Catching Up

So, I wasn't going to blog until next Wednesday after the PET scan but apparently even in blogging I'm long-winded and chatty. On Wednesday the 25th I went to Frankford Bucks to try to have my blood drawn. As per Dr.Kennedy's suggestion I asked for the person in out-pt lab who had been there the longest. That would be Vicky. She was at the hospital when it was still Delaware Valley and Dr. Kennedy was just a resident. I stayed true to myself and was still the most difficult stick she had seen. At one point I asked her what would happen if they just couldn't get the blood. She responded," I don't really know because it has never happened." Although she was a little older by the end of the experience, Vicky was amazing and managed to get all the blood we needed from two different sites. I was relieved.

Then we went to book club where everyone wore pink in my honor (Sonya even wore a robe and slippers because that's what she had in pink). And we had pink food - salmon, shrimp, macaroni, raspberries, pink champagne, cosmos, pink lemonade, pink cupcakes with breast cancer ribbon icing....It was good to see everyone and I appreciate the gesture and the gifts - favorite children's books and cancer "goodies" - more than I can tell you. Thank you, Tracy, for hosting, and thank all of you for being there and for continuing to support me.

On Friday, the 27th, we got to Frankford Bucks at 7am for the port placement. (All the bloodwork was fine by the way, and I had gotten a call telling me that the mugascan results came back and that everything was a "go" for chemo so far - except, perhaps, for my emotional state...) My nurse, Lynda, started my IV on the first stick(!) (Thank you God) and the procedure went along without a hitch. I was awake but numbed and sedated and they told me that the drugs usually have an amnesiac quality to them. Maybe so, I don't remember many details of the procedure but I sure can tell you all the details of one of the staff member's son's ankle surgery...I have one of those faces...people just want to tell me things...

So now I have a Power Port. Apparently this is something new. I have to carry a card in my wallet and I even have a bracelet and something for my key chain if I want. Not only can it be accessed like a regular port, but with a special needle it can be used for CT contrast, etc. I am hoping that this will make my life a little easier. I have the PET scheduled for Wednesday, Oct 1st, I want to get my hair cut and go to the dentist before chemo starts, and maybe get a few things squared away at the practice and the Sharing Network...the juggling is getting easier.

More next week....unless I can't sleep...

Tiny Veins and Giant Spores

Hello...I thought I would drag myself away from shopping for hats online to write a brief update. Yesterday I went to Frankford Torresdale for my mugascan. At the desk the receptionist asked me to sign some forms for release of information, etc. She handed me a clipboard and I proceeded to sign the necessary forms...well...she looked up at me and said, "Oh, just one form...oh..." Apparently I had signed all the forms on her clipboard... thereby giving my consent for everyone to have a mugascan into the new year - huzzah! (Luckily, I am not the first person to do this so ther were only about half a dozen forms there - I like to use poetic license...)

Then came the mission impossible search for a vein. I needed two injections 20 minutes apart, with the second one containing a radioactive substance so that they could take pictures of the chambers of my heart. It was tough but they were finally able to get both injections into my hand. It's even harder now since they can only look on my left side. When I went into the scanner, the techs couldn't see anything. I was wondering if that had anything to do with the fact that I couldn't put both hands up over my head like they asked. (They had finally told me that I could put one up and one down) But apparently they couldn't see anything because "it" was taking a longer time since they had to inject "it" into my hand. I offered to hold my hand up and pump and that seemed to work. The whole process took about an hour and a half. We went to DQ last night after dinner to celebrate.

Today we went to see Dr. Kennedy to talk about chemo. I learned more about chemo than I ever wanted to know. My particular drugs are pretty powerful and have potentially many side effects. Luckily there are medications to try to prevent or stay ahead of these side effects. I got about 8 presciptions. I will lose my hair and there is nothing to do about that except to find some comfy head coverings. I'll take medications at home before and after each treatment - which I will receive over 4 hours or so as an out-pt every 3 weeks. I'll start the chemo when all the test results are in. The mugascan results are not in yet and I still have the PET scan scheduled for next Wednesday (keep a good thought for that one because I really don't want to move into stage 4...)

I had to have blood drawn today for the port placement scheduled for Friday. After 7 "extended" sticks we all agreed that I would go to Frankford Bucks out-patient department tomorrow and have them try. I am glad I'm getting a port...

The most memorable part of the trip was seeing a GIANT Mushroom on the edge of Dr. Kennedy's parking lot. It was the size of a basketball and there were more just like it in the woods nearby...I think I saw this one on Alfred Hitchcock Presents...more later...as always - thanks for listening.

Next On the Agenda...

Hello...I'm back. Well, after that last blog I had to take a breath and have a long talk with God. I am happy to say that not only are we still on speaking terms (me and God), but that our relationship is stronger than ever. The author Anne Lamott says that there are really only two prayers -"Help me, help me, help me," and "thank you , thank you, thank you." I have been praying both of those prayers non-stop for some time now. I do feel the presence of God and I am comforted. Earlier in the diagnosis I actually felt the presence of my grandmother and that was comforting as well.

Today was a red letter day for me - I got my last drain out!! Many of you have seen me catch a piece of clothing on a door jamb or on the back of a chair, etc. Well imagine how nerve-wracking it was for me to know that I was always just a hair away from catching that tubing on something. Just thinking about it now makes me cringe. So I went to Dr. Simmons office (she was not there...I am assuming that she was home enjoying her new baby boy) and her nurse Cindy did the honors.

I did spend a beautiful day down the shore after all that, and when I got home I started in with the next round...I am scheduled for a mugascan at Frankford Torresdale on Monday the 22nd to make sure that my heart can handle the chemo - hope there are no surprises there...I know they have to inject dye and I have to be able to put my hands over my head so I am already starting to hydrate and brush my hair incessantly in order to strengthen my arm... On Tuesday, the 23rd, I have an appointment with my oncologist, Julia Kennedy, to discuss what chemo will look like for the next 5-6 months. Then on Friday, the 26th, I will go into Frankford Bucks and have a port put in. On Saturday, Susan is riding her bike 75 miles - city to shore for MS, and on Sunday I'm planning to go to a wedding. Then on Wednesday, Oct 1st, I'll have a PET Scan and then I can relax until chemo begins (which will probably be 20 minutes after I get out of the PET Scan...) So, I don't know about the rest of you but my calendar is full. Even so, Mauri, if it is at all possible I would love to be your poster child drummer at the Susan G. Komen Race on Oct. 5th. I can't call myself a breast cancer survivor yet but I think that is just a technicality...(power of positive thinking).

I'll be back next week, if not sooner, to tell you about all my adventures. Until then - Thank you, thank you, thank you...

What?? I mean What??

OK...so...we're back from the breast cancer team meeting. As you may remember, my biggest concern was around the staging of the cancer. We had felt that it would be Stage One or if the tumor was bigger than 2 cm then it would be stage two (as long as the lymph nodes were clear). Well, according to the pathologist, the cancer measured 8.5cm...clearly a shock to us all - including Dr. Simmons who said that she promptly called the pathologist and asked that the "typo" be changed. She said that he called her back within minutes and said, "I don't make typos." I said, "My whole breast does not measure 8.5cm..." Anyway, in that moment, I went from joking about wearing too much pink, and learning to feel what it's like to be a person with cancer (cancer patient?), to "Yikes, I am in a real fight for my life." (No melodrama intended) This puts the staging of the cancer at a Stage 3...

There are some positives though, we found it and I had a mastectomy - I owe my life to Dr. Canavan's persistence in the face of negative studies, the sentinal node and the lymph nodes are clear - BIG Plus, and there are one or two others that have to do with hormones, etc. that don't mean alot to the average person without detailed explanations.

So, here is what I know. Dr. Julia Kennedy will be my medical oncologist. She saw me as a second opinion for the fake lymphoma two summers ago and has the results to my PET Scan, etc. from that time that were all negative. Some of you may remember that I even had a bone marrow biopsy at that time. I really like and trust her. I really like and trust the whole team. She will be arranging some tests for me (CT/PET scan, mugascan) and I will have a port put in so that I won't have to be stuck a million times for bloodwork and chemo. I'll start chemo in mid- October. Dr. Kennedy said she'll give me the details when I see her in her office but I will be getting a combination of Toxotere, Adriamycin, and Cytoxin every 3 weeks or so for a period of 20-24 weeks (5-6 months (!) those of you who are doing the math) This will be followed by tamoxifen and then femara.

Then I saw Dr. Eric Gressen who is my radiation oncologist. His sense of humor is a good match for mine. Once the chemo is over, I'll have 5 weeks of daily radiation. Then, if Dr. Simmons has had her baby by that time...(actually, she is scheduled for a section tomorrow at 10am, so please keep her in your prayers), then I will have another mastectomy with simultaneous reconstruction of both breasts. Dr. Simmons said (and we all agree) that she would never feel comfortable telling me that everything was okay with the left breast considering how many curves were thrown our way with the other one. Also, most of the people in my family who have had breast cancer (and there are many) have been diagnosed with cancer in both breasts at some point so this makes sense to me. She said that if all things go in our favor I should be stepping back into the world treatment free (except for tamoxifen,etc) by this time next year. Then I got rid of one drain and kept the other till probably next week.

Hmmm...This is a lot of information for you and for me...so I think I need to take a breath and regroup a bit. I am grateful for all the positives, I am grateful for all of you, and I am grateful for my sense of humor that still seems to be intact - I'll need all of these and more before this journey begins to wind down. I need to keep writing and I need you to keep reading. Other than that, your prayers and good wishes are always welcome. Thanks for listening...

One Week Post-OP

Hi! Just a quick update - I was able to go to JFK yesterday to be evaluated for certification as a Clinical Chaplain. I was there from 1pm to 3pm but I was finally recommended for certification. (I only had to use the cancer card and pull out my drains once...). This is a big weight off my shoulders. Now, at whatever point in the future I'll be able to work regularly again, I'll be able to get a job. I was exhausted afterward but I think I would have been under any circumstances. Tomorrow I have my post-op appointment with Dr. Simmons (who apparently didn't have her baby yet...) I get to meet with the Breast Center Team - medical oncologist, radiation oncologist, nutritionist, plastic surgeon, etc. They all review my case and offer me options. Thank you all for your continued prayers and well wishes. I am enjoying the drawings, flowers, plants, fruit, cards, blog responses and e-mails. I've heard from some of you that it has been hard to post a response to the blog. You have to create an account first (free) so that just anyone can't post an inappropriate response and not be accountable. If you're still having problems let me know and I'll have someone who knows what they're talking about (clearly not me) walk you through it. It has been very helpful to read your comments (and song lyrics...) More tomorrow after the doctor's appointment...

More from the Uniboober...

Anyway, where was I, Sue went to Goodwill and bought me some Large men's shirts that button down the front so that I could cover all my paraphenalia. Col's become an expert with the drains (it takes a village...), and Mary Lou came over to visit and to accompany us to the graduation (or to stay with me if I wasn't up to it since Colleen is doing the invocation and the benediction) I slept a little in the afternoon and then we headed out to the Keswick Theater. I saw Dan Fogelberg play there in his last east coast concert before his testicular cancer diagnosis. (Hey - I have a captive audience - sad, but you are reading whatever I choose to type...I'll try to be selective) Thank you to everyone who showed up to support Sue - Mauri, Lorraine, MaryLou, Liz, Tara, John, Joe, and especially to Colleen for doing the prayers - they were perfect. Sue worked really hard and it was nice to be able to celebrate her achievement with her. Sue also won the Board of Trustees Award for Excellence in Nursing. It was a standout moment that I didn't want to miss. It was my intent to update this blog when we got home but apparently I fell asleep with my hands on the keyboard...

I only woke up once or twice so I am well rested this morning. I plan to to nothing much other than resting until my next adventure.

Oh, I forgot this part. The sentinal node was clear! yea! Which is good news. Dr. Simmons took out more lymph nodes and sent them to pathology though. Since she did a mastectomy she won't know the size of the cancer until the pathology report comes back in about a week. Then she will be able to stage it and move on to the next level of treatment. If it is over 2 cm then Stage 2, under 2cm, Stage 1. There was some talk of anti-hormonal medication but more on that after my post op appointment. The pain pump will be taken out by us (!) in a day or two, and the drains will be taken out in the Dr's office next week. Thanks for listening...

Introducing the Uniboober

Hi! I'm back! Interesting detour...We had a great weekend at Colleen's folks - great food, great company and Susan learned to paint strawberries, ladybugs and snowman faces. I lounged at the pool and even went for a boat ride (thanks John). Monday night I had to stop eating and drinking by midnight. Usually if you tell me I can't do something I want to do it all the more but I was prepping for surgery. Butter Pecan ice cream was my "last supper" at 10:30 pm...we won't mention the goodies we took home from Sharon and Tim's. I read and listened to all your well wishes. Know how much they make a difference. Before this I knew that they were a nice thing to do but I didn't realize just what an impact they have. And thank you Mauri and Lorraine for the beautiful song (to the tune of Bye Bye Blackbird...well you get the picture...) Tuesday we were up bright and early and in Frankford by 8am. The surgery was scheduled for 10:15am but I wasn't taken in to the OR until almost 1. The waiting was hard. Once I got there I just wanted it to be over and on the way to recovery. Everyone was really lovely but the anesthesiologist could not wrap his mind around how I could not possibly be pregnant. He wanted a urine specimen even after I told him that I was gay. He said that, "Women can get pregnant till they're 60 years old and it was not an unreasonable request"...I told him that by "gay" I didn't mean happy (necessarily, but of course I am happy...maybe not on that day but usually....) He had a Russian accent and I was thinking that maybe something got lost in the translation. He remained stern but I didn't give a urine...Then he couldn't find a vein to start an IV and began sweating. They opted to bring me in to the OR without one and put a gas mask on my face and get one there. He got to push the stretcher with the Nurse Anesthetist and was explaining to her all the while that it wasn't his fault - that it was just my veins. Perhaps true, I was a little dehydrated, but it interfered with my loving thoughts and positive imagery that I was trying to bring with me into the surgery. After he bumped the stretcher for the second time in the doorway to the OR I looked at the nurse and said, "It isn't his gift." She started laughing and he walked away in a huff. I went to sleep knowing that this was the person who was going to wake me up after all was said and done...maybe I shouldn't have been so hard on him...

I woke up in the recovery room somewhere around 3 o'clock (there was a clock on the wall) And by 5-5:30pm I was in my room. I had a foley catheter, nasal cannula, IV, two drains and a pain pump. And truthfully, I felt better than I expected. I asked for some morphine (they told me to stay ahead of the pain) and I felt great. That was the last pain medication I needed - the pump really did its job. Susan and Colleen were great and learned how to empty my drains (although I think Susan already knew having gone to nursing school and all) By 10:30pm I was asleep and slept well for a few hours at a time, just waking up for vitals. The nurses and CNAs were amazing. They were upbeat and responded well to my humor. Now I don't want anyone to get the wrong idea and think I'm living in denial - I had my prayer time and my healing meditations and my ongoing grieving for the loss of something near and dear to my heart, but those of you reading this know that humor is my hallmark. When my cousin Joey had a kidney removed due to cancer I brought him a can of kidney beans. That broke the tension and allowed us to really talk. Now back to my story.

Wednesday morning I knew I was going to be able to talk my surgeon into letting me out early to go to Sue's Nursing School Graduation. By 6am Angela (great nurse) had pulled everything out except the pain pump and drains. I was beginning to feel like myself again. Sue was with me before graduation practice and Colleen was there to see the reaction on Dr. Simmon's face. I was the healthiest-looking cancer patient she had ever seen (in part due to the lovely tan I got this weekend). I had done everything on the list I needed to do before they would consider discharge - I peed on my own and I ate something solid (if you consider a pancake solid). I was home before lunch -less than 24 hours after surgery. It is amazing to me since I remember my mother's surgeries requiring a much lengthier stay. I'm going to post this and then continue my story.