Do you realize how important this info is to a spouse of an OC fighter?

Welcome Big John...

Men are most welcome here altho we don't get too many. It is admirable that you want to be of help to your wife in this way. She's a lucky woman...at least in that way!

Most chemo is cumulative and so it may be that side effects will increase over time. That said, everyone is different. 

Good luck to you and to her. please encourage her to join this site herself at some point. It can be such a positive place for survivors to be.

Best,

Susan

1st "Dear John ltr"~Hello "BigJohn" Welcome 2 our "our world"

 

 “Dear John”

 First off, you’ll never know how long I’ve been wanting to “meet you.”  But this CSN SECURITY DEPT. just doesn’t want us to meet I suppose!  That said, consider this a “get-acquainted” chit chat. 

 We have much in common.  Having been “really” happily married for 54 years, I never dreamed that I would be writing a “DEAR JOHN” letter!  But alas it looks like I have met a new fella in my life, and it was Friday the 13^th when I first read your letter.  Hhhmm I hope that’s not a bad omen though.  Now I’ve been forewarned about meeting men “on line”, but I suppose as long as we don’t set up a meeting place everything we say will be open and above board.  My husband has approved this letter and your wife will probably read it as well. 

 This is the first time I have written to a gentleman on this Ovarian Cancer site, but I’m used to talking to men on the Esophageal Cancer link.  So if you click on the picture of my husband and me, you can read more “about us.”  I’m actually writing on 3 sites, Peritoneal Cancer, Ovarian Cancer and Esophageal Cancer. And I will be posting a separate letter on this site, in addition to what I write to you regarding my own experiences and what I learned when taking my first Chemotherapy treatments in 2013.  But I’ve started this letter to you, and should have finished it before now.  I see that your wife has had her second treatment today.  Ooops—by the time this letter ever posts, she will probably have had several.  And by the way, what drugs is she taking.   By now, she should be having some cumulative effects from the treatment, for good or for bad.

 You see my husband and I have a unique relationship.  It gives new meaning to the biblical explanation of the joining of one to another when they are wed…”and the two shall become ONE.”  I make no apologies for choosing to believe the Biblical version of how man came to be, and the story is told “in the beginning.”  So bear with my personal interpretation, it blends in with the story of my husband and me.

 In my “paraphrased version” God, the first anesthetist, put Adam to sleep and performed the first laparoscopic surgery!  He removed one of Adam’s ribs and created a woman.  Adam immediately fell in love with her, and vowed to give her anything she desired.  And so the “two became one”. Well, John, despite many women’s attitudes of TODAY, that they can “do very well without the aid of men like a “William” or a “John”, I’m not in that category.  In fact Eve wouldn’t be here without ADAM.  (Today is a bit different—many women would quickly exclaim…”And Adam wouldn’t be anything without EVE!”

 Now John, I don’t want to get “into the weeds” with this story except to say, “When I get to Heaven, I’ve got a few things to say to Eve.”  For one thing, my husband has worked by the sweat of his brow to make a living for us, and the terrific pain I experienced in childbirth on 3 different occasions, is something I could have done without!  I practically “delivered” on the table before they gave me anything for PAIN.  (But then again I have to admit that there have been plenty of times of disobedience in my own life, so I can’t blame it all on our first Dad and Mom.  But I hasten to add, God stands ready to forgive me when I admit my guilt and then I’m back in HIS good graces.) 

 Okay, I say all that to get back to the “two-became-one” part.  There’s more than one way in which a married “couple” become “one”.  Intimacy being one but most important are the emotional ties between the two.  (Those are the “ties that bind.)  As a married couple, my husband and I have gone through different phases of life, as have you, I am sure.  When we were young, we had no difficulty in repeating our wedding vows, and promising to love each other “in sickness or in health!”  And the “till death do us part” was a given.  Little did we know that the “strains in our life” would bind our hearts together closer than ever before.  Well in our early youthful years we only knew others that were “sick”, but we were healthy.  Sickness never entered the picture.  Well, you know there was a “headache” and a “hernia” now and then but nothing to complain about.  Did we take wellness for granted?  Well YES.   That is until “sickness” made a “stealth attack.”

             This is where cancer entered our little “Garden of Eden”.  My husband and I already had a good relationship.  Although we’ve had some disagreements at times, but nothing worth losing sleep over.  It never “came to blows!”  Even though we weren’t “rolling in dough”, he never fussed about how much money, I, the modern-day Eve, spent.  I laugh and say, “Long ago we made an agreement. He would make the money—I would spend it.”  Moreover, I would take care of the inside of the house, and he would take care of the outside.  That has worked well for 54 years. 

 Believe it or not, I had never heard of Esophageal Cancer until 2002.  Never did I expect that something as small as a hiccup be something as big as Esophageal Cancer, Stage III in 2002 in the case of my husband, William.  So our hearts sank.   If it had been Stage IV, (the point at which the cancer invades another major organ as well), I would be writing this letter only as “EVE the widow!”  Incidentally, Esophageal Cancer is the fastest growing cancer and it affects mostly men.  Most EC Stage IVs have a very short life span. 

 In the case of my husband, after he had an Endoscopy, our Gastroenterologist called me on the phone the next day.  He said, “This is Dr. Ryan.  I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  Okay I think you can relate to that moment in your life when you learned your dear wife had cancer.  So I don’t need to try to explain those earth-shattering moments.  But I began to research that cancer as soon as I learned how to spell “Esophageal” and pronounce the word “Endoscopy” correctly.  That earth-shattering moment gave new meaning to the biblical words—the “two-shall-become-one”.  (Genesis 2:24)     

 My husband and I bonded in an even deeper kind of union.  We joined in the battle to survive.  I always said, “When William (aka Bill) has cancer, I have cancer.”  He had an Ivor Lewis Minimally Invasive Esophagectomy May 17, 2003 at the University of Pittsburgh Medical Center.  He is still being tested on a regular basis, and thankfully is still in remission.  So this May 17^th, was another special celebration.  Since there’s no cure for Esophageal cancer, our oncologist prefers to call it “remission” instead of a cure.  We’re fine with that, and we truly thank God for all these “extra” years together.  We hope you will have a similar successful story with “your lady Eve!”   

           Back in 2002, I became a “caregiver” for the first time since our “two-became-one moment” 54 years ago.  Now you and I both know what it’s like to assume the “giving” role of caregiver.  Then in 2012, Bill and I abruptly “changed chairs!”  My diagnosis with Peritoneal Carcinomatosis and Ovarian Cancer, Stage IV was a complete surprise.  Suddenly he became the “caregiver”—I became the “patient”.  The two of us have experienced a deeper love for one another than we had ever known before.  We truly have “become one” in a new and different way. He helps me in every way.  So now that’s my preface to other remarks that I will make regarding the new relationship between “your wife, the precious patient, and you the caregiver.”

             First, may I ask, “Who are they?”  Hopefully you are being treated at a major medical facility.  And hopefully, you have had a 2^nd opinion.  Misdiagnoses are common with all kinds of diseases John.  So I hope you’re totally satisfied with your wife’s medical team.  You said “they” were going to analyze the fluid that was drained from her lungs, and then they would know if it was cancerous.  You said it would either be a Stage III or a Stage IV if the fluid tested positive for cancer as well.  Have you heard the final results?  If you shared that with us, I missed it.  So what is your wife’s final stage as of now?

          During my Cytoreductive Surgery (CRS), I had a good amount of fluid drained from my lungs as well.  However, I had already been diagnosed with Stage IV OC at that time, so there was no “guessing” as to what it might mean.  My advice to you is, “Don’t just wait until “they” tell you what it is.”  Ask lots of questions.  You know “they” throw around a lot of big words that we’ve never heard before.  We can appear smart at the time and ask no questions.  Then when we arrive at home, we can ask each other, “What did he say, and wonder what he meant by that”?  Being “dumb” is never “smart” where cancer is concerned, especially when I’m the one with the cancer.  Now I know there can be a time of shock, bewilderment, and many “discombobulated” moments, but little by little one becomes accustomed to a new way of life.

           As far as the stages, I will give you a reference below, and Lord knows I hope I won’t get the same old SECURITY MESSAGE that has blocked many of my postings for at least 3 weeks now.  Sometimes the message will transmit, and at other times it will not.  Now I must be able to give references to substantiate my searches.  I’m not a doctor, and I don’t want anyone to think I possess the intellect to know all about everything.  But I do thank God for the Internet.  Without this great reference source, I would be “operating in the dark” because my doctors certainly can’t answer all of “Eve’s” why questions.  Doctors do have more than one patient!

         Both my husband and I are amazed at how many will not research their own cancer, and depend totally on what they are told by “them”, meaning the medical doctors.  Now we’ve come to know that usually a doctor will only tell you what you ask about, and they are not usually “detailed oriented.”  Some of them lack “patience” when dealing with their “patients.”

           So it will fall to you to find out all you can about Ovarian cancer.  I usually start a search with a question or statement that I put on Google and then put UPMC as the last 4 letters.  That way, I will be able to see what UPMC (University of Pittsburgh Medical Ctr.) has to say about it.  From there I can branch off into other reputable medical facilities that also know about the same subject.  Mayo Clinic is always a reliable site, and the NIH links as well, and the names of well-known hospitals are safe places to search for info. 

 Now along the way you will encounter many “false” remedies, pay no attention to those sidebars that advocate “scorpion venom” as a cure for what ails you!  Moreover, verify anything that I say by discussing it with your doctors, because I am not a trained physician.  Albeit, I am a patient and a caregiver rolled into ONE.  I can only share my experience with you and your wife.  You can compare similarities, although each one of us will not respond to OC treatments in the same way.

           Now as to her first chemo.  Since chemo is cumulative in effect, she may exhibit few changes in her very first treatment.  My treatments consisted of six Carboplatin/Taxol sessions, each one at 3-week intervals.  (I’ve actually had 2 different chemo sessions- one in 2013 and one in 2015.  Both times the TAXOL gave me a “haircut” by the beginning of the second week! So your wife may get a haircut along with the “cleansing treatments.” So if that happens, don’t despair, it’s only hair! But should her hair become “thin” or “loose”, she might want to save some strands of it in case she wants to purchase a wig.  Then it could be a near-perfect match. 

 In the middle of my schedule, a CT of the chest, abdomen & pelvis, was ordered to evaluate the progress of the treatments, or the lack thereof.  Unlike your wife’s experience, my first treatment was a “near-death” experience in which my whole body turned “blood red” (according to my husband) and my whole spine started jerking like a jackhammer.  I felt faint, weak-kneed and almost fainted.  (My body said, “I’m having none of this!)  This happened within the first 3 minutes or so after the chemo infusion began.  The nurses frantically disconnected the chemo med and started running something else through my medi-port.  When I regained my composure, and breath of life, I said to the nurse, “I thought I was going to die.”  She said, “Well, I won’t lie to you.  We have coded some patients.”  She may as well been truthful, because I felt my life’s blood was draining from me, and certainly I felt like the breath was leaving my body.  I was in the clinic that first session from 7:45 A.M. till 7:00 P.M.  Incidentally, so was my oncologist.  He didn’t leave until I did.  From that treatment on, I was given more preparatory injections of different types of meds before the actual “hard stuff” started to run through my veins.  So kudos to the way your wife was prepared properly for her first chemo injection.

          Now after my initial harrowing experience with chemo, for the first week I felt no difference.  But by the second week I had begun to lose my hair which TAXOL treatments can do.  So don’t be surprised.  But your wife’s hair will return after the treatments are over.  Let’s just hope her hair grows quickly.  Meanwhile, I have purchased quite a collection of wigs, 3 to be exact, plus a “halo” of hair, plus a set of “false bangs.”  They have served me well.  And at home, I’ve just gone “bald”.  Hey if I can look myself in the mirror, others can see me as I really am.  After all beauty really has two components.  One is strictly superficial, although it’s always nice to be “pretty”, but the other is the “inward beauty” which is to be coveted far more.  So I just said to myself, “Get over the hair loss—it’s no big deal.” And it hasn’t been.  My soul is at peace with God and that’s the key to my ability to face this whirlwind.

          So my experience began with a visit to the ER.  Then the CT results that indicated I had many large tumors floating around in the Peritoneal fluid in my abdomen.  A 2^nd opinion and exploratory surgery would reveal cancer in my ovaries as well, and “not ready for any kind of surgery” at this point.  Chemo was ordered, then a re-evaluation of its efficacy would be necessary prior to becoming a candidate for Cytoreductive Surgery.  In that surgery I would have all “non-essential” organs removed from my abdomen.  This was never intended to be curative, but would help to prevent further spread of the cancer.  

 Now “Big John”, hopefully your wife will have few ill effects.  Most people I know who have had chemotherapy have side effects.  However, the amount of side effects one experiences has no relation to the effectiveness of the chemo circulating within.  Fatigue is a constant companion for many, attested to by how many patients limp along with a cane, or are being pushed in a wheelchair when I go for my regular oncology visits. I couldn’t walk the distance of the building without being pushed in a wheelchair.  That’s the way it was for me.

 Frankly, most patients do not experience noticeable results from the very first treatment.  BUT…chemo is cumulative, and I found that my treatments took more “out of me” as each treatment went by.  It was not until 3 weeks or so after my 6^th (last) treatment that I felt anywhere near normal.  And I have never regained full energy. 

 The best thing I can do is offer you some reputable web sites that accurately explain the stages and treatment of Ovarian Cancer.  Then you can feel confident that you know what to ask the doctors.  And by the way, I have a big calendar on which I make notes.  If I have a pain in a certain place one day, I jot it down on the day it is happening.  Often the doctor will want to know “when did this pain first start”.  Based on what I tell him, he may want to order a scan.  I also keep a record of the CA-125 tumor markers.  I monitor my weight too.  Also, I keep a record of the doctors I go to and what treatment I had.  That’s a question each new doctor will want to know about.  If I am prescribed a medication, and it doesn’t agree with me.  I make a note of the name of it as well, and call up my doctor and ask if there is another med I can take instead.  Naturally, if I have a persistent pain, my oncologist wants to see me right away, and he always works me into his schedule. 

 Okay John, I’ve kept you a long time.  Below my name are some web sites that I’ve found helpful.  Naturally, we hope your wife is the exception to the rule, and feels no ill effects from the chemo.  You and your precious wife are “in it together”, and I know you will make the best of a not-so-good situation.   Cherish each day.  Be together, do things together, because “you two will always be one.”

 All the best to you and yours as you travel down “Lovers’ Lane” together, arm in arm, and heart in heart,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV diagnosed Nov. 2012

 P.S.  http://csn.cancer.org/node/301646

 Here is a letter I wrote to “Brian from the North” who wrote on the Peritoneal Cancer forum.  It’s about things I learned during my chemo treatments.  His mother is the cancer patient.  And I am preparing a compilation of topics so my sisters can find out more about Ovarian and Peritoneal Cancer.  They’re already living with it, but all the info we need isn’t always tucked up in one nice package.  It helps me to understand what’s going on “inside”. 

 1.   http://www.oncolink.org/treatment/article.cfm?c=143&id=114&aid=452

 “…About Carboplatin

 Carboplatin is a heavy metal compound that inhibits synthesis of RNA, DNA, and protein in cells. All of these compounds are vital for cells to divide and grow. By preventing them from dividing, the medication can stop the cancer from growing.”

2.   http://www.oncolink.org/treatment/article.cfm?c=143&id=145&aid=430

 Paclitaxel (Taxol®)

 “…About Paclitaxel

 Paclitaxel is a plant alkaloid that was developed from the bark of the Pacific Yew tree. Paclitaxel works by disrupting the microtubular network essential for cell division and other normal cellular functions, eventually causing cell death.”