So this is my first official blog post and it is a little long (OK a lot long). I know that there are a lot of people that care about me and want to know what it is going on. I also know that I do not always do a very good job of communicating. Ok…I admit….I rarely do a good job of telling people the current health status especially the bad news and when I need something.
There are parts of this that are repetitive of emails I have sent out before. I apologize for those who have read them but I thought it best to start this with all the information. I also might give a little more information than some of you would ever like to know, but it in the name of full disclosure.
Ovarian Cancer: June 2007 (Stage IV)
Left Ovary, Uterus, Fallopian Tubes, Kidneys
I am on 3 different chemo drugs. My cycle is 3 weeks on, one week off. I just finished my 3rd cycle.
I am also having radiation every weekday. I have 5 more weeks.
I was having pain in June; ran tests and we found a big ovarian cyst. At the same time they diagnosed the cancer (without biopsies). They hoped the cyst would resolve itself and we were talking about a hysterectomy. Unfortunately, the cyst had other ideas and on 7/5/07 I had emergency surgery. They were able to take a good look around and take biopsies. I was referred to an oncologist at Hopkins and we decided that I was not strong enough at the time for surgery and we would start chemo.
I have had countless tests; ultrasounds, biopsies, CT scans, MRI, blood tests, etc. I have multiple masses in my left ovary, three tumors on my uterus (one of which is new as of 9/5/07), tumors on my fallopian tubes and kidneys.
I started chemo on 7/27 with two drugs in an IV. On 8/17 on what should have been my weekend off from chemo I had a kidney biopsy. I got the results back the next week. They found two masses in my left kidney that were both malignant and a lump on my right kidney that was also malignant. The next day I had to put the love of my Oscar to sleep. It was also the day I had my head shaved. Below is an email I sent out 8/21.
Just wanted to give you all an update on what is going on.
I had kidney biopsies last Friday and got the results yesterday. Not good, but that is what I expected, but it would have been nice to get some good news. The doctors are concerned and want to take an aggressive approach, but they do not want to operate yet. They want to try and save the kidneys and see if the chemo prevents the cancer from spreading any more. I am going to start radiation next week. Every morning at 6:00am. UGH! I will be going to bed early every night I'm sure. Went to the doctor yesterday morning. I am having a colonoscopy on Thursday (lovely prep for it). And then I have chemo on Friday and they are adding a third drug targeted at the cancer in kidney. No relief for the weary! They think I am having some acid come up at night that is causing the nausea to be worse. They are going to try me on some medication, but I might be having an endoscope as well. Why they can't do both at the same time, I do not know.
I am losing my hair at a pretty rapid rate. I cut it to chin length last Monday, but it has thinned considerably more and there is not much left with a couple prominent bald spots. My bathroom trash can is pathetic; full with curly hair, but I can't bring myself to throw is out. I wore a black scarf yesterday as a head band in the morning, but as the day went on, more hair came out on the top so I switched to cover the whole head. I am really self conscious about it. I am going to buy some hats and scarves made for cancer patients. I just don't see myself as the wig type. Today I am wearing one of the scarves I got in Italy. It is a mix of oranges and browns and it does fit my personality than a black one. When was I ever the conservative dresser? I think I will be biting the bullet and shaving the rest of my hair. I am getting sick of finding hair on my collar and pillow. Of all the things going on right now, this is the one upsetting me the most. Guess I am more vain than I thought. And I always said that I did not care about my appearance, "what you see is what you get", but losing my hair is really hard for me.
The Oncologist wants to start the intraperitoneal chemo soon, maybe even as soon as the next round. That is where they put the chemotherapy directly in the abdomen through a catheter. Studies have shown an improvement for survival for the trial participants than just intravenous only chemo. However, the side effects can be worse and poorer quality of life is reported. It requires a surgery to put in the tube into the abdomen and the original thought was to wait until surgery.
I don't know what to do. The oncologist says it is up to me, but he recommends an aggressive approach since the severity of the cancer and how much it has spread. I can't imagine more side effects. I already have the metallic taste in my mouth, feet tingling, sore scalp, hair loss, nausea, vomiting, diarrhea, tiredness, and plan old feeling like crap. The side effects of radiation are fatigue, nausea, diarrhea and vomiting. Oh joy, can't image being more tired. Good thing for sleeping pills so I am at least getting some sleep instead of lying awake for hours at 2am. I am losing weight, but still can't fit into my pants. I asked the doctor if he could suck out some of the fat when they operate and he said only if they found cancer cells in the fat tissues. I asked if I can bribe the lab into making an error with the biopsies.
Oscar is not doing so well. The muscle tremors have gotten worse and he is chewing at his legs. I had to shave a lot of his fur so he would not get too many hotspots. I think his legs hurt him. He looks like he has Parkinson's, when he just sits and his head shakes. Sometimes he head is shaving so much that you can hear the jaw knocking together. He often does not want to get up or when he is laying down is legs are shaking violently. He is not eating much (can you imagine that?) He has maybe eaten a total of a cup of kibble since Friday. When he does eat he coughs it back up. I think the muscle in is throat are breaking down and making it hard for him to swallow. I knew this would eventually happen after we saw the specialist in April, but I was hoping for more time. I am afraid he is dying and although he is very stoic, he is definitely not himself. I am going to have to make a tough decision. And here I thought it could not get much worse.
Please pray for Oscar. I really appreciate all the support you are giving me.
I found that shaving my head was very empowering and I have had fun with hats and scarves. On 8/23 I had a colonoscopy and the good news is they did not find anything – Good news for once. On 8/24 they added a third chemo drug and I started radiation 8/28.
On the break of my 2nd cycle of chemo I had ports put into administer chemo; one in the chest for the regular chemo (systemically) and one in the abdomen for intraperitoneal chemo. I was dreading the ports (not sure why), but I have to admit the port-a-cath is nice, because I was getting sick and tire of my veins getting jabbed. Needless to say, I have not spent too many weekends having fun. Don’t get me wrong, I have had plenty of great people around, but I can think of many things I would rather be doing.
Last week I have my 5 week radiation kidney ultrasound check and the results were mixed. The good news is the node on my right kidney on my right kidney is completely gone but the left kidney is not fairing so well. The size of a normal kidney is around 11cm, 5cm, 2.5. My kidney is 17cm, 10cm, 6cm, 21cm, and 4cm in different places. No wonder why am in so much pain and have to go to the bathroom every hour. They took a lot of blood work for kidney function tests and then had to get a MRI of the abdomen. The results did not come back so great and today 10/10/07 I had a liver biopsy. For those of you who are curious. I had to get a few needles to numb my back and they cut two one inch incisions and then stick my liver with this large needle to get cells from different areas from the liver. It will be about a week before I get the results. It is frustrating how long it takes to get the results back and for things like treatment plans to be decided. It is not unusual for advanced ovarian cancer to spread to the liver and often becomes severe when it does. It is rare for it to spread to the kidneys, but then again when have any of you known me to be normal. I was very upset to hear (as well as the doctors) that it may have spread to the liver.
I think I covered all the medical facts. I know there are a lot of people concerned about me. Especially because I tend to put on a tough front that I am doing OK and do not want to talk about thing. I always said that my golden retriever Oscar was very stoic and did not show what he was really feeling. That is a good description of me. I learned at a young age, that whatever was going on, you pulled yourself together and moved on and put on a happy face. If you had to breakdown you did it in private.
The test results last week might have been the hardest for me since the initial diagnosis. I did not want to talk about it because then it would be real. The reality of the situation is that it is really grave and there is a real possibility I could die. Surgery is not an option now because the doctor does not feel that I would be able to survive a long surgery right now. That terrifies me…there is so much more that I want to do…so surgery is not an option and I will just continue radiation and chemo.
I am so angry and tired. There are so many days that I come home and scream and cry and throw things. I keep why. I always said that God has plans and there is a journey for everyone. Well I don’t like my journey anymore. I have had enough. It has been a hard one. I don’t like to complain, we have all had our trials and mine really are not that worse than others, but I am 35 and I want my happily every after.
I am in pain every day. The kidney pushes on my ribs and other organs. The tumors in my ovaries cause pain, when I have my period the cramps cause the tumors to contract to and the pain is overwhelming. And then I ovulate…and least it is only every other month. I guess there is something to be said for things operating normally. I tell you guys you have it easy. I always prided myself on being unique…but being 35 with an aggressive form of Ovarian metastatic cancer is not really what I wanted.
Chemo weekends suck. I leave work at 11:30 and to get to the clinic by 12. I usually get home at 4:30. I am usually tired and feel like crap, work out, like I just hiked 10 miles but did not have the thrill of the hike. The norm has been that I start vomiting at midnight and it lasts until 9 in the morning or so. This alternates with diarrhea. I take another anti-nausea drug at 8am and it helps stop the vomiting, but I am nauseous for the rest of the day. This past weekend though I started vomiting on Friday evening and it continued until Saturday night. They say the IP chemo has more intense side effects.
I have radiation every day at 6am down at Hopkins and I try to be at work by 6:30. It takes more time for them to move the machine and position me than it does for the actual radiation. I have been trying to work full time. I know some people have been amazed at that, but I didn’t, I would not be me. I leave around 3:30 most days which is really a full day if I get is at 6:30, but I still feel as though I am leaving early. Some days I do not make it that long. There have been a few days I have not made it past 9 or 10am.
I am not sure what is worse; the disease or the treatment. I know I am in pain and tired, but the treatment makes me tired and the side effects are horrible. I am exhausted all the time. I have horrible neuropathy (painful tingling) in my feet, horrible taste in my mouth; I am finding my tongue hurts after 5-6 bites of food even if the food is bland and at room temperature. It as if the nerve endings on my tongue are being cut. My favorite foods do not taste good any more. There are some foods I am not allowed to eat anymore and more often then not I throw back up whatever I eat. I am sick of being nauseous (no pun intended). Before I eat stuff I contemplate whether it will taste good coming back up. I hate being fat and bloated all the time and not being able to fit in many clothes. If I can’t keep food down I should not be gaining weight.
Thankfully Elisabeth helped me go through my closet (ok she did all the work) and I no longer have clothes that do not fit, but I only have black pants. I wonder how much a uterus weighs. I want my old life back. It is beautiful outside and I don't have the energy to go hiking or even a long walk in the woods to watch the leaves change. I am sick of getting up at 5am every morning. I want to sleep in.....with someone. I miss my hair. I am OK with it, but I still miss it. Cutting it was harder then anything, but having it shaved was empowering. I am cold all the time….well except when I am hot. I know that does not make any sense but I am have trouble regulating my temperature.
I want a boyfriend. I want to fall in love. I want have to energy to do the things I love. I hate having to depend on people. Please don’t take me wrong. I love and appreciate all that you have done…..the food, the organizing, the cleaning, listening, taking over when needed, not taking no and knowing that I need help. But I like independent. I know I probably still make it seem like I have it all together, but I don’t. I am falling apart and I am so scared and I don’t want to do this. Some days the only things that keep me going is was Oscar and now I talk to him all the time, my nephews and just being grateful I wake up every day. I don’t know why I can sleep during the day, but not at night. Do you think I can get a heartbeat installed in my body pillow so it can lull me to sleep at night?
I had that stupid abscess on my head. It could have been an infected hair follicle or a cyst. It is not like the hair follicles are doing anything so I guess it was just bored and was thinking “hey, what can I do to entertain myself?” And of course because it is my luck, it got infected and it was a drug resisted Staph and I had to go to the hospital to get it drained because I had nothing better to do that weekend. Can you tell it is my sarcasm and bad sense of humor that gets me through? I went to the surgeon on Monday and he said that the sore is not completely healed and the infection will probably come back, but he does not want to cut it open and do anything now. I am to watch it (like that is an easy thing since it is on the back of my head) and go back if it get infected again.
Next week I have a PET scan and a brain MRI. I asked what are we going to do if the brain MRI comes up negative and the DR asked what do you mean? I said “What if you do not find a brain” I keep telling the doctors that if they keep looking for something and they keep searching, they are going to find something. Can’t we stop searching? What else are we going to find. I do not know if I am strong enough to handle more bad news. I feel like I am being tested to my limit. I one told someone that I do not mind running marathons and jumping hurdles but I like to gave a bit of a rest between the jumps
I also asked I if I could be the next medical ad. This is your Brain….This is your Brain on Chemo. I really want to go to Busch Gardens and ride the roller coasters and one of my friends called me about going to Fright Fest the end of the month. She asked me if I can reschedule chemo and I said, “Let me ask the Dr if I can switch my chemo so I can ride a roller coaster. It does sound a little petty in the big scheme of things. I did say something to the doctor last month about rearranging my chemo and radiation schedule so I could have a social life and he said it was hard to have a social life if I was dead. So then I said that I had a smart ass for a doctor. He sad he had to be if he had a smart ass for a patient.
One of the things that drive me crazy is when people ask me how much long I have in chemo or where I am in the cycle. The problem is I do not know. Radiation is the only thing with a finite time frame because there is an end date. They can only give me so much radiation. I call it zaps, so I know it will end in 6 weeks, but the chemo will go on for as long I let it or I am alive. The other thing that drives me crazy is when people I hardly know especially at work will come up and ask me questions not because they really care, but because they are curious and I am going to come up as topic at the next water cooler conversation. I really love it when those same people tell me that they know someone with cancer and they beat it and I can too and I just have to fight hard. I am so glad they said that, because I was just going to sit back and twiddle my thumbs and take my chances.
Maybe this blog was not such a good idea. It might just be giving me a forum to bitch. It you have the patience to read all of this I thank you. I am going to try and keep up with this. I believe you can subscribe to this to be notified when I post and update. Also feel free to make a comment or send me an email. Thanks again to all that are praying, lending your help, time and love. It does help and is making a big difference.