Geez, what a week. It seems like it's never ending, yet it's only just begun.
The port-a-cath went well on Tues., no problems, other than he complains his shoulder hurts.
What I'm really worried about is that he hasn't started treatment yet. He got "marked" and exrayed at the radiologist, and is set to start this Mon., along with his chemo treatment. (which I will tell you about in a moment)
Soo, this is my worry: No treatment yet, but he is complaining of very bad pain in his rear. He's miserable to say the least, and has very little energy. Today he told me he was tired just from walking, and it took everything out of him. Were you in alot of pain like this before you started treatment? It has been getting worse by the day it seems. It makes me worry that the cancer is spreading fast. You know he was dx stage 3 with lympnode involvement, with no sign of spreading to organs.....because the ct scan was good. Honestly, I'm freaked out a little after reading some of the posts that alot of people are dx stage 1-3 with no symptoms. He has alot of symptoms now and now is in alot of pain---and we haven't even started yet. I'm trying to stay positive, but today he yelled at me and told me that he was in alot of F_ _ _ _ _ pain! He can't tolerate any noise, he constantly tells us to be quiet, and shhhh's us. It's me and our "3" small kids....pretty hard to keep the troops quiet. Is the pain going to get worse once he starts treatment? Ughhh.
Okay this is all I know on the treatment, just to keep you up to speed. Starting on Mon., and then every 2 weeks for a period of 6 weeks he will get chemo at the doc's office, a combo of Avastin and Oxaliplatinum, in which she called it a "blast". She said he will be in the office for about 3-4 hours, and the effects of this should last for 2-3 days after?? (not sure what she meant), and also starting on Mon., after this treatment he gets hooked up with the home nurse and the continous chemo-a lower dose of 5FU for 5 days a week in the pump. In conjunction with this, he will have radiation treatment 5 days a week for the 6 full weeks as the chemo- simultaneously.
All new to me, hope I got it all right. I get the official low down on this stuff mon. at the appts. What's your opinion on this treatment? She said it was aggressive, and her goal was a cure?
Crying on the inside, smiling on the outside
Gotta stay strong for the troops, but I too, am already pooped.
I pray for strength daily
p.s. CD- you truly have an incredible heart. I feel like you are holding my hand through this. I'll be honest with you, at this point today, when this stuff is done, I may not want to talk about it much--just wanna get on with life. How wonderful that you continue to support us "newbies" to this day, when you are on your recovery road, and you are still here helping. You are an amazing guy.
Oh Tonya, I really feel for you. I don't think there is anything worse than seeing someone you love in pain. It gives you such a sense of helplessness. I have not gone over your previous posts to find out if you have a good support system but is there anyone who could take the kids off you for the day from time to time? I cannot imagine having to try and keep life "normal" for them with all this going on. You need a break too. Soldiering on, knowing you are exhausted will not do anyone any good. You MUST look after yourself.
I am sorry to hear your husband is in such pain. I cannot help with this as mine did not have pain before treatment, except for horrible bladder spasms as a result of the catheter he had in for nearly a year. He does not express himself much anyway but he did used to become even more introverted than he normally is. Has he told his doctors about the pain? There must be something to help with this. In this day and age, noone should have to feel pain to that extent.
The truth is that the next few weeks in particular will not be easy but they will pass. The treatment is aggressive but with good intent and, again, it is for a time. Try to look at it in the long term, if possible, that in a few months, this will be over and your family will be able to resume that "normal" life. It may never be quite the same again but it will certainly be better than it is now. Allow your husband to vent his feelings but do not take them personally. I know all this is easy to say but when you are in it, it is a nightmare. I do remember nearly losing it on a couple of occasions when I just felt like giving up. But we all have an amazing strength when the time comes.
Do take care of yourself, Tonya. Once treatment starts, I hope things do not seem so scary. I remember the morning my husband was to start chemo, I just burst into tears with him....I was so afraid. After the first session, it did not seem so scary any more. The anticipation is often worse than the event. I have to keep reminding myself of that now I am going through that same fear with the prospects of my own chemotherapy!! Life can be rough, eh!
In love and prayers,
Husband dx July 2003, advanced rectal cancer stage 111C; myself dx July 2006 indolent lymphoma; husband dx February 2010, stage 2 prostate cancer.
Pain is not a gauge of the degree of cancer in many cases. I had tremendous pain, similar to what you described. I still have pain down there and the doc thinks the tumor is gone.
I heard from the doc that I would start to feel better after I start chemo and she was right. It was amazing how much better I got after the treatment started, but it felt like forever before we got going as well.
I can't imagine what its like with young kids, but all I wanted was to look at my wife and I could barely move. I was (as you two are) in shock. My wife channeled it by getting angbry and trying to figure out what caused it while I simply could not believe it was happening.
In many ways I bet the kids are acting out and sensing your anxiety. My little doggy did at first and he sat quietly by my side for a month.
Another thing you said, "I'll be honest with you, at this point today, when this stuff is done, I may not want to talk about it much--just wanna get on with life." I think its something we all strive to do. I have said to my doc and the nurses that I love them but my goal is to never see them again...
My prayers are with you. Your family will all get through it.
I have been worried about you, I have been following your posts. I haven't seen anything this past week on your tests/doc appointments. You mentioned that you will be starting chemo soon as well. wow. It boggles my mind how your husband was ill and now you. I've been doing alot of research on cancer lately, and I just read an article that 1 in 2 men will get cancer sometime in their life, and 1 in 3 women will get cancer at some point in their life. That seems awfully high, or atleast higher than the past. The only positive thing I can say right now is that I'm thankful were living in this day and age, when we can fight it. Many years ago we would of just been out of luck, so atleast we have hope. They may never entirely find a cure, maybe just a way to kill it, but I hope and pray that they find the reason, why? What causes this, there seems to be so many more people being diagnosed with this. Also, there also are alot of people that beat it now because of the progress that has been made.
Tommorrow there is an older couple coming to our home to visit us. They are both cancer survivors, and have both been the patient and the caregiver. They are incredible people and I think want to be of encouragement to us. A support system, as you have said. And yes I need one right now. Many of our friends (in their mid 30's) don't know how to cope with this stuff and I guess their way of coping is to pull away. As in my husbands case, I feel he is doing that to me right now. Someone lately reminded me that everyone deals/copes with things differently. My husband is more reserved naturally, and never asks for help or support. I'm just the opposite, and in my coping I'm finding that right now the more I talk about it or study on it is helping me now. I guess we are all so different in our ways.
Bossan- Thanks for the information on the pain it does make me feel somewhat better that you mention about the level of pain has no correlation with the degree of the cancer. They also mentioned like you said about the pain getting better once he started, I hope that's his case.
okay- here's one for you? He asked me to find out about medicinal marijauna for pain? Is it legal in some states? He said that he heard there were cancer centers that prescribed this for pain, I told him I didn't think so. Any knowledge on this. Last I heard Woody Harrelson was fighting to make it legal, I thought it was still banned even for medicinal purposes?
oh--Bossan I found a new wine, it's a dolcetto--much lighter than the merlots and pinot noir.
I CAN imagine how it is with young kids...my wife and I have been there and done that for the past nearly three years. You say now that you want NOTHING to do with cancer afterwards, and my wife still says that, despite her ability to help people much in the same manner I try to!!!
I can COMPLETELY understand the fact that you have "3" going on "4" kids right now, and I wish I could tell you that this will get better overnight. It won't. And the loss of control and watching the one's we love in pain is usually what gets to all of us. My advice, concentrate on the things that you DO have control over. For example, your husband is probably NOT telling them the whole truth about his condition or his pain (we men tend to do this). I can tell you that your husband is JUST as scared as you right now, but is battling with the image of what a man should do, etc., and what he really CAN DO right now. First off, he NEEDS pain meds... effective enough and at doses high enough to knock out the pain. He will be easier to live with for you and the kids (it's not fair that you should have to live with his irrational irritability on top of everything else). I'm sure that your husband's group has oncologists on call who can call in an emergency prescription for pain killers. Then speak with his radiation oncologist on Monday regarding a prescription for painkillers (in the beginning for me, Lortab's with 10 mg of hydrocodone did the trick). Remember though, EVERYONE'S pain threshold is different and what worked for me may not for him. He also needs to be on an anti-anxiety medication-- such as Ativan or Klonopin (my recommendation is Klonopin because it stays in his system at a steady dose for a while, without the rollercoaster effects). Also, with what he is facing, he should be on an anti-depressant (anything they feel appropriate is good). I am CERTAIN that either his radiation oncologist or primary oncologist will be MORE THAN HAPPY to start him on these medications. In the beginning, they will make him tired. His body will get used to them though, and you will notice him regain some energy. Honestly though, get used to him being tired, and having some outbursts or irrational behavior. MOST people suffer this, in my experience, especially the younger we are for some reason. They may advise your husband to start seeing a psychiatrist who can continue to manage these medications... the pain killer though will come from them, and is of primary concern right now. He will also most likey experience pain as the radiation continues-- It's like a microwave... he will burn from the inside out, and WILL experience pain. I'm sorry for the analogy... by NO MEANS do I mean to make light of what you two are going through... remember, my wife and I literally just went through it, and continue to battle other side effects that I am trying like hell to have you two avoid. The truth is though...there is NO REASON that he needs to be uncomfortable or in pain at the beginning of what is going to be a long battle, and really a defining moment in both of your lives.
As for you Tonya, you too need to take care of yourself. This DEFINITELY includes speaking with a psychiatrist, support group, here... and getting medication as well. For now, you can call your GP or GYN, whoever cares for your health, and tell them you need something to help with the anxiety level during the day, and sleeping at night. Tell him/her of the situation and the fact that you DO plan to find a psych, but have SO MUCH on your plate right now that you need them to help by starting you on some meds-- an anti anxiety pill (Xanax XR, Klonopin, or Ativan), a sleep aid (Ambien, Ambien CR, or Rozerem), and an anti-depressant (Klonopin, Paxil CR, Wellbutrin XL). All the meds are very similar and will help for now. You can always switch when you do find a psych. And there is NOTHING WRONG with taking some meds to help through this EXTREMELY trying time that nobody will really "get" unless they have walked in your shoes. Your GP/GYN will be more than eager to help you in ANY way he/she can. You may say that you don't need this right now, or may be against the use of medication. But trust me, my wife will tell you, these are the times for which medications are intended ...it has been unbelievably difficult for her with the "2" sometimes "3" kids! even with the medication. Some days you just feel as though you are going crazy... this is a perfectly normal response to an unfortunate circumstance.
Another thing is don't worry about the house going to hell. I mean, still have the kids do their routine chores if they have any, but remember, Better Homes and Gardens is NOT coming in to take any pictures. Also, accept ANY help that is offered... you are NOT taking advangage or viewed upon as a charity case. These people TRULY want to help you (It makes them feel better about themselves), and this is one way they know how. Have a friend set up a calendar of available days and handle this for you so that you won't have to talk with EVERYONE under the sun about your husband and how he's doing, how you are doing, how the kids are doing, etc.... are you holding up? How are the kids?, and the star of the hour...your husband.... I don't mean to sound mean, or insensitive, or lacking compassion. It's just human nature, some people literally have a need to feed off other's misery, while others ARE truly concerned. But you just CAN'T emotionally be put in that situation time and time again. It's exhausting.
Don't be afraid to turn the phones down or off, and let the machine get it. Ask your mother or in-law to be a point person to fill in how you all are doing, how the surgery went, etc. When it comes time for those meals to be dropped off, DON'T have everyone who is preparing meals come to the house to deliver it. Let your designated person select 1 or 2 friends in addition to her/himself to help with drop off and arrange that with the person helping to cook. Place a cooler on the front steps, or back porch where they can drop the food off nightly at a designated time...5:30 or 6PM... You have little ones and can't wait much longer than that. I know you are laughing right now or shaking you head in disbelief of what I am telling you, but TRUST ME, A PERSON WHO HAS GONE THROUGH THIS, you aren't going to want what little energy you have left to go to talking about what you are living EVERY DAY for what feels like forever. Nor will your husband feel up to talking with anybody. Also, don't be afraid to tell your designated point person that the family doesn't eat xxxxxxxx or the kids REALLY love yyyyyyyyyyy. No sense having food if the kids are not going to eat it! That doesn't make your day or life ANY easier. And if you have too much food, freeze it for an easy meal after your husband has surgery, or does adjuvant chemo (chemo post surgery).
ALL of the above are things that you DO have control over. I hope you take my advice and act on it.
As for the chemo/radiation... chemo/rad continues to work in his body even when he is NOT receiving therapy. You are NOT making things worse by waiting until Wednesday or a week or two beyond if you want other opinions. The regimens though, sounds like a VERY acceptable plan. I DON'T know whether you or your husband took my advice to try to protect his genitals... I was happy to see that the two of you were discussing the debate between a sex life, or a colostomy bag for his life. It is NOT being selfish, or trivial to talk about... these are MAJOR issues in a relationship at your age. I WISH SOMEONE HAD TOLD MY WIFE AND I THIS BEFORE I WENT FOR THERAPY AT 31. At the time they told me that it was possible that I may have SOME difficulty, but that Viagra would take care of it all! And depending on what doctor you talk with, they will swear to you that chemo and radiation do NOT have any role in changing the cells in your body, or your blood vessels, nerves, etc. And that platinum based chemo agents (oxaliplatin) can kill your testicles' ability to produce testosterone. (I wear a patch now because my levels were so low afterward). Or that you COULD have a side effect of not being able to urinate.--- studies show this is directly coorelated to the amount of time your husband has a catheter in for emptying his bladder post resection. The IDEAL time is approximately 7 days, and then removed at 6AM giving him a chance to try to pee for a WHILE. (I still cath). PLEASE DON'T GET ME WRONG... Even had my wife and I been told all this, we still would have gone for the same treatment... knock on wood, the aggressive regimen I went through saved my life. I just wish there was someone (like me for you) who had told me ALL of this. Even though our heads were spinning, it was information we NEEDED TO KNOW in our young lives.
Again, I hope I have not overwhelmed you or provided TMI. I WILL be here to hold your hand WHENEVER needed... I'm sorry it wasn't earlier today... I'm sure you know how children have their 32 stich mishaps so close to the beginning of school. I'll check whenever possible, but frequently over the next few days.
Good Luck to you , your husband and family.
wow, its like reading a bad movie. Yes take care of yourself. It took me the loss of 28 kilos, and basically having a mental crash. hubby needs you and so do the kids. Take all the help and support that comes your way. I was far too pigheaded and bloody minded, thought I could do the lot. Take meds and talk to the pysh, life is too precious, and you want to be as healthy as possible, because hubby will need to lean on you and grap all the strength he can. God Bless, and don't do it on your own, family and friends are hurting to and by helping you and the kids it helps them come to terms with this insidious disease. I wish you and hubby and the kids all the love and support that can be mustered.