How do I deal?

iVillage Member
Registered: 08-30-2008
How do I deal?
8
Sat, 08-30-2008 - 4:13pm

Ever since I can remember, my dad has been sick with something serious. When I was younger it was Hepatitis C, which he thinks he got from selling blood to help raise money to support my family while he was in the army (long before I was born). He was taking interferon treatments for the Hep C for many years, until one day (in 2001 or so, I'm not sure but I was about 12) we found out that he was finally cured of Hepatitis C. Well, we didn't get to celebrate long, because one week later he was diagnosed with renal cell carcinoma (stage II or III I think). The doctors told us that they would remove the kidney, but if the cancer spread there was no treatment that was available (at the time) to help him. So, they did the surgery and were astounded to find that the tumor on his kidney was the size of a football. Since interferon is a treatment for kidney cancer, the hep C treatments may have kept the tumor mostly localized at the original site even though the tumor was so large. He did not receive radiation or chemo at the time. Anyways, after that he was considered "cancer-free" until about 3 years later when I was about 15. Then he started getting numbness and tingling in his arms and legs and a horrible pain in his back. He called his doctor, who told him it was osteoporosis causing bone loss and thus the pain. This diagnosis made no sense to anyone in my family, and so we had my dad keep calling the doctor, who told him that he was a hypochondriac and that he should just put a heating pad on the places on his back that were hurting him. Well, my father followed his advice and put a heating pad on his back. He fell asleep and when he woke up, he went back to his bedroom and asked my mom to help him take his shirt off so he could shower (at this point, it was really difficult for him to raise his arms high enough to do this). As my mom was taking his shirt off, she gasped at the sight of fairly bad burns on my father's back. She asked him if he could feel them, and he replied that he couldn't. Of course, this prompted an immediate trip to the ER. The doctors ordered an MRI, and we found out that the cancer had metastasized to his spine and was eating away at the bone. Part of his spinal column had collapsed and was pinching his spinal cord, causing the numbness, tingling, and pain. He needed surgery right away, but it had to be postponed because of the risk for infection due to the burns on his back. After the burns had healed, he had the surgery, where they reconstructed part of his spine and put metal rods along the spine for support. This surgery carries great risk of paralysis and possible death, since it is so close to the spinal cord. Luckily, he came out of the surgery with nothing more than a lot of pain and a nasty scar. He had to go through months of physical therapy to get back most of the ability to move that he once had. Then, the doctors started him on a drug called Avastin (which has a half-life of about a year) that he had to get through IV infusions.

If all this wasn't enough, in May 2007 my mother was diagnosed with stage 2 breast cancer. She had a lumpectomy, followed by a round of chemotherapy followed by radiation. Her treatments are over, but I don't believe she is currently considered in "remission".

About 7 or 8 months ago we found out from an MRI that my dad's Avastin treatments stopped working and the tumors on his spine started growing back. Since he is in Stage IV cancer, he will never be "cured" of cancer, there are only treatments we can try to see if they will work (advanced RCC is extremely difficult to treat and he is considered terminal). He tried a drug called Sutent, but it didn't work, so now he is taking weekly intravenous infusions of Torisel. MRIs have shown that although the drug is not shrinking the tumors, they aren't growing either. He has been having terrible side effects from the drug, including high triglicerides, high cholesterol, high blood glucose, diabetes, and much more. After this drug, there's not much left to try.

So, now I'm almost 19 and I'm attending college about 2.5 hours from home. I have been dealing with my parents' cancer (mostly my dad's) for about 7 years. I'm so sick of it. I've lost my faith and it feels like I'm constantly bombarded with bad news. I have people I can talk to, but none of them really understand what I'm going through and they don't know what to say or do when I'm upset. So, I usually keep my pain and sadness inside and try to forget about all these problems by keeping myself busy. I can't stand seeing my dad in so much pain and suffering so much. He's at the point where he's trying to do things like traveling while he still can. I'm not sure how to take this. It almost feels like he knows he doesn't have much time left and it kills me to think about. I guess all I am trying to say after so much rambling is that I just don't know how to deal with this anymore. I'm not giving up necessarily, but I feel a little hopeless. I just wish things could be more normal for me and my family.

iVillage Member
Registered: 08-30-2008
In reply to: lafi2008
Sat, 08-30-2008 - 6:26pm

hey,

my heart goes out to you because i can somewhat relate the frustration and sadness you feel. if you haven't already, look into getting a counselor or joining a support group at your university's mental health service center (almost all of them, including community colleges, have a department named or similar to this). it's usually no cost or at a small fee ($8 a session is what i pay) depending on how much you can afford. going to get a counselor at my college changed my life. it will help you voice your feelings and find ways to deal with what you are going through. at first i was embarrassed to seek out help, but it was the best thing i ever did. make sure you feel comfortable with the counselor you are matched up with. if you are not, make sure you try to find someone you are comfortable with. it's right for you to be picky with that sort of thing--it's a place to heal and you will only be able to do that with someone you think you will be able to trust.

i have grown up in a family that has faced many illnesses. since i was born, there has always been someone in my immediate family devastatingly ill. my family has consistently been under a great amount of stress and has experienced a great amount of sadness. unfortunately, i've spent way too much time in hospitals growing up and missing out on a "normal" childhood.

i am now 23 years old. i have just graduated college and just got my first full-time job, and just as i thought maybe for once everything was going ok as nobody in my family was currently ill--my mother was diagnosed with colon cancer in May that she's getting chemo for now.

my friends don't really understand my situation either. i try to talk to them about it, but they never know what to say because most of them have never been through anything similar--something that's even more frustrating. growing up, i was always wondering why my family was being struck with all of these hardships while everyone else's health and family's health has always been smooth sailing.

as a result of having no one to talk to, i kept everything in. i never wanted to bring anything up to my parents for fear of upsetting them, and i never wanted to say anything to my friends because i know they wouldn't understand. i was so depressed by the time i started college that i got into a lot of destructive behavior and started hanging out with the wrong crowd, so to speak.

my junior year of college, i couldn't take it anymore. i signed up at my school's psychological center to get a counselor. i graduated this past may but i am still seeing my counselor at school (which is also close to my home) until i can afford to get one on my company's health plan. i have figured out so many things about myself and my life through counseling, and it's a place where i can feel what i feel without judgment, and i am able to work through those feelings with my counselor.

i'm not a professional in the medical field so i can't say that this is exactly what you need, but i do know that in being in a similar situation, talking out my feelings helped A LOT.

hope this helps!

-k

iVillage Member
Registered: 08-30-2008
In reply to: lafi2008
Sat, 08-30-2008 - 6:48pm
I did try going to a counselor at my school at the end of last semester. There really wasn't enough time to get anything accomplished, though, and for some reason I always felt a little worse when I left. My school only lets you have 20 individual counseling sessions and I used like 3 or 4 of them last year. I kinda want to give it another try, but at the same time I want to save those 16 or 17 sessions for when I really need them, for when he dies. But, its hard to know when that's going to happen. It could happen in a year, in a month, tomorrow, who knows? I just feel like my whole life is one waiting game after another and I guess its just really hard for people who have never been through something like this to understand and relate. My friends are great people and I know they're there for me if I need them, but it almost seems like its not worth it because they don't really understand about the effect of terminal disease on family members. I think one of my friends even gets frustrated with me if I bring it up too often, even though its a HUGE part of my life. So, yeah, its all just so complicated.
iVillage Member
Registered: 08-30-2008
In reply to: lafi2008
Sun, 08-31-2008 - 8:07pm

well it's good that you tried to talk to someone. maybe you can talk to your school about your situation? i know sometimes they make exceptions with certain situations. no matter what you do, it's always good to have an outlet--whether it be through therapy, through a support group, through activities like exercise, art, writing, or music.

and you know what, as i said in my other post, im in the same boat in my situation with my friends, but sometimes even if you can't talk to them it still feels good to go out with them to just have fun and not have to think about medical and family issues.

from what you've written you seem to be a very strong person despite all that you have been through and i hope you continue on with that strength and know it will get you through the hard times.

iVillage Member
Registered: 05-04-2003
In reply to: lafi2008
Fri, 09-05-2008 - 9:22am

First of all a hug for you. Sometimes we need one from someone that has been there. Second holding inside will not help and will come out later and will even effect your health. Find a support group. Check church for recommentations. See if you can find the book Praying our Goodbye which is not about Goodbye to the person with cancer but Goodbyes to the life we have known. It has realy help many people.

iVillage Member
Registered: 06-23-2006
In reply to: lafi2008
Fri, 09-05-2008 - 4:48pm

You are not alone, ever.

iVillage Member
Registered: 04-08-2008
In reply to: lafi2008
Sat, 09-06-2008 - 6:28am

I feel so much for you in more ways than one. You are dealing with several issues and one is usually one someone can try to bare, let alone several. I feel for you with what you are going through. We can all gage from our own experiences, although everyone so very different, yet similar. Your family is going through more than most have to handle at one time. I have my own experience with lung cancer that I can share. I knew my father's time was limited. I was blessed to have experienced his last 9 days with him. I believe you must never give up hope because miracles happen all the time. My father was not the fortunate type, however, we are blessed with the time we got to share with him. Those conversations that are deep and sometimes uncomfortable. My father knew his end was near and he prepared somewhat. If that is your case, I would suggest to be open to their conversations and don't disregard anything they say.

Your journey that lays ahead is going to be a hard one and is not yet written. I pray for the very best for your family. I have been down that path. I understand all the ups and downs it takes.

I am now dealing with the loss of my father after 4 months. I understand.

iVillage Member
Registered: 09-09-2008
In reply to: lafi2008
Tue, 09-09-2008 - 2:00pm
You are a remarkable young adult and we all ache for the events you have have had to deal with at such young ages.
iVillage Member
Registered: 09-09-2008
In reply to: lafi2008
Tue, 09-09-2008 - 6:49pm

HI I just wanted to offer you some support , I kind of have gone through some similar things.


When I was little by Dad was hit by another care while he was working on his car in Germany , he was left with a steering wheel through his chest, broken legs and arm, years and years of surgery and pain.About 2 yrs ago he was Dx with cancer, after asking and asking his regular doctor to take a look at it , he went somewhere else and discovered that it was cancer and it has spread to many areas of his body , he's been under going a study at the UVA in Va and it's called IL2 he's seems to be responding well at least it hasn't grown or the tumors in his lungs , and liver haven't gone, the treatments are very hard and painful and carry quite a few risk but he'e tough and hanging on . they said he would die in 6 months