Blood Clot No. 4, Plastic Surgeon and Helmet of Hope

It’s been almost a week since the last blog and I thought, “Certainly, we are all downhill from here.” Not so.

I went to see my plastic surgeon on Friday and had felt a pain in my right elbow since the day before. I asked him that even though that wasn’t his specialty, did he think it was a blood clot because it had the symptoms of the previous three that I had already been diagnosed with. He said he thought so, wrote up the order for the ultrasound (so I didn’t have to go over to my oncologist, wait to be seen, just to get the order – which was SOOO nice of him). I went over to get the ultrasound, saw the same great tech that found clots No. 2 and 3, and she said, “Yep, here’s No. 4.” Took the results to my oncologist and they said they were “sorry that I was having such a hard time with all of this. That some people are just very sensitive and I’m just one of those patients that are going to have a hard time.” Great.

I’ve been very discouraged that I have side effect after side effect. I’m ready to get through this. The only thing that keeps me going is I have three more chemos to go. Three more then I’m done with this crap of feeling bad all the time.

Good news is I think the blood transfusion has helped with my energy level. The doctors said my hemoglobin levels were low when they ordered it last week. I didn’t know much about what hemoglobin numbers mean and a nurse friend of mine explained it to me. Normally, a man is around a 16; women 14. My nurse friend’s dialysis patients dip down to a 12 and I was a 7.8. SEVEN POINT EIGHT! No wonder why I had no energy!!!! I’m still tired quite a bit, but I do think it has helped as I’m able to do more things than I used to be.

Back to the plastic surgeon – he was great. I think I’m going to really like him. I’ve heard two people say he’s the “rock star” of breast reconstruction. He will work hand in hand with my breast surgeon for the mastectomy which is scheduled for November 17. Here’s what will happen:
1) Breast surgeon will remove all breast tissue – ALL of it.
2) Removal of my port used for chemotherapy.
3) They will put a stain in my lymph nodes to see which have been affected by the cancer and remove those. (Let’s hope it’s not too many so I don’t have to deal with lymphodema).
4) Next the plastic surgeon will insert extenders under my muscle and skin. Each extender will have a valve where the doctor can insert saline weekly to stretch the skin. It’s kind of like filling your bike tire with air. They insert the saline and it won’t leak out. Kinda cool.

I’m not sure how long the procedure will last. My breast surgeon said her part is 2.5 hours. Have no idea how long the plastic surgeon’s part is. This will be a big surgery. I will be in the hospital about two days and then have to wear drains for two weeks. I will be taking off almost two weeks of work to recover.

My breast surgeon said I will be able to start radiation anywhere from two to six weeks following the mastectomy depending on how I heal, but the plastic surgeon can’t start inflating the extenders until I finish radiation, which takes six weeks. So I have no idea when I’ll be able to have my reconstruction surgery.

Which means, I’ll be flat as a pancake for several months? I’m not sure how I will deal with no boobs at all. They say you can do prosthesis in your normal bras or padding to feel “normal.” I’m not sure about all that. I can’t wrap my head around not having boobs yet. I’ve read books that you should shop in advance to get ready for post surgery but I’m having a hard time thinking about that. Waking up to a bare chest. My grandmother had only one boob her whole life and I remember seeing her like that when I was young. It was weird. I know that’s going to affect how I feel about myself, even if I wear a prosthesis or padding. I wish I could say I was stronger and it didn’t matter, but I know it will.

I’ve finally think I’ll be ready soon to start seeing a therapist to help me get through all of these issues. Chemo has been too overwhelming, so I think after the mastectomy, I’m going to start seeing this woman who came well recommended and deals primarily with breast cancer patients. Even though I think I’m handing all of this okay, but I know I haven’t started dealing with the loss of fertility among all other issues. I think I’ve been pretty positive throughout this, but I can’t say that I don’t cry and get down sometimes. It’s too overwhelming and I know that a therapist will be able to help me sort through it all. I’m working on getting my body healed, but I’ve got to get help my mind get healthy by processing it all as best I can.

I have my second Taxol treatment this week. The bad body pains seem to last about six days. I think I would’ve had a bit of a break the last chemo cycle had I not had the blood transfusion and blood clot No. 4. I still have the pain of the clots every day, even today. They say it takes two to three weeks for the clot pain to subside and four to six months for them to heal entirely. Ugh. I hope I get some relief soon.

To end on a positive note, a really cool NASCAR media member (and great person to boot) did something nice in my honor. NASCAR driver Jimmie Johnson is going to wear a “Helmet of Hope” during the Oct. 11 NASCAR race in California. The helmet will feature 12 charities and each charity will receive $1,048 (for those of you that aren’t NASCAR fans, Jimmie’s car number is 48). Jimmie’s foundation is selling t-shirts to honor the helmet/charities and all proceeds of the sale of t-shirts will be sent to the 12 charities. This media member nominated the Susan G. Komen for the Cure Greater Atlanta in my honor and I was extremely touched and grateful that he did that. See full story: http://www.jimmiejohnsonfoundation.org/News/News-Archives/Final-Two-Charities-Selected-for-Helmet-of-Hope.aspx. The t-shirts are $10.00 and you can visit here if you are interested in buying one: http://www.jimmiejohnsonfoundation.org/Events/Helmet-of-Hope.aspx.

Thanks to everyone keeping up with me and sending all the love, support and well wishes.

Love you all!

Marcy

Seriously?!

It’s kind of ironic that I start out my blog with “Seriously?!” this time, since it’s exactly one week before one of my favorite shows, Grey’s Anatomy, comes back on. If you watch Grey’s Anatomy, you know they use the word seriously seriously too much.

I had updated you on the two new blood clots in the last blog and the shots I’m giving myself. Unfortunately, the shots haven’t gotten any easier – it still sucks to do it and the clot pains not subsided yet. I’m hoping for some relief there soon. The doctors say 2-3 weeks for the swelling and pain to go away and four to six months for them to actually heal.

I was eager to see if this new regimen, Taxol, would be easier. It started off well on Thursday (day of treatment) and Friday, but by Saturday, I started to feel bad. Good news is the nausea is not as bad. I usually feel really nauseas in the morning, sometimes to the point of dry heaving, but I make sure I eat first thing and I’m okay. If I start to feel queasy through the day, I just make sure I eat something and it usually subsides. The bad news about Taxol is it is giving me horrid body aches. And when I say body aches, it is from head to toe --- joints, muscles, everything. Only thing I can try to relate it to is if someone ran a marathon that they never trained for and finished the whole thing (which is impossible I know), but how sore you would be the next day. It hurts to walk, to move and is just plain miserable. Thus far on this first treatment, it lasted five days. My doctors have upped my pain medicine to try to manage through it, so hopefully it will be more tolerable the next cycle. Who knows?

I had to go back to my oncologist yesterday to get my blood levels checked. They were extremely low, so I had to get a blood transfusion – first one of my life. Anemia can be a side effect of chemo and guess what? I got it! It seems that if there is a side effect, I’m bound to get it. Yesterday was very long -- we got to the doctor at 7:45 a.m. and we didn’t leave the hospital until 4 p.m. On a positive note, my mom said I looked better after the transfusion with some color in my face. I’m hoping it will improve my energy level. When I told a friend of mine who is a nurse what my blood levels were, she couldn’t believe how low it was and said it was no wonder why I had no energy at all.

I started crying with my oncologist told me I had anemia. (This is when I was like, Seriously?! What next!!!!) I just couldn’t understand why I continue to have side effect after side effect and complication after complication. All she said was some people are just very sensitive and I’m just one of those people. She was very sympathetic and said she was very sorry that I was having such a hard time. She said some people breeze through it and it’s not that bad and I’m one of those patients whose body just can’t handle it well.

At this point, the only thing that keeps me positive is that I have three more treatments and I’m done. THREE MORE! I’m over halfway and if I can just manage through seven more weeks, I’ll be done with the worst part of treatment. There’s plenty more to come, but I believe that if I’ve been able to get through chemo, everything else I’ve got to do can’t be anywhere near as painful.

Next up is meeting with the plastic surgeon that will be involved in my mastectomy surgery and will do the reconstruction. I’ve heard from a couple of breast cancer survivors that he’s the rock star of breast reconstruction, so I think I’m in good hands.

I pray that next week I’ll get a bit of a break and have a few days of feeling better – praying that the body aches go away, the blood transfusion makes me feel better and the blood clot pain starts to decrease.

That’s all I have for now and let’s hope I don’t have anymore of those unexpected “Seriously?!” moments.

With love,
Marcy

Blood Clot, Booster, Birthday, Boobs and Blood Count

I had my last “Red Devil” treatment on August 27 and I had hoped it would go similar to the third chemo treatment cycle – 10 days of feeling bad and then break of four days of feeling somewhat well. However, I wasn’t so lucky this time. For starters, my doctor put me on Tamiflu, a flu prevention medicine so I wouldn’t get sick since my immune system is weakened. One of Tamiflu’s side effects is nausea, so I was nauseas those four days that would’ve normally been my “good days.” I was also in pain those days with pain in my right arm – symptoms similar to the first blood clot. I went to the doctor on Tuesday, Sept. 8 and was diagnosed with another blood clot. Even on the blood thinner medicine, I still managed to clot in two places in my upper right arm and armpit area and the doctors can’t seem to explain why this is happening. When my oncologist came into to the office to tell me, he had this look on his face that said, “You’re not going to like this news.” So I said to him, “Give me the bad news.” He said, “We are taking you off the blood thinner pills and you’re going to have to go to daily injections for 90 days.” At that point, I started crying. I’ve had a life long fear of needles and the last time I was on the blood thinner shots, I had to rely on my dad and two girlfriends to get me through the 10 days the doctor had me on them. However, when the doctor said 90 days, I knew I couldn’t rely on anyone but myself, which made my cry harder. I had to overcome this fear to take care of myself. I use the analogy of a person with an extreme fear of heights having to jump out of burning building. You realize you have no choice – no choice but to do what you have to do to take care of yourself. I had the sweetest nurse at the doctor’s office that helped me through it. Initially, she said she was going to show me how to do it and I said no that I needed to do it myself. When she came in the room with the shot, I said to her, “Give it to me.” I opened the packaging, prepared the shot, stared at the needle for the longest time and when it came time to stick myself, it took my quite awhile to get up the nerve to stick myself. I was really proud of myself for doing it. I overcame my fear because I had no other option but to do so. I’m still in pain with the clot, managing it with pain meds again.

I also stayed home from the race last weekend – the doctor would not allow me to work due to my weakened immune system. It was difficult. I still worked from home – handling phone calls and putting out fires while out the house. I also watched every hour of the TV broadcasts all weekend to feel like I was there. I’ll be honest, it was hard. On Saturday night, when they did the flyover and national anthem, I started crying. I wanted to be there so badly. You put so many months of work into one of these weekends and not to be able to be there to see the fruits of your labor is disappointing. It was hard especially, since it was a successful weekend and not to be there for our inaugural event. I’m proud of my team for all they did and can’t thank my counterpart from my sister track who came in for a week to stand in for me. I’m blessed to work with such amazing people.

Chemo thus far has not been easy for me. In two months, I’ve had four good days and it is disappointing. I’ve had days full of tears because it just gets to me that I feel bad so often. It’s also hard feeling like you are in prison of sorts. I go to work and I go home. I never get to go anywhere. I’ve eaten out in a restaurant four times in two months and the bulk of my time I spend at home. I’m thankful for the friends that come over and keep me company and help me with meals, chores, etc. With chemo, the more you rest your body, the better off you are – the more you tax it, the more exhausted you get, which usually results in lots of tears and exhaustion. It amazes me how much sleep my body needs.

Wednesday was my birthday – 09/09/09 – a once in a lifetime birthday called a “golden birthday” that I wish I could’ve celebrated in a big way, but I’m took sick to do so. I’m wondering if there is some hidden message that I had my once in a lifetime birthday while going through a once in a lifetime health battle. Maybe I will be enlightened at some point.

I also met with my breast surgeon on Wednesday. We went over my test results to see how the size of my cancer is shrinking from the chemo and we got great news. Everything is shrinking really well and she was pleased with the progress. We set a surgery date for the mastectomy – November 17. I will spend about 2 days in the hospital recovering and 2 weeks at home. She explained how they determine during the surgery how many lymph nodes are affected with cancer, which determines how many they remove. How many they remove will also determine if I’ll have to battle lymphedema after surgery; let’s hope I don’t. We also picked a plastic surgeon that will be involved with the mastectomy surgery, putting in the extenders to stretch my skin and then will also do the reconstruction once I’m healed, sometime in 2010. The extender part is weird. I’ll start out flat following the mastectomy and little by little they will inflate the extenders to stretch my skin and muscles. I think this process will be strange and I’m sure I’ll feel self-conscious during this process. It will be an awkward time for me as I’ll have no boobs and my hair will be growing out at the same time, so I’m sure I’ll struggle with self-image and feeling pretty during that part of my recovery. I’m hoping by the time the reconstruction happens, my hair will have grown out some and I’ll start to feel like a confident, attractive woman again. Right now, I feel so bad, I don’t care how I look to be honest, but I know feeling attractive will be an issue later on.

Yesterday was my first Taxol chemo treatment – No. 5 of 8, so we’re moving along! Chemo will be done by the end of October, so I’m counting down. The nausea does not seem as bad on Taxol, and the first treatment took six hours to administer, because there is serious concern for allergic reaction on Taxol. Fortunately, yesterday went smoothly without any issue. Some of the most common side effects on Taxol are allergic reaction, numbness in fingertips and toes, plus brittleness of your nails, so far as they could even fall off. Please pray for me that I won’t experience any of those side effects. The doctors still say I will battle fatigue, but I can handle that if I can get rid of the nausea. My doctor also told me yesterday that my blood counts are very low. I have to go in next week to get them tested again if they are still low, I will have to get a blood transfusion, so please pray that my blood counts improve.

Thank you everyone again for your love, support, encouragement and birthday wishes.

With love,
Marcy