Deja Vu

I was pretty sure Punxatawny Phil had come and gone this year, but it seems that I was wrong! I had chemo treatment number eight a few days ago and the exact same side effects popped up like a bad penny. So precise that I ended up with the same mouth sore on my tongue in the very same spot!

According to the American Cancer Society, Paclitaxel (Taxol) is an extremely potent chemotherapy drug, often producing a number of side effects in patients. Side effects include severe allergic reactions, cardiovascular problems, infections developing from white blood cell deficiencies, complete hair loss, joint and muscle pain, irritation at the injection site, low red blood cell count, mouth or lip sores, numbness or burning in the hands and feet (peripheral neuropathy), and stomach upset.

While medications designed to prevent or treat nausea, vomiting and decreased white blood cell counts are available, there are currently no treatments for other serious taxane-induced side effects, particularly nerve damage.

That makes me a little nervous. The peripheral neuropathy in my hands and feet is back in full force. It never went away between treatments, but seemed to improve. I hope that any nerve damage rights itself in time when all my treatments are done. I hope it is not permanent!

Right now, I am battling the muscle and joint pains with prescription pain medication. It literally hurts from head to toe! When I woke up this morning, the muscles near my ears even hurt. I have shooting pains my back and stomach muscles as well as my down my legs and into my ankles. The pills help as long as I stay on top of it and don't let them wear off (which I usually do)!

I'm looking forward to feeling better in a few days and enjoying that normal time again before I hit the "repeat" button two more times.

That Normal Time

I am enjoying that time period that hangs between chemo treatments where I feel normal. I have recovered from the side effects and a retch-inducing stomach virus I picked up when my counts were low. The downside to this period of time is that it means the next treatment is just around the bend. Usually time flies, but this whole process feels like it is dragging its feet like a grade schooler on his way to the principal's office.

My most recent chemo was my first of the drug Taxol. I felt different than I had before. I was told that this drug comes with side effects that include muscle and joint pain. My oncologist told me to take something for this and call if over-the-counter drugs were not "cutting the mustard." So, a few days after chemo, I called! My whole body hurt, especially my back and ankles. Pain pills helped and it slowly went away after about a week.

The peripheral neuropathy hung around. That is numbness and tingling in the hands and feet. I still have that and am not sure if it has improved somewhat or I'm just getting used to it! I bought some new tennis shoes recently, but have no idea if they are comfortable!

"Baby Chick Fuzz"

My hairdo, which is super easy to care for since it actually consists of no hair, has changed just a wee bit. Kaylee (my 10-year-old daughter) calls it my "baby chick fuzz." It looks like I've grown in a titch of hair between treatments. It's soft, light and barely there! It delights Kaylee, for whatever reason, who likes to rub the "baby chick fuzz." Unfortunately, I noticed when I rubbed my head recently some fuzz fell out. Bummer. At least I'm entertaining my child!

Despite being a lot smoother, there are other things caused by chemo that I have been able to avoid so far. I was given a laundry list of possible side effects and worried about which ones might manifest in me. I have not had mouth sores (a big one on my worry list), fingernail changes or a metallic taste in my mouth.

I have had shingles, a bladder infection, tummy issues (to put it delicately), loads of bad heartburn, queasiness, major lack of energy, body aches (flu-like aches and pains), fatigue, headaches, hair loss and strep throat (you don't appreciate your immune system until it doesn't work as well as it did)!

The best one is "Chemo Brain." It doesn't matter if you actually have this cognitive impairment/fuzzy thinking/forgetfulness that can be caused by chemo. It's a great excuse for everything! Oh, was I supposed to clean the cat's litter box? So sorry, must have been chemo brain! Did the baby have a dirty diaper when I handed him to my husband? Yes, he did! Sorry I didn't notice, must have been chemo brain! Thanks for changing him anyway! See, there should be some perks! 

"Unexpected Weekend Trip"

So, that wasn't exactly the weekend that I had planned. Let me back up. After my chemo on Wednesday, I went home to rest until I noticed that my port was hurting and even more uncomfortable when trying to go to sleep. So, I went into the clinic on Friday morning. After a chest X-ray, a dye test (which was painful) and a CT scan, I was told to go to the hospital. My port had a crack/a leak and had to come out. This was not welcome news, especially since I'm not done using it yet!

The surgery team came to my hospital room and told me it would be a "no big deal" 15 minute procedure to take the port out. I, personally, do not like the idea of being wide awake and nothing but numbed while someone is cutting on me! I could tell they were having problems. A nurse then came in to hold my hand while they worked. They went through a whole bottle of lidocaine because I kept feeling it! About 45 minutes after they started the "easy 15 minute procedure" it was done and the doctor declared it the hardest one he has ever taken out. Great. They stitched me up, gave me pain pills and put me on an IV med. I was hoping to come home then.

Instead, I had to miss Kaylee's first ever basketball game on Saturday afternoon because they made me stay two nights! Due to the possibility of chemo leakage, I had to be given three rounds of some antidote medication about 24 hours apart. I got the last one just before Sunday evening and was then allowed to go home! I'm sore and tired (no such thing as sleep in a hospital). Now, I have to see a doctor to figure out what we do about the rest of the chemo treatments. I won't be getting another port, that much I have decided.

"Last Dance"

Sorry, my dance card is full! There is no more room for dancing with the Red Devil! I know we may have done a waltz, a jig or even a line dance (I know we did not tango)! However, despite hooking up with the Red Devil six times, literally (via IV that is), there will be no more trips to the ballroom with this nasty guy!

That is something to for which to be thankful! Yesterday, I had my sixth chemo treatment which consists of adriamycin (a.k.a. "The Red Devil") and Cytoxan. I'm finally done with something! I have four more chemo treatments to go. Instead of the previous cocktail, my next treatments will be a chemotherapy drug called Taxol. I have no idea how this one will make me feel, but I'm hoping not as bad as the previous drug combo!

The A/C combo knocked me down pretty hard after our last meeting, Honestly, not a really nice thing to do to your dance partner! I didn't really want to go back yesterday for the final installment, but a commitment is a commitment after all. Sigh.

"Pink Out!"

I'm not terribly shy. I know, I can hear those of you who know me laughing right about now. However, I'm not going to win an award for "most outgoing" either. So, it was a surprise to me when I found myself on stage in front of a crowd of people last week! Of course, I couldn't really see them with all the lights in my eyes!

I got to attend the Mizzou gymnastics "Pink Out" meet which raises money for Ellis Fischel Cancer Center (a place I'm intimately familiar with now). They needed some token breast cancer survivors to honor on stage before the meet started and since I am a big fan of free stuff, I went! Seven of us walked on stage and waved (we tossed around the idea of dancing Gangnam Style, but we chickened out)! Then we each got a free t-shirt and a pink carnation (which my daughter promptly stole from me)!

The gymnastics meet was a lot of fun and we enjoyed the night out! We will do it again sometime as regular, paying guests!

"Long time, no talk!"

It has been a while since I have written. I have a good excuse! I didn't want to be negative, I didn't feel good and I was out of town for a while enjoying family for Christmas! I guess that is more than one excuse.

Christmas was wonderful. We got to spend a week in Tulsa with our families. The only not wonderful part was that I got shingles. I do not mean the roof kind either! The nerve pain has calmed down and I thought I was in the clear, but now an intense itching has started in on my left side. Will this ever be done? Go away already!

I had chemo number five the week after Christmas. That puts me at the halfway mark for chemo. I guess that is good, but I am having a hard time seeing the glass half full. I guess this treatment was my "freak out" chemo. It knocked me down so hard that I don't think I can do it again! As if anyone is asking if I want too or not! I felt better about not being so strong about it after talking to someone I met when I was first diagnosed. She and I are about the same age and going through this about the same time. She said she "freaked out" after the third a/c chemo treatment. I waited until my fifth to have a melt down, so I guess I'm not alone! I have one more a/c treatment (dreading it!) and then I switch to taxol. I am really hoping that taxol is somehow an easier drug! A person can always hope!

"No Hair? Don't Care!"

I have always been afraid to cut my hair shorter than shoulder length (because I like pony tails) and often grow it long. So, I was worried about the hair loss. Turns out...I don't care after all! I really thought being bald would bother me, but it doesn't. Not even a little.

I usually opt for hats in public. At home, I wear them if my head is cold. If not, I dare to go bare! I have a wig that I haven't worn yet. I did get it out and try it on recently. It felt weird! It is now brushed and sitting atop the Styrofoam head on my dresser. As a fun art project, Kaylee decorated the plain white head for me. I'm not sure my blush looks exactly like that and I certainly don't have long eyelashes anymore, but she did give me my blue eyes!

 

In the scheme of things, having no hair doesn't feel like a big deal. Having surgery, chemo and later radiation feels like a bigger deal. Even that stuff isn't as hard to get through as I thought it would be. There is no choice in the matter, you just put one foot in front of the other and keep moving forward. It is what it is. At times, it is even a blessing. I've met some wonderful people and had a lot of great care. I have seen friends and family members rally around me and I am much more mindful of all the precious little moments in life. I don't sweat as many small things. I hope these are the lessons that stay with me once my hair grows back.





 





"Blunders and Blessings"

It was not exactly smooth sailing, but Wednesday was round four of chemo. I was supposed to start the day at 8:30 and expected to be home between 1:00 and 2:00. No such luck. The cancer center is undergoing the learning curve of a new computer system (problem number one). Problem number two was my picky port! One of the chemo meds ("the red devil") just didn't want to go in no matter what they did. I was finally moved to a room with a bed so I could be completely flat, turn my head this way, hold my arm that way....until we finally got it. Then I still had my second chemo med (thank goodness this one is on a pump).

It was getting to be 3:30 at this point, so Kent had to leave and relieve the babysitter. When Kaylee got home from school at 4:00, he came back with the kids in tow. I was close to being done when they got there. It was 5:00 before we finally got home!

However, the blessings of the day were bright! A silent auction fundraiser was taking place downstairs and I had bid on two items. The bidding was to end at 1:00. Kent went downstairs at the end to pay for the items that I won (both of them)! However, my three nurses from the Breast Health Center were also there paying for their items. They figured out who he was and told him to forget it! They had noticed my name on the sheets and had decided they were going to pay for my winning bids, plus bought me yet another item! They gave it all to him with hugs and said "tell her to have a Merry Christmas!" Nothing like that has ever happened to me! They are so wonderful there!

A second blessing: the friend who babysit Jayce all day came back when we finally got home with a freshly made dinner for us! Another friend from church came by last night with a home cooked meal as well. I'm so grateful! It's nice to feel good while you are feeling bad!

"Let's Play...Pass the Infection!"

It's not really a fun game, but it seems to be what we having been playing in our house lately. Just before Thanksgiving, Jayce got sick. We took him to the doctor and found out he had pneumonia. It was sad to see him so listless and sick. His fever went up to 105 before he started to feel better.

We did manage to make it down to Tulsa for Thanksgiving weekend. It was nice to see everyone, but really exhausting too. I started feeling bad on Saturday morning. A sore throat was kicking in and for about four nights in a row, I didn't get good sleep because it kept waking me. I went to the clinic Monday morning for tests galore. When you are on chemo and your immune system is compromised, they take every little thing seriously. Which means I got a chest X-ray, flu test, strep test, several blood tests, IV fluids. The result: strep throat and an ear infection.

Now that my throat is better and I nestled in for a good night's sleep...I was awakened at 12:30 in the morning by a crying 10-year-old who said her ear hurt. We took care of her and she woke again at 6:00 a.m. Kent took Kaylee to the doctor this morning...ear infection.

I guess we are doing our part to keep the antibiotics companies in business. I'm looking forward to another round of chemo next week (I use the phrase "looking forward" very loosely)! It will be back to feeling sick for me. So, let's hope we can keep everyone else well!