Month: March 2018

As many of you probably saw on Facebook last night I am having some fun with my nerves regenerating after the two surgeries. Since my first surgery my right underarm has been numb. Figured it was a given as that is where the incision was done to remove the sentinel lymph nodes. Last Friday, right past the numb part that extends down the underside of my arm about 4 to 5 inches, it started feeling like I had a rash or something. Irritated. That has gradually gotten worse so that it now feels like that part of my arm is just raw. There is nothing wrong there, it just feels that way. In addition, in recent days my hot flashes are now accompanied with a prickly sensation all over my upper body. Very similar to the feeling I had the last time I was sick from chemo and thought I was going to die.

In the follow up with my Oncology Surgeon, Dr. Ali-Jones yesterday, learned all of this is related to my surgeries and are my surface nerves slowly regenerating from being cut. She suggested I try ice under my arm as this is the most irritating spot and causes me the most discomfort. I tried this last night and it seems to help.

Dr. Ali-Jones also noted how uncomfortable I still was from last Friday’s surgery and asked if I had any anti-inflammatory drugs in my pain relief regime. Told her no, Dr. Goldberg didn’t want me on any NSAIDs. She put in a call to Dr. Goldberg to ask if she could get me some Toradal. (Rx strength NSAID). Dr. Goldberg agreed to the Toradal. She called that into the pharmacy for me yesterday. Hopefully that will also provide some relief of the discomfort I am having from all the surgeries.

I received a couple back up compression bras yesterday that I had ordered thru Amazon. Not quite as tight as the compression bra from the hospital, but will due for now while I wash everything. The surgical compression bra was starting to itch… It was covered in blood spots too. Hydrogen Peroxide took care of all the blood spots on the bra and my tanks. Now I just need for the bra to air dry. Carolyn from Dr. Goldberg’s office said they would order a second bra for me and have it shipped to the house. So far I have not received anything from them. I definitely need to keep a compression bra on, as yesterday when I removed it for my exam with Dr. Ali-Jones and as I was waiting there bra-less with just the drape, it was very uncomfortable, I had to lay down and hold my breasts with my arm to keep them in one place.

I did go to bed quite early. I am sleeping a little better since the Grandson agreed to share my wedge pillow with me. I’ve been able to create a new nest of pillows to prop my arms in a position so they are comfortable so I can stay asleep. I really miss being able to sleep on my side.

The pain meds make me so darn tired. I delayed taking my meds today so I could clean out my email boxes. I also have my laundry I need to check on and fold so Hubby can bring in the basket for me. He was so nice to carry it out to the washer for me this morning. Once I do that, I will take a nice nap.

Life is waiting for my body to heal (and hopefully like my boobs…)

Yesterday morning was my first follow up with Dr. Goldberg.  I was surprised that she wanted me back in her office so soon after the surgery.  I know she had said the drain could not be removed until I was passing less than 30 ml of fluid in a 24 hour period through the drain, and I was not quite there yet.  I think another 24 hours and I would be under the 30 ml limit.  But we went as scheduled.

She pulled off all the tape over the incisions on my breasts and reviewed the fluid output on the drain with me.  She decided to pull out the drain after all.  Hubby had a bird’s eye view of all that was being done.  I asked her and her assistant to lay me down before she pulled out the drain, due to my low BP and extremely sensitive parasympathetic nervous system.  No problem, the exam table I was propped up on was extended and laid back so I would get my head/heart lower than my legs, and she snipped a couple stitches around my nipples and then took off the Tegaderm bandage that was over the gauze and tubing from the drain.  I heard her snip another stitch there and felt a little tug.  She told me to take a deep breath and she must have pulled out the drain as I was looking over at Hubby and his eyes got real big and he went a little ashen.

Dr. Goldberg said everything was healing nicely and she’s never had any complaints about perky new boobs.  She must have seen my face, as I am still not sure about the new boobs.  She continued to give me positive, peppy feedback on how beautiful my boobs look now, and they are a great size for me.  I asked her what size they were; she said she was able to give me a C cup.

She left her assistant with instructions to tape all the incisions back up, and was getting ready to leave us with instructions to come back in a week and a half when she asked if we had any other questions.  Hubby did, he asked her about the hole left by the drain, would that be covered up?  She said that would close up on its own, may even drain a little more fluid.  She could see on his face this was a little daunting to him.  She looked at me and said they could add a dressing to it if I wanted.  I looked at her, then I looked at Hubby, and told her, “He’s the caretaker, if he wants a bandage, then we should add a bandage.”  It’s not like I could see the hole that was left.  Her nurse had no problem added a gauze dressing over my drain hole…

Next appointment is scheduled for April 11, our 23 year anniversary.  Carolyn, Dr. Goldberg’s admin/nurse, congratulated us on that great milestone and set up our next appointment.

When we left Hubby told me he was surprised at how much tubing from the drain was pulled out of me.  He said it must have been curled up in both breasts and coiled up to my ears!  He thought he should have been the one laying down when she pulled the drain.

After we got back home, the Toothless Wonder Cat was waiting for us and wanted to come back in the house, so I grabbed a jar of baby food and sat on the sofa with the blanket on my lap and up he came to eat and then nap.

We slept together for a while, but this was uncomfortable for me, so asked him if we could move to the chaise.  He was a perfect gentleman, he got up off my lap, walked over to the chaise, and waited patiently while I got myself settled and the blanket set before he jumped back up into my lap where we continued our nap together.  Obviously Hubby had seen us while we were on the sofa and snapped a picture of us.  He saw us again on the chaise, but didn’t stop to get another picture as he was headed to the airport to pick up my mom who was stopping here for a quick visit before continuing on to the San Francisco Bay Area for the rest of the week.

Sometime after Hubby left, Toothless Wonder Cat woke up, walked up my torso, and stared at me until I woke up so he could let me know he was ready to go back outside.  That was when I realized Hubby was off to get mom, and I should really wake up.  I was awake and just getting the lap blankets back to their folded places when Hubby and Mom arrived.

I had a nice visit with Mom, sharing stories, knowledge and the morning’s adventures at the doctor’s office.  The Darling Daughter, the Grandson and his cousin/sibling came over a little later and the Darling Daughter cooked dinner for us while the little ones played.  Hubby turned into Grandpa and had a great time playing with the kids.  We have folding tables set up still from the holidays in our back room, and the Grandson has decided this is the place to have conversations with Grandpa.  At one point yesterday, all three of them were under the tables talking about the grandson’s last trip to Knott’s Berry Farm.  His cousin went as well.  They were celebrating another cousin’s birthday.  Grandson told Grandpa that he went on Grandpa’s favorite ride.  It scared him, but he went on other roller coasters even though that one was really scary.   Grandpa asked him if he would go on the big one again, grandson said he would go with him on the big one.  His cousin said she does not like roller coasters, and Grandpa asked her if she liked the rides in Camp Snoopy, she agreed she did like those rides.  Her favorite ride is the Snoopy show.

I love that the Grandson has picked a spot that is his safe talking area.  I think the next time he’s over we should add blankets to his “safe space” so they have a real hide out to have their “talks”.

The son-in-law joined us for dinner, but it was almost time for Hubby to take Mom back to the airport for her flight back to the Bay Area.  She did confirm that due to my Cousin dealing with the death of her father-in-law, that the Passover Seder this year will not be the normal one we have.  The rest of the family will be meeting for dinner together at a restaurant, but no Seder.  Hanukkah will be the next big family gathering.

During diner we did discuss my hair and how it’s growing in.  How my eyebrows are growing in like a teenage boys attempt to grow a mustache, looks like dirt smudged above my eyes; how my eyelashes are little stubs getting longer; how the hair on the top of my head is behind and much lighter than the hair on the sides of my head.  I have a Patrick Stewart look happening.  Mom said she forgotten my birth mark, but it’s still there – that faint red patch on the back of my head/neck.  But at least all the hair growing in is super soft.  Grandson was paying attention to all this banter and I could see he wanted to touch my hair by his body language.  His hands opening and closing, his body leaning forward.  So I asked him if he wanted to touch my hair, he eagerly reached out and started to lightly rub my head, and his hand quickly increased in pressure as he looked at me and said, “I love soft things Nane!”  I told him I did too.  Several times the rest of the evening he reached out to rub my head in passing.

I didn’t show my Mom my boobs.  I thought about it, but I am not sure about them.  I did show the Darling Daughter.  She also tried to keep a positive spin on my new boobs, stating at one point, when I am healed enough from all of this and go back to faire, my new boobies will be wowing everyone when they are in costume.

I am still trying to come to terms with my new perky boobies.  I was having second thoughts the week before my surgery to make these new boobs.  But I knew I made the decision to have my boobs fixed before all the chemo, before the surgery to take out the originally affected area – the lumpectomy.  I was not sure if I called off my surgery at the last minute I’d actually be happy with “Wop-sided” boobs (Hubby’s term).  That is the only reason I went through with the surgery, I had made the decision before chemo brain, and all the emotional strain of getting to this point.  Now I have to come to terms with the outcome.

I know I should be excited about new perky boobs, but I am not.  I liked my old ones.  They were good boobs.  They were comfortable, lived in, used.  I knew them.  I didn’t really choose to have new boobs because I wanted them.  I was forced into this decision.  I was forced to choose between having a disfigured breast that would be three to four inches smaller than the left breast, a constant negative reminder of a loss in my war against cancer, one of the things cancer was able to take away from me; or to pretty up that battlefield, to try and make it a small victory in my overall war.  The one I am currently winning.

I was forced to choose…  I am trying to be excited, or at least accepting.  I know there are so many more women out there who have had to make more difficult choices about their breasts, some who have the choice taken away from them altogether due to complications from surgeries.  I at least had a fairly “easy” choice.  But I don’t think this is an easy choice for any of us.

While I physically heal from these surgeries, from having my breasts restructured so they match and look pretty, and perky, I will also try to heal emotionally from this assault to my body, which has changed it from one I knew intimately to something new.  Come to terms that is OK to have teenage boobs at 53, that I am a survivor and that this was a hard battle to win, changes come with this type of battle.  I can embrace change.  I can roll with change.  I can be change.

I can mourn my loss, I can mourn the changes forced upon me, and I can grow, be stronger, have more empathy for those who face these same challenges, who face their own demons associated with their battles; learn to accept change easier, have more patience.  I will heal, I will mourn, I will accept, I will learn, and I will grow.  But first I will mourn, one more time, for a little bit, then I will be OK with these changes to my body.

Life is learning to let go

Surgery on Friday took about 3 1/2 hours.  I was very shaky after the surgery, and there were some issues with my BP.  My BP is on the low side of normal, usually between 106 – 110 over 68 to 70.  My BP was coming in between 95 to 98 over 58 to 60.  I slept through most of this monitoring and the upping of my saline drip.

The pain from this surgery is different.  The incision in my armpit for the removal of the sentinel nodes last week was very sensitive.  I awoke with this wonderful surgical bra on that holds everything in place while my boobs heal.

I do have a drain from my right breast.  Dr. Goldberg said it can be removed when I have less than 30ml of fluid collect in a 24 hour period.  There were big absorbent pads over each breast in the surgical bra with me.  I did not feel strong enough to get up on my own until after 9 PM Friday night.  Much later than the previous week.

Dr. Goldberg did not come in until after 2pm on Saturday to check on my and authorize discharge.  I was glad to get out of there.  Not that the hospital or my nurses and CNA’s were bad, they are/were wonderful, and most remembered me from the previous week and made a point of stopping by my room to check on me even if I was not their assigned patient.  All asked how my pathology report came out and were so excited for me when I told them it was all clear.  There is just something about being home surrounded by your own stuff.

When Dr. Goldberg came in, she undid the straps (Velcro) of the surgical bra and pulled it down to check on all the incisions.  I had a grand view of my new breasts from the top.  They looked like my 14 year old breasts.  Hubby was surprised at how high up my nipples are now located.  Dr. Goldberg liked the way everything looked and didn’t see any signs of nipple necrosis, so that is a good thing.

She also told me I could shower.  My nursed brought in my discharge paperwork, and once I was dressed away we went.  We ordered GrubHub for dinner – had some Italian food delivered.  I had Lasagna and Hubby had Spaghetti and Meatballs.  Both came with a small salad.  The Toothless Wonder Cat helped Hubby eat his meatballs.

My discharge paperwork stated I can only sleep on my back for the next 4 to 6 weeks.  We went through all our pillows to provide me a comfortable nest to sleep on my back without having my arms fall asleep.

Today I took my time brushing my teeth and eating breakfast working up the nerve to remove the surgical bra to take a much needed shower.

I finally got myself naked and could see there is a lot of surgical tape over all the incisions on my breasts.  And I still have the drain to deal with.  That was interesting trying to shower while holding the drain or propping it on our shower caddy.  I didn’t have the stamina to keep scrubbing at all the purple ink lines over my chest that Dr. Goldberg used to direct what was cut and how much was taken during the surgery.

Even after seeing a full frontal view of my breasts, I am still not sure I like them.  They are very young and perky.  I guess I wasn’t expecting so much perkiness.  I liked my older breasts.  They had a great shape, and yeah, they sagged some, but not too bad for my age.

I’ve had a nap today, and feel ready for another one, but want to be sure I can sleep tonight.  I was awake every few hours last night, and a few times resorted to reading for a bit to help me get back to sleep.

I didn’t put the big absorbent pads back into my bra once I was dried off from my shower.  I noticed I still have a little bleeding from my right nipple.  I now have a blood spot on my bra.  I sure hope the new bra that Dr. Goldberg’s office was having shipped to me arrives soon so I can wash this bra.

I also noted when I was getting ready for my shower that all the steri-strips on my underarm incision and the incision for the removal of my port had been replaced.

I have a follow up appointment with Dr. Goldberg tomorrow morning, and I go back to see Dr. Ali-Jones on Wednesday.  My insurance requires me to have a post surgical follow up with my PCP as well, so I need to get that scheduled.

I need to get some dinner before we invite the Toothless Wonder Cat in for the night.

Life is coming to terms with my much younger boobs

First, some good news about mom, she received a little more information about her cancer; it is Estrogen and Progesterone receptor positive and HER-2 negative.  This is some positive news as it provides additional therapy that can be used in her fight against her cancer and preventative measure to keep it from returning.

She still does not know how aggressive her cancer is, nothing has been provided to her on the grade or Ki-67 factor.  I am almost positive they will do a lumpectomy first and run an Onco test to see if she needs chemo or if radiation will suffice.

One of the things I have not discussed in detail is the damage that is done to your nails from chemo.  I have briefly mentioned the splinter hemorrhages I have under some of my nails, and some of my nails have lifted from the nail beds, some more than others.  My big toes may lose their nails as those are the nails that have lifted the most.   This is one of the side effects of chemo that is not discussed much.

As you can see in the pictures my big toenails are barely still attached to my nail bed.  In the pictures of my thumb and index finger you can see what the splinter hemorrhages look like, and on my index finger you can see where my nail is slowly lifting from the bed.  It creeps down a little more every day.  I purposely did not file my nail down today to show how much it has lifted since yesterday morning.

I am not sure when this effect from the chemo will stop, but this has continued to damage my nails since my last chemo infusion on February 7th – 6 weeks ago.  All of this damage has been after the end of chemo.  It started two weeks after the end of chemo. The effects of chemo continue for long after chemo has ended.

The pictures are not very good, as the nail on my index finger on the left side it down about a third of my nail bed.  I keep my nails as short as I can to try and prevent ripping and tearing.

On a good note, my armpit looks much better now that I have new tape over the incision and I have been able to clean off all the excess bloody glue.

You cannot tell from this picture how much swelling is still happening from the removal of the four lymph nodes.  The surgeon told me this incision would bother me more than the one under my breast, but I still find the breast incision to be the most painful.

The incision where they removed my port is starting to itch, so that is a good sign that the incision is healing.  I wish the skin that was torn by the Tegaderm bandage would heal.  Again the picture does not give it justice, but not only do I have the torn skin from the original bandage, but where I applied the second bandage the skin is still irritated, still a little red.  Dr. Ali-Jones said it would heal soon.  I sure hope so.

I think I am ready for tomorrow, for yet another invasion of my body to make it look more normal again in my battle with cancer.  Make my right breast look more like it used to only smaller, and to make my left breast match the right again.  I will have pain, I will have scars, but I will not have to face disfigurement that would be a constant reminder of my losses in this fight.

Even swollen, I can see how my right breast would look if I was not having “reconstructive” surgery tomorrow to rearrange the tissue to make it look more like my breast used to look.  It would sag more than my left breast, and my skin is too big for the tissue that remains.  As the swelling reduces, my breast be oddly shaped compared to the left breast, it would have an indentation at the bottom.  It would be several inches smaller than my remaining breast.

I must admit, going through another surgery a week after the last one is a bit daunting.  I am beyond relieved that my plastic surgeon has requested an overnight stay for this surgery.  I am relieved that I will be under a nurse’s care the first 24 hours and will have access to intravenous drugs.  Pain from the surgery is shit!  I am not looking forward to the next week or so.  The pain from this last surgery has not been pleasant, and I can only begin to imagine how this next surgery with both breasts involved is going to feel next week.  I already have my first follow up appointment with Dr. Goldberg, Monday at 8:45 AM.  Mom will be here in the afternoon, so I guess this is good timing.  I was highly surprised that she wants me in her office three days after the surgery.

Another good note, looks like my eyebrows are growing back too!  You can see the slightly dark shading from where the hairs are starting to come in a little dark.  Nothing really on the ends of the eyebrows yet, but it’s a start!  I really missed them.  Now if I could only get my own face back. I am tired of waking up to see my brothers face in the mirror….  Ok, little brother, time to trade faces again!  I wish it was that easy.  Another one of those chemo side effects that can take many, many months to go away…  It has been a long haul and it’s been difficult.  I am tired, but will keep going.  I can see the light at the end of the tunnel.

Life is keeping up my positive energy

First the changes; because of how much anesthesia it takes to keep me under my plastic surgeon has changed my surgery to overnight instead of outpatient. This was confirmed today with not only a call from the hospital but a call from the plastic surgeon’s office as well. The time of my surgery has also been changed from 9 am to 7:30 AM. We have to be at the hospital at 5:30 am. I am relieved about the overnight stay, but not so happy about the time we have to be there.
Hubby ran errands today and picked up the signed Percocet prescription from Dr. Goldberg’s office, and got it filled so we have the drugs ready for me when I come home from the hospital this weekend.

Thanks to the wipes that dissolve the run off surgical glue I no longer have all that excess bloody glue stuck to my arm or my side. It’s nice to have that all cleaned off.

Now the news…

My mother was just diagnosed with breast cancer. She wasn’t going to tell me at first. She didn’t want me worrying about her while I went through my surgeries. She had her annual mammogram and they found a spot they didn’t like. She went back for secondary screening. From there she was scheduled for a biopsy. Her biopsy happened the day before my lumpectomy. She has only received preliminary results, it is carcinoma. She spoke with her doctor’s office today and they have not yet received the complete pathology report yet.

She has a 2 CM mass, and she is scared. We had a frank conversation about chemo today. As much as I have written here about my journey, there are still issues with chemo that have not made it to these pages. Things you have to do to prepare, things you cannot do while on chemo; like eat sushi, eat raw fruits and vegetables from a restaurant, or not prepared by your own hand; no manicures or pedicures; no letting your silverware hit the table at a restaurant, must always stay on your plate or a napkin. No dental work during chemo; they want you to maintain your weight – no losing or gaining. For my mom who just started Weight Watchers this was a big blow. She didn’t like hearing any of this, and I don’t blame her.

She is anxious, as am I, to know her complete pathology report. They have scheduled her with a surgeon in a few weeks. She is flying out to California at the end of the week to start a couple weeks visit to family and friends and to celebrate the family Passover Seder. She will be stopping here to see me next Monday.

She is angry. When my journey started months ago, when I told my family I was going in for a biopsy on a lump I had found, she prayed that God take any cancer that may be in my body and give it to her. She says God got it all wrong. I was not supposed to be going through all that I have, and it was her that should have. Now she has cancer and I still had to make this journey.

She was afraid to tell her family. I am not sure why she would be afraid. I told her that the love and support would only help her. I know when I received my diagnosis, I received all the information at the same time. The only thing we didn’t know was my HER-2 factor and if my lymph nodes were involved. An MRI was done the same day and the results from the MRI and the HER-2 factor were both in the very next day. I had so much to absorb and deal with and I was being fast tracked on my journey as my lump was so much larger and I guess much more urgent to deal with than my mother’s. I understand needing time to absorb everything that will now be happening to you. It’s like your body it not your own anymore. I understand taking time to deal with your own emotional state and getting to a place where you can even talk. I asked my family for three days before they called, before they wrote. I needed the time to come to grips with my new reality.

Based on all I have learned through reading, searching the web, and my support group, the fact that mom has been scheduled with a surgeon first seems to me she may be able to have a lumpectomy and just radiation. I hope that is all she will have to go through. They will do a full pathology on her lump and determine from there if chemo is required. Its small still 2 cm, I have hope that she will not have to go through everything I have gone through. Not that I don’t think she could handle it, it’s more that I don’t want her to have to do all of this, go through everything I have gone through. I know my brother and sister-in-law would be there with her, helping her every step of the way. I just want her journey to be a little easier than mine has been. I want her to see the light at the end of her tunnel much sooner than I am seeing the light at the end of mine.

Life is filled with curveballs

I slept in this morning, easier to sleep through the pain than to wake up and deal with it. Slept until 10 AM. Sometime during the night the tape over my underarm incision twisted at one end and stuck to my arm. As I raised my arm up to start my morning routine brushing my teeth before my shower I ripped the tape of about an inch off the end of my incision. Ok, no big deal. Went to hubby and had him cut off the end of the tape that had become dislodged, and finished my mourning routine. After I showered and was drying off I noticed an end from a suture sticking out. Ok, that was not good, as all my sutures were sub-dermal. I went to hubby to have him look at it to make sure I was seeing this right. Yup, he agreed and he said he could see a gap starting in my incision.

As soon as I was dressed and ate a quick breakfast I called Dr. Al-Jones office to let her know what was going on and to find out if she wanted me to come in or not. Yes, I was to come in to get that wound redressed.

Also after my shower I noticed that all the stubble I had left from when I started chemo is all gone now. I only have the fine fuzzy new growth on my head. I also noticed my pubic hair is starting to grow back in as well. I didn’t really see any other new hair.

I did pull off the waterproof bandage from the incision where they removed the port. I have another raw spot from the first bandage applied in the OR. I had covered it up when I replace the original bandage with the replacement after my last shower. Today I was able to remove the waterproof bandage and keep it off, so that raw spot was finally exposed to air and let itself be known to me. So bacitracin applied and now I just have the steri-strips over that incision.

Dr. Ali-Jones had me come in and her nurse took a quick look at what was going on under my arm. I told her about the overflow glue and how I could not get it off. No problem she said, she gave me some wipes to use at home that will take off the excess bloody glue that is all over. Sweet! Dr. Ali-Jones came in and looked, she peeled the old tape off my incision, pulled the end of the suture that was sticking out and closed up the gap that was slowly getting bigger; added more glue to the incision and then put steri-tape over everything. Good as new.

Then she told me she had planned to call me today as she had the pathology report. Since I had to come in, she decided to share it with me directly.
She miss-spoke on Saturday when she said she removed three lymph nodes. She removed four. All four were clear. Blink was originally 31 mm x 32 mm x 28 mm, based on the MRI, which has the most accurate sizing. Dr. Ali-Jones removed an ovoid section of my breast including the wire that marked the center of the original tumor. The ovoid measured 11.2 x 7.2 x 4.0 cm. All this in inches as I am sure most of us are used to dealing in inches is 4.41 in x 2.83 in x 1.27 in of my breast tissue removed.

This lump was sectioned into 17 slices. At first they did not find the clip, but when they radiographed all pieces, they found it in section 5. All sections were clear of cancer. They said the current specimen showed no residual invasive carcinoma. They did see marked fibrosis and histolocytic infiltrate, compatible with therapy related changes. This is considered a complete pathologic response to therapy. Which means the chemo kicked the cancers ass and wiped it out. The cancer cells died and collapsed in on themselves creating the fibrosis and histolocytic infiltrate.

I am cancer free as best as we can tell at this point. Friday, I get my new boobs and from there I have my follow up with both surgeons and my oncologist. I am not sure if this means I still have to go through radiation. I will find that out when I have my follow up with the oncologist in April. I will still need to heal from the surgeries.

No group tonight, hubby does not want to take any risks with my recovery. He worries that too much movement is not good for me or my recovery. He hears how much I moan and groan at night turning over. I did call into the Cancer Support Community to let my group leader know I would not be there, but my pathology report was clear. She can pass that on to the group.
Hubby asked if I wanted a celebration dinner. I told him I would really love a steak and champagne for my celebration meal, but that is not happening yet. So no celebration meal until I can really celebrate the way I want.

I also received more flowers today! Yesterday I received flowers from my mom; today I received two dozen roses from hubby’s cousin and his family.

 

 

 

 

 

 

 

Life is waiting to celebrate all my good news

I spent most of yesterday sleeping.  In between sleeping I showered and managed to get some laundry done.  The Toothless Wonder Cat followed me inside when I headed out to the garage to transfer my clothes over to the dryer and grab the towels I had washed.  I thought maybe he was hungry and set out the food he didn’t eat in the morning, but he was having none of that.  He went to the sofa and waited for me to sit down and put a blanket over my lap so he could nap in my lap.  Hubby found the two of us sleeping on the sofa with the basket of towels waiting to be folded and put away…

The cat was not interested in going back outside at all yesterday, and even slept on the chaise when Hubby thought for sure he would go outside for a while.

 

 

I did notice that my neuropathy was not bothering me nearly as much since I had my surgery.  At first I was thinking the acupuncture was helping, but then I realized it was probably one of the drugs I was taking for pain control.

This morning I woke up and the pain was not as bad as it had been so opted to not take the Percocet or the Toradal this morning.  I am still a bit sore, so have not rushed anything, didn’t take my shower until almost 2 PM, but I did shower.

I can really see the swelling today as it is more local to the incision areas.  I have about a 3 inch incision in my armpit where they took the sentinel nodes.  It is stitched under the skin and glued then taped over the incision outside.  They must have moved my arm down as soon as they were done as I have a line of bloody glue stuck to the underside of my arm.  Most of my armpit is numb to the touch, but it’s still very sore.  It’s a weird feeling to describe.

Where they took out my port it is closed up with steri-tape with a piece of gauze over it and a waterproof Tegaderm bandage over that.  They didn’t take into account gravity when they placed the Tegaderm over 

everything, as when I took that bandage off yesterday after my shower, to replace with a new bandage, I realized the weight of my left breast pulling the skin down had caused a raw edge to be created on my skin.  I placed the new Tegaderm bandage horizontal instead of vertical and have been putting anti-bacterial cream on it to protect the raw skin and hopefully keep it from getting infected.

I have a 5 to 6 inch incision on the bottom side of my right breast right against the chest wall.  This is also stitched underneath the skin with glue and tape holding the skin together.  I had a drop of bloody glue run down my side.  I have been slowly picking parts of that off as it’s not very comfortable.  I have some really bad bruising under my breast and the whole bottom part of my breast is numb.  I can see the mark where they originally tried to insert the wire to mark were the “marker” was left, but I have not found the mark where the wire that was used was inserted.

I did call Dr. Goldstein’s office today to let them know two things, one the incision I was expecting was not what I woke up with.  No worries, Dr. Goldstein and Dr. Ali-Jones would have discussed this and Dr. Goldstein can work with the incision left by Dr. Ali-Jones.  The second item was the fact that Dr. Ali-Jones was glad we had received pre-authorization for an overnight stay in the hospital due to the amount of anesthesia it took to keep me out, she would have requested an overnight stay at that point if it had not already been authorized so they could keep an eye on me overnight.  Dr. Goldstein’s office said they would work on getting a pre-approval for overnight stay for my surgery on Friday.  Having that information helps them get the approval from the insurance company.  And Hubby is really worried that he is not able to care for me those first 20 hours or so by himself.  He saw what I was like Friday night with the nurse and Darling Daughter taking care of me.  I could see he was very worried.

All day today the soreness has slowly been getting worse, but nothing I cannot live with.  If I sit still it hardly bothers me at all.  I think to sleep tonight I will need to take the drugs.  My neuropathy has gradually been feeling worse all day as well.  Definitely one of the drugs helping relieve the neuropathy sensations.

My mom sent me flowers today, and we happened to be on the phone when they arrived.   Mom will be here next Monday to visit for a bit on her way from visiting family in Arizona to visiting family in the San Francisco Bay Area since I cannot go for the family Passover Seder.  I think the Darling Daughter will come over as well since she has decided to not go to Family Passover as well since we’re not and her brother cannot get the time off either.   She hates making that drive alone.

I will definitely be needing drugs to sleep tonight.  As I sit here typing the pain has gone from a very minor ache to a dull throbbing.  By the time I’m ready for bed I can just imagine how it’s going to feel.

Life is hoping for pre-approval for overnight stay on my next surgery

So yesterday was my needle/wire guided lumpectomy, sentinel node mapping and removal and Portacath (port) removal. The day started out at the Breast Diagnostic Center to have a needle/wire inserted into my right breast to show where the marker was left when they did the biopsy last September.

I checked in about 7:15 AM, and we waited and waited, and waited some more. Evidently there were three patients booked at 7:45 AM (you have to check in 30 minutes prior to your appointment) and there are only two mammography rooms for this procedure. Since the other two women had surgeries scheduled at 10:30 AM and mine was scheduled for 11 AM, I got to be last for the wire insertion and the tracer injection for the sentinel node mapping.

I was finally called back over an hour late to go through my procedure at the BDC. I warned the doctor and the nurse who were doing to wire placement that I have a very sensitive parasympathetic nervous system. I already deal with BP on the low side of normal, but when my body thinks something should hurt, even if it doesn’t, I go into shock.

We started the procedure to place the wire, at first they were going to have me sit on a raised chair so they could place my right breast in the mammography machine with a special paddle attached with a hole in the center of it so they can numb my breast and then place the needle once they have the location of the marker. Then the doctor called into the room to tell the nurse to set it up for me standing and they were going to go through the bottom of my breast as that was the shortest distance. Because of my neuropathy I can only stand still for about 5 minutes, and then I start rocking on my feet to relieve the prickly numbness. They had me sit until the very last moment and then I stood up against the mammography machine while they placed my breast between the modified paddle and the backing plate. Now the movable plates on the machine are upside down so the nurse and the doctor are working from underneath my breast.

Once they have my breast placed optimally for wire insertion to the marker they leave me squished in the machine while they then wash the area for the insertion site with Betadine, then the doctor numbs the area with Lidocaine, and then the wire is inserted with part hanging out of breast. Once this is done, they run another x-ray to make sure the wire is lined up right at the marker.

I did good until the “final” x-ray showed they didn’t have the wire placed correctly, it had missed the marker. It was the second attempt to get the wire exactly to the marker that my parasympathetic nervous system kicked in and I started going into shock. I told them I needed to sit down and the both looked up at me and quickly removed the wire and had the normal chair pulled over for me to quickly sit in and get my head down past my knees. They had ice packs ready to place on my chest and the back of my neck. They also called in another nurse the one of the breast cancer advocates to help monitor me as to when I would be ready to try the wire placement again.

Sitting wasn’t doing the trick, so I told them I needed to lie down. They had a blanket ready for just such an emergency and helped me down and we had my legs up on the chair. They kept checking my BP; it finally was getting back to my normal range of 100/65. They decided since I have no control over my BP once this happens and the neuropathy in my feet, to go in from the side of my breast even though it’s a longer distance to the marker, I could sit in the chair and they could work from the side instead trying to place the wire while sitting on the floor. Second attempt while I was sitting in the chair was a breeze. Then they injected the uptake tracer into my breast right behind my nipple. No numbing for that and that hurt. Again I started feeling light headed, nauseous and clammy. Back to the floor I went, but it only took a couple minutes for me to feel and look normal again. In the meantime one of the nurses called over to the hospital to let them know I would be running a little late.

They placed gauze and a clear Tegaderm Film over the wire sticking out of my breast and had me put my top back on so I could be shuttled over to the hospital. They had an escort for me, who accompanied me back out to the waiting room so we could meet up with Hubby so he could follow us across the campus to the hospital, he could park and then my escort would wait for him to enter the lobby so she could direct him to admitting where I was waiting.

I was pre-registered so I only had a couple forms that needed signing at Admitting, and as soon as hubby was there they escorted us to the waiting room for pre-op and family members wait for news of patient in surgery. Didn’t take long before they called me back to start prepping for surgery. Hubby cannot come back to sit with me until the IV is placed. I was taken to a curtained off bed in this long ward of pre-op and some post-op patients. They take my vitals, have me undress and get into a gown, settle me in the transport bed, cover me with a heat blower attached blanket to keep me warm and we start going over my medical history and ask questions about my allergies.

I’m not necessarily allergic to meds, but some meds have bad interactions with me – Vicodin – makes my heart and brain race while my body feels like it can’t move. It’s not a pleasant sensation and I cannot sleep, so no Vicodin for me. Also Zofran an anti-nausea drug, it makes me retain water so badly I stop urinating. They immediately called the anesthesiologist to come speak with me as General anesthesia does make me nauseous when I am coming out of it.

The nurse assigned to start the IV catheter came in and said this one would have to be in my left hand since the majority of the work was being done on my right side. She was good, she had everything prepped and had me hang my left arm over the side of the bed while she got on the floor to access a vein quickly. It was done before I could blink twice!

Dr. Ali-Jones stopped by and we chatted about the surgery, as well as the lymph nodes. I told her I had heard about the recent study results about 2mm or less cancer legions in a sentinel node did not warrant further axillary dissection. She agreed with me, not worth the risk of nerve damage and lymphedema.

Hubby was brought back and I told him Dr. Ali-Jones advised surgery would take about an hour and a half. Not the two to two and half I was originally told by her staff. Then the Anesthesiologist arrived and we discussed my severe motion sickness from a general anesthesia. He asked me if I’ve had scopolamine patch before. Nope, so he had one applied. This would be injunction with Compazine administered through the IV. Once that was completed they were ready to wheel me into the OR. Hubby kissed me goodbye in the corridor where he headed back to the waiting room and I was taken to OR.

No problems with transferring to the OR gurney and everyone in the OR was impressed at how smoothly I made the transition look. I was out in under 5 minutes.

I don’t know how long I was in recovery, a little over an hour maybe before I was actually able to be awake enough for them to bring Hubby back to sit with me while we waited for my room assignment for my overnight stay that the surgeons office was able to get approved by my insurance company. I was starting to feel pain right before Hubby was brought back, so my recovery nurse administered more pain relievers. I was nice and high and in no pain.

Dr. Ali-Jones had stopped by recovery and told me what she had relayed to Hubby, but I honestly don’t remember much. She did tell me that the second dye she injected prior to surgery to complete the sentinel node tracing is blue and is processed by the kidneys so I was not to be alarmed when I pee blue to even green urine for a few days.

I had a room assignment before hubby was even brought back to recovery. So he didn’t have to wait very long before I was being taken up to my room. Mostly uneventful night, and I am glad the surgeon’s office was able to get the approval as I don’t think Hubby would have managed so easily how much help I needed dealing with pain and going to the bathroom. It’s not his forte being a nurse, and I was very out of it and needed lots of help getting up, pulling down my underwear, having someone steady me on the short 3 step walk to the restroom. It wasn’t until this morning that I felt strong enough to get myself and the IV pole maneuvered into the bathroom and I still needed help with pulling down my panties to pee if I was at the end of the pain control cycle.

Hubby stayed until about 7 PM, then he went home to take care of The Toothless Wonder cat, who was missing me. Darling Daughter had come over to visit with me and arrived before 5 PM bearing gifts of really soft, squishy socks. She stayed until almost 9 PM and helped me to the bathroom several time during her stay so I wouldn’t have to wait for a nurse or nurse’s aid.

This morning Dr. Ali-Jones came in and said she was glad I had the overnight stay as they really wanted to monitor me closely because I took a much higher dose of anesthesia than most people to put me under. She would recommend I advise any future surgeons of this problem so they can schedule inpatient surgery. I’ve known I have this problem of needing higher doses of anesthesia; twilight drugs and pain relievers as most standard doses do not work for me, but no one has actually said they recommend a hospital stay even for what would be considered out-patient surgery.

I was released to go home shortly after her visit. She did tell me only 3 sentinel nodes lit up with the tracer and no cancer found in them. They did a quick scan of some of the edges of the removed breast tissue and no cancer cells were noted in the scan, so she anticipates the pathology report will come back clean as well, and I should not need any additional tissue removal. She did say she should have the pathology report for all the tissue and all margins by Wednesday and she will call me. She also told me she left a big “hole” in my breast and part of the healing process is for that hole to fill with fluid. If I hear sloshing coming from my right breast, this is normal and I should not worry. I have a waterbed for a boob…. 😀

I did notice this morning the swelling in my breast has gone down a bit, and I can already see the size difference in my boobs. Even in my spandex tank tops that squishes my boobs down.

Hubby arrived with my “tea” (Hot water, Lemon wedge and Honey); he is so good to me! I told him I was being discharged shortly. Nurse wanted to get my last round of pain meds in before she pulled my IV, and while I got dressed she printed up my discharge paperwork.

I’ve been sent home with prescriptions for Toradal and Percocet for pain management and swelling control, as well as a stool softener to try and keep me from becoming constipated from the Percocet.

All my nurses and nurses aids were wonderful. We were home before 11:30, even with stopping at two different pharmacies to get my drugs. First one didn’t have the Toradal and Percocet in stock. They could get it for me by the end of the week. Ummm, that won’t work, I am fresh out of surgery and that is what the drugs are for. We had to head to a second pharmacy to fill the Rx’s.

Now I am ready for a nap. I slept OK last night, but not the greatest. When the pain meds were starting to wear off about 45 minutes prior to my next scheduled dose it would wake me up. Then there were all the trips to the bathroom, which my night nurse – Ariana, commended me on how much water I was drinking without them even having to remind me. The saline solution for my IV was an extra slow drip so most of what I was eliminating was from my intake. After my last pre-midnight infusion of meds, Ariana unhooked the IV lines so I could move about easier when it was time to go to the bathroom.

Monday I will call Dr. Goldberg’s office and advise them what Dr. Ali-Jones said to me about the anesthesia and to see if that will be good enough to get approval from the Insurance company to authorize an overnight stay instead of outpatient for next Friday’s surgery. That and Hubby is worried about trying to care for me at home with what he saw yesterday afternoon/evening.

Life is waiting on the pathology report.

So yesterday I allowed myself to be afraid, and cry, and spent hours talking about my fears with hubby. I also had my pre-op meeting with the plastic surgeon yesterday to finalize paperwork and she could outline and notify my oncology surgeon how to cut on tomorrow’s lumpectomy so I am well prepared for next week’s fix it up and make the left one match surgery. I had to sign a whole lot of pages of disclaimers and descriptions of risks and possible complications that could happen from my mammaplasty (breast reduction on left side). Once I finished that and then had to go over the possible complications of the restructuring of my right breast to make it look normal after tomorrow’s surgery, Hubby has decided I will not be going anywhere other than follow up appointments for the next three to four weeks.
When Dr. Goldberg was drawing on my right breast where she wants Dr. Ali-Jones to cut for the lumpectomy, she started with a half circle the followed the bottom half of my areola (a nice purple line). Then she stared at it a bit and said, that might not be big enough, then drew a line down from the center of the arc to the bottom of my breast. I must have had a look on my face, scared, stricken, maybe my eyes got wide, because she than grabbed about a 1/3rd of my breast at the bottom and said this is about how much Dr. Ali-Jones has to remove Friday. Do you have a preference on your final cup size?

Ummm, wow, I knew a large chunk was coming out, but that really added some perspective as to how large a chunk of my breast was being removed. When I just kind of looked at Dr. Goldberg, she said she could make me a nice B cup or she even thinks she can leave me with a C cup. My response was let’s try for the C cup please. Going from E cup to C cup will be quite a big difference to deal with, I am sure waking up after the surgery on Friday is going to be just a bit of a shock.  They will also be ordering a specific type of sports bra for me to wear for a minimum of 6 weeks during my recovery.  We did ask about the whole underwire thing and Dr. Goldberg said once I am fully recovered I can wear underwire bras all I want.  Next I will have to ask Dr. Ali-Jones.

I face possible infection, excessive scarring, loss of some sensation to all sensation, nipple necrosis, discoloration, excessive bleeding, hematoma, excessive swelling, poor wound healing, and breast asymmetry among a long list of possible complications. Nothing is guaranteed as to the final outcome on how well the two breasts will match. Oh, and just so you know, if any corrections are needed due to complications, insurance may not cover the costs. Nice!

We talk about the pathology report and what happens if it comes back positive for cancer cells in the margin. They are generally looking for a 3mm margin all around. If the report comes back that the margin is not big enough and Ali-Jones decides a little more tissue needs to be taken, Goldberg says that can be done at the same time as the restructuring and reduction. If it comes back that there is no margin then I will most likely have to go back in for a mastectomy. If that happens, Goldberg will place an expander in my chest and we will regroup after I am recovered enough from the mastectomy and discuss rebuilding options.

I was provided with prescriptions for a pain reliever (narcotic), an antibiotic (Reflex), an anti-nausea drug (Reglan) and Xanax for anxiety. Dr. Goldberg forgot to sign the Rx slip so the pharmacy could not fill the pain reliever (Oxycodone). Hubby will have to go back to Dr. Goldberg’s office next week to pick up a new Rx for that.

I made dinner tonight so I have some good food to come home to on Saturday, if Hubby doesn’t eat all the leftovers before then. I made Garlic Mashed Potatoes, Polish Sausage with sautéed onions and peppers and Sauerkraut.

I will pack a bag for Hubby to bring up once I have been taken to a room after surgery tomorrow. I need my pills, a toothbrush and some stuff to help me while away the time I spend tomorrow afternoon/night in the hospital.

I think I am ready for this. My dragon is doing loops making me feel like I shouldn’t have eaten dinner after all. Maybe I should take one of the Xanax tonight…

Life is trying to keep the anxiety dragon at bay

 

Tastebuds continue to improve; I can now taste all dairy I’ve tried so far almost normally.  For a long time dairy tasted horrible on my tongue.  I knew what it should taste like and what I tasted was NOT anything close to what it should have tasted like.  So this is a HUGE improvement.  Fuzzies continue to get longer and more growing in daily.  Not so much on the top of my head, all around the sides, peach fuzz back on my face (I was really hoping that would not come back…) and some on my arms, and in the nether regions.  No leg or armpits yet, and nothing to be seen of my eyebrows or eyelashes.  My nose is not running like a leaky faucet anymore, no only if I am walking outside or extra active.  Same with my eyes, so that is a great sign.

I am trying really hard today to concentrate on the good signs.  Last night was group and my surgery was discussed again.  I didn’t bring it up, I thought I was all good and reconciled with this surgery, and the “reconstruction” that will happen next week.  When I was asked about my surgery and how I was feeling I was all good.  When the group wanted me to go over again what is happening and I told them about a conversation I had with my cousin about starting up a bra exchange for breast cancer survivors, about posting “Hey, I have some barely used 38E’s up for grabs, anyone have…”  that type of thing.  We all laughed thought it was a great idea until one of the gals who is finished with all her treatment (but not all her reconstruction, she needs a couple more surgeries to correct issues she’s had), advised us that once you have surgery you cannot wear underwire bras again, ever…  What?

So that opened a whole new dialog, and everyone who’s gone through surgery, lumpectomy to mastectomy all agreed, they have all been instructed to never wear an underwire bra again.  When I asked them not even after a year or so, allowing all your tissues to heal from the surgery(ies), our group leader, who is a 6 year survivor, said her surgeon stated underwire irritate the breast tissue too much and can create new lumps in the tissue and they don’t want any lumps created, benign or not.

For those of you who have not read the first post of this blog (or don’t remember the info provided in the first post), I have been wearing underwire bras since I was about 16, when I started buying them for myself.  I really liked how they support my breasts and how they make them look.  Elastic band only bras always slid up my breasts and they looked funny in the cups, not natural or even well shaped.  Ok, I figured I’d need to wear spandex tank tops again or sports bras after surgery, for a while everything healed, but the no underwire ever was something new.  Ok, this was all new information for me to take in.  I was ok during group.  We talked about all sorts of things and even had show and tell with my head.   One gal, who just completed her 3rd of 6 chemo treatments (once every 3 weeks), opted to not shave her head when her hair started falling out.  She says all her darker hairs have remained so far.  We talked about how not all my “stubble” fell out once I was done with my chemo pattern baldness looks (remember these photos:)

 

 

 

 

 

 

 

 

 

 

 

 

So she got to see and rub my head last night to feel how much stubble was left on the top of my head. Once she rubbed, everyone wanted a rub, so I walked around the room giving everyone a chance to touch my head and showed them all my pictures. We also talked about how my eyelashes and eyebrows didn’t fall out until the end.

There were other discussions, and our time ended all too soon. When I met up with Hubby after the end of our groups we shared our group discussions on our way home. When I told him about the whole bra thing, he made the statement that my boobs would not be the same after Friday. They will be different, and everything will be alright. I’ll figure it out.

That statement of my boobs not being the same again hit me hard. He was right, as much as I have been trying to be excited about new, perky, 20 year old boobs, I’ve been hiding from the truth. I am terrified of new boobs. I don’t want new boobs. I want my boobs, the ones that breastfed my babies. The ones my husband had fondled when we’re intimate. The ones he secretly caresses in public because he can, and then quietly boasts to me that he has done this intimate act. I am mourning the loss of my boobs, because hubby was right, they will never be the same again. I have to start a whole new relationship with my breasts, and it seems overwhelming right now. I am a 53 year old woman, and I am terrified I will never be me again after Friday. I know that this is stupid and I am wallowing in my fear, and I am better than this. And yet I wallow, and it all started with that one little statement. And I don’t want hubby to know that I was ok until he said what he said. In his group (family and caretakers group), they talk about how you should not say “it will be alright (or ok)” and “don’t worry about it”. I told him if he didn’t say these things to me I would think something is wrong. I just don’t have the heart to let him see he has sent me into a tailspin by saying something else while trying to help me with my dismay over a bra.

I have two days to get myself back together. I cannot go into surgery with this fear hanging on my heart, constricting it to the point that it backs up tears into my eyes and down my face.

Part of my fear is intimacy – sex. There has been none since chemo started. You cannot have any exchange of bodily fluids while on chemo as you can pass the toxic chemicals to your partner. I am sure hubby is waiting for me to say I am ready, but I am afraid. I have no pubic hair, would hubby feel weird about being intimate with a “naked” me? I have no idea what else chemo has effected down there… what if I am “broken” in my vagina? What if it doesn’t work they way it used to? What if it hurts now? I’m afraid to try. And being afraid to try, doesn’t that mean I am broken now? I don’t feel sexy right now. I feel bloated and hairless and everything but sexy. How would he even want to get naked with me? Then after Friday we throw in new boobs, how do I even do this?

So, there you have it. The mess of my brain and heart, still happening 6 months into this journey, and this time it really comes to the forefront because of a stupid bra. Making me face fears I’ve been hiding from.

Life is facing our fears (whether we want to or not…)