Doc: (sitting on exam stool across from me speaking in his normal, gentle voice) "You have liver cancer."
Me: (pause) "Okay."
Doc: (standing in front of his stool speaking louder) "Ms. Kaba, You have liver cancer.
Me: "Yes, I heard you."
Doc (walking across room and putting his face 6" from mine, loudly said.) "You have liver cancer."
Me: "Yes. I did not know that yesterday. I know that now. The only thing that has changed is now I know."
Doc: (looks exasperated and walked back to his exam stool and sits) .... he explains the next steps.
I named the cancerous growth "Oscar the Grouch". The team of doctor's job is to encourage Oscar to go to the garbage can and out of me.
This is my diary. I have not published it because I have not told my sons until I had more information. I plan to do that tonight.
August 4: Two weeks ago (July 17) I was diagnosed with liver cancer. I don't feel sick or bad, so the only thing different is now I know. I see the hepatologist in two weeks (Aug 15) . I am not looking forward to that as I fear he will be rude and condescending as previous MDs of his race have been to me. Since September 4, 2008, when I discovered I had Grade 4, Stage 4 cirrhosis and cysts in my liver that I would not go on the transplant list nor did I want heroic measures. I still feel the same way.
August 11: By Tuesday, I could feel swelling of the liver that "outlined" my rib cage about 1 inch. It feels hard and bumpy when I rub it. I sleep on my right side, so I need a Tylenol and a small pillow to press against the ouch so I can sleep.
By Thursday, my family doctor said to not get surgery next Wednesday. I am to call the gastro to say my family doctor doesn't want me to have banding of esophageal varices until after I see the hepatologist next Thursday. I call and the gastro's nurse was quite rude about it. I call my family doctor's nurse for clarification because I am referred to two hepatologists, a gastroenterologist and an oncologist - and I'm to make the appointments but my insurance has not received the paperwork to say who they will pay for. Currently, the medical maze is more frustrating then the cancer.
By Friday, I need a Tylenol three times a day to manage the discomfort. In hindsight, I think some of this is because of stress not the disease. The lumpy outline (swollen liver?) is now past my rib cage about 2 inches and I need a big pillow to press against my belly to rest at night. I had a great day. I went to the hospital (where my hepatologist doesn't practice) and attended an orientation, a cancer support group and an earring making class. The Cancer Support Community is fully funded through the late Gilda Radner. They have dozens of things to support cancer patients and caregivers; they even have cancer yoga that teaches positions to help cancer in different areas of the body - no pretzel-bending poses just simple poses. They suggest we make two pair of earrings - one for us and one to donate. Each cancer patient who goes to the hospital can pick a pair of earrings to take home for herself or to give (like a husband to give a wife). I made a pair for my sister and donated the other. They must have 500 different beads to chose from. While I was making earrings, the lady next to me was a caregiver for a lady getting her fourth round of chemo; the patient comes in with her little hat to cover her bald head and a big smile. She said she looks forward to chemo day because she gets to work on her painting while she's sitting in the chemo chair, then make earrings and then go home and be sick from the chemo while cherishing memories of her fun day. Later the art therapist arrived and showed us her progress on her painting of butterflies. Like many, she is sick the next few days, but said painting and creating really helped her through the process. If I understood it correctly, she can keep the painting when it's done or donate it to a fundraiser for the support group.
Saturday my sister, Pat, and I went grocery shopping after sharing berry smoothies I made; she made salmon sandwiches for lunch. I went home and slept for a while then cleaned out my closet to give things to the thrift store. Trying to do those things so Pat will have less to do if/when I pass.
Sunday now and my liver is uncomfortable most of the time and if I yawn or lay on my right side, it is painful even with the Tylenol (pain is 4 on a scale of 1-10). I went to Pat and Marshall's church. I talked to the pastor's wife to see if she knew my hepatologist - she wasn't familiar with him. Advent Health has hundreds of doctors, so it's not surprising. I made an appointment with her pastor/husband for counseling. I said I had two things on my mind: What questions do I ask myself to decide if I want to fight cancer or let nature take it's course; and I would like to be in his church even though I believe differently and need to figure out how to fit in.
I still haven't cried. I haven't had a down day. A lady at church asked me how I felt. I replied, "If I was any happier, God would have to turn me into twins to hold all this joy." That is true. Then I say to myself, what the heck is wrong with me? Don't normal people grieve and kick and scream and cry and carry on when they get a cancer diagnosis? And all I can say is "The only thing different is now I know." A month ago, I had no idea. Maybe it would be different if I felt connected to a partner who would hold me and comfort me while I cried - but I don't think so. I grieved 11 years ago when I discovered cirrhosis and came to accept that either cancer or a bleed from the varices would end me - unless a car wreck or other surprise beat the liver to my demise. I said 11 years ago that I wanted to make it 10 years - and now it's a few weeks short of 11. That's exceeded my expectations and I am content. I've had an adventurous life and I am so full of joy and good memories that outshine the sad times of my life.
It amazes me anybody gets well after a serious diagnosis. I've been to so many doggone appointments that it is hard to find time to rest adequately. I also have to do the legal stuff to prepare if this becomes terminal. I need a US will as my Canada will may be a mess for my executor to figure out. I need to change my recipients for my life insurance policies, etc.
I contacted my boys July 31 to ask when it was convenient to call. Neither responded. Since they are busy with their careers and large families (5 kids each), I understand. Being mostly estranged (maybe 2 conversations a year that they allow me), they are accustomed to not having me in their life. I won't post this until after I see the hepatologist and can give them more accurate information - like prognosis and projected graduation to heaven date or month. Then I will contact them. I love them dearly; but I also know when they have detached that my detaching from expectations and just being pleasantly surprised by any movement is a blessing. If we don't find the skills or strength to reconnect here; I firmly believe in the afterlife. I see their point, in some ways; I use to be a drama queen and that must have been very annoying to live with. I think they would be amazed how I have grown after I realized nothing in life - even myself - is any of my business or even important in the overall scheme of life. The scriptures say, "Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross..." (Hebrews 12:2a). That scripture also comforts me about my future death.
I now think of death very similar to giving birth. When my two boys were born, my goal was to be awake to participate and greet them, Another goal was not to scream even when labor hurt. I didn't want to lose my dignity (oh, pride is strong at times). Those are the same goals I have for my future death whether that be soon or decades away. Back then my body pushed out 8 lb 14 ounce boys; but whenever my time on earth is up, I will push out the real me from this "earth suit" that has allowed me to live on this beautiful planet and live in the eternal: "Christ in me the hope of glory" (Col 1:27) and "In Him I live and move and have my being" (Acts 17:28). Those scriptures won't be fleeting glimpses, but authentic, eternal reality.
August 17: It's one month since discovering cancer. It feels there has been a lot of progress but no progress. My boss is being awesome; I am so blessed to be working for this 32 year old, single mother of three who is also battling cancer.
After complaining about the pain and swelling; it is going down and I don't need pain medication. The doctor did give me something a bit stronger in case I need it. I took 1/2 a pill one night and it worked great.
I saw the hepatologist on Thursday. The one my two doctors wanted was Dr. K. This is Dr. C. but he was available to see me quickly and there was 2 month wait for Dr. K. My sister, Pat, went with me - after her spending the morning in outpatients for injuring her hand. I'm blessed to have her in my life. We both liked Dr. C. He was efficient, thorough, knowledgeable, caring, a touch of humor, and great at answering questions and giving information. The radiologist who read the MRI said the cancer was 7cm; he said it was 5.5-6cm but had grown into the portal vein which often causes cancer to metastasize to the lungs. He wanted to assure it has not metastasized, so he ordered two more C/T scans; then got his scheduler to book them for 90 minutes so we'd have time to find the radiology department. The C/T nurse didn't do very well with the IV, and one bruise is about the same size as my cancer. After two unsuccessful sticks, I said since this is 7th Day Advent hospital, would she pray before she made the third try. She smiled and prayed out loud, then I prayed and the needle went right in, worked and left NO bruise. Hallelujah!
On the way out of the liver clinic/transplant clinic, Dr. K. (the specialist my MDs wanted) was standing in the elevator with a co-worker and a patient (guess). I whispered to Pat to observe him. Neither of us said a word, but observed like we were Nancy Drew or Sherlock Holmes. He seemed arrogant, spoke rudely to the other people, even said he wished his vacation had lasted longer as he was sick of sick people. That did not give me much trust in him to guide my medical part of this disease. Pat's opinion was similar. Then I told her he was the doctor my doctors wanted; we both agreed it would be a bad match for me. I wrote my family doctor and asked him to please leave me assigned to Dr. C. I can understand how Dr. K. can be frustrated; as a hepatologist and transplant surgeon, I'm sure he has a very low success rate and sees many patients die. I can understand how even a very compassionate man could have bouts of frustration with his chosen profession. If you don't want patients to die; then become a obstetrician and birth life - don't chose a specialty where the patients who are sent to you have not been helped by various other specialties who couldn't help them before they land on your exam table, in my opinion.
August 16: I went to cancer support. The Advent Health only has group once a month and not much else - where the other hospital (Florida Hospital) has a full schedule of activities to help cancer patients and survivors and caregivers. I was the only person, so had a one-on-one with the counselor. Rather boring for me as she wanted to talk about my history. She was an intern, so I answered her questions openly as she learns her job. Then I made and donated 3 pair of earrings. I was tired and came home for a nap.
Miscellaneous stuff:
I remembered something my MD in Tulsa had me do when my gall stones were causing pain. I bought a large square of unbleached wool felt and a bottle of castor oil. I put the oil thickly on the fabric then put the oily side against my midriff where the pain is. I wrap around myself with two rounds of plastic wrap, tuck the edges under the edges of the wool so the oil doesn't run. Then I wrap a 6" ace bandage around it all and wear an old t-shirt that if it gets stained is no biggie - and put an old towel under my torso while I sleep. I remember back in the 90s that after 3 months, the cloth went from off-white, do dark, muddy brown from the toxins that had been pulled from my body. I started doing that again and my liver started feeling much better and the wool is already turning a pale orange/yellow/tan as it pulls out the toxins. I am grateful to God for helping me remember that old-wives therapy since it's helping.
I am having some nausea. I still have pain near the cancerous spot when I yawn, but not as bad - or maybe I'm just learning to yawn more slowly so the jolt to the cancerous spot isn't as intense. I no longer crave animal protein and am enjoying more vegan foods. That is good for my liver.
Now I'm just waiting to hear back from the hepatologist with results of the C/T, information if the cancer has metastasized, and what stage of cancer I have. Then I will tell the boys and my niece.
Spiritually things are different. The deep bond I've had with God for years now seems more real and precious. Above I mentioned my fear of losing my dignity. I told Pat's pastor. He's been hospitalized 9 times in 9 months. He told me some words of wisdom he learned from a nurse when he mentioned he felt like he'd lost his dignity. She said, "Your dignity comes from God - you can't lose that; your modesty may have been diminished,." Their cancer support may be puny; but their faith-based mandate has been impressive.
Pat seems to be taking my condition very hard. I feel sad about that; but I don't know how to help her come to acceptance. She will have to grieve the potentials of the future in her own way and all I can do is listen and care and be careful to not push buttons that cause her pain as she works through it. It's blessings like that that remind me I am not in control - God is and life is easier if I cooperate instead of rebel.
The big surprise for me was something I noticed while laying in bed resting and thinking about so many wonderful people who have touched my life and made it and more expansive and rich because of their presence. I realized many people I did not take time to tell them of what they did that was meaningful to me. As I itemized those things in my head, I look down and my hands are pulling invisible threads from the blanket my hands were resting on. That surprised me because that was something Mom did almost constantly during her last week. Then she'd carefully place the threads in whoever's hand was next to hers. Pat and I would smile and get a tear as we realized Mom was seam-ripping away the things that bound her to earth, just like she use to rip seams out of my sewing mistakes. It was endearing and made a loving memory for me. Sometimes she'd pull threads gently and sometimes furiously. I will not say me pulling threads is the initiation into my future demise; but I can say that the more threads we remove now, the less things hold us back from loving God and others. For those who read this far: you're impressive. Thank you.
August 21. I've known 1 month and 4 days now. I am tired of waiting; but turning it over to God. A secretary from the radiology oncologist called. I asked her to tell me the results of the C/T scan so I know if it metastasized. She said she can't tell me that. I asked if she could send it to my primary physician. She said he didn't need it. I asked how to get the results. She said to go to the hospital app on my cell. I went to the app and it wasn't there. I called the hospital; they sent me to the outpatient CT clinic but I waiting about 7 minutes and was cut off. I called the hospital again and they transferred me to somebody who could help. They said I could reach the tests through the hospital web site. I signed up and finally got to read it. Might as well have been written in hieroglyphics - I couldn't make heads or tails from it. I called my family doctor and asked if he could see me for a few minutes to explain it to me. I do know my treatment will be Y90. It is suppose to be good and I like that it only goes to the blood vessels that go into the tumor and doesn't affect other things. The current state is inoperable because the tumor has grown into the portal vein. I do not want a transplant. I had hoped for the treatment that they put a needle in and microwave the tumor so it dies; but the tumor is too big for that treatment. I used several online dictionaries. The treatment is for cancer that has not metastasized to other places. Yay. The tests want further testing of my T12 vertebra and spleen to assure the weird spots there are hemangioma and not cancers. I will need to have more banding of the varices of the esophogus. I hope they can do that when they do the outpatient surgery for the Y90 treatment. I did lose my peace and joy for an hour or two; but after learning lots of new words to read the report, I am back to my normal relaxed peace and joy.
