Not feeling well

This morning is a rough one. Maybe because I went to bed late and the kids woke us up early (Happy Easter).  Or I had a bit of candy already.  I'm doing my morning infusion and just sore and not feeling well. 

I'm fed up with being wrapped up, it feels like my skin is irritated.  I've been unwrapping myself during the infusions for some relief but I still leave the gauze on. 

Hopefully the day will get better and my daily walk will be enjoyable.   Cross your fingers for me.

My picc line

Here is my picc line. I have two tubes and I alternate them each time I give myself an infusion.  It might be silly but I feel a little accomplished after each one. It is one thing that I can do, without pain, and it makes me better everyday. 

The other picture is the supplies I was sent home with.  Lot and lots of meds!

At this point since my surgery,  2 weeks and a day I still can't get my chest wet so no shower, havent tried to drive yet partly because my husband doesn't want me to and I'm not sure if I have the range of movement to. I'm still wearing button up shirts and nothing over my head and I have a hard time putting my hair in a pony tail.  I am to reach for things a bit over my head, with a little discomfort,  wash my hair by sitting on the tub and slouching over (big yay), can use my arms a bit to lay down and get up. I put a bit of pressure on them which makes it so much easier getting out of bed.

Even though I am working through this infection and still have my drains and picc line on my right side,  I'm feeling stronger.  BTW, my right side is much weaker and painful than the left with all these tubes in. I'm hoping my drains come out next week.

I haven't received any injections in my expanders yet, the only thing I'm waiting for is the drainage to stop. The infusions won't delay that process!!!! I had a dream the other night that I finally got an injection and I was so happy! ! Lol I'm getting a bit self conscious with flat chest and my drainage bulbs protruding under my shirt. Not to mention I'm bloated with the constipation.  :-\ I don't think I will mind just the my flat chest plus I won't have it for very much longer. 

I had my physical therapy consult yesterday,  it is going to be painful amd challenging but I'm ready to get back to myself again!! I will go 2-3 x a week. The Dr. said I will be setting my own pace, I will be pushing myself!

Update on the last few days...

Its been 3 days since my last post, I've been so busy and tired with everything since!  I'm tired right now, but I feel like I need to update my blog and continue on. 

I woke up Thursday morning, I had an emotional day, the day before when I found out about my infection and all of the possible outcomes.  I woke up pretty positive then I get dressed to start my day of appointments and I was draining from my incision on the left side.  I woke up my husband with my whine - 'OMG - seriously!!!!'.  I calmed down a bit when I noticed the leakage wasn't bloody but it was yellow/orange and matched the color of my drains on the right side.  So I reinforced my bandage with gauze and awaited my nurse sister to whine to her about it. 

I had my sister pick me up for my appointments to get  a CT scan and a picc line.  She wasn't too concerned as she mentioned - better out than in and we figured my drain might have come out too early.  So on to my first appointments...

I had a bit of a wait at the radiologists since I was squeezed in for that appointment.  The picc line was put in first, the actual procedure was not bad at all, however the 30 minutes of waiting to get the picc line was pretty painful.  I had my right arm, because the infection is on my left side, completely to the side of me at a 90 degree angle.  I hadn't stretched like that since my surgery, it was tight and painful.  Other than the long wait, that was the most painful part.

Next was my CT scan; I had never had one before and didn't know what to expect.  My scan was 'with contrast' so I was injected with dye or some sort of liquid, I really don't know.  Luckily the tech warned me of the effects of this!  Once I was injected (in my handy picc line) I had a warm sensation in my chest all the way down and it felt like I had pee'd myself because my bottom half was warm too!  Made me chuckle because I had to remind myself - I didn't pee ... I don't have to pee ... but hold it either way! 

Next was my appointment with the nurse at the infectious disease doctor where I would receive my first infusion.  I also notified the Dr. of my drainage so he could culture it and see exactly what my infection is.  That was the one thing about the leaking.  I also received a good re-wrapping of my gauze and bandages which always feels good; well, unless its too tight.

At this point of the day, I am kind of excited about my picc line - no more getting stuck with needles! (I'll post a picture in another post)  and that I was almost done with my day of appointments.  The nurse gave me directions on my antibiotics and how to give myself the IV since I would be doing the rest of the infusions at home .. by myself... yikes!

The first antibiotic is Vancomycin which would take an hour in the IV drip and afterward I would have Cefepime which would take 30 minutes.  I will be doing this every 12 hours ... so 3 hours out of my day getting loaded up with antibiotics.  Between the 2 the side effects (that shouldn't cause alarm) are itching, acid reflux, and fatigue.  These meds would affect my GI tract so probiotics were recommended.

Finally, at 5pm I was finished with my appointments!!!!  I was so tired and walked out of there with 2 large bags of a weeks worth of supplies. 

When I got home, I noticed that my drainage on the left side was seeping out at a rapid speed.  I ended up using maxi pads to help soak up all the liquid, which I had to change multiple times.  I soon figured out that I needed to lay flat to slow it down.  Luckily I had an appointment with my surgeon the next day.  I was a bit nervous to find out what the next step was since all this drainage was coming out and really wasn't a good thing.

At the Drs office for my drainage the nurse ended up massaging all of the liquid out of my chest.  Dr. O'neill explained to me that she stitched me up with 3 layers including some adhesive mesh to keep my incision closed.  Since the liquid had to go somewhere it seeped out the incision, but there wasn't a hole in my incision and nothing could get in.  Depending on how much I would need to be drained would determine the next course of action - massaging the liquid out again or putting new drains in, in the area that would catch the drainage, this time.  Given the amount of liquid that was being drained in my drainage tubes, it was correct to remove the drains.  It seems that the drains weren't in the area that they needed to go.  The Dr. didn't do anything wrong, it isn't an exact science as to where you're going to drain.  So to finish this up, I was drained and sterry*? stripped back together and I see the Dr. back on Monday.  I'm thinking I am going to have to be massaged again, but we'll see! 

I will have to finish this up tomorrow of today's activities.. I am exhausted!!!!

And the day started off so well ..

I woke up feeling decent, finally after 10 days had a BM (TMI - whatever I showed you my foobies) so I was feeling so positive that my healing was gaining momentum.  Then I went to the infectious disease Dr.

So I have cellulitus*. An infection in my tissue.  The Dr poked me all over my chest, it was painful!!!! So what does this mean? Well, tomorrow I will be getting a chest CT scan and a picc. I am told the picc is an IV that is in your arm and is threaded up to your shoulder. They do that so when I get the antibiotic IV, I already have the line in and it is located in a central place.. my shoulder. The Dr. projected 6 weeks of treatment since I have expanders in.  There is a 50/50 chance that it will work,  however the Dr. said he has a good success rate.  If it doesn't work then my left expander will have to be removed. (This is when the tears started.) Depending on my CT scan I might have to have the fluid drained too.

I am hoping .. PRAYING this is all just overkill.  I know I have an infection and my current meds didnt work and I need more meds but I am pretty upset and scared about this.  Better safe than sorry.

I will know more tomorrow of the specifics tomorrow.  My entire day will consist of test and then getting the first infusion. 

As my sister reminded me - I did this for all the right reasons!  I keep having to repeat it to myself.

Relief! (Pictures)

I went to the Dr. today and she replaced my bandages!! Felt SOOO good. Apparently I had a really long ace bandage. The wrap was rolling and bunching and probably cause the sharp pain when I took a deep breath.  I can't even explain how much better it is without that other dressing! !

As far as my infection,  it is still there and seems to be getting bigger. The Dr. referred me to an infectious disease Dr. for a hardcore antibiotic IV.

I still have my drains in, for now, and I see the Dr. again Friday.

Brielle was in the room with me, her choice,  and she took some full frontal pics!  So far everything looks good and my incisions look even, hopefully it will stay that way.

I have little lady lumps there! They are my foobies - fake boobies. I noticed that's the term some ladies used and it makes me chuckle because that is what they are!

I'm in good spirits today and I'm not questioning whether I can do this anymore!

Mornings aren't fun

I estimate that it takes an 1 hour 30 min after I wake up to feel up to doing anything, that is if I have to get my breakfast, meds, and everything.  I have just passed that mark.  The antibiotics and pain meds must be taken with food.  Since I have been having a fever because of the infection, I am freezing in the morning!!  But I did it! 

Even though I have, what feels like a large goose egg on my chest, above my collar bone and now I have a pain on my right side which feels like I cracked a rib, my range of movement has increased.  I hesitate to reach for something, so I reach slowly and it doesn't hurt!!  That's exciting news for me! 

On the yucky medical side of things, one of my right drains are still getting full.  In 24 hours, my drain has about 60 ml (of coarse I drain it twice a day).  My other drain is less than 20 ml.  If you noticed in my picture, the drains are inserted side by side going into my body, I am assuming that they are placed in different areas of my body though??  Given that 1 drain has minimal fluid, I would think it can be taken out but I am nervous because of the issues I have with the other drain.  I hope the Dr. gives me some information as to why this is all occurring on my right side. :-/ 


This video I saw from a friends FB page and thought it was the sweetest video.  I often think about this girl when I am reassuring myself that I did the right thing have my mastectomy.  I couldn't imaging chemo while healing from my surgery.  Even though I do not have cancer, this video is inspiration.  Thank you, Megan Kowalewski for your creativity and positive attitude!

Small complications

Yesterday I noticed that one of my drains had a milky look to it, which cause my sister to worry.  Later that night I had a fever but it was only 100.5 degrees.  After calling the Dr., she told me to alternate ibuprofen and Tylenol every 4 hours and call her in the morning. It was bedtime and I only had ibuprofen so I took that and went to bed. I woke up this morning with a 101.5 fever but no meds in my system.  The left part of my chest, by my collarbone was more swollen than yesterday and it was very firm. It was kind of odd since the milky drain is on the other side.

I went and saw the Dr's PA and she said I have some sort of infection and the Dr. gave me 2 different antibiotics. I also had to move up my appt next week for Monday.

Just a minor hiccup in a smooth healing process.  I still have pain especially with the extra swelling but my range of movement has increased and my appetite has gotten a little better.

I had my hair washed at the salon again. Felt so good but I am exhausted and now have a nap on my schedule for today.  Lol

In better spirits

I was having a hard time earlier,  in pain,  emotional because I was feeling like a burden,  stress from my school work .. etc.

 

My Dr. appointment went well. She (Dr. O'Neill) said that 1 in 10 gene carriers that come in for a mastectomy,  like myself,  come up with cancer, even after all of the other tests that said otherwise.  So this was amazing news!  Part of what gets me through this is knowing I don't have to go through chemo or possibly radiation during my mastectomy healing time. That's strength right there. 

 

I talked to my sis today; haven't since the day before surgery. She lives in Washington and she also had breast cancer and BRCA 1 +. That lightened my mood. :-)  Even though her surgeries were quite a few years ago and things have changed, the amount of pain and discomfort remains the same.  I was trying to explain to her that I am not quite flat chested.  I would consider myself similar to a chunky 11 year old boy cleavage :P .  We also joke about the range of arm movement.  Not being able to reach above you or extend your arm is like being a T-Rex.  It makes me giggle everytime instead of being upset when I can't reach something. 

 

 

 

I am completely ready for the rest of my drains to be removed.  I feel like I have a alien baby under my shirt with these two bulbs protruding out.  They are so gross too.  When they are removed it is just one step closer to being done!  It a long road so I am making small goals. 

 

FINALLY, I got my hair washed earlier today!  It was so wonderful.  I went to a salon to have them wash it since they have those lean back chairs.  I was re-energized plus it was only $4. so I will be going back a few times! 

 

Like I said, little by little, I'm getting closer to the end and I am cherishing every step toward comfort.

1st Doctors Appointment (Graphic Pics)

I have finished my first doctors appointment it was painful but also a relief in different ways.  I have 4 drains total, 2 on the right and 2 on the left; I had the 2 on the left removed.  They had very little drainage.  It was painful but having them out took away a lot of pressure. 

I didn't get the big unveil, I was only unbandaged enough to remove the drains, the bandages on the right side weren't even touched.  I thought I would have seen my battle wounds espcecially since the Dr. remind me that my chest looks the very worst it will through this whole process.  I don't know if I was necessarily ready to see my incisions but I wasn't disappointed either.  I have another appointment next week, hopefully I will have my other drains removed!! 

I was able to have the nurse take some pictures so here they are! 

This one was taken a day ago.

 

 See on my left side they cut the gause just enought to remove the drains; they were sutured in, so they cut the stitches and pulled it out.

 

Exposed.

Not the most flattering of pictures :-/

Today I am emotional and tired.  I am still taking classes and have two tests due today but all I want to do is sleep.  I'm thinking about a nap before I do anything mental, the nap will win. 

That is all for now.

Uncomfortable but home

My last post was for the day of my surgery, Saturday was quite challenging.  At this point it had been 24 hours since I had taken my normal medication for my anxiety, depression, and all that other psycho drugs I take.  Normally if I forget any of those meds, my body feels it within hours, so it was pretty intense and I was a wreck.  My night nurse was really good, nice, and responsive.  The day nurse was not.  The morphine caused nausea so I was received an IV to stop me from feeling sick.  I received that dose twice during the night.  In the morning I told both my nurse and the CNA that I wasn't feeling well and I wanted something.  Unfortunately, I didn't receive anything and I threw up everywhere!  Of coarse it was painful since all of this was coming from my chest, it was so embarrassing and I was so upset since I requested the medicine and they had ample time to administer it.  I over reacted and started yelling because I felt that this could have been avoided and I also felt that the nurse was being very condescending with the way she handled the situation.  Its hard to explain what had exactly taken place.  I was already a mess mentally and now literally.  Not my finest moment.  Subsequently I received a new nurse and spoke with the charge nurse.  :-/

Later that day, my sister (the nurse) and my mom was visiting.  I finally had help to stand up; another thing the nurses didn't want to help with even though I requested help and the doctor wanted this as well.  It was painful but I am glad I was on my feet.   From then my catheter and morphine IV was removed.  I felt SO much better then. 

Getting comfortable and sleeping was a challenge.  Getting up from bed was too.  I was hesitant to go home because the bed was needed.  It propped me up high enough to get out of bed but also adjusted so I could try and rest. 

To make my situation a bit worse, I am taking classes during all of this time and had a paper due.  I don't know if I would change taking classes during this surgery, but it is awfully hard to stay up, thinking, for a long period of time.  I think I will be able to make up my paper since the one that I submitted wasn't up to par.  I have a test due tomorrow too, so wish me luck. 

This whole experience has been physically and emotionally draining.  As of thus far I do not regret my decision.  I don't want this pain but I keep thinking how hard this would be if I had chemo and possibly radiation while I am recovering from surgery too.  Every day I am feeling better, not a lot, but enough to make a difference and see the light at the end of the tunnel of pain. lol

I have a follow up tomorrow AM, I think I will have some pics to put up of my battle wounds.

Day of Surgery

I had surgery on Friday and it all went well, no cancer was detected!  Now its time to heal. I'm having a hard time going to sleep and getting comfortable so hopefully this post will relax me enough for bed.

The first procedure that was done was the sentinal node injections.  This is what the cream was for! It was a numbing cream to numb your nipples since I would be injected there. Ouch! I had 6 injections in each nipple of a blue radioactive liquid to identify the lymphnode to biopsy.  The needles didn't hurt because I was numb but the liquid was really painful. I took it in stride since that was going to be the less painful part of this procedure. 

After the surgery I was sore which was expected and I felt a lot of pressure.  I didn't realize that adjusting the bed would relieve a lot of that. (Blonde moment) I had morphine that I could press to administer every 15 minutes I believe.  I also had a catheter which I didn't mind at all. There was no way I could get up to go potty! 

Saturday didn't go as well but that is for next post since I am finally ready to relax!

The night before surgery

Like many BRCA + bloggers, this is my open diary of my journey from start to finish.  Those blogs helped me tremendously which is another reason I felt inclined to do the same.  I will also post pictures; those were very helpful to understand exactly what I am getting into and to know there is some normalcy after all of this.  So be warned, if you don't want to see, don't look. 

Since I stayed up late finishing a school paper, its about 9 hours before I have to be at the hospital and 12 until my actual surgery.  Today was my pre-op at the hospital; I registered for surgery and had my tests done.  The tests were pretty simple, blood draw, urine analysis, chest xray, and an EKG.  My doctor had originally advised me to wash with antibacterial soap (Dial) but the hospital gave me some antibacterial towels to scrub all over.  I didn't mind those at all, I am all for lessening my chances of infection!  The Dr. also gave me some cream to apply an hour before my surgery to apply to my nipples and areola to numb them.  This seemed odd to me since I will be knocked out and not feel anything anyway but I will get that done too. 

I have all of the things I will need: my nipple cream, zip up bras, button down shirts, comfy robe, pads not tampons (oh yeah, started my period, SO awesome), I can't forget to remove my toe nail polish; I heard the toes/toe nails help the Dr's. and nurses that my circulation is good.  Glasses on, no contacts in .. yet, and reading materials.  I have to study, do homework, a paper, and a test due within the next 5 days (cross your fingers that I can do that too).

The last nurse that I saw today was telling us (my sister and I) about her family's history with cancer, especially breast and ovarian.  She just kept saying its so heavily in the family that even their pets have cancer.  I'm sitting there with the nurse with 20+ experience thinking - Hello!  What is stopping you from this procedure!  It just makes sense to have a mastectomy so you don't get cancer either!  So even with the depression, anxiety, uneasiness of this surgery I am about to have, I think that there is no reason not to have this done for myself and family.  It just makes sense.