2/29/2008: Vacuuming My Pillowcase

Today has been quite a day to say the least. I awoke to a DISASTER. I lost so much hair during the night that I could have vacuumed my pillow case and made an army of Barbie dolls. Kere came over first thing this morning and we had a buzz party! Of course, I did the first cut, then after that I handed the scissors over to Kere. I now have a half-inch of hair on my head and it's SO chilly outside. Eeek! Some people might find it strange that I decided to buzz my head as opposed to just letting it fall out naturally, but honestly, for me, it is about control. Cutting my hair off (or allowing Kere to) liberated me and made me feel as though I had a say in the situation. Strangely enough, I actually think it looks adorable!

I had my third round of Herceptin this morning, which didn't go too well. The medication gives me a horrible headache and makes me quite nauseous and sleepy. They were able to give me medication through the IV/port to help easy the side effects, though.

They checked my blood count prior to administering the medication and I was disappointed that it came back bad. My white blood count has dropped, but is basically back to where it was prior to chemotherapy, so it is considered average. The shot in my stomach had simply elevated my levels to keep them from dipping too low, but now they are back to normal. On the other hand, my red blood count is very low, meaning that I am now anemic. Not good! It is normal that the chemotherapy can do this, but I should try to adjust my diet some to consume more red meat and green veggies. It is a double-edged sword, however, since those things can make my IBS act up, especially the red meat. My nurse said they would watch my red blood count level and if it dips lower then I will need to administer another shot after chemotherapy for the red blood cells along with the shot for the white blood cells. Stupid cells. Stupid cancer.

This whole thing is quite a roller coaster. Just when you think things are on track you blaze into a dark tunnel and get swept into a cork screw.

2/28/2008: Losing My Hair

My hair is falling out ... what a surreal feeling! The only way I can explain it is that my head is itchy and tingly. My scalp feels numb, almost as though my hair is floating on my head. Yesterday afternoon it started coming out in big chunks. I talked to some of my girlfriends about it and they were all so upset ... worried about how I was doing with it. Well, all except for Kere who cannot wait to shave it off. Haha!

I shampooed it last night and with every scrub, my hands were covered in hair. I blew my hair dry and my sink, floor ... everything was just covered in hair! It was too much to take. I sat on my bed, cradled my head in my hands and just breathed. Then the fear passed. I knew this was going to happen, but still, how do you prepare for it? I called my parents and they seemed more devastated by what was happening then I was. I guess it justifies that I have cancer and this journey I am now on. For the past few weeks I kept hearing, "Well, you don't look like you have cancer" ... now I guess I will. At this rate, I will be bald by the weekend. Thank goodness I love my wigs!

Yesterday my Dad and I met with the genetics specialist. She bombarded us with tons of information about the two genes that can mutate causing breast cancer. We all have these genes in our bodies, but for some reason some people's genes mutate. I went out with my girlfriend Kori last night and told her that I guess I am an X-Men now. She thought it sucked I didn't get a super power with my mutation. I agree, because invisibility or x-ray vision would be sweet!

The genes are BRCA-1 and BRCA-2. They took a lot of blood, which I am am becoming more and more numb to at this point. The blood is sent to a DNA lab where they basically look at my strand and try to find if there is a mutation. She explained that it is like reading a thousand page book looking for one misspelling. I loved her analogy! The test alone costs over $3,000 and I am hoping my insurance pays for some of that. That's the same cost for just one of the shots I give myself in the stomach after chemotherapy to raise my blood count. Ugh ... the bills are starting to roll in.

I should find out in a couple of weeks (3 to 4, typically) if I have a mutated gene, meaning I carry the breast cancer gene. This will then tell them how likely I am to develop breast cancer again in the other breast if I choose to keep it, or another cancer, such as ovarian in the future. Ovarian is the most common second cancer of women who have breast cancer. They believe it is because of hormones in the body, specifically estrogen. The chances of me being positive for BRCA-1 or BRCA-2 with no family history of cancer and only being 26-years-old is only 7%. That's good news! If I am positive for the mutated gene, then Mom, Dad, Joey and Kimberly will all need to be tested. They will then determine whether it is Mom or Dad who passed the gene and then that side of the family can all be tested.

She also explained that if I choose to have a bilateral mastectomy, then my chances of having breast cancer again (regardless of my genes) is reduced by about 96%. The 4% is because there is no way to remove all of the breast tissue, so there is always a small risk. That just further justifies my gut instinct. They also suggest once child baring is over (between the ages of 35 to 40) to have the ovaries removed to prevent ovarian cancer by 98%. These are all things to think about in the future, obviously, but great information to have none the less.

I am taking baby steps and living on small victories right now. Let's hope the genetics test comes back clean and I am not an X-Men after all.

2/25/2008: Under the Covers

I could not be more upset today than I am right now. I called the oncologists office this morning to see when I could come in to have my Herceptin treatment. (Just to recap ... the office closed Friday due to the iffy weather and I sat around with my dad and brother for an hour waiting to find out what I was supposed to do. I never heard from anyone). One of the nurses called me back this morning and left a message while I was in a meeting. She said that I was on the schedule for 9:30am. UGH! No one had called to reschedule! SO FRUSTRATING! I left work and drove over to the office without an appointment. I explained how crappy I was treated on Friday and that they needed to fit me in today. I would have played the cancer card had I not been in an office with a bunch of cancer patients. Doesn't get you too far in that office. Haha!

I had my treatment despite not prepping my port with numbing cream. I felt every inch of that large, hollow needle get shoved into the quarter-sized contraption under my skin, above my still swollen and bruised breast. Excruciating! I sat there for an hour in the chair getting pumped with medication watching 'Price is Right' and 'What Not to Wear' on TLC trying desperately not to cry. I was alone, frustrated and scared. However, my nurse came to my rescue sensing I was at a breaking point. She sat and talked with me and was incredibly upset by my re-telling of what had happened on Friday. She left me to write an e-mail to the head of the practice. My nurse from last time, Julie, came to check on me also. I love them!

My blood count came back stellar. YES! The range for someones white blood count having my treatment is 4.1-10.9 and my count is 17.7. YAY little 100-pound body! That means the shot I gave myself in the stomach 24 hours after treatment is working. They also looked at my platelets. The range is 140-440 and I am at 292, which is average. Very good, indeed. They checked my mouth and suggested salt and baking soda mixed into water to rinse with throughout the day, then rinsing with Mylanta at night. Weird, huh? They said it leaves a soothing coat on your mouth. They were shocked that I had no sores. I'd like to take this moment to thank smoothies and ice cream for that!!! They checked my skin and lips which are in really bad shape. I am dry and peeling. They suggest cancer patients use Utterly Smooth lotion for their skin and bee's wax for their lips. Chapstick and other lip moisturizers have an ingredient called methylparaben, which doesn't help chemo patients. I am going to be SO smart when all this is over.

The nurses also checked my scalp ... and my hair is starting to fall out. (GASP!) I told them it was tingling and itching. It is hard to explain, but it feels like my scalp is numb and my hair is just floating there. They said over the next 2-3 days I will see a lot of hair loss and by Friday I will probably be almost, if not completely, bald. Thank goodness I love my wigs!!! I can't wait for Joey and I to take a picture of our bald heads together. LOL.

I made an appointment to meet with the genetics specialist on Wednesday at INOVA Fairfax. I will have an extensive interview with her about my family's medical history, then they will take lots of blood. Hmm ... more needles. Yippee! The blood work gets sent to Utah for DNA testing. They look at whether I am a carrier of the breast cancer gene and how likely I am to have cancer again. They compare the lab work to my family history to get the best possible analysis. Kind of cool when you think about it. Apparently this process/results take awhile, so I am happy to kick it off now.

I feel pretty crappy from the Herceptin treatment. It is an antibody, so equate it to the way you feel after getting the flu shot. That's how I feel every Herceptin treatment (Friday's) for about 24 hours. Not fun, but still manageable. In addition, my heart acts weird, meaning I can feel it beating off rhythm and just being all around lazy. The heart apparently repairs itself 100% once treatment is over. Stupid cancer!

Today has been frustrating all around. I'd like to just go home and curl up under the covers.

2/23/2008: Torn and Tattered

Dad, Joey and I arrived at the oncologists office Friday for my Herceptin treatment and the office was closed from the ice storm. We waiting for about an hour and no one showed up, contacted me ... nothing. Very frustrating! I am still waiting to hear what that means as far as keeping me on schedule. Hopefully I can get it Monday or just skip it, since I get Herceptin every Friday.

Well, my nurse tried to warn me not to be too surprised if day seven after chemotherapy was my hardest (since that's usually when your white blood count will drop the lowest, then start replenishing itself). I thought once I got through yesterday that I was safe ... I was mistaken when I awoke this morning to my disaster of a body.

Now, this isn't as bad as I felt earlier this week with the cold/sinus infection, but it certainly is a much weaker and tired version of me. Which frustrates me to no end. I hate being slowed down.

I have always envied Angelina Jolie's lips and dreamed of luscious plump pout, but oh my ... I don't want the pain that goes along with it, please! My lips are swollen, peeling and bright pink. If they weren't hurting and peeling, I would be ecstatic. Haha! In addition, if I open my mouth wide it cracks and bleeds. So just trying to eat has become extremely painful. The inside of my mouth, gums and skin, are swollen and raw. Ugh. Have no fear though, I am still eating like a crazy woman. Stupid steroids!

My nails started streaking brown and breaking terribly, so I went to get them done today so that they don't look so horrible. Some patients actually lose their nails completely from the Taxotere medication. Mine are just SUPER ugly. At least they don't hurt. I can deal with it just being a vanity issue.

My body is absolutely exhausted and my mouth is angry. I hope that this is the worst of it and that my body will start putting itself back together. I have a feeling this will be the ugly cycle after each treatment. Lord, give me patience and strength.

2/21/2008: Follow-Up

I honestly could not be happier today! Dad and I just came from my follow-up meeting with my oncologist, Dr. David Heyer. He is incredible and has worked with my surgeon, Dr. Kenneth Mason for many many years. I have such a great team of doctors at Reston Hospital really working in my best interest. They love me as though I am their daughter ... I can tell.

Dr. Heyer is so pleased at how well I am doing with my first chemotherapy treatment. My cold/sinus infection is clearing up and my strength is returning. My nurse Melanie ran up and hugged me when I walked in the door. Dr. Heyer shared with me some very exciting news!!! Apparently, last week there was a cancer convention where radiologists, surgeons and oncologists from all over the country gathered to discuss treatments, case studies and new techniques. They used ME as their case study. They basically pulled all my test results, images, etc. and work-shopped what to do with me. How cool is that!? They debated whether to do more biopsies, whether the mastectomy was necessary and even if I should be on the 5-year hormone treatment (which I could possibly not need once chemotherapy is done and they redo my tests). YAY!

Dr. Heyer expressed that he wants to fight one battle at a time because my course may change depending on how I respond to treatment. I was bombarding him with questions, obviously! So, for now we continue on the chemotherapy treatments every 3 weeks (ending May 30) with herceptin each week for a year. He said that the herceptin regimen may change, too. It could be anywhere from nine months to two years. Test results will give them more information to gage their treatment.

Once chemotherapy is done (May 30 ... can you tell that's my benchmark?), I redo my MRI and PETscan. That will determine if the treatment worked and killed the stupid cancer. Both Dr. Heyer and Dr. Mason are in agreement that I should still have the mastectomy. Within 3 to 4 weeks (no later) after my last treatment I will have a mastectomy with reconstruction at the same time. (I go to sleep with boobs and wake up with even better ones!) They don't want to wait too long for surgery because any microscopic cancer cells not killed through chemo may start growing again. Little bastards! The tissue and lymph nodes removed through the mastectomy will be dissected to determine whether there are any residual cells. Hopefully it will all be dead and gone!!! Within those 3 to 4 weeks after chemotherapy, I have to have my tests redone, meet with the surgeon and plastic surgeon, meet with a genetics specialist and start seeing the radiologist to set a radiation schedule. Whew ... lot's to do, but very exciting benchmarks, indeed. I need those goals in order to keep my sanity, or what's left of it, anyways.

Dr. Heyer said the genetics test will show if I carry the breast cancer gene. That will determine whether I am more likely to have cancer in the right breast down the road. This will answer the question, should I have a double mastectomy in June as a preventive measure or just a single? He believes it is highly unlikely that it will move to the right breast ... without the gene 1-2% chance and with the gene 10-15% chance. If I were to have breast cancer again, he feels that we would catch it soon enough (now that I will have testing every 3 months) that I could bypass chemo and just do radiation again. Obviously, we are thinking way down the road and dealing with a lot of "what ifs" ... but still VERY promising news none the less.

I really feel GREAT today and I am visualizing the medication killing my little insect-looking cancer cells (like Aunt Mary Ann told me to). My port has healed enough now that I have started working out again, which has proved to be a huge stress/anxiety reducer. The main thing to pray for now is that this regimen they have me on is doing its job and kicking this cancer's butt. Please keep the prayers coming, visualize my cancer being killed ... I still have a big fight ahead of me yet and I could use all your help.

2/20/2008: Infection Strikes

It seems as though my overzealous nature has gotten me into trouble. This morning I woke up and wasn't even able to get out of bed. I laid there crying and cursing my fatigued body. I attempted to go into work, but just walking down my three flights of stairs proved to be excruciating.

I called the oncologist and they asked to see me ASAP. Never something you want to hear. I managed to make it to the doctors ... it was just slow moving for this weak, little body. Once there, they took my vitals and did blood work. It only took four times of poking me until they found the vein. Lord, I am tiring of that. My nurse and oncologist both stopped to see me and were worried about nausea. I told them I was eating like a crazy woman and could not stop putting food in my mouth. They laughed and said that was exactly what they wanted to hear. I think they were pleased that my humor and spirit were still intact despite feeling horrible.

My white blood count came back higher than they wanted, which means there is infection/bacteria in my body. Blah. My throat is killing me, so they did a strep swab, but think I most likely have a sinus infection or bad cold. They put me on an antibiotic and told me I should be feeling much better by tomorrow. Thank goodness, because I cannot take this lethargic nature too much longer.

I asked if the fatigue I am feeling is normal after chemotherapy. The nurse said yes and no. Apparently, after your first chemo your body freaks out wondering what the hell you have just done to it. So, for three to four days after you can become very physically tired. The treatments get better from that point on. In my case, she said that I was feeling some of the chemo fatigue, but mostly this infection is what is bringing me down. Stupid infection!

I am home from work today trying to learn how to rest. I am not very good at slowing down and sitting still for too long. I make myself a bit nutty.

I hope you all have a great week and I will keep you posted on my journey.

2/18/2008: Slow Motion Sets In

Perhaps this is not the best day to be writing my update since I don't seem to be making much sense in my own head. People are asking how I am feeling and I find it so difficult to describe exactly what treatment is like.

Have you ever stood up too quickly and felt all the blood rush to your head and it seemed as though your mind was moving quickly, but your body was in slow motion? That's basically how I have felt the last 24 hours. Such a weird feeling! My little body just can't keep up with my active mind and that is a frustrating thing for me to try and deal with. I don't like to be slowed down. (Just ask my parents and brother how irritated I was yesterday that my body was not working the way I wanted it to. I was one grumpy girl!)

Despite my strange slow-motion-robot feeling, I am back at work today! My co-workers have been getting me lunch, etc. since my little legs shake when I stand up. (Oh my ... I am not going to be able to deal with getting old.) I am really sensitive to smells, so a couple of times I have had waves of nausea, but nothing lasting more than ten seconds. All in all, I have been doing surprisingly well for the kickoff chemotherapy treatment.

Besides the obvious fatigue and weakness, my bones ache from the shot I had to give myself in the stomach the day after treatment. Apparently, the injection stimulates the bone marrow to create more white blood cells and that can cause pain in the sternum, hips and thigh bones. Nothing a little Tylenol can't fix! The inside of my mouth is peeling along with my lips, which is an annoyance, but certainly nothing I cannot handle. I just hate when things don't taste right. My gassy, acidic tummy seems to be back on track with a little Zantec to help it out. The doctor said that was normal for someone with IBS like I have. As long as I have food in my tummy, I feel fine.

My only concern today is that I have a sore throat which according to my oncologist is not a side effect of the medications. I have been asked to take my temperature periodically throughout the day and keep up the fluids. They are afraid this may be the onset of the flu. Let's hope not! If I do get a temperature, then off to the hospital I go. BLAH!

I just wanted to let you all know that I am OK and just plugging along as best I can. I appreciate all the prayers, warm thoughts, love and support being sent to me and my family. This is obviously not just a hard thing for me to deal with, but for my entire family to battle along side me. Thank you from the bottom of our hearts.