Wednesday, August 19, 2009

Another Week Off

Anya's fluid is up to 7.5! She's LOVING not having treatment so we're taking another week off. Then it's back to the chair for us.

Tuesday, August 18, 2009

No Herceptin

Last week I decided to postpone my Herceptin treatment. My Oncologist was very supportive and told me I could take 1-2 weeks off. I'm going for 2. Hopefully baby Anya will enjoy the time off as much as I will. Next sonogram is tomorrow, Wednesday the 19th. Amniotic fluid must stay up! Drinking liquids like crazy even though it isn't proven that it helps. Thanks to Renee for telling others about me, and to all of you who have posted nice things.

PS My last MRI came back negative! No new brain mets for me. Of course they couldn't do a contrast scan because of Anya, but as far as they could tell it was clear. Anya didn't like the noise and got all fidgety, but they kept it short and as quiet as possible.

Sunday, August 2, 2009

Baby Scare

Been in the hospital for a few days because Anya's amniotic fluid was dangerously low. I was on IV fluid for 3 days, had 2 iron infusions, and 2 steroid shots. Luckily the fluid came up and they allowed me to go home on moderate bed rest. I was terrified because if the fluid didn't come up then the baby was at a high risk for being stillborn. They were talking about a c-section and I'm only at 24 weeks! Babies that young don't do very well outside the womb! The steroids they gave me were to boost her lungs just in case she had to be born. All along we assumed she'd be early for one reason or another. We were hoping for 36 weeks (8 months). I hope she does make it that long but with this scare I'm terribly afraid I'm going to have a very sick and dangerously premature baby on my hands.

I keep thinking, "I've done this to her. To keep me alive I've risked her life!" That's because the low fluid could be due to my Herceptin treatments. But my ob wasn't so sure. It's been so hot in Seattle and I wasn't drinking like I should so she thinks that was a major contributor, especially since the fluids did come back up after constant IVs and a few days in an air-conditioned hospital room.

So now I rest as much as I can, which makes me feel useless and pathetic. I'm still wilting in the sticky heat although the temp has come down out of the hundreds! Trying to drink often, but it makes me feel uncomfortable to be that full of liquid all the time. Grrr! But I'll do whatever I must to keep her happy and healthy inside me.

I have an appointment to talk to my onc about postponing my next Herceptin treatment for a few weeks. My next treatment isn't until mid-Aug, and if I can postpone it until Sept, then I'll be at 30 weeks and the baby would have a much better (although not great) shot at surviving if she has to come out early.

In addition to bed rest (so most of my calories and fluid goes to her) they want me to eat a ton more calories because if she does come early she'll be better off if she's a good size. Nutritionists came by to talk to me in the hospital and were joking that they don't often advise people on how to eat more calories.

I'm one very worried momma right now! I keep resting my hands on my stomach hoping she's okay.

Sunday, July 19, 2009

Biggest Shock of my Life!

On May 7th 2009 I went in for a simple surgery to reposition my port-a-cath, and was asked to give a urine sample. As I sat, waiting for my surgeon to arrive, the anesthesiologist dropped by to tell me we might have to cancel the surgery. When I asked why he explained that the urine sample had tested positive for pregnancy. Peter and I laughed and shook our heads. No way could I be pregnant! I hadn’t had a period since I started chemotherapy 4 years ago. I had gone through chemo-induced menopause, or chemo-pause as I liked to call it. Periods stopped, hot flashes, night sweats, the whole works. My ovaries had closed the doors and gone out of business. Clearly this was a case of a false positive, because it wasn’t even possible.

That wasn’t enough to convince him so I said that in March I had a whole slew of tests (MRI, CT, PET) and the radiologist noted some fluid in one of my ovaries, “possibly related to menstruation.” My oncologist thought it was nothing, but since it wasn’t his department he suggested I follow up with my primary care physician. I saw my PCP the next day and she reassured me that with my history, it was probably just an anomaly. She went on to explain that she saw these things all the time and they tended to be nothing to worry about.

By the time I finished explaining all of this, my surgeon showed up and we explained again why there was no way I could be pregnant. I’ve known my surgeon since the day I was diagnosed because they sent me directly from the mammogram to her office for a biopsy. She is genuine and kind and the most personable doctor, let alone surgeon, I have ever met. Knowing me and my case she also thought it was a false positive but needed to be sure before going ahead with the surgery. Our options were to draw blood and await those results, or try to arrange an emergency sonogram.

While they were trying to figure out which would be quicker, my surgeon decided to contact the radiologist and have that doctor take a second look at the scans from March. He concluded that with my history, it was very unlikely that the fluid on the scans was a fetus, but if it turned out to be positive, then the fetus was about 6 weeks at the time of the scan, and about 13 weeks now. Despite the radiologist’s confirmation of his original report, my surgeon wanted to know for sure, so I was whisked away for a sonogram.

It was in that darkened room, with Peter sitting to my left and a sonogram technician waving a wand across my belly that we saw on a small TV, the tiny head and glowing spine of a 13 week old fetus. Holy shit!

At that point Peter and I were stunned senseless and freaked out beyond words. This was the biggest shocker since my cancer diagnosis and I dealt with it in much the same way: disbelief, tears, and a hell of a lot of fear. My surgeon called my oncologist to tell him the news and his response was, “How did this happen?” To which my surgeon responded, “What do you mean?” We all had a little chuckle, but it did nothing to ease the tension everyone felt. The surgery was called off and I was scheduled to see my oncologist later that day because we had some questions that needed answering. Unfortunately, answers weren’t easy to come by.

“How is this possible?” It turns out that pregnancy was only extremely unlikely not completely impossible. A very small number of women undergoing chemo have gotten pregnant, and an equally small number of women who didn’t have regular periods have also gotten pregnant, so pregnancy for me was still in the realm of possibility. This is a realm where getting bitten by a shark or struck by lightning are also, theoretically, quite possible.

“Has this ever happened before?” My oncologist did not have any personal experience with pregnancy and my chemotherapy medication, Herceptin, but he looked into it and within a week he had found only 5 known cases of women on Herceptin becoming pregnant. With such a small number of women, and only anecdotal information, this news did nothing to help us make the most monumental decision of our lives. Should we keep the baby?

“Has the Herceptin hurt the fetus?” This question could only be answered by an OB/GYN and the one we met quickly passed us on to a Parinatologist, or high-risk pregnancy doctor. This doctor had done the research and come up with the exact same 5 cases as my oncologist. In two of the cases, the pregnancy was normal and the baby healthy. In another two cases, the pregnancy was difficult but the baby was still normal. In one of the cases, the baby didn’t survive the pregnancy. Not the greatest news, but not the worst either.

“Have any of my other medications hurt the fetus?” My anti-seizure medications are Class C medications, meaning that their potential harm is unknown or inconclusive. Most anti-seizure drugs are Class D, which is definitely all bad, so I lucked out there, or rather, the baby did. The other drugs I take aren’t great, but not specifically harmful, so that was one less thing to worry about.

“What about all the radiation?” This one was a big worry for awhile. The scans I had back in March, exposed me to quite a bit of radiation. Then I had Gamma Knife Radiation to zap away a small brain tumor in April. The Parinatologist did research on the effects of radiation on pregnancy after the bombing of Hiroshima, Japan, and that was all we had to go on. He felt that the scans, while generally avoided during pregnancy, were of such a low amount of radiation (compared to Hiroshima) that the baby was probably okay. In his opinion, if the radiation had hurt the baby, the baby wouldn’t have survived the first trimester.

This was all the information we had to go on to make a decision about whether or not to keep the baby. All of this information gathering took several weeks, and we needed to make a decision before it was too late. There were so many things to weigh. How would we afford it? What if it wasn’t healthy? What if I got sick? What if my next brain tumor was inoperable? What if the cancer came back? What if I died? It was a gut wrenching, heart breaking, and overwhelming decision to make. Having a baby is a big decision for everyone, but when the additional stresses of my existence were thrown in, the decision became as seemingly impossible as the pregnancy itself.

Ultimately, our decision was to continue the pregnancy. For once, in this whole mess of living with cancer, something potentially wonderful has happened. A baby gives new meaning to life, and the amount of joy it could bring to both Peter and I is immeasurable. We’ve been through so much disappointment and devastation since my diagnosis that maybe bringing a baby into the world will balance the scales a bit. Besides, the baby had already been through so much, and so clearly had a fighting spirit and will to live, that we felt it deserved a chance to do so. Our decision also rested on love. Both the love we have for each other, and the love for the baby that grows each day that passes.

As I write this I am now at 22 weeks, and just starting to feel the baby move. The baby is a girl and we’ve chosen the name Anya Lee. We both really liked the name Anya, and Lee was my mother’s middle name. The pregnancy is turning out to be a difficult one. In those two cases of difficult pregnancy on Herceptin, the problem was a low amount of amniotic fluid. I was checked every two weeks, and sure enough, the fluid started to drop. It is at the very low end of normal, and if it goes any lower it could harm Anya, so now I’m checked every week. Luckily, we know from those other cases that if we increase the length of time between Herceptin treatments, the problem will likely resolve itself. So we’re watching and waiting and hoping that things stay as they are or get better on their own.

I am looking forward to the future. I look forward to meeting my baby girl and showing her the world for as long as I am able. I know my life is about to change dramatically in a way I cannot imagine, but if having cancer has taught me anything it has taught me that I have a pretty remarkable amount of strength, will-power, and courage. I can only hope I have enough to cover me, Peter, and Anya.

Friday, April 17, 2009

Never Doing That Again

Gamma Knife Radiation treatment didn't go well yesterday, in fact it ranks up there with one of the most painful experiences of my life. My mastectomy is number one, eye surgery is number 2, GNR ties for number 3 since I've had it twice and both times were agonizing.

The day before the treatment I met with a nurse to go over things and both my husband and I mentioned several times that the pain of the first treatment was extreme and asked what could be done. We went over my allergies (I have a lot of allergies to pain meds in particular), and she said she'd mention in to my doctor. The day of, the pain concern was brought up again a few times but with little result. I hate being a problem patient. I hate being the patient that nurses and doctors roll their eyes at. So I tend to keep quiet when things aren't going well. My husband does his best to speak up for me, but even that isn't enough some times. My husband talked to my surgeon the minute he walked into the room and he immediately prescribed some IV drugs so I wouldn't feel discomfort when they attached the metal gear to my head (held in place with 4 screws directly into my skull). I needed a little more Novocaine on one of the screws on my forehead, but my doc was quick to give it to me. The process of gamma knife radiation can take several hours and by the time I was wrapping up the meds were wearing off. I mentioned it to the nurse and she kinda shrugged me off.

Then they took out the screws and that's when it all went to hell.

The pain was instantaneous and overwhelming. I couldn't stop crying and then started hyperventilating. The nurse acted like I was just a big cry baby, but my husband and the student nurse who had been observing the whole thing were both trying to get me to calm down and asking what could be done. My doc came in and saw my state and immediately prescribed something for me to take when I got home, but what I couldn't understand was why no one was doing anything for me RIGHT THEN. My surgeon got called away and the nurse just handed me my clothes and told me to change. I couldn't get dressed without assistance because of the pain and I was cursing in frustration. We finally started to leave but the student nurse stopped us and said one of the other nurses was going to the pharmacy to get me something. So we went back to the room to wait and MY nurse came in and was surprised we were still there. We waited 10 minutes and finally the other nurse came in with the meds. My husband asked why this was happening to me and why they weren't prepared for it. She explained that some people feel nothing and some people feel extreme pain, but both extremes aren't terribly common. They do have medications on hand to give to people, but I was allergic to them so they literally had nothing to help me. She admitted that she'd been trying to have more medications available for situations like this, but hadn't made any progress.

So yesterday was agony, today is pain, hopefully tomorrow will be better. When I see my radiation oncologist in 3 months for a follow-up MRI I'm going to tell her what I experienced was unacceptable and I'm never doing it again. Another hospital in my area does a different type of radiation, Cyber Knife, that doesn't involve screws in the head and my rad onc works both places. The only problem is my surgeon doesn't work at the other hospital so I'll have to have another neurosurgeon, and that makes me sad because it's hard to find a surgeon with a good bedside manner.

Saturday, April 11, 2009

Here we go Again

I have a tiny tumor on my left frontal lobe; somewhere above and behind my left eye. So once again cancer is having a grand time finding places in my brain to settle down and raise a family. I'm getting it gamma knifed next week. Then what?

Spot Treatment (current plan)
Keep taking Herceptin 'cause it works from the neck down. Keep getting MRIs every couple of months. Hope for the best expect the worst. When tumors show in my brain, zap 'em with radiation. REPEAT. If the tumors in the brain start to get out of control, then whole-brain radiation.

The Alternative
Lapatinib aka Tykerb. Herceptin's cousin. Oral medication so no more monthly treatments. Very expensive. If it works at all, it may offer some protection for my brain.

What to do?
I have no idea. I'm afraid of what constant zapping will do to my brain. I don't want to go through this over and over and over until the end of my days. So part of me wants to try Lapatinib . The other part of me is scared shitless of going off of Herceptin. It's working, sort of. Is "sort of" the best I can expect? Is "sort of" better than the "maybe" that I'll get by switching to Lapatinib? If I go on Lapatinib and it doesn't work there is nothing else. All I can do is go back to Herceptin and hope it works again, but since that is never presented as an option I can only assume going back isn't ideal.

I don't know how to make this decision and I feel very alone and helpless. Half the time I want to sleep and never wake up. Half the time I can't sleep for the constant worry in my head.

Sunday, March 29, 2009

Not Much Fun

I am still in remission above and below the neck. Great. Still feel like crap though. Dr. Lee believes it is depression from the brain tumor and Peter losing his job. He prescribed an anti-depressant, but it made my chest hurt so my heart can't take it. It was a medication that was created for people with heart problems so there's nothing else. Dr. Lee is sending me to a psychiatrist to see what a specialist can do to help me.

I managed to get a non-profit to help with some of the costs of our health care (that we're paying for with Peter's unemployment), but I'm looking at about $4000 in bills this year and it's only the end of March!

We are moving out of our house in Seattle to the suburbs. We'll be living with friends, so that'll be challenging. My biggest fear is how all our cats will get along. My second biggest fear is how they will react when I hit my next set-back. People don't realize how many little set-backs there are with cancer. I tell people most of the big ones, but the little ones aren't worth mentioning. Now our friends will be witness to them too. I'm afraid they'll be overwhelmed. It's really not fair to force my issues on them, so I will do my best to keep things under wraps. If there were any other option right now I'm not sure I'd have agreed to this.

Finally, my baby girl (cat) is sick. She has a hyperthyroid. It cost us $400 to figure out what was causing her symptoms. She's on medication now and it seems to be working, but medication isn't the cure. The cure is radiation! No money for that, so we're treating the symptoms not the disease. Why does this sound familiar?