May 29, 2001
Hello, my name is Pam Hlubek. After reading others shared stories, I wanted to share our story. Please know that I in no way intend to scare or discourage anyone who may be going through this terrible disease, but to indeed educate others.
My husband and I are both 30 years old, living in Jacksonville, FL with a 12 year old daughter and a 2 year old son. Just your regular everyday middle class family never to have been struck with any type of tragedy. All things considered, we've been very lucky in life so far.
Our lives changed forever one cold day in December of 1999. My husband came home from work and confided to me that he was in pain, with the pain coming from his right testicle. We examined it ourselves and found nothing, no lump, no swelling, just plain nothing. Figuring it to be a pulled muscle, we left well enough alone. This went on for 2-3 days, still with no sign of any problems. The Pain went away, PHEW! Just a pulled muscle.
We heard no more from the testicle for about 2 weeks. This time it was very painful and swollen. I made an appointment with a urologist - no I take that back. I got out my primary care providers book selected a "NEUROLOGIST", explained my husband had a swollen testicle, and was politely informed that "you must think you are calling a "UROLOGIST." Embarrassed by my mistake I swiftly hung up the receiver, and referred back to my provider list to find a Urologist. The doctor I selected luckily had an immediate opening. Mike went that very day, and PHEW! Again it was just an "Infection" walking out an hour later with a prescription for antibiotics. Life was good. After 2 weeks of antibiotics, the swelling tripled in size. I knew something was not right.
I got out my old trusty provider listing again and selected a new urologist. He saw Mike and almost immediately suspected testicular cancer. He did an ultrasound and confirmed his suspicions of a tumor, all within an hour. No time wasted, he scheduled Mike for an inguinal orchiectomy surgery to take place the next morning. Keeping in mind all the while, neither of us had any clue what testicular cancer was. We were still thinking at this point it's some kind of cyst. Surgery went well, but the doctor pulled me aside while Mike was in recovery, and confided he suspected cancer. We would know in a few days once the pathology report was back.
Let me tell you, and in reading other stories, we all know what it's like to play the waiting game. Knowing the whole time what the Dr. suspected, but never letting Mike know. I felt so totally alone.
Well, we encountered our first streak of "Tragedy". The pathology report confirmed indeed it was cancer. It was non-seminoma stage I. We were refereed to a wonderful oncologist who explained our options. 1. RPLND or 2. Chemo. After talking about the two options, he decided to opt for the chemo. This was much to my dismay; I personally was pushing Mike to have the RPLND done. [Editor's note: It is impossible to determine the stage of a testicular cancer solely from a pathology report. Moreover, chemo typically is not an option in clinical stage I patients and surveillance typically is an option.]
He was to have 2 courses of chemo, which included: Cisplatin, Bleomycin, and Etoposide (BEP). Week 1 did not go well. After the 3rd day Mike became violently ill. He became so ill he had to be hospitalized for dehydration. Keeping in mind, he was prescribed an anti-nausea medicine, but when you're that ill and can't keep anything down, then your med's become obsolete. He stayed in the hospital, made a speedy recovery, and promptly announced to everyone that he "Was Done".
I knew he had FIVE more weeks to go, and indeed, he was not "Done." After much debate, he stood his ground that he would not be returning. His justification for this rash decision? Well, his reports looked good and didn't show signs of cancer, however that does not mean it's not present the doctor explained. Mike would here nothing of it, he felt cured.
The doctor gave his opinion (to keep on with treatment) but could do nothing further to make Mike change his mind. The doctor did suggest blood work and chest x-ray every 3 months for at least 2 years. Mike was, of course, game for this. This went on for about 9 months (the routine tests) with everything coming back normal. So eventually Mike decided he didn't even need the tests anymore.
Six months had gone by with no routine test and guess what? He starts having bad pains in his abdomen. Well, I wasn't going to put up with the nonsense anymore. He heard a few choice words from me, and I concluded my speech to him with the date and time he was to report to his oncologist. He agreed he needed medical attention.
WHAT WE FOUND:
Now we are at 1 yr. and 3 months when we finally met the doctor again to discuss the pain in the abdomen. We start off with routine blood work and chest x-ray, and CT scan. After playing the waiting game for a few more days, his office calls us and the nurse said the doctor wanted to meet us both the next day. I can do a pretty good job at reading between the lines; I knew this could only mean one thing.
This takes us to March 19, 2001. Sitting in that all too familiar doctors office waiting for our turn. Neither of us speaking, just waiting, waiting, and finally it's our turn. It all seems like such a blur, and almost unbelievable, but what we are now faced with is: 3 nodules on one lung and 1 nodule on the other. And that's not all, a quarter size tumor in the abdomen wall. Ok what now? First and foremost a biopsy on the tumor, and chemo is already in order because of the nodules in the lungs. The doctor explained the regimen would be the same of BEP for 4 courses every 3 weeks and Bleo on the off weeks, once a week. While the nurse schedules the biopsy appt, we sit in silence.
Mixed emotions running through my head. Should I have made him keep up his treatments the first time? What could I have done differently? Do I get real mad and say "I told you so"? Finally I opted to hold him and assure him we would get though this!!!! As if the emotional part of this isn't enough, we are now faced with him being out of work for 4 months. Like most families, we are a 2-income family. So this naturally is going to be a big problem. Of course, this is the least of my worries at this point in time. We had a scheduled appt for the following day for the biopsy. A few more days of the waiting game (which I'm becoming a terrible contestant) and we learn, yes, the tumor in the abdomen is indeed that terrible "C" word.
Chemo is to start the week of March 26, 2001. After his terrible experience the first go around the previous year, Mike opted to do his treatments in the hospital, so he could have intravenous nausea medicine, and he thought it would be easier on the children and me.
HERE WE GO AGAIN
CHEMO WEEK 1: We are admitted into the hospital March 26 to start week one of his treatment. The week goes extremely well. He was happy with his decision to do treatment in the hospital, and he at least knew what to expect this time around (although it doesn't make it any easier). They have a wonderful brand new anti-nausea medicine on the market called Anzmet. This is a true miracle drug, he didn't vomit not once. Did he still feel nauseated? Yes, but not near as bad. They also had him on Ativan, which helped relax him and made him sleep a lot. God Love him, my father bought him a Playstation 2, and we bought all the necessary cords to hook it to the hospital TV, and he was just so drained he was only able to play it twice.
Week one is under our belts and we head for home. After a few days, he's feeling somewhat better. He experiences a little bit of confusion and a tinny sound in his ears and says his body feels hollow. For the most part he bounced right back. Week 2 comes and we go for the Bleo in the doctors office. Other than the nurses having to really hunt for a good vein, the visit was uneventful.
On his 2nd week after chemo he wakes up, with the left side of his face so terribly swollen and in terrible pain. We were scheduled to go for Bleo, so once we got to the doctors we realized he had a 102º fever, no doubt caused by the tooth pain he was having. He went ahead with scheduled Bleo, trying to get the fever down all the while to no avail. The doctor decided he needed to be admitted to the hospital. While doing the routine lab work he was found to be neutropenic (low white blood count).
Once settled in the hospital, our doctor called an oral surgeon in for a consult to look at the tooth. They come to the conclusion he has an abscessed tooth that must come out. [Editor's note: It is always a good idea to see your dentist before starting chemo to ensure that there will be no problems like this during chemo. If you are not careful, you can lose ALL your teeth!] Well it's not as simple as it seems. There's a threat that the infection may seep into his blood stream. So after a few days of antibiotics and Neupogen (to bring up the white blood cells) he's ready for surgery.
They took out 2 wisdom teeth and the abscessed one, being very careful to pull anything that looked like it may be a threat in the future when his immune system was down. He recovered nicely and by now its time to start the 2nd course of chemo, so here we go again. We go into the 2nd course and things are still ok. We shaved his head, it was time. He looked so forward to his evening visits with the children and me.
By the end of his second course (and being in the hospital for 12 days) he was good and ready to come home. Each time we leave we are armed with an Rx for ativan and anzmet. Let me tell you anzmet is very expensive like $78 per pill expensive, but insurance seems to carry the cost of it, and it works, it really works. Again, a few days to bounce back and we are doing well for the most part. The next 2 weeks were uneventful, doing the Bleo on the schedule Tuesday of the week, and just waiting for the next go around.
CHEMO WEEK #3
Well it's time again to go to the hospital, up we go to the oncology ward. It's almost like home. I'm sure it seems that way to Mike. It's much more familiar to him then it should be, knowing all the nurses at this point and just knowing the drill all the way around. This cycle was quite challenging. First his veins kept giving out. They were just worn out, had had enough. We talked briefly of a portacath, but nothing came of it. Mike just couldn't take anymore of anything that hospital had to offer. Then we were faced with Constipation, poor guy had been constipated now for 9 days. They were able to help him with that problem, so we finished off the week and headed back home on our way.
The 2nd week out of his 3rd cycle, he had a terrible shortness of breath, and terrible pains in his shoulder and chest. So off to the ER we went, after hours of examining and lots of test later they come to the conclusion he had pleurisy of the lungs. So a few Rx later, we went home.
PROBLEM #3 (yes there's more)
Ok this week, we come up with a different situation. While in the doctors office Tuesday for his scheduled Bleo they learn he's neutropenic yet once again. He had a count of white blood cells of .09. This is dangerously low. They do his scheduled Bleo and schedule him to come in for the next 3 days for a Neupogen shot. Well later that evening he start feeling ill. I checked his temperature and it's 103.2!
Bleo can make you a little warm, but this was not a little warm. I phoned the doctor (please note I think his answering service even knows my name by now) and he informs us to go to the ER immediately. So that we did. They decided to keep him, so they could inject antibiotics immediately and watch the fever. Four days go by before he was able to come home. At least he got to spend Memorial weekend at home.
CHEMO LAST WEEK:
Well its now May 29,2001 and we are off for our very last week of chemo. Mike toyed with the idea of doing his last week in the doctors office, but decided he just felt more comfortable continuing them in the hospitals care. Today is Friday, and he will be completely done with his treatments tomorrow. I can't tell you how happy we are that our long journey is almost over.
WORDS OF WISDOM!!!(EMOTIONALLY)
Please don't give up!!! The doctors are the experts here, 2nd options are always good, but please learn from our mistake: If he had taken all his chemo 1½ years ago, then he probably wouldn't have had a recurrence in the first place [Editor's note: This is possible, but I would still advise against doing the adjuvant protocol. Surveillance or RPLND are usually better options]. Mike will always regret that he gave up, but we have to live for the future and can't look back. We just thank God everyday he was able to have a 2nd chance to go back and fix his mistake.
This is no-doubt a terrible time for the patient and families of anyone having to go through this type of illness. Just take each day at a time, and pray to God for the strength to get through. Like my doctor said, "It's a tragedy for anyone to get cancer. But a look on the bright side, testicular cancer, if treated correctly is usually 100% curable." I feel in my heart we have beaten it this time.
Always encourage your loved one going through this horrific time. I would tell Mike daily how proud of him I am and what a "SURVIVOR" he was. Your patient will tend to get "crabby" and down on life. Don't let this bother you, you have to stay strong for them as well as the rest of your family (your children) I would tell Mike "I don't care to hear you non-sense, talk, I don't care to hear you pity yourself, we don't have time for this, get yourself well and let's get on with life, we don't have time for this mess. Believe me it's not harsh at all; it makes them want to fight even harder. I am a true believer a BIG part of the healing process is all in the mind of the patient. If they are fighters, and have the will power to fight, it can be just as powerful in the healing process as the chemo.
WORDS OF WISDOM (FINANCIALLY)
Our families have been truly wonderful doing our time of need. Between them all, they were able to pitch in and pay daycare, electric, phone, water or whatever needed to be paid. They truly have saved our lives; I never would have been able to handle it without them. It sure helped Mike to concentrate on his getting well knowing his family was being taking care of, and knowing he wouldn't come out of recovery to be hit in the face with a stack of bills. Thank you so much to our wonderful families, we couldn't have done it with out you.
Our friends were just as much help as well. I have wonderful friends that would make us meals, watch the children, or just talk whenever I needed someone to talk to. You may have gathered by now, I'm a strong person. But I'm also human as well, and let me tell you, juggling working 9 hrs a day, going home cooking, going to the hospital, coming home bathing the children and getting clothes ironed for the next day and lunches packed and etc... it's been the biggest challenge of my life.
At times I felt as though I couldn't go on, and did I ever lose it? Absolutely! After the children went to bed often times I would ball up and cry and ask God "why"? But I know why, it's all part of life, and we have definitely learned through this whole experience, to be stronger, and take whatever is thrown our way. Life is often times taking for granted, and you will learn fast, life is a privilege, you have to earn your right to be in this world, and live every day to it's fullest.
Also check in your local town for charities that may help. Here in my town there just wasn't much available, they claimed I made too much money (please!!!), but for the most part there were a few organizations that offered help. The American Cancer Society offers a 1-month emergency assistance, as well as reimburse on you gas mileage to and from treatments. Every little bit of help, HELPS. Call them and register yourself, they are wonderful, they will send you literature about the type of cancer your dealing with, as well as lists of support groups in your area.
I would like to end by saying, I could never had made it through this tough time without the Testicular Cancer Recourse Center, it has truly helped me to cope and to read other stories, it makes you feel not so alone. I wish everyone out there the very best in life.
And of course to my wonderful husband. We love you honey, and we are so proud of you, you are a true survivor, you will always be our hero. Thanks for your will to survive, and allowing us to spend the next 50-60 years with you.
God bless and take care.