Category: Events

2 days after the “portectomy” the incision is itchy, but not painful.  Oh, I was at a party yesterday and saw a friend who is very exhuberant in his story telling and when he clapped me on the back of my shoulder, it smarted a bit…but it’s not really painful.  Tender, maybe.

It’s interesting to me that no one really could tell me what the procedure entailed…the preregistration caller the night before said “oh, look at that, it looks like you can even have breakfast before you come!”  Usually he has to tell people to be sure not to eat anything 8 hours before the procedure is scheduled.  He could not tell me anything else.  Even the person who greeted me at the ambulatory surgery department didn’t really know.  “I know it has to be sterile going in, but don’t know about when it comes out…”

Well, the prep was really very much like the two/three other procedures I had under Dr. Surgeon’s care. The only major difference was that I had local anesthesia rather than general.  Here’s how it went:

Vitals, hang out in a room with a nurse asking me questions to update my record, put on a lovely johnny and sit and wait for my place in the surgery line.  Fortunately it was early and surgeries were going off without issue.  Dr. Surgeon came in to put her initials on my port side and check in.  She was so happy.  It was a day to celebrate with two port removals and NO port implants or whatever they call it when they put the port in.  I just practiced some new breathing techniques given to me by my accupuncturist while I waited.

I got to walk to the operating room and put myself up on the table.  It’s cold in operating rooms, if you didn’t know.  SO when the area was getting washed and then slathered with alcohol, it was a bit chilly, but the heated blankies really do add a degree of coziness to a sterile and cold environment.  I really wanted to see what they were doing, but had to turn my head to the left for the whole procedure, darn it anyway.  The most painful part of the experience was getting the anesthesia shots all around where the port was.  Dr. Surgeon said “I am apologizing now because this is really going to sting a lot.”   Boy howdy, she wasn’t kidding at all.  It brought me back to the time before the mastectomy where they shot dye into my nipple to find the sentinal node.  Fortunately it numbed up quickly.  In fact, she had already made the incision before I knew it.  Dr. Surgeon and Nurses-with-the-Cool-Hats and I spoke about dogs and cats and halloween costumes the whole time.  Dr. Surgeon’s favorite costume which she saw last year was someone with cereal boxes hanging all over him.  The boxes each had a knife handle sticking out.  Yea, he was a “cereal” killer.  I told E about this and he said if he dressed as one he’d just go out as a spoon.  I like his subtle approach, I think.

Anyway, there was one other time that I felt something and I suspect it was when she was pulling the port out.  I asked to see it. It was just a small plastic device, like the shape of a Rolo if you know what that is.  It has a soft center in the middle where the needles all went in.  It is white and has a very thin tube about 6 or 7 inches attached.  This is what was inserted into my vein.  Really a very simple device, and quite ingenious in my opinion.  I am so glad it was used in my treatment.  I didn’t like having something so obvious under my skin, but I’d strongly recommend that others consider it if there are to be multiple infusions and blood draws. 

I walked out of the OR, and they’d put a recliner in the recovery area for me.  It took longer for the paperwork to be gathered than for the surgery.  I signed myself out and left with instructions to take Tylenol in an hour or so.  It’s interesting to me that it was like an order to take pain reliever rather than “if you are too uncomfortable” take some Tylenol.  I won’t get on the soap box about the culture of zero tolerance for pain…I’ll just say that it has not been so uncomfortable that I’ve even thought about taking anything.  Just tender…oh, and when a kat or two climbs on it, it has caused me to yelp.  At this point it’s just like any other wound that requires stitches.  Have I said before that seri strips are amazing?

So there you have it.  After returning to our hometown, I met the kids at the grocery store to stock up for the annual Halloween sleepover that A  has with 6-8 of her buddies, which occurred last night.  In fact, 4 of them are still here and are just jawboning upstairs, undoubtedly all snuggled up together. 

At this end of things, I must say I really have been thinking about all the attention we and I were given throughout this past year.  I am very aware of how much effort it takes to be as present as you all have been to me and us.  Whether you kept up with this blog, provided food, rides or whatever to our family, prayed for us… I am in awe of what it takes to be so present for someone else.  As I move forward and try to be attentive to others in my life, on top of working and being a partner, mom, daughter, sister…I really don’t know how you all found the time to be so there for us. 

I guess the next thing I will be writing about are the results of the genetic testing.  Unless I get a brainy idea before then!

It was a wonderful gathering of so many people, this, our 2nd year at the Walk For Hope.  The day before was terribly windy and rainy all day long.  We were fortunate to have remained almost completely dry, and once we got walking I believe most of us kept our body temps up.  You can see the design of our shirts that A and a couple friends worked on.  We had such a great turn out, and a record number of younger walkers!  Our team was among the 10 teams with the most members, I’m so happy to say!  There was a terrific reaction to the “Save Second Base” image.  The ambulance driver actually wanted to take our picture and ended up buying some of the extra shirts from us.

The back of the shirts have a pink ribbon and a quote from Nikolai Lenon , which our friend C found for us.  “The most important thing in illness is never to lose hope.”  This was such a great addition to the shirt design.

Thanks to those of you who walked with me, to those who were with us in spirit, to those whose contributions will help the Walk achieve its goal.  It really was so much fun.

By the way, our camping trip was excellent.  We canoed for miles, sometimes with great winds at our teeth, some challenging waters.  We slept outside under an incredible canopy of stars.  We sat around the fire, ate hearty camp foods, hiked, watched the sun rise and set from our south facing island.  It was wonderful to have energy and to feel able to keep up with the others.  It was wonderful to be outside and be one with nature.

On October 29th I am scheduled to have the port-a-cath removed.  I will have local anesthesia.  Dr. Surgeon will do her handiwork, which I am thrilled about.  Then I can cancel all the rest of my monthly port flush appointments!  I am purging some of the books I acquired when I first was diagnosed, going through the piles and bags of paper and pamphlets and appointment lists and insurance benefits info.

I have heard from the insurance company that they will pay for the genetic testing, so I may pursue that as I close this chapter.

Short story:  Blood work is excellent.  CT scan looks as normal as can be. Breast and scar exam uneventful.

Longer story: I got home from today’s workshop and as I walked onto the porch, I was struck by the sugar maple tree.  It’s starting the transformation and I am tinkling with anticipation.  It becomes the reddest tree in view on our property.  It is the tree that I saw from my bed  this time last year during all the kat naps I was taking.  It was my reminder about the change in seasons and the beauty that surrounds our home.

So I’ll be the first to say that maybe my mind was not tormented by thoughts and what ifs before the CT scan results came in, but apparently something inside of me was.  Oh, my digestion was fine.  I lost no sleep.  My nerves seemed fine.  Blood pressure the usual low range.  There was, however,  something else that I noticed was lifted once Dr. Oncologist told me that the CT scan looked “beautiful”.  We are planning a 3 day canoe to the campsite weekend this weekend.  At the beginning of the week I was sort of saying things to myself like “why did I commit to do this, I would rather be home…have other things….” You know.  I was dealing with the common trepedation I experience when I commit myself to do something that requires something out of the ordinary. 

By the way, digital CT scans are so cool.  Dr. O rolled her finger over that thing on the mouse as we looked at my guts in black, white, tones of gray.  One thing sort of rolled into the next, the mastectomy, my esophagus, my lungs, my liver, kidneys.  That adrenal lesion that we saw on the very first CT scan.  It’s still 3mm, unchanged, benign, fairly common.  We will keep tabs on it because if it grows to 5mm, it will be recommended to me to have it removed so it doesn’t take up room and so we can forget it ever existed.  BUT for now, it’s going along for the ride that is my life. 

As I left the cancer center, I was looking at the crystal blue autumn sky, beautiful colors lining the roads, and was thinking about the smell of the campsite, the crackle of the campfires that I’ll be sure to get up early enough to start and stay awake late enough to be the last one staring into the embers.  I love rustic camping, love being outdoors, and now that I hear that it’s supposed to be something like 50 degrees and sunny, I can’t wait to get on the water.  The fact that I have tomorrow OFF to prepare makes it all double plus good.

When I was driving today I thought about the calls I made to my family when I went to Arizona after initially receiving the breast cancer diagnosis.  At the time, I was so intrigued that they were all available when I needed them.  I don’t think I left one voicemail. The same thing happened today when I called each of them to report the good news.  The greater good took care of making that happen again as the circle closes.

Oh yea.  I remember this.  Sitting around for an hour and a half sipping on a fairly sweet concoction that has been slipped into my 1 quart Poland Spring water bottle.  They’ve changed the time from 1 hour drinking to 1- 1/2 hours because it gives the contrast more time and this apparently makes better images.  I’m all for that.  Fortunately I remembered my computer and could really use the chill out time after a busy several days.  I’m particularly chilly of late, and the warm blankie is a nice touch.   Too bad I had to leave the cluster of katz at home.

The familiarity of this experience has an eery feel to me.  I have not thought about the stuff one thinks about when sitting waiting for a scan or a test, for a long time.  My response when someone has recently asked how I feel about getting this particular scan has been something like “One foot in front of the other.”  I don’t know what to think?  I’m not much for making up terrible scenarios to worry about, so I guess it is what it is.

I’ve found out that 4 of the women-in-the-know who have been my guides are all on a similar scan schedule.  It seems to be sort of like the way women get on the same menstrual cycles if they spend enough time together.  I don’t know why it felt intriguing to me when I found out so-and-so just went for her screen last week.  Perhaps it’s because I’m no longer a Rookie.  Perhaps I’m getting in stride with others who have been on this trail.  It is interesting to me to hear experienced women talk about the vulnerability during the time of  follow up scans.  I just talked with P whose GYN found “something” after like 10 years in remission.  Mammogram didn’t show anything.  It was small, but with her history there is no playing around.  She immediately went to her cancer treaters and it was put on the “keep an eye on this” list.  No alarms, but caution.  She said “I was so surprised how quickly I had myself dead when the GYN told me she felt something that I hadn’t felt.”

My IV was put in my arm and not my port because they are not sure if mine is a ‘super port’.  When the dye goes in during the CT scan it has more pressure than a usual infusion or port flush.  SO they want to be cautious and not chance it with my port.  If I were to give advice to someone who gets a port it would be to be sure to get information about exactly what port is being used.  Keep the information close and be sure your treaters have it in the record.  It has been an issue from time to time with me.

Oh yea, the familiar feeling of being cold on the inside from this quick intake of a quart of cold liquid.  Oh yea.  5 minutes to go.   When you go into the CT scan, you get injected with a dye.  Oh yea, that warm “flush” as they call it.  Basically my respose to the dye injection is a really weird warmth on the back of my tongue, and a convincing sensation that I’ve just lost all bladder control.  I’m happy to say that I exited the CT room with my dignity in tact.  I remember the first CT scan back in August of 2009, I was told that I’d think I peed myself…still true.

It all went well.  I went on with my day and attended a great high spirited soccer game under the lights.  It was a beautiful starry starry night.  There were friends around me.  My head wasn’t cold.  I had energy.  It’s great to be back.

The follow up appointment is Thursday.  I have a workshop immediately after in a city an hour away, so I won’t be blogging until that evening.  I will keep you posted.

I thought I’d saunter into the survivorship clinic meeting with the genetic specialist MD and get my blood drawn after a quick consultation.  WRONG.  I brought the 5 page history form in all filled out, handed it in, was weighed and measured and … sat for too long waiting for the doc.  The staff were appropriately remorseful as they told me she’d be 15 minutes late.  About 45 minutes later she did come in. 

While I was waiting, I looked out to the pond with the fountain as the first rain in several days fell.  It was pretty much pouring, and the wind blew the spray from the fountain.  It splashed into the windblown pond in various patterns.  I love rainy days.  To restate the first sentence here, I really didn’t think much about the options that were about to be presented to me.  As I was enjoying the rain show, I let my mind wander into the darkness.  The purpose of genetic testing, in my opinion, was to see if there were any of the BRCA genes in my body that would determine the likelihood of a reoccurrence of cancer.  Just the idea of a reoccurrence and the subsequent treatment options, had me unimpressed.  I recalled the initial days of AC, the nausea, diarrhea, sadness, my hair loss, losing my ability to know what was going on in my body, fear of neuropathy, messed up nail beds, fatigue, burned skin…it all sort of flashed before me.  It was like I had both the feeling like it was yesterday and so long ago all at once.

Dr. Genetic Specialist came in and reviewed my family history.  The only notable cancer that I am aware of was my maternal uncle’s late in life prostate cancer, my paternal aunt’s colon cancer in her 70’s and my dad’s malanoma in his mid 50’s.  Unless the malanoma was a particular kind, none of these were of significant concern to her.  I don’t know what kind of malanoma it was, I DO know that my dad spent a lot of sunny days on roof tops and building houses without his shirt on, and never had a reoccurrence.  She asked if there was any chance that my biological grandparents could have been cousins or if I had Ashkenazi/Eastern European Jewish heritage, neither of which I answered in the affirmative.   I’m pretty sure about the Jewish heritage, and mostly sure that my grandparents were not cousins.  I suspect I could get into the geneology if I wanted to be sure as much as is possible.

These tests are done by one lab only.  They cost something like $3,500.  Insurance companies do not always cover the cost.  The social worker asked why I was considering this test.  Among my reasons was the fact that I have brothers, children, nieces and nephews and that I wanted to give them as much information about my/our genes that was available to us.  Another was to make choices about my body that could include prophylactic surgeries to remove the tissue that would be the most at risk (breast, ovaries and tubes).  I have a friend whose sister had ovarian cancer.  She had her OWN ovaries removed recently to avoid the occurrence of ovarian cancer herself.  Seems like a reasonable decision to me.  Social worker told me that I didn’t hear it from her, but I should NOT tell the insurance company that I wanted this test to help family members.  She asked if I would really consider having another mastectomy and removing my ovaries and tubes if it came back positive.

The catch here was that I did not meet any of the criteria that my insurance company (like most companies) laid out for eligibility.  The ONLY thing that remotely put me in the maybe catagory was that I was younger than age 50 when I was diagnosed.  That particular bullet said something like “under age 50 at diagnosis AND with two separate tumors”.  My tumor had ductile and lobular features, but was considered one tumor.

Enter conundrum flashback.  I was told that they could take my blood and send it on to the lab with my insurance and the lab could stop the process if/when they find out that it would not be covered.  No sweat off my back.  BUT Dr. Genetic Specialist would have to submit a very detailed family history to my insurance company, much much more information than they currently have.  It is allegedly illegal for the insurance companies to descriminate after obtaining so much info.  It is apparently NOT illegal for LIFE insurance companies to descriminate in this case.  And so, what did I want to do?

The thing that could have put me over the eligible edge would have been if there was one other case of breast cancer in my genetic history OR especially if there was ovarian cancer. 

At this point I have a DVD she gave me about genetic testing.  I plan to look it over.  B and I have discussed this and are leaning on the side of not pursuing at this point.  Dr. Genetic Specialist is going to talk with Dr. Oncologist.  She told me that she is NEVER surprised by a positive genetic test.  These individuals have significant ovarian/breast cancer in their families.  She is SOMETIMES surprised by negative tests.  She gave me a number, something like 7-10% of genetic testing comes back positive for BRCA 1 or BRCA 2.  She said that there will most likely eventually be more genes found to be related to cancer, but they just have not been cloned yet.  She said that based on my history she thought it would be fairly unlikely that I would test positive for the two genes that are currently identified as linked to breast/ovarian cancer.  She did offer a bit of advice.   She would recommend that breast screenings start for the next generation 10 years prior to the age I was when first diagnosed…age 37.  I can pass that on.

SO anyway.  There’s the long genetic testing story.  I’m going to watch the DVD, talk with others and sleep on it…maybe for many moons.  There is no rush.

You’ll notice that there is a new TAB at the top near the comments tab: Walk4Hope 2010.   The walk is on October 16, Saturday.

 Like last year, we will update our team’s progress from time to time on that tab.  There is a link on that page both to the MaineGeneral walk site and a link to our team page.  It costs $10 to walk and you can make an additional donation if you want as well. (The fee is waived for survivors.)

 We’ve set an ambitious team goal of $5,000.  You can set your own fund raising goal if you want and it will go toward the team OR just join our team donation.  You can forward the team page to anyone you think might be interested in walking or making a donation. A and I are seriously considering designing a fun t-shirt for the walkers.  We’ll see how far that dream goes!

I’m excited to be walking without the influence of chemotherapy.  Actually, I’m just excited to be walking AND to be walking with many of you by my side, hand in hand, or in spirit, where you have been for this past year.

Thanks

I attended my 6 month follow up with Dr. Surgeon today, CD in hand with the digital images of my mammograms from the last 3 – 4 years. Here’s what she said:  “The mammogram looks great!”  “I would like to do an MRI in 6 months, alternating mammograms and MRI’s for two good runs.”  This is in part because the mammogram was not a good diagnostic tool for me on it’s own, and the MRI really gave us the information we needed.  I like this idea even if it means continued potential to glow in the dark.

Dr. Surgeon is just what I need.  She has great bedside manner.  She remembers my story.  She asks about my family.  She smiles a great big grin with good news and at the sight of curly hair.  She shoots straight.  She has a good balance of compassion and professionalism.  I just have so much confidence in and respect for her.  This has been so important for me, and I really recommend shopping around if someone is in need of a surgeon.  I told her I’d be a poster child if she ever wanted to advertise the craftswomanship of her work.  We laughed.

She asked about the port-a-cath, and I told her that Dr. Oncologist wanted to wait until the CT scan in September.  I also mentioned that what her nurse said about some people keeping them in for years, and my dislike of that idea.  She totally supports getting it out to reduce risk of blood clots among other reasons.  She said it’s so easy to take out (local anesthesia for those who can stand being awake for such a thing), and another can be put back in if it is ever needed.  I told her about all the complements on her placement of the port-a-cath and on the scar.  She was appropriately humble.

She asked about B and the kids and said that husbands and partners frequently have a really hard time with the sense of helplessness that they experience.  (This is in addition to the added responsibilities they must take on.) B and I noticed that we really were not able to quantify the amount of stress he was under during all of this.  We also have noticed a significant drop in stress level as I have been able to resume my functioning.  Taking his nose off the grindstone has been a wonderful thing for him and us.  I think I’ve said before that he counts on me getting up at o’dark:30 as much as I do now.  It means I’m back.

I have made an appointment to see the “fitta” next week for a prosthetic breast.  I told Dr. Surgeon that I was not sure what would come of it but wanted to talk with her about options.  Dr. S said “I think it’s a great idea.  I know women who wear them once in a while with certain outfits.  You can always just not use it, but having it gives you the option.  With large breasted women, I recommend them  to help with weight balance.”  My insurance covers all of this stuff as long as there is a prescription, so she gave me a prescription for prosthesis and bras.  The fitter has a boutique in the hospital and there are really beautiful bathing suits and camisoles and stuff for mastectomy women.  SO, next week I will go up and talk with her and get measured so I can have an instant breast on the left side if I ever want it.  I’ll tell you how it goes.

There.  Now I feel like I can say with confidence that so far I have a clean bill of health.  The scan in September will be the next step on the mission.