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#61 Another Revision!

Well, my surgery went well…the left breast implant was removed along with all the excess radiated skin……so much for a “skin sparring Mastectomy ! I feel I should have blogged earlier but I kept thinking, I will blog after this post op appointment. However to date I have had three follow-up appointments. My surgeon kept my drainage tube in for two weeks because at my first post op the daily fluid output was more than 25cc’s.

On April 16th, I had my annual Bone Density and a CT of the lungs for that little nodule that the doctors have been monitoring. Well GREAT news, my Oncologist, Dr. Ho from the  Palm Springs Comprehensive Cancer Center told me that the nodule is stable and has not grown, he will continue to monitor it annually. And my DEXA (Bone Density Test) is also good…I was so happy with that news!

On April 20th, my sidekick (drainage tube) was removed. However that week my incision where it all joins started to seep and open! REALLY could this possibly be happening again! My Plastic Surgeon wanted me back the following week to keep a close eye on it. Which that appointment was just last week on April 27th.

I would like to back up to April 25th. On the 25th, my husband and I celebrated 31 years of marriage! I love you Jack with all my heart, thank you for always being there for me, for accompanying to all my appointments when work permitted….my story is not over, I am looking forward to many years with you, looking forward to our week on Maui!

Ok, back to my appointment on the 27th. After Dr. Eko looked at the area he looked at me and said that he would need to do Another Revision. At this point, seriously my heart just sank! Of coarse I asked exactly what he planned on doing, Dr. Eko went on to describe the procedure. My husband and I waiting in the examination as they prepared the Procedure Room for me.

After administering plenty of Lidocaine he removed select staples in the trifurcation area. (I will be posting pictures, just do not scroll down if you do not wish to see them.) Slithers of irradiated skin was removed, then it was sutured. It was surreal, the area was well numbed up, but thru my body I could hear and feel (without pain) every stitch! My body was shaking uncontrollably, they covered my with a blanket….this was a pretty invasive procedure done in the office…my plastic surgeon and his wonderful M.A., Angelica made sure I was comfortable. My husband was in the room, a couple of times the blanket came off my feet and he tucked the blanket under my feet. It was nice having my husband in the room, Dr. Eko played smooth Jazz during the procedure, which was also very relaxing.

What’s next? I had a follow up appointment today April 30th, it went well. I am instructed not to lift my left arm above my head so the it doesn’t tug on trifurcation area. The doctor (and I) want this to heal!!! My husband and I will be going to Maui for one week, I will not be getting in the ocean, other than my feet….just plan on relaxing and visiting my Maui Ohana!

Microblading, on Wednesday May 2nd I will be getting my eye brows microbladed. Yes, the hair on my head has returned post chemo, however I have little to no eye brows! I will have to wear a hat while in Maui, which I’m okay with…just looking forward to not having to paint on my eye brows every morning to look normal! So grateful to the gals from the Cos Bar in Wailea that took the time to teach my how to apply my Tom Ford Eye Brow Kit.

 

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On a daily basis my family stripped and documented the amount of fluid out put for two weeks until the drain was removed. Post op, my son Cisco took days from work and stayed home with me… he did really good, he only gaged once when some fibrous tissue was in the fluid!

 

 

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Damm, It looks like I had a “Radical Mastectomy”!

Here it is, I struggled with the decision to post this picture ….. but this is the reality of it. The Implant was removed with all the irradiated skin. Looking at the picture above my head is to the right with the tube going down. The stapled area that goes  up towards my axilla (armpit) is that darken circle that is seen on the first picture… that skin was removed, hence this result. The following picture was taken on April 27th, you will notice that the staples where it all trifurcates are gone. That is because on April 20th the plastic surgeon removed them, at this point they were  obviously just irritating the area. The area didn’t close which is why Another Revision was necessary. IMG_6071.jpg

I don’t have an after picture of the revision…my husband says it looks good, he has been doing the dressing changes, he has become quite the wound care specialist! I have instructions not to lift my arms above my head

My next follow up appointment, is on Monday April 14th. I will keep everyone posted with a shorter blog……I promise. If you have read to this point, many thank yous for taking the time out of your day to read my blog.

Pina

 

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#60 Mutated Gene and Plan B of Reconstructive Surgery

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My Hyacinths in full blossom

 

This blog will cover two topics, first I will discuss the “Mutated Gene” topic.

On December 20, 2017,  I received a phone call from my Genetics Counselor from Queens Medical Center, Oahu Hawaii. Allison was calling me to  inform me that one of my genes that was previously tested had been reclassified. Genetic result: Positive – Clinically Significant Mutation Identified ! Yes folks, I have a “mutated gene“……add that to the bucket. This mutated gene is the CHEK2 gene, which is for both Breast Cancer and Colorectal Cancer, (as if I didn’t have enough to worry about) My job was to inform my siblings, as they have a 50% chance that they inherited this mutated gene as well. If they test positive and their kids (my nieces/nephews) can be tested, however their risk factor is 25%, that they inherited this gene. I was provided with test results and information to pass on to my siblings should they choose to test, also my children (if they opt too) can now be tested. These blood test are extremely costly, someone without a first degree relative testing positive would have a difficult time convincing an insurance company to run and pay for this blood test, which also involves an office appointment with a Genetics Counselor. The fact that my sister and I were diagnosed within weeks of each other warranted my insurance to pay for my test.

And now on to topic number two:

The removal of my bilateral expanders and placement of the implants surgery happened on February 1st. Going in,  I knew, because my plastic surgeon was extremely thorough in explaining ALL scenarios that statistically I had a 35% chance that my irradiated tissue would not take well to the implant surgery. During the implant surgery the excess tissue was removed, before cancer I was a natural DD cup, now I am down sizing to a full “C”. Well this surgery was a little too traumatic for my irradiated breast tissue. Initially it appeared to be healing just fine, every day was better (even with a broken toe).

I think right now would be a good time for me to insert my disclaimer. ” I will be inserting sensitive pictures with this blog at the bottom of this blog, if you do not wish to look just scroll slowly I will tell you when to stop”

The Right side is healing just fine without any issues. But remember the right side did not have cancer, I had a mastectomy as a preventive measure on this side. My follow up appointment on February 21st with my PS went very well. We did discuss nipple options at this appointment which I will save for another blog. The a couple of weeks later I had Jack take a picture for me, I still had visible discolored areas (like bruises) which was normal. However, come March the darkened areas began to get larger. I did not have “pain” associated with the darkened areas….the area is numb like due to the mastectomy. Kind of like “Neuropathy of the boobs”…if that is such a thing. I had a couple of areas, actually three, that the scab fell off then appeared to be opening….and oozing (lymph and blood, not puss).  What the Heck!!!! My next follow up at this point was March 19th, which was the next week. My husband tells me not to wait and call my Surgeons office. After a long day of surgeries my Plastic Surgeon Dr. Eko offered to meet me at his office at 4pm. I drove myself to this last minute appointment…..I knew the darkened skin was not good, nor my new little peep holes! We talked about “implant failure due to irradiated skin” and that 35% bracket that he believes I was falling into. He ended up doing a “Revision” in the office, in which he cleaned it up and sutured it…..again. With the help of my friend Lidocaine and my PS’s gentle touch, I didn’t feel a thing! I went back the following week,  March 23rd to have those stitches removed…however it was obvious at this appointment that the openings were not closing up! The stitches stayed in and doctor extended my prescription for antibiotics and extended me one more office visit before making the decision to remove the left implant…..That appointment was yesterday March 30th.

The verdict is in, I am scheduled for surgery April 4th, to have the Left Breast Implant removed. Implant failure due to irradiated skin does not mean the end of reconstructive surgery for me, just means that “Plan  B” will now be the options for me. I briefly discussed plan B on a previous blog, blog number 52&53. However, after the implant is removed we will wait six months before determining which Autologous of Flap Reconstruction option I will have.

I realize this turned out to be a very long blog…thank you for reading to this point, I truly appreciate it. For those wondering why I would post sensitive pictures of myself? To reach out to those just starting their BC journey, to educate, I have lots of people reading my blog that are not related to me, one person from Spain, someone from Europe and Australia……….reconstructive surgery can go smoothly with out hiccups, or it can take multiple surgeries…just want you to know it’s not all Hollywood and Glamour.

******************** STOP HERE IF YOU DON’T WISH TO SEE PHOTOS******************

 

 

 

 

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Right side healing accordingly the scar wraps around to the cleavage area

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Left side Feb 24th, healing nicely with slight briusing

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Left side March 3rd, at this point one obvious opening, more discolorisation

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Revision March 14th

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March 23rd, Radiated skin is not healing shut, darkening of skin more and more evident

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52 & 53: Reconstruction

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I’ve never been one for selfies but I wanted to share how much my hair has grown and how curly it is! My hair BC (before cancer) was curly but not as curly as this…. I will take what I get as some women that were given Taxotere are not getting hair growth back.

June 20th marked one year since my last Radiation Treatment, I had a total of 29 rounds to the Left chest wall at The Pacific Cancer Institute on the island of Maui, from May 11th to June 20th. The plan all along has been to do delayed reconstruction. My team at PCI thoroughly explained skin care to me which I followed to a tee. The week after I started Radiation treatment I was referred to a physical therapist for John Barnes’ myofascial release technique massage. I saw my therapist twice weekly thru the month of July 2016.  I was also prescribed Mometasone Cream for me to “gently” apply post treatment. Hence, my skin flap is pliable, and not hardened.

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These pictures are of  just two types of reconstruction surgery known as Autologous of “Flap” Reconstruction. This is not the type of surgery I will have but the surgeon did go over the details of these two types of surgery. Reason being, IF my body rejects the Implant Reconstruction, this is “Plan B”. I will pray that my body does not reject the implants as these surgeries are more invasive.

 

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53:  A Show and Tell Moment

In February of this year at my first meeting with my Plastic Surgeon he gave me homework. He wanted me to research as to how many cc’s I wanted my implants to be. I told him on how before cancer my breast were not symmetrical, my left breast was larger than my right breast. Although this was not noticeable with clothes on, I was limited to style of bras and swimsuits because of this. So, I told him I wanted them to asymmetrical (same size)…..he smiled and said he can do that. My husband chimed in and asked the surgeon if he can place a set on my back so he would have something to hold on to when we slow danced!!!!! We burst into laughter….got to love my husbands sense of humor!!! ( I hope this doesn’t offend anyone)

So, how does one determine reconstruction size? You google it, Pinterest it, or simply ask a friend! I was at the Cancer Center talking to my good friend and fellow Mammography Technologist Extraordinaire. I mentioned my dilemma to her, before I know it Catherina and I are in the bathroom for A Show and Tell Moment. She was quite impressed with how pliable my skin sparring mastectomy is, as Mammographers we are oh too familiar with what a post radiated breast can look like. She showed me her implants and her size, decision made, I will shoot for a “C” cup! I also have to keep in mind and make it clear to my readers that mine is a “reconstruction, post mastectomy” and not a “breast augmentation”, so end result can vary…..I will have no nipples, they can get tattooed on later!

Exactly what is a Modified Radical Mastectomy, Skin Sparing? Basically my nipple was removed (I opted for non-nipple sparring) along with all the breast tissue. For those of you that have been following my blog from the beginning, you will recall that the Breast MRI that was done when I was first diagnosed found an additional cancer on my left breast,  4mm away from the fascia of the chest wall, straight back from the nipple at clock face 12:00. What is left behind is a deflated breast, all my breast skin was sparred minus the glandular tissue…….I have a deflated boob.

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I was in Redlands last week signing a release of medical records for my primary doctor in Palm Springs, he wants surgical notes of my Hysterectomy/Oophorectomy from 2009. (I sure am missing a lot of parts now!!). I stopped in at the Women’s Health Imaging Center to say hello to Renee, we chatted a bit about my blog amongst other things. I showed Renee this picture and how I wanted to share what a “skin sparring” mastectomy was. I took this the above picture after doing my exercises, I was cooling down, stretching. But I wanted to show more, I wanted to share the actual skin flap.

So what does a good friend do….offer to take photos for your blog!!! Renee and I quickly go into one of the mammography room, off comes my blouse, bra and Betty (that’s my prosthesis name) another Show and Tell Moment! Mahalo Renee for taking these pictures for me on a whim!

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Needless to say, I am ready for reconstruction. Today June 21st I went to the Plastic Surgeons office, the appointment went well. My husband Jack was with me. There was a moment of laughter when the topic of the prophylactic mastectomy was discussed, the surgeon asked if I was going to spare (keep) the right nipple? I said no, I don’t want to be like a one-eyed pirate when the nipple is hard! I closed one eye and said “arrrrggg”, the surgeon laughed……it was a funny moment. So what’s next? The  Breast Surgeon’s office will be contacting me to schedule labs, chest x-ray and an EKG. The surgery will then be scheduled. The Breast Surgeon Dr. Laura Lee will do the Right Prophylactic Mastectomy and the Plastic Surgeon will be doing the reconstruction placing the expanders. Post operative I will have four drains, two on each side. Two of them come off one week post-op. The other two come off after the fluid drainage has subsided. Expanders will be expanded every week until desired fullness is obtained. Then, three months later, like in December sometime the expanders will be switched out for the implants.

Holy smokes this is a long blog! If you read it to the end, many thank yous.

Mahalo, Pina

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40: Huli Practise

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The photo above was taken at a regatta competition, the canoe flipped over, other wise known as “Huli”.

I have been practicing for The Voyage to Lana’i , which is a major fundraiser here on Maui benefitting The Pacific Cancer Foundation. We will voyage from the island of Maui, to the island of Lana’i. There are over 300 hundred paddlers going across!

Saturday morning was huli practice , all voyagers that have never been in an actual huli were  highly encouraged to attend.  So there I went! I will be the first to admit I was not comfortable with it,  but knew I needed to experience it……..no fear!

Kimokeo, one of the organizers and spiritual leaders was with a canoe just off the shore. I was called over, I was honest and told him I was just a little frightened. (In my head I’m thinking, I am about to embark on a journey across the island….seriously) Kimokeo, (fully aware of my situation) asked my what side my surgery was on? I told him left. At this point he is in the ocean, he instructs me that when the canoe flips, come up next to him and hold on to the canoe with my right hand only. We flipped, I surfaced, I survived. But what happened next was totally unexpected.

I mentioned that Kimokeo is a spiritual leader. He does blessing through out the island. As I was coming out of the water he called me back into the ocean and placed his hands on my head and started praying in Hawaiian over me. He had me repeat the prayer with him, three to five words at a time, all in Hawaiian (pigeon). It was so beautiful and spiritual, I am literally getting chills as I am trying to describe this event. We went under water together three times together. I have been blessed and Baptized by Kimokeo. I truly feel that he sensed a fear in me, I no longer have that fear, I am ready for this voyage.

Mahalo for reading my blog

Pina

 

 

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32: Radiation Therapy

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We flew back to Maui one week ago today on April 30th. The picture above is a picture of Sugar Beach in North Kihei, it’s a really nice long walk!!! On Monday I had my simulation appointment with the Radiation Oncology department here at the Pacific Cancer Institute on Maui. I got to meet Dr. Baker (he was off island the last time I was there). Dr. Baker talked with us (my husband and I) and explained again the importance of radiation treatment after chemo for me. It is important to know that not everyone with breast cancer gets both chemo and radiation…..each case is different.

The simulation CT was interesting. My upper body was positioned on a deflated pillow that contained micro beads. These micro beads when heated up stiffened and hardened, forming a mold of my upper body including my head. I laid down on it with my right arm down and my left arm up with my elbow bent. The mold was created, this will be used for all my radiation therapy appointments. The purpose of the simulation CT is so that the Radiation Oncologist can determine the radiation field and create a treatment plan. That is the simplest explanation I can think of without getting too technical!!!

The Radiation Therapist (Radiologic Technologist with a specialty license in Radiation Therapy) was very kind. Part of the process for the simulation appointment is you get marked (tattoo)  where the laser beam is to be positioned for you treatments. I joked with Max when he was about to tattoo me that this was his “side hustle”! I also let him know that these were my first tattoos, we laughed because seriously they are two very small dots!!!

My treatment will be six weeks long, Monday thru Friday my first treatment is Wednesday May 11th!! I am off of work for one more week, I go back on the 16th of this month. Just like with chemo I will work thru the radiation therapy as well. Maui Diagnostic Imaging will work with my appointments for the next six weeks permitting me to work thru this next chapter of my treatment.

Time to sign off, much Mahalo for reading my blog. It is 9:11 am, I need to do my physical therapy and pick up two very special people that will be here with me for the next seven days!!!

Aloha Pina

 

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21: Chemo #5!!!

 

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Tomorrow I fly to Oahu for Chemo #5!!!! It feels like just this Monday I was feeling much better from the effects of chemo #4! This last round was really rough. The nausea subsided, however the stomach bowel issues continued. My bones aches and I get really tired. I just ignore the ache and work through it, working through this has been really good in keeping me busy and just having something to do instead of being on medical leave. My Oncologist wanted to put me out on Medical leave, but I opted to work through the Chemotherapy  instead. Really thankful to MDI (My employer) that they have worked with me with my limited availability.

Patients have been so sweet, I get lots of hugs from them. Since I have been working here for over one year, I am doing mammograms on patients that I attended in 2014. They recognize me and ask what happened, I share my story with them. I get lots of hugs, some patients have asked me if they can say a prayer with me before the leave. I have had patients tell me that I have a positive aura and they feel that I will be just fine. I get lots of compliments on my complexion, and the way I use scarves to wrap my head. And then of coarse there is always some people that are not so nice. I have been asked if I am Muslim twice! One patient asked me if I was Middle Eastern? I have been asked if I was Jewish?  I am to the point where my response is “no, I have Cancer and I have no hair, that is why I have this on my head!” One on the patients that asked me if I was Muslim, asked that in a very harsh tone in here voice. I wonder if I would have said “yes”…..would she of let me do her mammogram? Those questions are just not appropriate! This past week and a half at work has been interesting. I don’ let those people get to me, they are a small percentage compared to all the well wishers! Several patients tell me that they will look forward to seeing me for next years mammogram! Yay, they are looking forward to next years mammogram!!!!!! Mission accomplished!

I am not looking forward to the next few days as the effects of Chemo #5 set in. However I am looking forward to having my whole family together here on Maui for Christmas!!! I know that the weather in southern California has been cold, today here in Kihei the temperature reached 91 degrees!!!! Warmest Aloha to all reading this, and please feel free to share my blog if you like.

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16: Breast Cancer Awareness

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On Saturday September 26th, the effects of my first Chemo treatment hit me like a ton of bricks. Words can not describe on how sick I was feeling. The vomiting and diarrhea was like NOTHING  I have EVER experienced. Your body is so weak, your bones ache, you have no desire to eat, drink, or talk. You know you have to eat, but it takes energy to eat, and you just do not have an ounce of energy to spare. I have a new appreciation to all the patients that have passed my path in my Mammography career, they are true survivors, I too will soon be a survivor!

On Monday morning (Sept. 28), my primary doctor took the dressing off of my Portacath. She reached out to my Medical Oncologist to discuss medications to ease the effects. The medications made a huge difference, but I still felt awful. I don’t know what I was thinking when I thought I could go into work on Tuesday!…….I only lasted three hours!!! On Wednesday, my day was going to be split between our Triangle Square clinic (11 miles away) and our Kihei clinic  (.2 miles away) from my home. Was fortunate that MDI was okay with me only working the afternoon in Kihei. I worked on result letters, waited for the Hologic service engineer as our power supply on the unit was going to be replaced. The part was scheduled to arrive on Thursday, so he bypassed the issue so I can do the QC and patients till Thursday. Because of this issue patients were taken off the schedule, I only had two patients to do, even then, when I was done, I was so exhausted. Lee, the front desk receptionist was super helpful. She was going out of her way to help me in any way possible……………….truly blessed to have amazing staff at MDI!

With the new month being October, it brings us the annual “Breast Cancer Awareness” month. The picture above is made from only some of the t-shirts I have accumulated from doing Breast Cancer walks. If there is a walk near you, please consider participating.

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