...And Chemo....

Hi, I bet you are all wondering how I am going to find the humor in chemo...well...On Wednesday I started taking Decadron (one in the am with breakfast and one with dinner). There are alot of support meds to help the side effects - cardiac, GI, white counts,etc. I have to say that I didn't get much sleep Wednesday night. But by Thursday morning I just wanted to get the show on the road and the first treatment behind me. I've sat and talked with many, many people while they were going through chemo but that didn't help me in knowing what my personal experience would be like (and there are too many variables...no two treatments are the same)

We arrived at Frankford-Torresdale on time (9:15am) and I was taken back right away. I was weighed-in - ugh, worst part of the whole day - and then the lab tech asked me which arm she could draw blood from. I told her, "Neither, I have a POWER PORT." Duly impressed she sent me into the chemo room to have one of the nurses draw the blood and start the treatment. The chemo room consists of about 25 lounge chairs that were filled constantly with a variety of patients - some treatments take longer than others - but once someone left their chair wasn't empty for long. Since Col and I must have had that "deer in the headlights look in our eyes" I was immediately pegged as a new-bee. This meant that a funny, irreverant, caring nurse named Dan came over and told me that his name was 'Dave'. He quickly moved on to more helpful hints like which lounge chairs didn't go all the way back, how to minimize side effects, and that Thursdays are soft pretzel days. All of the staff and volunteers were kind and compassionate, but I had the most contact with Dan and Lynn who were also funny and had a way of putting me at ease. I was most concerned with what it would be like to access the port and if I would feel any pain throughout the process. I got honest answers and the whole day went much more smoothly than I had expected.

Dan drew some blood from my port and I was so relieved. Then Susan was able to slip away from her patients so that we all could meet with Dr. Kennedy first. After that I was hooked up to the chemo and given a cozy blanket. I was given decadron, emend, benedryl, taxotere, adriamyacin, and cytoxin. The adriamyacin was red and had to be "pushed" but the others just infused uneventfully I am thankful to say. They have to tell you what "might" happen and I have to say that that is always a bit unnerving.

The rest of the time was an adventure in people watching. We were there for 6 hours from start to finish (it will be slightly less in the future because I won't always have an appointment first and the initial teaching is out of the way). We were sitting in a little alcove area that I liked for many reasons - a little more privacy, and the TV was not on. We were visited periodically by volunteers bringing around trays of goodies (not what I expected for this group...) and occasionally the volunteers would take a break and sit in our alcove to talk about themselves and/or their pets. We also had the pleasure of chatting with another patient who "came to visit me" (He was done with his treatment but not with his snacking...). For the sake of confidentiality, "Ralph" (not his real name), is an 83 year old Frenchman who likes to write his age out in Roman Numerals - LXXXIII - because it seems more "majestic" and "olympian". He calls himself a "lifer" and has so many stories that you wish you had a recorder. Even my benedryl induced stupor didn't slow him down. He has recently given up driving because he can "only see out of one eye - and not well at that". He had been driving by following the tail lights of other cars and realized that it could present a problem if someone's tail light was out...I am sure I will see him again.

I am trying to be compliant, flooding myself with fluids, and "grazing" instead of eating regular meals. My first night was ok and I slept well. Friday morning it was back to Torresdale for a Neulasta shot. The staff recognized me and asked me how my first night had been. They could not have been nicer or more comforting. On Wednesday I will see Dr. Kennedy for a follow up visit since this was my first chemo, then I will follow up with her about 2 weeks after treatment as a rule. On Friday and Saturday I will continue to take oral Emend and on Friday, Saturday and Sunday I will continue to take oral decadron. Who knows what Monday will bring. The Emend is to try to prevent nausea and vomiting but it doesn't work if it has already started so I have 3 other meds in my arsenal just in case...

All in all, better than expected...so far...I am grateful for that. Thank you for all your well wishes and prayers. And thank you for all of the gifts and comfort items - from the books to the softest socks in the world - I am loving all of them. Sue Sipos, that "bag of goodies" is really coming in handy about now so thank you so much for that. Anyway, one down and 5 to go....I'll keep you posted (get it?)...

Chemochemochemochemochemo

Hi, it's me again. I finally have a start date for chemo - Thursday, October 23rd, God willing...This will give me enough time to finish up with the dentist - I'm in the final phase of getting 2 implants and it would not be good to have inflamed or irritated gums once I start chemo. Just for sport I think I will count how many times I say that word today (chemo).

I was thinking about how when people have babies one of two things happen. Either (A) their entire house becomes a playpen (I know you know these people) and their lives, including all of their conversations revolve around the baby, or (B) their baby becomes a cherished part of a family that has diverse interests and gifts. I want my cancer to be the baby in the second scenario. While it is true that I love my cards and books around me, and I do have some items around to make the chemo (9) experience more comfortable, and there are one or two pink ribbon items in sight, once I get into a rhythm, I hope that the cancer experience becomes just a part of a life that is filled with other things. Of course I will continue to inundate you with all of the cancer/non-cancer updates that are fit to print.

On the gratitude list for this week is a wonderful visit with a new friend, Anna Marie, the deepening of my devotional time, some fabulous rice pudding (thank you Bonnie), and all of you for supporting me by reading this and in your own special ways. I'll let you know how ...you know what....goes next Thursday...unless I write sooner just because. Thanks.

Cliffhangers?

Hello, I've been waiting to blog until I have a date for my first chemo (I have to call Dr. Kennedy's office on Monday) but from what I've been hearing, some of you enjoy reading these updates and have been on the edge of your seats waiting to hear about the PET scan-Ultrasound detour. So here it is. I went for the ultrasound on Tuesday night, Oct.7th (the exact dates are for my memoirs), at 6:30pm. The earliest appointment had been for the 16th but once Kathy (in Dr. Kennedy's office) checked with her to see if that would be ok she came back on the phone and told me that I had an appointment for later that same day...the privileges of Stage 3...and a physician who is an amazing advocate.

I had to drink 32 ounces of water an hour before the test - and Hold it! For you menopausal and perimenopausal women out there - you know what an ordeal this was...hoping not to cough or sneeze...and for me, inhibiting all possibility of laughter. Fortunately this was going to be a...let's say...thorough...ultrasound and that is no laughing matter in my book. We arrived on time, I was taken in exactly at 6:30, and just before 7p.m. we were on our way to Callabrisella's (a mom and pop Italian restaurant in Bensalem) to unwind and enjoy three delicious entrees that would also serve as lunch the next day. By the end of dinner I had gone to the bathroom 3 times...

I spoke to Dr. Kennedy on Thursday and she said that everything "looked fine" and that there was a small fibroid that was probably causing all the commotion. I will be calling her office to schedule the chemo on Monday. I'm going to see if I can start on Thursday or maybe the following Tuesday, or maybe in the spring....just kidding...I have a few loose ends to take care of first....like getting the caps on my dental implants and other fun stuff. As soon as I know, you folks will be the first to know. (this blog is like a good cliffhanger...)

Until then,
Thanks.

A Little Snag...

Hi...just a quick note...instead of "Your PET scan is clear, let's move on to the chemo," I got "I don't exactly know what this means but..." Translated, that means that "something" was seen on the PET scan concerning my uterus - technically, linear physiological activity. I will have to get a pelvic ultrasound before I start chemo. Hopefully this is just a fibroid and we can get on with things...

On a happier note... I was able to do some drumming at the Susan G. Komen Race for the Cure this weekend and I have to say that it is inspiring to participate in this event. I am attempting to upload some photos to the blog (for your multimedia enjoyment), including the giant mushroom, the think pink book club, and a "before" photo while I still have hair... (scroll down to past entries to see photos - 3 altogether up to this point)

Breast Cancer Awareness Month (and my PET scan)

The irony is not lost on me that I had my PET scan and will be launched into the treatment phase of this journey just as we are entering Breast Cancer Awareness month. You can't miss it. I went food shopping the other day and got breast cancer paper towels. The Progresso Soup labels have a pink border, and just about every product is somehow involved. They are all contributing a portion of their proceeds to this cause. What a great concept. If you walk into a department store you will see Breast Cancer apparel. The attention to this particular disease is not new this year but I am seeing it and reacting to it a bit differently. Because now I am living it. It has always been a cause near and dear to my heart that I have supported - after all, my mother has been a breast cancer survivor since I was 10 and so many friends and family have been affected by it. But now I am living it. It is an odd place to sit. You have heard me joke about getting a pink wardrobe, but there is something powerful about being part of a group of extraordinarily strong women. I am at the very beginning of my road. I can't imagine the experiences that lie ahead but they will change and shape my life. I suspect that they will strengthen the connection with all women who have been told at one time or another, "You have breast cancer." But I want to remember this, I want to remember that I don't have to be "living" something in order to have real empathy. I thought I was pretty empathic and in fairness to me, I am - but I didn't always pay attention to the day in and day out "little things" that are not often spoken about when I have had conversations with folks who are dealing with catastrophic illness. We would talk about the "big" things mainly, so I didn't really have the whole picture. So the learning is beginning for me. I hope to do some writing other than this blog that I can reflect on and use and perhaps even share with others. I am just glad that it is not Irritable Bowel Awareness month because wearing a T-Shirt or eating food labled "irritable bowel awareness" would just be awkward...

And now, where were we...the PET scan...I had to eat high protein and low carb the day before the test which is not that difficult to do except that if I have restrictions placed on me I need to rebel. I really wanted ice cream. But I am a compliant patient...chicken and water...I had the scan done at Frankford-Torresdale in a trailer that drives onto the parking lot every Wednesday and every other Thursday. They were ready for me as soon as I got there and had to check my blood sugar with a finger stick. It was fine so they went on to the adventure of finding a vein to inject the radio active substance into. I will spare you the details of that process...can't use the port for this...argh. Then I had to be still and quiet in a darkened space in a lounge chair for 45 minutes (all the comforts of home...)When it was time they made me go to the bathroom to empty my bladder (of radio active urine) and then lie on a table. Since both of my arms are not able to go over my head to the extent that they wanted (like the double jointed contortionist in the circus), they strapped my arms to my side and told me that I could breathe throughout the test(good news) but I couldn't move(not so good news). The test was going to scan first and then scan 6-7 sections incrementally for 6 minute intervals each. Just for sport I thought about what it would be like if I had an itch somewhere and then I thought that that was probably not a good idea so I concentrated on my physical, emotional, and spiritual feelings, which usually in these situations have been feelings of being surrounded and held by God - seriously. The thing I liked was that when we started, the tech Mark (who is in another room) said,"Can you hear me?" I said, "Yes." And then he said, "Good, I can hear you too in case we need to talk to each other." And then I didn't hear another word from him until the scan was done. Usually the techs are so chatty - "You're doing great", "How are you doing, Susan", "Only 3 more to go", "last one", etc. Comforting at times, but breaks into my prayer time. When I was done, they burned a CD of the scan for me and that was that. The scan is in the computer system for Dr. Kennedy to see at any time but I am sure she will wait to hear the radiologists reading before she gives me the results.

After we said good-bye to Sue, who was still at the hospital with patients, we went to take a picture of the giant mushroom to upload to this blog...it really is a "must see". Unfortunately, due to the rain (and Sue S kicking it over) it is no longer white. It is a brownish slimy thing but hopefully, you'll get the picture. Then we went to Dairy Queen for the last time this season. As a matter of fact, they put out their "Closed for the Season" sign right after we got our order...endings and beginnings...

Well it is an absolutely gorgeous day today so I am going to try to get out and enjoy it. I will write more as the spirit moves me and let you know the PET scan results and when chemo will start. Thanks for listening...thanks for everything...