Summer Camp For Grown Ups!

Today, I am missing about 50 ladies and one man. I recently returned from Camp Mak-A-Dream's Women's Cancer Retreat in Gold Creek, Montana. I don't have room for all the adjectives needed to describe the experience, the setting, and the women!



Montana sunrise!

Oh, about that man, I miss him at least three times day. He's the chief cook and bottle washer at the camp, and he is good at his job! It was an indulgent experience to simply show up at the main lodge and have a steaming breakfast, lunch, and dinner awaiting with the bonus of no dishes to wash!

Camp Mak-A-Dream Main Lodge

 



I met a young lady whose friend discouraged her from attending by asking why she would want spend time sitting around with a bunch of depressed women talking about cancer. The camp experience was in actuality bursting from the other end of the spectrum! A diverse group of women - from twenty-somethings to that age range where it is impolite to ask for a number - came together and didn't do much sitting around!

 

Unless we were sitting around in this hot tub!







Some women had conquered cancer years ago, others were fresh from the fight, and a few were still in the throes of the battle. However, this group was so overflowing with life and laughter that one would never guess. They were open to everyone emotionally and willing to take on just about anything physically. Wheelchairs and canes were cast aside as women old enough to be my grandmother joined everyone else in the big tree house to sail down the zip line! There were hikes, a climbing wall, and an art studio to keep us busy. There were educational sessions on everything from healing after cancer to gentle yoga. Above all, there was a spirit of connection with a lovely group of ladies and breathtaking scenery punctuated by the distant bugling of elk.

Montana sunset!

You. Are. Cured.

After my year of pitching a tent at the cancer center, I went in for a follow-up and the doctor declared "you are cured!" Then I woke up from my dream and realized that never happened. I know, it should! I wish it would! But, it hasn't.

Instead, I'm floating in this weird limbo where the major things feel done, but appointments still dot my calendar. I have follow-ups and follow-ups to the follow-ups. Medications still have to be refilled. I have pains here and there. Hair growth is slow. Too much to declare myself bald and not enough to feel comfortable going out without a hat.

My medical oncologist sent me to X-ray for some ongoing pain in my ankle. The result was to move me on to an MRI. The nurse called the other day and said "well, it is not cancer but you do have some orthopaedic issues." Now, I'm being referred to an orthopaedic specialist for these unknown "issues." Wait, back the truck up! What did she mean by saying "it's not cancer!" I never thought it was! Was that a possibility? I am not going to go through life worrying that every little pain is cancer. But, sometimes there is a little evil minion in the far recesses of my brain that wants to place that thought in my head. I usually squash him. But, sometimes I wonder. If my body could "make" cancer cells once, what keeps it from doing it again? BOOM! Sorry, I had to take a rubber mallet to that evil minion. It made a bit of a mess, but I think it will all work out.

"Radiation Break Up"

I had to end a relationship today. That's right, I broke up with the radiation techs. I told them that while our relationship had been short, it was intense and brought me nothing but pain. I softened the break up for them with loads of candy!

After 30 daily (minus weekends) treatments, I have graduated from my radiation therapy! I faired well. My skin held up and I only have one sore spot under my arm. Granted, that spot is a wee bit painful...but overall, I think I did pretty good. I have to thank my Mom for doing a major splurge for me. For someone uber-practical, the purchase of a nearly $400 bottle of "La Mer" concentrate was a stretch! She heard from others who had used it during radiation to treat the skin that it was practically miraculous. I used it daily before bed during treatment. When examined, my nurses and my radiation oncologist declared that my skin did "phenomenal." So, there you go. I'm only bringing this up in case this could help anyone else and to thank my Mom.

While I'm thanking people...look at these great flowers from my husband and kids!

 

 

It's great to be done!!! After almost exactly a year of all this, It didn't seem like this day would ever get here. I didn't think it would, but to be honest it hit me emotionally. After my last treatment and on my way to the exam room to see the doctor I got a little teary. My nurse was great, after a hug she handed me a congratulations card from the radiation oncology team and soldiered on through the information I would need next. It felt good to leave the cancer center with the book she gave me..."Life After Cancer Treatment."

 









Halfway!

Today, I hit the midpoint of my radiation treatments! That's 15 down and 15 to go. We're making some progress! When the radiation oncologist examined me, he said things were looking good. In fact, better than average! That's good because I'm trying really hard to prevent some of the awful skin problems that can occur. Right now, I look like I have a very slight sunburn. I don't think there is much that can be done to prevent some radiation burn. I just want to avoid the blisters, peeling and other yucky things. So, I am hopeful for the best!

To celebrate "Happy Halfway Day!" I brought a big basket of chocolate to the appointment with me. It seems that people don't normally do that and so...I'm one popular patient! Now I bet they'll be expecting something even more spectacular for the the last day. I'll have to think on that one.

"Squishing and Burning"

Okay, the burning hasn't started yet. Let's not get ahead of ourselves. The squishing, however, has been completed and with good results! I went in for a mammogram and all is well! That, obviously, is MUCH better news than the news resulting from my first mammogram.

The burning is about to commence. I met with my radiation oncologist the day after the mammogram. I was taught all about what is to come. My 30 rounds of radiation therapy starts Wednesday. The most interesting part is my radiation oncologist himself. First, I'm thrilled to see him (since seeing him means I've completed chemo)! Second, he's funny.

When it was time for me to "get into a gown" during my exam. The nurse stayed in the room with me and he stood in front of the door and pulled the privacy curtain in front of him saying "pay no attention to the man behind the curtain." He did it in his best spooky, crazy wizard voice. He then told me everything he needed to know to be a radiation oncologist he learned in third grade - how to write on yourself (or in this case someone else). After taking a black marker to my skin, and drawing lines and dots, I got to keep the marker! Perk! Actually, they just aren't allowed to use it on anyone else. Sterile marker! I will keep it in case I want autographs from everyone when this is all done! You never know.

Chemo Is Over!

It's over! The chemo part that is. I went in for the tenth and final treatment two days ago! It was the first time I've looked forward to spending my entire day at the cancer center. I felt like this day was never going to get here!

I'm hoping to be fighting the side effects for the last time! I'm anxious for the muscle and joint pain to fade away. The numbness and tingling in my hands and feet have got to go too!

My cancer center just moved into a brand new wing of the hospital. It's modern, bright and beautifully appointed. But, it is still a cancer center. So, as nice as the new Ambulatory Infusion Unit looks now with it's new recliners (complete with heat and massage) and your very own TV on a swivel arm...I have no desire to see it again! The nurses in there (all wonderful) told me I could at least drop by and say 'hi.' I thought about it for half a second and told them 'no, I don't think so!'

"Congratulations! You did it! Love, Mom and Dad"

(Thank you!!!!)



Of course, I'll be back to the cancer center many times. I have a follow-up appointment with my medical oncologist in about three weeks. I have a mammogram and an appointment with my surgeon next week. I also have six weeks of radiation treatments on the horizon. But, until then I will celebrate having survived the monster that is chemo!

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!