Here Comes Chemo #3

Things were uneventful after the second chemo except for I hit a roadblock over the weekend, just before my third chemo appointment. Severe fatigue hit me so suddenly, it was alarming. I felt too weak to walk or stand up. I went to bed Saturday night at 6:00 PM, slept till 10:00 PM, got up briefly, went back to bed and slept till 3:00 AM, woke up for a bit, then fell back to sleep at 5:00. That day I felt a little bit better, but the fatigue lasted through the next two days. I've also had a sore throat for two straight weeks. It's not getting any worse, but it's not getting any better. No fever. I'm worried about my white cell count, it could be super low. I have not had this level of fatigue this late in the chemo cycle until this weekend, I was feeling very well. I will find out at my next appointment which is in two days. I'm hoping that it is just my body trying to catch up on sleep, as I have only been able to sleep intermittently each night for about two hours at a time, then I wake up, fall back to sleep, wake up over and over and have no idea what's causing the problems with sleeping. This has been going on for over two weeks since the second chemo.

I have also been wondering about my lymph node involvement. Because the cancer has spread into the chest wall tissues, I am not a candidate for any kind of surgery. No mastectomy, no lumpectomy, etc. But I did want to know why the oncologist hasn't said anything about the lymph nodes. All I knew from my biopsy was that there was a smaller, second tumor in the lymph nodes and it was also malignant. I knew there was some kind of involvement before I ever had the biopsy because shortly after Thanksgiving, I had a couple of days where I could not move my arm over my head. I was not able to stretch my arm out without pain and extreme stiffness. I thought, what the heck did I do to my arm?! 

So how do I know if it has spread any further in the arm lymph nodes, or if there are more nodes involved? The PET scan and MRI only showed one definite malignancy in the axcillary (armpit) lymph nodes so far. So I will ask my oncologist at the third infusion appointment. This time I had a list of other questions to ask as well. When you get diagnosed, you tend to go numb in the brain, at least I did, due to shock. A lot of things I just accepted as far as my treatment plan, because I wanted to get some sort of action started to knock the tumors down. I was grateful that several people were going to be in charge of me, because I was really in a bewildered state at the time. I didn't really ask a lot of questions as first, because I didn't really know what to ask and the reality of having cancer for the rest of my life hadn't set in (my type of cancer is not curable). I'm considered to be in "palliative care". They are trying to keep the cancer at bay and not have it grow any further. 

Now, the wheels are turning. I am going to ask...I'm thinking about my type of treatment plan--is it common? (Yes) Is it tailor made for my situation? (It is the "gold standard" for my particular cancer which is aggressive, invasive lobular cancer.) How long do the chemicals stay in your body when going through chemo treatments? (Two to four days roughly....drinking lots of water is recommended to help flush the chemicals to exit your body more quickly.) Are there clinical trials available to me or should I just stay the course and see how things go? (Forgot to ask that!) Are there other options besides a radioactive PET scan every 3 months? (Not for the first 6 months. I need two PET scans three months apart. After that, the doctor might be willing to cut back to once every three months, depending on what the scans show. He is really firm on that.) A PET scan shows where the cancer cells are and is the most definitive way to find out if the cancer is being contained or if it has spread FOR THAT MOMENT IN TIME. I found out they are not going to explore the lymph nodes because the cancer has gone beyond the lymph nodes on my left side, well into the chest muscles and is widely spread throughout the chest wall on that side. I also have osteopenia--the precursor to osteoporosis. Do I need a bone scan to determine base line level since immunotherapy drugs tend to accelerate bone loss and fractures? Great. (I'm going to insist on that test anyway!)

Day of chemo #3--bloodwork first...I anxiously awaited the results to know what might have caused my severe fatigue over the weekend. it turns out my body was just needing to catch up on my rest. Blood work was well within limits on everything. There were some snafus. Part of my bloodwork came back promptly, the rest of it got bogged down because of some machine having broken down. I was at the infusion center from 9:30 until 3:15 this time. Brought some hand sewing projects to work on...Finished my February little mini quilt for my stand, and started a knitted dishcloth.

Here comes the fatigue...I worked Wednesday and Thursday at school, and felt fine...those steroids really keep you going for awhile! Just for three days...then the body is like, WHOA! Slow down! And while we're at it, let's see how the bathroom situation goes. Kind of like coming off of anesthesia, your body has to wake up. So time to rest and chill through the weekend. Fatigue continued through Monday and Tuesday, darn it! The nosebleeds are back along with trouble breathing at night. I have a deviated septum and was going to get that fixed last fall, but cancer came instead. I'm sure that's why I'm not breathing very well at night. I keep getting clots of blood and tissues that block my breathing. A nasal rinse squeeze bottle with Xylitol packets really really helps with that.

On another note--I've changed toothpaste to see if that helps with the mouth sores. Supposedly laurel sulfate is an ingredient that aggravates mouth sores/cancer cores and it's in most of the popular big name brands of toothpaste. I'm trying Sensodyne instead. So far, knock on wood, I have only gotten one small mouth sore. You are also supposed to try using saltwater/baking soda mix 4 times a day, and I haven't been good about that.

The list of meds is growing...Here's what my chemo regimen and extra meds looks like:

1.Claritin every day for 10 days-- You start taking it the day before chemo, then continue through the next 9 days. Some people get very severe bone pain from the Neulasta shot, which stimulates bone cell growth. I have not had any problems from that shot in three different administrations. I am very lucky. People who experience side effects from the Neulasta say it's debilitating pain. The Neulasta is the on-the-body injector that automatically goes off in the next evening, the day after an infusion. It continues to stimulate white cell counts for a couple of weeks. I find that fascinating that it's timed and fascinating how it works, with its little green light blinking off and on, I feel like a firefly! When it gets close to injection time, the green light blinks faster and faster and then a quick, sharp poke, the needle administers the meds automatically. It takes about a half hour for the meds to siphon through a teeny tiny catheter tube into your body. After the chamber is emptied, I take it off.

2. Tylenol--every day for ten days, twice a day....to also stave off bone and muscle pain

3. Companzine and Zofran--two nausea medications. I rotate back and forth between them, one pill every three hours, and am to stay the course for about a week or longer if I need to.

4. Olanzapine--another nausea medication I take only at night. I will take this only for the first week after each treatment, as the nausea subsides usually during the second week.

5. An assortment of pain killers, hydrocodone + acetaminophen combined into one pill and gabapentin which they thought I might need, but I haven't had any pain to speak of since I got diagnosed. I just put them in the closet and am leaving them alone for now.

Monday morning I called the doctor's office to report my significant exhaustion (it didn't get any better over the weekend) to see if they wanted me to come in for some fluids. They said just to keep an eye on things, and watch the color of my urine. If dark yellow, that's not good, it's a sign of dehydration, but in the meantime, keep pushing liquids. I'm in the middle I'd say...Honestly, I never had any idea of what true physical exhaustion and fatigue was like until now...It's so debilitating, you feel like you can't even put one foot in front of the other to walk a short distance. I hate it!

The other side effect from the chemo is my skin is reacting as if I've been radiated. I have "broken out" in all kinds of ugly red open sores, small, about as big as a pencil eraser all over my chest, on my arms and fewer on my legs. My hands again are affected, looking like I've stuck them in boiling hot water once again. This chemo is really assaulting my skin. After second chemo it wasn't too bad, after this third treatment it's much much worse. The medical team wants me to have a dermatologist look at them. I look like I have measles all across my chest, and the back of my shoulder blades look like I have leprosy...the spots are all blackish brown and very close together, like a bazillion freckles all of sudden broke out. Sigh.....Trying to get in to see a dermatologist is really difficult here in northwest IN, it's months out before you can get an appointment. I'm going to keep trying to get in sooner....

Everyone always says don't google stuff when it comes to cancer and treatment. I made the mistake of googling something and up popped, "does chemo age your body?" Oh, yes..."TEN TO TWENTY YEARS". Sigh....I already feel the effects of this darn treatment....I sure hope it's working. Won't be long before I know for sure...PET scan is scheduled for March 27th. The good thing is, I'm already old, so how much worse could I feel, really. Haha, I'm not going to answer that. I will just attribute all aches and pains and whatever comes my way in the future to being the ripe old age of 75.

The blessing in all of this, is I have still been able to work at school. I worked a total of six days after this third treatment. I pick jobs where I can serve as a reading intervention or special ed teacher, usually small group instruction and a lot less stress than running a whole class all day long. It has worked well for me...I have a couple of schools that I prefer and they have had openings every week. I'm going to bed before 8:00 each evening that I work, but that's ok! Insomnia is comma while undergoing chemo,  so sleep is still a problem, but hope it gets better. I just take more naps now than I ever did, which is never, previously. That's right, Sparky NEVER took naps before!

I'm heading into my third week after chemo, and that's usually been my best week. I will carefully take a few teaching jobs, and wrap up some more craft projects, like this monthly wool appliqué series. I think it's really cute! I really love small sewing projects and hand embroidery. This is a series of 12 woolies, primitive style, and they get displayed on this 8" black plate (on the left). I will swap one out each month after sewing and appliquéing each monthly design. That funky little metal primitive sculpture? That was something my mom had. It bounces a little when you touch it. It always reminds me of my mom's joyful spirit. She loved music and she loved to dance well into her 90's. I'm the same way....I hope to be able to dance for a long time.....