A Long Journey About to Begin....

I am writing this blog to keep a record of my journey from start to wherever it may go...in the hopes that it will be informative for anyone who is diagnosed with breast cancer, and in particular, invasive lobular carcinoma with metastasized lymph node involvement. I am estrogen positive, progesterone negative, and HER2+ equivocal. HER2 positive means it's a faster growing aggressive breast cancer that tests positive for a protein called the human epidermal growth factor receptor.  

I am not in the medical field, nor do I intend to promote or advocate any kind of treatment. I just want to share my experiences with the start of this difficult journey in hopes that it will encourage women to get tested, have their mammograms, and do whatever they need to do to proceed. It is a different journey for everyone.

A little bit about me....I'm 74 years old. I've been very healthy all my life. I was a special education teacher for 31 years and I have been subbing for the last ten years in grades K-4 and special ed.  I love my job! I exercised a lot over the years. I played soccer in my 40's, I played racquetball. I swam, I hiked, never smoked, but I did drink more than I should have in my thirties, loved to dance every week in my 30's and 40's---single for 25 years roughly, then met a wonderful guy in my 60's who I have been with for the past 16 years.

As part of my 60's, when I retired, we were full time RVers for three years, we then came off the road, bought a house, and lived in Bradenton FL for seven years. Then we went back out on the road for another three years in another RV and I hiked every chance I got all over the United States. When we came off the road two years ago, I took up bike riding--15-30 miles a week on a local bike trail and occasional swimming at the local Y. 

Did I eat as well as I exercised? Oh, no....I have been a HUGE red meat eater all my life. I bet I have had beef at least 5 times a week and have for 70 years. (That's super bad also, I know.) Big dietary changes are in the works. I don't drink milk but I ate a LOT of full fat dairy to make up for it. I should have been a Wisconsin cheesehead, I love cheese so much. Blue cheese is my favorite. I also don't drink coffee but for the last year or so, drank a  Mexican Coke every morning for breakfast along with eggs and bacon several times a week. (Mexican Coke supposedly has no high fructose corn syrup and just tastes a whole lot better in my humble opinion). That's my "coffee"....(That's gotta change, too.) The other thing I have found out since this horrible diagnosis came through is that vitamin D deficiency has a possible link to breast cancer. I have been low for the past couple of years and the doctor wanted me to take supplements which helped, but I haven't been consistent in taking it. Not sure what the cause of the cancer is, but I'm sure diet played a big role. No matter, it's here, and I have to deal with the consequences of my lifestyle if that's why I got it.

Family history of cancer? Yes....my sister...she has had it three times (!) and after a double mastectomy in 2012, she is now in her 80's and doing very well. She had three different kinds from mine, we share the same mother, but not fathers. My father had lung cancer (heavy smoker for many years) and skin cancer (he was a big sun worshipper), and he was an alcoholic.

No other breast cancer in relatives that we know of. I am currently undergoing genetic testing because the oncologist says that will help guide the treatment and it will help my daughters. 

I had regular mammograms every year religiously until late 60's and early 70's when we started traveling full time in an RV. I didn't have one for about three years while on the road, then one in FL, back out on  the road, skipped another three years having them, then went and had one a year ago as we came permanently off the road. They always tell me "you have extremely dense breasts" and that my mammogram is hard to read. The last two mammograms I had to push for a "diagnostic" mammogram because mine are so hard to read and nothing showed up that they needed to call me back. In hindsight, I think I would have pushed for an ultrasound or an MRI, but think insurance doesn't cover that. They should those additional tests for dense breasts because many cancers are missed until they become large, which is what happened to me.

I had a red flag six months ago, which I ignored out of lack of knowledge. I had some kind of light discharge (from the nipple?) I didn't know! There was pink color (blood I now suspect) in my bra. I didn't think it was blood, it was so light and didn't even dampen my bra, but it did tinge the bra lining. Dummy me, I thought I had perhaps sweat a lot exercising while riding my bike and it was dye from a shirt? I didn't see anything wrong with my breast/nipple at the time. I thought well, if it happens again, I will make a doctor's appointment. It didn't. So I forgot about it. Until the week beforeThanksgiving.

I got up one morning and there was a discoloration on my left breast. It was in the shape of small arc. Again, I thought, gee, did I bruise myself leaning over my bike handle the day before? I didn't think too much about it. The next day, my breast was a little swollen and the arc had increased to halfway around the breast. There was discoloration almost like a bruise.The nipple was starting to retract a bit due to the swelling. I knew that was a bad sign so I called and made an appointment to see my family doctor. When I went in, a day later, she checked for nipple discharge, there was none, but she said you need to get a mammogram as soon as possible. 

In I went, within a couple of days, and the mammogram showed a large mass of "at least 16 mm" right behind the nipple and suspicious lymph node involvement. An ultrasound followed the same day and now two suspicious malignancies were confirmed, one in the breast and one in a lymph node.   A biopsy followed in the same week and then I had a confirmed diagnosis....invasive lobular carcinoma with metastasized lymph nodes, stage 3. The wheels were turning quickly. By this time it was the second week of December, and I had a special trip planned to go see my daughter in Texas on Dec. 20th. I was not going to miss that. But first, I met with a nurse navigator at our local hospital in Elkhart. She helps coordinate and plan all the needed tests and gives recommendations for doctors. I needed an oncologist and a surgeon.

I found the surgeon quickly, and liked her very much. The oncologist was another story. The first one recommended I did not like--he was cold, statistical, and just not someone I could connect with, and he tried to scare the bejeezus out of me into doing something I was not ready for. Apparently, the cancer is spreading so fast, he wanted me to start chemo the same week, the very next day as a matter of fact. I had four days until it was time to go to see my daughter for just three days and I chose to delay chemo till after I got back. I knew that was probably shortening my life, but it was important to me to see family before starting the chemo journey. He was not understanding my point of view, nor would he accept it so I quickly found another oncologist within two days who understands where I'm coming from. I feel confident and secure knowing the second doctor is supporting my decisions about my life! He's the total opposite of the first one and my kind of doctor. He is very up to date on the latest treatments and gave me excellent notes about my path to follow. I told him I'm interested in quality of life over quantity.

So far, I have had the mammogram, a breast ultrasound, a brain MRI, (no lesions yet in the brain), an ultrasound on my elbow on the bad left side for a suspected blood clot--there wasn't one, and a full body PET scan. The pet scan revealed that the cancer has spread beyond the lymph nodes but still in the breast tissue. No organs are involved, YET.

December 18th I had the chemo port placed. I was under anesthesia for the procedure which took about an hour. I came out of anesthesia quickly. It's been a week since I have had it placed and it is still quite swollen, but healing. December 19th I had the full body PET scan. You have to follow a ZERO carb, ZERO sugar diet for 24 hours before they do the scan. I am pre-diabetic, so I had to be extra careful about that. If your sugar level is over 200, they cannot do the scan. I was at 156, and it dropped later that day, so it was a go. They test your sugar at the hospital to be certain.

They could not use the port entry, it was so swollen from surgery the day before, so they used an IV line. You are injected with a radioactive glucose solution and it has to circulate in your body for about 45minutes to an hour, before they do the scan.  The cancer cells are attracted to the glucose and will concentrate in the cancerous areas if it has traveled to other parts of your body.The actual scan took about 20 minutes I believe. The preparation of injecting the dye and testing made it over two hours by the time I was done. It's in a machine like the MRI machine, you are fully enclosed in it after they move you into it. I close my eyes before they "insert" me, and keep them closed so it won't bother me. I also listened to spa music to stay calm and relax.

The last test before chemo? An echo cardiogram of my heart. Haven't had the official read from the doctor on that one, but as far as I can tell, things look ok. First chemo treatment is January 7th. 

How am I doing? From minute to minute it changes, and sometimes it's all I can think about. Other times I can go for long periods of time and feel "normal". I am having some pain twinges in the breast, and other weird, sharp pains in other places in my body, then I panic and go down the rabbit hole of "oh, my god, it's elsewhere in my body". I am controlling the pain with Tylenol for now. It seems to help. My joints--hips and knees are hurting more than they ever have this past year. I don't know why that is. Mentally, I'm a hot mess. I wish I could still teach because it helped me focus on other things during the day. I have way too much time to think right now. (I had to give up a wonderful, well paying teaching job that I loved because of treatment and that was really hard). Worrying about finances and insurance coverage is in the mix, too. But I have good insurance, a supplemental plan besides Medicare so that is a bit of relief till the bills come piling in.

For someone who is completely shocked that I got one of the worst kinds of breast cancer, it's been really hard not going down the rabbit hole at any given time. At first I cried a lot and had no idea when that would happen. Somebody could say something nice and the waterfall would start. I think a lot about my mortality, which is a good thing, because it's time to get things in order. Things are not looking good right now. The doctor said if I do nothing (I asked) it would be 4-5 months. For stage 4, the best they can do is try to control it. At this point, I'm not even sure it can be controlled, because it has spread into nearby tissues. I'm the kind of person who keeps most things inside and fiercely independent. I don't want to ask anybody for help, and I don't want to have to be taken care of. I will have to change my perspective. But it sure is scary to think that your time is closing more rapidly here on earth that you thought it was going to be. 

How am I getting ready for chemo treatment? I have cut my hair down to a half inch all over to prepare myself for going bald. It didn't help that the pizza delivery guy thought I was a man when I answered the door this evening! I'm sure that right around the second treatment, when my hair really falls out and I have to shave and go bald, I will cry once again. I'm not a crier, and I hate it that I'm falling apart so easily, but that's to be expected! I need to cut myself some slack!

Another one of the best things I did for myself was become a member of the breast cancer support group on Facebook. It's called "Breast Cancer Support-We Can Do This Together!" The gals on there are wonderful, there is NO negativity, no bullying, and it's really helped me not feel so alone. 

One of the hardest things is, you let your family and friends know you have cancer, they are sympathetic, loving, offer to help, and they do what they can when they can. Then they have to go back to their lives, because that's what they need to do! And that helps create some normalcy around a very NOT normal life in the days to come. Life does NOT revolve around me, I would NEVER want that...Then off you go, feeling very alone on your breast cancer journey......But when I least expect it, there are messages of hope and prayers from people that I don't know as well, they tell me, hey, you are NOT alone in this journey.  You are strong, you will make it through....and that bolsters my spirits.     Thank you....

Love, Jeannie