Remembering Dave Posted October 28, 2003 Share Posted October 28, 2003 Hello all, I had a very interesting day today, to say the least. I went in for my CT scan and chest x-ray this morning and all went fine. Then I met my wife for lunch-all is still fine. I took the films of the CT and x-ray by my Onc. office and saw my primary nurse and she casually mentions that we will need to look into my port due to the last films showed that the cathater was working it's way up into my neck and that she would probably call me tomorrow to schedule an appt. Immediately following that I had an appt or a Stress Test so I go over to that Dr's office and all of a sudden all H#!! breaks loose. First I get a call from my wife on my cell phone saying my Onc's office called her all frantic because I was not home and they could not reach me (DUH!!! I just left thier office not 5 minutes before they called my wife looking for me) and that I needed to check in to Outpatient regeistration IMMEDIATELY to have a Portagram done. Then I get a call at the Stress Test Dr's office from my Onc.s office and the nurse (not my primary nurse) is all in a tizzy saying I need to go to Outpatient and have the portagram done and that she was setting me up an appt and I would probably be operated on tomorrow. I asked her which hospital because my insurance does nt cover outpatient stuff at the hospital right accross the street from my Onc.s office. When I reminded her of that she got even more frantic saying what do I do, I don't know what to do, Oh my gosh, What do I do----over and over and over! Finally she calmed down, put me on hold and got me an appt at the right hospital. Meanwhile my wife is sortof freaking out, I am wondering what the heck is going on because the nurse was so frantic Sooo, I go over to the right hospital and after I finally get into the Interventional Radiologists they say No problem we will get it all fixed here today no matter what the problem is with the port--Geeze!! What had happened was that the cathater to my port had worked it's way up into my juggular vein instead of being down towards my heart like it is supposed to be. The Radiologist went into a vein in my groin and stuck a wire with a lasso on the end of it and fed it all the way up into my neck and lassoed the catheter and pulled it back down to where it is supposed to be, actually it was pretty cool, I got to watch it all while it was being done on the monitor. So now I am to be on my back for the next few days to make sure the groin incission heals up correctly. My Onc.s office was scared that the port had falllen apart which I guess can be pretty dangerouse if that happens. I know which nurse it was that was getting all frantic and it does not suprise me really. If I did not love my primary nurse and my Onc. I tell you I would prbably be looking for a new Onc. and My wife and I plan on telling them that the next time we go in, which will be this Friday. That nurses behavior was unnacceptable. Anyway that was my interesting day!! It could have been much worse and I am atg home and will be sleeping in my own bed so I thank God for another good day. God Bless you all and never stop fighting. David C. Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted October 28, 2003 Share Posted October 28, 2003 Hey Buddy, Sounds like yes indeed you had an exciting day to say the least. Sounds like to me you handled a seemingly tense situation very well. You mentioned everything went fine with your CT and X- Ray this morning. Did you already get results or did you mean it came off without a hitch ? I had a friend who had that procedure done thru his groin up to his heart for something i cant remember what. He too said it was cool ! The freaked out nurse definately should not be freaking out like that. I dont blame you for talking to Dr. about it. I was blessed at my old Drs. office with great nurses and hated to leave them behind when i changed Drs. I keep in contact with them weekly. My new Drs. nurse is great too so i am lucky. I found out just how important oncology nurses are thru my treatments. As we all know oncology nurses are a special breed. With my recurrance and facing more chemo i am going to opt for a port this time. I meet with Drs. tomm. morning and i will let them know then. You also mentioned you go to Dr. Friday. Is this for test results or just follow up visit ? Have you had your PET scan Dave i know we had discussed it recently. Well great job remaining cool under fire ! Keep us posted on how things are going with your resting up. Regards Greg Quote Link to comment Share on other sites More sharing options...
Botley Posted October 28, 2003 Share Posted October 28, 2003 Dear Dave, Good for you -- way to take control of an out of control situation -- we could use you over seas about now.... On a more serious note, I would definetly speak with the Dr. about this nurse who acted totally inappropriate. In all this time with my Mother I have only had a couple of bad experiences but I have little tolerance for incompetence at this point. Probably due to the stress and other variables but hey things become to important during this battle for each and every one of us to just be overlooked. Did you get your PET Scan results back? We thought you were waiting for them. Mom has started radiation and seems like she is already becoming more fatigued. Take good care and hope the stress test went well during all of this!! Regards, Botley Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 28, 2003 Author Share Posted October 28, 2003 Hello again. I did not get the results from the CT Scan yesterday, I will get them Friday. I was also unable to get the PET Scan due to the hospital has a traveling PET Scan machine which was unable to do me the day I was scheduled so The Docs office is trying to reschedule me at the Medical College of VA. (MCV) which could take a few more days to do and another few weeks to complete the process and get the results--they just move slow over there at MCV, so I am told. I did get a letter from my insurance company saying they would cover the PET Scan so that was a good positive sign. I too have little tollerance for incompetant people and there is no place for incompetance when dealing with Cancer. I sure hope that nurse was just having a bad day. Well I better get off here and on my back, I am supposed to kep my leg straight and stay off it for 48 hours, that will be difficult for me to do. Quote Link to comment Share on other sites More sharing options...
RAY A Posted October 28, 2003 Share Posted October 28, 2003 Dave, bad timing!!! I am thinking of getting the port , now you scareing me away from it. Good luck with your results I go tomorrow for my results from a CT scan and MRI. Pray for good results for all. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 28, 2003 Share Posted October 28, 2003 I'm very glad you are okay, Dave. Stay off the leg and heal. And I hope your scans show good results when you finally get the news. You've had enough rough stuff to deal with this week. Fay A. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 28, 2003 Share Posted October 28, 2003 David, that kind of excitement you don't need. I'm glad you came through it all well. Blessings. Don Quote Link to comment Share on other sites More sharing options...
karen335 Posted October 28, 2003 Share Posted October 28, 2003 Dave, Get some rest, you need it after your hectic time at the docs office. Praying for you and clean scans. Keep the faith... Karen Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 29, 2003 Share Posted October 29, 2003 WOW DAVE! Just reading your post put me into a tizzy!!!!!!!!!! Glad you are ok! Peg Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 29, 2003 Author Share Posted October 29, 2003 RAY - this is Karen C. Don't let this experience discourage you. I think you should still get the portacath. Dave said that someone, the radiologist, I guess, said the catheter part (the tube that goes into the vein) wasn't long enough or wasn't as long as most of them are, I guess, and that might be why it flipped out of place. Just tell them when you get it that you want to make sure you get one with a long enough catheter. OK, off the topic, but while I'm here - I get the feeling that when people call up and want to know how Dave is doing, they don't really understand (or really care, which is harsh of me to assume) about the ups and downs like we had on Monday. I think people who've never had cancer or someone close to them had it, I think they assume that you're either dying or you're fine. Dave's not dying but he's not exactly fine, either. I'm just saying this because I got a phone call on Monday, RIGHT BEFORE all he%$#* broke loose, from a well meaning person at our church, asking how he is doing, and when I said, well, he is doing OK but he isn't great, they immediately change the subject. LIke they want to hear "he's dying" or they want to hear "he's in remission" and that's that. Oh well, not a big deal, but you learn alot about human nature when you go through something like this. Best to all, Karen C. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted October 29, 2003 Share Posted October 29, 2003 I firmly believe that people who have not been through the cancer experience themselves or with a close loved one have no clue as to what we are going through. We have to forgive their ignorance. Some are savvy enough to realize they don't know what it is all about, but love and support you anyway. And there are others, like you said, that want it to be over one way or another and don't know how to deal with the in-between. Just know that there are people who do care and want to support you through the whole mess. Don Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 29, 2003 Share Posted October 29, 2003 It has been my experience that not only are people clueless, but they don't know how to respond with quiet support. It is too alien an experience for them to imagine. Just consider the intent. They mean well, even if they drive you nuts. It could be worse.... you could be all alone and noone to give a da^^. That's definitely no fun. Being diagnosed with cancer was the most alienating experience of my life. Like I no longer belonged to the mainstream human race. Hard to comprehend unless you've been there. Regards, MaryAnn Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 29, 2003 Author Share Posted October 29, 2003 MaryAnn and Don, You're both so right. I am glad to have the support we do. And I know that lots of people are well meaning and just don't understand what it's like. Although I will say that we hadn't heard from anyone at our church in months, except for when I go on Sunday and someone asks as I walk past, but any more it's just one person. The minister barely mentions it and then every week says "I'm going to call Dave this week" and hasn't. So I guess I'm a little annoyed with the whole bunch. We have one good, old friend there, the mother of one of my best friends, who lost her husband to cancer a couple of years ago, and I mean they are the pillars of that church, and she told me that the minister, especially, feels that his mission is to make sure your faith is there and strong and then moves on to the next person - his main concern is your spiritual health and if that's OK he doesn't get too wrapped up in your physical health. Now, she wasn't saying this in defense of him, I think it was her own analysis based on what she'd just gone through herself. Again, I am venting, and Dave is going to read this and tell me I'm not thankful for all we have. we have had lots and lots of support - we have an entire shoebox full of cards and letters. But they all came in a torrent at the beginning. Maybe I should go see the shrink I saw when I had miscarriages to help me make better sense of it all ! I will say that if it weren't for Dave's parents giving up six months of their lives to stay with us I don't know how we would have gotten through those six months. Thank God for wonderful family. Love to all, Karen C. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 29, 2003 Share Posted October 29, 2003 Karen, My parents stayed with me on and off for 7 months, essentially put their entire lives on hold to see me thru the chemo and the post surgical periods. The saddest day of my life was when I had to tell my dad on his 80th birthday I had cancer. Thank the good Lord for family. MaryAnn Quote Link to comment Share on other sites More sharing options...
Guest rse1961 Posted October 30, 2003 Share Posted October 30, 2003 Karen C., I had to reply when I read your post. I lost my mother-in law to cancer in June. We went through the same kind of treatment from the "church family". A few were wonderful and still are to my father-in-law (who has Alzheimers) but you certainly find out who really cares and who does not. Perhaps they do care (Now I'm trying to give the benefit) but don't know how to show it and deal with all the patient and family are going through. My mother-in-law played the organ for our church for 40 years or more! The turnout at her funeral was huge! I wondered where all these people were during the last six months of her life... Just be thankful you do have "true friends" that you can rely on, don't be afraid to ask those people for help when you need it. My M-I-L had survived three different type of cancers for 30 (yes, 30) years before we lost her. Those people and friends that were there for her first bout were the ones who were still there for her last bout with cancer! During her last few weeks my daughter was on a missions trip in Japan. We were trying desperately to get her home because she was very close to her grandma (lots of overseas phone calls spent crying with her). Due to all the regulations now in the air safety, etc. we were unable to do that until the day before she died. During this very stressful time my own sister called me and asked if my M-I-L was in renal failure! I wanted to scream at her WHAT DIFFERENCE DOES IT MAKE? Granted, she was in nursing school at the time, but failed to look at our situation and feelings with empathy. Now I feel as if I have vented when really I was trying to let you know you're not alone. Stick with those true friends. And when things are better and you two go out to celebrate good news, toast those who have stood by you and prayed with you. Rhonda Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 30, 2003 Author Share Posted October 30, 2003 Rhonda - that's pretty wild, because our good friend who lost her husband, SHE is the organist at the church and just celebrated 45 years! And she told me herself that you can only rely on family. I will say we have one neighbor that I can call up and ask for favors just about any time and he's great, and I've only had to do it two or three times in the last six months. Mostly, if we get stuck at the hospital or something, we call him to let our dogs out for a while. We live in a rural area about 20 miles from the nearest hospital and almost an hour from the hospital where Dave gets most of his tests done, so its good to have a trusty neighbor for that, add to the fact that he's a writer and works from home so he's almost always there. I've learned alot from this experience, and I plan on BEING THERE the next time someone I know goes through this. Thanks for all the input and advice - keep it coming - and wish us luck, we get results of Dave's CT scan tomorrow morning,. Karen C. Quote Link to comment Share on other sites More sharing options...
Guest rse1961 Posted October 30, 2003 Share Posted October 30, 2003 Karen C., Good luck to you guys tomorrow. I will think of you both. But...if you are only calling on your neighbor for help 2 or 3 times in 6 months! You're not asking for enough help. You and Dave need time alone. If your picture is true you have an adorable (but attention needing) child. As my kids are both in college now ( 18 and 19) I can't imagine having to cope with all of that. Ask for more help in babysitting for nights out when Dave's feeling well and also just when you need time alone! We've been married 25 yrs. now and believe me the time for bonding never goes away! Again, God bless and good luck tomorrow. Rhonda Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.