You've Got Cancer (Part 3)

You’ve got cancer - The surgery.

I don’t suppose there are many announcements of “You’ve got cancer” that don’t follow with another announcement that they must operate. Now if breaking the news to you that you’ve got cancer isn’t horrific and scary enough, now it’s followed it by the threat of having your body ripped open, your organs disturbed or removed and your health and your life permanently upended. But they—the powers that be—are adamant that surgery is the only correct course of action to follow.

Around the first of July of this year, I was faced with the real possibility of bleeding to death. I was so panicked that I didn’t mind the thought of having my first “procedure” done. But still the fear and trepidation was there in abundance. I’d had a C-Section twenty six years ago and could only remember the misery associated with the procedure and the long uncomfortable recovery. Facing something on that major a scale a second time was something I’d wanted to avoid with every fiber of my being. But my life was in danger. I was, for all intents and purposes, bleeding to death and the myriad of doctors I’d seen thus far didn’t have a complete picture as to why I was bleeding and how to stop it from happening.

On the second go round of severe blood loss, I found my self in the ER again. After receiving another two units I was released by my OB/GYN. But it didn’t take as long to bleed out as it did to pump it in when I returned home. In frantic desperation, I phoned the doctor on call. I finally found a woman OB/GYN that understood what I was going through and she demanded that I return to the ER and await preparations for a D&C, (that’s a dilation and curettage). This is basically procedure that dilates or enlarges the vagina so that the uterus lining can be scraped or suctioned away for a more thorough tissue sample for biopsy. They couldn’t do the D&C right away as I’d lost too much blood, so I had to wait over night while receiving more transfusions. By now I’m feeling like I’ve had a complete lube job. The next day, July 9th, my surgery was scheduled for four p.m.

So how do you prepare for surgery or in this case, a minor procedure? My way is to panic. It’s my nature, thanks to my mom, also to worry about every little thing, real or imagined. Thankfully, I had great friends and family members that prayed for me. I also had a number of Priesthood blessings, so this first operation seemed to flow smoothly. I didn’t even start to panic until they wheeled me downstairs in St. John’s Pleasant Valley Hospital here in Camarillo to the pre-op room. I still had Tim’s hand in a death grip and the atmosphere was relaxed and casual. There was no rush and urgency like the time I had my C-Section. (At that time I was basically dying and my baby Mike was dying, so they were in a bit of a rush!)

When Tim was asked to wait in the hall and I was wheeled into the operating room, that’s when the unease slithered up my spine. Luckily, I remained calm enough that when they asked me to move my behind onto the operating table I was able to joke about it and move quickly. They were impressed with my ability. I told them I was working out. But the icy chill of the room, the sights and smells and the freezing table brought those anxious memories of my C-Section flooding back into my mind. But before I could full out panic, I was in La-La Land. The next thing I know some nurse is asking me questions and they’re wheeling me back upstairs to my regular bed. I’m thinking—piece of cake!

I rested through the night—as much as one can rest with nurses coming in your room every two hours to check vitals and change blood transfusion bags can be restful. July 10th, (our 27th Wedding Anniversary), I went home. As I’m getting in my VUE, I noticed a vicious pain in the calf of my right leg which continued to get worse prompting more doctors’ visits, an ultra sound and the vein filter which I discussed in an earlier post. A blood clot!

As stated earlier, my biopsy showed uterine cancer and that was a shock in and of itself when followed quickly by the words “you must have a complete hysterectomy”. Due to unusual circumstances, I was directed to a surgeon at Cedars Sinai in Los Angeles, Dr. Ronald Leuchter, a Gynecological Oncologist specialist that teaches at UCLA. I thought, wow! Holy cow! A world renowned specialist is going to operate on me. Going to Cedars Sinai was like being on a cattle drive for medical treatment. I was shown to one area in the Cancer Care center then upstairs to fill out paper work. After filling out dozens of papers, we were then given an escort to take us back down to the first place we went to be met by a nurse. The nurse took me in a small room for vitals then back to the waiting room for another nurse to take me to the exam rooms. The doctor obviously doesn’t have a lot of time to spend with you, so it was right to the business at hand when he announces what he’s going to do to you.

He told me that he would do a laproscopically assisted hysterectomy. Four tiny holes would be drilled in my belly from which he can see what’s going on and extract the offending organs and tissue. At least that was the plan at the time.

So I’m sent home to worry and fret for two weeks and finish up my pre-op tests. And that’s pretty much what I did. Except at the time, I still had work to occupy my mind. My insurance company sent me a relaxation and visualization CD to assist in calming my mind and spirit before and after surgery. I’d like to say it helped, but that would be lying. There were times when I could go to a happy place, which happened to be my grandma’s farm in Paradise, Utah, but not always.

I had lots of blessings and prayers offered in my behalf. Tim and I left for the hospital the Sunday afternoon before and stayed at a lovely hotel in Beverly Hills. Only I couldn’t really enjoy the room because I had to fast and do other terrible unmentionable things in order to be ready to be cut open in the morning.

I was in the South Tower for the Operation and Recovery

The morning of the operation, I was up very early and got dressed in a minimum of stress. I was probably numb. We had to be at the hospital at 5:30 a.m. for a 7 a.m. surgery. There was also a line of procedure to follow as we arrived at check in. We were herded upstairs to a waiting room then filled out more paperwork where I received my i.d. bracelet. My spirits were still high as I watched the room fill with other people in similar circumstances, although awaiting different surgeries.

When my name was called along with several others, we were herded back through a door and our loved ones were not allowed to follow us. This is the first time that I thought I couldn’t make it. I thought for sure Tim would be able to stay with me until I went under anesthesia. But this was not the case.

I was lead to a hospital bed, told to dress in a simple hospital gown, given a bag for belongings and then told to relax. Yeah, right! Who are they kidding! You try to relax in that kind of situation. For the next little while I was stuck with lancets, poked with needles, strapped to machines to test my heart and asked interminable questions. Then to complicate matters, my heart specialist hadn’t forwarded the results of my chemical stress test to determine if my heart was up to such an operation. They had to wait until well after 8 a.m. before the heart doctor’s office opened up to get the results.

Finally the anesthesiologist came to assure me my heart was sound enough for the operation. I don’t know. Maybe I was hoping that my heart was in such bad shape I couldn’t endure the operation and would just be sent home to die quietly. A gal can hope, can’t she? Anyway that was when this really cute doctor who was much too young to be an anesthesiologist came and put something really nice in my i.v. and for the first time, I started to relax.

I remember being wheeled into the operating room which looked more like a storage room with supplies behind glass and metal cupboards. There were lights and gadgets and trays of something. The last thing I remember is being asked to move my butt over to the slick, cold operating table, then nothing. Total absence of consciousness. Oblivion. Because the next moment I’m awake and somebody is talking to me and I was asking for Tim. I remember little of the time in recovery. I guess maybe at the point I’m writing this, I didn’t want to remember it. Before long I’m being wheeled down the hall, way down the hall, almost to the end of the third floor hall to a group of four rooms at the end. This time it is an extremely painful proposition to move my butt from the table to my new bed. With a lot of help, I manage it. Then finally I’m allowed to see Tim.

I was in the hospital for six days. I already had problems with my right leg and the blood clot there. It was so swollen and painful; walking merely to the nurse’s station was a feat of monumental proportions. But the second day, I noticed my left leg swelling much the same and tried to bring that to the attention of the nurses and doctors. But no one paid much attention until on the third day when they tried to get me up to walk and I nearly passed out a few steps from my room. Then they finally paid attention to me. Then I was rushed down to the radiation room for an ultrasound on both legs. Yes, indeed. Blood clots in both legs. Now I was faced with a big dilemma. You must walk to recover from the surgery. I couldn’t walk because of the horrific swollen legs. What do you do?

There’s one very minute secret that doctors don’t explain to you after surgery and that’s the gas that results from surgery. Of all the pains of surgery, that was by far the most intense, miserable pain of all. Gas and bloating and not being able to pass it are by far the worst pains you can possibly endure. I’ve never felt such pain in my life all because I couldn’t, to put it bluntly, fart or have a bowel movement. That’s why my hospital stay was longer than usual. Until you pass gas, you don’t leave, even if you can’t walk. That’s not as important.

When I finally passed a little gas, it was like graduation day and the fourth of July all wrapped up. Yippee! The day after I did, I was allowed to leave the hospital. I have to tell you, my leaving the hospital was not how I’d planned it to happen. I was barely able to move without screaming. I felt like I’d been run over by a team of Clydesdale's, the beer wagon and the little Dalmatian dog as well. The car was most uncomfortable and extremely hard to get into. Luckily, at home we rented a hospital bed as our bedroom is upstairs and I never could have made it up the stairs. I couldn’t lift my foot off the ground more than a couple of inches. I felt miserable.

So for two plus months, I attempted to recuperate. But the leg clots have really held me back. At one point I measured my upper thigh while it was swollen. It measured 31 inches. That’s huge! I felt like a baby and was reduced to using a walker to move around the house and a wheel chair if I went out to the doctor’s office. Short trips anywhere, including the grocery stores was out of the question. So many friends came by to wish me well and brought food and flowers. I will always be grateful for their thoughtfulness and concern.

It has been a long, trying road of recovery. At first I could barely move out of my hospital bed and going to the downstairs bathroom was the furtherest I could waddle. I couldn’t even manage more than a bedside bath. I gradually graduated to a sink bath with Tim washing my hair. Even that was a major accomplishment. The next step was me washing my own hair and being able to stand for a significant amount of time without passing out. Six weeks after my surgery, I attempted the stairs and found with a lot of pushing and pulling I could make it to the top. I still had to sit down for a shower and had to rest for a while before attempting to go back down the stairs.

Along the path I developed a rather ugly little growth near my surgery scar. At first I thought my scar had broken open, but that wasn’t the case. My doctor thought it was a seroma, which is a collection of fluid within a dead space in the tissue following a surgery. I had an ultrasound because of the swelling and fever then I was sent to a dermatologist. Neither proved useful, except the dermatologist decided I needed to go back to see my surgeon. But his schedule wouldn’t permit a quick visit. So I was directed to a surgeon in Ventura and he knew right away that the growth was a post-surgical tunnel wound—a deep tunnel seeping fluid and blood from somewhere deep inside my body that hadn’t healed properly. Yikes!!! He stuck one of those long Q-tips down in it and had Tim holding on to his stomach. It went down in about 7.5 centimeters. It was very distressing. Hadn’t I had enough problems resulting from one surgery?

So now I have daily visits from in-home nurses who pack the deep tunnel wound with gaze in an attempt to dry it out and shrink the thing. It’s a miserable process and one that has taken a month and a half already. I don’t know how much longer this process may take. The surgeon here, Dr. Timothy Bryant, thinks I still may need another surgery to repair the wound. Does the nightmare never end?

I went through physical therapy here at home and grew stronger. I was even out on the street walking with a cane. So I am progressing. But I still have to wait and see and keep enduring the daily visits and wound packing and wear those awful compression stockings that squeeze your legs tight. I don't even know if I'll be able to wear normal shoes ever again. I don’t have much hope of that at present.

I was standing at my kitchen window the other day and looking out in the backyard. It was a glorious day in Camarillo. (Most of them are.) And I was wondering how far I’d come. Sometimes the Lord lets the image of tragedy and bad things fade, for which I am very grateful. That’s why it was good to sit down and write about the experiences of my surgeries so I can recall what I went through. MY body may never be the same as before my surgery. That’s life, right? But it was an experience that taught me a great deal and maybe I’ll be able to help someone else facing the same situation.

You've Got Cancer!!!

I have no idea how many millions of people have heard or will hear that phrase in their lifetime. Those three words can strike terror in the heart of anyone who hears them. Sometimes the doctor who says those words delivers them without passion or preamble. And they say it so casually and without sympathy that at first the words don’t sink in. Then the words “carcinoma” and “cancer” begin to bang around in your brain until they register.

That’s what happened to me when I heard the words: “endometrioid adenocarcinoma”. The doctor that uttered those words did so like she was telling me I had warts. Wham! Bang!

At first you feel disbelief, then shock then denial. “What, me - cancer - no way! There has to be some mistake,” you say to yourself unbelievingly. Everything horrible and awful you’ve ever heard, read, seen or known about people who have had cancer flashes in your mind. Surgeries, chemotherapy, radiation and death - oh my! The phrase paints a very bleak picture, doesn’t it?

In the back of your mind, as much as you don’t want to, you witness your own mortality. Even for the most faithful people, even for those who understand the meaning of life, this can be an incomprehensible moment. So we turn to the professional for answers, which means more tests, possible surgeries and months and months of painful therapies in the hope that we will survive—and that’s if your insurance company will pay for it all. Heaven help those who don’t have the right type of cancer and insurance. (But that’s for another piece.)

The one thing we cannot lose is our hope. We hope for the cure and a speedy recovery because without hope, the process would be dismal and disheartening. We have to believe that even cancer is a part of Heavenly Father’s plan of happiness. Odd, don’t you think, to say that cancer, disease, famine and any horrific human event is part of a loving Heavenly Father’s plan, but it is!

For a cotton-headed ninny-muggins consummate pessimist like me, finding the blessings in a disease like cancer is like Indiana Jones searching for the Ark of the Covenant. There’s a map. It may be a little hard to decipher, but if you find the right people with the right knowledge. Viola! Treasure!

The scriptures tell us that all these things shall be for our experience and if we endure them well we shall have a crown of glory. It’s just hard in our finite minds to translate the pain of suffering into something glorious.

Wise men have said that suffering teaches us compassion for others. When we think of the Savior, do we remember that he bore our sorrows and our infirmities so that he may know how to comfort us? Sometimes we think that he only bore our sins, but wise men have instructed us to cast our burdens upon the Lord. But being a pessimist and a realist, as Tim always reminds me, I can’t help but wonder how this is accomplished.What’s the magic formula for handing off my cancer to Jesus Christ? I’ve got to be honest, I don’t know how to do that, yet many people seem to find strength in doing just that. Do we kneel down in our own Gethsemane and plead with the Lord to let this cup pass from us? But then in humility, do we not say, “not my will but thine be done?”

So where’s the handoff and where’s the comfort? Where’s the relief from pain? Is it only a figure of speech? Is it only in our minds or does it physically happen? We can say that many people are cured of cancer. I don’t particularly know the statistics but I personally have three friends who have survived and gone on to live very happy and normal lives. But I also have friends who have fought diligently only to lose the battle in the end.

Oh, if we could only have a glimpse into the mind of the Lord–why he calls some home and why he lets some linger. So really, the only thing we can do is have hope and faith that whatever happens, we can accept the mind and will of God. If however, you don’t believe in God, that’s very sad, but I’m not talking to those people – those unhappy few who believe that we are just here by chance and when we’re gone—we’re gone! Yikes!

As I sit here in a Catholic hospital looking up at a crucifix of the Savior up on the wall of my room, I wonder who comforted the Savior as he went through that terrible pain and agony upon the cross. How was he able to bear that suffering without murmuring or complaining? Crucifixion is a most terrible form of agony because it is prolonged over a long period of time.

I wish I could say that I’ve found the combination in my life to be able to throw off the anxiety and fear, but even at age 54 I’m still learning what it is to be able to put all my trust in the Savior. I’ve often felt that phrase, “O ye of little faith,” applies directly to me. I also know that faith is an action verb so I’m doing everything I can to put my miniscule faith into action. I believe that in the long run stepping blindly towards my Savior will bring me a reward of peace and comfort to be able to go through this trial even though I still have to suffer.

If I didn’t believe that, I’d run screaming into the night, except I can’t run now because I have a blood clot in my leg. But I have a little vein buddy now. An intervenous umbrella filter to keep the blood clot from my lungs and instant death. Ugly little fellow, isn't he?

So we pray, we fast, we try and do what the Lord asks us to do. We follow the doctor’s recommendations. We put our faith in Christ. We reach out to others who have suffered with similar experiences and we draw on their strength. And we move forward one faltering faithful step at a time and hope for a glorious resurrection free of pain, sorrow and sin.

Tim asked me something while I was sitting in the hospital grimacing in pain. When have I felt the Lord’s love for me? At first I wanted to scream, NEVER! But as I thought and pondered about that, I really was surprised to have things come into my mind. Sometimes the pain in my body is so hard to endure that I toss and turn in bed trying to find a comfortable position for relieve. I offer a tiny prayer in my head for comfort and for sleep. Suddenly I’m sleeping. Coincidence? I don’t think so!

On other simple occasions when I’m rushing here and there and tend to have a lead foot from a stopping position in my car and jump on the gas to race across the intersection only to find myself sitting there, not pushing on the gas pedal when a car runs a red light in front of me and I’m saved from a crushing car crash. Chance? Luck? Hardly!

Sometimes I pray for Tim when he’s face with a particularly difficult problem at work that seems to be going nowhere fast and instantly, the answer appears as if by magic. Magic? Hockus Pokus? Inconceivable!

So do I know the Lord loves me because of marvelous manifestations of Biblical proportions? Absolutely not! Only tiny, tender mercies shown to me day after day after day; so very small I hardly notice them until I sit down and think. Yes. I know the Lord loves me and offers His hand in my life. Will he take away my suffering? Probably not. Will it become easier to bear, a lighter burden? Yes. Do I want these things to pass from me? You better believe I do. But would I learn what I’m supposed to learn because of suffering trials? No. Not really. But I can always ask. Right?

If we don’t gain anything else from a lifetime of suffering, pain, anguish, heartache, loss, grief and torment; at least we can help others face down their demons and have and offer hope. And that’s the way it is–from the view from my hospital bed here in Camarillo on a beautiful summer Sunday morning. See you in the funny papers!

Act Two in the continuing saga of what afflicts Carol

An update:

Before the end of May, I finished up my college English class and wrote a twenty page essay. As I mentioned in an earlier post, my essay was on the liberal slant in the media. I knew my professor would be ticked—as all professors and educators with the liberal mind set would be. But he begrudgingly gave me an A for the paper and an A in the class. So I figured that was five months well spent.

Also I mentioned before about my womanly disorder and the terrible loss of blood. I had bled out about one half of my body’s blood supply. Since the human body holds approximately six quarts or 5.6 liters of blood, that was astonishing to me.

It must have been astonishing to the doctor, because that's when my doctor insisted on the blood transfusion. I was worried over possible side effects. There’s always the worry when receiving someone else’s blood that I would develop a love of the NY Yankees and want to live in the Bronx or maybe have a crushing desire for gumbo and jambalaya and sing jazz. But the only thing that happened by the end of the evening was a feeling of giddy euphoria. Tim thought I acted like I was drunk. I was wondering, can alcoholics give blood???

Anyway, that took several more hours for me to receive two units, that’s 2 x 0.951019388 U.S. Pints or 2 cups. Not a lot of replacement blood when you consider I’d lost nearly 2 quarts. So over the next few days of feeling of as though I was a flat tire running on the jagged shoulder of the freeway for endless miles, I was fatigued, hapless and generally feeling blah. I missed a lot of work and church and life.

After the transfusion as I mentioned, I saw a GYN doctor who did a biopsy and went to a lab for an ultrasound. The results of these tests took the better part of two weeks. You really start to appreciate the value of time while waiting for results from a lab. Then Tim and I learned I had Complex Endometrial Hyperplasia with Atypia, fibroids and a cyst on one of my ovaries. English translation: an imbalance of hormones, precancerous cellular condition, high risk for cancer, thickened endometrium, heavy and continual bleeding and just a pain in the…neck!

My Gynecologist suggested total and complete clean out, so did my regular doctor. So we scheduled a visit to a genealogical oncology surgeon, someone who specializes in woman’s cancer issues. We saw him Friday, June 19th. I have to tell you, I had pretty much made up my mind to have the complete deal—the total clearing out of all essential woman parts so that further possible problems might be avoided. Who wants to be a seventy year old woman with ovarian cancer? Not me. But what the surgeon told us was bewildering and unexpected. Of course he added that a woman of “my size” would not fare well during a full-blown surgery. I wanted to scream and shout, “Hey, I’ve lost 104 pounds, doesn’t that count for anything?” I guess not. He warned against wound infections, the slow painful healing process, pneumonia, complications and other delightful things a person facing surgery wants to hear. He wondered why I hadn’t had a bi-pass surgery instead of fighting through weight loss on my own. I guess I must have had a look of incredulity on my face because he told me the statistics of people losing weight on their own then regaining it were high, perhaps 50 to 60 percent if not higher. (He’s obviously not seen my before and after pictures.)

He suggested a D&C (no not the Doctrine and Covenants) for additional biopsy results then three months of hormone replacement therapy, that is if the presence of cancer wasn't detected then at the end of the three months, more biopsies. This pattern would be repeated the rest of my life. With that option, there would still be bleeding and no telling how strong. Pleasant, right?

At the end of the discussion, I was stressed to the max, confused as heck and feeling like I could easily kill someone and probably get off because of PMS. He gave me the weekend to think it through.

Below is an ultrasound picture of Endrometrial hyperplasia with atypia
The arrows show the polyps or fibroids that are growing inside the uterus. Cause: Imbalance of hormones, too much estrogen and swelling of uterus which causes excess bleeding.

Now I know millions of women have faced similar situations and some have procrastinated their decisions for treatment with disastrous results. Nobody wants to face the decision of this magnitude. Life should be simple so you slip gracefully and quietly into those happy fulfilling and problem free golden years. Nuts to that! Seems I’m being shoved into those not-so-golden years kicking and screaming and holding on for dear life.

Today I’m researching my condition on the internet, doing an awful lot of thinking, some praying and having serious doubts. Can you say “second opinion”? All the ladies that I’m acquainted with who’ve lived through this suggest that surgery is the option that worked best for them. My surgeon suggests I won’t do well during or after surgery. Where does that leave me? I’ll tell you where. A place of confusion and frustration.

How will this end? Tune in next week for the continuing saga of “Will Carol Have the Hysterectomy or Will She Opt for the D and C With Hormone Replacement Therapy for the Rest of Her Life and Wait for Cancer to Kick In a Year or So?”