Thursday, October 8, 2009

So, on October 7th, I got my Porta cath put in. This is the semi-permanent IV like thing that they will use for my chemo therapy treatments.

My wonderful mom came up to watch the kids. My hubby is a teacher and had to go in early that morning to write sub plans (bless his heart, he’s going to be writing a lot of those), so I got the kids up and out the door. Being very careful not to eat or drink anything was the hardest part, and having the normal routine in the morning was very helpful. When hubby got home I showered. Then mom showed up and we went to the hospital. When we got there they said we had been bumped up, so they took us right in (again, whew! I hate waiting).

After registering and changing into the beautimus hospital gown, the OR nurse stopped in to say hi, I got an IV put in (yay! Not!) and the Anesthesiologist asked me how I wanted to be during the surgery. I told him that the surgeon had said it would only be a local, but I REALLY didn’t want to be awake to hear and feel them cutting and prodding me. He understood and said he would take care of me.

They wheeled me into the OR, and I put a warm blanket on me, and some cool compression socks. They tucked my arms in so they wouldn’t fall off the narrow bed, had me breath the oxygen, and I was out!

The next thing I remember was waking up to the Anesthesiologist telling me it went well. The anesthesia wore off quite well. When I got my tonsils out when I was younger, I remember it taking forever for my eyes to be able to focus.

So I dozed in “recovery one” for a while, then they took me to “recovery two.” This was basically where I came in initially. My hubby met up with me there. And we waited for my pain to ebb. Apparently they made two incisions. One by my collar bone to insert the port, and one on my neck to direct the tubing into the vein that goes to my heart. Dr C had told my hubby that my neck had been stiff, so I would have some bruising there. And that’s where most of my pain was, in my neck (a “hardy har” for the pun there).

I stayed in “recovery two” for quite a while, especially after a combo of pain pill and shot made me feel woozy. Since I hadn’t had more that day beyond some soda crackers and canned chicken noodle soup, and hubby hadn’t eaten since his early breakfast of frosted flakes, he treated me to a late lunch picked up from Denny’s. I had another woozy spell as we were getting there, but I stayed in the car while he brought me a takeout menu, and everything went great.

My mom had taken the kids to the park and to get ice cream, so I was able to eat my toast and soup in peace. Then they came and gave me gentle hugs and ate all the offered French fries that came with my sandwich.

I retreated to my room, while hubby ran to pick up my pain prescription, and mom made dinner. Then hubby took OB to his cello class, while I rested and watched TV in my room. I LOVE our pillow top bed.

I got through the rest of the night with no more woozy spells, and was able to take my pills at 4 hour intervals because the kids woke up around those times. Hubby got up and took care of the kids, then after they were settled, I got up and took a pill and ate a go-gurt. Yum.

The nurses said when they were checking me out I would need someone with me for 24 hours after the surgery. We hadn’t realized that, so hubby hadn’t written sub plans for Today (Thursday) as well. So arrangements were made with my mom, and then my sisters-in-law (KE, my big bro’s wife, and KA, my hubby’s little bro’s wife, who just happen to be best friends). They worked it all out, and my SIL’s came up early in the morning to hang out with me. KA walked the big kids to school, and KE took care of the little ones while she was gone and I laid down for a nap. When I woke up we ate yummy Portuguese Tacos that KE had brought, and I made chocolate Tapioca pudding for dessert. KE also oiled my sewing machine for me, and KA gave me advice on how to make the quilts I am planning for YB and YG. All in all it was a great visit, and I really appreciate everyone’s help. Especially hubby not growling last night when he found YB’s wet bed that I had forgot to change yesterday morning.

And now, I am all caught up on everything.

Oh, and here is a link for those who are interested in seeing more info about the porta-cath.

PET/CT scan Results

Monday I talked with Wanda again, the nurse in the Breast cancer office. She told me the results from the PET/CT scan. Hubby and I had been worried that since the cancer had spread to my lymph node, that had taken it on a free ride throughout my body and I'd have pockets or masses of it everywhere. But it hasn't mutated that much! So I might have some cancer on an ovary, or it could just be a cyst. So they told me to make an appointment with Dr. GG to figure that out. (Pap smear? who knows)

She also told me the result of the test for the receptors on the cancer cells. As I wrote before, they could have Estrogen, Progesterone or HER2 receptors, or none of those. Mine came back as HER2 positive, which is good, because there is a good medicine out there called herceptin (sp?) that I will take over the next year or so that will block all of those receptors on the cancer cells to keep them from hooking up with other good cells. Or something like that.

She also said to get a flu shot, and to avoid taking vitamins or herbal medicines until I check with Dr. H when he is giving me my chemo treatment, because some of these can inhibit the chemo working as well as it should.

She also said he wanted to start me on chemo a week after I get my porta-cath in. Not looking forward to that, but I am looking forward to shrinking these lumps!!

Telling People

Telling people I have Breast Cancer sucks. I hate to tell them. Seriously, I don't feel sick. If it weren't for this big ole lump (I have 1 firm breast right now, haven't had that in years, lol) and some occasional aching and the discharge (ew), I wouldn't know I had anything wrong with me.

Mainly I don’t want to tell them because it makes them sad. When I told one friend this she said “A, it’s because you are such a people pleaser!” Not that I am upset at their reactions. I mean if someone else told me they had breast cancer I would react the same way. Somehow, because it is me, I am better able to hold it together. Just ask, “what is the next step to take?” And say “Let’s do it!” I actually feel I would be more worked up about this if someone else had it. And after talking to the doctors about how we are going to beat this, and all the great friends who know someone who has beaten this or some other type of cancer (or my mom’s super friend who has beaten back THREE types of cancer at different times and still leads a great life), I know I can do this. I DON’T look forward to chemo, or major surgery, or this borg-like porta cath. But I know I can make it!

Tuesday, October 6, 2009

PET/CT scan

This was the next day, Thursday. I was supposed to go on a low carb, high protein diet starting 24 hours before the scan and not eat anything after midnight. Though they wanted me to drink as much water as possible and stay as calm as possible. No exercising (no worries there). Hubby took that day off from work, so I hid in the bedroom reading all morning while he wrangled kids. Luckily the kids had that day off too, so he didn't have to get them out the door for school. My mom came up and watched the kids so we could go.

The Pet scan is in a trailer in the parking lot of the hospital. They are very adamant in the instructions that patients are not to walk up the stairs to the trailer. They are to call when they arrive. So we did. They had a platform with a wheelchair on it, which I walked up to and sat in while I enjoyed the jerky ride up.

Then the tech had me sit and drink the CT scan drink. A chalky, berry flavored mixture that tasted great at first (because I hadn't eaten all day), but not so yummy by the time I finished it. He gave me an injection of radiated stuff (I guess). Then asked me to lay back and try to sleep, and to not listen to my ipod, if possible.

Amazingly enough I did fall asleep.

After about half an hour he took me into the PET scan room. I laid down on this long narrow table with my arms above my head. He put a blanket on me and tucked it in around my calves, and another over my arms (so thoughtful, because it was a cold day and that trailer had gaps in places.

So then one scan for the CT part of the machine, to create and outline, then a series of 4 or 5 scans with the PET part of the machine to track blood flow. These scans were staying in one spot for about 5 minutes, then suddenly moving into the machine farther for the next section. I didn't fall asleep then because I didn't want to jerk awake when the machine moved and possibly mess up a scan. I just hoped I had my eyes closed and still when they scanned my head. (heck, maybe they didn't, I don't know.)

That night my neighbor who had watched the kids brought us dinner. Rotisserie chicken, cheesy potato casserole (SUPER GOOD), veggies and rolls. If I get the recipe from her I will post it here.

The next step

So the next step was the Cancer Clinic at my local hospital. It's pretty neat; they have a group that meets early Wednesday mornings and goes over all the new cancer patients (without names, of course). As a group, the surgeons, oncologists, radiologist, etc., discuss your prognosis and decide the best course of action. Then the cancer patient comes in during the day and meets with each of their doctors. They each tell you the same cancer treatment plan, emphasizing their specialty.

First came our Surgeon, Dr. C. We were warned that he wasn't friendly, but other than not making much eye contact, he was informative, and nice enough that I'll trust him with my chest. ;) I don't think he is usually first, but gave us the full run-down. He said I would get chemo therapy first, then he would perform a mastectomy and also remove my lymph node (Lymphectomy?? Not to be confused with Nymphectomy hehehehehe). Then they may opt for more chemo therapy or just go straight to radiation. He also explained he would insert a Porta Cath. This is like a semi-permanent IV hook-up, but it is a port placed beneath the skin in the upper chest (just below the collar bone), with a tube running into veins that feed into the heart. This is the thing that made me shudder the most. If you have ever watched Star Trek the Next Generation, it made me think of a Borg. Luckily, it will be beneath the skin, so no one who doesn't know it is there will notice it, I can even go swimming! But still, it will be in there, and I'll be able to feel it (shivers!).

Then he left and in came our Radiation Doctor. I can't remember her name. She won't get me until the tail end, so it won't really matter until then anyways. She did suggest having a plastic surgeon coordinate with my surgeon so that when I have the mastectomy, they can place tissue expanders. They don't recommend doing the breast reconstruction or implants before having radiation, but the tissue expanders will be okay and set the way for regular sized boobies later on. Halfway through her visit, Dr GG came in to listen to what the doctors had to say, and for moral support. He had been in at least part of the early morning meeting.

Third was our Oncologist, Dr H. He was very friendly. He walked in and said "I know everything about your case, and we know just what to do." He explained what exact kind of breast cancer I have: Invasive Ductal Carcinoma. So the cancer cells started in a duct, overflowed from the duct, and traveled to the lymph node in my armpit. (Road trip!) This is a fairly aggressive form of cancer, but responds well to chemotherapy and the plan that they outlined. He said we were still waiting on a test to see what kind of receptors the cancer cells have. They can have Estrogen, Progesterone and/or HER2 receptors or none of those (known as triple negative). The first two I know what they are, the last I don't. They want you to have something be positive, because then they can give you medicine to block those receptors. Interesting, huh?! He said we would also do a full body scan, called a PET/CT scan, to see if the cancer had spread to anywhere else in my body. He talked about different chemo therapy options. The one that is most aggressive to my type of cancer can damage your heart, so I would have a Muga scan to determine the amount of blood flowing out of my left ventricle. More specifically, the valve between my ventricle and the artery there.

When Dr H left, Dr GG talked with us a bit about what had been said and went back to his clinic. What a nice guy!

After he left the geneticist came in and asked a bunch of family medical history questions. The interesting thing is, the only other person in my family that has had breast cancer was my dad's aunt. And since my dad is an only child, if this is an inherited genetic predisposition, it may not have shown up in his family until now.

Since my mom and both of her parents have many siblings, and only 3 out of all those and their children got breast cancer (two of whom got it from eating eggs laid by chickens eating irradiated grain), it is not likely it came from her side of the family. Anyways, she gave me a kit to take to the lab to test my blood for the genes that make me predisposed for breast cancer. She said if this comes back positive, I will have to have a double mastectomy. In theory this is okay with me because then I could get them lifted and filled to match. But, that’s also double the pain, so either way will have its benefits.

Then we talked to the office Nurse, Wanda. She is great. Nice, informative, informal, friendly. Good things when you are dealing with stressed out cancer patients all the time.

Then down to the lab to get blood drawn, and then over to set up the porta cath surgery and follow up appointment. Then home we go.

Now this took from about 9 am to 1 pm. We have great neighbors, and the one I had told about my diagnosis had this day off from work. So she watched the little kids when we left, and the bigger kids walked home to her house. She kept them while we went out to lunch to talk things over. I couldn't ask for a better friend. Of course I have a lot of friends like that, and I am sure I will be taking advantage of them for quite a while. hee hee hee

Sunday, October 4, 2009

How I got here

I gave birth to our youngest daughter (YG) and breastfed her as I did our other three children. About 8-10 months in I had a duct that just didn't seem to empty all the way, ever. But everything else seemed fine, so I ignored it. When I weaned her in June, the right breast dried right up, and the left did too, except one duct that just still felt full, but it didn't drip. And it was a little tender. I just figured it was taking its own sweet time to dry up, so no worries.

Now, usually, YG falls asleep snuggled into my right arm as I rock her to sleep. One night in August she decided to fall asleep on my left side. When I laid her down, I noticed I had a few drips and went in the bathroom to see if the last of my milk was finally expressing. Nope. It was a bloody discharge. I went in to show my husband, to ask what he thought I should do. He freaked out a little, asking me if I had ever heard of breast cancer. I smiled, and reassured him it was probably just an infection, just a no-fever mastitis, and promised I would go into the doctor the next day.

I did get into the doctor the next day, not my regular doctor, Dr. GG, but one of the 3rd year residents who is in the same clinic. The resident had another doctor come in to confirm it was mastitis, gave me a prescription for antibiotics, and had me schedule a follow up appointment for two weeks later. When I went in, it had not changed, so we figured it was a stubborn infection and he gave me another round of antibiotics, a different kind. I scheduled another appointment in a week because he said to come back if it was still there then, and I didn’t want to have his schedule be too full. It was still there, so he scheduled a mammogram and ultrasound. The next day my daughter had a checkup scheduled with Dr. GG. When she was done I explained my situation and asked if he had time to check it out as well and see if he would offer a different course of action. He concurred that I should get in for a mammogram, and made arrangements to get me in sooner.

The day of my mammogram started out completely normal. Hubby went to work, kids went to school. My mom came up to watch the kids so I could go get my appointment. I have never had a mammogram, and those little cape things are, well, interesting. I told the radiologist tech who did my mammogram that they should put a superman symbol or batman logo on the back. At least for the under 40 set. ;) Anyways, she was very nice, and the mammogram itself was not as bad as I expected. I have never been squeezed at so many different angles before. And it was interesting to look at the scans while she was setting up the machine for the next scan.

So when that was done I went back to the waiting room, where there was another lady in a cape waiting with her adult daughter. The rad tech came back into the room in a few minutes to ask if anyone had come with me today to go into the ultrasound with me. I laughingly explained that my mom had come to watch my kids so I could come without an entourage. I should have had a hint then.

When I got into the ultrasound room, the ultrasound tech did her job and went and got the Radiologist doctor. This doctor sat down and told me I probably had breast cancer, and that we would have to do an MRI to check the other breast for microscopic cancer areas, and a biopsy to confirm and find out what type. She was fairly nice about it, but straightforward, which I prefer. The first thought to run through my head was “Well, I will actually get new boobs!” This has been a wish of mine for years.

I asked her if it wasn’t cancer, what it could be. She said it really wasn’t likely it was anything else.

When we finished I sat down with a scheduler and got the MRI and biopsy scheduled (of course, Dr. GG stepped in and go them rescheduled for as quickly as possible so we could have the results in time for the next week’s cancer clinic on Wednesday). Then I changed and walked out to my car. Hubby called while I was on the way to my car to ask how it went. I hated telling him on the phone, and briefly thought about lying to him so he wouldn’t have this stress for a couple of days. But I told him, and he took it quite well. Then I had to call my mom to tell her I was coming home. She took it harder than either of us had. But hubby and I are more reserved, and I definitely didn’t mind that she was upset.

So the MRI was on Friday, and it was not comfortable. I had to lay face down, and the cushion for my head started out feeling great, but after 15 minutes in, it was killing me. But I was very good, and made it until we were all through to ask if I could move.

Then a weekend of stewing. I was sure I was going to die. I mean, it was a good size lump, what were my odds going to be? At first it didn’t seem so bad. I am secure in the fact that I will see my loved ones that have already passed away will be there to greet me when I die. But then I thought of how much of my kids’ lives I would miss. I mean, YG is not even a full year and a half old! That made me mad. And sad. But I was good at shoving that to the side and ignoring it most of the time. I did have a hard time falling asleep. Our kitchen has never been so consistently clean!

Monday was the biopsy. I was nervous about the needles and stuff. But they had me change, then brought hubby in to watch a video about the procedure with me. There was one line in the video when the Radiologist doctor in the video was talking about the possible risks and that most blood vessels are “squishy,” so they are easily healed with pressure. I wondered if that was the technical term.

Then the doctor and nurses came in to ask if we had any questions. I asked if I was going to be numbed. He assured me that I would be, and we pointed out that was the only flaw in the video.

Then hubby went back out to the waiting room, and I went back into the ultrasound room, where they used the ultrasound to locate the affected areas, and drew with markers where they would need to be going. It tickled when they marked my lymph node.

Then more waiting. Dr. GG called early Tuesday evening to tell us that it was cancer. Specifically Invasive Ductal Carcinoma. Stage 3.

And that was how I got here.