#6 November 1-8

Halloween

 We, (I say we, but I mean my husband – “royal we”) took down our Halloween decorations on Nov. 1st.  We had a record number of trick-or-treaters – 12! And that was in a cold, blustery rain for part of the scheduled time.

Two new things I’ve gotten used to here in Chicagoland. One is Halloween decorations. We never decorated for Halloween when I was a kid growing up in Texas. At the most, someone would put out a carved Jack O’Lantern. Up here, they can get as complex as Christmas decorations.  We hang up some pumpkin lights, have two “skelemingos”- my personal favorite, and this year we added some lighted “ghosts” along the walk. Not much, but way more than we did growing up. I have noticed this trend has started to move south.

The second thing is Trick-or-Treat hours. Our village has established them from 3 p.m. to 7 p.m. During that time, the police drive slowly through the neighborhoods with their lights going making sure everyone is safe.  They also stop and give candy to the kids as well. After 7 p.m., it’s over. I can remember getting my doorbell rung as late as 10 p.m. in Texas!

Pre-Op

I had the pre-op anesthesia clinic today. The only weird thing was when the triage nurse took my blood pressure, it registered 155/72! I’ve never had that high a top number in my life!  I asked her to redo it in the other arm, and it was a much more sedate 130/80. Still slightly high for me, but then one could say that I’ve been under a small bit of stress lately. The anesthesiologist was very good, asked the usual questions, checked me out, very professional. She gave me a written sheet of instructions for which medications to leave off before my surgery etc.

After the clinic, I decided to visit Temp to retrieve the packet of information that she was supposed to email me, but had not. I did not call ahead, but just asked for Temp at the front desk.  I waited a bit, then she came and took me to her office. I told her I was trying to save her a step by picking up the info for my surgery instead of her emailing it. She began to rummage around her overflowing desk, and finally said, “Why don’t you go back to the waiting room, and I’ll come get you when I have it ready.” I did so, and eventually she came and got me.

The first thing she gave me were two packets of wipes which I must use the night before and day of surgery. I remember doing something similar when I had my knee replaced as all medical institutions are trying to be proactive about things such as staph and MERSA infections.  I did wonder; however, how she was going to email me those if I hadn’t stopped by.

Then she gave me a two page sheet of instructions on which she had obviously just filled in some blanks. I just looked at the times, but didn’t completely read the handout until I got home. Wouldn’t you know it, she had me in ambulatory surgery going home after about an hour in recovery. I knew that I had already confirmed with my Dr. that I would be staying overnight, so I sent an email to my surgeon asking once again if I would be an overnight visitor. Yes, I am.

Temp strikes again.

Support Staff

The pre-op instructions state that I need to bring a sports bra (no more lifting and separating, but smashing and mashing) to wear 24/7 until my post-op appointment on the 23^rd. I did some research on this, and discovered two things, (1) I need a front opener because my left side will not be cooperating as well after surgery making it a bit harder to do the gymnastics required to put on a regular bra. (2) It’s hard to find a front opening sports bra in my cup size – DD.

I looked around in stores, didn’t find anything, even put a call out on the breastcancer.org forum for brand ideas, but finally resorted to trusty Amazon. There I found something that had reviews all over the map, but I decided to order it and try one out. The major complaint was the front zipper either broke or rolled down allowing the “girls” to escape at inconvenient times.  So far, I have stayed zipped without a causing a riot or getting arrested, so I’ll order some more.

Meals on Wheels

When I knew I was going to have my knee replaced a couple of years ago, I began freezing meals far in advance, so my husband was able to just heat up things that I knew were going to taste good. This whole breast cancer thing seemed to happen so suddenly, I wasn’t really prepared at all.

I know I’ll not be feeling the cooking gene for a couple of weeks after surgery, but what I’m really concerned about are the months of chemo and radiation. My husband is a Type I diabetic, and he needs to eat healthy. I could stand that myself as the pounds have piled on with the years.

I decided to check out Seattle Sutton’s Healthy Eating. They have a distributor about a mile away, so we could pick up the meals without delivery charges. They provide three meals a day which are nutritionally balanced and calorie limited. We decided to buy ½ week of their 1200 calorie menu to check them out and see if it would work. 

Mind you, these are not inexpensive. Yes, I could cook diet meals for a lot less than this. Of course, I haven’t, but that’s beside the point. My husband is not going to cook well balanced meals either, and I know we’ll resort to pizza delivery or running down to Culver’s for a butterburger – definitely not nutritionally sound.

Lo and behold, we actually like them. Because they are for varying diets, they lack a little in seasoning, so we have to add salt and pepper occasionally, but they have a rotating 5 weeks of 21 meals per week, so you don’t get tired of the same old thing very quickly.  Some of them have been quite tasty, some less so, but none have been in the “throw this out, I can’t eat it” category. We also have a lot of fresh fruit and veggies without any wastage.

We bought a full week, and then another, and then, wouldn’t you know it, our distributor is going out of business. No more 5 minute trips to pick up the meals.  We have found a distributor about 20 minutes away, which is not bad when you consider that we have to do no other grocery shopping.  The only thing we add are beverages – milk, coffee and whatever other low calorie drink we want.

After the first week, I can say that I never felt “hunger.” I did get the munchies, but tried to do something to keep it out of my mind. We both lost weight – 2.8 lbs for me and 4.8 for my husband. I actually feel much better knowing that I’ve been eating healthy, and we’ll continue this for a while. 

But not when I go to Vegas!

Limbo

I got a nice surprise in the mail a few days ago. One of my good friends had her church mail me a lap quilt with Bible verses on it. There were knots tied for the quilting, and each knot was a prayer for me. I get a bit more weepy now than I used to do, and that was definitely hanky time for me.

The hardest thing has been the waiting. I try to keep busy, but as the date for surgery gets closer, I find it’s harder to keep off my mind.

Will my surgeon get enough tissue to have clean margins-areas with no cancer? (I’m betting she does. She’s really good at this, which is why I picked her.)

So much is riding on the pathology report after surgery. Will there be any surprises?

When does chemo start? How will I feel? Will my hair fall out? When will it fall out?

The questions keep coming. 

Four more days of limbo.

#5 October 25-31

Oct. 25-31

The Continuing Adventures of Life with Temp.

This has been a very frustrating week.  After feeling such a high over picking my surgeon, I have since been in the Twilight Zone of information.  I have a very strong feeling Rod Serling is standing off to one side saying, “Suzanne thinks everything is settled now for her breast cancer, but she doesn’t know she has entered The Twilight Zone.”

After making the tentative surgery date for Nov. 5^th, I waited to hear about the pre-op anesthesia clinic.  On Monday Oct. 26^th, I emailed my surgeon that since I was going to the Naval Hospital on Tuesday as my husband had some appointments, I could pick up the CT Scan that was done in 2012 if no one had already sent for it.  They needed this to compare to my recent CT scan since there was a question about a nodule on my lung. She emailed back that it would be a good idea for me to pick it up, since she didn’t know if it had been addressed.She also CC'd several people at the breast center about this.

Tuesday, I picked up the CD with the scan and replied to all that I had it, and should I bring it with me when I attend the pre-op anesthesia clinic. My surgeon responded and said to give it to Temp who would submit it. Then I waited to hear from Temp or anyone else. Nothing.

Wednesday, I call and speak to the secretary who transfers me to Temp. I tell her that I haven’t heard anything.  She says she’ll get back with me.

Thursday, I get a call from someone new (cc’d on the email from my surgeon) who asks me if I have the CT scan CD. I tell her that I do, and she wants me to bring it down to them. Evidently, the “team” met, discussed my case, and wanted to see the CD. She asks me if I can bring it Friday, and did I sign a form releasing this to be read by another radiologist.  I say no, I didn’t sign any form, but I’ll bring the CD in today - anything to get something going.

We pop in the car, and I get to the breast center, and hope everyone isn’t out for lunch since it’s right at lunchtime.  Luckily (?) Temp is in.

She grasps the CD and says, “This is what they’ve been waiting for.”  I tell her that I’ve had it since Tuesday, and could have brought it down then, or Wednesday or even earlier this morning if someone had just asked me to bring it. Then Temp tells me that the surgery date that had been tentative is still only penciled in, and they can’t schedule me for the pre-op anesthesia until they get a hard surgery date. She dismisses me, and I ask her, “Isn’t there a form I’m supposed to sign?”

Of course, she doesn’t have that form, and we must go to the front desk, where the girl there rummages around until she finds one. I sign it, and then we go back to Temp’s office. Her desk is littered with papers. She asks me if I have an email address, and she wants to write down my email address, but she can’t find a post it note. Meanwhile, I notice the envelope with the CD and the release form are not even together on her Fibber McGee desk, so I put them together, find the post it notes, and give her my email address. 

I tell her that I am ready to get this show on the road, and that we need to get that pre-op clinic and surgery scheduled as soon as possible.  She tells me that if she hasn’t called me by 1 p.m., on Friday, that I should call her.  I tell her, “don’t worry, I will.”

Friday, about 11:30, she calls to tell me the pre-op is Monday, and my surgery is Nov. 13^th.  I thought I was penciled in for Nov. 5^th! Nov. 13^th and of course, it's a Friday! Did Rod Serling just disappear around the corner?

Oh, well, at least it’s now on the schedule for good. She double checks my email address, and I ask her to email me all this information, and she says she will. Friday, 7 p.m. – no email yet.

If I didn’t feel so strongly about this surgeon, and their program and knowing Temp is temporary, this kind of thing would definitely send me back to the first place who diagnosed my breast cancer.

How the Mind Really Works

During the day, I have found the best way to deal with having cancer is to busy myself with various things – household chores, reading, TV, video games – and to pay no attention to the Man Behind the Curtain.  I just try to keep the curtain closed. That doesn’t mean that I’m pretending it doesn’t exist; I just compartmentalize. When it’s time to deal with BC, I open the curtain a small amount, deal with it, then I move on.

  

At night; however, I find that I wake frequently only to have the curtain wide open with all the doubts, fears, and worries rushing past like a slide show. What if . . .? What about . . .? Will I . . .? Sometimes it is very hard to close the curtain. As a result, my sleep patterns are all screwed up. Will I ever get a full night’s sleep again?

Miscellany

I looked at my wedding ring, and I realized that not only had I not removed it in many years, but also, it looked much too small for my finger.  With the worry of lymphemdema present in my mind, I realized that I needed to take steps. 

I soaped my hand thoroughly - no go, rings sticks just below the knuckle.  I tried hand cream, same difference. I turned to trusty Google, and lo and behold, a method for removing a stuck ring using string.

It seemed to make sense, so I thought I’d give it a try.  Anything would be better than having to have it cut off because my hand had swollen to twice its size.  I have some crochet cotton, so I followed the instructions and pushed the string under my ring leaving a long tail, then began to meticulously wind the string one thread at a time around my finger above the ring. 

Of course, my finger began to turn blue as the circulation was removed, so I quickly finished the thread winding, and took the tail that had been pushed under my ring and began to unwind in that direction.  It works! The ring begins to microscopically slip up my finger, one row of crochet cotton at a time.

What Google didn’t say is, that as it hits the tightest part of the finger, it begins to hurt quite a lot.  I kept unwinding expecting to see the string turn pink and then red (at which point, I would have quit,) but the string did not change colors, and eventually (quite quickly actually) the ring moved above my knuckle and slipped off. 

My ring finger began to pink up immediately, and although it was swollen, red and tender the rest of that day, by the next, all of that had disappeared. Now I just have an indentation where my ring used to be, and a very funny feeling because it’s no longer there.  Once I get through surgery and healing, I will have my ring resized, hopefully in time for my 47^th wedding anniversary.

#4 October 22-24

Red letter day today.  I have a surgeon appointment at 8 a.m. with the breast center that diagnosed my cancer, and a surgeon appointment at 1 p.m. with my choice for a second opinion.  And the race is on . . . who will win the insurance dollars for breast cancer treatment?

At 8 a.m., I present myself at the local breast center, complete with my list of questions for the surgeon. As usual I am triaged by a nurse who surprisingly asks me “Why are you here?”  Funny, I thought maybe she might have read my chart ahead of time, so she could know why I am there.  I tell her that I have breast cancer, and we go through the normal questions.  I ask if they have the results of the bone and CT scan.  She says they do, and the doctor will get them.

  

I disrobe, and wait for the surgeon.  She eventually comes in, introduces herself, does an exam, and says the two scans are negative except for some tiny nodules in the lungs which they do not believe are cancer.  I tell her that I had a chest xray a couple of years ago which had showed some suspicious areas in my lungs, so my PCP had ordered a CT scan which laid those suspicions to rest. 

The surgeon had talked with the oncologist, and they want to begin with chemotherapy rather than surgery.  I know that this is sometimes done, so I am not surprised; however, she does not explain why this would be better. She doesn’t go into details about the surgery or node involvement or when the surgery would take place.

 I do tell her that I am getting a second opinion this afternoon.  She asks where, and I tell her. It’s my understanding that she has ties with the university based medical center I am going to. She does not mention it. She never asks me if I have any questions, and before I can even say anything about my questions, she is gone. I actually thought she was going to return, but she did not. The nurse then makes a tentative appointment for a port to be installed in about two weeks, so I can begin the chemo.

We are out of there by 8:45.

I felt like so much was left unsaid. Here I am trying to make a decision concerning with whom I am about to trust my life.  I needed more, and I did not get it. This appointment did not get a very high grade.

My second opinion is at the highly rated university based medical center.  It’s about 20 miles further away, albeit in some higher traffic than my local center. They offer a free valet parking pass for the first visit, so we go early enough to find it, and stop to eat lunch at their food court.

The medical center itself is a very big and busy place, but my appointment is at one specialty building. When I go to the front desk with my letter, they immediately have papers on me, and page someone to escort me to the breast center. After the usual niceties of corroborating medical insurance, I am called by a triage nurse who reads and copies off my medical info (I had been given a questionnaire to fill out before coming) into the computer. 

My husband and I are escorted into an examining room, and after a very short time, someone who identifies herself, but whose title I can’t remember, begins to go over my diagnosis with me.  She is quite familiar with it. This is already a huge step up from the morning’s appointment. She is very knowledgeable and friendly, asking not just about my health, but also personal questions about who I am. I tell her that I have just had a bone and CT scan and have copies of the results.  She asks, “Who did that?” and I tell her the center where I was diagnosed. She says, “We wouldn’t have done that, too much radiation.” 

She tells me the doctor will be in soon, and when she leaves, my husband tells me he already thinks that “There’s nowhere like this place, anywhere near this place, so this must be the place.”  I agree with him, but try to keep an open mind since I haven’t met the doctor yet.

We do wait a bit of time before the doctor comes in, but no longer than I have waited for doctors before. When she comes in, after the general courtesies, the first thing she asks me before the exam is “What is your favorite play to direct?”(I had told the former young woman that I was a retired theatre teacher.) I love this! I expected her to be familiar with my chart, but she had already discussed with the nurse, resident, intern(?) some of my personal information. What a great way to connect.

After the exam, she sits down with a piece of paper, and begins to chart out all the possibilities for treatment with my particular cancer. Although this is a second opinion appointment, she tells me she always talks as if I am her patient. We discuss surgery for my breast, my lymph nodes, types of chemotherapy, radiation – everything. She gives me the pros and cons of surgery first, then chemo, rads, hormone and also chemo first, then surgery, rads, hormone.  She tells me that I’m a little harder to deal with because I have more options that someone who is “triple negative” or hormone receptor negative.  She does not push me in either direction. 

At this point, I know this is my doctor, and I tell her that I have made my decision to have my treatment with her.

I tell her that I can see both sides, but don’t feel that I have the expertise to make the final decision, although I’m leaning toward surgery first, since she explained that path might leave me open for less lethal chemo drugs. The chemo first route might lessen the tumor size, even in a small percentage of cancers, eliminate it, but stronger drugs would be used.  I know about the long term effects of chemo, so it seems that the less lethal drugs would be better in the long run.

Ordinarily, had I been diagnosed here, my case would have been brought up before the “team” at their weekly meeting, and she would already have had the oncologist’s opinion. However, since I was there on her first day back from a trip to South America, the team meeting would not be until the next week. She suggests that she bring it up with the medical oncologist on the team and get their input.  She gives me her email address, so I can contact her with any concerns.

The rest of the nursing team gets right on requesting my records from my previous CT scan so the lung nodules can be completely ruled out.

Wow, what a difference from the morning.  I’m sure they are perfectly competent at the first place, but the amount of confidence I feel right now is overwhelming.  I am the least stressed right now since this whole dance began.

The next morning, I hear from my new surgeon that she has discussed my case with the oncologist, and she strongly feels surgery first is the best option.  I’m told to get in touch with my surgeon’s temporary secretary and schedule the date for “a left complete axillary node dissection with axillary reverse mapping and left breast wire-localized partial mastectomy.”

What this means is (1) I have at least one lymph node that is positive for cancer, so many, but not necessarily all of them are going to have to come out-some drain from the breast, some from the arm, but we don’t know which is which (2) when all the lymph nodes come out, there is a possibility of lymphedema which can cause the entire arm to swell.  This is incurable because once lymph nodes are gone, they’re gone. (3) by injecting a blue dye into my arm, they can map which lymph nodes drain from my arm and not remove those; thereby, increasing the possibility that I won’t get lymphedema and (4) since the cancer cannot be felt, a needle (or wire) localization with numbing medication will be done by a radiologist prior to the surgery to help guide the surgeon directly to the cancer. Occasionally several wires may need to be placed to “bracket” an entire area of concern for excision.  Ain’t Science grand?

I contact the “temporary” secretary to discuss scheduling and discovered the weak link in the process. We do eventually come up with a date, but it’s a tortuous process rife with inaccuracies. Hopefully, the regular secretary is only out for a short while.

For example, Temp said it was an outpatient surgery, while I had read that if the axillary node was dissected, that equated to an overnight. I let that one slide, and asked Temp if the surgeon would also install my “port” (for chemo) at the same time of the surgery.  She said she’d check, and asked somebody else who told Temp they didn’t think I was going to need chemo. I told Temp that possibility had never been open to discussion (the original place was going to start with chemo!) but let that slide as well.

Since I have my surgeon’s email, I put those questions to her, and got a prompt response. I will be staying overnight, and I will have to have chemo (Dang!) I won’t actually meet with my oncologist until after surgery, so did not ask about the port.

I did find out that chemo usually starts 5-6 weeks after surgery, so our 47^th Anniversary trip to Las Vegas is safe! I will be healed from the surgery, and not yet on chemo. Let the bacchanalia begin! At least on Dec. 7-10^th!

So here I am – twelve days out from changing my body as I know it.  The only appointment that I will have to make is with the pre-op anesthesia clinic. I’m going to try to catch up on all the household things that I have been putting off. I am going to eat healthily – more about that in a later blog. I will do more reading, and make more check lists to prepare myself for after surgery, chemo and radiation.

I am going to enjoy myself.