#9 November 15-22

Home is great, but dogs are better.

So I get home from the hospital, the dogs are really glad to see me, and the first thing I have to do is construct a boob barricade as Sydney, the five month old, seems to take one leap from the floor and land right on my left breast. Every. Single. Time.

I find that the shredded memory foam pillows we have in the guest room work really well for this.  I lay one on my chest, and even if the puppy stands on it, I can’t feel any pain. I just have to remember to build my barricade every time I sit down. I was thinking of flying a red flag from the top, but decided it was too much.

The older dog Scout wants to lie on my lap, but because of the boob barricade, she doesn’t have as much room as before, so she stands on my thighs while trying to decide what to do or worse, right on my kneecap! I keep straightening her legs saying, “Down, Down!” til she finally drops. Then she’ll hear something, jump off to investigate, return to my lap, and it’s deja vue all over again.

In spite of all of that, I love having my dogs around me. They are a calming force, soft, warm, full of love, and always good for a laugh.

Left side vs right side

My breast surgeon told me not to lift or really use my left arm, just some slow gentle stretches a couple of times a day.  That is much easier to type than to do. Left and right are used to working in tandem. Right reaches out for something, left starts to help. Right yells to left, “No man, you lost the toss; I’m the receiver.” Left drops in abject humiliation.

On the day after I returned from the hospital, I began to have a strange, heavy feeling in my left bicep, pins and needles etc. I get concerned, phone the Doc On Call and get reassured that this is normal. Are you kidding? Nothing going on with my body right now is normal. Now I have to deal with feeling that the whole inside of my upper arm is dead. On a positive note, the stress of waiting for the DOC helped my stool softener do its assigned work, and I’m now functioning on all cylinders.

The other left v. right problem is sleeping. I am a stomach and side sleeper. In my present predicament,  stomach is definitely out, and right is the only side. I remember sleeping in the recliner after my knee replacement, so I decide to try that again. I’m so tired, that going to sleep is not a problem, but waking about every two hours is. Still peeing in Technicolor although it’s getting lighter.   ♬ “It’s not easy peeing green.”

After the last potty trip, I try a different recliner. Yes, we have three recliners in our living room. Two are on the sofa, and are electric left over from my knees’ inability to push a recliner down. The other one is manual, but softer, so I move there for part of the night. I try soft recliner the second night, but by then my back is out of whack. I’m also having muscle pains from the medication they give you in surgery. I feel like I’ve been beaten with chains.

Third night, I go back to my own bed which normally is very comfortable. I manage to get myself into a position that feels good, turn on my Kindle (I usually read before I go to sleep,) but realize that I can’t turn over and put my Kindle to the night table without destroying my body position. No reading tonight.

I drift off to sleep. My left hip wakes me loudly screaming, “Hello, can we have some variety in positions here?” Nope, not going to happen. Can’t sleep on my back in the bed; therefore, right it is.

Because of only being able to use my right arm, it is very difficult to do normal everyday things such as putting on deodorant. What also doesn’t help is that my entire underarm is numb, so I can’t feel where it is put. I was told to get a roll-on or spray since a stick would pull too much. The spray reminds why I quit using spray eons ago. I have to get my husband to roll-on the deodorant for me. This is very humbling.

I also have this drain hanging down with yucky lymph fluid etc. dripping into it 24/7.  The drain must be emptied and measured, every so often, and I really would find it very difficult to do it myself since, I’m not supposed to use my left arm. Enter my wonderful and supportive husband. He faithfully “milks” the tube into the globe, dumps, measures, and I record the measurement for my doctor.

It’s not just with the drain that he helps. When you can’t really move one arm, there are a myriad number of things that are very difficult to accomplish.  Such as pulling up my pants. Covering myself with a blanket.  Putting on a shirt, even a button up one.

Now, let’s talk about taking a shower. I would venture a guess that most husbands and wives have, at some time in their marriage, showered together. It is sexy and romantic. What is neither sexy nor romantic is the kind of shower we have to take now.

In order to take a shower, my devoted husband must cover my drain with a special plastic bandage, so it won’t get wet. Then he helps me undress. Luckily we already had a shower chair and grab bars in our bathroom. I sit in the bath chair, and he sprays my hair and washes it for me. The running of the warm water down my back is wonderful. I want to sit all day in that relaxing feel. He washes my arms and back, and I can feel his love, at the same time I feel my inabilities.  As he was helping me once, I said, “I guess this is the ‘in sickness’ part.”

We have been married almost 47 years. I am no longer the 19 year old with the taut stomach and perky breasts. I am wrinkled and saggy, and right now, covered with steri-strips and bruises. He touches me with the same love he did 47 years ago.

Maybe I’m wrong about the romantic – but definitely not sexy.

Out, Out, Damn Spot

My surgeon told me she would probably have my pathology report the Thursday after my Friday surgery. I know they have their team meeting on Thursday, so figure I’ll get a call sometime in the afternoon. I make sure that my phone is with me at all times during the day. At supper, after not having heard anything, I say to my husband, “I guess they didn’t get the pathology report back. Maybe tomorrow.”

But I want that pathology report back, and I want it now! I need to know if I’m going to have to return to surgery because the margins weren’t clear. I want to know if more nodes than the one I already know about are full of nasty cancer. I want to know if there are any surprises.

It’s time to empty my drain. My husband handles the disgusting stuff with aplomb. I return to the living room, and pick up my phone. I hadn’t taken it with me, but I also had not heard it ring. But of course, the surgeon had called and left a voice mail. I message her back asking her to please call back as soon she can, and a very short time later, she does.

“It’s not all bad,” she begins, and my heart begins to race. OK, what’s the bad part?

 “You no longer have any cancer in your breast. The mass was about 2 cm. The margins were clear. ” Wonderful, I think, what’s the bad part?

“I took out 27 lymph nodes, and three were positive.” Hey, 3 out of 27 is pretty good odds. What’s the bad part?

“We discussed you in the team meeting today, and the oncologists want to meet with you before they set a regimen for chemotherapy.” She then begins to talk about possible regimens using abbreviations for the chemo drugs.  I only understand about half. What’s the bad part?

It turns out there really is no bad part, at least not one I didn’t already know about. I knew before surgery that I was going to have to have chemo. Maybe she forgot that we already knew I had a positive node. Many women do not discover this until surgery, so chemo can be a big shock.

She also said the radiologists want to use a newer therapy on me called

3-D Surface Imaging to Facilitate Deep-Inspiration Breath-Hold (DIBH): Patients receiving radiation for left-sided breast tumors while in the supine position (lying chest up) are at greater risk for radiation exposure to the heart. Women can minimize this risk by breathing deeply and briefly holding their breath during treatment, which moves the heart and lungs away from breast tissue. To make DIBH easier for the patient, our experts use a state-of-the-art system that relies on 3-D surface imaging to detect the breast's position for accurate treatment. This highly sensitive technology delivers radiation only during optimal positioning, and shuts off automatically when the patient coughs or exhales.  

This is why I am so happy about using the University of Chicago for my breast cancer. They have stuff like this.

So this has been my week. Learning to protect myself from loving dogs, learning to live without my left arm, learning to lean upon my husband.

Tomorrow is my post-op appointment, and I get some idea of the next level of torture – 

Chemotherapy!

#8 November 13-14

Surgery Day

After not very successful night trying to sleep, the alarm went off at 5 a.m. For those of us who have been retired for a while, 5 a.m. is not a viable hour. We prefer to believe that it no longer exists, and are most unhappy when given proof of its existence.

I had mostly packed my bag the night before, so it didn’t take long to get ready. Couldn’t have any coffee, but was able to take a couple of my normal daily pills. So glad I could take the Prilosec which was denied me when I had my knee surgery. Acid reflux contributed to most of the pain after that surgery.  Our son showed up to drive us to the hospital, and even though we got in some morning traffic, we still got to the hospital by 7 a.m. which is when I was supposed to check in.

I had my information sheet printed out by Temp, so was slightly (and with reason) concerned with it being correct, but presented myself at the specified location.  After a few minutes, I was called up, and told, of course, this was the wrong location, and we had to go upstairs. Score another one for Temp.

My first procedure was the wire location. Usually this is done on a mammogram machine, but for my tumor which is really deep, they decided to use the ultrasound. That was OK by me, since I wasn’t looking forward to being squished this early in the morning. Unfortunately, neither the tumor, nor the tumor marker wanted to show up on the ultrasound. There was a lot of heavy pressing, and at one point I said, “OK, false alarm, I can go home now.” Not so fast, they said, and finally found the little bugger.

They had to push a needle through to the tumor, then thread a wire in it which the surgeon would follow to the tumor. Well, of course, the needle didn’t want to go down there. The resident with the guidance of the radiologist manfully tried, but eventually the radiologist had to step in and get it situated correctly. Since this is a teaching hospital, I have no problem with having students learning on me, just sorry it was so tough on the resident. They had given me lidocaine for all this, so I was in no pain. 

After that, I did have to have a mammogram just to make sure the wire was where it needed to be, but the technician assured me that it would be gentle, and it was. Everyone was very nice, friendly and helpful, constantly inquiring if I was OK. When it was all over, they said I was such a good patient, maybe I could come back every day, but I said I thought I’d skip that part.

They wheeled me out to the surgery pre-op area picking up my entourage on the way. Not only were my husband and son in attendance, but also my daughter-in-law and her mother, who drove in from Detroit. My technician said having that many people show up for my surgery said something about the kind of person I was; I said no, it says something about the kind of persons they were.

We got to pre-op, I dressed in this enormous gown – could have gotten 2-3 people in there with me, and the moment of truth happened – IV time. Gosh, I dread these things. Luckily, she got it in first time. I was so happy.

Numerous people came by with clipboards, all of them asking the same questions, except the anesthesiologist, he had an IPad. They let my husband and son come back until time to head for the operating theater. I remember someone said, “We’re going to give you something to relax you on the trip to surgery.” That’s the last thing I remember, although one of my surgeon’s assistants said I was quite talkative. God knows what I said.

I went in for surgery at about 9:30 a.m., and I fully expected to be in my room by noonish. Imagine my surprise when they were waking me up in recovery, and I noticed the clock said 2:10 p.m. Evidently my blood pressure had spiked during surgery, and they were working to get it back down to normal levels. I vaguely remembered that this had happened during my knee surgery, but had totally forgotten it.  I guess I need to check on that.

They would only allow one person back, so my son came since my husband uses an electric cart, and the nurse said the space was a little tight. I was very dry mouthed, and my son was wonderfully handing me ice chips. He is also very funny, so we were doing a lot of laughing. They probably thought I was really hitting the pain meds. My son said the surgeon was very pleased with the surgery, felt the margins would be good, and they were able to bypass some nerve clusters.

They asked what I wanted for pain relief – I could have a shot or oral medication. The biggest pain I had was in my shoulder blade on my back, I knew the tumor was deep, but I didn’t think it was THAT deep. I chose the oral, but it didn’t touch the shoulder blade pain. I know I should have told them it was an “8.” . Brian Regan does know what he's talking about. They then gave me a shot, and a little later another shot, which finally took most of the edge off. “I got me some 8’s!”

They kept taking my BP, and gradually it began to drop. Eventually they said, I could be released to go to my room, only there was nobody available for transport. We kept laughing, talking, and eating ice chips. Finally about 5 p.m., transport arrived, a very personable young man who was saying hello to everyone we passed. My entourage joined in, and I was wheeled to a large private room for the observation period that I had to be there.

They gave me a menu, and told me to go ahead and order dinner, since it took about 45 min. to get there. Since I have been on Seattle Sutton for two weeks, the hamburger sounded really good - no make that a cheeseburger, and add grilled onions, mushrooms, and bacon! There was some mix-up having me in the system to get a meal, but it finally got sorted out. I sent my entourage home, and settled in for the evening.

I was able to ambulate right away, took care of the elimination necessities, and was most surprised to see royal blue pee.  ♬“Blue pee, smiling at me, nothing but blue pee, do I see.”♫ Sorry about that. Evidently this was from the reverse mapping procedure where they shoot dye into my arm to see which lymph nodes can be spared.

People kept coming in and doing things, but finally food arrived. I had had nothing since 6:30 p.m. the night before, and wouldn’t you know it . . . I wasn’t hungry. I made myself chew, swallow and repeat until most of the burger was gone. It really tasted just fine, particularly for hospital food, I just had no appetite.  However, the last time I had surgery, I didn’t eat much, and wound up with a low blood sugar reaction that was thought to be a heart attack.  See One Does Not Simply Walk into Mordor from my blog about knee replacement. I didn’t want that to happen again.

All I wanted to do was drink – not that kind of drinking – I was all over the ice tea that came with my meal, and a strawberry smoothie for dessert. When that was gone, I drank water running the poor aide crazy with refilling my pitcher. Sleep began to overtake me early, but for only about an hour at a time. I’d wake up and see the hour, call for my aide to get me to the bathroom (royal blue pee moving up the chromatic scale with each evacuation,) and go back to sleep. Next hour – rinse, repeat. At one point about 1:30 a.m., I was so wide awake, I just turned on the light and read for a while. At some point in the night, I changed over from the pain shot to the Tylenol 3 pills.

By morning, Pee had moved in the green spectrum, ♬”Once there was green pee, kissed by the . . .” No, I can’t go there.

For breakfast, I decided to really get some good stuff that I would want to eat, so ordered an omelet with Swiss cheese, mushroom, onions, tomatoes and bacon, whole wheat pancake, red grapes, and coffee. It sounds really good as I type it, and it probably was, but I only ate what I could force down.

My surgeon’s “fellow” came in with two in her entourage, and they removed the craft foam bandage which was really irritating me.  They also talked about how to empty my drain which others had been doing, but that I was going to have to deal with when I got home. Not hard to do, just yucky.

My nurse came in and said she was putting in for my discharge, so I called my husband to head on up. Since the IV was also removed I was able to move on my own, so I could brush my teeth, wash my face – oh the simple things that we miss so much when we can’t do them. With the craft foam gone, I thought I could probably get my sports bra on, so I gave that a shot.  It wasn't easy, but the "Zip, Zip Hooray Bra" (I am not making that up) was eventually placed without too much pain.  

I got dressed and laid back down on the bed to wait when my surgeon showed up.  She was surprised I was so ready to leave. She again reassured me that everything seemed to have gone well, and that she would call me Thursday when the pathology came back.

Just as she was finishing, my husband and son showed up. We finished up all the paperwork, and got the heck out of Dodge. I have to say that every single person I had contact with was exceptional, but truly, there is no place like home.

#7 November 9-12

My worst times are at night.

I wake up at 3 a.m. almost every night, the curtain is wide open, and the Man Behind It is pulling all the levers. Flame is shooting up the sides as the giant head speaks, “I am Cancer, the Great and Terrible” This is when the litany of things begins to roll through my mind; surgery, chemo, radiation -the horror of uncertainty. In the daylight, I can remain positive (for the most part,) but the night is a different animal altogether. No ruby slippers either.

 

Last night, I awakened at my traditional 3^rd hour, and I tried to turn over, but our puppy Sydney was so close to me, that I could not move her. We have a joke that Scout, her sister, becomes the 80 pound boneless dog when someone tries to move her to a different position on the bed. Sydney is only 5 months old, but she has already become the 40 pound boneless dog. Try as I would, I could not get her to relinquish the covers, so I half-covered myself with the blankets and sheet and finally managed to fall asleep.

When I do fall asleep at these odd hours of the morning, I find myself having difficulty dreams. I’m sure somebody has given these dreams a more technical title, but I find that I dream about problems I’m experiencing in odd ways. 

For example, many years ago I dropped out of college to marry and have children, always intending to return someday. I began to have dreams about the difficulties of being in school, but always I was in some class where I didn’t know the assignment, or didn’t have the correct book, or sometimes didn’t know where the class was. It was very similar to the actor’s nightmare where you are on stage but you don’t know your lines, the blocking, the play etc. I’ve had that one too. However, when I finally did go back to college, I quit having the school dreams.

Now my dreams are about difficulties of different types such as trying to get to a specific place and unable to find it or trying to communicate with someone but unable to express myself. They always differ, and even now, as I try to recall specifics of these dreams, all I can remember is the frustration. I can only hope that once all this is over, my dream patterns will change for the better. Either that, or the #&*$ dog will get off my covers!

It’s not all bad though. As I have said before, you have to look for the positives, and sometimes, you don’t have to look very far.

A few days ago, I got a card from my best friend in high school. Oh, how long ago that was! We were such typical silly teenage girls. We lost contact sometime in the late 60’s or early 70’s after we both married.  She saw my diagnosis on Facebook, and somehow found my address. It turns out that for several years, we actually lived within a mile and a half of each other and didn’t even know it. Now we have a way to connect.

Yesterday I also reconnected with a very old friend. Someone I have known practically my entire life, with whom I felt closer than a sister, and yet, somehow, we had lost touch. Today, because of this blog and Facebook, we got back together.

Our Mothers were best friends who lived on adjoining sides of a duplex when we were children. When I say I’ve known her practically all my life, I am not kidding. I have pictures of being at her 2^nd birthday party, and she’s a year older than I.

All our lives, the two of us had events happen to us that were very similar.  We both obsessed over Richard Chamberlain (Dr. Kildare on TV) when we were young teenagers. We stayed up all night one night reading movie magazines about him. We saw him in person, and she managed to touch him. I didn’t. I never forgave her for that.

We married at the same age, we were both pregnant with our first child at the same time, and our daughters’ birthdays wound up separated by 4 weeks. Our two daughters then became best friends throughout their childhood standing up for each other at their weddings.

Not surprisingly then, it turns out she had the identical breast cancer that I have (IDC, small, node involvement) only in 2004 – even the same side. Wish I could have been there for her as she is being here for me. We talked for a long time on the telephone, then have texted and emailed since then. As she is an 11 years survivor, it makes me feel much better. 

So maybe not all things about cancer are bad.

Tomorrow is the surgery.  I have made my list, packed my bag, and am preparing for the evening’s ritual cleansing before surgery. I have these packages of wipes – the ones Temp was going to email me. Think about that – take as long as you like. Not only do I have to follow very detailed instructions, but I have to place the package sticker on the instruction sheet, sign and date that I have done the ritual cleansing this evening and do the same thing again in the morning. They mean business on this pre-emptive infection stuff, and that is a good thing.

This time tomorrow surgery will be over.  The cancer will be cut out – at least most of it – preferably all of it. I’ll see what is left of my left breast, and find out how truly irritating the axillary node dissection is.

I’ll be back home Saturday, and depending on how I feel, eventually I’ll write another blog detailing all that went on.

Stay tuned, don’t touch that URL!