I don't know how to add these as separate entries under one tab, so this will just be in an on-going-journal format. Maybe a small child can help me solve this, but for now, here it is:
OCTOBER 17, 2014
I have decided to add this page to my Blog about my Breast Cancer journey. I want it to be separate from my business, but I also wanted to be able to journal my thoughts about this for others, my family in particular, and for myself--so I don't forget where I've been and how I got there!
By keeping this on a separate page, I won't be boring or bothering people who come to my blog just for quiltiness. But if you want to read about this fight, you can check over here.
My doctors have determined that my cancer is Triple Negative. Meaning that it does not have receptors for estrogen, progesterone, or HER2. That gives us less options for treatments, and there is not quite as much research on this type. It is an aggressive cancer, and because of that, chemotherapy is usually very effective. So I am ready to fight.
We have decided to do surgery first. Sometimes TNBC patients are treated with chemo first. My medical team has reviewed my case and decided that surgery first will be the plan. I trust them. I have read quite a bit about this, but in the end, (unless I pause to go to medical school) I really have to trust those that know much more than me, and make an informed decision.
So next Friday, the 24th.
Bi-lateral mastectomy with lymph nodes.
I can hardly wait.
OCTOBER 22, 2014
UPDATE: My surgeon called me yesterday. She said that she has been thinking about me all week. She wanted to go over some more data with me. She shared a new study with TNBC and the prognosis when waiting to chemo vs. doing chemo first. We went over all the pros and cons.
It can be confusing-- because there are valid reasons for both approaches, and no standard protocol has been set. So then I asked her, "What would you do if you were me?"
Without hesitating, she said, "Chemo first." So, there's my answer. I trust her. And she has more knowledge than me. So we have cancelled the surgery on Friday, and instead, I see the oncologist tomorrow.
Some time I will have to tell you why I trust her so much. But that is another story.
OCTOBER 25, 2014
Getting all ready for chemo is a task in itself! At least it has been for me. I have no less than 6 more tests and procedures before we can begin. Early tomorrow I go in to have a port inserted. It's a small surgery--just 90 minutes, and I will be home by noon. At least I feel like we are finally doing something! The waiting is hard for me. From one test to another. And one appointment to the next. But the more information they have before we start, the better. We do need to know who the enemy is, after all.
OCTOBER 30, 2014
Enemies. Plural. My wonderful oncologist just called me. (I just love her!) The recent imaging tests show that I have 5 tumors. Bummer. But that doesn't really change things much. Because we already thought I had 2 tumors. It just sounds scarier. But the treatment will be the same, and now I can add Multicentric to the descriptive cancer terms of Triple Negative and Grade 3 Invasive. So it is an aggressive (duh) cancer, and is probably in my lymph nodes. They have ordered new biopsies of the nodes on Monday. This is important in determining a treatment strategy. Since I am doing neoadjuvant chemo (before surgery) there will be no way to pathologically discover if the nodes are affected for six more months, and we need to know before that.
But here is the really good thing: No other "hot spots" beyond the breast tissue! Yay! I was worried about that one!!
Meanwhile, I am busy with some sewing and a tax audit. How's that for distraction? Could one ever be grateful for an IRS audit? Maybe so.
So off I go to one more test….
NOVEMBER 3, 2014
They did the lymph biopsies today. One more thing done. Tomorrow I have a pre-chemo ECHO on my heart to give them a baseline for my heart function. Some of the chemo drugs can cause heart damage, and they need to know what heart function I had at the beginning of all this.
My port site has been healing, but with the new biopsies and all the black and blue from the surgery, I do look pretty rough. Jordan is a bit concerned and brings me a heating pad often. When I tell him I have to go to the doctor, he always anxiously agrees. "YES!" I can almost hear him say, "Go to the doctor, you have an ouchie!!" He is so sweet, and kisses my shoulder when he doesn't know what else to do.
My family has been so sweet and supportive! They just jump if I need anything--and I'm not even sick yet. At least I don't feel sick. My sweet kids have taken time off of school or work to come tend JoJo when I had all these appointments. Today my dear DIL Katie came and watched him for 6 hours. She'll be back tomorrow for more of the same. Last week I even had to call upon friends to sit with JoJo, and he is getting more used to the idea of me being gone. Usually he goes everywhere with me. I'm not saying he always likes it, but he comes along and is quite patient if there is a donut involved at some point. He is a sweetie! How blessed we are to have him!
I haven't started getting ready for the tax audit yet. This is one thing I am really good at--procrastination!
NOVEMBER 10, 2014
Well I got the lymph tests back and they were positive for cancer. I was not surprised. So last week I finally started the chemo treatments. AC for 8 weeks to start with. Then on to another chemo drug for 12 ish more weeks. It is beginning to dawn on me how long that is. I am blessed to not be too sick yet. I definitely feel it, but I can work around it. I think the steroids may be keeping things at bay for now, so I expect to feel worse as they wear off. I still have my hair. Although I almost would like to get it over with. It took me an hour this morning to fix it. (I must need a lighter-weight blow dryer--mine feels soooo heavy!)
NOVEMBER 17, 2014
I was surprised when I just looked at my calendar to see a cancelled event. Today I was supposed to be filming with quilting greats Alex Anderson and Ricky Tims. That doesn't even seem real. So much has changed since that was planned. I'll have to do that later.
The treatment is going well. I am looking for joy everyday in all that happens to me. I find joy in the fact that I feel terrible because that means the medicine is doing its thing. It is just my reminder that this is being worked on! I was able to go to church on Sunday, and the music and messages were so joyful to me. I get beautiful insights from so many wise and kind friends, and that brings me joy.
My wonderful family is my best joy. I am unbelievably blessed to have such a support system. I know there are some out there who suffer alone or feel alone, and my heart goes out to them. If you are going this alone, please remember that no matter what, you matter!
NOVEMBER 24, 2014
I am on my second round of chemo. It has been better than expected. I am tired, and have some side effects, but they are manageable. Mostly because I don't have any big expectations, so it is OK if I don't get anything done. I have been watching a lot of movies and doing a bit of hand stitching. Hard to concentrate on anything. We shaved my head yesterday and had quite the party! Jordan is a little concerned and keeps kissing me on the arm. He doesn't know what to think.
DECEMBER 1, 2014
I had a wonderful Thanksgiving. The whole family was here and we had a blast. Everyone did all the cooking, and I just set the table. Good plan!!
The Chemo has been going well. I have had two rounds of "Dose Dense" AC, (Adriamycin and Cytoxin). They call this combo the Red Devil or Red Death. I guess because of the side effects or because of the toxicity.
This is how it goes when I go in for an infusion. First they access the port in my chest by putting a sterile line in right through the skin. I don't feel this because I put a topical anesthetic on the area an hour before I go in. Then they take a blood sample and send it off to the lab.
Meanwhile, I visit with my oncologist. She gets the lab results back and they check to see that my blood counts are high enough to have another treatment. (So far, so good.) Then I go down to the infusion center and get set up in my lounge chair. Quite comfortable! Of course I take my stitching with me, so I have something to do. Sometimes I just sleep. They set up a drip and administer 3 drugs before we begin the chemo. These are steroids and anti-nausea drugs to help with the side effects. I have been blessed that they really do help.
After those are all done, the nurse gets all dressed up in sterile gowns and gloved up to cover any exposed skin. The Adriamycin comes in four LARGE syringes. They don't drip this one. It is hand pushed into my port with a check every 2cc to make sure it is still in the vein. That is required because it is so toxic that it can cause extreme burns if it leaks onto the skin or out of the vein. It takes a while because my port cannula is very "positional" and they have a hard time getting any blood to come back. So the checks take forever and I end up practically doing jumping jacks to get it into the right place! The nurse said they have a "problem patient" about once a week. I guess I am it this week. She is always so glad to see me!! Ha Ha Ha!
After the Red Devil, they drip the Cytoxin. That takes an hour or so. Then I am done and ready to go home. Last time I felt good enough to drive home myself. I even stopped at the DMV, so that's saying something! But I have heard that it is cumulative, so I am expecting to feel a little worse each dose.
The first week after infusion is the worst. The first few days I am helped by the steroids, but I can't sleep. And I do feel tired and no appetite. When the anti-nausea drugs wear off, I notice it, but I am getting good at controlling it if I keep on top of it. Then every day of the next week I feel a little better,
until it is time to go again.
The day after a AC treatment I have to go back to the hospital to get a Neulasta (sp?) shot. It is to stimulate my bone marrow into producing white blood cells so my counts don't get too low. The shot itself is no big deal. Just like a regular shot. But with a bigger price tag. $6000 for one dose. Wow. That is why we drive 50 minutes to the hospital just to get a shot. Then my insurance will cover it. The side effects of the Neulasta can be painful because your bones are super hyped up making blood cells and the increased activity and volume leads to painful bones. But I have not really noticed this too much. Once in a while I get pain in my bones, but mostly just dull achy, everyday kind of stuff. I think I must have a high pain tolerance or low memory--not knowing or remembering that I normally really feel much better. I know I feel much better than lots of people I have talked to or read about. I
am truly blessed!
DECEMBER 8, 2014
I had my third treatment of ddAC last Friday. This is getting a bit harder. Must be cumulative. But I am still doing OK. I have had a bit more fatigue and stomach issues, but mostly I am noticing that I feel like I am in a fog. Like my vision seems to be worse, but then it isn't. Like when you are sick and don't feel like you are normal. Duh. I guess I am sick and not normal. Oh well, I never was normal before!! I wouldn't want to start now!
My oncologist and I went over the plan and calendar for my treatment. I am handling the chemo well so we don't see any delays coming. That way we can make plans for the next chemo and surgery. That is a relief to me, because I can sort of plan out my year, and make business decisions, too. I am looking forward to it!
I am liking wearing my scarfs on my head.
I don't like the wig so much. My good friend, Janet, said she would come trim the wig to help improve it, but for now I am scarfing. I still have quite a bit of tiny hair on my head. It is amazing-- considering how much I loose each day! I must have had a LOT of hairs. I am basically bald on the back and the very front, but still have some die-hards right on top.
Now if I could just get out of this fog. Maybe if it would snow that would help!
FEBRUARY 10, 2015
I have had 6 treatments of Taxol. Six more to go. I am feeling pretty good! Either I am used to it, or this is having very little effect on me, at least that I notice. I have a little bit of neuropathy in my feet and I'm losing toenails. I get tired, but I just take a nap. It's nice to have a good excuse to take a rest! I am working every day on my quilts and new designs. That is the advantage of working from home--I can do it whenever I feel like it! It won't be long now to get this chemo over with!
SEPTEMBER 26, 2015
I guess it is time for me to update! For the longest time I couldn't access this page because my blog thought I was a guest blogger for some reason. Today I finally fixed it. A lot has happened since chemo. I finished that at the end of March and had surgery in April. Double mastectomy, with a some lymph nodes. The recovery was longer than I expected. I still had drains in when I went to Market in May. (That may have been a bit soon to travel, but it all worked out.) Then I had radiation treatments through the summer. That was a long haul. 6 weeks of daily treatment. It is really uneventful, but wears on you because it is EVERY day. I was tired and weak by the end of July when I finished.
Now I have been busy with a recovery exercise program. I am officially cancer-free! So now I have to work at getting back to where I was before with my strength and stamina. I have one more surgery scheduled for November for reconstruction. My doctors follow me very closely--I see them every couple of months. I am so grateful for them and for all of the wonderful family and friends who have been praying for me throughout this past year. It is humbling.
Love to you all--wishing you the best of health!