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Our Story, looking for advice and support.

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  • Our Story, looking for advice and support.

    Hi there,

    I'm new to the forums and have been lurking for a while. The amount of support I see on here is overwhelming, so I thought I would post my story too. I apologise but this will be a long post. My husband is 34 years old. He is getting treatment at Overlake Hospital in Bellevue (near Seattle) WA.

    I moved from Ireland to the U.S. on February 28th to marry my now husband. His bachelor party was the weekend before my arrival. It was a weekend away type of thing. Towards the end of the bachelor party he noticed that his left testicle was swilled really really big, but no pain. On the Monday after the swelling has still not gone down and I urged him to go to the doctor. He sent him straight to the hospital for an ultrasound. The urologist took a quick look and immediately suspected a tumour. The orchiectomy was completed the next day. A few days later I arrived in the U.S.

    We got the pathology back a week or two later. It was cancerous. Seminoma. There were no blood markers though. Just one thing was marginally off, but not enough to cause any concern. The docs said that all be would need is some radiation in that area and then we would be good to go.

    We got married the following week.

    Then we went for the CT scans. They found a just under 5cm mass in a lymph node beside the kidney and a major vein. This was not biopsied. He had a power port placed on his right chest a few days later.

    He's been so strong. The diagnosis hasn't really gotten him down or depressed at all. He is more angry or annoyed about it. He always does have a very cool outlook on things. He os a very good communicator though so I fully believe that mentally he is doing well. I'm definitely the one that is more emotionally effected by it. I'm anxious and freaking out all the time.

    The following week we started chemo. Cisplatin and Etoposide for 4 cycles.

    It's been hard. The chemo has really been tough for him. During the first cycle there was a lot of pressure in his head, stomach and bowels. Headaches. Tiredness. In the recovery weeks he hit a fever several times. They decided to give him Neulasta shots after every cycle to boost white blood cell production but didn't tell us about taking calritin in advance.

    The second cycle itself was actually a little better. However on the second last day of it my husband had really bad neck pain on the left side (not the side of the port). After lots of testing an ultrasound revealed a really large clot in the main artery. It was large and chronic (so not a very new thing) but not completely obstructing. Now I inject my husband twice a day with lovenox (anti-coagulant) shots. The flowing Monday we got the Nulasta shot. We thought everything was going okay. Some nausea, weakness and headaches. But not the worst. But that Friday night my husband had the most excruciating bone pain. He was twitching and writhing in pain. We had no idea what the cause was. We had to call the on call doc. They explained it was likely the Nulasta shot. After several strong pain meds and a few days later the pain went away. From that point on My husband is taking Claritin daily.

    I believe his hair, nose hair, body hair, eye lashes and all began to fall out at this stage.

    The third cycle whiped my husband out. No energy. No strength. Super strong nausea, but no vomiting yet. We got home that weekend. He wanted to shower and when he got out he asked me for help, he was feeling dizzy. I helped him out of the shower and thank god I was holding on to him, he collapsed. It was a fainting seizure type thing where he stopped breathing, his eyes were wide open but not responding. I'm not sure how long it lasted, probably half a minute at most, I was shouting at him to wake up, eventually he threw up and immediately was alert and normal. But he didn't know what had happened. I drive him straight to the ER, and the same thing happened again in the lobby. They did loads and loads and loads of testing. The next day they ruled out brain toumor, seizures, epilepsy. They put it down to low blood pressure and a Vasovagal fainting episode. I think that has scarred me the most. I thought he had died for a split second.

    The fourth and last cycle was bad too. The nausea got stronger and my husband was throwing up. He was very weak, going to the bathroom and back would whipe him out. Or just a few stairs. But the vomiting was the worst. We have 5 anti nausea meds, none seemed to relive him. This continued for a few days after the last cycle. The last chemo day was the 10th of June. So about a week ago. He is only improving slightly. He vomits only every other day now. The nausea is mostly gone. The main issue is the weakness. He is so weak. And his arms and legs have little strength.

    Does anyone know what the cause of this could be and how long until he should feel strength again?

    Overall he cannot work the days he has chemo and usually the week after he also needs to recover. The following week he can work a little and it's back to chemo again. Since the effects of the chemo have gotten worse from cycle to cycle he has been able to do less and less.

    Our usual oncologist has been out of the office so we have had another one for the time being. So far everyone has said that this is very curable and always has been positive. No one had really been too negative. But this new oncologist said that soon we will see if the tumour has shrank or grown. She said it as if that both were equal chances, which freaked me out. No one had ever mentioned that possibility before. The point of the chemo was always curative. So I asked her to look into the statistics of the treatment and let me know the likely hoods of what outcomes we can expect. And she said she would and never got back to us. She has done that a few times with different things. What doctor does that?

    Our final scan to check what is going on with the mass in the abdomen is on Monday and we get the results on Tuesday. I can't sleep anymore. What is the chance that the tumour has grown? Is that unlikely? What is the likely result? And how likely is it?

    Since my husband that those fainting/seizure type episodes I haven't been able to sleep. Or think about anything else. All I do is watch him to make sure he doesn't fall, or stop breathing, or get sick. I worry all night about the cancer spreading, or him not recovering from chemo, or me getting ill. I usually don't fall asleep until 4 or 5 am. It's just never ending. Does it get better? Am I the only person who freaks out like this? I don't let him see this part of me a lot.

    If anyone has advice or support to offer for any of the questions I had it would be super appreciated.

    Nelly x