Sunday, February 22, 2009
Thursday, February 19, 2009
I was reviewing my blog and realized that it had been a while since I have posted an update on me, not just the medical stuff, but how I am doing, so that is what I'm going to do with this post...
Physically I am doing a little better. I still hurt, but not as bad. I saw a physical therapist last week and she explained to me that because of the surgery, that there is some scar tissue that has (severely) decreased my range of motion. I could lift my arm up 92 degrees, and that was it. I was given a few exercises that I perform religiously every night and morning so my arm can return to its former glory. My physical therapist, Kelly, told me that she cannot promise me pain free but can reduce my pain drastically. I do my exercises and my arm is getting better. I returned to work on Monday and am so glad. I hate waking up 30 minutes before I used to to exercises, but I love that I get to go to work and feel productive. It took me a few days to catch back up, but by Friday (tomorrow) I will be caught up and ready to begin the new week on Monday.
Emotionally I have my good days and some bad moments. I wouldn't call them bad days, just moments. I might be at work and just feel exhausted, maybe my arm has started to tingle everywhere (not in a good way) and I just want to quit, go home, get under my covers and hide. Then I think, let me just get through today and tomorrow will be better (baby steps Laurie Jo, baby steps).
I have received many cards and letters from friends that I had made all around the world. Janet-san sends me cards about once a week. I get emails from many friends just checking up on me. I even received an email from a colleague and friend of mine from Japan. His mother had lung cancer and she gave me her words of wisdom (thank you for that). It makes me feel so good to know that everyone cares so much, that I have touched everyone's life in a way that they feel so close to me (and I to them). My name has been added to many prayer circles in many different religions and I will take all the prayers I can get. I believe that it is because of those thoughts and prayers that help give the strength when I completely feel done, to take one more step and to realize that each step, no matter how small, is a baby step forward a baby step towards remission.
Remission, hmmm, haven't typed that before. Remission... I don't know if I like that word or not. A part of me knows it means that at least for the time being my cancer is healed or at bay, but I don't like the fact that that word will now be a part of my vocabulary.
Remission.... lymphadema.... cancer..... metastatic.... high risk....
All these words that will now have to be a part of my vocabulary. The last one, high risk, yeah that one really pisses me off. Not only will it be a part of my vocabulary, but because of me, it will have to be a part of my sister's and my little girl's vocabulary too for the rest of their lives.
I went wig shopping yesterday (I will post pictures for your enjoyment later), I invited my best friend to come with me, I wanted it to be a fun and exciting outing. It was nice, but every time I put on a wig, I felt like it was screaming CANCER!!!! Dani kept telling me that they looked real. But to me nothing looked real, they sure as heck didn't feel natural, the wigs were way to poufy, to thick. They felt scratchy and hot, and I felt claustrophobic wearing them. Picking a look that you will have to live with for the next year is tough. The same color, the same length, the same style for an entire year, that is of course unless you purchase another $200 - 300 wig (out of pocket, my insurance will only partially cover 1 in my lifetime) which I won't. Don't get me wrong, we did find a few that I could live with, and a few I just thought were fun to put on. The store didn't have any hot-pink wigs (my happy color), so I will have to choose from the "normal" colors. I picked two out and will bring my mom when she comes out next Wednesday to help me choose.
I am starting chemo this Thursday (one week away). I really haven't decided how I feel about that. I am scared and curious at the same time. I don't know if I should plan to be sick (plan for the worse) and be pleasantly surprised if I don't get sick, or if I should be optimistic and get the carpet pulled out from under me when I start puking all day and night. As I said, I am looking for wigs, scarves, hats and turbans all ready. I have been told to expect to loose my hair between 7-14 days after my first session. Knowing my luck I will be sitting in the chair and as soon as the chemo hits my system my hair follicles all over my body will shriek, "What the HELL is that!!" and all my hair will fall off right there in the chair! Hmmm, I wonder if that has ever happened?
Okay, so it sounds like I have a lot of bad moments... I really don't. For the most part I am getting by a little better everyday. I can now partially shave under my arm, put on my bra, drive and get dressed by myself. Tonight I was able to give Aubrey a bath by myself.
Our family mantra has become "Baby Steps." So every day when I have seen some progress but still hurt, I remind myself, "Baby Steps Laurie Jo, Baby Steps".
Wednesday, February 18, 2009
Can they do any more test on me???
Why, of course they can! I went to Suburban Hospital today for a MUGA Scan. "The MUGA scan (MUltiple Gated Acquisition scan) is an extremely useful noninvasive tool for assessing the function of the heart. The MUGA scan produces a moving image of the beating heart, and from this image several important features can be determined about the health of the cardiac ventricles (the heart’s major pumping chambers). " (that is from About.com) Dr. K (my Chemo Dr.) has to check my heart muscle's strength since the AC drug in my chemo treatment and can weaken the muscle.
They say that it doesn't hurt... And I guess the "scan" doesn't hurt, but getting stuck with needles twice (or three times in my situation) DOES! You think that after all the testing and contrast I have had, that I would be okay with needles. Nope! Not yet!
I was called in and met with the gentleman that was going to take my blood. "I hope your veins are better than everyone else I have seen today."
"What?" I asked, snatching back my arm.
"Oh, today every patient has had me earning my money."
Okay, I might have been joking with him that he only get one shot. What I was thinking was, "Well if it was EVERY PATIENT, then maybe it wasn't the patients who have had a problem!!"
Low and behold, he stuck me in my arm to get my blood, nope, no blood. He proceeded to take my blood from my hand. Then he left to mix it with a "trace amount" of radioactive isotopes with my blood and let it mix or "cook" as he put it, for 30 minutes and then proceeded to inject it back into my blood stream. This time he chose a vein in my wrist (very close to the outer bone). I was doing okay until the last few minutes of the injection and it was burning!!
Then I followed him into a lab with what looked like a CT or MRI machine. I got on the table and was pushed only went half way in, and on the outside of the machine was these two large pads that rotated around me for a little bit. That was it!
The scan was no problem, I haven't heard the results yet, but I suspect they will be fine and I will start my first chemo treatment next Thursday (Feb. 26th).
Saturday, February 14, 2009
For those of you that have not experience breast cancer (or men) might not understand this. But breasts are a large part of a woman's femininity. We have a small love affair with them.
Thursday, February 12, 2009
It is a Double-Blind study (which means neither you or your doctor know which group you are) that adds the drug Avastin to my chemo regiment. Avastin (Bevacizumab) is an IV drug that has been known to help lower the chance of recurrence of cancer in metastatic cancers (secondary cancers). The study is trying to find out if young breast cancer patients will have a lower recurrent rate for a longer period of time. It makes sense... All the studies thus far have been on older women and they don't really need to have THAT long of remission years. But since I'm only 35, I will be 40 when I am completely through with the hormone therapy treatment I still have 30-40 good years left in my for the cancer to come back.
The differences are...
During my first 4 sessions (8 weeks) it is exactly the same, they will just add the extra drug into my IV dose. During the second drug, I will have to go every week, instead of every other week for 12 weeks (instead of the original 8 weeks). At the end of my sessions, I will be unblinded and we will see which group I'm in. Here are the groups:
- You receive the placebo only (no drugs).
- You get the drug.
- You get the drug and an opportunity to stay on the drug for an additional 33 weeks, which equals 1 year).
So now I am completely conflicted. A apart of my wants to say, "HELL NO!! I just want to get through this!" But the other part of me is thinking that every woman given the opportunity said no, then we wouldn't have the life-saving drugs we have now. So after reading about the trial I made a list of my pros and cons.
- If it works (and I am not on the placebo) it could maybe lower my chances of my cancer returning.
- I could potentially help another woman in my situation in the future.
- The actual drug, Avastin, would be free. I would still pay for the original chemo drugs.
- Having to go every week for 4-5 hours to get the second round of chemo drugs, which could cause work-related issues.
- Potentially not have enough time between the 2 sessions for my white blood cells to go back up and any better.
- Side effects of just the Avastin: High blood pressure (which is prevalent all through my Mom's family), Hypertensive, Abnormal levels of protein in kidney (could cause liver damage), nose bleeds, sores in mouth and/or throat, skin changes (dryness, itching, discoloration, ulcers), watery eyes. And those are just the "highly likely" side effects. The "less likely" side effects would be blood clots, strokes or heart attacks.
- The Avastin would be paid for, any drugs that I received to help with the side effects would not, and my insurance may not pay for it because it is a clinical trial and not yet approved by the FDA for my condition.
- If while during my treatment (a full year) on Avastin, if the FDA does approve it for my condition, I would probably have to start paying for it for the remainder of the treatment.
- Since it is an IV drug, I would have to return every 3 weeks for a year to keep receiving the treatment, which means keeping the port in that long too.
- Can decrease fertility, or make a woman infertile.
So, after heavy deliberation, I decided NOT to be a part of the study. A part of me still feels bad, like I am letting the woman of the future down (who could God-forbid be one or both of my daughters). But with so many side effects, and having the predisposition for high blood pressure, I don't want to have a stroke or heart attack and leave my children without a mother. I want to help other woman, but not at the extend of my children. It may sound selfish, but I want them to grow up with a mother, and right now the original chemo schedule with do just that. So I called Dr. K and let her know that I would NOT be participating in ECOG 5103.
I had my first visit with my Medical Oncologist today. She will be handling my chemotherapy sessions and hormone therapies after my radiation. She is very nice. Everyone in the office seems GREAT!! My mom and I got to the appointment and met Nickie and Chris there. Lola (the nurse) brought me back to the exam room. I left my entourage in the waiting room until after my exam was done. Dr. K came in and examined my breast, arm and the lymph nodes in my neck. Then she want over my history, personal and medical, and asked me a few questions. She asked about having more kids. I was explaining to her that Dr. A said it wasn't a good idea after treatment and my husband and I discussed it and we don't want to chance having to go through this again, so we decided we wouldn't have anymore.
"How do you feel about that?" She asked.
"I'm okay with it, I am thankful for the girls I have." While I am telling her this I realize that I had been crying throughout the entire "kids" conversation.
"I can see that you may not be completely okay with this." She said touching my arm.
"I am getting okay with it." I said through sobs.
"The reason I ask , is most women your age do still want to have kids, or just don't like the idea of someone telling them that they can't. 80 % of women in their 30s do regain their periods. Also, many women freeze their eggs, you don't have to use them, but then when the treatment is finished (and we don't recommend getting pregnant right away, to wait for a few years) you can go to a fertility specialist to help. I can recommend a wonderful fertility specialist. You can have a conversation with him if you wold like. Know that this is an option, whether you want to take it is up to you and your husband. I won't talk about it in the room with your family, this is a personal decision between you and him."
Just then I felt a lifting of grief. I felt like whether or not we meet with the fertility specialist, whether or not we decide to freeze my eggs, WE will be able to make those decisions. WE will decide, a doctor will not decide this for me.
After this wonderful revelation and a few more questions from Dr. K, I got dressed and met Dr. K, and my family in her office. She had a nice big office and a round table to speak to us at. I loved that. Normally, we are crunched in on the other side of a desk, all trying to fit and look comfortable. So this was very nice. Dr. K gave me a packet that described my cancer and what type it is. It is same stuff that we have gone over at every appointment, but here it is again:
I have Invasive Ductal Carcinoma
Stage 3c (meaning more than 10 lymph nodes were infected)
Grade 2 (meaning invasive, medium growing)
My largest mass was 2.5 cm (the Alien), my smallest was 7mm (Bob)
The margins (area around the masses) were negative for cancer (really good news)
The Lymphatic system was invaded
Estrogen and Progesterone receptor positive (by 90% +), which is very good because they know how to kill it.
HER-2 receptor was 1+ (which is negative) but 3% of +1's are actually positive, so they shipped out my specimen again for a more detailed test (called a FISH test). Dr. K is pretty optimistic that it is not HER-2 positive, so we are going to treat it that way
17 lymph nodes had cancer
What I didn't know was that since my cancer has a medium growth activity, it has probably been growing for 2-5 years. Isn't that scary? So while I was pregnant with both my daughters this cancer was inside me.
Okay, down to treatment...
Since my age (young) and health is good (okay relatively good, hahaha) I will have a more aggressive aproach to the cancer. I will be on the 3rd Generation Regimen (also called Dose Dense).
I will be given a combination of two IV drugs for the first 8 weeks. The drugs are Adriamycin and Cytoxan (also known as AC). I will receive them every 2 weeks (so 4 sessions). Each session (when I get the drugs) it will take approximately 3 hours per dose. I know that you all are wondering about the side effects (I was) so here we go...
- Hair loss (2 weeks after 1st dose)
- Nausea / vomiting (1st 3 days after each dose)
- Lowering of blood counts (I will be given an injection the day after treatment of Neulasta that will bring my white cells back up quicker (but causes bone pain, because it makes your bone marrow work on overdrive).
- "Chemo-Brain" (cognitive changes, I think similar to pregnancy-brain)
- Less than 1% incidence of Leukemia
- 20% of women to not regain their periods and get sent into Menopause
- weakening of heart muscle (I am having a MUGA scan to make sure my heart can take it)
Side note: I couldn't figure out what she was saying. I thought it was a Muggle scan, like in Harry Potter... Ooops!
After the 4 sessions (8 weeks), I will be started on a new IV drug called Taxo. Like the AC, I will get one dose every other week for 4 weeks (8 weeks as well). This drug will take 4-5 hours per dose. There is a different side effects for this drug.
- Total hair loss (eyebrows and eyelashes)
- There can be an allergic reaction during the time of infusion (with each dose). It is kind of an anaphylactic shock reaction, which I am reassured that the nurses will be watching me like a hawk to remedy any reaction that I may have.
- Numbness and tingling in my fingers and toes (which might not go away after treatment if I don't bring attention to them with my doctor).
- Muscle aches and pains
- Nail changes
That is 16 weeks total. Three weeks after chemo I will start radiation (see radiation post). After radiation I will be put on Tamoxifin for at least 5 years if not more (due to my young age).
Whew!! If that was not enough I am eligible for become part of a double blind trial. (Where both the doctor and the patient do not know if you are taking the drug or a placebo). She went over the trial (I will go itno detail in a different post) and gave me some info to read and to decide whether or not I wanted to join the study.
After all the explanations, Dr. K asked if I wanted a port put in. Due to the IV drugs, it is really bad on the veins to have the IV inserted at every session (not to mention painful), so she suggested that if I have crappy veins, I should consider having a port put in. I asked to see it, so she brought me to the "Chemo Suite". This room was a large room with probably 6-7 recliners. There were a few ladies (older women with no hair) receiving their treatments. I was introduced to Jennifer who will be my Oncology Nurse. She was very nice and showed me a book that showed what the "Power Port" looks like, but put another page over top of it and it showed me what it would look and feel like over the skin. It is A LOT bigger than I thought it would be. it is probably a 1/2 inch square and 1/4 inch deep. It will be put in under my skin around the area of my right collarbone. They will need to puncture the skin every time that they give me the drugs, but I will have a prescription for some numbing creme that I am to "goop" on before every visit. Being that every Tech has complained about my veins since finding out I have cancer, I opted for the port.
Okay, the timing...
I will be going in on Monday at 11:30am for my MUGA scan (this is the one to check my heart muscle before chemo treatments). This should not hurt (other than the IV).
On February 26, I need to be at the hospital at 7:30 in the morning and they will put in my port. There will be local anesthesia and maybe IV sedation (if I have anything to do about it, there WILL be IV sedation). After I am released from the hospital I will be driven to Dr. K's office and start my first chemo session. They will even leave the needle in at the hospital so they can use it for my treatment (how convenient).
I think that is about it. I will go over the clinical trial in another post (after I read more about it), and what my decision is.
Monday, February 9, 2009
Because of the fact that 17 out of 25 of my lymph nodes dissected had cancer, my doctor sent me to get a full body PET CT. This would "light up" any other part of my body (organs or lymph nodes) that could possibly have cancer. Of course the chemo works systemically (through my body through blood) so it should kill the rogue cancer cells, but they wanted to check because more lymph nodes were infected that we first thought. So on Friday at 1pm was my PET CT.
I got two containers of Barium a couple of day prior to my exam and kept them in my refrigerator (I was told they tasted better when they were cold). My flavor choices were berries, orange cream, vanilla or banana. I chose banana. After my first post-op appointment at Dr. A's (see previous post) I cracked open the first container and at 11:30am drank half. I asked my mom if she wanted to go to the mall for a couple of hours since my exam wasn't until 1pm. Nope, she said for two reasons... 1) She wasn't going to drive anywhere, so unless we could walk she wasn't going; and 2) Just in case the Barium gave me diarrhea, she wanted us to be in a place where we had restrooms close by. So we ended up sitting in the lobby of Suburban Outpatient Hospital for two hours. While there we were joking about blog and brainstorming ideas when a lady next to us interrupted our conversation...
"I take it, from overhearing you, you have breast cancer?"
"Yes, I just had surgery." I said to her.
"I am just so sick and tired of people asking,"How are you feeling?" How the heck do you think I am feeling. I am dizzy, I get nauseous, I puke all the time and am lucky if I get one meal down. What do you say to these people."
"What do you tell them Laurie Jo?" My mom asked.
"Like CRAP!" I said.
"You say that?" She asked me.
"Yup. Two things happen, people will either stop asking or avoid you all together, then you don't have to answer that anymore!" We all laughed.
She told me that she had she had Stage 1 breast cancer and although she didn't have cancer in her lymph nodes, she was tested for OncoDX (a new test to show percentage of recurrence) and required her to have chemo anyways. She only had to do 4 sessions of chemo and had only two left. She wished me well and left. Mom and I both agreed that she had a wig on. She only had four sessions, two were finished and had already lost her hair. How long would it be until I had no hair?
I drank my Barium at noon, 12:30, and 1pm. By the time the 1pm drinking came up, we were waiting in the Radiology waiting room and I was SICK of banana!!! Why can't they shake it up a bit and give me one banana, one berry. I don't know, but I felt nauseous. A tech called my name, his name was Brian. I asked him if we were going to have to get undressed (I still cannot get dressed by myself and my mom was there to assist me)?
Brian looked at me funny and said, "Well I don't think "we" will get undressed, I really don't feel like we know each other well enough, but maybe next time." He winked at me.
"No, I mean if I need to take anything off, I will need my Mom's help." It is not often that I get flustered.
"Yeah, bring her in." He smiled.
My Mom and I followed Brian to the changing rooms. He stopped at a door with a radioactive sign on it, "This is very important, this is only your bathroom. You can only use this bathroom and no one else can use it." What the hell were they going to do to me??? Brian brought us to the changing area. I could keep my clothes on (and left my jewelry at home) but I had to take off my bra. So Mom helped me and once done, Brian brought me to another "Radioactive Room" This was my quiet room. Brian explained to me about the test...
"We are going to do a function study test. This is to see if there are any lesions anywhere in your organs. The lining is so thin that the Barium coats everything in your digestive track to get a better view on where the lesions are. I will be giving you a radioactive contrast that will light up if the cancer is anywhere else in your body. You are to be very bored today. I am going to give you the contrast in the IV and then you will sit here for 45 minutes doing absolutely nothing. No reading, no opening the blinds to look out the window, no cell phone talk, that way the contrast will distribute equally throughout the body. Then we will do the scan." Brian brought in the radioactive box that holds the radio-acive material. He told me that the box (which I saw on the last episode on House) was called a coffin. Well the seems appropriate huh? He thought it was poor form. I thought it was funny.
After Brian put in my IV and injected me with the radio-active material, he took out the IV and wrapped up my arm. During my 45 minutes to do "nothing" I took a nap. Then he came back and brought me to the PET CT room. There was a tube-like machine that looked very much like a MRI machine. But his one had a long bench that had a head-holder/clamp. He figured out that due to me recent surgery I would not be able to lift my hands above my head. I laid on the bench and Brian gave me a pillow that I wrapped my arms around the pillow then he strapped me in. I was pushed through the machine and then the machine was calibrated. Then I was pushed all the way through and the scan started at my feet and every 5 minutes I would automatically get pulled through the scan until my whole body had been scanned.
You know there is really nothing to think about when you are just laying there with your eyes closed (you don't want to open your eyes cause the tube is so closed in). So my mind started rambling on it's own. First I prayed for a friend of mine, Julie. Because of my current situation, she went in for a mammogram and was called back for a follow-up.
Side-note: Julie is fine, when they did her first mammogram some breast tissue folded up on itself, when they did it again, it was fine (thank goodness).
Then I started thinking of "what ifs". What if half my body lights up? What if they tell me that I only have six more months to live? What would I do? Oh my goodness, I need to write all my requests down. But who would I give it to? Hmmm. I couldn't give it to Chris, my mom or his mom, they would be completely distressed. I could give it to my sister, but what if she cannot afford to come out (which she later told me she would mortgage her house to come out here). What would I put in the letter? The table moved again, so I was further in the machine. The light around me was getting darker and darker. Keep yours eyes closed. Keep your eyes closed.
Oh I would definitely have to put in what I want to wear for the viewing. I wouldn't want Chris to pick it out (it might not match, hahaha). My wedding dress? No, I want my girls to wear it when they get married. What about the teal and brown shirt I wore for my baby's baptism? Then it hit me... I want to be cremated, do they dress you when you get cremated or just do it naked? Once cremated, what do I want to with my ashes? I know I don't want to be buried. I think I want to be put in a urn and have Chris keep me with him and the girls. When my Grandpa passed away, there was a set of six little urns (my sister called them chachkis). That would work for me. Everyone could have one, Chris, the girls, my sister, my Mom and Dad. But what about everyone else?
The table moved again. What if I got little vials and put a ashes in each one, then make them into key chains. I could put a little metal tag on them. One side would say, "In memory of Laurie Jo N___, 1973 - 20__" The other side would say, "You wanna piece of me?" My sister suggested, "A little piece of ash" hahahah I like them both. It was funny. Here I was deciding on what music I would want played at my funeral, and it wasn't wasn't morbid (okay it WAS morbid), but I wasn't sad, I wasn't upset, it was actually kind of calming.
The table moved again. "Only five more minutes. Laurie Jo and then it will be done." I had to take a deep breath, don't open your eyes, don't open your eyes. I want Chris to get a tatoo of my face on his body. I want him to always remember me and every other woman in his life to know me. Oh, and I want him to put on the back window of his truck one of those "In memory of stickers." Hahaha.
After the exam I got dressed and it was over. It wasn't so bad. I should find out my results on Tuesday at my Chemotherapy Consultation.
I shared my thoughts with my sister and she put in for a chachkies. Any other takers? A key chain or chachki?
I was told that the next time I go in for a test like that, I will be given a list of other things to think about.... hahaha.
Oh my Friday was busy. I woke up early to start working (I am a medical coder and even though I normally don't work from home, my employer is letting do what I can at home to keep up and so I won't take anymore time off). At about 10:15am my mom and I left to go see my surgeon, Dr. A. I was hoping to get my drain removed today.
My mom is so funny. She drives, but I wouldn't consider her a "driver". She doesn't like to drive outside her town of 1200 (she has my dad who does all the driving, so why would she need to), but she HATES driving in Maryland. I know she sounds like one of those little old ladies that is a terror behind the wheel (she is absolutely not), but driving in Maryland (DC) traffic is very nerve racking for her. So we left 1 hour and 15 minutes early to get to my appointment 35 minutes away. I basically lied to her and told her that we were in Gaithersburg, when actually we were in Bethesda (big difference in traffic), but she gets me there every time (be it 30 minutes early, but by god we get there!!)
Nickie (my Mother-in-law) also met us there. Dr. A saw us early. Brought all of us to the exam room where I stripped down (nope, no more modesty here) and I wrapped the paper sheet around me. Dr. A came in and checked out my incisions. She decided she could remove the tape under my arm and on my breast. I don't know what hurt worse under my arm, her pulling the tape off the incision or pulling the tape off of my underarm hair (I have not been able to shave for about a week-yuck!!) She was very concerned about the fact I that I could not lift my arm above a 90 degree angle and gave me a referral for physical therapy. She wanted me to make another appointment to see her in 10 days (after having physical therapy for a week), but she thought that the incision looked "pretty" (at least it was healing).
She pulled the tape off on the incision on my breast. This wasn't as "pretty", there were a few areas that the edges did not heal so I was seeping in certain areas. She put on a gauze bandage and was on her way.
Anne removed the drain. She came in and took off the plug that connected to the drain. Then she took a syringe and connected it to the bottom of the tube and sucked out all the gook. I call it gook, it was nasty! There was yellow fluid, blood and some chunks.... gross. It didn't hurt, but I could feel it getting sucked out of my arm. By this time I was completely leaning on my mom. Anne then snipped the stitch that was holding the tube in, that pinched. She then cut the tube and took a set of needle-nose pliers to take out the tube. Of course I didn't see this, Mom told me later (thank goodness, I would have either fainted or puked on her). When it was time to remove the drain, Anne told me to take three deep breaths. On the last breath she counted, "One," and she pulled it 1/2 way out, "and two" she pulled it the rest of her way out. It didn't hurt exactly, just felt totally different and strange, but by then the damage had been done. I had to lay on the table, which hurt cause my arm was on a hard surface, it was either that or fall over on top of my mom. Finally after a few deep breaths I felt okay enough to sit up.
When we left the exam room I made another appointment for February 20th, so hopefully I will have more use of my arm. It was 11:30am (the time my appointment was suppose to occur). I had to open the first of my two containers of Barium (banana flavored) for my next appointment at 1:00pm... But that is another blog.
Wednesday, February 4, 2009
When you have cancer, you end up having a LOT of doctors. Trying to keep them straight is difficult for anyone that doesn't have cancer. So let me try to break down the process for you....
I have my Midwife who found the cancer.
She turned my case over to my surgeon, Dr. A.
Pathology dictates who I see next. If my lymph nodes have cancer then I need a Medical Oncologist who does the Chemotherapy.
When Chemo is finished, I have a Radiation Oncologist.
After radiation, I go back to my Medical Oncologist (Chemo doctor) to start any hormone therapies.
When that is all done, I should be able to go back to my midwife.... hopefully.
Today I met with the Radiology Oncologist for the first time (Remember we were not figuring that my cancer had spread to the lymph nodes, so I didn't think I had to make an appointment with the chemo doctor.. but as you all know now. We were wrong). None the less, I had made this appointment so we were going.
It snowed last night and there was snow all over the ground. Thank goodness we decided to leave my car with Chris' parents and he drive us in. My mom (who had come to take care of me for two weeks HATES to drive in MD, so rush hour and the snow would not have helped). After driving for 1 hour and 45 minutes, we finally made it to the doctor's office.When I met with Dr. S this morning. I found out that my case had been discussed earlier at a Breast Conference with my "Team" (Surgeon, Oncology, Radiation, Pathology, and my Breast Liaison). That was good. She was able to go over a lot of helpful information.
The margins of my lumpectomy were negative for cancer (that is GREAT news, it means they got it all). But 17 out of the 25 lymph nodes they took out were positive for cancer. A shock to everyone including my surgeon. Because of this a few things happened...
1. I would now have to see the medical oncologist (Chemo Dr.) first and go through Chemotherapy before I would have radiation.
2. My cancer was re-staged due to the spreading... The tumor size itself would put me at Stage 2, but since more than 10 lymph nodes were infected, my cancer was now a stage 3C. Damn that sounds horrible. The next stage is 4!! That is the worst!!
Dr. S did say that even though stage 3C sounded horrible, my biology was actually quite good. Since I didn't have any risk factors (age, immediate family with history of breast cancer, etc), my cancer is HER-2 negative, and it was Estrogen and Progesterone Receptive positive there were going to be a lot of different options for me when I get to chemo and they were pretty confident that I would survive.
I was scheduled for a total body PET CT to see if cancer shows up in any other organ on lymph nodes. This is being done on Friday.
She explained that about three weeks after chemotherapy I would need 5 weeks of radiation, 5 days a week, on the whole breast.
Then the last week, she would do a "boost" on just the lumpectomy site.
Dr. S said that I was really fortunate that I was able to get a lumpectomy. Since my lymph nodes were infected I would get radiation even if I got a mastectomy. Having the breast tissue makes it easier on my when it is time for radiation. I can tell you that I would be really PISSED if I had opted for a mastectomy so I wouldn't get radiation and ended up with it anyways!
All in all Dr. S was really nice and the side effects of radiation (sunburn and fatigue) seem like cake after getting through with chemo.
I would just like to stop hurting. I am still in so much pain in and under my arm. My breast has decided to come to the pain party too, so it is just hell. All the doctors have told me that after I make that turn, it is amazing how fast I will heal... Can anyone tell my where that turn is?? Cause this is killing me!!!!