Still Tethered . . .

Today was my follow up appointment with the 2 PAs for my doctors at the South Jordan Huntsman location. I was all set to get my drains out, only to find out that I need to wait until the drainage is at the minimum amount for 3 DAYS!!! Whaaaat???? I did not know it had to be for 3 days, so I had big plans for what I was going to do without having the proverbial ball and chainlike features coming out of both my right butt cheek and below my breast. I feel so disappointed, even though I get to try again on Monday but seriously such a bummer. 

Since I’m off pain killers, I technically could try driving but I’m still sore enough that my sweet mother in law took me and was kind enough to drive me to the post mastectomy specialty store after my appointment. This turned out to be a successful trip to get me all set up with new bras to fit my new body. I can’t wear them all quite yet but I got that little high you get when you go shopping and find things that work! And the best part - insurance pays for it!!! Definitely never had a shopping trip paid for by insurance before . . . If you’re looking for post breast cancer resources, I recommend Feminine Forms in American Fork - the ladies there have been through cancer and have options for every situation you can imagine.

Aside from my appointment today, I really haven’t left the house or tried riding in a car much. But, my boys are getting ready to start kindergarten next week, so I got to do a little outing on Thursday to meet their teacher and look around their new school. It made me so happy to see them have fun and be excited about school. 

I’m definitely still more tired than usual and get worn out. I’m still pretty sore and have limited range of motion.But I’m thankful to have help to wrangle my crazy kiddos and they have each been so sweet - saying the most precious prayers on my behalf. It is humbling to sit next to your child and hear them pray for “Mommy’s owies to be gone” and be thankful that there is "no cancer in Heaven”.

So I know I can make it a few more days with the drains, I’m just being dramatic and can’t wait to get rid of them. It is symbolic to me of moving forward in the healing process and not being tethered down by anything. If you’ve never had surgical drains, count yourself lucky. I won’t attempt to explain them fully but trust me when I say they suck - they’re a bit uncomfortable, inconvenient and well - gross. But they help your body heal by draining fluid from surgical sites.

To be honest, I feel like this is the hardest part. I hope no one takes this the wrong way but a week or two after chemo and after surgeries is the loneliest, hardest time because you’re coherent enough to realize what you’ve been through and feel more of a desire to go and do things but not healed enough to do them yet. And it seems like the most support is shown during and right after the procedures but then real life goes on and people get busy but you are still left healing. I’m thankful to those who have reached out to check on me and the many kind things you have done. My sweet friend from high school came by today and it really lifted my spirits. 

Anyhoo, I am feeling pretty good and happy with my results so far. I know I am going to need at least one follow up surgery to tweak some things and create symmetry but as I’ve mentioned before, this experience and doctor is 1000% better than last time I had cancer (what a weird thing to say?)!

Healing with the Best News Ever!

Thursday I made it home from the hospital about 12:30 after a very uncomfortable car ride. Turns out it is very difficult to sit on one bun or lay down in the car ;) - especially with a seatbelt on. 

I was so happy to see my sweet kids who made me a cute card and were so eager to help me with whatever I needed - they were fighting over it actually :).  It is seriously so nice to be in my own bed with all the amenities!

I am doing pretty well except for the pain in my butt, which is worse than the pain in my boob :). Trying to find a comfortable position to sit or lay is hard. It feels better to stand and walk around but then I get tired. The hardest thing right now is the lack of mobility from the fatigue and the drains I have in me. Luckily, I get to have the them out soon - probably Friday when I go for my follow up appointment. 

I am grateful to my parents, some good friends and of course my husband who came to the hospital, brought me food and just helped the time go by faster. Did you know that flowers aren't allowed in ICU? At least at Huntsman, so sadly, I didn't get to have them during my stay :(.

I’m trying to find good shows to watch to make the time go by faster since I am super bored. Not sure who knows this about me, but I love being productive, so my schedule is usually packed and I love feeling so accomplished by the end of the day. This is truly the exact opposite of that!! I hope to be able to attend activities in a week or so after my drains are out :).

I am very blessed to have a lot of helpers to get through everything we need right now. I also got the best news ever last night. My doctor sent this message to me (which I didn’t expect to get for another week or two: "Your pathology results from surgery look good. We found DCIS, about 1.8 cm with clear margins. The nodes were negative.

With this finding, no more treatment is needed.”

I am over the moon, knowing that they got all the cancer!! I’m also going to do a blood test that screens for about 50 different kinds of cancer as soon as I can. It’s an expensive test that typically isn’t covered by insurance. But for me, I feel like the cost is totally worth it.

I’m feeling kind of blah, nothing really exciting or inspiring coming to me. I am really grateful for so many who have helped. My sister Sheri came by with some healthy food and flowers, my cute step-daughter brought me some yummy treats and balloons and my other sister, Mitzi and her family took the kids for the day to play. The house was totally quiet so I took a 3 hour nap and slept through the amazing dinner that another friend brought.

Another good friend is coming tomorrow to spend the day with me and she is bringing some unique groceries that I wanted from different stores for my special diet. It’s nice to have that to look forward to break up the healing process a bit.

My mom just sent me this video HERE that she took of me when I woke up in my room after 10 hours of surgery - ha ha. It’s funny to watch because I actually don’t remember her taking it or talking to my kids. I also don’t remember even being wheeled into surgery. Maybe it was the all nighter I pulled before surgery - totally worth it because I got so much done. I recommend it :).

Great News!

I am officially busting out of this place today! So happy for everyone involved to not have to drive so far to see me and bring me things :). So excited to be able to get a good night’s sleep without all the poking, prodding and meds. 

First thing I’m going to do when I’m home is hug my kids (very gently) and then have my husband wash all of my blankets and pillows - since I brought 3 of each. One of them is a cooling comforter that everyone here is dying over how awesome it is. It’s call the cooling Rest Duvet and it is truly so amazing if you want something for photoflashes, etc: https://www.restduvet.com I also have a heated blanket that is really great since I go from one extreme to the other. Click HERE if you want to check it out.

Since this is not my first rodeo, I decided to make everything better by bringing the comforts of home. So I brought my own food, surgical clothing, earplugs, eye patch for sleep and even my own toilet paper. Having these has truly made a huge different! And thanks to my wonderful husband for being willing to cart all of my stuff here for me!

It is amazing to me how different this experience was compared to doing the same SGAP surgery at IMC over 11 years ago. The doctor has given vague restrictions but overall, I just need to listen to my body and not move my right arm too much, as well as avoid lifting. I can sit (on one bun) but it’s not super comfy, so it’s only for a few minutes at a time.

I am up and able to move about pretty easily. Last night they moved me from the ICU to the regular unit - about 10:30 :(. The nurses were helpful and surprised that I could walk instead of ride. I am up walking as much as possible to try and heal my body and maintain mobility. The nurses were also calling dibs on who gets me, since they said I am a nice, easy patient - wow, so great to hear that! Again, compared to 11 years ago, the nurses treated me like I was difficult and that added to the trauma of the experience. 

The pain comes and goes but it’s not unbearable, especially when I’m laying in bed. Getting in and out of bed is the hardest but I’ve got a handle on it :). I don’t love taking pain meds if I can avoid it and have been off them since Tuesday. So hopefully all the bodily functions can start working soon :).

Hello from Huntsman ICU

I get to stay here in ICU one more night and then most likely will be transferred to the regular unit sometime tomorrow. Things are 1000% better than the first time I had this surgery at IMC over 11 years ago. 

Huntsman is just so organized and has such well trained staff. I’ve seen doctors 3, maybe 4 times already today. My nurses have been excellent. And my mom and Derek have been here, along with my friend Kelly.

The nurse is astounded at my ability to move as much as I am. And also trying to train me not to move my right side - a very tall order for someone who is right handed :). Currently I am sitting in a hospital bed that transforms into a chair. I was thrilled to get out of bed and walk around a bit a few times today. 

The surgery was about 8-9 hours and so I am pretty loopy with the anesthesia still in my system, along with pain killers. They are monitoring my heart rate and blood pressure vigorously and they listen to the surgical site every hour to make sure it’s healing correctly. It’s so exciting to know that I’ve almost made it through one day already!!

I'm Coming for you Cancer!

Twas the night before surgery and all through the house, not a creature was stirring except for me and the mouse;

My bags are all packed and the food made with care -  in hopes my new body soon will be here;

The children are nestled all snug in their beds;

While insomniac vibes dance through my head;

I decided to pull an all-nighter since I have to be at Huntsman at 6 a.m. and so I’m looking forward to taking a very long nap since surgery will be 8-9 hours ;). I get to be the first and only surgery in the room for tomorrow. My first surgeon will work tediously to take out every last bit of breast tissue and test a few lymph nodes to ensure there is no cancer spreading. Which, thankfully is extremely doubtful, since technically I am stage 0. 

Then the plastic surgeon and another doctor will flip me over to cut a nice slice of my right butt cheek out to make a new breast. Nice side benefit - I get a bit of a butt lift like I did on the left side 11 years ago. It will be nice to match :). 

They will then flip me over again and connect blood vessels from my butt to my breast area so that the tissue will have a blood supply and live. This surgery is rare but it has a very high success rate (there is a 3-5% fail rate), which means the tissue doesn’t survive. For this reason, I will be in ICU for 24 hours so that they can watch me closely and keep the room super warm - yikes, not a fun thing since I also cannot eat or drink until Tuesday, just in case they need to do another surgery. 

My sweet husband is going to be staying overnight with me this time - I was thrilled to find out that he is allowed to do this at Huntsman, even in the ICU. I know it will be a sleepless night for both of us, but it is so comforting to know that he will be there. I feel like I have an army of people praying and supporting me through this and I am so touched and thankful. 

I have talked briefly with my kids before today about my surgery but tonight at dinner, we prepped them for the week since I’ll be at the hospital until Thursday or Friday. We had some special moments and I was able to receive a priesthood blessing from my dad and husband. What an incredible thing to have the powers of Heaven brought down to bring me comfort and guide the hands that are helping me. 

Thanks for reading, I love knowing that people care enough to read!

Surgery Coming Soon

I had my pre-op today for surgery - which is officially scheduled now for August 1st. Whoo hoo! Not that I’m excited for the recovery but I am excited to get this show on the road and have the cancer out of my body. My sweet son, Kimball has been asking so many questions and worried because he knows I will be in the hospital for 4-5 days. Apparently he has overheard me talking to people about cancer, so he wanted to know all about it. I try to take pictures for him and explain whatever I can to help him learn and put his mind at ease. I'm gonna miss these cute faces while I'm at the hospital, but they are my inspiration!

I am so grateful to have received my wish to have the mastectomy and reconstruction done in the same surgery. This is a rare gift that doesn’t happen very often, but since I don’t need chemo or radiation, they can do it. It’s going to be a long day for the medical team (glad I get to sleep through it). I get to arrive at the unsightly hour of 6 a.m. and the surgery will be 8-9 hours - and that is with 3 surgeons, wow! I am so grateful to and impressed by the staff at Huntsman. The experience so far is 100% better than my experience at IMC. 

I was reading my blog from 11 years ago to refresh my memory on the healing process. There is definitely some PTSD from what went on but I am feeling much better about things this time around. And the best part is that my husband can stay overnight with me - even though I will be in the ICU. Seriously a miracle in my book. If you want to read about my experience last time - here it is: https://matchmakeramy.blogspot.com/2011/06/on-mend-again.html

 

Most people wonder why in the world I will have issues sitting after a mastectomy. Well, the surgery I am doing is quite unique actually. Most women who do reconstruction using their own tissue are able to use tissue from their stomach - (the DIEP flap surgery). But I am lucky enough to only have butt tissue to use, so mine is very unique - it’s called the SGAP. Here’s a link if you’re curious and want to read about it:  https://www.microsurgeon.org/sgap

Thank you so much for caring enough to read this and for the kind words of encouragement and support. They truly mean the world to me!

Finally!!!

I finally met with my new breast surgeon today, Dr. Jane Porretta. This has been a long awaited appointment and the reality of my situation hit me a bit harder than expected this morning. It was surreal to be back at Huntsman for treatment after coming there for the past 11 years for my first rodeo and then follow ups that were thankfully, always clean until this last one. 

Gratefully, she confirmed what I expected her to say - a mastectomy is the best next step and that I won’t need chemo or radiation. Just waiting to hear from her scheduler on when the surgery will be. I am literally breathing a sigh of relief and anxious to get this cancer out of me. I am also relieved about her comments that since it is a non-invasive cancer this time, it could live for years before growing. Last time that was not the case. I’m still anxious to get the surgery done but glad it’s not really growing right now. She also validated what my other doctors have said - that this second cancer is completely unrelated to the first. Whaaaat???

Going through this with 3 precious littles and a wonderful husband by my side this time, has really made me slow down and enjoy each moment I have with them. I hope and pray I can remember this even when I am past the worst of it. I recognize that there are many going through cancer and other trials that are much worse and so I am humbled by my good news. 

For me and those in need of extra comfort, I share this talk that my brother sent to me this week: CLICK HERE TO READ -  it really lifted my spirits and reminded me that we literally do have angels among us. 

Reconstruction

Yesterday was my appointment at Huntsman with the plastic surgeon, Dr. Agarwal. He came highly recommended by several of you. I really liked him and his team, and he was very thorough in discussing the approach we will take for reconstruction. It was refreshing and encouraging, especially in comparison to my last experience going through this process.  

As we were leaving Huntsman we ran into a sweet couple that are good friends with my parents. They shared their experience with the husband who has been going through cancer and the miracles they have seen. I can attest that the miracles are truly real and like the song by Hillary Weeks: "I haven't seen His face but I have seen his miracles". Without this experience and many others, I am not sure I would have come to realize how much the Lord is truly aware of me and my personal situation. He has truly consecrated my experiences for my good.

Tomorrow I will go in for a CT scan to determine what areas of my body they can take the tissue from to create a new breast after the mastectomy. Dr Agarwal is one of only a few doctors in Utah who does the specialized micro surgery I need. Essentially they are looking for an area of my body that has enough fat, tissue and sometimes skin, that can be cut out and used to make a new breast. The result is a very natural look and feel.  

One of the key factors in performing the surgery is finding the right blood vessels that can be reattached to the chest so that the tissue stays alive after the reconstruction. So the CT scan I am doing will analyze my buttocks and thighs to see if those will be the right donor areas for me (I feel like there are so many other areas they could use too - lol). It is pretty amazing what can be done for pretty much any medical issue through modern medicine. 

Many people do not know about this type of surgery that can be done for someone like me who cannot do implants. My body tends to reject foreign objects and when that was attempted last time I had cancer, it was a disaster to say the least. In 2011 the expander they put in after the mastectomy (with the intent to stretch my chest wall and do an implant after chemo) was extremely painful and also caused a horrible infection that required them to go back and cut out half of my skin on my breast. 

As a result they did the specialized micro surgery that took eight hours and ended with me in the ICU so that I could be monitored more closely to ensure success. This time I hope to avoid those issues and not have an expander by doing the mastectomy and reconstruction at the same time. One of the key factors in deciding if I can do both surgeries at the same time is whether I will need radiation. If I don’t then I will get my wish of doing both surgeries at the same time! Monday I will meet with my other surgeon who does the actual mastectomy. As soon as she gives the greenlight on not needing radiation, I can schedule my surgery for both. 

Stay tuned for more exciting updates on my adventures . . . 

Time to Dust off the Blog . . .

 The best thing I heard this week is: “the 2nd cancer won’t kill you but the first one might”.  I found great comfort in these words because most people (including me) feel shocked and devastated at a second cancer diagnosis. I am actually feeling the opposite now that I’ve had a chance to recover from the shock of hearing the news. I truly believe that the kind prayers, thoughts and messages from so many is what has helped me feel peace and be able to move forward with a clear mind and heart to seek solutions.

I am meeting with my surgeon at Huntsman on June 23rd and the plastic surgeon on July 5th. They said there is a good chance I can do surgery shortly after that. I’ve already decided I want to do a mastectomy again since this will be my best chance of getting rid of all breast cancer and avoid ongoing MRI’s. Since this cancer is noninvasive, there’s no sign that I would need to do chemo and radiation if I do the mastectomy, so another plus! So I’m actually excited to get this stuff out of me!

Since my left breast mastectomy in May 2011, I have had an MRI or a mammogram every 6 to 12 months to check for any issues in the right breast. Since my first cancer was considered hormone negative and I don’t have the BRCA gene, my doctor said that if it came back it would usually be within the first couple of years. 

This new cancer in the right breast appears to be unrelated and quite different (in a good way) than the first. So apparently I should go to Vegas since lightening has struck twice for me . . . In December there were some spots that showed up on the MRI that they thought was just dense breast tissue but wanted to check it again in 6 months. So I did the MRI and a mammogram on June 6th. 

My son Kimball was a little bit sick that day and was home with a babysitter. He is very inquisitive and wanted me to send pictures. So that’s why I have a random pic of me in the MRI machine - not realizing then that I was capturing a not so fun moment that would later turn out to be cancer. 

I used to get really nervous for the MRI’s - I mean, who loves sticking their entire chest into a massage-like bed that looks more like a torture chamber . . . It’s already hard to breath in that position but then they tell you to hold very still while the machine beeps so loudly that it feels like you’re going to lose hearing. About halfway through they start pumping blue dye through an IV to see what areas light up. It only takes about 25 minutes now, which is shorter than it used to be. I am thankful to report that as the years have gone by, it became more and more routine and I didn’t mind it so much. 

After the MRI I headed over to mammography and they did my scan. After a couple of snapshots, they asked me to sit in the waiting room and not change out of my robe yet. I thought that must just be a new thing but then they called me back in to do more pics. Then a third time to talk to the radiology doctor. She explained that the spots they thought were calcifications were not looking exactly the shape they should be and so they wanted to do a mamo-guided biopsy.

I have heard people explain mammograms in a horrible way, saying it is so painful and scary. I do not feel that way about them. I kind of look forward to it because it is one more step to knowing what is going on with my body. I feel that way about most medical treatments. About a month ago I had a colonoscopy done. Yes, the prep isn’t fun but I was excited for them to look at my insides and give me yet another confirmation of my body functioning correctly. It took a bit longer to recover from than usual because they biopsied my stomach to check for cancer and other things. While they did find potential Celiac disease - the surprising reason for my stomach pain the past few years, there was no stomach cancer.

I am truly grateful for the fact that I have no indication that I am going to die from this but that there is a treatment plan that will allow me to get to a better place than I am now. Most diagnosis for various diseases are not like this. As such I feel almost guilty that the “C” word gets so much more attention than other ailments that are, in many cases a lot more difficult to get through. 

If you’re reading this and you’re going through something, I’m talking to you. I know something of the pain you have felt in being alone and the uncertainty about your future and how things will turn out . While I have been surrounded by friends and loved ones during my cancer journey, I have been through many other difficulties where I have felt completely alone and was not able to share so openly as I am now. It is surprising to some when I say, this is not even close to the hardest thing I have been through in life. I know I’ll get through this and I’m blessed to have so many more reasons to fight and live than ever before. Thank you for reading and for your love and support. I love you back.  

Faith, Hope and My Kind of Courage.

I am touched by the kinds words of support and excitement after the announcement that Derek and I are expecting twins! My heart is overjoyed at how kind and well received this news has been by so many. I am almost 10 weeks pregnant and finally seeing it in black and white and hearing from so many of you, has really made it feel real. 

I often have delayed emotional reactions to both good and bad things that happen – and finding out that I'm pregnant has proved to be no different. At the age of almost 44, I can’t believe I am going to be a mother, after so many years of waiting, wondering and believing it likely wasn’t even possible?! But I am here to testify that no matter what your circumstances in life or how difficult things are, the Lord does consecrate our afflictions for our good. Yes, even when our pain and suffering seem endless and pointless, there is always a way for us to ultimately find the gift in our suffering.

No, it certainly didn’t feel like a "gift" when I found myself divorced at the age of 29, as I was climbing out of the depression that hit and a mountain of debt to pay off from my marriage. And it didn’t feel like something the Lord could consecrate for my good when I was diagnosed with an aggressive breast cancer tumor at the age of 38. As a single woman, trying to attract a good man and facing the new reality that I was going to lose a good chunk of my female anatomy as well as my hair, with very little hope for being able to have children, I was devastated.  And as I have experienced the ups and downs of being an entrepreneur, with fears of not being able to pay rent or make payroll, or fix things with an upset customer -  and more sleepless nights than I care to admit – NO, it certainly didn’t appear that anything good could come from my challenges!

But you know what? Every blessing I have received has come because of or in spite of my challenges!

It has been said that the journey of a thousand miles begins with a single step. Many of you out there may be feeling like your journey is much too long, too tiring and too overwhelming to keep going. I feel your pain. I know what that’s like and I know the hopelessness that comes when we are in the moment of despair and nothing seems to make sense, when we see no end to our suffering. 

But I also know the great joy of not giving up, doubting our doubts and clinging to the truths we hold dear and true. I rarely feel God in the moments when I think I need Him most. For me it is usually in hindsight that I realize He let me go through the grief, pain and loneliness for His own wise purposes – perhaps so that I can learn patience, empathy, compassion and become more like Him in the process. 

Remembering that He did not spare His only begotten son from the greatest suffering of all, helps me feel less picked on and more trusted that He really does have my back and knows better than I, what I need. He also knows what I want and at times He grants the desire of my heart, after I do what I can to help bring about His miracles.

Being an older mom, brings unique opportunities along with a few challenges. I’m grateful for the many friends and family who have children old enough to babysit my future kids J. And I’m thrilled to represent the women in my age group who are wondering if this blessing is still possible. In the coming months, I hope to share my journey of being a 44-year-old expectant mom of twins, with a mission to bring hope, renewed faith and increased courage to those who can benefit.

I’ve never been the most adventurous type to bungee jump, sky dive or back pack across Europe - and I’m deathly afraid of spiders and most dogs. But I know how to look a trial square in the eye and say, “game on, you’re not going to stand in my way of going after my dreams”. 

Even as a shy, awkward, 8^th grader, I found the strength to put my insecurities aside and go after my goals of having friends and being involved in school activities. It wasn’t easy, but I kept going because I knew that the kind of courage I had was to feel the fear and do it anyway. Being able to keep going and face the adversity that comes during those quiet hours when I’m alone with my thoughts, wondering if God is really listening – that’s my kind of courage.

I’m not saying that having courage means you get everything you want, when you want it or that life will be easy – in fact it might even be more difficult at times. But I do know that life is better with faith, hope and courage. It is my prayer that you will come to realize and embrace the hope and faith to discover whatever your kind of courage might be and allow it to guide you to what your true potential can be.