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Fear

LMK
Posts: 2
Joined: Jul 2003

Hi. I am 33 and was diagnosed with Hodgkin's stage 4b last September. I have undergone 6 months of ABVD. The gallium scan after treatment indicated there may still be a node with cancer in my chest. I am awaiting a PET scan to determine whether there is residual cancer. If there is then I will need an autologous bone marrow transplant. I am not just coping with the cancer as the Hodkin's came in the same year I lost my 2 1/2 month old baby girl. She had Trisomy 18 and those 2 and 1/2 months were spent in and out of hospitals waiting for her to die.
Now since the chance of autologous transplant is looming my husband and I have been referred for fertility counselling. My oncologist has told me that there is a very good chance of being infertile after the treatment. If my Hodgkin's re-occurs or is resistant to treatment I don't know if I will ever have the chance to have another child.

I have so much fear and anger and hopelessness built up that I don't know what to do. I have strong family and friend support to talk to but at times it seems like everyone is just going on with their happy lives and I am left behind in pain. They all have their 2 kids and house in the burbs and it makes me so angry. I want some reassurance that this is all going to turn out well but I lost that kind of hope and belief in life with the death of my daughter. I guess I just wanted to hear from anyone who has been through this hell and has been able to have a family.

Thanks for listening.

pittsburghpete
Posts: 10
Joined: Jun 2003

I have only walk in your shoes for part of the path you are on, but I will try to offer my thoughts. I had Hodgkins Stage IIIA in 1969 and 1970. At that time, treatment was far less effective than today. I started with radiation to the upper mantle, which went reasonably well, and was scheduled for radiation to the abdominal area but could only complete half the prescribed amount because my white count dropped so much. They had no drug to boost white count back then. Things just seemed to be going from bad to worse. When the lump in my neck was taken out, the doctors and nurses in the small Michigan town where I was going to graduate school told me it probably wasnt cancer because it was soft, and for some other reason which I cant recall now. When it came back Hodgkins (3 days after surgery), I said to myself "why me" and "this isnt fair, I'm just starting out in life". Before I had the lymphangiogram to stage it (I dont know if they still do those these days), I was told what an excellent chance I would have to survive if the disease had not migrated below the diaphragm into the abdomen. Then I learned it had, and it was another shock. Not being able to take the full lower half radiation was another kick in the head. The surgeon told me the nerves in my neck would grow back in a few months, but it was years before I could feel anything in that section of neck again.

I was put on MOPP. The fourth drug in the protocol, Matulane (I forgot the generic name for it that most people know it by) had just come off the experimental list. I figured I was on steep downhill slide and wouldnt survive. As the years rolled by and fear finally gave way to the realization that I had survived, my wife and I decided to have kids. When nothing happened after she had her IUD removed, we were told that the treatment had almost certainly sterilized me.

They were wrong. We had two kids. Sometimes you are not sliding as far down as it feels like at the time.

However, our second child was born with some birth defects which have impeded her mobility and created learning disabilities for her. She has improved a great deal, but still walks with forearm crutches, and we worry about how she will make a living and make her way in the world. That is not as bad as losing a child, but I do understand that there is nothing that can happen to you that gives you as sickening a feeling as something bad happening to your child.

I'm not sure if I've offered any wisdom here, but at least you can know that there is someone else who has travelled some of the path that you are on.

If you want to email me, it's pglasser1@lycos.com. Dont feel obligated to respond, I understand the need for solitude in these moments also.

sherra
Posts: 41
Joined: Oct 2002

Lee-Ann
I'm so sorry to hear about the loss of your daughter, I can't imagine anything worse to go through.
You sound like a strong person. You've already endured so much in your life and you've made it this far. You should be proud of yourself. I can't relate to losing a child or most of what you are experiencing now but I am a cancer patient and I know how it feels to be angry. I get angry that I had to go through this and angry that no matter how hard my family and friends try they will never fully understand how I feel and they will never (I pray) be able to relate to my angers and fears about life. Sometimes I look at some of their "problems" and think if you only knew what a "problem" really was. I get jealous that they can all live the life they choose and mine is confind by treatments, doctor's appts. and medical bills. I guess this would explain why my parents always said, "Life is not fair and nobody ever said it would be." With everything I've been through and everything that is yet to come I try to remain positive. I know thats important and I know that life will go on and sooner or later (sometimes later than I hoped) it will get better. It always does with time and I can adjust to anything life throws my way.
I know this is probably not the kind of response your looking for but I'm willing to listen if you need someone to talk with. Feel free to email me.
Good Luck! and take care of yourself
Sherra

Franquix's picture
Franquix
Posts: 3
Joined: May 2004

Lee-Ann: I'm in the same boat you are and I wish I had a happy ending to share but we're still working on having kids, too. I'm so, so sorry about the loss of your baby girl...I recognize all the emotions you've described.

Our son, Liam, was born 2 weeks after I was diagnosed with Hodgkin's stage IIIa and he immediately coded in the delivery room. He was rushed to a specialty hospital & underwent emergency open-heart surgery to save his life. The surgery statistically is supposed to have higher survival rates than Hodgkin's but he only lived 9.5 weeks before the added complication of chronic lung disease took his life. We buried him on January 3rd, 2004.

Everywhere we go my wife & I are plagued by the stigma of "that couple" who lost the baby & had cancer at the same time. People pretend our son never existed and only casually ask how I'm "feeling" since our experience is so foreign to them that they don't know what to say.

I've been in remission now for a month but today we found out that our first attempt at artificial insemination was unsuccessful. We have to try again in two months and can't get used to how long everything takes in the world of fertility clinics. All the waiting is further torture for us.

We're determined to have a healthy family, too. If by any chance you have any update on how you're coping since you originally posted this in July I'd love to hear it.

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