#11 December 19-28

So the family got in for Christmas, and we’ve spent the last two days trying to see just how far my feet can go without dropping completely off. We had a leisurely day on Sunday having breakfast together and trooping off to the movies to see Star Wars, but Monday, we all went to the Museum of Science and Industry. I clocked close to four miles that day, and museum feet were hollering loud and clear.

On Tuesday, just to see how much my feet could really take, we took the train in to town for the Chicago day of sightseeing. We saw the Bean, the Macy windows, Christkindl Market, Giordano pizza and the Sky Deck (which was totally socked in with clouds.) By the time we got back home, I could barely eat my Italian beef from Portillo’s before I had to go home to get some rest. I was in bed by 8 p.m.

The next day, I had to be at the hospital at 7 a.m. the next morning for my port placement which went fairly easily. They got the IV in first time, always grateful for that, and although I was in what was called “conscious sedation,” I slept through most of it. I really only remember feeling the Dr. pushing the port into place, and that didn’t hurt, just pressure. They had my face turned away to the left, while he worked on my right. He did introduce himself, but I never saw his face.

I was only in recovery for a short time, and then my husband drove us home. I was pretty sleepy, and took a nice nap when home. The area where the port was placed was sore and felt funny when I would start to get up for the first couple of days. I felt like I had to hold my hand over it as if to keep it from falling out, but after that, it’s been fine. They closed the incisions with glue, and told me not to pick at them, but just let it naturally fall off. Of course it itches, so I want to pick at them, but I’m being a good girl for once.

We had a wonderful Christmas. My granddaughter, daughter, and their foreign exchange student took over the Christmas dinner cooking like champs. I’m very picky about my dressing for the turkey (or stuffing as some call it,) and my granddaughter made it perfectly. I had tried to write down the recipe as best as I could, but you never know if you get it all in there until you taste it. It’s my favorite part of the meal. All too soon, they were all off back to their home in Texas, while my son and his wife headed to her family in Michigan for New Year’s. We had a restful Sunday all by ourselves, and then on Monday ♬We’re off to see the Chemo – the wonderful Chemo and Draws♬

The morning started with a winter storm warning, wouldn’t you know it? However, we left early, and it was only raining on the trip to the hospital, although by the time, we had been there a while, you could see sleet sticking to the grass.

The only real glitch to this chemo day was the “draw.” Every time you go for chemo, you have to have blood drawn so they can see if your blood counts are OK. I have known people who had to go home or even into the hospital to get their blood counts up before they could have their chemo session. Of course, that would be very unusual to happen on a first chemo, since they haven’t had the chance yet to destroy your blood counts. These things must be done delicately.

I had specifically asked at my oncology appointment if the blood draw would be taken from my port after it was installed, and was told that it would. When I had my blood drawn after my oncology appointment, I had asked if I would be coming back to that lab when I had my chemo draw. I was told yes.

As soon as we got to the hospital, I went immediately up to the blood draw lab, and discovered that the technician couldn’t take the blood out of my port, only out of my arm. Evidently only the nurses and doctors can do the port. I could walk all the way over to the infusion area, and get it out of my port, or just let her do it in my arm. I had prepared my port with EMLA cream, so I wouldn’t feel the stick - all for naught. So we did the arm thing again; however, she was very competent, and got the needle in first time.

We were still early for my Dr. appointment, so we had breakfast at the hospital café, and then walked over to the infusion area, just in case there was something else they needed to do with my port, but they didn’t. The infusion area is a good trek away from oncology, and they are building a new one that is close to oncology, but it won’t be open until my last chemo day. If that time line holds, I may be one of the first to use it, and it will be my last time. Hooray!

We then walked back over to oncology, and I met another very good nurse who cleared me for chemo. She too, gave me her number and email, and told me to call about any questions etc. They are very thorough.

Finally it’s chemo time. The time I had been dreading since the beginning of this clambake. The room is full of people in various stage of chemo, the most obvious sign, of course is lack of hair. Some people have hats, some wigs, and some scarves. The slender people look the worst. I guess that will be one odd in my favor. If I lose a lot of weight, I won’t get that cadaverous look.

You wait till your restaurant buzzer goes off and they take you to a room with two infusion chairs separated by a curtain. No one was in the other side. The chair has a television attached to it, although I never turned it on. I had packed a big bag with snacks, drinks, laptop, kindle, blanket, socks, hat etc., but didn’t wind up using most of them since I didn’t have that much time to use up.

First chemo is education time. My nurse Kathryn was very informative. She explained everything, asked me many questions, and it was over an hour before we finally got to the business at hand. I had reapplied the EMLA cream before coming, and she accessed my port easily and with no pain.

I did not have a pre-chemo “cocktail” of Benadryl, steroids, anti-nausea, or anti-anxiety medications that some are given. I was given a Zofran anti-nausea pill (for which I also have a prescription at home) and that was that. She said since I had taken the “Dex” (nickname for the steroid) as my oncologist had prescribed, I didn’t need it in the IV.

I was first hooked up to a saline drip to flush out the port before she started the first chemo bag which was Taxotere. This one is the more lethal of the two drugs that I have to take, but not nearly as lethal as some. Still it has lots of interesting side effects. Because my oncologist had prescribed the “Dex” for me to take the day before, day of, and day after chemo, I hopefully would not have any allergic reactions to the Taxotere. She starts the drip.

I am sitting here listening to the cast album of “Something Rotten” while having poison dripping in my veins. Sounds very Shakespearean, doesn’t it? I feel no different. No reactions, nothing. Kathryn tells me they’re putting it in slower today since it’s my first time, but it seems to go very fast. Suddenly the Taxotere is empty. I ask her if there’s another bag, but that’s it, just the one. She flushes my port and starts the next drug Cytoxen. It’s only supposed to take 15 minutes. Before I can hardly think about it, it’s through. A quick saline flush, and I’m outta there!

I feel great. We pack up everything. Kathryn gives me a sheaf of instructions about what I just had done, and what to look for, and who to call if I have a problem, and I get to go home.

The sleet/snow has turned into rain, but the roads are slow since we’re getting out right about 4 p.m. Rush hour has already started. I had asked my oncology nurse about my ability to drive, since my husband can’t drive at night, and she said I should be fine, since I wasn’t getting any medications that would impair my driving. I drove home without a hitch.

The “nadir” or peak of side effects can come about day 5-8 or so. There are lots of them – hair loss typically occurs at 14-21 days, mouth sores, constipation from the anti-nausea meds, diarrhea from the chemo meds (you’d think the two would work together and make everything normal,) the “crash” from coming off the “Dex,” taste bud changes, smells, dry skin – the list goes on. 

Not everybody gets everything, so now I just wait for the other shoe to drop.

#10 November 23-December 14

Boy, it has been a long time since I’ve written in this blog. I guess I’ve been busy, although cancer never strays too far from my mind, other things have taken precedence.

To backtrack, I had my post-op visit with my surgeon, and everything seemed to be healing well, but she didn’t remove the *#%& drain. They want me to be draining less than 30 cc in a 24 hour period, and I was close, but no cigar. I talked to her about my upcoming trip to Vegas and the advisability of wearing a compression sleeve and glove. I had read that this is sometime used as a preventative for lymphedema. She said that I might need to wear one, but she also suggested I see the lymphedema specialist to get checked out first. She didn’t want me getting a sleeve that I didn’t need.

So we made a second post-op appointment for a hopeful drain removal, and also an appointment with the LE specialist. Here is another of the reasons that I’m glad I’m going to the University of Chicago. Not every place has someone so specialized.

Now I’m back home with the drain for another week. I feel OK, some nerve zingers occasionally, and the worst is the feeling that my upper arm has a wrecking ball which keeps slamming into my left breast. I have places that are very numb, and places that are very sensitive and sometimes they interact. And I hate the drain. Hate. The. Drain.

My husband and I had a very quiet Thanksgiving. We’re still on our Seattle Sutton meals – even for Thanksgiving, since I know that Vegas is coming. I will give up the diet when we go to Vegas. We got our Christmas tree up, trained the dogs to leave it alone, and put up the decorations.

Finally the 30^th rolls around. I have to be at the Lymphedema therapist at 8 a.m. Of course, some idiot makes an online threat about shooting people on the University of Chicago campus that day. (They were able to identify him, arrest him, and another young man has ruined his life.) All classes are cancelled out of an abundance of caution. Medical appointments continue, only with limited ways to enter the buildings. Only certain doors are unlocked, and since I haven’t been to the physical therapy section before, there is a bit of a learning curve to get there. Luckily as we are headed to what we think is the entrance, someone tells us it is closed, and we only have to backtrack a short distance.

I do manage to make it on time and meet my therapist who is just wonderful. She is very thorough. She measures my arms, and says that my left one is about 1% larger, but nothing to worry about right now. She doesn’t feel that a compression sleeve will be needed on my flight, but wants to see me on my return. She’s very happy about my range of motion. I am, unfortunately, at high risk for lymphedema because of the high number of nodes I had removed and the fact that I already have large arms (oh, the heartbreak of heredity,) so being proactive is comforting for me.

I then trek through the maze across to my breast surgeon hoping, hoping, hoping that the drain will be removed.

YES!!! ♬Drain free – as free as the wind blows! ♬

What a great feeling! And now I can sleep on my stomach too! Will wonders never cease? Still no sleeping on the left side though, but so happy about stomach sleep.

My surgeon is finished with me. She says I’m healing well and don’t need to see her until my next mammogram. I make an appointment in September 2016, but now I also have to make an appointment with the oncologist.  This is the one I have been dreading. Besides just the awful fact of having cancer, chemotherapy is the thing I have feared the most. I make an appointment for Dec. 14^th, same day as my next therapist appointment.

Now, I just put it all out of my mind and concentrate on our Vegas trip and the upcoming Christmas celebration with our family. We did practically all our shopping online, so every day the dogs are tortured with the UPS (which Scout particularly hates,) FedEx, and USPS trucks stopping by. We’re not sure why Scout hates Brown, but she does, and she can hear their truck coming from way on the next block.

We also decided to have someone come in and finish the painting which I have been painting at for about three years.  We have slowly been renovating the kitchen, and with each new appliance, I would paint the wall behind it before it was delivered, but the rest of the kitchen wasn’t touched. I also had painted a small swatch on the bathroom wall of the wrong color, bought the right color, but still had not finished it.  I plan to do a faux finish on both those rooms eventually, but we got a bonafide painter to come in and finish what I had not. He also did some texture painting in our bedroom for which I again, had bought the paint, but had not finished the job. It took him all day, it feels so good to have that done. The kitchen floor and backsplash are being redone as well, and the tiler finally was able to get us into his schedule, so he’ll start when we return from Vegas.

December 7^th, we head up to Midway to fly to Vegas leaving our dogs in the capable hands of our pet/house sitter. We arrive for a 10 a.m. boarding which gets pushed to noon 15 since the entire city of Chicago is socked in by fog. By the time we finally get to our hotel in Vegas well over 2 hours late, I am completely wasted. No, not that kind, I’m a teetotaler now. Just flat exhausted.

We unpack, and head downstairs to the casino, but I’m so tired, we probably only stay about 30 minutes, then back up to the room. We always stay at the Bellagio and get a fountain view room, and last year, we started having room service deliver our first night dinner so we could watch the fountains while we ate. We chose to do that again this year. It was every bit as wonderful! I had double lamb chops which were to die for – especially after having been on diet food for weeks.

The next morning we have a sensible breakfast at the Bellagio buffet. No, really, lean things like smoked salmon, fresh fruit, multi-grain croissant – probably still over our calorie count, but it is vacation, right?  We are on the casino floor when some guy asks if I would like a drink. I automatically say, “No, thank you.” Then turn around and it’s my brother from Texas who flew in for one night just to spend some time with me.

We have a great day, pick up tickets for Ka, one of the Cirque de Soleil shows we haven’t seen, have an afternoon rest, then my brother takes us to dinner at the Lakeside Restaurant at The Wynn. It’s a great meal. We’re outside on the patio right on the lake which has little mini-shows of various types (lots of lighting changes, music, and can’t forget the “orb sex” – just think about that for a while) that go off about every 30 minutes.

This picture is of the giant frog who sings. Great food, great company, what’s not to like?

After my brother drops us off at the Bellagio that evening, we stay on the casino floor and play the Titanic Slot Machines. Both of us are really hitting the bonuses etc. and I get the one where the “Heart of the Ocean” is wild. Then this comes up

Every time, you get a big win, Celine Dion sings “My Heart Will Go On” as long as the money is being paid. She sang a long time on this one. At the end of the evening, I cashed out almost $600 on this one machine.  Not bad for pennies.

Every night, we are able to see the Bellagio fountains from our window and hear the fountain music from the TV in the room. When they do Rachmaninoff - Rhapsody on a Theme of Paganini, the music and the fountains are so beautifully choreographed, it brings me to tears.

My brother meets us for breakfast the next morning, and we really enjoy the quality time together. After he leaves, we go to the concierge to print our boarding passes for the next day, and Superman comes into the internet kiosk. I am not making this up. It was a guy in full Superman regalia. I said, "Are you looking for a phone booth?" You wait all your life for an opening like that. 

My husband and I head out for some casino hopping, have dinner at the Aria, then see Ka at the MGM. We’ve seen a lot of Cirque de Soleil shows, but this is now one of my favorites. We watch the fountains until their last presentation and sleep our last night in Vegas. All too soon, it is back to reality and back to breast cancer.

On the shuttle from the airport back to the park and ride, I check my email etc. and found a message from the mother of one of my former students. Lucky for me, I have many of them on Facebook, and it's so great to read about them and their growing families. Many of my former students have become theatre teachers which gives me a real thrill. Anyway, I had reached out to this Mom when I was first diagnosed with breast cancer because I knew she was a survivor. She has been very encouraging on this road that no one wants to take. Her son is now a theatre teacher, and he and I have corresponded about some of his productions. He just recently directed a production of the classic play Harvey which it just so happens, back in the day, I had directed him in the role of Elwood P. Dowd. She sent me this picture taken from the program of his production.

It don't get much better than this.

 

Now finally to the visit I was really dreading – the oncologist. Because our tiling was put off till after Vegas, my husband had to stay home with the tilers, so I drove up to the appointment on my own. I first met with my lymphedema therapist who was quite happy to discover that not only did my arm not swell during the flights, but it actually was a bit smaller, plus I have full range of motion now. She doesn’t want to see me till the end of February (unless, of course, I have a problem.) 

 

I had a bit of time to wait till my oncology appointment, so I decided to grab some lunch at the food court. They have a very good “make it while you watch” stir fry, but to my surprise it had changed to pasta today. I got the half order trying to stay true to my healthy eating with lots of veggies, and it was really good. All the tables were taken, but a lady who was obviously undergoing chemotherapy was sitting by herself, so I asked if she minded if I sat there. After a moment or two, I asked her if she was going through chemo. She said no, she was now doing radiation. I asked if it was breast cancer, and she replied, “No, I have pancreatic cancer.” Wow, how my cancer pales in comparison to her. I don’t know the percentages, but based on my feeble knowledge, my cancer is like a hang nail compared to hers. It just shows to go you, that no matter how bad off you may think you are, there are lots of people that are much worse off. I never thought I’d be grateful for breast cancer, but right now, I am. 

 

Eventually I make my way up to the Hematology/Oncology area and check in. Sitting in the waiting room for oncology is a really strange feeling. I see a wide range of people around me in this waiting room. People in wheelchairs, bald people, people wearing masks to ward off air borne infections.  I am going to be one of these people. It’s a sobering thought. Suddenly cancer is way too real. 

 

They are really organized here. When you check in, you’re given a reminder disk like you get in a restaurant which lights up when they’re ready for you. Eventually, mine goes off, and the “yellow” door opens (All the doors are color coded.) A nice young woman does the triage, surprisingly, my blood pressure is normal which doesn’t go with how I’m feeling inside. Shortly thereafter, my first oncology Dr. appears.  He is a “fellow” to the “big boss” and is very charming. I love that he begins with “I was just looking at your chart . . .” remembering the first surgeon’s nurse with her ”Why are you here today?” 

 

He has two chemotherapy regimens which he explains to me, and then tells me which one they recommend and why. I’m happy because the one they are recommending is only 4 infusions every three weeks – shorter than the other one, and with slightly less lethal drugs. He begins to talk about starting the chemo this Friday, and I ask about the port placement.  He tells me they don’t have an opening to get a port done, so I’ll have to have it in my vein. I shake my head telling him, “You don’t know my veins.” We discuss that, and he says he’ll have the oncology doctor look at them when she comes in for the examination. I ask him about a chemo education class, but he says they don’t do that here since I will be meeting with the doctors every time I come in. 

 

The head oncologist comes in, looks at my arm, and she says, “We can wait to start chemo until after Christmas.” Music to my ears. That’s the good news; the bad news is that my port placement will be next week when my family is here for Christmas. But that’s OK. We’ll work through this. 

 

I’m so happy with the people here. Every single person (with the exception of Temp,) has been so great, and oncology is not any different. I get all their phone numbers, emails etc., am told to contact them with any questions, and then I meet the nurse manager who is just as terrific as the rest of them. 

 

I go out front and make all my appointments which are legion. Each time I come in, I go to the lab first, then the infusion, then the doctor. It takes a long time to juggle all the times. I am given three prescriptions to fill before the first chemo infusion, and I am done. 

 

So now, I’ll try to get as much done as I can before the port placement next Wednesday since I understand it is very fatiguing, I’ll enjoy my family when they are all here starting Saturday evening, and I’ll have a great Christmas. And I hope you do as well!