Visit with the oncologist

My visit with the oncologist was about 5 weeks after my surgery.  Most of that waiting time was OK, because I was just recovering from surgery, getting my strength back, and getting into my activities - yoga, the gym, trying Qigong, reconnecting with a few friends.

In the 4 or 5 days before the visit, I started to get really antsy.  I was worried about what was going to get recommended to me.  I had tried to find the doctor on "rate my doctor.com" or whatever it's called, and although she was listed, there were no ratings or comments at all.  Hmm, was she that new?  Had she just graduated?  Or just moved to this city? country?

I had done my research on possible recommendations - chemo, tamoxifen, herceptin - and they all seemed dreadful.  

Out and about/social life

My goal was to get back to my life as soon as possible.  Keeping in mind that I'd had somewhat major surgery, my body had taken a beating and overexertion was to be avoided meant that I felt like I was treading a fine line. 

I was only in bed for about 2 days after the surgery.  So I had surgery on a Thursday, and got out of bed and got dressed on Sunday to sit in the back seat of the car as my husband drove my daughter to the airport.  Then he and I went for a short walk since the weather was gorgeous.  That was quite enough for one day.  I was whacked. 

The next day, my husband drove me to and from my hairdresser appointment for a shampoo, cut and blow dry.  It felt great.  That was it for the day.  I just sat inside, listened to the radio, couldn't concentrate enough to read and fiddled on the computer.  This was to be the extent of my activities for about 2 weeks. 

For the next 10 days, I found I could basically do one chore a day.  I wasn't up for visiting with people or even talking to them over the phone.  Communication was by e-mail and I gave friends sporadic updates.  But if I did some grocery shopping, then that was it.  I was tired. 

For the first week, I either had a nap or just a lie-down each afternoon.  And still slept 8 or 9 hours a night.  And when I stopped napping and resting, I still had a really slow period in late afternoon.  I just faded around 4 or 5, picked up for dinner and early evening and then often had to force myself to watch TV in order to stay awake til 10.   Then I'd sleep til 7 AM.

Exercise is recommended and I did exercise before the surgery, but the tiredness was overwhelming.  And then it became a vicious cycle.  I was too tired to exercise and the lack of exercise meant I was always tired.  I wish I pushed myself to do some exercise earlier. 

My sleeping also got intermittent.  I could always fall asleep right away, but now I was doing what often happens - go to sleep, wake at 4 AM and lie awake for an hour or two.  My usual tricks of meditating, concentrating on my breathing weren't working - they still aren't.  I don't want to resort to sleeping pills, so I'm not sure how I'm going to get over this.  Happened again last night.  And this was after a LONG, 10 km walk yesterday - I was sure that would have guaranteed me a good night's sleep!

It is now 3 1/2 weeks since my surgery and we have almost no social life.  I am too tired at night to do anything so any socializing that happens occurs during the day when I might meet up with a friend for tea or lunch.  I am up to 2 chores or outings a day now, but then that's about it.  I've heard that some women go back to work a couple of weeks after surgery, and I can't imagine it.  I'd be a basket case.  Perhaps they have to, and that would be rotten to be in that position. 

So I'm working on getting my life back, but I have a ways to go yet. 

Pathology reports finally and depression

The reports I wanted came in two parts.  The first part told me the type and the size, and also confirmed that the sentinel node biopsy was clear.  I got this news from my surgeon.  All of this was pretty good news.

The surgeon also said that he would refer me now to an uncologis, who would be the person to review the results and to recommend further treatments.  I still don't have that appointment set up, and am waiting to hear when it is. 

The second report, which would give me the hormone status and the HER2 status, was delayed.  Finally, I got the report yesterday while I was at my GP's office, getting my incision infection looked at.  It was a full week after I got the other report.  I knew that these were important reports that were instrumental in determining which kind of additional treatment would be recommended to me.  The hormone status would also be helpful to know in order to know what foods I might better eat and more importantly avoid.  I had done tons of research and wanted to know the results. 

To my surprise, I ended up being both estrogen and progesterone negative.  This, I gather, is somewhat unusual, but there are all sorts of variations.  I was all prepared for hormone positivity, which would lead to tamoxifen being recommended.  But I wasn't.  What showed up was HER2 positive.  And that one, I didn't even understand.  In all of my research, I didn't understand this HER2 stuff. 

As I mentioned, I am not a medical person.  I barely passed biology and chemistry in high school and don't read any scientific articles now.  My GP also either was not sure what this HER2 stuff was about, or didn't want to say (I think that he wasn't sure of it and thank goodness, he is not one to guess).  So I ran home to try to understand. 

It didn't work.  I didn't get it - I couldn't understand what I was reading.  What I did understand was that the recommended drug was likely going to be Herceptin, and what I read about it scared the pants off me.  It has so many bad side effects listed, it would scare anyone.

I am an information freak.  I like to be informed (about lots of topics) and I certainly like to know what's going on with me. I am good at research and read tons.  I absolutely do not want to be surprised.  And I also do not like to be confused. 

So here I was last night.  I was surprised by and did not understand HER2, was scared out of my mind about Herceptin, had a scrape on my head due to an overactive freckle that had gotten excised for pathology by a dermatologist a few days earlier, still had uncomfortable swelling around the incision and was on antibiotics for an incision infection.  This was not a good combination. 

I felt so battered.  so beaten up.  And when I (or anyone else) look at the list above, well today, I feel sort of embarrassed.    It could be a lot worse!  But another of my learnings is that I am allowed to feel the way I feel.  Sounds trite, right?  But I felt rotten, I know that.  And I just said to my husband, "I"m allowed to feel bad sometimes".   So I took to my bed at about 5 PM and didn't get out all night.  My husband brought me dinner in bed, we watched TV and finally found a "Harold and Kumar" movie on TV that was so stupidly funny, it suited me and got my mind out of its doldrums.  So much for a social life. 

I'll talk about social life in another post, as well as how I got through the depression and anxiety when I first realized I needed a mastectomy.

Infection!

The swelling that I have concerns me.  I mentioned that in another post.  No one else is concerned about it.  I've been told that it could take up to a year for the swelling to go down, which does not please me at all.  That's why I go to Compassionate Beauty for the lymphatic drain massage.  Well, I've gone once and when I went the second time (yesterday), she stopped when she saw that my incision had become infected. 

When I had asked about the swelling, I had been told that what I really needed to be concerned about was infection.  At the time, I had a lot of bruising, so I asked what infection would look like.  I was told it would mottle my skin, it might feel hot, I could have a fever, the skin might be streaky. 

So, I was very concerned when a couple of nights ago, when I was getting ready for bed, I noticed a couple of angry looking triangle shaped red marks, above and below my incision.  They were not large, perhaps 1 1/2 inches tall but this was a change.  They hadn't been there before.  And for some reason, I had thought that if there was going to be any infection, it would have shown up before this.  After all, I was exactly 3 weeks post-surgery!

The next morning, they didn't seem as red, so I went to a nutrition workshop in the morning and off to my lymphatic massage around noon.  As I mentioned, she did not go through with the massage.  She was afraid that the massage would end up spreading the infection through my system and we agreed that she should err on the side of caution.  She advised me to see a doctor about it. 

Not wanting to wait for hours in a walk-in clinic plus being afraid that I would be prescribed an anti-biotic that was too weak, because they wouldn't know my history, I pleaded with my doctor's clinic to see me without an appointment.  It worked.  It was also Friday afternoon, so if I didn't see him right away, I faced the prospect of the walk-in clinic for sure.  My GP's office is a wonder and I am constantly grateful for the service I receive from them.   

With one glance, my GP confirmed I had an infection, even though I did not have a fever.  My skin was hot, the redness had returned and what I had previously thought was bruising was probably infection that I had had for a few days. 

He prescribed anti-biotics that I filled and started taking right away.  It has only been 24 hours, so I hope it does the trick.  I think it will. 

My advice?  If you suspect anything, GET IT CHECKED OUT!  I wish I had gone to my GP earlier when I saw the "bruising" and am super glad I saw him when I did.  Not that I'm delighted to be on antibiotics, as I believe they are not good for our bodies - but in this case, I wasn't going to fool around and knew that this was the best option for me. 

Reconstruction

Yowza what an issue.  Such a personal choice.  And so much emotion surrounding it. 

I had read many books from the U.S., where they seemed to be saying that reconstruction was often done at the same time as the mastectomy.  When I asked my own surgeon about whether that was the norm, he just said that he didn't do that.  As it turns out, I was later told that no surgeon in Calgary did that.  Evidently, if you want reconstruction, you have to get over the mastectomy and then Calgary surgeons will do the reconstruction a year later.  I don't really know the reason for that.  Is it partly a concern from the surgery perspective?  to make sure women had recovered sufficiently and were strong enough for more surgery?  Is it to give women time to make sure that they really want the reconstruction? I don't know. 

I'll say upfront that I have decided not to go through with reconstruction.  So, as I keep saying, this blog reflects my thinking only.  If you have decided to go ahead with reconstruction, that's your decision and I think we all have to respect others' decisions. 

There are a whole bunch of reasons for my decision, aside from money.  Here, reconstruction is covered in our medical system, so cost was not a factor at all.

1. I hate surgery, so the thought of having yet another surgery was not appealing at all.  More surgery just means more chance of infection and things going wrong.
2. More than one surgery may be required to get things right.   
3. I did not want a silicon breast implant - I think those things have a horrible history and are toxic in the body, so I didn't want one in mine. 
4. I wasn't keen on the idea of them having to scrape parts of my body, probably my abdomen, to get the tissue needed to put in my breast.  This seemed to me to be like a skin graft - my brother has skin grafts and they are not attractive. 
5. My reading indicated that you had to have an expander put in you, to stretch the skin enough to be able to place the tissue to form the breast.  A number of people in various forums or chat rooms commented that this was extremely painful. 
6. It won't ever feel like a breast.  The nerves clearly have been cut, so it's not a breast. 
7. The intent is to have the two breasts look the same - the fake breast and the real breast.  In my case, it was likely that they would have to reduce the real breast just to have them the same size.  This meant even more surgery - and on a breast that was healthy!
8. The option of having a nipple tattooed on just seemed odd to me. 
9. My husband, who has been supportive of me enormously through the whole process, did speak up and was against the prospect of reconstruction for all of the reasons given in this list. 
10. I am not of child-bearing years, so I didn't need it to nurse a child. 
11. There were a whole lot of other factors having to do with the role of the breast in society, body image, society's expectations of women, whose need would I be satisfying by going ahead with a fake breast and why would it be so important to me that I would put myself through that?
12. The surgery is LONG - with all that anaesthetic being administered.  Depending on which option for reconstruction is chosen, it will take between 6 and 10 hours.  I had decided against reconstruction even before I found out this last point.  If there had been any hesitation at all about my reconstruction decision (which there wasn't), this last point was the clincher.  Ten hours of surgery - I wouldn't put myself through that unless it was absolutely medically necessary. 
13. I just talked to another health care professional yesterday who said that she had seen a number of cases where the reconstructed breast contained pubic hair, since that's the area where they take the tissue for the skin graft!  Again, that just seems weird to me.   

At least I'm getting used to seeing myself with one breast while the other side is flat.  It's weird, for sure, and I'd rather still have my breast for sure.  But I'll get used to it.  And I won't get reconstruction.  It's just not for me. 

Support in the system

I am very lucky to live in Alberta, Canada.  We have great support services here and most of them are free - as I mentioned before, we pay for health care through our taxes and when you need health care, it's then free.  I thank my lucky stars for that. 

Even my surgeon was great in terms of appointments.  I never had to wait past my appointment time and he was efficient in his appointments, so that we talked about what we needed to talk about and I was on my way. 

The first service that has started in our health region - well, it started a few years ago but was not around when I had my first bout 15 years ago - is a position called a "nurse navigator". 

The nurse navigator is the "go-to" person for questions.  My person worked out of the Breast Health Clinic nearby and most of the time, I have just phoned her with my questions.  She has copies of all of my medical reports, so she knows exactly what is going on.  She is a nurse who has worked as such for years, so she knows how to read these reports and knows how to answer my questions.  She doesn't have to go anywhere else for answers - she has answered anything I've asked.  This takes the onus off of the surgeon's nurse for answering questions, so that's a good thing. It also provides a central person who can help with questions of how to navigate the system, what symptoms are of concern or of no concern,  what other resources are available - she's terrific.  And she has either answered the phone when I called or has called me back within 1/2 day - so there is no waiting and stewing about a concern.

Another service I have used is the clinic psychologist - another wonderful woman who I have talked to a few times.  For a week, I was out of the province, so we even chatted by phone for our appointment!  I don't know if there is a limit to the number of sessions I can have - I assume so but haven't asked that question.  What I do know is that she was pivotal in helping me to reframe the whole situation and to be in a better head space about it all.  I credit her with the fairly decent place I'm at right now.  You have to click with any practitioner you have, and we just clicked.  As I mentioned, getting my head around this whole situation will be addressed in another post. 

There are also free workshops that are available.  There are 2-hour workshops, "Before Breast Surgery" and "After Breast Surgery".  There are sessions for cancer patients generally on exercising, and a program for breast cancer patients specifically for exercising.  If you develop lymphedema, there are resources for that, as well as free physiotherapy sessions.  There's a very reduced rate for yoga classes, financial assistance for prosthesis and free financial counselling and advice.  There are probably more sessions that I don't know about yet.  We truly are lucky.

Another resource that we have in some places in Canada is a place called Wellspring.  This is an amazingly warm, welcoming place that has lots of programs and services - classes for art, exercise, drumming, QiGong, creative journaling, resume writing and back to work workshops, photo walks, to name just a few.  And all of it is free. 

After surgery

As of today, it's been 18 days since the surgery.

My surgeon must be brilliant, because my scar is really pretty good.  It's red of course but pretty smooth and will settle down as scars do.  Not just the scar is red, but the area above and below the scar is red, probably caused by the steristrips.  There is swelling (more on that later) and it's numb.  So it certainly doesn't hurt, it just feels odd.  There isn't a moment when I don't know I've got an incision.  I wonder how long it will take for that feeling to go away. 

Finding a sleeping position was awkward at first.  I had to basically sleep flat on my back, because I had incisions in both breasts and a drain coming out of my right breast.  On top of spending most of the day flat on my back, feeling a bit dopey from the anaesthetic, I didn't feel like sleeping at night on my back.  My husband put lots of pillows under my knees, which helped.  On the third night though, I was able to at least turn a bit onto my left side - it didn't really hurt on that side although it pulled on the right, so I had to be careful.  But at least I could move a bit!

Dealing with the drain I found yucky.  I don't deal well with blood so emptying out my drain was distasteful. 

The instructions for the drain are that when it slows down to a certain level, it gets removed.  This happened 5 days after my surgery.  My flow had not been large and on day 4 and 5, it was slow.  The flow was always red, it never turned any other colour.  I was apprehensive that this was too soon to get the drain out, but the nurse seemed to think nothing of it. 

It was a relief to get the drain removed.  It is a bit awkward to deal with, awkward to sleep with and I hadn't realized how long it was!  I guess it works kind of like a weeping tile around the house that collects water and gathers up fluid along the incision site.  But getting it out meant I could now turn a bit onto my right side when I lay down, so that helped with my sleeping. 

For the first few days, for washing myself, my inventive husband found an old shelf from a bookcase and we were able to put it over the sides of the bathtub to create a seat.  We had a wand gizmo attachment that allowed me to at least sort of spot wash myself, which felt great.  I was leery of getting my incision wet, still had the drain in and felt a bit wobbly so didn't want to get in and out of the tub. 

After the drain was out, I got into the shower and was just careful and it too felt great. 

They had dressed the incision  with steristrips, and I had internal stitches, so I didn't have staples and didn't need to worry about getting stitches out.  As I continued my showers, I deliberately got my steristrips wet in order to loosen them up.  They were starting to pull on my skin, and 10 days after surgery, I pulled them all off.  That did not hurt a bit - I think the showers helped with that a lot. 

I had gone to a women's cancer supply store in town before my surgery, and it was fabulous - I am glad to name them!  It's Compassionate Beauty.  They have an amazing store.  Not only do they have products for cancer patients - underwear, bras, swimsuits, hats, and more - they also have services.  There are separate rooms for various functions - one where you can get your head shaved and wig work done, one for getting makeup tips and pedicures and manicures done (special and careful procedures must be followed so the practitioners are specially trained), one for the tattooist, one for the the massage therapist (I got a lymphatic massage, which was terrific - more about that later) and one for getting prosthesis fitted.  All of the people who work there are specially certified in their fields, are caring and super helpful.  The store itself is nicely set up and decorated and I felt comfortable from the first time I walked in. 

My first purchase from them was a camisole style bra/top.  See it here.  I got the one on the right.  Camisole  It was to be worn under clothes, zipped up the front, had a padded insert (falsie) and pocket for it and best of all, a Velcro attached pocket for the drain!  It is made of Lycra so is stretchy and held everything in.  It is very comfortable.  I am still using it.  I don't need the drain pocket of course now.  And I can't get a real prosthesis until my swelling goes away and I am all healed - which I guess will take a month or so.  So in the meantime, this camisole is great.  It's not cheap, and is not covered by my insurance plan, but I'm glad I got it.  You can order products through their website or just phone them - they will help you out with no problem, I'm sure.

I found out that having the pocket for the falsie was a good thing.  One day, I wore just one of my old "normal" bras and stuck the falsie into the right side.  OK.  The problem arises when you go about your day and the falsie kind of moves around.  At one point, I looked down and saw that the falsie had moved towards the centre of my chest, so that looked really weird.  Not a great solution for me!  Falsie pockets are good. 

Another day, when getting dressed, I couldn't find either of my two interim falsies.  I had taken them out during the day and later found them in different places in the house.  I had almost texted my husband with a message of "boob alert - have you seen my falsies?", but found them before I needed to do that.  Perhaps finding random falsies around the house was going to be the new norm. 

Swelling.  Well, I was not prepared for this at all.  Right after the surgery, I had the red angry incision but I had no swelling.  As I mentioned, the drain came out after 5 days and then I started swelling.  And it was really uncomfortable.  Not painful but uncomfortable.  And I got concerned.  Had I gotten the drain out too soon?  How swollen was it going to get?  It felt like my incision was getting really stretched in the process.  the swelling was above and below my incision, and extended under the armpit.  I called the nurse navigator a couple of times and even dropped into the clinic (who were fabulous and saw me even without an appointment) but got told this was normal, don't be worried and it would go away in time - perhaps a month, perhaps six months!  I also found out that it is normal for the swelling to start about 10 days after surgery.  How come I hadn't read about this?  One person described it as feeling like you have a tennis ball under your arm, which was a great description.

The swelling was bugging me though.  It was uncomfortable and made wearing my camisole impossible because it chaffed too much under the arm.  This meant I had to wear an old undershirt which I had to cut to open up the armhole even more.  And it's not a terrific solution.  Wearing an undershirt means that one breast is loose and hanging while the mastectomy side is flat, so it does look weird.    I could do that around the house but was glad the weather was cool enough that I had to wear a jacket when I went out.  Even wearing any tops at all was uncomfortable because they irritated at the armhole.  And I didn't get it.  I hadn't even had any lymph nodes removed - I had just had the sentinel node biopsy.  Why were the lymph nodes seemingly not working well?  I didn't have any of the "danger" signs that I'd been warned about - this was not blood that was pooling.  I was told to watch for blotchiness, redness, fever and the swelling getting worse.  None of those things happened - and the swelling wasn't in one particular spot - it was general in the area of the incision.  So there wasn't anything of immediate concern. 

Getting the answer of "just live with it" never suits me.  So I did two things last week - I went for acupuncture one day and then back to Compassionate Beauty for a lymphatic massage.  I always like acupuncture and feel it is very helpful.  The massage was really interesting and I believe very helpful too. 

Lymphatic drain massage.  The practitioner had me lie face up, natch.  What she does is to massage the lymph nodes, first in the shoulder area and neck, then in the chest area.  It is a very gentle massage, and very relaxing.  She also massaged the incision site to make sure that the scar was not sticking to the underlying tissues.  The whole procedure felt terrific.  I was most relaxed when it was over.

What I found out was that the radiation done 15 years ago had probably affected and damaged my lymph nodes - which might explain why I was having this swelling problem.  The lymph glands were having some trouble "re-routing" this time around and so the massage would help to create new pathways in my body.  Since I am visual, I saw it as a river that encounters a blockage.  It backs up for a bit and then has to find another route to move forward.  That's how I understand this lymph situation. 

My swelling is down a bit - so that I am more comfortable.  Was it the acupuncture?  The massage?  A combination?  I don't know. I just know that I will get both procedures again next week to take care of myself.  These are both things that I have to pay for and will not get reimbursed for, so I'm glad we can afford it. 

I'm also putting Vitamin E oil on my incision.  I'd read somewhere that it was helpful in hastening the healing and lessening the redness and lumpiness of the scar.  Just sticking a pin in a gel cap of Vitamin E and squishing the contents onto my finger and smearing it around.  Don't know if it will help, but at least it feels like I'm doing something.  Figure it can't hurt and it's not expensive.

One of the things I had been told in the recovery room, but forgot about (go figure!) was to take deep breaths to clear my lungs.  I only remembered this about 4 days later and was glad I did.  My lungs almost had a kind of minor congestion in them so breathing deeply and coughing cleared them out in about another 4 days.  Even now, I have to remind myself to take deep breaths a couple of times a day.  I wish I had been reminded of that when I got discharged, when I had more chance of remembering it!  Or if that piece of advice had been included in literature I'd been given. 

In terms of getting out and about, I kept a hair appointment 4 days after my surgery.  My husband drove me and picked me up, since I was still a bit shaky and still had my drain in.  But it felt so good!  To get my hair washed and cut and looking good.  As soon as I saw my hairdresser, I said that keeping the appointment was in large part psychological.  I simply wanted to keep the appointment to show that I was going to resume my life.  And I was really glad I did. 

I also drove myself to the doctor's office the next day (so 5 days after the surgery) to get the drain out, and I learned from that, that driving was not yet a good idea.  I was still a bit woozy and driving with a drain was definitely not a good idea.  If I had needed to make a sudden movement/motion while driving, even though I was wearing the camisole, with the drain fairly well secured, it would have been a bit tricky.  Fortunately, the office wasn't too far away and all was fine. 

But the next day (6 days after the surgery), I got a friend to drive me for my appointment with the clinic psychologist and another to drive me home.  Getting friends to drive was a good idea. 

The next day - one week after surgery - I was able to drive myself around, and I was glad. 

Thirteen days after surgery, I went to the yoga class that I had signed up for previously.  It is a very gentle, restorative yoga and I had taken a class with the instructor before and found her fabulous.  So I told her about my surgery before the class, and she checked on me constantly through the class to ensure I was fine - and I was.  It felt good to move around and be part of a "normal" class. 

Another consistent piece of advice is to "take it slow and easy".  And I have found that to be true!  For the first week, I basically stayed at home and watched videos.  I wasn't up to doing anything else and found I was too tired to even read.  Week two, I could really go out to do errands only once a day.  More than that (and I tried it one day) and I whacked myself out - I was really tired.  For that first week too, I had a nap or at least a lie-down every afternoon.  I knew I was making progress when I didn't have to have a nap!  But I still have a "down" period every afternoon when I really need to keep quiet and just read.

Talking on the phone is also tiring.  Again, week one I just e-mailed my friends to give them my update, but I found it too tiring to talk either on the phone or in person.  I still (3 weeks later) limit my phone conversations and in-person chats to one hour.  And only one of them a day!  We certainly don't plan on doing anything in the evenings - I am just too bagged.

I know that I need to get out and exercise.  What's stopping me?  Well, I find I am protective of the incision.  I have to watch that I don't hunch over and am constantly having to square my shoulders and straighten my back.  I seem to be afraid that I will injure my incision somehow, which is pretty unrealistic.  I also find that my breathing is really shallow, as I mentioned above.  I had to remind myself to take deep breaths numerous times a day.  And I know that exercising will probably give me more energy.  So I don't exercise and I am lacking energy - it gets to be a bit of a vicious cycle, doesn't it?  I just have to get off my butt and do something.  But I'm going to yoga once a week, so that's a start, I guess.