Just began PCI

[Mandorg]

Just found this site and am almost afraid to become involved. I think that I have been trying to live in denial to some extent. But not an hour goes by where I am not aware of what I have gone through and continue to face. I was diagnosed with limited stage SCLC in August, 2004, completed chemo and radiation and showed no evidence of cancer on latest scan. Started PCI last week. It's been really difficult to have the PCI. When the cancer was present and I was receiving radiation to the chest (cancer primarily in lymph nodes), it was relatively easy to accept the treatment as an effort to battle the cancer cells that I knew were present. The PCI, however, has been a completely different experience. It feels invasive and frightening. I am working on finding a visualization to help me through the process, but this has been difficult because the physical sensation of the treatments has been very unexpected. I really should be grateful that, so far, I have had no adverse side effects from the treatments. Part of my fear of becoming involved in any support groups has been that I am afraid to hear the possible bad times that could be ahead for me or to hear what side effects I may have to face, but it has been difficult to approach this feeling no connection to anyone else. I'm really beginning to wonder, though, what this experience has been like for others and how they have been able to cope with it, including the constant fear of what the future might bring.

Mark L. Milanich

Diagnosed with SCLC in 8/2004, age 42

[finster]

Mark,

Welcome to the board we all wish we didn't need! I think you put into words so well why I spent so long lurking on the board without actually introducing myself. I just want to wish you the best of luck in beating this disease and keeping it out of your life. Take care and keep us posted.

[Justakid]

Hi there Mark!

I understand your feelings about the support group. I joined when I hit rock bottom during my treatment and there was no where else to go. I was ready to give up and die. Everyone pulled me out of my hole. Took me a while to start to read some of the posts, initially I posted for help but then I realized that everyone is different.

My treatments were horrible and I had every problem there was with side affects, etc. Everyone here pulled me through telling me I could do it and it would get better. It appears that after only a 4mth break mine has returned with a vengance (I have NSCLC).

Anyway my point, come here when you need help, when you are able to give help great, if not, just post and get the support you need.

Most of the time it's hard for me to read the "signature lines" and see what is happening to others, now I'm one of those signature lines that I tried to avoid from the beginning.

Just remember....good days and bad days. We're here to listen!

[Ry]

Welcome Mark...

Come whenever you need us...lurking is allowed too.

SDianneB posted on her PCI daily and she did very well with the treatments. So I would suggest you search those posts and they will help you understand what you're in for. I hope things go as well for you as they did for her.

Maybe she will check in here and give you some encourgagement.

Good Luck!!!

[Frank Lamb]

Hi Mark, Welcome to our support family.You will find lots of knowing and caring people here.There are quite a few folks here that have been where you are at now,& seemed to handle everything well.

As for what the future holds I can't say.In my own instance I try to make the most of each day.

Wishing you the best with your treatments and please keep us informed.

[stand4hope]

Hi Mark and WELCOME!

I'm glad you're here, but I'm not glad you're here - if you know what I mean. While it's never a good thing to have cancer, I'm glad your SCLC is at least limited.

I, too, lurked for a while - maybe only a matter of weeks, but I was a big chicken to post because I had never done anything like this before. Everyone here has become my extended family.

I'm sorry I can't give you any tips on the PCI. My husband has NSCLC and he had WBR, but did well with it.

Hope to see you here often. Keep us updated as you go along.

God bless you,

Peggy

[Mouse]

Welcome, Mark! To the place nobody wants to be! We were diagnosed about the same time. My cancer has been "stable" since December. I am having a Scan in two weeks and am hoping and praying it will still be stable. Yes, I am older, but I still want to live some more! My SCLC is extensive, so my chances are less. God will get me through! Make prayer a part of your treatment! It sure helps! Love, Marge

[daggiesmom]

Although I didn't have PCI after my chemo and radiation, I too was diagnosed with LSClC. So far, so good 36 months on 4/4. Please don't give up hope. That is so important. I can only imagine that PCI is scary. But you're strong. You'll make it. Other people on this board have gone thru this and came out ok. YOU WILL TOO. Please let us know how you're doing, ok? You're young and strong. Welcome and good luck. (Go into the SCLC archives and read. You'll be surprised how well others have done.

Joanie

[Mandorg]

Thanks to all of you for your replies. It really is good (for the most part) to hear from others who are going through a similar battle. It touches me on an emotional level I perhaps have not really been willing to get too close to, but I think that it is important that I begin to get in touch with these feelings and that I begin to understand a sense of connection and empathy with others. I tend to live in my head, analyzing situations and using logic to determine action.

With respect to the PCI, when I was diagnosed and the radiation oncologist was going over the treatment options and recommendations, he talked about doing the PCI a couple months after the end of the initial treatments (28 days of radiation to the mediastinum and 4 rounds of chemo). My symptoms began in mid-April of last year, headaches, fevers, pain in various areas... First diagnosis was eye strain and that I should get new glasses! By early July, after numerous blood tests and about 10 different medicinal prescriptions, my doctor had finally "decided" on a diagnosis of fibromyalgia and associated depression. Luckily, I did not agree with her. I found another doctor and within two weeks was scheduled for the mediastenoscopy which would lead to the proper diagnosis of SCLC primarily in the lymph nodes (at first, the surgeon who did the mediastenoscopy was fairly sure that it was lymphoma, so the final diagnosis was a bit of a shock).

The reason I went into this was to say that at the time of the diagnosis, I had spent 4 months in pain, running fevers, losing weight (35 pounds), not sleeping, etc., etc. so that when the oncologists gave their recommendations, I was ready for anything. I was basically saying to throw the kitchen sink at me and I'll take it. The radiation to the chest area occurred in conjunction with the chemo treatments, so all the sickness, weakness, hair loss, etc. was just one big battle that I knew was a part of the process to rid myself of the cancer that we knew was there. During the radiation treatments to the chest, I used a visualization to help me deal with the process. I really felt no physical sensation other than a distinctly unpleasant odor during the actual radiation.

Jump to late December, I'm finally starting to feel better, going back to work, traveling to visit family for Christmas, over a bad case of radiation pneumonitis, I've got hair again, I feel strong enough emotionally to set my quit smoking date one week before Christmas (I'll get to the smoking...) and now the prospect of having my brain irradiated is not looking too appealing. It seems trivial and stupid, but I was even upset about losing my hair again. It had just started coming back again, and now the treatments would take it away again. In the grand scheme of things it seems pretty petty, but it was important. I worried, and I still do, about any long term effects that may develop. The loss of any "cognitive ability" is frightening, but the alternative is unthinkable. My wife and I went over statistics (not always a good thing to do) and came to the quick realization that going through with the PCI was clearly the smart thing to do. I knew the choice I would have to make. I knew that the fear of the treatment had to be dealt with, and that meant that I also had to deal with some of the fear associated with the cancer. The prospect of the cancer metastasizing in the brain had to be dealt with on an emotional level and on a real basis so that the fear of the treatment could be put into perspective. It was just a matter now of building up the nerve to call the oncologist and say "okay, let's go". Obviously, I did that and have begun the treatments. A total of 20 treatments.

The first PCI treatment was very disconcerting for me because it was so different from the treatments to the chest area. I mentioned above that there was a distinct odor to the radiation, well now the odor was much stronger and I could feel a tingling sensation in my nasal cavities, along with a flashing of blue light and a general sense of invasiveness that was not present in the radiation to the chest. I had worked on setting myself up a visualization of the radiation creating a "barrier" to protect me, but the invasive sensation of the treatment has made me alter that visualization. I'm still working on it, but I'm visualizing the brain becoming "tough" and repellant from the treatments. I don't know if the methodology for treatment would be the same for you and I don't know off-hand the dosage, but it is pretty "creepy" (sorry, it's the best word I can come up with right now). They created a "mask" of my face using plastic mesh which keeps my head immobile during treatments. They've told me that I can keep the mask afterwards, so I'm thinking of make a "chia-Mark" out of it later. I guess the point is that it is creepy, invasive, intimidating, frightening, unexpected, and everything, but the alternative remains unthinkable. The alternative is to not fight. The alternative I've tried.

I lived the alternative for 25 years figuring that I was immune, that I would not be in that small percentage that developed cancer from smoking. My grandmother lived into her 70's smoking and had no smoking related health issues. I no longer feel immune. I feel vulnerable and frightened. It's certainly to be expected. But that doesn't make it any easier. I guess the PCI is a way that I can feel that I am continuing to fight. To get stronger. To be less vulnerable.

I am also continuing to fight the battle against smoking. I officially quit on December 18, 2004. But since that time, I have probably smoked about 30 to 35 cigarettes. My wife is not aware of how many I have had. I have been through the shame and self-pity routine on this so many times I've lost track. I have certainly gone periods without any. I went over two weeks without a single cigarette in January, but it has been a back and forth battle. To deal with the additional stress added because of the cancer, the hospital costs, the lifestyle changes, the loss of things I haven't even mentioned, and this is the time when I am trying to give up smoking, which for 25 years has been my most "successful" stress reduction technique. I have always used smoking as a way to stop and center myself. It's been sort of my "touchstone" and now it shows itself in reality to be the enemy. I'm still working on it... One of my biggest issues is that I have put on too much weight. Strange, after losing almost 40 pounds from the cancer last year, I'm now worried about putting on too much weight. But I am.

Frankly, I'm scared. I'm scared that I don't have what it takes to fight this, because what it really takes, what makes the fight worth fighting and what brings you through to the other side is the true and honest desire to live and the knowledge that you deserve it. The true belief that the life you have chosen, the life you will lead from now on, the life that you are fighting for is a life worth living and a life that has meaning and true value. It's always been the battle, to live a life of real value. But now perspective forces us to understand what is valuable to each of us as we fight against the cancer that threatens to take that away. I'm still working on it...

For me, there is a place in Utah. It is a desert canyon named "Dark Canyon". (I"ve posted a couple photos on my website at www.earthlyicons.com/darkcan.html - this is not a plug for my website, only to share the photos of the canyon). In 2001, I went there alone on a backpacking trip. It was my dream trip. I was going to hike the canyon for 18 days alone, and it was going to change my life -- sort of a spirit quest or vision quest. I prepared for months, getting the best equipment, reading all I could on backpacking and camping. At the same time, my wife was heading to Spain to walk the "Camino" -- an ancient 500 mile pilgrimage across the French and Spanish countryside. We were to be living out our dreams and to come out with a full vision of who we were and what our lives were to be. That was the intent, although we downplayed it when we talked about it to others, not wanting to be seen as naive or overly idealistic -- still, there was that feeling inside that we "knew" that this was our chance, that this would be the great event in our lives to change us forever and put each of us on the path to our "true meaning". On the way down to the bottom of the canyon I sprained my ankle. I wrapped it and continued. The next day, the thunderstorms in the mountains to the north a couple days earlier finally showed themselves by turning the clear blue water in the stream into a muddy chocolate milk consistency. Three days into the trip, my water filter clogged and I could no longer get clean water to drink. Despondent, limping and thirsty, I turned around and walked out. I felt that I had failed. I think that I still feel that way. My goal is to get back there and complete what I began. It may not mean anything in the grand scheme of things. It may not be the vision quest I wanted it to be. It may simply be 18 lonely days trudging along with 40 pounds on my back in a beautiful desert oasis. But it has become my white whale. And for that, I will fight. It helps to drive me. It is one of the myriad of dreams that I want to pursue in my life. And at times such as this we must cling to each of our dreams and pull ourselves forward toward them with all the strength we can muster. Each of them, no matter how silly or seemingly unreal, has value and has the potential to be that one thing that finally pulls us through to the other side.

I've written more than I intended. Something of a catharsis I suppose. I think that I need to feel this on a personal level that I have not allowed myself to really embrace yet. The fear can be so overwhelming. The dreams can feel so out of reach. But if I don't live with a willingness to embrace that part of myself that holds onto those dreams, then I don't think I'll survive. I truly believe that the cancer was a "wake-up" call. Now I just have to learn how to really live. And I have to believe that it is possible and that I deserve it. I'm still working on it...

Mark L. Milanich

Diagnosed with limited stage SCLC in 8/2004, age 42

Radiation (28 treatments) and chemo (4 sessions) completed 10/2004

CT Scan showed NED 12/2004

Began PCI 2/23/2005 (20 treatments)

[Cindy RN]

I too, am glad you found this site! I have been fighting this disease now for 4 yrs. Mine is extensive thou. I have had 1 relapse but on the whole have done well.

I have gone back to work-kinda-I am teaching-not working in a hospital, it was too stenuous for me.

I opted not to do the PCI, there are several on here who have had it and I am sure they can be a great resource for you.

Where is McHenry?? I am in south-eastern IL.

Cindy

[cindi o'h]

Hi Mark.

welcome.

this is an illness that most will do better with the help of some friends. No need to feel alone and isolated. We understand your fears and your dreams and your losses. We have had them too. We get it.

Glad to have you post. I am hoping to see you regularly. Sounds like you will do well. I am two years out from a late stage nsclc. I didn't have the PCI, so I don't have that experience. But, there are many who have had it among our little group who I am sure will chime in here and give you some of their wisdom.

All the best for all of your dreams to come true!

cindi o'h

[deruo]

Hi Mark,

Can't really add anything to whats been said already, but am glad that you decided to de-lurk and share.

Theres a wonderful group of supportive people here. I look forward to hearing more from you.

I'm a caregiver, so I can only imagine how scary the whole thing is for you, however, you are young (same age as me) and limited stage.

My mom had PCI as well as she decided to pull out all the stops in fighting. She's doing very well and amazing all her doctors with how well she's tolerated everything. Everyone is different of course, but it can be done!

Hang in there and visit when you need!

d.

[Summer]

I believe that wanting to fight this disease with everything we have and having goals, dreams, to work towards help us in our battle. You seem to have both going for you, and it is good that the cancer was caught in limited stage.

Perhaps there was a reason why your dream trip initially did not turn out the way you thought it would. I don't see that you failed; perhaps then was not the time for it, and perhaps this is the better time, with the knowledge you now have.

I'm glad you've joined this group, I myself have joined only recently,

and am grateful to the many wonderful people here that share their experience, strength and hope. My partner was diagnosed at an extensive stage and presented with a poor prognosis, nevertheless, the statistics are the middle numbers and there are long term survivors. Each case is very individual as I've been told often. Best of luck to you!

[chloesmom]

Mark,

Thank you for sharing your thoughts and experiences with us. I hope you find the people on this board as comforting and enlightening as I have.

Just wanted to say I totally understand your discomfort with the new lifestyle that battling cancer has forced you to adopt. I felt the same way, and still do sometimes, even though I'm not in any active treatment.

Treatment is also scary, but I felt the good thing about treatment was the feeling that I was actively fighting this beast in my body.

I don't know if counseling is something you would feel could help, but I decided early on I couldn't handle all this alone and saw a counselor for about the first year on a regular basis. Along with that were very helpful anti-anxiety and anti-depressant drugs that I took for about a year.

I'm off the drugs now and currently don't see the therapist, but would go back in a minute if I felt the need. A very smart survivor told me one time, "There is a lot of fear and anger associated with this disease." And she was so right.....we need to find some kind of method to deal with it.

The smoking thing, I know you know they have to go. It's the hardest thing I ever did, but I have to give myself the very best possible chance at life. I gained weight, and I needed to lose about 10 pounds before this happened. Ok, so now I need to lose 20. But, hey, I'm still alive, and I don't look terrible. And, even with the need to lose the weight, quitting smoking (almost 2 years ago now) was the very best thing I ever did. On my first consult appointment with the surgeon who eventually removed my upper left lobe, he said that the single best thing I can do to protect my health was to continue to not smoke. At that time, it had only been about a week, and I didn't feel confident. But, I continued on, and it's ok and has been for a long time now.

Good luck to you. I hope you find some comfort with the boards and the good people who come here......

Cindy

[Justakid]

Mark

You can do this, come here often when you are feeling low and unable to cope. As far as having not quit smoking, there are lots that have not quit after dx. Honestly since my cancer has come back......if I could breath, I would have started back again! (Don't tell anyone!). I can't breathe though and I miss my friend that was able to calm me down!

Hang in there!!!

[Rachel]

Welcome & glad you found us. Sorry for the reasons your here.

I was DX 2 years ago & I will continue to fight. This board has helped keep me going. Keep returning to the board to get support & give it. I did not have PCI. Was going to but the beast metasticized first so I did WBR. My brain does not work like it used to but has improved a bit. You look & sound like a very strong person so hang in there And lean on us when you need to. Positive thoughts going your way.

Rachel