#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.

#3 October 11-21

October 11-21

I am trying not to allow my life to be consumed by breast cancer.  We have planned for many months to fly to Texas to visit my daughter’s family.  My son-in-law is a band director, and this year, my granddaughter who plays the French Horn divinely, is playing a solo in the fall marching show.  I alternate between packing for the trip, writing instructions for the house/pet sitter, and obsessing over breast cancer.  I try to make the latter the smallest portion of my time; however, when you’re diagnosed in Breast Cancer Awareness Month, do you have any idea how many commercials, TV shows, news stories etc. are about breast cancer?  It’s impossible to avoid.

On the 14^th, the day before our Texas trip, I have an appointment with the oncologist at my local breast center. I have done my due diligence and come up with a list of questions gleaned from experienced sisters at breastcancer.org.  I have my husband come into the room for this appointment, since I think four pairs of ears are better than two, even if his two have to be assisted with his hearing aids.

The first Doctor is actually a “fellow” with the oncologist, but a very pleasant and knowledgeable young man. We go through the usual history questions, and I surprise him by using a term gleaned from my reading – Neoadjuvant - which is basically chemotherapy, radiation, or hormone therapy given before surgery.

At that point, I think I detect a slight change in his professional attitude, not that he was condescending at all, but he took me just a little more seriously. Later when we got to my questions, and I asked about the HER2 test being “IHC” and were the “FISH” results in, he looked at my husband, and said, “She does know what she’s talking about.” Then when I used the analogy of my lymph glands being the garbage cans for the breast, and needing to check and see if the garbage cans had overflowed, he said, “Great analogy. I wish my students knew as much.”

So my “hard work ain’t been in vain for nothing,” as Lena Lamont says. A little knowledge may be a dangerous thing, but putting your life in the hands of people you don’t know without knowing some of what they know is much more dangerous.

He tells me a lumpectomy is probably the route I want to take in surgery, but of course, that will be decided by me and the surgeon.  Today a lumpectomy with radiation and chemo has the same survival rate as a mastectomy, and it’s a much easier surgery to recover from.  He also tells me that my cancer is Stage II, which I had already figured out, but that my PCP told me I wouldn’t know until after the surgery.  (I’m really thinking about changing my PCP.) Unfortunately, he confirms that chemotherapy will be in my future thanks to the lymph node involvement.

The oncologist comes in, and is also very nice etc. They do an examination, and afterward, he discusses having me set up for blood work, a bone scan and a CT scan before I meet with the surgeon.

I’m able to get the blood work in that day, but because of our trip, the scans must wait until we return. I pick up the two bottles of barium that I have to drink before the CT scan and stash them in the frig. I’m not thinking about that til I get back.

We have a wonderful young lady coming to house/pet sit for us while we are gone.  Our two cocker spaniels are extremely important to us, and putting them in a kennel just didn’t seem right. Fortunately, I remembered this young woman whom we met while working on the local community theatre production of “Hairspray.”  She’s in college, and is a good, solid kid. I feel much better leaving our “babies” knowing she’s there.

We head for the airport, park at a park/ride/fly place, and wouldn’t you know it, the road to the Southwest Airlines ticketing is practically paved with pink ribbons. No avoiding it.  As we check in at the counter, I notice the ticketing agent has a pink ribbon pinned to her uniform.  I ask her if she’s a survivor, and she replies she is, for fourteen years.  She asks me if I am, and I reply, “I intend to be. I’ve just been diagnosed.” She immediately began to surround me with good advice, good hopes and then took the pink ribbon off her uniform and pinned it on my shirt. What a lovely lady!

I took breast cancer off the menu then, and concentrated on enjoying the visit with my daughter’s family. Although my daughter knows, and she told her husband, we did not want to tell the grandchildren yet.  We had a wonderful visit, and on the last evening, I gathered my granddaughter and grandson together with my daughter and told them what was going on. Luckily (in a way,) they understand about cancer more than most young people might as their father had gone through testicular cancer back in 2009.  They are coming to visit us at Christmas, and I told them that I might lose my hair like their Daddy, so to be prepared.  They took it with hugs and love.

We were glad to be back home and see our dogs.  Our wonderful sitter had kept them happy while we were gone. Now I have no excuse but to think a lot about what my body is going through as the next three days are full of Dr.’s visits and scans.

First up is the bone scan.  When I picked up the barium for my CT scan, the person told me that I had to go to another building for the bone scan.  I dutifully arrived at that building 15 minutes early, and asked the volunteer if this was where I got my bone scan. She looked surprised as if she had never heard that request before, took my name, and said someone would call me. I waited, no one called, asked the volunteer again, “Is this the right place, because if it isn’t, I need to find the right place.” She told me to sit down, and she would find out, so I did, but nothing happened.  Time is marching on, so I catch her eye, and look at my watch.  She grabs someone, they call me, someone else calls me, there’s a brief skirmish over who gets to take my vitals. Then I find out, this is NOT the place for the bone scan.

Eventually, the volunteer escorts me to the correct place for the bone scan.  I didn’t realize until then that I had to have an injection in my vein.  I have very bad veins. If I know I’m going to have to have an IV, I try to drink a lot of water to help the veins appear.  I didn’t do that before this appointment.  She tried one arm, didn’t work, tried the other, gets a different size needle, goes back to the first – eventually she’s able to tap in and get the injection offloaded.  I then have to come back about 3 hours later for the actual scan which takes approximately 45 minutes.  It goes well – no pain, and hopefully no gain.  Breast cancer metastasizes into bone, liver and lungs which is the reason for these scans. We know at least one of my lymph glands has filled up with garbage; the question is whether it has overflowed.

My husband takes me out to lunch at a local restaurant that we love, and I have the best chicken/wild rice soup I have ever had.  It’s almost like a risotto, and has a hint of tarragon.  We like it so much, we get some take home to have for supper.

Finally, the time has come, and I must get the barium out of the frig.  I remember how awful the stuff was when I had a colonoscopy.  I was hoping this wouldn’t be as bad. It wasn’t, but it wasn’t good either. I decided to put on an “I Love Lucy” DVD while I was drinking, so I could laugh through it.   It was the episode where Ricky thinks he’s losing his hair – great bits, but it should have been “Vitameatavegamin” –“It’s so tasty, too!” I made it through the barium.  And gee, when I get up in the morning, I get to drink the other bottle!

During the night, the barium decided that it no longer wished to inhabit my body, and it wanted to leave RIGHT NOW! It took several “right nows,” for it to remove itself, then it was time to get up and drink some more. I was more than a little wonky when I got to the CT scan place.  Then I found out that not only did I have to have the barium inside me, but also another injection! The hits just keep on coming.  Luckily, this technician was able to get the vein fairly quickly. CT scan is fast, and I’m home and can finally have breakfast and a cup of coffee.

Of course the second dose of barium is also not happy, and wants to decamp like the first, so I don’t go too far away from that “little room” as a good friend of ours used to say.

The rest of my day is preparing for the visits with two surgeons at two different hospitals.  By the end of tomorrow, I hope I will know where I am going to have my treatment, and what it is going to be.

As I put the word out today to friends on Facebook, I have been surrounded with well wishers and love. It reminds me of the last thing my oncologist said, “You’re going to be just fine. You’re in here laughing and talking, and you have such a good attitude.  Studies have shown that a positive attitude helps.”

 I will continue to smile even if I have to jam a coat hanger in my mouth.