn't feel it was right for me to be there anymore, since I feel less and less like a cancer patient and more like a cancer survivor. I wanted to thank everyone for what they did with a gift, however I couldn't just give gifts because I am still unemployed and don't have a lot of money flowing in right now. I would have liked to cook something and bring it in (and let's just pretend for a moment that my cooking is tolerable) but when you are on chemo, you can be super sensitive to tastes and smells (I still won't touch pasta and shun salt, two things I enjoyed before chemo) so food is not even allowed inside the room we meet in. So that left me with my favorite thing, music.
Not only have I worked extensively in music running record stores, as a club DJ, and even with a record company being required to hang out with rock stars for three years, but I have always used music to alter my mood and relate to others. Back in the day, years before I even met my wife (if she is reading this) I would make mix tapes and CD's to open doors to hot girls that would inevitably ask for more CDs and less of me. More recently, I boil my music collection to moods. I have several CDs I put together just to keep me awake on roadtrips. I have CDs I made to listen to just when I want to sing loud in the car with no one around. I have a CD I made to listen to when you are in a pissed off mood (which I largely gathered from my wife's music collection, I don't know what that means, I'm just saying...). And I have made CDs just to put me in a good mood. So that is what I did, I made CDs for my group, happy CDs. You know, songs that are just impossible to be sad while listening to, stuff like LFO's Summer Girls, Spice Girls' Wannabe, and Hanson's MmmBop...OK, I am lying, I like most people over the age of two and with most of their faculties hate those songs. That was just a list of my sister's CD collection. (The funny thing here, is I have to approve all comments before they are posted, so there is no way for her to refute this on my page. But I am sure there will be retribution on hers.) But I did put together a list of twenty songs from 1952 to the mid 1990s that just make you feel good. I don't know if they will appreciate them or not, but even if they don't, at least I gave them a new shiny coaster.
So Thursday, Warren's lyrics held a different meaning to me. I didn't want to leave the friendships, but it was time for me to leave the group. And although I can't specifically identify people or illnesses, I will vaguely take a moment to say some "thank yous". Thank you Bill for showing me how one person can face cancer and act like...well someone that doesn't have cancer. Thank you Susan for having that magic folder where much like a Magic 8 Ball, you ask a question, you reach your hand in, and pull out a print out with the answer. Thank you Ann for showing just how hard one human can fight, and still retain grace and dignity the whole time. Thank you Cary for taking a bad situation and turning it around for something good. And most of all thank you Ned, no doubt your family sacrificed a great deal for the benefit of so many others, and I will never be able to express my gratitude sufficiently. And there are many others at the group that helped me, and I don't mean to play favorites here...but I am (did). And it's not like anyone actually reads these anyway, so there is not really anyone to offend with an omission. Even though I didn't place that Warren Zevon song (Keep Me In Your Heart For A While) on the CD I made, because although very poignant and beautiful it's also incredibly depressing, I graduate from and depart the Wellness Community with those words in my heart and mind, "If I leave you it doesn't mean I love you any less".
I "graduated" from the Wellness Community this week. I won't say I am 100% over all of this stuff, heck for one thing I haven't officially been released from the urologist yet, but cancer is no longer the prevailing thought in my mind anymore. Granted there are other things going on in my life right now that are taking my focus off that crap, which is a good thing. I don't know if I would feel this far removed from cancer otherwise, but the point is I do and that's all that matters. It's hard to believe my cancerversary is coming up in just a few months!
The Wellness Community and more importantly the people in my support group have been very...well supportive. I was hoping there would be a big crowd there so I could say "bye", but there was only the facilitator and one other guy, who happened to be my favorite guy and the one that helped me the most. This particular guy (without giving any identifying information, which is a no-no for a support group) has lived with cancer for literally decades. Not a survivor, LIVED WITH CANCER as in still has cancer! There is another in my group that has lived with cancer for about a decade as well. Do you know how comforting that is to someone who just got diagnosed? Even if you aren't cured, here is living proof that you can live with cancer and look like a normal non-cancer-having person! And the thing I was most impressed with these two individuals was they were the most upbeat of the group. They weren't cursing their maker or bitter at the world. They were positive. With just my favorite guy in my final meeting, I was able to spend a lot of time telling him just how important he has been to my emotional recovery. I wish there were a couple of others there that I wanted to thank, but that's what e-mail is for.
Now to complain about my group for just one second. One thing I did get off my chest was there was an incredibly negative individual that almost caused me to quit the group. This person was CURED but didn't want to believe it and spent the whole meeting going on about how if you had cancer once it stays in you forever and it can pop up anytime, even if the doctor says you are in remission or even cured. That is not something I wanted to be around just out of my surgery and facing chemotherapy. Luckily, the lady from the No Boobs About It blog warned me that there is one of those people in every group, to just try to ignore them. I am glad she told me that. The only other complaint I have with my group (and people in general) sometimes when life looks the darkest, people give up on you. Most cancer patients have ups and downs in their care, and some people in the group would start referring to people in the past tense that were struggling in their fight. The whole time Monty Python and the Holy Grail was running through my head "I'm not dead yet..." All of the people referred to in the past tense have gotten better! Thank God (literally) that they had better outlooks on their own lives than some of their supporters.
But all in all, I loved the Wellness Community and the support everyone gave me. I didn't really want to leave, but I didn't feel it was right for me to be there anymore, since I feel less and less like a cancer patient and more like a cancer survivor. I wanted to thank everyone for what they did with a gift, however I couldn't just give gifts because I am still unemployed and don't have a lot of money flowing in right now. I would have liked to cook something and bring it in (and let's just pretend for a moment that my cooking is tolerable) but when you are on chemo, you can be super sensitive to tastes and smells (I still won't touch pasta and shun salt, two things I enjoyed before chemo) so food is not even allowed inside the room we meet in. So that left me with my favorite thing, music.
Not only have I worked extensively in music running record stores, as a club DJ, and even with a record company being required to hang out with rock stars for three years, but I have always used music to alter my mood and relate to others. Back in the day, years before I even met my wife (if she is reading this) I would make mix tapes and CD's to open doors to hot girls that would inevitably ask for more CDs and less of me. More recently, I boil my music collection to moods. I have several CDs I put together just to keep me awake on roadtrips. I have CDs I made to listen to just when I want to sing loud in the car with no one around. I have a CD I made to listen to when you are in a pissed off mood (which I largely gathered from my wife's music collection, I don't know what that means, I'm just saying...). And I have made CDs just to put me in a good mood. So that is what I did, I made CDs for my group, happy CDs. You know, songs that are just impossible to be sad while listening to, stuff like LFO's Summer Girls, Spice Girls' Wannabe, and Hanson's MmmBop...OK, I am lying, I like most people over the age of two and with most of their faculties hate those songs. That was just a list of my sister's CD collection. (The funny thing here, is I have to approve all comments before they are posted, so there is no way for her to refute this on my page. But I am sure there will be retribution on hers.) But I did put together a list of twenty songs from 1952 to the mid 1990s that just make you feel good. I don't know if they will appreciate them or not, but even if they don't, at least I gave them a new shiny coaster.
So Thursday, Warren's lyrics held a different meaning to me. I didn't want to leave the friendships, but it was time for me to leave the group. And although I can't specifically identify people or illnesses, I will vaguely take a moment to say some "thank yous". Thank you Bill for showing me how one person can face cancer and act like...well someone that doesn't have cancer. Thank you Susan for having that magic folder where much like a Magic 8 Ball, you ask a question, you reach your hand in, and pull out a print out with the answer. Thank you Ann for showing just how hard one human can fight, and still retain grace and dignity the whole time. Thank you Cary for taking a bad situation and turning it around for something good. And most of all thank you Ned, no doubt your family sacrificed a great deal for the benefit of so many others, and I will never be able to express my gratitude sufficiently. And there are many others at the group that helped me, and I don't mean to play favorites here...but I am (did). And it's not like anyone actually reads these anyway, so there is not really anyone to offend with an omission. Even though I didn't place that Warren Zevon song (Keep Me In Your Heart For A While) on the CD I made, because although very poignant and beautiful it's also incredibly depressing, I graduate from and depart the Wellness Community with those words in my heart and mind, "If I leave you it doesn't mean I love you any less".
Friday, January 14, 2011
When Are You "Done" With Cancer?
Today I went to my cancer support group. For the past two weeks the subject has come up on when it is time to "graduate" from the group. The moderator has said, he doesn't foresee ever kicking anyone out, but it has brought about a bigger question within the group. When are you done with cancer?
For all intents and purposes, I want to be "done" with all of this cancer crap. I have completed my surgery and finished my chemotherapy. My oncologist and urologist can throw out statistic after statistic about how low my chances of a recurrence are. And they can site those numbers all day long, but it is difficult to really believe them when they want to test you every three months. I have my first post-chemo scan next week, and I didn't think it would bother me at all, because according to all the people that I give co-pays to I have almost no chance of this cancer ever coming back. But as I get closer to the date, I find myself dwelling more and more on it. I can't imagine what life will be like the week between the scan and getting the results. This is where the comfort of the group came in for me. I learned about "scanxiety". At first I laughed it off as a funny term, but as I get closer to that date, I know exactly what she is talking about.
As far as cancer is concerned, I've had it easy. Many people have much tougher battles, and obviously not everyone makes it through the battle. And then there is the other side. There are people in my group that have been living with cancer eight, ten, and twelve years or more! The thing I found odd today, is that they don't consider themselves "survivors", because they are Stage IV and will always have cancer. These people are a lot more active and look a lot healthier than me! I was floored by their comments. They were given a terminal diagnosis a decade ago, and not only do they continue to kick cancer's butt on a daily basis, but they look good doing it! Heck, I look like crap most of the time and I am considered a survivor! That is probably because I do nothing but sitting around looking for jobs on the internet covered in chocolaty crumbs of whatever that was that I called lunch.
Cancer journeys are so personal in our treatment as well. One of the ten year survivors has never had a chemo treatment. Today we had someone starting their chemo and asking about the dryness that is associated with it. And I (the rookie) was able to give some advice when others couldn't. I think that is the give and take of the group as well. Not only is there a point where the group is relative to you at your point in your journey, but also relative to helping others in their journeys as well. In my opinion, which counts for absolutely nothing, when you no longer are taking anything away for group, nor contributing anything to the group, it's time to leave. In other words, if you are done with everything, and when everyone else is talking about their trials and tribulations and all you can add is how you shared a heroine needle with your STD infected prostitute while nude sunbathing without sunscreen at the equator, that is not only hurting the group, because these are all things you are not supposed to do while being treated for cancer, and you are just rubbing it in.
So, I am torn. On hand, I hope to be free and clear of all of this someday both physically and mentally and never need the group for support again. On the other hand, these are people that I have grown to care about, share with, and in many cases look up to and I don't want to miss out on the weekly talks we have (unless it was the talk about sex and cancer that I apparently missed while I was out, I can miss out on that one). But all joking aside, none of us pay anything to go there. Most of us drive a considerable distance to get there. It is obvious to me that each and every one of us is getting something out of it, or we wouldn't go. Yeah, I do hope I feel like I have "graduated" one day, and maybe I will join the "survivors" group, but I hope the rest of the group is able to come with me.
For all intents and purposes, I want to be "done" with all of this cancer crap. I have completed my surgery and finished my chemotherapy. My oncologist and urologist can throw out statistic after statistic about how low my chances of a recurrence are. And they can site those numbers all day long, but it is difficult to really believe them when they want to test you every three months. I have my first post-chemo scan next week, and I didn't think it would bother me at all, because according to all the people that I give co-pays to I have almost no chance of this cancer ever coming back. But as I get closer to the date, I find myself dwelling more and more on it. I can't imagine what life will be like the week between the scan and getting the results. This is where the comfort of the group came in for me. I learned about "scanxiety". At first I laughed it off as a funny term, but as I get closer to that date, I know exactly what she is talking about.
As far as cancer is concerned, I've had it easy. Many people have much tougher battles, and obviously not everyone makes it through the battle. And then there is the other side. There are people in my group that have been living with cancer eight, ten, and twelve years or more! The thing I found odd today, is that they don't consider themselves "survivors", because they are Stage IV and will always have cancer. These people are a lot more active and look a lot healthier than me! I was floored by their comments. They were given a terminal diagnosis a decade ago, and not only do they continue to kick cancer's butt on a daily basis, but they look good doing it! Heck, I look like crap most of the time and I am considered a survivor! That is probably because I do nothing but sitting around looking for jobs on the internet covered in chocolaty crumbs of whatever that was that I called lunch.
Cancer journeys are so personal in our treatment as well. One of the ten year survivors has never had a chemo treatment. Today we had someone starting their chemo and asking about the dryness that is associated with it. And I (the rookie) was able to give some advice when others couldn't. I think that is the give and take of the group as well. Not only is there a point where the group is relative to you at your point in your journey, but also relative to helping others in their journeys as well. In my opinion, which counts for absolutely nothing, when you no longer are taking anything away for group, nor contributing anything to the group, it's time to leave. In other words, if you are done with everything, and when everyone else is talking about their trials and tribulations and all you can add is how you shared a heroine needle with your STD infected prostitute while nude sunbathing without sunscreen at the equator, that is not only hurting the group, because these are all things you are not supposed to do while being treated for cancer, and you are just rubbing it in.
So, I am torn. On hand, I hope to be free and clear of all of this someday both physically and mentally and never need the group for support again. On the other hand, these are people that I have grown to care about, share with, and in many cases look up to and I don't want to miss out on the weekly talks we have (unless it was the talk about sex and cancer that I apparently missed while I was out, I can miss out on that one). But all joking aside, none of us pay anything to go there. Most of us drive a considerable distance to get there. It is obvious to me that each and every one of us is getting something out of it, or we wouldn't go. Yeah, I do hope I feel like I have "graduated" one day, and maybe I will join the "survivors" group, but I hope the rest of the group is able to come with me.
Saturday, October 30, 2010
Talking About Cancer Can Be Fun?
Chemo is still messing with me. Yesterday I felt great. I actually got out in the real world (briefly) without supervision and wasn't too tired. Today I have been tired all day and yet when I lay down it's hard to sleep.
Yesterday was group meeting. If you don't remember my group post, I will give you the real quick down and dirty. Basically there are two groups, one for cancer patients/survivors and one for loved ones/caretakers. There is no set agenda or leader. There is a therapist in the meeting that starts it, but he stresses he is not there as a therapist (even though they only let therapists do that part of the meeting). I feel especially lucky because our therapist is also a cancer survivor, so everyone in the room is going through or has been through the same thing.
I was kind of torn when they said that cancer fighters and their loved ones don't attend the same meeting. After all, this has been a long tough journey that we have both been on, neither of us by choice. Throughout this its seems we have been side by side, it just doesn't seem right talking about the journey, without the person that has been riding shotgun the whole time. They explain it is so the cancer patient can freely talk about any abuse (such as not receiving an American made Paul Reed Smith guitar with twenty four frets and double cutaways) and the caretakers can freely talk about what a joy it has been to be around me and to cater to my every need (almost, there is still the issue of the PRS guitar). My wife seems to enjoy it. I think she likes making the other caretakers jealous about what a wonderful patient she has.
Yesterday though, we had a real small group. I have enjoyed the groups before, but yesterday was different. It seems in the big group, you always steer the conversation back to cancer. Sometimes it can be a little depressing. But yesterday, with a group of five to seven of us (some came late, some left early) it was more like a normal conversation, with cancer as the common thread we all had. Yes, a lot of what we talked about was cancer, but we talked about everything else in the world. And we laughed. We laughed at our pain. We laughed at our joys. We just seemed to all enjoy a conversation where everyone in the room had the common experiences. One thing about cancer is you may all have the "C" word, but there is the surgery group, the radiation group, the chemotherapy group, the "just watch it" group, and those of us that have had the combinations of treatments. Yesterday, we had all been through chemo (I was the newbie) and we just had a grand ole time complaining about treatment. And everyone got a kick out of me, the chemo one-shot-wonder, going to receive treatment with books. It is hard to concentrate in the chemo room, especially as a first timer, so no one really read books and I was the only one in the room without some sort of electronic device sitting in front of me. As soon as I mentioned I didn't bring an MP3 player or a computer/DVD player, everyone in the room laughed at me. Being the only one at chemo not tethered to some form of electronic entertainment I felt like the only kid on the playground that while everyone else had brand names, I had clothes my mom made. At least I assume that is what that felt like, being a Navy brat on the playground in the 70s and 80s, pretty much anything went at the schools that catered to military kids.
I think yesterday was the first day I didn't look at the clock to see when it was over. OK, that is a slight lie. I am still drinking of ton of fluids from the chemo, so I did look to see if I could hold it until group was over or if I had to get rid of the fluids before then. But our conversations went everywhere. I am not allowed to talk about the conversations. I would make the joke "What happens in group..." but that joke is so overdone at the point, I will just say that it is proper etiquette that we are free to speak in there knowing that the person we are talking about will never hear that we said we are being abused because I still don't have the PRS guitar. Plus if all the non-cancers knew all the cancer secrets, everyone would want cancer. Did you know if you show your tumor at Sizzler, your meal is half off? You are also asked to leave immediately (especially if you are like me and have testicular cancer) so it is best to do it towards the end of the meal. Unfortunately we don't have any Sizzler's here so I can't use that benefit. There are many more cancer secrets, but I have already said too much.
But the one thing that our conversation really reminded me about yesterday, is that we all hate cancer treatment. There are certain tests we all take that we all dread. There are parts of our treatment that we all dread. And every single one of us hates the waits. I had a conversation one day with a gastro-intestinal pre-med student who said that they take turns doing procedures on each other (endoscopes, barium X-rays, etc.) so that they not only know how to do the procedure, but that they know what the patients are experiencing as well. I think that spoiled me. More than likely, your oncologist is not going to know exactly what it is like to be in your shoes. They can tell you what they have heard or read about chemo, or radiation, or even the surgeries, but they probably don't know. And that is where getting together with others and talking about your experiences, and knowing you aren't the only one, really helps.
So now I am left with a myriad of emotions. Part of me kind of wishes the groups are always that small, because I really enjoyed yesterday. On the other hand, although some of my favorite people from group were there, there was at least one missing. I used to think I may not go anymore after I am given the all clear. One of my favorites (that was missing yesterday) has been coming for years after he was given the all clear. And after yesterday, I think I understand why. So, I will wait for next Thursday, where I can commiserate with other cancer patients that don't have American made PRS guitars, and find out where else we can get dining discounts.
Yesterday was group meeting. If you don't remember my group post, I will give you the real quick down and dirty. Basically there are two groups, one for cancer patients/survivors and one for loved ones/caretakers. There is no set agenda or leader. There is a therapist in the meeting that starts it, but he stresses he is not there as a therapist (even though they only let therapists do that part of the meeting). I feel especially lucky because our therapist is also a cancer survivor, so everyone in the room is going through or has been through the same thing.
I was kind of torn when they said that cancer fighters and their loved ones don't attend the same meeting. After all, this has been a long tough journey that we have both been on, neither of us by choice. Throughout this its seems we have been side by side, it just doesn't seem right talking about the journey, without the person that has been riding shotgun the whole time. They explain it is so the cancer patient can freely talk about any abuse (such as not receiving an American made Paul Reed Smith guitar with twenty four frets and double cutaways) and the caretakers can freely talk about what a joy it has been to be around me and to cater to my every need (almost, there is still the issue of the PRS guitar). My wife seems to enjoy it. I think she likes making the other caretakers jealous about what a wonderful patient she has.
Yesterday though, we had a real small group. I have enjoyed the groups before, but yesterday was different. It seems in the big group, you always steer the conversation back to cancer. Sometimes it can be a little depressing. But yesterday, with a group of five to seven of us (some came late, some left early) it was more like a normal conversation, with cancer as the common thread we all had. Yes, a lot of what we talked about was cancer, but we talked about everything else in the world. And we laughed. We laughed at our pain. We laughed at our joys. We just seemed to all enjoy a conversation where everyone in the room had the common experiences. One thing about cancer is you may all have the "C" word, but there is the surgery group, the radiation group, the chemotherapy group, the "just watch it" group, and those of us that have had the combinations of treatments. Yesterday, we had all been through chemo (I was the newbie) and we just had a grand ole time complaining about treatment. And everyone got a kick out of me, the chemo one-shot-wonder, going to receive treatment with books. It is hard to concentrate in the chemo room, especially as a first timer, so no one really read books and I was the only one in the room without some sort of electronic device sitting in front of me. As soon as I mentioned I didn't bring an MP3 player or a computer/DVD player, everyone in the room laughed at me. Being the only one at chemo not tethered to some form of electronic entertainment I felt like the only kid on the playground that while everyone else had brand names, I had clothes my mom made. At least I assume that is what that felt like, being a Navy brat on the playground in the 70s and 80s, pretty much anything went at the schools that catered to military kids.
I think yesterday was the first day I didn't look at the clock to see when it was over. OK, that is a slight lie. I am still drinking of ton of fluids from the chemo, so I did look to see if I could hold it until group was over or if I had to get rid of the fluids before then. But our conversations went everywhere. I am not allowed to talk about the conversations. I would make the joke "What happens in group..." but that joke is so overdone at the point, I will just say that it is proper etiquette that we are free to speak in there knowing that the person we are talking about will never hear that we said we are being abused because I still don't have the PRS guitar. Plus if all the non-cancers knew all the cancer secrets, everyone would want cancer. Did you know if you show your tumor at Sizzler, your meal is half off? You are also asked to leave immediately (especially if you are like me and have testicular cancer) so it is best to do it towards the end of the meal. Unfortunately we don't have any Sizzler's here so I can't use that benefit. There are many more cancer secrets, but I have already said too much.
But the one thing that our conversation really reminded me about yesterday, is that we all hate cancer treatment. There are certain tests we all take that we all dread. There are parts of our treatment that we all dread. And every single one of us hates the waits. I had a conversation one day with a gastro-intestinal pre-med student who said that they take turns doing procedures on each other (endoscopes, barium X-rays, etc.) so that they not only know how to do the procedure, but that they know what the patients are experiencing as well. I think that spoiled me. More than likely, your oncologist is not going to know exactly what it is like to be in your shoes. They can tell you what they have heard or read about chemo, or radiation, or even the surgeries, but they probably don't know. And that is where getting together with others and talking about your experiences, and knowing you aren't the only one, really helps.
So now I am left with a myriad of emotions. Part of me kind of wishes the groups are always that small, because I really enjoyed yesterday. On the other hand, although some of my favorite people from group were there, there was at least one missing. I used to think I may not go anymore after I am given the all clear. One of my favorites (that was missing yesterday) has been coming for years after he was given the all clear. And after yesterday, I think I understand why. So, I will wait for next Thursday, where I can commiserate with other cancer patients that don't have American made PRS guitars, and find out where else we can get dining discounts.
Wednesday, September 29, 2010
So in a continuation of yesterday's "good day" status, I started my "Farewell Tour". It's not that I plan on dying or never seeing people again, it more like a rock star's farewell tour when they "retire" and they are back again a month later. Since it is a good idea for me to sequester myself during my chemo treatment, I went around to some friends yesterday checking in. It was good. There were many people I hadn't seen since before my surgery. In fact, yesterday was the first day I had driven by myself in three weeks! And as far as I know, I didn't run over anyone.
A friend of mine lost his wife to cancer about a decade ago. During her battles she became a very strong advocate for the mental welfare of all those affected by cancer. She worked so tirelessly at this she has a facility named in her honor at the Wellness Community. My friend, her husband, urged me to give it a try. For the past few weeks I had planned to go to one of the meetings, and never actually made it to one. My wife said she would go with me. I said, I didn't need her to go, but she was welcome to come. She would never say she wanted to come, but she wouldn't exactly let me go by myself. So we head over last night for the Newcomers meeting. I don't even know why I am going or what I expect to get out of it. All I know is my friend who lost his wife said it would help us to go. The creator of NoBoobsAboutIt.com, who has also been very supportive and helpful, urged me that those things would be beneficial to us as well.
Since I have never been to one of these I am basically expecting all of us to sit around in a circle in a very sterile looking room and go around one by one like a 12-step program. "Hi, I'm Tom and I got my nut cut off three weeks ago." Everyone in a monotone voice, "Hi, Tom". But, that isn't what it was like at all. It was a very nice room, with very cushy chairs and back pillows that make it impossible to sit up straight. We just randomly pick two chairs and realize we are sitting underneath a painting that my friend had painted of his dearly departed wife. That was almost too much for me. It was like my friend's wife was looking over us, guiding us. The meeting starts. Only one other couple shows up so we are motioned to the couch, which is also a little difficult to find a comfortable position. The therapist, who assures us he is not acting as a therapist for the purposes of this meeting, goes over the programs at the facility and we take a tour. We come back to our little circle and someone mentions how some people view a connection between the emotional state and where your cancer happens. As an example she talks about one person who said they felt like their marriage "strangling" her and turned out she had tumors on either side of her neck. In the room are a testicular cancer patient, a breast cancer patient, and two colon cancer survivors. I don't hear much of the rest of what she was saying, because I am using that theory to try to figure out who is causing us a pain in the ass, balls, and boobs. I would explore this theory in more depth later on the way home and how best to avoid cancer to my remaining gentleman's bits, with my wife rejecting each suggested "treatment" I came up with. I guess she just doesn't care about medical research.
Back to the meeting, we later break out for a one on one meeting with the currently non-therapying therapist. I sit down at a big table in another uncomfortable chair. What is it with this place? Then I realize, I may not be the chair, it may be the giant gash at my waistline that is keeping me from getting comfortable. I try some reclining Tai-Chi and yoga so I can get into a position where I can focus on what he's saying. He asked how I heard of the place, and I mention a nurse told us to go as well as my friend and I say my friend's name. He looks at me with a blank stare and admits he doesn't know who that is. During the tour, I noticed that my friend and/or his wife's name is literally on just about every wall in the place. I explain that my friend is the guy mentioned there, and there, and there, and he painted that, and that, and his wife is mentioned there, and there, and there...OK, I didn't say it quite like that, but I did point out his relationship to the building's name. The therapist is very surprised and asked me to tell him that he said hello even though he knows he won't know who he is but he wants me to tell him he says hello anyway. That moment almost made me bust out laughing. Although, my friend is very supportive to those with cancer and supports the mission in every way he can, I don't think he has any power whatsoever on the daily hirings and firings of the facility. We start talking about what we will get out of the official group meetings. I mention that I feel like as a Stage I guy, I am afraid the Stage IV people will look down on my and try to beat me up at lunch. He assures me they won't, but I am still a little afraid, although watching a bunch of chemo patients rumble would probably be the least exciting fight ever. He sees my "It's all fun and games until someone loses a nut" shirt (yes I found one!) and he says that is a good attitude to have. I tell him about some of the other shirts I have been wearing lately, including the one that looks like a pack of Camel cigarettes except in the place of "Camel" is "Cancer" with "Genuine Fate" replacing "Genuine Taste". He laughs, and quickly stops and gets in to therapist mode even though he isn't a therapist at this point in time. He explains that although he is not allowed to give advice, he would really appreciate it if I would not wear that particular shirt to the facility, as not all the participants would appreciate that type of humor. We schedule me into a group and I have my wife come in.
She comes out of her meeting and it looks like she has been crying. Part of me is glad, I feel like she has been bottling in a lot of this stuff, so I am thankful that the non-therapying therapist was able to let her get that off her chest. Another part of me feels like my heart is ripped out, because more than likely I am the reason for those tears. Another reason that if I ever find cancer's ass, I am going to kick it. I restrain myself from kicking to two colon cancer people. After all they are colon cancer survivors, so they don't possess cancer's ass anymore, no sense in kicking them. She comes out and the anti-therapist apologizes for taking so long to my cancer support babysitter, something he also did for me. I wonder if he were an actually therapizing if he would have tapped his watch and said "session's up"? I don't care, I feel a little better. And my wife seems to feel really good about her meeting and her scheduled group too. We weren't real sure why we were going, but we both seem really glad we went.
We celebrate with a night of fine dining at what a friend calls the WC Steakhouse. No, sliders, just chicken rings and cheese sticks. Yes, its a big bag of crappy, greasy goodness, but after today, White Castle never tasted so good. I don't know what to expect at my first cancer patient's meeting tomorrow, I just know I am going and I can't wear a certain shirt.
-------------------------------------------------
And one footnote. Since I have been e-mailing back and forth to my NoBoobsAboutIt.com buddy, I have always been going to her site from our correspondences. I went to Yahoo search it to make sure I put her site name on here correctly. Instead of a breast cancer site being amongst the results I saw Boobs for Troops. Yes it is exactly what it sounds like. My wife asked if they were covered or uncovered, and I told her some were wearing red, white, and blue pasties. At least our troops know what they are fighting for! God Bless America!!!
A friend of mine lost his wife to cancer about a decade ago. During her battles she became a very strong advocate for the mental welfare of all those affected by cancer. She worked so tirelessly at this she has a facility named in her honor at the Wellness Community. My friend, her husband, urged me to give it a try. For the past few weeks I had planned to go to one of the meetings, and never actually made it to one. My wife said she would go with me. I said, I didn't need her to go, but she was welcome to come. She would never say she wanted to come, but she wouldn't exactly let me go by myself. So we head over last night for the Newcomers meeting. I don't even know why I am going or what I expect to get out of it. All I know is my friend who lost his wife said it would help us to go. The creator of NoBoobsAboutIt.com, who has also been very supportive and helpful, urged me that those things would be beneficial to us as well.
Since I have never been to one of these I am basically expecting all of us to sit around in a circle in a very sterile looking room and go around one by one like a 12-step program. "Hi, I'm Tom and I got my nut cut off three weeks ago." Everyone in a monotone voice, "Hi, Tom". But, that isn't what it was like at all. It was a very nice room, with very cushy chairs and back pillows that make it impossible to sit up straight. We just randomly pick two chairs and realize we are sitting underneath a painting that my friend had painted of his dearly departed wife. That was almost too much for me. It was like my friend's wife was looking over us, guiding us. The meeting starts. Only one other couple shows up so we are motioned to the couch, which is also a little difficult to find a comfortable position. The therapist, who assures us he is not acting as a therapist for the purposes of this meeting, goes over the programs at the facility and we take a tour. We come back to our little circle and someone mentions how some people view a connection between the emotional state and where your cancer happens. As an example she talks about one person who said they felt like their marriage "strangling" her and turned out she had tumors on either side of her neck. In the room are a testicular cancer patient, a breast cancer patient, and two colon cancer survivors. I don't hear much of the rest of what she was saying, because I am using that theory to try to figure out who is causing us a pain in the ass, balls, and boobs. I would explore this theory in more depth later on the way home and how best to avoid cancer to my remaining gentleman's bits, with my wife rejecting each suggested "treatment" I came up with. I guess she just doesn't care about medical research.
Back to the meeting, we later break out for a one on one meeting with the currently non-therapying therapist. I sit down at a big table in another uncomfortable chair. What is it with this place? Then I realize, I may not be the chair, it may be the giant gash at my waistline that is keeping me from getting comfortable. I try some reclining Tai-Chi and yoga so I can get into a position where I can focus on what he's saying. He asked how I heard of the place, and I mention a nurse told us to go as well as my friend and I say my friend's name. He looks at me with a blank stare and admits he doesn't know who that is. During the tour, I noticed that my friend and/or his wife's name is literally on just about every wall in the place. I explain that my friend is the guy mentioned there, and there, and there, and he painted that, and that, and his wife is mentioned there, and there, and there...OK, I didn't say it quite like that, but I did point out his relationship to the building's name. The therapist is very surprised and asked me to tell him that he said hello even though he knows he won't know who he is but he wants me to tell him he says hello anyway. That moment almost made me bust out laughing. Although, my friend is very supportive to those with cancer and supports the mission in every way he can, I don't think he has any power whatsoever on the daily hirings and firings of the facility. We start talking about what we will get out of the official group meetings. I mention that I feel like as a Stage I guy, I am afraid the Stage IV people will look down on my and try to beat me up at lunch. He assures me they won't, but I am still a little afraid, although watching a bunch of chemo patients rumble would probably be the least exciting fight ever. He sees my "It's all fun and games until someone loses a nut" shirt (yes I found one!) and he says that is a good attitude to have. I tell him about some of the other shirts I have been wearing lately, including the one that looks like a pack of Camel cigarettes except in the place of "Camel" is "Cancer" with "Genuine Fate" replacing "Genuine Taste". He laughs, and quickly stops and gets in to therapist mode even though he isn't a therapist at this point in time. He explains that although he is not allowed to give advice, he would really appreciate it if I would not wear that particular shirt to the facility, as not all the participants would appreciate that type of humor. We schedule me into a group and I have my wife come in.
She comes out of her meeting and it looks like she has been crying. Part of me is glad, I feel like she has been bottling in a lot of this stuff, so I am thankful that the non-therapying therapist was able to let her get that off her chest. Another part of me feels like my heart is ripped out, because more than likely I am the reason for those tears. Another reason that if I ever find cancer's ass, I am going to kick it. I restrain myself from kicking to two colon cancer people. After all they are colon cancer survivors, so they don't possess cancer's ass anymore, no sense in kicking them. She comes out and the anti-therapist apologizes for taking so long to my cancer support babysitter, something he also did for me. I wonder if he were an actually therapizing if he would have tapped his watch and said "session's up"? I don't care, I feel a little better. And my wife seems to feel really good about her meeting and her scheduled group too. We weren't real sure why we were going, but we both seem really glad we went.
We celebrate with a night of fine dining at what a friend calls the WC Steakhouse. No, sliders, just chicken rings and cheese sticks. Yes, its a big bag of crappy, greasy goodness, but after today, White Castle never tasted so good. I don't know what to expect at my first cancer patient's meeting tomorrow, I just know I am going and I can't wear a certain shirt.
-------------------------------------------------
And one footnote. Since I have been e-mailing back and forth to my NoBoobsAboutIt.com buddy, I have always been going to her site from our correspondences. I went to Yahoo search it to make sure I put her site name on here correctly. Instead of a breast cancer site being amongst the results I saw Boobs for Troops. Yes it is exactly what it sounds like. My wife asked if they were covered or uncovered, and I told her some were wearing red, white, and blue pasties. At least our troops know what they are fighting for! God Bless America!!!
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