My experience with chemo was that it was unpleasant but not as bad as I had feared. In fact, none of this experience was as bad as that! I was able to lead a relatively normal life for the most part, especially in the third week after each chemo infusion, although I didn't have much energy.
The results of the first infusion of chemo were quite painful in my belly. It wasn't unbearable by any means but nevertheless, painful. After only 4 weeks since surgery I thought that things must be still quite raw in there so I imagined that the medicine was hitting all those raw spots that had been biopsied or where organs had been removed. Those places where renegade cancer cells would find it easiest to hunker down. With that in mind, I welcomed the pain. It turned out that I had not been given Carboplatin but Cisplatin which is much stronger and has more side effects. I chose to see that as a blessing because to date I am well. Maybe it was a divine intervention that whacked me with the stronger medication in those first weeks ... for a reason. We will never know.
I listened to my meditation tapes. I went to Howard Batie for healing sessions and hypnosis to manage pain. I had many friends praying for me. I was deeply touched to learn that my son in law's sister's mosque in California was also holding me in their prayers. The Carepages was a great source of loving support. I highly recommend this wonderful free service. John had learned about it from his sister when she was having her cancer surgery in Toronto. Her daughter had set up a Carepage for her.
If you have to experience this surgery or chemo, you will need a caretaker. I did feel a loss of appetite and was tired. I still had pain from the surgery so I was in bed or on the couch most of the time for the first month or so. John was fantastic in his caring and consideration. I could not have managed without his loving care. He did laundry, helped me in and out of bed, got drinks for me, grocery shopped, cooked... although I wasn't up to eating much. Eating was kind of like those first few months of pregnancy when you feel hungry but then when you start to eat, the food in your mouth turns to sawdust! I had some Slimfast powder which worked well as a shake with milk in the blender. Charlotte gave me a huge bag of protein powder to add for extra protein. Sometimes I added a banana or some chocolate or ice cream, or yogurt. I also got cravings for soup made of veg, potatoes and ground beef so I pottered around cooking that when I was up to it.
The second and all subsequent infusions were the correct prescribed Carboplatin. It didn't really affect me much except that I was tired and had no appetite. I didn't have belly pain after the infection cleared up. In addition, to prevent me from getting too anemic, I had received a shot in the fat (plenty of that to stab) on my belly to boost red cells in my blood. The medicine is made from Chinese hamster ovaries. Go figure! You have to wonder what is wrong with American hamster ovaries? Maybe it is an animal rights thing? Anyway, I am very grateful to the Chinese Hamster Brigade for keeping me healthy. My white cell count was also low so I also had an injection of Neulasta. This was given to boost my immune system to prevent infection. But, lucky me....I had an allergic reaction that night so we were sent to the local emergency room by the UW Hospital doctor on call! My throat was swelling and I had a rash all over my body. A Benadryl injection in my butt took care of the problem but I wasn't able to have that drug again. Neulasta drug is very expensive but it wasn't until much later that I discovered that my medical insurance (Mega Life which was through National Association of the Self Employed) would not pay for it. Nor would they pay for the hamster ovaries shot. I suppose they figured that they would rather pay for me to have much more medical treatment should I get really weak or infected with some other malady? Or maybe they would have liked me to die so that they would not have to pay anything more? I ended up paying $6000 for one white cell booster and over $3000 for the hamster's donation, each month, out of pocket. Now, two years later, I just received a letter from Mega Life informing me that they are still fighting not to pay my bills. Naturally, we are not with Mega Life any more. In total, my out of pocket expenses were over $60,000. It is my understanding that Mega Life is under investigation with the State of Washington Attorney General Office for misrepresentation and other offenses. I have filed a complaint. My small Roth IRA that I had finally managed to start about 5 years before is all gone.
My hair started to fall out after the second infusion. I decided that I should get it shaved off as I didn't want to wake up with it on my pillow or have it falling out in clumps all over the house! A friend told me of his hairdresser who does this for people and fits them with a wig. I was fresh out of my second chemo so the Taxol flush was evident in my face. Having my hair shaved seemed like a tragic event. I was still trying to come to terms with the fact that I was in a life threatening situation and didn't know if I would survive this. My hair was shaved off reverently and quietly and then my head was tenderly and gently washed with much compassion. Having a bald head washed is a very strange feeling. Next I chose a wig out of a catalog and had measurements taken. It was about a week and a half before the wig arrived. Photos of this event in the albums to the left.
It was decided that next time, instead of the Neulasta, I could try the other drug of choice, Neupogen. The difference being that Neupogen is given, not as a single shot, but one every day for ten days. It was shipped to us, we kept it in the fridge and then John gave me the shot each day. Now I know how a diabetic must feel. The syringe was a tiny TB syringe, as was the needle but the medicine was keeping me as healthy as possible and I was not allergic to it. Whoopee! The side effects of this was pain in my leg bones that subsided after the series of shots was over, until the next round. And again, none of this was unbearable. I supposed that my bones were being stimulated to make new blood cells.
I was invited to participate in a Fred Hutchinson Research Center Study on the causes of Ovarian Cancer. A representative came to our home with pages and pages of questions about my life, eating habits, medical information, family history, weight history and everything else you could possibly think of. I think that I was told I would receive a copy of the findings when the study is complete. I'll keep you posted. I say think because I don't have a reliable memory since chemo. I joke about it as "Chemo Brain" when I forget mid sentence what I want to say, or cannot recall a name or word that I know so very well, but recently, I received an article from my sister in law which addresses the very real issue of damage to brain cells from chemo. http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&ref=health
My worst side effects were fatigue that wore off gradually until it was time to go for the next bout of Chemo. Also, I started to go numb in the toes...sort of like they feel after sitting on a foot for too long. This wore off about nine months after chemo finished. I had awful problems with constipation, due to the steroids and pain killers. I could not sleep at night. I lay awake replaying all the related experiences over and over in my mind. I think I was in some sort of Post Traumatic Stress Disorder. Now, two years later, I have just had my second acupuncture with Christine Hansen at Watershed Wellness in Lacey WA. watershedwellness.org and am sleeping without drugs for the first time since surgery. It is wonderful! If I were to have a relapse, or had to have surgery for any other reason, I would definitely engage Christine and her acupuncture to help me through. I would have been a lot calmer and less fearful had I known the amazing helpful changes that acupuncture can bring about.
As a reward to myself, during chemo, I bought a couple of other wigs on the internet, making sure that the return policy was acceptable as a wig is a very personal thing, an extension of oneself, when one has no hair. My hair had been longish prior to surgery so I wanted a wig that gave the same look. I also thought it would be fun to try being blond for a change in a different wig. That wig turned out to be my favorite (by Eva Gabor). It was light and comfortable, washable and fun. I rang the changes often just like clothes, I wore whatever suited my mood but most often went bald as it was summer and hot. It was comforting and pleasant to have so many women in the shops or street give me a big smile of encouragement when I was out in my bald state. Wigs, for the most part, are itchy! Like wearing a hat regardless of the weather and indoor temperatures. But they sure are morale boosting!
The staff on the 7th floor at the UW hospital became known to us after several visits. One time, John had brought his guitar to practice on and to while away the hours that he patiently waited and sat with me through each of these sessions. One of the nurses, Thomas, also played the guitar and brought his own in on a couple of occasions to sing and play for us during his break time. He was really good! It was good times as far as it could be. We watched video movies from the library on 7th, or brought Netflix DVDs to play on our laptop. I couldn't concentrate in reading a book. I guess this was part of the trauma reaction but a movie was distracting to a certain extent.
My sister in law Francilla, in Toronto had told me that in the chemo unit where she had her infusions there was a bell that patients got to ring in celebration of their last bout of chemotherapy. John and I talked about how satisfying that would be and thought about donating one to the 7th floor. We shopped in Childhoods End gallery in Olympia and found some very oriental looking bells made of old oxygen cylinders (how appropriate) by a local artist Tom Torrens so we bought one and took it up with us to my next infusion appointment. The bell was well received and was installed near the nurses’ station just in time for the end of my last chemo treatment so I got to be first to ring the bell. There is a picture in the photo gallery to the left of this page. The inscription under the bell reads: "To be rung in celebration at the completion of a healing journey." We have since heard that this bell ringing has become a tradition and has brought a lot of joy and determination to patients there. My sister in law in Toronto is now a 12 year survivor of pancreas cancer. Thanks for the idea Fran!
The port in my belly was removed immediately after chemo was complete. Dr Tamimi said that we would not need that again but the port in my jugular vein would be left in for a while, just in case. However, during my follow up CT scan, it was discovered that the tube had migrated down through my atrium (upper chamber of the heart), through the valve and into the ventricle. As I mentioned before, it is supposed to sit in the vein, just above the heart. I had experienced some episodes of strong irregular heartbeats and dizziness on several occasions but had put it down to anxiety. Assume nothing! It had been the tube pressing on the wall of my heart that had caused this. Dr Tamimi was very concerned and wanted it out of there immediately as it could have caused a heart attack or ruptured the wall of my heart. None other than Dr. Hickman, the person who invented the Hickman Port , was the Dr. who removed my ports at SCCA. What a sweetheart. We enjoyed him very much. I was extremely relieved to have that invasion out of my body! Not only had it been uncomfortable under the skin on my upper chest but because it was in my heart where it shouldn't be, also had the potential to kill me! All in all I consider myself to be extremely fortunate. I am a very lucky girl!
Of course, once chemo was complete, we had to have a party for people who had been so supportive by writing in frequently on the Carepage, phoning, sending cards, bringing gifts, helping with meals and such wonderful gestures. Several of my friends had also had cancer of various forms and survived so the party turned out to be a celebration for all.
I had CA-125 blood tests every month until three months ago when I was placed on a two month regimen. Dr. Tamimi told me that I am his lowest CA-125 scorer. I have had three CT scans since surgery. I have to be drugged up with several doses of Prednisone and Benadryl beforehand to prevent the anaphylactic shock that would result if no medications were given as I am deadly allergic to the iodine contrast that is used. Even then, I came out in hives the last time. My next scan would be in October 2008 I believe.
I feel well, and extremely fortunate to be alive. My deepest gratitude goes to all the people who assisted me along this journey. To Dr Wu who got me into an appointment with Dr. Tamimi before it was too late. To Ralph Munro who coached me how to get my husband home in time. To Senator Patty Murray's staff who 'just did it'. To the nurses on the 7th floor at the UW Hospital who provided comfort, consideration and kindness. To the student in Radiology who gave me the mantra. To my family for their ongoing loving support, especially Gabi and Charlotte. To Julie who was with me every moment of my surgery, to Sue who wrote on the Carepage almost daily with words of loving support. To Sherry Nickerson, my trustworthy employee and friend who ran my business while I was gone for almost a year and to Heidi and Holly, the GYN ONC coordinators at the Seattle Cancer Care Alliance who patiently assist all the patients under their care. But most of all, to Dr. Tamimi for his dedication, expertise and skill, I will be forever grateful. To my husband John, Thank you.
I am not out of the woods yet. It hasn't been two years since chemo was finished and I haven't been given the all clear. However, I am hopeful and able to live a normal life at this point. I hope that my story has been enlightening, encouraging and educational. It is my intention to let you know that it is a scary experience but not unbearable. Listen to your body, get annual pelvic examinations with a reputable GYN, get a CA-125 blood test as a base marker for you. Do not ignore symptoms. Your life depends upon it.