Caregiving and Making it Through Difficult Times

Cameron's wife was diagnosed with mesothelioma almost seven years ago. The prognosis is usually quite grim - the average life expectancy after a diagnosis is 3-12 months. With more than 6 1/2 years of caregiving and navigating the highs and lows of cancer treatment, Cameron has generously offered to share his perspective for the spouses, family and friends of women with gynecologic cancers.

Cameron’s wife was diagnosed with mesothelioma almost seven years ago. The prognosis is usually quite grim – the average life expectancy after a diagnosis is 3-12 months. With more than 6 1/2 years of caregiving and navigating the highs and lows of cancer treatment, Cameron has generously offered to share his perspective for the spouses, family and friends of women with gynecologic cancers.

My wife, Heather, has said on several occasions that she has no idea what life was like for me after she was diagnosed with mesothelioma. We’ve talked about this time in our lives before, but that simply isn’t enough to give her an idea of what I went through. With this article I hope to share more with her, as well as anyone else currently struggling through a similar situation.

Her diagnosis came only three months after she gave birth to our only child, a little girl named Lily. We were so happy and so filled with joy after Lily’s arrival, but all of that happiness and joy was replaced by fear and anger and uncertainty when Heather was diagnosed with cancer.

I remember feeling so many emotions. I was on the verge of breaking down, seeing the tears in Heather’s eyes and wondering how we would get through this, when the doctor’s words brought me back to reality. He was talked to us about making difficult decisions regarding Heather’s medical care. I knew this was just the beginning. I couldn’t help the fact that immediately following Heather’s diagnosis I felt so much anger. I was furious at the world for putting my family in this cruel and unfair situation. I was using profanity to communicate, even though I knew I needed to be strong for Heather and Lily. I needed to be their rock, their source of optimism. After a while, I learned to get a handle on my emotions and keep them in check. From then on I did my very best to be a stable source of hope and help for my family.

My days were difficult, however. I had to work, make travel arrangements for medical care, and take care of Heather, Lily, our home, and our pets. I wasn’t sure how I was going to get it all done. I learned very quickly that I often couldn’t, and that I needed to learn to prioritize. I also learned that I needed to start accepting the help that was offered to me by so many other people in our lives. We were very blessed to have those people in our lives, to make things so much easier on us. I was still overwhelmed, but they helped a great deal.

The most difficult period for me, and one that Heather says she cannot even begin to imagine, was the two months when she was away from me following her mesothelioma surgery. We sent Lily to South Dakota to be with Heather’s parents while she had her surgery in Boston. Heather immediately went to South Dakota afterwards to recover. I couldn’t go with her because I had to work. This wasn’t an easy decision, but it was necessary for my family.

I saw Heather and Lily only once during this time. I was able to leave work one Friday night and drive 11 hours through a snowstorm to see them. It was a quick trip. I had to get back into my car and drive the 11 hours home on Sunday so that I could be home for work on Monday, but I was able to spend one full day with them and it was the best day I had in those entire two months.

I learned a lot through this. I learned to accept help when its offered, and to never regret or second guess the difficult decisions that cancer forces us to make. It’s been six years since Heather was diagnosed, and despite the odds against her she is healthy and cancer-free. I can only hope my words help someone else going through a similar difficult battle with cancer.

Early detection saves lives – like mine

I had a sharp pain in my stomach, cramps like never before and spotting for a few minutes.

I checked with doctor — because at 62, no way. After different tests, she said “there is a protein and cell change in your uterus” and that I needed to see a specialist at Yale’s new Smilow Cancer Hospital.

They found that on a scale of 1-10, with a 10 being cancer, the cell changes were approximately a 7.5. They said research shows it would have turned had I waited to see a doctor.

I had to have a complete hysterectomy — a da Vinci did it. Pathology showed many flags to endometrial cancer coming, but it was removed before it completed forming.

The docs say I was very lucky. Ladies, if something is not right — see your doctor.

If your cancer was detected early, what symptom or “bad feeling” did you have that convinced you to get checked out?

Diane’s message: get your check-up!

I was diagnosed with uterine cancer on January 7, 2012. I had my surgery on March 5th, a total hysterectomy. I started my five-week radiation on April 25th and my last treatment was May 30th.

I did not see a doctor for a long time and knew for over a year something was wrong — the heavy bleeding, the break-thru bleeding and the pain. I was stage 2 going into stage 3. Women need to get their check-ups!

I am so lucky — I go for my 3-month check up on the 26th of June.

What symptoms were your first clue that something might be wrong?

Things happen for a reason

Amber with baby

Having you first child should be THE HAPPIEST time of your life. It was for me …. One week later the Devil tried to take that happieness away, but I WON the fight with him, AND cancer!

When I went for my 1-week check-up post-partum, the last thing on my mind was that cyst. I had lost nearly every pound I had gained during the pregnancy, I was a new mother, life was good for me. And then I walked into the room and after the “adoring of the baby” routine was over, my doctor said to me “Amber, I don’t have good news for you.”

Suddenly my mind traced back to a week prior to that when I was laying on an operating table while they were removing that stupid cyst and I was awake and alert but couldn’t feel anything and not thinking anything about what was happening because I was too focused on the fact that I was a Mommy to a beautiful, healthy baby girl.

When I heard her say “I don’t have a good news” suddenly that stupid cyst was the first and only thing on my mind. I knew. I knew exactly what she was going to say. All I could do was stare at my daughter sitting there in her car seat, perfect, asleep,  no worries in the world. And the tears fell down my face as I could literally feel my heart breaking thinking about the “what ifs.”

Two days later I met the oncologist specializing in gynecology that my OB had referred me to. With my family there to hold my hand, we talked about the situation, came up with a plan, and scheduled surgery for four weeks later to remove the left ovary and fallopian tube that had been affected by what is called a Malignant Granulosa Cell Tumor.

Typically the surgery would have been scheduled for much sooner, but due to the fact that I had just delivered a baby and my uterus was still enlarged, we had to give it time to decrease back to normal size.

Every emotion I could have been through hit me within those four weeks. But one thing that never changed, that still hasn’t to this day, one year later, was that all I ever wanted to do was hold my daughter and tell her how much I love her and thank God for her. I gave birth on February 8th, had the surgery to remove my left tube and ovary on March 9, and lived to tell it about it on my 26th birthday on April 10th! Those are 3 of my lucky numbers!

Along with the number 14, which represents the date March 14th which is when I was told that all biopsies from the surrounding tissues and lymph nodes taken during the surgery came back with negative results for malignant cells and I was officially in remission.

Although those were four weeks of terror and fear between the time I was told “you have cancer” and my surgery to remove it, I didn’t realize it, but I now know that I am truly blessed and extremely lucky. I have had three good check-ups with my oncologist for one year now with no signs of recurrence. I beat cancer without having to go through chemo or other treatments that most cancer patients spend half their fight on, and I am forever grateful for that.

I just think back now on how eager I was to have a natural, vaginal delivery, and thank God that my daughter was stubborn enough to stay high in the birth canal to make sure I had that C-section that resulted in them finding the ruptured tumor. I will forever be indebted to her for saving my life.

Is it crazy to think of a diagnosis of cancer as “lucky”?

 

Amber’s story, Part One

Amber with baby

Having you first child should be THE HAPPIEST time of your life. It was for me .... One week later the Devil tried to take that happieness away, but I WON the fight with him, AND cancer!

I was pregnant with my first child. A girl. She was stubborn already during my pregnancy. She was breech until I was 37 weeks and I was terrified of having a C-section. Finally she flipped at my 38 week check-up, but she was refusing to drop to push on my pelvic bone which would make me prepare for a vaginal birth by helping me dilate. Needless to say, her due date came and went.

She was due February 1, 2011 … born one week later, February 8, 2011. Londyn Averie. 8lbs 11oz, 19 inches long, born at 4:37pm EST by Caesarian delivery AND had two teeth! (Yes, she was born with two bottom teeth). She is my angel, my savior from cancer – I owe my life to my daughter. This is my story …

I was admitted into the hospital for labor induction at 5:00am that morning. I was prepared to have a natural, vaginal delivery. The Pitocin was started around 5:30am and the waiting game began. I started feeling contractions about an hour later, but nothing too intense. The Pitocin was increased.

Contractions were increasing, but still not enough to make me dilate or efface. Eventually there had to be an internal fetal monitor attached to the baby to monitor the intensity of the contractions. The nurses told me she was practically in my throat she was so high up in the birthing canal.

So after several hours and very intense pain between the contractions and the insertion of the internal fetal monitor, I was told I would have to be prepped for a C-section. The medications were administered, the doctors and nurses talked to us, the family said their prayers and I went into the surgery room ready and willing to FINALLY meet my daughter. I was told beforehand that it usually took a total of 20 minutes from start to finish. I went into the OR at 4:07 … my daughter was born at 4:37 … but I did not get into recovery until 5:30.

During the delivery the doctor had noticed internal bleeding coming from one of my ovaries. Then they had noticed the ruptured cyst that was causing it. The doctor informed me that she may have to remove my left ovary due to the cyst being so big, but that she was going to try to remove the cyst and save the ovary, which she was eventually able to do.

The 9cm cyst was removed from my left ovary and although they said it did not seem to be a suspicious-looking growth, it was protocol to be sent for biopsy. That was the last I even thought about the matter. I never was worried that it might be cancer.

There is no history of cancer that runs in my family. When I got to my room and got to spend that quality time with my daughter I was in 7th heaven. I couldn’t imagine anything wrong with the world in those first moments.

That was my first week …

When in doubt, check it out!

I was diagnosed with uterine cancer (serous carcinoma) in December 2011. I had a small bit of spotting and called my gyn doctor. She had me come in the next day. Biopsies were taken. Two days later I got the news. I had cancer.

Well, to make a long story short, I had surgery by a gynecologic oncologist on January 16, 2012. I was one of the lucky ones – it was contained to my uterus and had not broken through the muscle wall. I underwent a total radical hysterectomy and many, many biopsies during my surgery. I did not need any further treatment – no chemo or radiation.

I am being followed closely every 3 months. I am back to work and feeling great. I do believe that the attention paid to my body i.e., the spot of blood in my panties and the immediate call to the gyn doctor, saved my life.

So I am asking all you ladies…pay attention!! Even if you don’t think it is “anything” call your doctor…let her/him decide. It could save your life.

Long term survivors give me hope

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Sandie is "just a normal kid of 55" who lives in Fogelsville, PA. Sandie enjoys reading, learning, laughing, and has a life-long addiction to bingo. She's a mother, grandmother, and cancer survivor.

Another thing that has gotten me through is stories shared with me by total strangers. I spoke to a woman who told me she has had three bouts with cancer over a 12 year period, and she was diagnosed at Stage 4. And so many others who have told me they are 15 year survivors, 11 year survivors, 30 year survivors. That is my hope. If they can do it, so can I.

Today, it’s two years later, and if I were to sit with a newly diagnosed patient, I would hope they could gain confidence and inspiration from my journey. What I want them to know, and what I want them to see is, I have been through two rounds of chemo and one round of radiation. I am not frail; I am not weak; I am not withering away. Cancer can be tolerable. Cancer is not the end, it’s a beginning.

What advice would you give a newly diagnosed patient?

3 phone calls made all the difference

When I first heard my diagnosis of cancer, I automatically went into a depression. I didn’t consciously tell myself that I was depressed, it just happened naturally, without any thought or pretense.

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Sandie is "just a normal kid of 55" who lives in Fogelsville, PA. Sandie enjoys reading, learning, laughing, and has a life-long addiction to bingo. She's a mother, grandmother, and cancer survivor.

Crazy thoughts went through my head, including funeral arrangements. When I die, are they going to dress me the way I want to be dressed for eternity? Will they play the music that I would prefer at my services? If they are going to cry over me when I’m gone, why aren’t they calling me and expressing their concern while I’m still here? I really felt alone.

But there were phone calls from terrific people that really helped me through this.

A woman I work with suggested I have my hair cut short and close to my head so it’s not so traumatic when it starts falling out. Another friend of mine had her cousin call me. I didn’t even know this lady, but we shared a disease and we shared a doctor. She explained what she had been through, and how the medication made her feel, and how she needed to change her diet in order to cope with it. It was practical advice that I really needed. Another woman taught me about the power of prayer. Three simple phone calls, but oh so powerful.

Whose call made a difference for you?

Finding the positive

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Sandie is "just a normal kid of 55" who lives in Fogelsville, PA. Sandie enjoys reading, learning, laughing, and has a life-long addiction to bingo. She's a mother, grandmother, and cancer survivor.

I believe there is a positive in every negative. For me, the negative is cancer, but I have experienced a lot of positives.

My doctor and his entire staff of nurses – they genuinely care about their patients, and I, for one, truly appreciate that.

The nursing staff at the Infusion Center – angels, pure angels, their care and compassion go above and beyond their responsibility.

My Relay For Life family – it makes my heart smile to be with these survivors and supporters with such a PASSION for supporting cancer patients, celebrating survivors, and reaching for a cure for all cancers.

How about you – what’s positive in your life?

Staying positive

Sherri lives with her loving husband, Tom, in Bethlehem, PA. She enjoys spending time in the garden and starting her own plants from seeds. She also enjoys spending time traveling with her husband, spending time with family and friends, and going to the local baseball team games.

Since I was first diagnosed with cancer, I have to say that it has obviously changed my life in many ways. The physical changes were expected. However, this experience has helped me look at life in a totally different way.

The only way that I have gotten through this was keeping a positive attitude. I have to thank my loving husband, family, and all our friends who are family to us. I have relied on my faith as well which has kept me grounded and secure. I have been blessed with a wonderful doctor and his staff which have been most helpful.

I find that keeping a sense of humor helps a lot. When I first lost my hair, the hardest part was when people would stare at me. After a while, I would learn to make jokes by telling them that I worked as a living mannequin at the local department store. It made me laugh, and it was a polite way to remind them not to stare at someone who just lost her hair to chemo.

Another way to keep your spirits up is to always have something to look forward to, even if its promising yourself to watch your favorite show or read your favorite book. Surround yourself with family and friends who are positive and treat yourself to some fun time, you deserve it.

What do you do to keep your spirits up?