Connie22 Posted May 19, 2006 Share Posted May 19, 2006 Just when we thought things were going good, the beast came back with a full face blow. Mom started with coughing up a lot of blood about a month ago. Her Onc. said that this is normal for lung cancer patients. So..at her last chemo tx, mom and I decided that after this Dr. made an appointment for the Mayo, we would then fire him and get a new Dr. Someone who doesn't just smile and tell us everything is ok, and takes no time to explain anything to us. I have learned so much more here then from the Dr. He gets a little angry when I second guess him. Anyways, long story short, my hubby and I are on our way to Mexico, last Wed. May 10, and I call my mom from the Denver Airport, when we land, it's like 8 am, and she is so short of breath even with her oxygen on. So I call my daughter who is studying for college finals, to go take her to the emergency room. Mom first wants her to call the Dr.. so Meg does and they said it could be a clot in her legs. Now she has been on Lovenox for 2 1/2 months due to several clots in the lungs. All this time noone checks to see if the medicine has done anything to the clots in SVC or the lungs or the shoulder blades or the arm, they kept telling us, they don't need to. The ER admits her with fluid in the lungs. Thursday, they poke a needle in her back to drain the fluid. (her reg. oncologist is on vacation yeah!!!) Friday the fluid is back so they surgicaly put in a tube. Sat. is alittle better Sun. is getting worse again and Monday they do surgery and find a clot almost the size of a football. No wonder why she coughing up all the blood. They are not sure what caused it, but it could be the Lovenox.I'm not sure what the procedure is called, but they scaped the lung and put talc powder in there to help it scar. They said she would probably be in ICU for 2 days, when they were finished she was not taken to ICu at all. She is a fighter. Needless to say the trip was a mess. I fired the old onc. and hired the new one all the way from Mexico. She has had a total of 8 pints of blood and last night had the drainage tube removed. She will be in the hospital until at least Mon. They also found a few new spots on the media stinum. I am hoping it has not spread anywhere else. We had to change her appointment with the Mayo, which was suppose to be this Monday, until the 12th of June. I would appreciate any info on what to do from here. I am soooooo scarred. Of course we are so close, I am at the hospital 24/7, she plays off of my emotions. If I show fear she becomes fearfull. It is so hard to always be the strong one. Thanks for all the previous prayers and words of encouragement. This board is diffently the best!!!!! Hugs and Prayers to you all Connie Quote Link to comment Share on other sites More sharing options...
Linda661 Posted May 19, 2006 Share Posted May 19, 2006 Connie: I am so sorry to read that you are going through all of this. Sounds way too familiar as well, unfortunately . Can't really say about your mom's particular case, but the coughing blood/clotting can also be an effect from the radiation treatment -- at least we have been told that that is something we need to watch for as a result of the radiation....and radiation effects last for several months (at least) after treatment stops (so I learned just yesterday from our radiation onc.) Just something to consider that it may not be the med. causing the problem at all. My mom is now scheduled to go through 37 radiation treatments and I see from your signature that your mom went through around 33 or so? This is why I am mentioning this. Glad you were able to fire the doc. that isn't being at all helpful in this -- hope you get the support you need from the new one and Mayo. Positive thoughts and prayers for you and your family through all of this, Linda Quote Link to comment Share on other sites More sharing options...
ma's kid Posted May 19, 2006 Share Posted May 19, 2006 Lots of positive thoughts and prayers for your mom. Libby Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted May 19, 2006 Share Posted May 19, 2006 Connie, I'm so glad you changed doctors. Bleeding is dangerous and definitely needs full investigation. The doctor should keep you fully informed of what is going on, not shrug you off. I hope your appointment on the 12th goes well and your Mom improves each day. Joanie Quote Link to comment Share on other sites More sharing options...
Connie22 Posted May 20, 2006 Author Share Posted May 20, 2006 thank you soooo much for the kind words. Linda thanks a million for the comment about radiation, no-one has told us that. I found out today the next line of chemo is alima. I will be researching and finding out all that I can. She is so weak today, but gaining strength. She starts the new chemo on Tues after Memorial Day. She was given a B-12 shot and folic acid today. I pray this works.It looks like if everything goes ok she'll be getting out of the hospital on Tuesday, Thanks again everyone!! Connie Quote Link to comment Share on other sites More sharing options...
Carleen Posted May 20, 2006 Share Posted May 20, 2006 Connie, It sounds like your poor mom has been through so much lately. Glad you fired that lax onc. I just hate it when I hear of doctors that don't have the heart or passion for the cancer fight. I will pray hard that the Alimta works wonders for her. My Keith had Alimta. He tolerated it really well, but did have some dry skin issues. Apparantly skin rashes and dryness are not uncommon. He never developed a rash, but I kept him drinking lots of water, and gave him daily rub downs with Cetaphil cream (it was recommended by a dermatologist as one of the most hydrating moisture creams over the counter to me on a completely different matter and occassion, but I thought it would work; it did) Hope all gets straightened out and mom is feeling better real soon, and on the road to healing with Alimta. Quote Link to comment Share on other sites More sharing options...
kamataca Posted May 21, 2006 Share Posted May 21, 2006 Holy smokes! If you can do all that from and airport and a foreign country, I am quite impressed! Seriously, I am sorry that you had such a rough road. Sounds like Mom is, indeed, quite the fighter. Keep us posted and I will keep praying. Kelly Quote Link to comment Share on other sites More sharing options...
Don M Posted May 21, 2006 Share Posted May 21, 2006 Hi Connie: I hope things go better for your mom now. I am going to start alimta when I am done with radiation in mid june. I have heard that its effects genrally are not as bad as other chemos, but some people still have a real hard time with it. The main problem some people have with it is shortness of breath. I hope it works well for your mom. Don M Quote Link to comment Share on other sites More sharing options...
hollyanne Posted May 21, 2006 Share Posted May 21, 2006 Connie - I will definitely hold you guys in my prayers. I know how terribly scary all of this...you start living minute to minute, waiting for the next "thing" to happen. Sounds like you are taking each day as it comes, which is all you can do. Keep seeking out information, it will give you a little better sense of control. Thinking of you guys, Holly Quote Link to comment Share on other sites More sharing options...
Connie22 Posted May 26, 2006 Author Share Posted May 26, 2006 Alot has changed since the last time I posted. I don't even know whre to begin. I have been at the hospital 24/7 beings I have learned that you really cannot trust a lot of the staff. I get to mom's room on Friday morning and she tells me about this party she had in her room, and when she woke up there were all kinds of nurses standing over her. I went and spoke to the nurse that was on duty and she is said that she had taken the oxygen off and was laying in the doorway asking for help. She couldn't breathe. The oxygen has a beeper and the nurse claims she didn't hear it go off. So I have been there everynight. Then on Sat late afternoon, her right arm and right ankle is swollen so I go get the nurse and insist she call the onc. on call, who says to her I'll look at it tomorrow afternoon. Sat. night was a long night.... Sunday morning she won't wake up to eat and is very lethergic, the nurse is worried but does nothing. Mid morning her pulmonary Dr arrives on the floor and I go and ask him to look at mom. He seems annoyed but walks into the room with me and says the arm and ankle don't look any worse then yesterday. I say her face is swollen now too. He asks me to come out of the room and once again tells me how serious this disease is..Like I don't understand. I ask him to look at the x-rays from this morning. Five minutes later her calls me into the cage (all glass area where no-one can hear what is being said)and tells me that her other lung is filling up with blood (her good lung). He recommends we do nothing and she will pass in 2-4 days. I said to him and the 2 nurses in there, you will drain it and it will happen today. He said there is no chance for her cause now the cancer has spread to the good lung. He agrees to drain it with the needle, but tells us to call all family members home. He schedules it for 1:00pm and at 12:45 her oxygen crashes and the nurses are freaking out waiting for them. My cousins (who are both nurses) come up there about 11:30 and can see things are not good. They inform the nurses on how to handle the situation, thank GOD. She makes it. My 2 daughters are there when they pull the liguid out and guess what it is not blood it is fluid and not cancerous. She then is put on 15 liters of oxygen with the full bag and rushed to ICU, they tell us they will have to intubate by late afternoon and she will pass within 48 hours. Will she is still alive and 2 days ago was moved out of ICU and is expected to be out by Monday. Her oxygen is back to the reg oxygen and back to 7 liters not real good but getting better. There is alot more to this story but it is getting real long. I will say we called in another set of Drs. today who said both of the lungs fluid were cancer free. No-one ever told us that. She does have fluid around the heart, which could be causing the lungs to fill up.This is exactly like a roller coaster. My mom is sitting up and talking and playing games. Now if i had listened to the Dr. I would have killed her. I cannot believe it. Sorry it is so long. Connie Quote Link to comment Share on other sites More sharing options...
Eni123 Posted May 26, 2006 Share Posted May 26, 2006 Unbelievable. Thank goodness you were so persistent with the doctors. Your knowledge of her condition really saved her. The ups and downs of this disease are so difficult to handle. Just appreciate every extra day you have with your mother. You and your family are in my thoughts Quote Link to comment Share on other sites More sharing options...
Treebywater Posted May 26, 2006 Share Posted May 26, 2006 Oh. My. God. That just makes me want to scream. I'm so glad your Mom is doing better, and I just hate that you've had to go through this hell with the people who are supposed to be helping you! Way to be a good advocate and listen to your guy. ((((hugs)))) to you and your Mom. Quote Link to comment Share on other sites More sharing options...
Don M Posted May 26, 2006 Share Posted May 26, 2006 Wow...unbelieveable. No wonder I don't like hospitals. I hope your mom pulls out of it and there is no more...arrogant bumbling. Don M Quote Link to comment Share on other sites More sharing options...
Mskim Posted May 26, 2006 Share Posted May 26, 2006 I am so sorry the medical care your mom has recived was awful. It is fortunate she has you there as her champion... You continue to be in my prayers. Kim Quote Link to comment Share on other sites More sharing options...
flwrjunke Posted May 26, 2006 Share Posted May 26, 2006 Connie, I so glad that you were there to fight for your Mom. Please know you and your family are in my prayers. Patty Quote Link to comment Share on other sites More sharing options...
Welthy Posted May 27, 2006 Share Posted May 27, 2006 God bless you for being a "pain in the *ss!" It takes a strong person to stand up to these medical "professionals". Congrats on saving her! This story just honks me off so badly. I remember doing rotating shifts at the hospital with family members because we didn't trust the staff either. Hope things go better for all of you. Welthy Quote Link to comment Share on other sites More sharing options...
Linda661 Posted May 27, 2006 Share Posted May 27, 2006 Oh Connie, thank goodness for your efforts!!! I've found that camping out at the hospital is necessary too. You don't mention in your signature anything about your mom having a history of heart problems, other than fluid being around the heart (or I missed it): Obvious one-sided swelling of limbs can be indicative of heart-related issue, not LC issue, going on -- so I learned over the last 5 months, not from direct experience with my mom, but from overheard discussions by nurses around one of my mom's past roommates at the nursing home -- that particular person was noted by them with extensive right-sided swelling (but it was much worse than what you have said) so take what I am saying here with a big grain of salt. Might be worth checking into if you find this info. applicable to your mom's situation. Just understand that what I am saying here is a big "hear say" that might be totally irrelevant to you. Last thing I want to do is take you down a path of falsehood. Hugs, Linda 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.