The First Few Chapters
- Doreen Schmidt
- Jul 19
- 28 min read
... Of this part of my story When I was first diagnosed with breast cancer, I started a CaringBridge page in order to keep everyone in the loop. It was really hard dealing with it all emotionally and having to respond to multiple messages a day asking me for updates and how I was doing. But when I switched over to my blog, it felt like a story I was writing but without the first few chapters. So, here it is. My CaringBridge posts - the first few chapters of this part of my story.
My current health journey began on Thursday, April 18th, 2024. I had my annual routine mammogram scheduled. I had actually put it off a few months due to being busy. My last one was January of 2023 but this year I scheduled it for April because we had quite a bit of travel coming up, a remodel in the works at my office, and I was also trying to get to the bottom of my newly diagnosed para hyperthyroidism. And, of course, keep up with client appointments. We had decided to do most of our client annual reviews over January and February this year. So, yeah, I was busy.
Why am I doing a CaringBridge page? Well, I’m sure this is no different from most, but I am finding it so exhausting having to keep up with updates. I haven’t had a chance to see the people I’ve wanted to tell and can’t keep up with those whom I’ve already told. I love the well-meaning check-ins but I lose track of where I need to fill in the blanks and I don’t always remember who’s up to speed. I guess it’s part of the anxiety and stress this recent diagnosis has created. And, turning 50. Oh, that’s right, I’m 50!
So, I got a call that afternoon of April 18th that I needed to come back in for a re-check. They found something suspicious. It was déjà vu! This had happened right before my birthday back in 2019. I had my recheck mammogram, an ultrasound, and a biopsy all in one day. And it was benign! Bam, done. Not going to worry about that again. And I will admit, I thought that would be the case again this time. So, when they told me I’d have to wait a week to come back, I didn’t sweat it too much. I enjoyed my 50th birthday party, I attended my son’s theater performances, and went to work as if everything was just fine.
Turns out, it wasn’t just fine. On April 25th, after a 2nd mammogram followed by an ultrasound of my left breast, I was told I had a very suspicious mass that was “not small” and had a high probability of being malignant due to its very abnormal shape.
On May 2nd, after having a biopsy of the mass. I was diagnosed with Invasive Ductal Carcinoma, indicated by a tumor measuring 2.8 x 1.2 x 1.1 cm in my left breast. I could go into more detail and explain the pathology report terminology but in summary, it was invasive, aggressive, and growing fast. I went to some very dark places those first few days…
Currently, I am in the information gathering stage in addition to seeking answers. I've met with a surgeon and other healthcare professionals to learn more about my diagnosis and options for treatment. I'm currently awaiting results of genetic testing and so far we've been able to rule out any abnormalities in the intramammary lymph nodes based on an MRI followed by another ultrasound - so I'm calling that a win. This Thursday morning I meet with my surgeon again to hopefully put a plan of action into place. Enough waiting! I want this fucker out of me (excuse my French!) I have an idea of the path I want to take but it will depend on a few things so I'm not going there quite yet. By the way, the surgeon I am working with is the same doc who took out my appendix in 2017. I remember having a great experience and thinking back to how I hadn't had an experience like that since. I feel very fortunate.
Today I received the results of my genetic testing and it all came out normal. This is good news. Any abnormalities would significantly increase my risk of getting other types of breast cancer, ovarian cancer and pancreatic cancer. It could mean the difference between a mastectomy and a double mastectomy for example. It's helpful information in many ways.
This is great news for my sisters and nieces also :). Their risks have been eliminated to the statistics of getting these types of cancers in general. Which is still insane but 30% is better than 50%!
This information gets me closer to determining my treatment plan, which, I should have in place by tomorrow at my next appointment! I'm hopeful that it's a pretty cut and dry process but don't we all? It's never THAT easy but I'll continue to stay hopeful. I know what my gut is telling me to do but I still have that little voice in the back of my head who likes to question my gut - should I do this? Or should I do that? Answers come with more clarity - so that's the goal of tomorrow's appointment. More clarity. And a plan.
Yesterday's appointment went great ... I got the clarity I needed to make the decision for my treatment plan. I felt confident and ready to move forward! Until I learned I couldn't get in for surgery until July 15th. How could I possible wait another 2 months? It's already been a month since the first detection of this aggressive, fast growing tumor. If you don't know what it's like knowing you have a fast growing lump in your body meant to kill you, I can tell you firsthand, it is agonizing. The constant waiting has been nothing short of torture and my mental health can only take so much. For the record, I do have plenty of moments where I'm able to enjoy life, be present with others, do work, watch tv, doodle, color, craft, laugh and love and even be calm, peaceful, and patient. But I'm often snapped back into this place of anxiety I am so desperate to control. Sometimes I think the anxiety is taking years off my life :(. The scheduler I'm working with said they were working hard to get me in sooner and that June 26th was "a possibility but no guarantees". So, I did what I often do - I got a little pushy - aka, I advocated for myself. I told her I wasn't willing to wait and that if I had to meet an entirely new surgeon just to get into surgery sooner, I would. I also told her, if I need to leave the Allina system, I would. Guys, if you don't fight for your own healthcare, you need to. It's YOUR life on the line! I'm not willing to sacrifice. And, even if someone said with full certainty that this tumor wouldn't grow much in the next 2 months, I'm still not sure that would change what's going on my brain. And the reality is, no one can say that. Not with absolute certainty.
So, here's where I'm at. I have my pre-op physical this Monday, May 20th. I meet my new surgeon (who appears equally qualified) on Tuesday, June 4th and I'm having surgery on Monday, June 10th. Instead of Mercy hospital which is very close to home, I'll be at Abbott Northwestern hospital in Minneapolis. That's ok - that's actually where I had my broken leg surgery Summer 2022. It was a great experience. Both are part of the Allina Health Cancer Institute. :)
I'm grateful I am able to go into the weekend with a little more peace then I had yesterday. Thanks for listening guys! I'm grateful for all of you as well <3
Latest update - my pre-op physical went well and I'm cleared for surgery, however, because I haven't met the new surgeon yet, my June 10th surgery date is still "tentative". I meet with the new surgeon tomorrow morning ... hoping this is it!!!
Surgery date of June 10th confirmed! That's the only good news I got today. My plan involves a mastectomy of my left breast and will include a biopsy of my sentinel nodes as well as a dissection of the "mysterious" MRI detection of a very small but 'round' lymph node. The small size is a good thing but the round shape isn't. Apparently these nodes are typically oval and the indication of a round node implies potential for cancer. I have no control of this of course, but it does add another layer of anxiety. If there's a cancerous node there, then they have to be removed and the more they remove, the more potential for complications such as permanent numbness in part of my arm, lymphedema, radiation and chemo. I'm told that the risk is low, so I'm hanging onto that. In addition, because of the type of cancer I have (high estrogen receptors) and my age, they want me to talk to an oncologist 3-4 weeks post surgery to discuss endocrine therapy which means drug therapy for 5 years to life (sounds like a prison sentence). I am hoping there are more factors to be discussed and options to avoid this but I'll have to wait until that time comes. It's bad enough that I'm getting chopped up!
Because of the high estrogen receptors playing a part in the tumor (and the reason for it), it was recommended that I have my IUD removed immediately - which I did - but now I'm reading that the IUD has little to no effect on estrogen levels. So what is that all about? If someone can help me figure that one out, I'm all ears. And if I read incorrectly, and removing it should lower my estrogen level, then shouldn't my estrogen level be tested before I'm put on meds for life? I might be getting ahead of myself. Maybe these questions will be answered when the time comes. I'm just not a patient person and all of these things that keep getting added to the list of potentials sound awful. I'm feeling sorry for myself again. And my personal pity party is getting really old. The bottom line ... today's appointments went well. My surgery is schedule for June 10th. NOT July 15th. I really like my new surgeon. She was patient and informative. However, I feel she provided me with TOO MUCH information which included every worst case scenario and she didn't seem to ease my mind a whole lot. Should I be grateful for that? Because I'm not. I'm overwhelmed and exhausted and none of it feels real at all. I'm still walking around feeling like a perfectly healthy human being. No signs, no symptoms. How is it possible that I have cancer?
Today I started listening to the audiobook, Healing by Theresa Brown. It's about an oncology nurse who is diagnosed with breast cancer. I'm an hour in and so far I'm learning her story is so eerily similar to mine. I thought it would bring me a little comfort because I feel alone. Despite having so much love and support in my life, it's still lonely. And hearing a stranger's story just makes me sad and I revisited what I've been through up to this point.
I'm going to hang in there with it, though, because of great reviews, and for the original reason I rented the audiobook - to learn about navigating the health care system, understand it and know what my rights and options are when my health is on the line. I want to hear someone's journey through that process. I want to be proactive in my treatment and confident in the decisions I make. So, I'll take the good with the bad. I continue to feel in limbo ... June 10th can't come soon enough. I'm trying to live my life, keep things normal, do things I enjoy doing, look forward to things (like warm weather and getting in the pool!) but time has stood still for now. I'm looking forward to tonight - a night out with friends!
Well, I’m doing it. I’m going down the Google rabbit hole and I need someone to talk me off the ledge. I’m trying to understand this specific cancer more as I sit and wait for it to be removed from my body (I call it “the cancer” instead of “my cancer” because someone told me not to own it lol) . I wonder if a few facts about my pathology report is being overlooked. This cancer is grade 3. Grade 3 is not to be confused with stage three. The cancer is not staged. They can’t stage it until surgery and by then the hope is that it’s gone. However, the medical professionals in my life keep trying to ease my mind that waiting on surgery is OK. I don’t know how they can say that when this tumor grew to almost 3 centimeters and just over a year. I’m learning that that’s quite large. Here’s a few things I learned from the inter-webs. See pics. Maybe you can understand my extreme anxiety, which is obviously very normal for this diagnosis but it’s just uncontrollable sometimes. and in case you don’t want to read through all of that, and I don’t blame you, the bottom line is the tumor could double every 25 days. Sit with that for a second. They wanted me to wait three months from the initial finding.
Yesterday was a good day. I was in a good place with my work load so I spent a few hours by the pool - it was a beautiful day! Soaked in the Vitamin D, hung out with the hubs for a while and then Eddie had his very last choir concert ever. It was so much fun. It was the annual "RMS Rocks" concert. All popular rock songs by the 8th grade choir, band and orchestra. They did such a great job!
I had some friends reach out with some well meaning words regarding yesterday's post about going down the Google rabbit hole. I promise I am ok!! I am talking to a therapist and working through my emotions as well as talking with a few friends who have been through my journey. The Google stuff is simply trying to dig my way through information about the specific cancer I have and understand it better - and ensure I'm on the right treatment course. There are many variables that go into a breast cancer diagnosis. No 2 are alike. So, as I learn more about the specifics of my pathology results, it brings up more questions for me to ponder. And then I let it out - usually with my husband - but yesterday I did that here.
I'm not known for my patience :) so that's what I struggle with the most. You can probably see the trend here on my journal posts. Also, I'm a financial advisor. So digging into facts and numbers is what I do to ultimately come up with a plan for my clients. And, that's what I'm doing. Only it's more abstract. There's no calculators to use to plug in values and provide needed results. So I have to just live with that. And vent about it once in a while :).
I think it makes sense for someone to tell me I should go out and find someone with the same type of cancer that I have. And that would be easy enough. But, not so much. Here's an example of those variables and how those diagnosed are going to be different from one another. I have Invasive Ductal Carcinoma (one of about 8 different types of breast cancer - this one being the most common). This is good because docs know how to treat it. It's the most common. I have a Nottingham grade of 3 (there are grades 1, 2 and 3). This is NOT considered good. As I mentioned yesterday, it implies that it's the most abnormal and most aggressive. The size of my tumor is considered "medium". It is roughly the size of a grape but far from round and smooth like a grape. It's very abnormal. It has lots of flowery edges. Implying a malignancy (obviously). I'm "absent" for lymphovascular invasion which I'm told is good. My hormone receptor status is estrogen and progesterone positive (of 4 different options). This too is good, as it is common and docs know how to treat it. I am HER2 negative, which is good - if positive, it would mean even more aggressive, and would require chemo. I have a Ki-67 test result of 43% which is not good. Anything over 20% is considered high. It implies that over 40% of my cells are dividing - aka mutating and growing (spreading). There are other variables that someone may test for and there's the genetic testing as well (I'm normal there). So, this is why there are no specific answers. Finding someone with this exact combination of variables would be like finding a needle in a haystack. And since I'm impatient, I end up going down the rabbit hole :). But, please don't worry, I am taking a step back.
Today I have work to help distract me, a date with my hubs and some yoga and meditation planned. I am a little bummed that it's not a pool day :)
Well, tomorrow's the day! My mastectomy surgery. I would think most people would be dreading surgery and don't get me wrong, I'm anxious about it and not looking forward to the recovery process. However, I want it done and gone - it feels like I've waited SO LONG! I want to move forward with my life, and hopefully by Wednesday, they will have the biopsy results of my sentinel nodes to see if there's anymore cancer in there and if I require any additional treatments. Finally getting things moving! I'm ready!
This weekend is/was so beautiful and perfect!! I spent time with family, by the pool, making some crafts, working on a puzzle, snuggling with Menorah (Peanut is not a snuggler but is always near me), hanging out with my boys, planking (there's a story there), and cleaning/organizing. All things that help me diffuse stress and relax!
It’s surgery day!
Mandy here reporting today on behalf of Doreen to update everyone on her progress. She is prepped for surgery and ready to get this thing out of her. Jon reports that she is doing well.
Thank you, village, for sending your thoughts, prayers and good vibes her way.
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Joni Spaeth — 6/10/24
I love those warm paper gowns. She should be nice and comfy once they give her happy juice. Hope everything is going smoothly with no hidden surprises.
Surgery is complete and the doctors say that all went well. Once she is bandaged up, she will move in a couple hours to her room for the night.
Fingers crossed that she had a good nap and the pain is managed when she wakes up!
Doreen is resting comfortably in her room. Her spirits are good, or maybe I sense relief, and her pain is minimal. She is very grateful for good drugs. Let’s hope she gets some good rest. I’m sure she be ready for her own bed tomorrow.
It's been a while since my last post! I'm one week and one day out from surgery and, all things considered, I feel pretty great. I seem to be healing well, getting the rest I need (of course I still overdo it sometimes) and managing my drain.
Every time I read someone's CaringBridge I feel like I don't really know how the person is doing physically. For example, someone will say "I feel great" but does that mean they are walking? Getting around? Still confined to a bed? I have questions!! LOL So, in case anyone else feels that way too, here's where I'm at:
I am up and about and getting around just fine. I have to kind of baby my left arm - I am to avoid repetitive movement (such as vacuuming - oh, darn) and can't lift anything more than 10lbs. I have to sleep sitting up - at least 45 degrees - on my back. No side or stomach sleeping. I have to do this for another 3 weeks.
I have an incision at the base of my left breast (or where it use to be any way) and a drain port on the left side of the breast. It is stitched into my body and is to help drain fluids that may otherwise cause an infection. It is the worst part of this process. It's gross and sometimes painful. But tolerable. The drain leads to a bulb that I can hide under my clothing in a pocket or attached to a lanyard. I hide it because it grosses ME out! I have to strip and empty it 3 times a day, and if I strip too hard or slip and pull it too much, it's a ridiculously awful feeling. It's painful and it messes with my head!! Like I'm tugging on my guts. I'm weird like that, I know. But there's a reason I'm not in the medical field! I really feel for those who have to where a medical device permanently. At least this is temporary.In addition to the drain, there's an expander that was put into where my breast was so it looks like I have a little boob. TMI? That ship has probably sailed! :D I decided to have reconstruction for various reasons. I will have to go in 1x/week to have it "pumped up" so my skin will stretch gradually for the eventual implant. That will be sometime in October.
I see the surgeon on Thursday to hopefully get the drain out - need to make sure it's healing properly!! After my surgery last Monday, I received some pretty amazing news - the got the entire tumor and my margins were clear!!! In addition, the surgeon located 4 sentinel nodes which were removed and biopsied - clear of cancer!! This means, fingers crossed, I'm cancer-free. I am always so hesitant to say that. I won't even bring myself to say I'm a breast cancer survivor - I'm alive, I survived, but it can always come back. I will not dwell on that but I will be proactive about it. I will be going in every six months alternating mammograms and MRIs. I'm encouraged to get MRIs for more than that reason - IF my implant were to leak/burst, I may not feel it happen. So, an MRI will pick that up too.
I still have to wait on one more result: apparently it is protocol that they retest for HER2 positive or negative when removing a tumor the size of mine. It originally came out negative but apparently, and it's rare, that original test may be wrong. The first time they tested it, it came back undetermined so they tested again and it came back negative. So, they are making triple sure. If it comes back positive, they will push for radiation and chemo. That is what I dread the most.
I meet with an Oncologist for the first time on July 9th either way, to discuss any additional treatment courses. My plan is to get as much info as I possibly can so I can make the decision best for me.
In the meantime, I'm back to working a few days a week remotely and trying to do things that help my stress level and pain. I can't complain!!
Another update already! Yesterday I mentioned my follow up appointment was on "Thursday" when actually it was today. I am losing track of the days. I blame it on the anesthesia. I definitely have brain fog! :( Anyway, the appointment went great.
My surgical wounds are healing nicely and, more importantly, the drain was removed! And it was pretty painless actually. What a relief! One more step towards feeling normal.
Today is my hubs' bday so we went out to lunch and then to my doc appt. Exciting, right? Tonight, I'm feeling well enough to make dinner for the family so that's the plan. A really sweet friend made us a bunch of vegan meals to freeze and so tonight I'll be heating up her spaghetti sauce for spaghetti dinner with salad, garlic bread and cheesecake for dessert - Jon's favorite. :)
The most frustrating thing about surgery, is there's this point in time when you think you are doing really well ... and then you backslide. It's happened w/all of my surgeries ... c-section, appendix removed, surgery on my broken leg, surgery on my esophagus ... now this. You'd think I'd learn! As you know, I'm an impatient person. So when I am feeling good, I do stuff. And then more stuff. And while my surgery wounds are healing quickly on the outside, they are also healing on the inside - and not quite as fast. So, I have been forced to spend the last 2 days resting and being good. After all, it hasn't even been 2 weeks since surgery. I am pretty sure I slept 16 hours yesterday.
The latest pain is burning pain and also the feeling of having a rock moving around in me causing pain. Sounds like it's nerve pain as well as the expander moving around on my still healing chest wall. It's the reason I still have to wear a sports bra nearly 24/7 (I can take it off now at night). It's tolerable and manageable when I REST! I'm lecturing myself ;). Just a reminder that I have to listen to my body and let it heal. :) The dogs absolutely love that I've been laying around all weekend ... I feel like a dog. Eat. Sleep. Poop. LOL
Yesterday I had my general surgery follow up visit. My surgeon said I looked great and continue to heal well! All good news. However, I have a whole new set of emotions (mostly anxiety) brought on by my pending oncology appointment.I had mentioned in a previous post that my biggest concern for that appointment was the potential of taking an estrogen blocker med that has hideous side effects. That is no longer my biggest concern. Chemo is. My surgeon informed me that my tumor, after removal, was sent in for testing to determine an "Onco score". That score determines whether or not I would benefit from chemo. I don't want chemo. I hate the thought of it. And not because I would lose my hair - that would suck obviously, but it's more about the poison in my body and the illness it will cause (unless I'm one of the lucky ones).The test is officially called the Oncotype DX test. And it's based on a number of things ... size and grade of the cancer, whether it spread to my lymph nodes (which it didn't), if it was hormone receptor cancer (yes), and HER2 positive or negative (negative). Once the "score" is determined, the results go to oncology and that's what we will discuss at my appointment on July 9. Based on a woman's age 50 and under, my score would have to be 15 or less. If it's over 15, they will push for chemo. This will kill off any "microscopic" cancer cells that MAY still be in my body which would put me at risk of return breast cancer or cancer occurring in other parts of my body. This sucks. I hate it. I'm anxious. Although it doesn't seem promising, crossing my fingers that my score is 15 or under.
Cut, Burn, Poison. That's how we treat cancer in the healthcare industry.
First off, thank you to those of you who texted me this morning and last night to let me know you were thinking of me. It helped me feel less alone going in. Jon was with me so technically I wasn't alone but hearing from you was meaningful. As much as I tried to be hopeful and positive, I knew chemo was in my future. I just didn't know it would be so glaringly important. I was hoping it would be 'borderline' so more of a suggestion really. HA! Wishful thinking.
I could not have had a better doctor. I'm not sure how I possibly could have. Dr Carlson was kind, compassionate, SO informative and knowledgeable. He gave me several examples (both good and bad) of patients in my position. He was honest when he wasn't able to answer a question and he was thoughtful in responding to my concerns. He even talked not-so "western medicine" stuff that have had positive results. More on that in a future post ...So, my Oncotype Recurrence Score is 40. This is based on the pathology of the tumor post-surgery. In layman's terms, if I do nothing, I have a ~50-60% chance of cancer recurrence over the next 9 years. This could be breast cancer but it could be elsewhere in the body. Most commonly, the bones, liver or lungs. The reasoning is, there's a likelihood that micro cancer cells (cells that don't show up on any scans, etc) may still exist and may have even floated to other parts of my body. So, that sucks. If I do hormone therapy only (Tamoxifen) then it decreases those chances to 28% and if I do the chemotherapy as well as the hormone therapy, it drops to below 15%. I feel that this is a no-brainer. And a really shitty position to be in.On a positive note, my clear margins and clear lymph nodes allow me to have a "de-escalated" treatment - I'm still absorbing that info but in a nutshell - my dose dense will be C-T instead of the typical AC-T. That means it's not as intense and the recommendation is 4 treatments within a 21-day period. I should probably consider myself lucky. The other positive ... because of a recent Dexa Scan (Jan 2024) and my diagnosis of osteopenia in my lower back and left leg, I will be eligible for bone infusions (not poison) to help keep my bones from getting worse due to these treatments.It all still sucks. It sucks big time. I still may lose my hair and get sick. I will require a port. But 21 days is a blink. Hopefully it will go by quick and then I'm done and back to getting healthy. I have some goals where this is concerned. I promise to go over that in more detail in a future post. Talking to the doctor today solidified what I need to do. In the meantime, I've already written a book here and I'm exhausted and overwhelmed. Thanks for keeping up with me here.
Hi guys! Again, thanks so much for being here. Today, I have the great fortune of being in Lutsen with Jon and the kids. It's a beautiful (chilly) morning so far but the fresh air and view of the mountains is just what I needed. We'll be here until Sunday. I have a few Zoom calls scheduled with clients but that's ok - that's how it goes when you're self-employed!
So, I misspoke in my last post about my chemo schedule - what it should have said is, I have 4 rounds of chemo that I need to do every 21 days. So it's a 12 week process. I'm going to be candid here for a sec - I'm afraid of chemo. I'm more afraid of not doing it, but I'm scared to do it. There, I said it. I am struggling with getting my head around it. There's a disconnect with what I feel is a healthy body and having to make myself potentially very sick in order to have longevity. What's the price? I'll never know until I do it. And not doing it feels like suicide. And I can't have impending doom following me around. Really, I'm stating the obvious here - I need to do it. However, I need to get my head right so I can tackle this in the best way possible - from a healthier body. I'm going to wait to start (as this is ok to do). And just getaway for a while. I know I come off pretty positive and strong (even my kid says "you seem fine!") but the noise in my head doesn't go away. Ever. That's the struggle with Anxiety/ADHD. I need to calm that noise.
I've decided to book a trip to Sedona for a wellness retreat for a few weeks beginning at the end of the month. I'll start chemo when I'm back in August. If the chemo doesn't kill me, the anxiety/stress/depression that constantly disrupts my body and mind will. It's poisonous in and of itself. So, I need to take care of that before my body takes a beating. The goal is to learn how to achieve some balance within while also taking care of the physical - eating right, getting good sleep, avoid stress, meditate and do yoga, etc. It's a splurge, but it's also my life. I need to make peace with this journey. I'm going alone because I have to and I'm blessed to have the most amazing, supportive husband who will take care of things at home so I can take care of me.
Today I had my chemo "Teach" appointment. It's basically an appointment dedicated to discussing all of the ins and outs of my chemo plan and also have the opportunity to ask questions. I met with my oncology CNP, Kayla, who was patient, kind and compassionate. And super informative! I felt a small weight lift today after receiving all of this information. It's A LOT! That's for sure ... but it's less ambiguous and a little less scary.
For starters, I now know approximately when I'll be done - end of October. End of October I will be done! And, as we all know, there are lots of potential side effects. And everyone responds differently so I may get none, some or all. Who knows? I need to prepare myself to see how things go day by day. I feel somewhat prepared now that I had this appointment, I have my first infusion scheduled for August 20th with lab work and a tox check the following week, and then my 3 subsequent infusions tentatively scheduled depending how my body responds. Why August 20th? Well, as I mentioned in my last post, I need to get things right with my body and mind. I'm going to a wellness retreat in Sedona, AZ and I've chosen a 3-week program there. 3 weeks ... that's a long time and not a long time. A long time to be away from Jon and Eddie and Cole and Leah ... a long time to be away from my dog, a long time to be away from the office. But it's also not a long time ... not when you have chemo pending and not when you have to make a lot of life changes to make. And not when it's your life. But! I'm starting to get excited. I'm ready! And if you're interested, I'll post about my experiences here. I leave 7/29 and return 8/19. Here's a summary in descriptive words only (lol):meditation, relaxation, yoga, infrared sauna, immunotherapy, supplements, juicing, vegan food, counseling, acupuncture, and more .... :)
I'm bringing a ton of art supplies as that's the biggest form of therapy for me and I can't wait to see Sedona. I've always wanted to go and it looks so beautiful. Thank you Jon, for taking care of the Homefront so I can do this. And thank you Kristy and Jessica for holding down the Fort (my office). It means everything to me!
Happy Wednesday! It's been an interesting weekend/week so far ... last Friday I got kidney stones which really put a damper on the weekend's plans. Just another thing to deal with! I'm not sure I mentioned that prior to finding out I had breast cancer, I was working with endocrinology and urology on my newly diagnosed hypercalcemia and hyperparathyroidism. That has all been put on hold ... but my body doesn't now that! So, while trying to get a proper amount of calcium in my diet, most of it ends up in my kidneys. This is my 4th bout with kidney stones this year! It's not fun. Everyone I talk to says it's "worse than child birth". Well, the first time it happened to me, I would attest to that. That was several years ago. Now I feel the pain coming on and I know what to do. And lucky for me, I pass them like a champ. This time around ... I'm going on day 6 of pain and drinking water til I drop. Tomorrow I have a CT scan and fingers crossed I will pass them and not end up in the hospital.
On Monday, I had a port placed in my chest. The procedure was like surgery but I wasn't put fully under. It was pretty quick, easy and painless. And because they knew about my kidney issues, I got extra fluids in my IV. Not that it helped!
This morning before work I had my expander filled. I'm pretty sure I will only need one more before my surgery which had to be pushed out to the end of the year due to having to have chemo. This expander will be in me for longer than expected. Isn't that the way everything seems to go? It's why I've had to exercise much patience these past months. If all goes as planned, and it may not but if it does, I'll be done with chemo by the end of October and will have breast reconstruction surgery by the end of December. Could it be that by January I'll be back to my old self? Or at least feeling normal again? Can you all just cross your fingers for me??? I'm leaving for Sedona on Monday! I'm so so sad to leave my crew but I'm excited too. So bittersweet ... I'm not going to be cut off from the world though! In fact, Eddie and I have planned to FaceTime each other on his free nights and play our current favorite card game, Sussed? If you haven't heard of it, check it out, it's super fun. The one we have is a bunch of crazy "would you rather" scenarios and it finds us spinning off into all kinds of interesting discussions! I'll FT plenty with Jon too, of course. :)Finally, I wanted to leave you with this adorable pic - Eddie with my great niece Layton and great nephew Landon. They love their big cousin. I have a great niece Lydia too who I got to see over the weekend but I didn't get enough pics :(. Damn stones.
When it rains, it pours. I had my CT scan this morning and it turns out that, in addition to a few small, harmless stones, I have a 6mm stone on the left side. Not likely to pass it but still possible ... My urologist sent me to the ER where I waited 3 hours to get into an ER bed and now going on another 3 hours waiting for an actual room. I have been "admitted" but have to hang out in the ER. So far, the plan is to stay the night, push fluids and Flomax, and hope for the best. If I don't pass it, it will likely need to be extracted. Fingers crossed y'all!
Positives: I brought my laptop, a book, audio book, a puzzle/trivia book, my sketchbook and pens .... I came prepared! And, I'm on some decent medication for pain. And, while in the ER, I ran into some friends/clients who were great company during my wait. Not the best circumstances but it was great to see them. I hope you're doing better B!
Despite being insanely busy, the staff has been super great.Negatives: more surgery ... :( Missed my lunch date with my kid, and can't hang out with my dog in the comfort of my own bed. At least it happened now instead of Sunday night since Monday I travel. Does anyone know the status of the airline delays? I am holding out hope that my flight isn't delayed/cancelled! Just one more thing to worry about ...
Well, friends, luck wasn't on my side with the kidney stones. I'm still here in the hospital managing the pain from surgery yesterday. It was successful - they removed the stone and placed a stent. There's a really good chance I'll be out of here in a few hours but the last 24 were a blur. The pain after surgery was so, so much worse than the kidney stones themselves which I was completely unprepared for. I'm finally getting some relief but there were moments I would have preferred being knocked unconscious to dealing with the pain even on the heavy drugs they gave me. If I haven't responded to your texts/messages, that's why. I'll get there! And thank you for thinking of me! As I emerge from this challenge, the next one is hoping I can spend some time with the fam and that I don't have a nightmare awaiting me at the airport on Monday. Day at a time ...
Yesterday I was finally home - about 4pm. The pain is better but still bad. I'm sure it will be until this stent comes out (tomorrow!). I have been absolutely rung through the wringer. Kidney pain is NO JOKE! It's days like these that make it hard for me to see the other side. It's just one thing after another. :( I'm still planning to go on my trip tomorrow and realizing I need it more than ever! There will be some tough aspects about it. I need to change my diet which is sugar heavy but I am hoping after what I've been through recently, it will be easy. Eating hasn't been pleasurable these last few days anyway. It sounds like I'll be kept busy there - I'm excited to journal about it. I completed a series of videos on some of the treatments I'll be doing and while some don't sound pleasant, they all hold value. Stay tuned for the details!In the meantime, it really sucks feeling like an invalid these days. Pity party alert - I hate this helpless feeling and the pain, fatigue, etc. I've gone through it for the past 2 summers with my esophagus surgery last summer and a broken leg the summer before. Maybe I'll catch a break at some point? I have 3 foreign objects in me (tissue expander, port, ureter stent), pain that still feels like kidney stone pain, blood in my urine, swollen veins and already have had shoulder and hand pain I haven't been able to address that started 3 years ago. Come on!! Again, I know there's others who have it worse ... but I feel like it's just too much all at once and it's hard to not feel so defeated.
Thank god for Jon who is always there for me and Eddie was so sweet - he fixed up the couch for me and set up everything I needed :). We played our Sussed? game and did a Hidden Picture book page. It's a kid's book but dang, it was hard!! It is called "The Hardest Hidden Pictures Book Ever" LOLToday I'll take it easy so I can travel tomorrow. I'm taking doctors orders! I'm going to soak up time with my dogs and kid, maybe catch up on a little TV and do some drawing. Jon is at the 3M Open at the TPC with Cole so I'm happy he can have some fun this weekend after spending most of it in the hospital with me!
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