Rhandom Schittshowe Cancer Journey
| 2023-11-20: Mammogram and Ultrasound | ||
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| BILATERAL SCREENING MAMMOGRAPHY WITH TOMOSYNTHESIS\n HISTORY: Screening.\n COMPARISON: March 10, 2021.\n FINDINGS\n ACR Breast Density Category C: Heterogeneously dense, which may obscure small masses.\n No suspicious masses, microcalcifications or architectural distortions seen.\n IMPRESSION\n No mammographic evidence of malignancy. Yearly mammogram screening recommended.\n Due to breast density, supplemental breast ultrasound has been scheduled with the patient at Insight US AUTOMATED BREAST ULTRASOUND\n HISTORY: Supplementary ABUS as requested.\n TECHNIQUE: Multiple, continuous axial 1 mm image series were obtained through both breasts and\nreviewed with multiplanar reformatting software.\n FINDINGS\n Right Breast: Hypoechoic mildly irregular area measuring 6 mm at 8:30N3.\n Left Breast: No concerning solid or cystic masses.\n IMPRESSION\n 1. Questionable lesion at 8:30N3 in the right breast.\n 2. Characterization with hand-held ultrasound will be arranged.\n BI-RADS 0: Need additional imaging evaluation\n\n Note: When they called me back for additional imaging, they said that \"they didn't get a good enough picture the first time\". They didn't indicate that they saw something. I asked if it was ok if I went to Mexico for the winter (we were scheduled to leave on Dec 4), and they said sure - no problem.
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| 2024-03-04: Targeted Ultrasound | ||
| TARGETED RIGHT BREAST ULTRASOUND\n HISTORY: Followup to ABUS.\n FINDINGS\n Corresponding to findings on ABUS at 8 o'clock 3 cm from the nipple in the right breast, there is a small\nmass with irregular margins measuring 10 x 7 x 9 mm. It is wider than tall.\n IMPRESSION\n Suspicious mass in the right breast as discussed above. Biopsy of this lesion has been arranged for March\n7, 2024 at 2:30 pm.\n BI-RADS 4: Suspicious abnormality - biopsy should be considered\n This patient has findings that require follow-up or additional investigations. Attending physicians can refer\nthis patient to the Comprehensive Breast Care Program (CBCP), Alberta Health Services and Covenant\nHealth. The program supports physicians and patients through the diagnosis and care of breast disease.\n Note that when I went in for this targeted ultrasound, I felt like I was the only person in the room who didn't know that I was there because they \"saw something\" in November. | ||
| 2024-03-07: Biopsy | ||
| US BREAST BILAT AXILLA BILAT\n HISTORY: Right breast 8N3, 9 x 6 x 8 mm solid mass. Query malignancy.\n FINDINGS\n Lobulated, hypoechoic mass in the right breast at 8N3 measuring 9 x 6 x 8 mm.\n No other suspicious mass in the right breast.\n No suspicious mass within the left breast.\n Axillae: There is no adenopathy.\n ULTRASOUND-GUIDED BIOPSY BREAST RT 1 SITE\n Technique: Ultrasound-guided large core biopsy.\n Informed written and verbal consent were obtained after risks and benefits of the procedure were\nexplained.\n Under sterile technique and local anesthesia, samples were obtained as follows:\n Right breast, 8 o'clock, 3 cm from nipple\n Dimension of Lesion: 9 x 6 x 8 mm\n Core Samples: 4\n Biopsy Marker: No clip placed.\n Associated Calcification (TR, AP, CC): None
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| 2024-03-13: Diagnosis | ||
| SUMMARY OF PATHOLOGY: Invasive ductal carcinoma.\n Radiology-Pathology: Concordant.\n BIOPSIED BREAST MASS AND/OR ARCHITECTURAL DISTORTION\n Lesion #1\n Side: Right\n 8 o'clock, 3 cm from nipple\n Size: 9 x 6 x 8 mm\n Multiple Lesions: No\n AXILLA\n Suspicious Lymph Nodes on Ultrasound: No adenopathy.\n RECOMMENDATIONS/FOLLOWUP:\n Lesion in the right breast at 8N3 corresponds with invasive duct carcinoma and surgical referral is\nsuggested. ER+ = 5 (moderate)\n PR-\n HER2+ = 3+ (high)\n Grade: 2\n Stage: ??
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| 2024-03-14: Call from GP | ||
| GP phoned to notify me of diagnosis | ||
| 2024-03-17: Pathology Report | ||
| A. Left breast, mastectomy:\n - Benign breast tissue with focal fibrocystic changes, periductal chronic inflammation, apocrine\nmetaplasia, and stromal fibrosis\n - Focal intraluminal calcifications\n - Benign overlying skin with focal hemangioma and seborrheic keratosis\n - Small portion of attached benign skeletal muscle\n - Negative for atypia or malignancy\n B. Right breast, mastectomy:\n - Invasive ductal carcinoma, NOS; Nottingham grade 2/3\n - Maximum size: 9 mm\n - Background ductal carcinoma in situ (DCIS), estimated field diameter at least 20 mm\n - All surgical resection margins negative for malignancy\n - AJCC stage: pT1b-pN1a(sn)\n C. Lymph node (right axilla sentinel node #1, reading 8740), biopsy:\n - One of two lymph nodes positive for metastatic carcinoma (1/2)\n - Maximum size: 4 mm\n - Negative for extranodal extension\n D. Lymph node (right axilla sentinel node #2, reading 980), biopsy:\n - Two benign lymph node (0/2)\n - Negative for malignancy | ||
| 2024-03-22: Surgeon Consultation Scheduled | ||
Comprehensive Breast Care Program provided a LOT of information, and scheduled surgical consultation. They gave me a 60+ page document of information of what to expect, including... a FLOWCHART! There's almost nothing I love more than a good flowchart. I keep the flowchart handy and refer to it often.
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| 2024-04-01: Surgeon Consultation NUDES | ||
| Scheduled double mastectomy with flat closure and no reconstruction for May 1. I thoroughly researched the surgery options. My preferences for surgery are:\n 1) Double mastectomy with (1) Aesthetic Flat Closure, (2) Regular Flat Closure, (3) Fat Grafting or (4) Goldilocks\n 2) Lumpectomy with radiation\n 3) DO NOT WANT: Unilateral mastectomy, Implants\n I wasn't sure how hard I would have to push to get flat closure. Turned out that, with my surgeon, there was no pushing required - she respected my decision and described how she would achieve aesthetic flat closure.
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| 2024-04-03: Told my Mom (and Facebook) | ||
| I told a couple of friends when I was diagnosed, but other than that I was keeping it tight until I could tell my mom in-person. I didn't want to tell her over the phone or on video. We had some shite weather that kept Brent and me from driving to Red Deer, so the waiting was longer than I had hoped. Telling my mom was harder than getting my diagnosis. Ugh. But, once Mom knew, then I started posting on Facebook. I'm coping largely with inappropriate humor. One of my favorite things to do is dream up \"alternative prosthetics\" that I'm going to get in place of my boobs. Here are some favorite ideas:\n - Bicycle repair tools on retraction chains. \n - Beer taps (would require a backpack with two bladders to hold different types of beer). \n - Laser pointers (to play with cats). \n - “Bang” flag guns\n - Tasers (to protect from robbers) Facebook Post:\n There's no good time, and no easy way to drop bad news, so I'm just going to \"out with it\". \n On March 14, I was diagnosed with breast cancer. On May 1 I will be having a double mastectomy with aesthetic flat closure and no reconstruction. This was not required - I could have had a lumpectomy and radiation, but I chose to go flat. Just wait 'til you see how much faster I'll be at hiking and cycling after... \n About two weeks after that I will find out if the cancer has made its way into my lymph system, which will determine what kind of additional treatment I’ll need (for example, chemotherapy).\n I was waiting to \"go public\" with this news until I could tell my mom in person, which I did earlier today. Telling my mom was as bad as, or maybe even worse than, getting the actual diagnosis. \n Brent and I are coping well, and are leaning heavily on (1) our wonderful community of friends and family, and (2) inappropriate humor about my situation. I'm happy to speak openly about it if you have questions, and I'm especially delighted to welcome some inappropriate humor about it. My favorite so far is to talk about which \"alternative prostheses\" I will get afterwards. So far the front-runners are:\n - Bicycle maintenance tools on retractable chains\n - Beer taps (which would require my wearing a backpack with two separate beer bladders so that I could dispense two different kinds of beer)\n Some of our other ideas are: laser pointers (to play with cats), tasers (to protect from robbers), movie projector, jack in the box. Please send more suggestions if you have any.\n The next time you see me after May 1, you may notice something different about me (or… I mean… maybe you won’t). Hint: I did not get a haircut and I did not get new glasses. \n I am going to go ahead and assume that you all feel bad for me. I am grateful for all of your support and concern, but please try to keep to positive messages, and inappropriate humor (about my situation). I will take every positive vibe you have to send, but sympathy just makes me feel worse, so please keep it light until further notice. Thank you. ?
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| 2024-04-04: Surgery Rescheduled | ||
| Surgery Rescheduled\n Surgery rescheduled from May 1 to April 17. YIKES! I'm not ready! I've scheduled a \"Bye Bye Boobies\" party for the end of April. | ||
| 2024-04-10: Sassy T-Shirt Brainstorming | ||
| Facebook Post:\n Ok so get your creative brains on. I want to come up with a collection of explanations for where my boobs are. \nA selection of the ideas so far:\n - I laughed them off (Vee)\n - I forgot them on the bus (me)\n - I lost them in a poker game (me)\n Lots of suggestions poured in... stay posted for the final selections. | ||
| 2024-04-14: Time is Running Out! | ||
| Facebook Post:\n No one has ever looked at my boobs. TIME IS RUNNING OUT PEOPLE! | ||
| 2024-04-16: Radioactive Boob | ||
| Radioactive injection to identify Sentinel Lymph Node(s)\n HISTORY: RIGHT BREAST CA\n TECHNIQUE: Utilizing aseptic technique, 172 MBq of technetium 99m antimony sulfide was injected in the\nupper outer periareolar\nintradermal and retroareolar right breast. The patient tolerated the procedure well and no immediate\ncomplications were\nidentified. No images were acquired. Facebook Post:\n Got the radioactive boob injection this morning. No superpowers, though. The Alberta health system is so lame.
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| 2024-04-17: Double Mastectomy NUDES | ||
| Double Mastectomy\n Arrived at Sturgeon at 6AM. \n Came out of surgery with zero breasts and four drains. \n Minimal pain – managed with ibuprofen and acetaminophen.\n Home by 16:00-ish Facebook Posts:\n I’m out of surgery. Have to wait about two hours for the all clear to leave. Four drains. Yuk!!\n Q from Kim: How's the pain? Is the medication working well? Rhonda: pain is minimal. I’m managing with ibuprofen and acetaminophen. No prescription pain killers needed. Yay! Kim: wow, you really are amazing. You're my hero. Rhonda: I'm no hero. I just come from a family with addiction problems and I'm more afraid of addiction than I am of some pain.
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| 2024-04-18: Ta ta, Tatas | ||
| Facebook Posts:\n Doing well and happy to be home. Very grateful for my \"Brentcare\" service. Minimal pain - managed with ibuprofen and acetaminophen (no prescription painkillers needed yet). Four drains which are cumbersome, uncomfortable and... gross. Can't wait to get those out! \n
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| 2024-04-22: Outer Dressings Removed, More t-Shirt Brainstorming NUDES | ||
| Outer Dressing Removal\n Today I was allowed to remove the outer dressing, which I did. It was kind of anticlimactic, though, because the steri-strips are still on, so I still can't see my incision/scar. Switched from around-the-neck drain holder to hip holster and diaper pins. Facebook Post:\n I think I'll get some fabric markers and convert some of my plain t-shirts to sass. Here's my list of possibilities. Do you have something to add? Which of these do you like best? I think the first two are the most \"me\".\n - Does this mastectomy make my butt look big?\n - Nothing to see here\n - #LMTO Laughing My Tits Off\n - I've got 99 Problems but My Tits Ain't One\n - Can You Help Me? I Lost My Boobs\n - Bored titless\n - Yeah, they are gone. They tried to kill me\n - Dude where are my boobs?\n - Not today cancer\n Lots of thoughts and suggestions poured in. Stay tuned for final results - two sets of t-shirts created.
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| 2024-04-25: One Drain Removed | ||
| Drain Removal\n Brent has been helping me drain my drains and record the amount every eight hours since my surgery. Today I was able to have one of my drains removed. Homecare came by to take care of it. It's nice to have one drain gone, but I'll be happier when they're all gone. Facebook Post:\n And then there were three… it was a good day today.\n Photos below are the bottles they gave me for collecting the stuff from my drains. One drain went away today. I would have been happier with all of them going, but I’ll take one.
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| 2024-04-28: Weird and Lumpy | ||
| Facebook Post\n I’m 11 days post-op and something that I find odd, interesting and freaky is how lumpy everything is. \n My ’flat’ chest is just…lumpy. The top of my sternum feels like I have a Klingon forehead under my skin and my rib cage feels like a Cardassian face. I guess this description is only for Star Trek fans. | ||
| 2024-04-30: Surgery Pathology Results, Monthly Mom Messages | ||
| Surgery Pathology Results\n A. Left breast, mastectomy:\n - Benign breast tissue with focal fibrocystic changes, periductal chronic inflammation, apocrine metaplasia, and stromal fibrosis\n - Focal intraluminal calcifications\n - Benign overlying skin with focal hemangioma and seborrheic keratosis\n - Small portion of attached benign skeletal muscle\n - Negative for atypia or malignancy\n \n B. Right breast, mastectomy:\n - Invasive ductal carcinoma, NOS; Nottingham grade 2/3\n - Maximum size: 9 mm\n - Background ductal carcinoma in situ (DCIS), estimated field diameter at least 20 mm\n - All surgical resection margins negative for malignancy\n - AJCC stage: pT1b-pN1a(sn)\n \n C. Lymph node (right axilla sentinel node #1, reading 8740), biopsy:\n - One of two lymph nodes positive for metastatic carcinoma (1/2)\n - Maximum size: 4 mm\n - Negative for extranodal extension\n \n D. Lymph node (right axilla sentinel node #2, reading 980), biopsy:\n - Two benign lymph node (0/2)\n - Negative for malignancy Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's April 2024:\n
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| 2024-05-01: Remaining 3 Drains Removed, Rhandom for Rhandom poem from Scott | ||
| Drain Removal\n Homecare stopped in to remove the remaining drains. One of the ones from the left was really freaky - it snaked all the way across my body and looped around. There was a LOT of tube inside of me. It's great to have it removed - I think some of the tightness on my chest, and the weird \"cord\" feeling things were all that drain! Facebook Posts:\n So, I got my pathology results yesterday. The cancer has spread into my lymph system, so I'll be signing up for more of a fight than I was hoping for. According to the AHS roadmap, I will see an oncologist in 6-10 weeks, which is quite a long wait, but it might afford me the ability to still volunteer at the Fringe this summer. We'll see.\n Drains are all out. One of them was freakishly long - coiled up inside me. There was more than a foot of tube inside. Creepy as **insert profanity of your choice here**. I’m wearing a t-shirt! Yay! And the Klingon forehead and Cardassian face are gone - it was all drain tubes! Rhandom for Rhandom Scheuer - Poem from Scott Alderson:\n Worst news arrives with snow\n another May day they say \n but who are they?\n and who invited them to speak?\n we laugh on big decks\n eat Teen burgers and Mozza's\n talk about everything \n My friend faces obstacles \n uncertain outcomes \n as if life was predetermined \n we all stumble sometimes \n like when the Neurologist \n sat me down and dropped \n life changing diagnosis \n prognosis not pleasant \n My friend wears bravery\n like a thrift store suit\n takes microwave popcorn \n to her x-ray appointment \n pop, pop, pop\n teasing technicians \n with a smile on her face\n distraction reaction \n Returned from Mexico \n returned her breasts\n difficult decisions decided\n wish her all the best\n with futures open wide\n soon Sunny skies\n we who call her friend\n clap hands as she takes the stage. | ||
| 2024-05-02: Sassy T-Shirts #1 | ||
I had some convalescing projects set up for myself before my surgery. Then, after surgery, I got inspired to make some sassy t-shirts. I used some of my own Merino and Bamboo shirts, and fabric markers to make these.
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| 2024-05-07: Surgeon Follow-Up and Seroma Drain NUDES | ||
| Surgeon Follow-Up\n Saw my surgeon at the Sturgeon. She removed my steri-strips, and drained ~60ml of fluid from seromas on both my right, and left, sides. Facebook Post:\n I didn't know how to interpret that I had a 4mm tumor in my lymph node. After meeting with my surgeon, I have more information, and it's not good. Generally, breast cancer tumors don't start spreading until they're over 2cm. Mine was only 1cm, so they didn't even expect a lymph tumor at all. My tumor was HER2+, which means it was aggressive. Aggressive enough, apparently, that my surgeon called me \"special\", and has now lined me up with a bone scan on Monday. Breast cancer that mets to bone is really bad, so I'm hoping that hasn't happened.\n Am I doing my best to be positive and stay on the humor train? Absolutely yes. Am I scared and sad? Also yes.\n I know it's hard to know what to say to someone dealing with cancer. I was struggling with that myself not that long ago. So, here's a little PSA that might help (see photo below). Also, keep in mind that if you don't know what to say to me, an inappropriate joke about my missing boobs is always a winner. Thanks for all your support. \n PS… random swearing is good too.
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| 2024-05-08: Sassy T-Shirts #2 | ||
I enjoy my first set of t-shirts so much that I decided to do a second set. These will probably be the last ones.
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| 2024-05-10: More Appointments Set Up and COVID Booster | ||
| Comprehensive Breast Care called with next round of appointments:\n - May 13: Bone scan: looking for mets to my bones \n - May 17: Heart echocardiogram: baseline for check-ups every three months during treatment\n - May 21: Oncology Consult at the Cross - first meeting with oncologist\n - June 13: CT Scan – abdominal and pelvic Alberta announced that they're offering COVID boosters for seniors and immunocompromised. I phoned to make appointments. I don't meet the age requirement, but I explained that I'll be having chemotherapy, and they booked us both in. When we got to Safeway, I again had to answer why I was getting the booster, and when I told them I would be getting chemo, they took me no problem. I'm happy. If we can avoid getting COVID while I'm getting chemo, that will be good. Facebook Post:\n Because my cancer is so aggressive, they're loading me up with medical tests and appointments. If you've been curious about what's happening and when, here's some info. \n - May 13: Bone scan: looking for mets to my bones\n - May 17: Heart echocardiogram: looking for mets on my heart\n - May 21: Oncology Consult at the Cross - first one\n - June 13: CT Scan - looking for mets... somewhere... not sure where exactly - maybe my chest wall?\n I am still hopeful that I'll make it to brunch theatre with Brent, Rob, Sherri and Ken on June 2, but it is looking less likely that I'll be ok to volunteer at the Fringe this August. We'll see.
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| 2024-05-11: Bye Bye Boobies Gathering #1 | ||
I had planned to have this gathering BEFORE my double mastectomy, but then that got moved up, and this had to get moved back. It was great to see lots of my \"support people\" over two afternoons, including some amazing Boobie cupcakes, made by Save-On Foods.
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| 2024-05-12: Bye Bye Boobies Gathering #2 | ||
Another great visit with supporters - unfortunately, no photos from today other than the cupcakes
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| 2024-05-13: Bone Scan and Seroma Drain | ||
| Bone Scan:\n Clinical History:\n Positive lymph nodes. Query mets.\n Relevant Priors:\nNone available\n Technique:\n 740 MBq 99mTc-MDP injected IV. Other imaging technical parameters are available upon request at\n 1-844-642-4723 (1-844-MIC-4RAD). \n Whole body imaging, multiple planar views of the [thorax.\n Findings:\n There is no focus of abnormal uptake identified. Specifically, no evidence of metastatic disease.\n Minimal activity is seen within peripheral joints typical of minor osteoarthritis.\n OPINION:\n No evidence of bony metastases.\n Saw my surgeon at the Sturgeon. She drained ~40ml from a seroma on my left (the right one is gone). Facebook Posts:\n Bone scan today. Calgarians and Red Deer-ites, if you see a radioactive glow in the north, it’s the Arhonda Borealis (Thanks to Laura for that bad joke.\n Results so fast… no evidence of metastatic disease in my bones. One down… ??? to go. Whew.
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| 2024-05-15: Discharge from Comprehensive Breast Care Program | ||
| Today I was discharged from the Comprehensive Breast Care Program and I will now be under the care of the Cross Cancer Institute. | ||
| 2024-05-17: Echocardiogram | ||
| Had to jab me three times to get a vein for the radioactive stuff. Ugh.\n\n Interpretation Summary\n Normal LV size and systolic function, EF 59%, GLS -21.3%\n Normal RV size and systolic function\n No significant valvular dysfunction Facebook Post:\n Echocardiogram today. Wish me luck - hopefully they don’t find anything. I had a brain scan when I was 21 and they didn’t find anything then, so…….
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| 2024-05-21: Oncology Consult - Postponed | ||
I picked up a head cold a couple of days ago. I tried to sleep it off, but didn't get there in time. Phoned them and they postponed my appointment. I'd hoped maybe we could do it over Zoom or something, but nope.
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| 2024-05-29: Seroma Drain - NUDES | ||
Saw my surgeon at the Sturgeon. She drained ~62ml from left seroma. Average 30ml/week, since I skipped last week.
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| 2024-05-31: Monthly Mom Messages | ||
| \nMonthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's May 2024:\n
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| 2024-06-04: Oncology Consult | ||
| Met with Oncologist. Proposed treatment schedule:\n Chemo and Herceptin - six treatments starting June 14, every three weeks.\n Radiation - regime TBD, start approximately October\n Herceptin - Continue with Herceptin every three weeks for another eleven treatments\n Five years of Letrozole\n\n One of the supplemental treatments is an injection taken post-chemo each time. It boosts your white blood cell count to help you fight off other infections. The injections cost about $2000/ea. They will refer me to the ANSWERS program for coverage for these injections.\n\n Met with Pharmacist. I have no prescription meds, and I have no problem pausing most of my supplements during treatment. I want to continue taking Berberine. She said that she didn't really want me to take it, but if I really wanted to, I should inform the chemo people because it would probably affect the metabolization of one of my chemo drugs.\n Met with representatives from two different studies. Signed up for the studies:\n - How many calories are required by a person undergoing chemotherapy?\n - Look for relationship of a certain virus to breast cancer Facebook Post:\n This is a beautiful song, and a great message for myself today. I've been stressed out and spiraling a bit the last couple of days. I'm mostly ok with feeling crappy for a year(ish) but I'm terrified of the ten-years of feeling crappy program that they're probably going to recommend. \n Somewhere over the Rainbow - Israel \"IZ\" Kamakawiwo?ole Facebook Post:\n I just got out of my oncology consultation. \n They’re going to give me six rounds of chemotherapy plus Herceptin (which is the drug which targets my aggressive cancer - the HER2+ thing). They’ll be three weeks apart, so it will go until the end of September. Then they want me to do some radiation and eleven rounds of Herceptin (without chemo), which would mean Brent and I would have to skip Mexico next winter. He said that I could quit the Herceptin early to go to Mexico - he said he thinks I will probably have had enough of it by the end of the year. Then they want me to do five years of the hormone blocker drug. It’s not the one that I’m really scared of (Tamoxifen), but I’ll have to look up the one he said. \n I’m going to wait until I’ve had my first round of chemo, and have gotten word as to whether I’m eligible for subsidization on a white blood cell booster injection that should help me get less sick during chemo before I decide if I have to drop out of volunteering at The Fringe in August. The injections cost $2000/each, though. Brent says he’ll pay for them if I can’t get subsidization but I don’t know… I hope i can get the subsidization. \n I have to go to ‘chemo class’ next Tuesday then I have my first round of chemo and Herceptin next Friday. \n That’s it for now. I’ll keep you posted.
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| 2024-06-05: ABC NG Application | ||
| I have been prescribed some injections to follow each chemo-infusion that will boost my white blood cells, but the injections are really expensive (approximately $2000/shot). I can probably get coverage for these, but in order to be eligible, I have to apply for Alberta Blue Cross Non-Group Coverage, which takes three or four months to take effect. I ran out to AMA this morning to apply for that. The supplemental funding will cover it until Blue Cross kicks in. Facebook Post:\n Some statistics - 10-year survival rate - for y'all:\n Surgery Only: 84% (So, I'm already here)\n Chemo: +2% (seems like a lot of torture for just 2%, but whatevs)\n Trastuzamab (targets HER2+): +1%\n Bisphosphonates (protects bones): +1%\n Hormone Therapy: +3%\n So, possible total is 91%, however, for the general population, the possible total is only 93% (meaning, folks would be dying of other stuff over ten years anyway), so the treatment gets me close to the same survival rate as the general population. \n I am probably not going to do the hormone therapy. I react very badly to hormone drugs, plus I already take Berberine to help manage my blood glucose, and it has been identified as a very effective treatment for estrogen-positive breast cancer (the reason why they want me to do hormone therapy). I tolerate Berberine very well. This is a decision that I'll kick down the road - it doesn't need to be decided until next year anyway. Maybe I'll end up trying the drug and see how it goes before I make a decision.\n\n EDIT: June 13: I discovered that these stats are only relevant if your cancer has NOT metastasized. Not sure how that's helpful, given that they can never really be sure (until years later) whether it has metastasized. They can look for mets, but there's always a chance of one tiny cell eluding them, and... mets. Facebook Post:\n I’m so grateful to all of you for your support - I appreciate all of it. ?\nI was spiraling hard on the weekend and I want to say thanks to Elissa, Sharon and Barbara for getting me out of my head and leveled out. ? ? ? \n If I didn’t call on you personally this time… don’t worry… your turn is coming!! | ||
| 2024-06-07: Approval for Funding - Expensive Pokes | ||
| I have been prescribed some injections to follow each chemo-infusion that will boost my white blood cells, but the injections are really expensive (approximately $2000/shot). I had a phone call today to confirm that I will be covered by the ANSWERS program for these shots until my Alberta Blue Cross Non-Group kicks in (I was instructed to apply for that to cover the shots, but it takes three or four months for that to take effect). Facebook Post:\n Legendary Ed always used to say that you need to have something to look forward to. \n In the spirit of doing just that, I want to plant the seed of a ‘cancer treatment is over’ celebration easy backpack trip for summer of 2025. \n Backpacking friends, please ‘save the date’ and let me know if you have suggestions for a trip. I’m thinking of that campground on the north shore of Upper K Lake. Elbow Lake is also a possibility but I think it attracts more partying yahoos. | ||
| 2024-06-10: Follow-Up With Oncologist | ||
Got a call from my oncologist today. He was supposed to call on Wednesday, but this is better (Wednesday I'm planning on going to Red Deer). He wanted to make sure I've reviewed all of the documentation, gotten set up with funding for the expensive pokes, etc. He said that I will not be meeting with him again - I'll meet with his team of doctors (which I will hereafter call his Minions) instead and he will consult only as necessary. Interesting...
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| 2024-06-11: Bone Density Test and Chemo Class | ||
| Bone Density Test\n 1. Low bone mass. \n 2. Low fracture risk (<10% 10 years). \n 3. Since the prior study, there has been a significant decrease of 0.118 g/cm2, 8.3% change in the lumbar spine. There has been a significant decrease of 0.059 g/cm2, 5.5% change in the total hip. \n 4. Suggest lifestyle and nutritional modifications. \n 5. Recommend follow-up in 3 years, ideally performed on the same DXA equipment. \n 6. There has been an decrease in weight of more than 10% Chemo Class\n In-depth coverage of booklet, \"System Treatment: Chemotherapy, Targeted Therapy and Hormone Therapy\". Teaching via multiple methods is good - booklet for those of us who read booklets, class for those of us who don't.
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| 2024-06-13: CT-Scan: Abdominal and Pelvic, Seroma Drain, Start Anti-Nausea | ||
| I have shy veins. My left ones have always been worse than my right ones. Now that I’ve had lymph nodes removed from my right side I’m not supposed to have anything at all done on the right so the only place I can get needles is on the left. \n\n When I went for the bone scan three weeks ago it took them three jabs to get one of my veins for that IV. It was pretty awful. \n\n Today I went for a CT scan. Brent has been coming in with me for most of my medical things. When the nurse came to get me I asked if Brent could come with and she said no, she’s just giving me a poke. \n\n She was the first step, which is to get an IV put in. I told her I have shy veins. She poked at them to try and get one up, and then put a heating blanket on my arm for a few minutes. Came back and chose a vein on the inside of my elbow but couldn’t get it up to her satisfaction so she decided on one to the side of the inside of my elbow. \n\n She jabbed the needle in and it hurt like crazy. She kept pushing it in and it hurt more. Then she kept pushing it in more. It was so bad. Then she says ‘I’m sorry but I think your vein collapsed and I’m going to have to pull it out and try again, is that ok?’ Well, what can I say to that? Of course. So she pulled it out and I started crying. Oh myyyyyy. It wasn't really about the IV... I'm really dreading the chemo tomorrow, and that bubbled to the surface, especially considering I would have to go through the IV ordeal again first thing tomorrow.\n\n She asked me if I wanted Brent to come in. I said yes so she went to get him but she didn’t tell him why. He came in the room and stood across from me and then noticed I was crying and exclaimed, ‘Oh Jesus!’ He scurried over to me and hugged me from the side while she jabbed into yet another vein. \n\n She said if I wanted I could keep that IV until tomorrow because chemo uses the same size of IV. I accepted, which I think is the lesser of two evils. So now I have to spend the next 25 or 26 hours with an effing IV in my arm. \n\n I'll confirm tomorrow that my 11 Herceptin-only treatments (after chemo) can be done through a port, and if they can, I'll be asking tomorrow to get a port installed for the remaining chemo, and the 11 Herceptin infusions. After the CT Scan, Brent and I went home for breakfast (and I started taking the anti-nausea meds), then went for a quick walk at St. Albert Botanical Park, then went off to get my seroma drained.\n This was my biggest drain to date (since my drains came out) - ~70ml. My surgeon wants me to start using compression to prevent the large seroma from occurring. The nurses wrapped two tight tensure bandages around my chest, and found a \"breast binder\" to give me to use until my body starts absorbing the fluid. Ugh.
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| 2024-06-14: Chemo + Herceptin Infusion 1 | ||
| Chemotherapy:\n Approximately 6-hours in the chair, with approximately 4 hours of that receiving infusions.\n Received:\n - Trastuzumab (Herceptin): a type of targeted cancer drug called a monoclonal antibody. Targeted cancer drugs work by 'targeting' those differences that help a cancer cell to survive and grow. It is a treatment for cancers that have large amounts of a protein called human epidermal growth factor receptor 2 (HER2). Received a \"loading dose\" of Herceptin for 90 minutes, followed by a 90-minute \"observation\" period.\n - Carboplatin: a commonly used, platinum-based chemotherapeutic agent. Wore the McGyvered cold packs for hands and feet. They started me slowly for fifteen minutes in case of reaction, which, thankfully didn't happen.\n - Docetaxel: an antineoplastic agent used in the management of multiple metastatic and non-resectable tumor types. It is a newer agent from the taxane family. Last call for chemotherapy. About 45-minutes of the cucumber sandwich with the crusts cut off of chemotherapy.\n\n All three of these drugs can cause neuropathy Big Facebook Post\n Here it is. A day that I dread more than any other day I can remember. It’s the day that I willingly, under my own power and feeling strong and healthy, walk into the place where they’re going to repeatedly, over the course of months, poison me to ‘almost death’ to save me from a disease that I cannot see or feel in me. Intellectually I know it has to happen. I have to do this. But it’s tough, and so awful. \n I'm sorry if this comes out as dramatic... it's kinda how I'm feeling today. Please read to the end of this post for a request - how you can all help me. \n Brent and I have done everything we can to squeeze out as much fun as we can every day since I was diagnosed. If I just… didn’t go… to the hospital today, I could keep on having all the fun. Well, until I couldn’t and it would be too late. \n So I will walk in today. Willingly. To get poisoned. In the hope and expectation of future fun.\n As I go through this process, my main request of you all is to not check in to see how I’m doing necessarily… I have no problem sharing that, as you've all seen. What I want from you all is to share your good times. Your adventures. Your fun and funny times. Your outdoor times. Beautiful places you've been, and things you've seen. And your humor. \n Sending support and checking in are lovely, and much appreciated. But it also has the unfortunate, and unintended (I hope) consequence of being a constant reminder that I have cancer - sometimes in my happiest moments. What I would truly prefer is that you single me out - tag me in a post, or post on my wall, of something good you’ve experienced, something that has entertained or engaged you. \n Thank you all for your support. ? Questions for Chemo Nurse\n - Staging: Should receive a stage after CD scan results in about one week\n - Strongly recommended against taking the Berberine as it can impact the efficacy of the chemo, and I don't want to do the chemo for nothing. Well, chemo nurse, you're absolutely right about that, so to my dismay, I will halt taking the Berberine for now.\n - Chemo port - she has put in a requisition for me to get one and I should receive a phone call soon about getting it.\n - Senekot safe? Yes.\n - Frequency of testing for mets - ask the oncologist\n - Predict website - survival stats - ask the oncologist
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| 2024-06-15: Expensive Poke | ||
| Well, unless one of the chemotherapy side-effects is \"keep on feeling perfectly normal\", I haven't started getting side effects yet. I've heard the fatigue, etc, normally starts 3-5 days after treatment, and hair loss about two weeks in, so I guess I still have some stuff to look forward to. \n\n Photos from yesterday included here, because yesterday is full of pre-chemo-fun photos. During my infusion, I wore some McGyvered hand and foot cold-packs. I wasn't even sure I'd want to use cold packs until the last second, and I couldn't find anything local, and didn't have time to order online, so I McGyvered.\n We tried a few different strategies before I found a system that worked. I had brought ALL the cold stuff from the freezer, so we had lots to try. \n For my feet, we got it right on the first try. Pre-frozen fluffy \nsocks, over protective Rhino socks (nothing special, just thin socks with Rhinos on them)\n Getting the hands right was a little trickier, largely because of the placement of the IV on my left hand. I wanted to do pre-frozen socks on them too, but there was no way I could get one on my left without lots of ouchiness. So, we tried making \"bowls\" from dry fluffy socks with frozen stuff inside. First tried mini plastic ice cubes, but they lost their cold REALLY fast. So, swapped for small plastic cold blocks, but they didn't really deliver the cold to all my fingers evenly or easily. Lastly, tried gel packs, and they worked just fine. They do lose their cold relatively quickly, but since I only need them for the one drug (Carboplatin - one of the chemos), but not for the Herceptin or the Docetaxel, they should be just fine. \n I think I'll stick with the McGyvered cold packs instead of ordering expensive stuff online. I'm pretty sure it works just as well, if not better. Facebook Post:\nPSA: Apparently they're slowing down on the advice to do regular self-exams. They're just not that effective, apparently. I would never say don't do them... what I am saying is DON'T SKIP THE SCREENING. No one could feel a lump on me - not me, not the experts. My tumor was found only through screening. Facebook Post:\n I had my first chemotherapy yesterday. It was no fun, but it wasn't awful. She had to give me a new IV, so I kept the previous day's uncomfortable IV in for nothing. Sigh. The second most disappointing thing - the chemo ward had an active COVID outbreak, so we had to wear masks the whole time. \n Anyway, this post is about thanking you all for your support during this time. Support from you all is very important to me and makes me feel loved and much less anxious, and I'm so grateful.\n I also want to say a huge thank you for how adaptable you've all been when I've expressed HOW I would like to be supported. We're all figuring this stuff out together - me, as the \"person with cancer\", and you as the \"support team for your person with cancer\", and I just can't say enough how much I appreciate it that you're willing to grow and adapt with me as I go through this and learn how I want to be supported. \n If you missed my request yesterday about how I'd like to be supported, you can see it on DAMDetails.\nIf that's just too much, and you just want to say something supportive and move on with your day, I get that, and it's perfectly understandable. Supportive words are always appreciated. Here's a handy guide for saying something supportive to your person with cancer. It's not just for me personally, feel free to use it on any of your people who need support - this is a much used and published guide. \n Facebook Post\n Some of you have commented on my \"approach\" to what's happening to me - specifically the \"over-sharing\" on social media. I know I often do things different from many other folks, and I find that interesting, so I took the liberty of making this \"Top 10\" list of why I'm sharing the way I am.\n\n - 10 - Reassure my peeps that I’m still the same old crass weirdo they know and love\n - 9 - Actively seek and receive support from my peeps\n - 8 - Spread the support duty around. Brent does so much for me, and I’m leaning on him hard, but apparently I need a lot of ‘attention’ and I can’t expect him to do it all (entirely my words, not his - he'd seem perfectly happy doing it allll)\n - 7 - Invite people to participate in an easy and collaborative platform\n - 6 - Have a record of my state of mind and what I went through because I will certainly NOT remember\n - 5 - Invite people to participate as much, or as little, as they want. It is all welcome and all appreciated. \n - 4 - Keep my denial in check - I need constant reminders that this is really happening\n - 3 - Educate people on what it’s like to go through cancer. Many people keep their experience tight and don’t share much, which is totally fair. But it makes it harder for the rest of the folks to know how to support their person with cancer\n - 2 - Provide some much needed distraction - keep me from ruminating too much\n\n AND THE NUMBER ONE REASON WHY I'M POSTING ON SOCIAL MEDIA:\n - People \"have to\" laugh at my jokes. Even the suckiest ones.\n
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| 2024-06-16: Gratitude Post | ||
| Facebook Post:\n Although I am dreading the onset of chemo side-effects (when they really start to come on), and I'm nervous about the future, I'm also very grateful for the life I've had, and hope to continue having.\n\n Today I'm feeling very grateful that, so far, the rain is keeping the fires in check and I can go outside. That is so important for me all the time, but especially when I'm trying to avoid exposure to people who are ill, I still have the opportunity to see people. Come see me if you can. <3 Facebook Post:\n Another thing I'm grateful for today - YouTube videos for physio and exercise. My favorite of the day is this Tai Chi video. I've always thought Tai Chi was beautiful, and I wanted to try it, but it took cancer to get me started.
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| 2024-06-17: First Side Effects | ||
| Facebook Post\n Annnnd... here come the side effects. I was feeling mostly ok this morning until a sudden and ferocious wave of sweating and nausea. It cleared up almost as quickly as it hit, and way too soon for the \"as-needed\" nausea pills Brent grabbed me to have been the solution. \n\n In better news, we had a pretty great day yesterday. We picked up some flowers to put in the baskets that will hang over the fence, and had a lovely video visit with some friends.\n\n Have a fun day and tag me in something more awesome than sudden and ferocious waves of sweating and nausea. :)
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| 2024-06-18: CT Scan Results | ||
| CT Scan Results\n No intrathoracic lymphadenopathy is present.\n No pleural effusions are seen.\n No suspicious pulmonary nodules are seen.\n No suspicious focal liver lesion. Diffuse nonuniform fatty infiltration of the liver is observed.\n No significant abnormalities involve the kidneys, adrenals, spleen or pancreas. Tiny\nsubcapsular splenic hypodensities slightly increased compared to 2017 and of doubtful\nsignificance.\n No abdominal or pelvic lymphadenopathy are seen. No ascites.\n No aggressive focal bone lesion.\n CONCLUSION: Thin-walled left axillary seroma. No evidence for metastatic disease. | ||
| 2024-06-19: Day at the Cross | ||
| Facebook Post:\n Got my CT Scan results yesterday. No mets found in my guts. No mets found (previously) in my bones. So, no Stage 4 diagnosis for me. What a huge relief to not be \"riddled\" with tumors. Facebook Post\n TRIGGER WARNING: anger, fear and sadness on this post. Feel free to skip over it if you want. \n\n Last Friday I posted about being emotional about going in to be deliberately poisoned. Well, let me tell you, it’s every bit as good as I expected, and I expect it to get worse with each infusion. \n\n As you know I love to travel and adventure and hike and bike and just get out and do stuff. I’ve worked pretty mindfully at maintaining my fitness level so I can keep it up as long as possible. \n\n I am not genetically gifted like Legendary Ed, and the last few years I can feel very noticeably that my strength and fitness have been declining. I could feel my window of opportunity closing very quickly and I knew I’d have to get on doing the things I want to do before I can’t anymore. I’ve had some conversations in my head about adjusting my expectations down about how many more big things I’ll be able to do. For example, I decided that, instead of trying for 10+ more European cycle tours (yes, we see lots of 70-somethings and 80-somethings touring, so it wasn't an unrealistic expectation... back then), I would strive to do one or two, which is more realistic given my fitness decline and heat sensitivity. \n\n Then came the cancer diagnosis. They have to poison me bad enough to kill the cancer while trying not to kill me in the process. I believe that they will be able to do this but I do not, in any way, trust that they can do it without stripping me of the last of my physical strength and fitness for doing the things that I most love. Potential long-term effects of my chemo include bone loss and breaks, heart problems, lung problems, neuropathy, cognitive decline, diabetes (I’m already inching my way to that one)… it’s a daunting list, and I’m just the delicate flower to get some, or even all, of them. \n\n By the time I’ve recovered from chemo, I’ll be almost 60, and no, I won’t be able to rebuild my pre-chemo fitness so please don’t try to ‘cheerlead’ me into thinking I will. 60-year-old bodies don't work that way - at least not MY 60-year-old body. In 2023 I was already at my limit for doing the cycle touring (etc) and I’m grieving because I don’t believe that I’ll be able to do it again. Not without scaling back the cancer treatment - trading the risk of earlier death for the opportunity to do one (or two) more big trip. My body can’t go through this for a year and then just spring back. \n\n I’ll talk with my oncology team about this. Since they have found no mets in my bones or guts, maybe it's viable to scale back my treatment so I can still do one or two big spectacular things. I want to explore every option I may have for coming out of this with some of my strength and fitness intact. \n\n I know this is a very privileged post. I know that I should be grateful for what I have had and what I will have. But I’m just so angry and frustrated and sad to have my remaining strong years taken away from me. It overwhelms me sometimes. Now is one of those times. \n\n Hugs and support are very welcome. Toxic positivity is not - please be gentle.
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| 2024-06-20: Cross Cancer Visit, Stage | ||
| Facebook Post\n I have decided to opt out of the remaining chemo. I will still do the Herceptin (for the HER2+ aggressive aspect of my cancer), and the hormone treatment - just forego five more chemo sessions. Now I just have to convince my onco without getting railroaded into continuing with it. According to the Predict tool the chemo only gives me an additional 2% on 15-year survival rate over skipping it and doing just the other treatments.\n \nEDIT: For context, this is not about my day in the ER yesterday. This is about them not finding mets on my bone scan or my CT scan. It's a conversation I was going to have with my oncologist when I saw him on July 4, but since I get to see him today, now, we'll have the conversation today. If they saw any evidence of mets on my scans, I would still be totally in for the chemo. I asked my oncologist, now that the CT scan results came back and showed nothing suspicious, what my Stage is. He said it's Stage 1B, which is much lower than I thought (I had thought, based on the internet, that I was Stage 3). \n Stage 1B is: The tumor is in the lymph nodes and may also be in the breast tissue. It is less than 2 cm in size. Facebook Post\n Note that D (doctor) speaks very very quickly and talks over R consistently. I offer this information to explain Rhonda’s ’slow down’ outburst. Forthwith, \"D\" will be referred to as \"Obnoxious D\".\n\n R: My CT scan results came back with nothing suspicious seen. Can we talk about dramatically reducing, or eliminating, the chemo?\n\n D: You can quit whenever you want\n\n R: This is not my area of expertise- it’s yours. Can we explore it?\n\n D: I don’t recommend quitting. This is the standard treatment that we give.\n\n R: OK but I don’t know if I want to go through this for a 2% improvement in survival. Death from cancer is not the only outcome that I would consider to be a failure of treatment (lists some other possible dire outcomes).\n\n D: (goes on a rant about how you can’t predict what’s going to happen based on statistics).\n\n D: You can do just Herceptin, but then you lose the synergy of Chemo plus Herceptin. When you pair chemo and herceptin, you don’t just get 1+1=2, it’s more like 1+1=3 or 4. (First thing he’s said to actually explain anything)\n\n R: Ok that makes sense. Can we talk about adjusting the dose?\n\n D: You can quit if you want to!\n\n R: I’m not asking to quit. I’m asking to lower the dose. Please slow down, listen, and answer my question. Can we lower the dose?\n\n D: Yes, I was going to recommend lowering it by 10% (Note that his nurse interviewed me when I got there and when he entered the room, he just said, 'oh, you went to the hospital and now you're on antibiotics'. I said 'yes'. Then he just stared at me for several seconds until I started asking my questions, so if he was planning on recommending a drop in dose, I don't know WHEN he was planning on doing that)\n\n R: I see. At what point does lowering it affect the synergy between the chemo and Herceptin?\n\n D: 30%. I wouldn’t reduce by more than 30% because you’d lose the synergy.\n\n R: Great. How do you feel about reducing now by 20%?\n\n D: Fine. I would prefer 15%, but I’m ok with 20%\n\n R: Ok let’s do that please.\n\n D: We can also eliminate one or two of your rounds. I want you to have at least four, which is what they give to non-lymph involved patients. We can decide on the last two later. Questions to Doctor and Nurse:\n Safe to take Tums? We can prescribe something stronger if necessary.\n I have gotten conflicting information about whether it's safe to take Berberine to help control blood sugar and constipation. Doctor says yes.\n Metoclopramide (anti-nausea) isn't working and spikes my blood sugar. What can I use as an alternative? Gravol. \n For constipation, doctor recommends Lax A Day
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| 2024-06-21: Cross Cancer Visit | ||
| Facebook Post\n I’m starting my third day with a resting heart rate well over 100bpm. It woke me up at 1:30 this morning racing so badly. It’s making me dizzy and lightheaded. \n\n Years ago when Brent was going to be convalescing from surgery I bought a little clangy hand bell that he could use to summon me when he needed anything. He never used it. \n\n This morning I have asked him to bring it to me because I’m feeling so weak I had trouble calling for him when I needed help with something. \n\n I thought the side effects were supposed to start easing up a little by now. I sure hope the reduced dose moving forward leaves me better off than this. Facebook Post:\n Another rant about Obnoxious D (my oncologist).\n\n Before I started chemo, I talked about getting funding to get the \"expensive poke\" that would prompt my body to generate lots of nice new white blood cells after the chemo knocks them out. I had my chemo infusion on Friday, and I got the \"expensive poke\" on Saturday.\n\n On Wednesday, I spent 12 hours in the ER, diagnosed with Neutropenia (very low level of the white blood cells called neutrophils), and developing an infection (which is very dangerous when one has Neutropenia). \n\n As a result of the day in the ER, I was set up with two follow-up appointments at the Cross for them to do blood work (check on those neutrophils again), and have a consult. \n\n Well, I had my second follow-up with one of the nurses, and she mentioned that my neutrophils were way better than they had been on Thursday (the day I saw Obnoxious D). Oh really? What are they? Well, neutrophil standard range is 1.8 - 7.5 10*9/L. She said that my neutrophils had jumped up to 6.3 (presumably thanks to the \"expensive poke\") - yay! Buuuuut... what do you mean it's better than the day before? On Thursday, Obnoxious D said that my neutrophils had jumped way up and looked great. What were they then? 0.7.\n\n How am I ever supposed to even trust this guy? Even if I can get past his horrible communication... Consult Results\n - Dental infection - I have an infection behind my lower-left molar that seems to be easing up with the antibiotics. I'm concerned that, even if it goes away this time, the next infusion might trigger a comeback. I'm not sure if I should seek dental help, though, because that also has risks. Answer: They don't want me to seek dental intervention at this time. Use baking soda rinse, and call triage if it gets worse. Note that if I absolutely need dental work during chemotherapy, it's best to get it during days 17-19.\n - New anti-nausea solution: The Metoclopromide does not seem to work for me, and I had a bad side-effect reaction to gravol. I've asked for a new solution. I can't take Ondansetron while I'm on the antibiotics. Answer: They'll get back to me before I meet with Nurse Susan on July 4. Phone triage if I need a solution sooner than that.\n - Hydration - Nurse wants me to use full-strength electrolytes instead of half-strength.
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| 2024-06-22: New Anti-Nausea | ||
| Facebook Post\n It really sucks being a delicate flower with cancer. \n What do I mean by ‘delicate flower’? The women in my family are very sensitive to substances. We will respond more powerfully to a lower dose, and if there’s a side effect to be had, we’re gonna get it. \n So, I started getting chemo nausea on Monday. It was easing up by Wednesday when I got the infection. The trip to the ER was triggered by tachycardia, which I think was a sign of the infection coming on. \n Anyway, these things were here already on Wednesday, but as the chemo side effects are expected to start subsiding by now, I’ve been expecting my nausea and high resting heart rate (no longer technically tachycardia) to start easing up. But they haven’t. No, they have not. The heart rate has kind of plateaued and the nausea is just getting worse. \n So I googled the side effects of both of the oral antibiotics I’ve been given, and guess what… the side effects of BOTH of them include elevated heart rate and nausea. Grrrreeaaaat. \n Since the anti-nausea drugs I’d been given were off the table (one ineffective and one interacts with the antibiotics) I’ve been prescribed a new anti-nausea. I’ll be trying it soon… hoping for some relief. Unfortunately its side effects also include elevated heart rate, jitteriness and sleeplessness. Just what I need.\n They say they can’t do anything for my high heart rate because it’s not dangerous (only torturous… I feel like I’ve been od’d on caffeine for four days straight now). I just have to push through it until I’m done the antibiotics, which isn’t until Wednesday. Facebook Post:\n Gratitude: We went for a little walk today and I got to pet a dog
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| 2024-06-23: Four Hours of Feeling Pre-Chemo Good | ||
| Facebook Post:\n Gratitude: I feel \"pre-chemo good\" this morning. I think when I take my antibiotic at 6:00 (in ten minutes) it will bring the nausea back, so I'm going to enjoy the heck out of this ten minutes...\n Edit: It actually lasted about four hours then the nausea came back with a vengeance. I'm taking the anti-nausea every, approximately, 12 hours, to try and stay ahead of it now. We managed a walk at Mill Creek, and a sit in the garden before things went bad again.
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| 2024-06-26: Port Installation | ||
| Getting the port put in today was a relief. I'm glad I won't have to get an IV every time they want to give me an IV. I think for my regular heart tests they still will, because I don't think they're approved to use the port, but at least my future infusions can be done through the port.\n I was given a local anesthetic, put in the \"cone of shame\" (a drape over my head... not sure if that was so I couldn't look at the doctor, or he didn't have to look at me), and zippidee-doo-dah, I have a port. I also have staples closing one of my incisions, which is quite uncomfortable, but, whatevs.\n The doctor threaded the catheter into one of my veins heading for my heart. It's creepy af, but I still think it'll be better than getting all the IVs. Thankfully my nausea has lightened up considerably. I can eat mostly normally now, and I did. After I got the port in, Brent took me to Burger Baron for a mushroom burger and a milkshake.
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| 2024-06-28: Commence Hair Loss | ||
| The hair loss started today. Stephanie said she thought it would start about two weeks in, and... here it is, bang-on two weeks in. \n I decided that I’m not going to buzz my hair off. I’m going to make the chemo take it. We already know what I look like with no (or little) hair anyway. I might change my mind, but for now that's the plan. \n
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| 2024-06-29: Hair Loss Day 2 | ||
| I'm wearing a colorful scarf to \"contain\" the hair so it doesn't fall out all over the house - I'm putting it aside to give to the birds for their nests. I didn't think anyone was still building their nests - I thought it was too late in the season, but a sparrow came by yesterday and stole an enormous (for him) branch from our yard, so... maybe?\n The first morning, I had a lot of hair fall out, but I still look pretty \"normal\".
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| 2024-06-30: Hair Loss Day 3, Monthly Gratitude and Mom Messages | ||
| Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's June 2024:\n
Monthly Gratitude Posts:\n
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| 2024-07-01: Hair Loss Day 4 | ||
| Today was my biggest hair loss day so far, and now it's unmistakable. Ugh.\n Our friend, Rob, stopped in today to gift me some chemo caps that belonged to Shelley (his wife who passed a year ago from cancer). I even figured out the Rubik's Cube-ish one that came with four pages of instructions.
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| 2024-07-02: Hair Loss Day 5 | ||
Very little hair came out this morning. Maybe this is what I'll have for hair until the \"hair loss\" phase of next chemo.
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| 2024-07-03: EMBRACE Dietary Study Day 1 | ||
| I spent the morning at the U of A getting fitness tested for the EMBRACE study. \n They ran a bunch of different tests on me, including a treadmill stress test. They had me walking 5 km/hour while they raised the incline by 1% every minute. As the incline got higher, they kept asking me if I wanted more. Every time they asked, my brain said no, but my stupid hands kept making a \"bring it on\" motion. Finally, when they got to 11%, and my heart rate was 171bpm, I bailed. \n They said my VO2 was 26. Brent and I had never heard of VO2 before, so I had to look it up. Google says \"VO2 is the volume or amount of oxygen your body consumes. The fitter you are, the more oxygen your body burns and the higher the score. Peak VO2 is the measure of millilitres of oxygen consumed at maximal effort divided by a person's weight in kilos per minute.\" For a 57-year-old, the V02 range is 16.0 (5th percentile) to 35.9 (95th percentile), so I'm kinda average, but I'll take it.\n Tests:\n
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| 2024-07-04: Lab Work, Follow-Up, Port Staples Out, Wig Lady | ||
| I went in for the blood work first thing today. I got a male nurse, and, as usual, I looked away when he put the needle in. I thought, \"oh, that wasn't bad - he's good at that\". Then, a millisecond later I thought, \"oh, no... what is he doing!?\". He was \"chasing\" my vein - he wasn't in the vein, so he was wiggling the needle around. A couple of times I yelped, and then finally he called another nurse to come help. She starts \"chasing\" my vein around and says \"if this is too painful for you, let us know\". I said \"yeah, that was a couple minutes ago\". She said \"you're supposed to let us know!\". I said \"I did!\". She pulled the needle out (from the crook of my elbow), and then they tried the vein in the back of my hand. Thankfully that worked on the first try, but boy... me and my left arm are so over this. After the blood work, I went to get the staples taken out from my port installation. That hardly felt like anything at all, thank goodness. And it feels SO GOOD to have the staples out!! Last appointment at the Cross today was with Nurse Practitioner Susan, who will henceforth be referred to as \"Lovely NP\" (she likes to use the word \"lovely\"). She is so great compared to Obnoxious D. She had a good long chat with me about treatment options, and why we would, or would not, want to end chemo after four (instead of six) treatments. She also talked at length with me about my concerns about the tachycardia. I'd found information on the American College of Cardiology some information that indicated that people getting chemo who experience tachycardia during treatment are 65% likely to die within ten years!! OMG. She had more information, and assured me that, unless my heart rate goes above 140bpm, and/or I have chest pain or shortness of breath, I'm probably not sustaining heart damage.\n Official results of consult with Lovely NP:\n
After the Cross, Brent took me out for sushi (Lovely NP said it was allowed). YAY!\n Then we came home, and picked up Shannon, and the three of us went off to see the wig lady, who was great. She was patient, helpful, knowledgeable, and helped me choose a great wig.
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| 2024-07-05: Chemo + Herceptin Infusion 2 | ||
| Facebook Post:\n Heading in for second dose today. Dreading it, but glad that my dose has been reduced by 20%
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| 2024-07-11: Jane C Cancer Journey | ||
| One of my heroes, Jane C, wrote this blog called Cancer is Not a Journey. It is perfect. Quote:\n Cancer is not a journey. Stop with the meaningless platitudes.\n\n Cancer is a kidnapping. A hijacking. You’re going along, living your life and BAM. A bag gets thrown over your head and you are captured and you don’t know where the hell you are going. Thoughts shared with Jane, July 11:\n I rankle at people calling cancer a \"journey\" as well, but I don't\nthink it bothers me as much as it bothers some folks. Other things\nbother me more (for example, \"you've got this\" makes me want to\nscream). The only reason why I've called it a \"journey\" on my blog is\nbecause the blog is on the website that I normally use to plan and\ndocument my travels... you know... like actual journeys. :)\n\n I'm terrified that I will end up with heart issues. Lung issues.\nCognitive issues. Diabetes (which I've been so successfully fighting\noff for the last two years). These are all things that can happen\nfrom my chemo, and from the Herceptin. Something like 25% of women\nwho get Herceptin end up with heart issues. I feel very much like the\nlast few strong, healthy years of my life have been stolen from me. I\ncould already feel my strength and vitality draining off, and was\nmaking plans for \"one last\" European cycle tour when this happened,\nand I just don't know if I'm going to have even one more left in me\nnow. I'm so angry. I also have hand tremors and muscle twitches. It\ncould just be essential tremor, and chemo side effects, or it could be\nParkinsons, MS or ALS.\n\n I don't think I'm as much of a fighter as you are. I know that if I\nhave some kind of cognitive or degenerative disease I'll immediately\nstart looking into doctor-assisted suicide. Brent and I are from very\ndifferent camps that way. I demand quality from my life, where he\nvalues quantity as much, or more than, quality. I have a few things\nthat I'd want to make sure I have settled, but I would be ready to go\nif my only option was severe decline.\n\n You say you're stunned by my openness. I guess there are a couple of\nthings behind that. First of all, I am not afraid of losing anything.\nIf I lose friends (or acquaintances) because of it, then they're not\nones I want anyway. Also, I think my experience can help others\nlearn. We don't help each other learn and grow if everyone is keeping\ntheir hard experiences tight to the chest. Several people have\nmentioned to me that I've helped them learn, not only how to deal with\nme, but how to deal with their other people who are going through\nsomething hard. I like to feel useful, and helping people learn makes\nme feel useful.\n\n Thoughts shared with Jane, July 12:\n I don't think it's weird at all to get hypnotized for chemo. It's a\ntruma - physically and mentally. Whatever we can do for ourselves to\ncope is a good thing. I personally use humor (you're probably\nbeginning to suspect). I've ordered a couple of really colorful wigs,\nwhich should be here before my next infusion. One of them is long and\npurple, and I'll be wearing it enroute, but once I get there, the IV\nstand will be wearing it and her name will be Lucy (short for\nLucifer).\n\n Yes, I think it's important to have someone to say the hard shit to\nthat isn't necessarily a loved one. So far my hard-shit-person has\nbeen an internet rando from California. She also has HER2+ breast\ncancer. She got it at the same time as her wife got a different\ncancer a few years ago. Her wife has since passed of it. Internet\nRando Barbara and I have a lot in common and I vent to her fairly\nfrequently. I hope you don't mind if I also start venting to you -\nyou're one of the few people who I think really gets it.\n\n \nI like the scar tattoos on other people, but yeah, it's not for me\neither. Although I have no qualms about sticking random things on my\nchest. I actually love (like LOVE) being a flattie. I expected to\nfind a lot of relief in it but it's more than that. I LOVE it.\n\n That sucks so bad about your heart problems, and your resignation that\nyou probably won't do any more mountain hiking. I haven't done much\nhiking in the last few years just because my favorite stomping grounds\nhave become so overcrowded and hassle-full, but I don't want to just\nlose the option of going if I decide to. I'm spoiled - I get that.\nVery privileged with the life I've had, and what I will still have to\nsome degree, after this. Knowing how privileged I am doesn't stop me\nbeing angry.\n\n Honestly I would like to know what caused this to happen to me. I'm\nsure there were dozens of \"risk factors\", starting with never having\nbeen pregnant, alcohol consumption, and living in a\npolluting province in a polluted time. But the problem is, when it\ncomes to the individual, there's no way to know, and ascribing blame,\nespecially to SOMEONE ELSE'S cancer is just counter-productive (and a\nreal asshole move if you're blaming the person for getting cancer).\n\n Unless we had a \"control Rhonda\" who split off the day I started\ngetting chemo, there's no real way to find out how much of what I'm\nexperiencing is due to the chemo. But my hand tremors started during\nthe pandemic and got noticeably worse over the last several months\nleading up to chemo. They have taken another giant leap forward in\nseverity, and now I have the big muscle twitches. Maybe they'll clear\nup when I'm done chemo, and maybe they won't - all I can do is wait\nand see. I'm terrified\nthat I may end up with dementia. I'm doing what I can to prepare -\nmaking sure Brent knows where all the bodies are buried, for example.\n\n I thought I might get involved in some in-person support groups, but\nI've thought better of it. I have online support groups, including my\namazing FB people. I get very triggered by people \"coming at me\" with\ntheir religious (and woo) b.s., and if I go to an in-person support\ngroup I think I wouldn't be able to avoid that like I can online. I\nhad EMDR several years ago and it worked great. Then my therapist\nstopped doing it and I just haven't found anything I like as well. If\nI really need something, though, I will 100% seek out EMDR again.\n\n Facebook Post: I find my boobless chest wonderful and fascinating. I love how i look in a t-shirt and I love how it all feels. I do not miss my boobs AT ALL. I didn’t expect to really miss them but to be this satisfied and gleeful with this version of me is more than I hoped for. It’s almost like a couple of unwelcome aliens are finally gone off of me. | ||
| 2024-07-19: Hair Loss Show Conclusion | ||
| No scalp pain and minimal hair loss this chemo round, so I've declared the Hair Loss Show to be concluded. I'm tired of looking at my \"baby bird hair\" (thanks to my sister, Jo, for that brilliant description) and buzzed 'er off this morning. When I buzz my own hair I normally use a #2 attachment, but that was still a little too baby-bird-esque for me, so I went with a #1 this time, which leaves me close to completely bald. I bought a couple of fun wigs for myself, and one for Brent. He really rocks the barrister look!
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| 2024-07-23: EMBRACE Dietary Study Meat Locker | ||
| Went into the ‘meat locker’ today. This is Part 2 of the Dietary Study (EMBRACE) that I'm participating in, and is a 28-hour stint in an air-tight room, which they call their hotel room (but Brent and I dubbed the 'meat locker'). The room is air tight with a big unit in the ceiling that records my oxygen and carbon dioxide for the 28-hours that I’m in here. For more information about the EMBRACE study, you can see my entry for Part 1.\n Thoughts shared from the Meat Locker:\n
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| 2024-07-24: EMBRACE Dietary Study Meat Locker | ||
After I completed the schedule inside the Meat Locker, Brent joined us and we had a meeting about next steps, which include:\n
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| 2024-07-25: Lab Work, Follow-Up (Lovely NP2) | ||
| I’m crying with relief. I was told that since Lovely NP is away right now I would have to see Obnoxious D today. When I got there, though, I didn’t have him. I had a substitute nurse practitioner (Lovely NP2) and she was so amazing. And she’s given me a Rx for something that will help prevent heart damage, which has been one of my biggest concerns.\n Lovely NP2 is one of the authors of an article in Journal of Clinical Oncology titled \"Multidisciplinary Approach to Novel Therapies in Cardio-Oncology Research (MANTICORE 101-Breast): A Randomized Trial for the Prevention of Trastuzumab-Associated Cardiotoxicity\". A very high percentage of people who get Herceptin for the HER2+ breast cancer develop heart damage. Lovely NP2 explained that Herceptin works against HER2+ cancer by binding to the HER2 receptors on breast cancer cells, but it ALSO binds to the HER2 receptors on the heart (which are good cells). I feel very fortunate to have seen someone so knowledgeable about prevention of this heart damage!
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| 2024-07-26: Chemo + Herceptin Infusion 3 | ||
| FB Post:\n Today is Chemo+Herceptin Round #3 of 6. \nWhen I'm finished Chemo+Herceptin, I will get Radiation, 11 more infusions of Herceptin only (this is the one that can cause heart damage), and 5 years of mind-messing drugs. So, please don't celebrate that I'm \"almost done\" - I'm nowhere near done. But I'll be halfway done the Chemo soon, which I'm happy about.
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| 2024-07-27: Back to Sturgeon ER, this time with chest pain | ||
| FB Post: Back to the ER at the Sturgeon with chest pain. Woo-freakin’-hoo.\n The paramedics who came think it is nothing (just the position I was laying, not a cardiac event). But protocol demands that I get looked at so that’s what’s happening. 14 hours and I’m released but I still don’t have results for the blood clot test on my leg. They discharged me so I can make it to Shoppers on time to get my white blood cell booster (the expensive poke) before they close until Monday morning. If I have a blood clot I’ll be called back in to the Sturgeon for treatment. 16-Hour Saga:\n Went to bed at 11:15, laying on left side\n Approx 11:30, pain across upper back\n Approx 11:40, pain extends across chest\n Approx 12:00, got up, pain starts to dissipate \n Phoned 811, they questioned me and recommended phoning 911\n Phoned 911\n Paramedics attended approx 12:15\n\n Heart trace performed, looked ok\n Recommended trying to lay in bed\n Returned to bed, laying on left side\n After approx 5 min pain started in upper back on left side only and quickly spread to chest on left side only\n\n Paramedics said they believe pain is positional and not cardiac, but they can’t rule it out without blood work \n Recommended follow up:\n - they can take me to hospital\n - We can drive me to hospital\n - I can follow up with my GP\n\n We decided to drive me to Sturgeon in our own vehicle \n\n Arrived at the Sturgeon approx 1:00\n Triaged and registered\n Approx 1:30 blood draw for heart enzyme test and EKG\n Approx 3:45 saw nurse. Gave history and had blood pressure check\n 5:50 Doctor arrived. Took some history, did an ultrasound, advised a chest XRay and CT Scan\n 6:00 nurse visit to do EKG\n 6:10 nurse visit to do blood draw for heart enzyme test \n 6:25 nurse visit for blood pressure \n 6:35 chest XRay\n 7:00 blood draw results on AHS website indicate heart enzyme (Troponin) in normal range but D-Dîmer is high (1.44 with normal being < .5). D-Dimer indicates blood clotting. \n 7:40 IV installation \n 7:50 CT Scan\n 8:40 Magnesium IV - one hour. Wow. Dr noticed left calf swollen so ordered an ultrasound\n 9:45 Waiting for ultrasound on leg\n 2:15 Ultrasound on leg\n 3:00 Discharged without ultrasound results. \n\n 3:30 raced to Shoppers for my expensive poke (white blood cell booster)\n\n 5:00 results of ultrasound show no sign of blood clot
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| 2024-07-29: First Pee Sickles Collected | ||
| As part of the EMBRACE Dietary Study, I have had a few things to do post-Meat-Locker. I have to take one or two urine samples and put them in the freezer - there will be a total of 19 samples altogether. I also have to wear an activity monitor for a couple of weeks, and record my diet for three non-consecutive days within the two weeks.\n This morning, Krista showed up to collect my \"pee-sickles\". When we had discussed the terms of my participation, they expected me to be able to accommodate a cooler bag in the freezer large enough to hold all nineteen samples, but that wasn't possible, so they gave me a cooler bag big enough for six, and now we have to transfer the \"pee-sickles\" three times for them to get all of their samples.
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| 2024-07-31: Monthly Gratitude and Mom Messages | ||
| Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's July 2024:\n
Monthly Gratitude Posts:\n
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| 2024-08-02: Pee-Sickle Collection #2 | ||
Today was the second delivery of my pee-sickles. The EMBRACE study wanted me to store all 19 samples in the freezer, but our freezer is small and full, so they accommodated me by providing a small, 6-sample cooler bag. Today a person from the study stopped by to pick up the most recent 6 pee sickles.
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| 2024-08-05: Feeling Half-Way-Ish | ||
| FB Post:\n It's been 52 days since my first infusion. I'm definitely through the worst of the third chemo infusion now. I have three more with chemo (then 11 more with just the targeted drug, but we won't talk about that right now), and expect to start feeling \"human\" again after my last chemo on, or around, October 9, which is 65 days from now.\n So, I'm not quite halfway through the chemo, but I'm feeling very halfway-ish. YAY!
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| 2024-08-06: Leg Ultrasound #2 | ||
| I went into Insight today for an ultrasound on my left leg. Just a repeat of what they did at the Sturgeon ER last week. My D-Dimer was high, and my left calf a little swollen, so the ER doc was concerned about blood clots. No blood clots found again this time. Whew! | ||
| 2024-08-08: Cardio Connect - Pick Up Heart Monitor | ||
| When I was told that I would get a heart monitor for 24 hours, I expected something like a single band around my chest or something. I did NOT expect 50 lbs of gear (only a slight exaggeration), including five electrodes, a blood pressure monitor that activates every 20 minutes (thankfully only once/hour from 8PM to 8AM) plus the two big recording units. My goodness. I'm glad I only have to wear this stuff for 24 hours!\n After I got outfitted with all the gear, I couldn't get my own t-shirt back on over it all. Thankfully Brent had a jacket along that he didn't need, so I put that on over top of all the gear. Then, I went across the hall to get a bunch of breath tests done - completely unexpected, but I'm looking forward to seeing the results.
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| 2024-08-09: EMBRACE Scan and final Delivery, Seroma Drain, Cardio Connect - Drop Off Heart Monitor | ||
| At my last seroma drain, they gave me a compression top to wear that would hopefully prevent the seroma from returning. Sadly, it did not work... all it did was push the seroma up, so it is here, but higher than before. Today I visit the surgeon's office to get drained for, hopefully, the last time. | ||
| 2024-08-11: Camping at Devon | ||
I wanted to go Jumbo camping - I'm feeling well, and confident, enough for that for the first time since I started chemo. But not so confident that I wanted to venture too far from Edmonton, so we decided to try the Lion's Campground at Devon for the first time. It's a nice enough campground, but it's very tightly packed, so it felt a little sardine-y to us.
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| 2024-08-12: Camping at Devon | ||
Brent wanted to go for a long walk today. We started off early in the morning to beat the heat, with 2.5km along the river. When we got to the turnaround point, we could go cross-country, which was hillier, or retrace our steps. I opted to retrace as I was starting to feel fatigued already. It was a good call, but we decided to walk again tomorrow, starting with the hilly portion first.
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| 2024-08-13: Camping at Devon | ||
We woke up to a thunderstorm this morning, and we thought that our walk plans were foiled, but the rain stopped, and the not-so-Accu-Weather said that it would not return. We decided to trust it and go for our walk, starting with the Hoodoo Hill trail, which was really cool. As promised, it was hilly for the first section, and we met a man with his two dogs who warned us about a downed wasp nest along the trail with some angry wasps around it. We watched out for that and avoided it, and then returned via the riverside path back to the campground.
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| 2024-08-15: Lab Work, Follow-Up (Lovely NP) | ||
| Today Lovely NP said that my hemoglobin is low enough that it's close to the point where I will need a transfusion, and to postpone an infusion. She's not postponing my own for tomorrow. She's giving me an Rx for an iron supplement, and some dietary recommendations to try and bring the hemoglobin up before next infusion. \n I hope those things work. I really don't want to have to postpone an infusion and drag this out longer than it needs to be. | ||
| 2024-08-16: Chemo + Herceptin Infusion 4 | ||
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| 2024-08-17: EMBRACE Study Results | ||
| Height: 160cm (5.25ft)\n Weight: 63kg (139lb)\n BMI: 24.6
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| 2024-08-20: Camping at Wabamun | ||
| I have been feeling so good this round. Waiting for side effects to kick in, but they're not really happening. So, this morning when I got up, I convinced Brent to go out Jumbo Camping at Wabamun. It's really close to the city (about a 45-minute drive) and I picked a site closest to the long-drop. What could possibly go wrong, right?\n Check-in time at Wabamun isn't until 4PM, so we got a late start, but had a lovely evening and a lovely fire, and some lovely rain overnight.
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| 2024-08-21: Camping at Wabamun | ||
| I had a couple of bouts of diarrhea in the wee hours. Dammit. I wish one of us had packed the immodium. I just really didn't expect to need it, what with the new iron supplement that is so badly constipating...\n Anyway, after only two bouts, things cleared up, and we had a nice, relaxing day. As the day wore on, however, I started to feel more and more fatigued and nauseated. I lay down quite a bit in the afternoon and evening.\n
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| 2024-08-22: Abort Camping at Wabamun | ||
| At 11:30PM (last night) the diarrhea started. The previous morning it started in the wee hours, and was two bouts an hour apart. This time it started in the night and seems to be on an every two-hour schedule. Dammit, I really wish one of us had remembered to pack the immodium. Getting up in the middle of the night to walk to a long-drop multiple times is really not fun. So, bout #1 at 11:30PM, then bout #2 at 1:30AM. I told Brent that if that was the end of it, I was fine to stay, but if there was a third one, I'd have to go home.\n At 2AM he decided he was going to go for a pee, and I could feel my guts gearing up for round 3, so I told him I thought we needed to break camp and go, which we did. \n We arrived home just before 3:30, and right on schedule, at 3:30, I had bout $3 (and took some immodium).\n I guess I need to be patient through \"worst week\" even if I feel great. | ||
| 2024-08-26: Echocardiogram | ||
| Today was my second echocardiogram (the first one since I started chemo). I had the same technician as the first time - she's very sweet and engaging, but she's not the best IV-installer. It took her two stabs (literally) this time. Study Result\n -The LV size is normal. The LVEF based on Biplane Simpson's method is 60%. The GLS is -21%, which is normal, same as the prior TTE in May 2024. There is normal diastolic function.\n -The RV size and function are normal. \n -Normal bi-atrial size. \n -No hemodynamically significant valve disease.\n -No pericardial effusion
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| 2024-08-28: Aborted Seroma Drain | ||
| I saw my surgeon today to have my seroma drained, but that didn't happen. After waiting for her to finish a surgery for about 90 minutes, we talked and she decided that, because my seroma keeps recurring, I should have a drain put back in. I asked if we could wait until after my camping trip next week, so it's set up for next Thursday. | ||
| 2024-08-30: Cardio Connect - Cardio Stress Test | ||
| I got turned away from my heart stress test today. My hemoglobin from my last blood work was low enough that they said the test would not be accurate. But they looked at the results from my echocardiogram on Monday and said everything looks good so I’ll take that answer. | ||
| 2024-08-31: Monthly Gratitude and Mom Messages | ||
| Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's August 2024:\n
Monthly Gratitude Posts:\n
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| 2024-09-02: Jumbo Camping at Wabamun | ||
We're taking a do-over on the camping at Wabamun. After we bailed at 2AM last time, we decided to wait until my \"strong\" days to try again. We got site 284, which we've decided is our favorite powered site out there (as long as 283, the pull-through site opposite our driveway is empty).
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| 2024-09-03: Jumbo Camping at Wabamun | ||
We had a great day at Wabamun, including many visits from chickadees, blue jays and squirrels. We walked to town, which was about an hour of walking. It was quite a bit for me, but we took a rest at the shoreline and I was fine.
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| 2024-09-04: Jumbo Camping at Wabamun | ||
| We had a lovely relaxing morning at the campground, including walking the Willow loop. The chickadees came back to see us, and Brent made us a fire that we enjoyed for a couple of hours before packing up. | ||
| 2024-09-05: Virus Study, Lab, Consult and new Drain | ||
| Lovely NP did not want me getting chemo the day after the new drain was put in because of risk of infection, so she's postponed my chemo from tomorrow until Monday. She advised that for round 6 I would revert back to the normal schedule and have the chemo on the Friday. | ||
| 2024-09-06: Chemo + Herceptin Infusion 5 POSTPONED | ||
| No chemo today - we're giving my drain incision a few \"bonus days\" to heal before my immune system gets knocked out. | ||
| 2024-09-09: Chemo + Herceptin Infusion 5 | ||
| 2024-09-19: Drain Removal | ||
| I saw Dr. Wasey today. She asked me about the drain and I told her it started off at around 10-12ml/per day, then declined to about 4-5ml/day for the past couple of days. She felt that was low enough to take the drain out so she did. I sure hope this is the end of the seroma now! \n Brent is in Vancouver right now and I'm not strong enough to drive myself. This round of chemo has been brutal. So, Nancy Nancy drove me to my appointment and then we went for breakfast at Cora's after. | ||
| 2024-09-23: Radiology Consult | ||
| I met with the radiation guy this morning. He wants to start radiation three weeks after chemo is finished. I asked him if we could start in November to give me late October for selling the apartment in Calgary, which he agreed to.\n He said that I would need 15 radiation treatments - every business day for three weeks. Likely side effects include some skin redness and burn, and potentially a cough. The skin should clear up three weeks after radiation finishes and the cough five weeks after. \n He set up an appointment for me for this Wednesday to get the planning CT scan done, and get my small \"freckle\" tattoo so they can make sure I'm lined up the same for each treatment. | ||
| 2024-09-25: Radiation Planning CT and Freckle | ||
| I visited the radiology department this morning for the first time. They did a CT scan on me and gave me three tattoo \"freckles\" that they'll use to make sure I'm lined up exactly the same each time I get radiation in November. | ||
| 2024-09-26: Lab, Consult | ||
| Welp my hemoglobin was down to 76, and with how bad my side effects were last time they decided to postpone my final chemo by a week. I was dreading it but also looking forward to having it over and done with. I’m disappointed. It also puts a crink into plans for cleaning out my apartment in Calgary. I’m not sure yet how big of a crink. | ||
| 2024-09-27: Chemo + Herceptin Infusion 6 POSTPONED | ||
| 2024-09-30: Monthly Gratitude and Mom Messages | ||
| Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's September 2024:\n
Monthly Gratitude Posts:\n
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| 2024-10-03: Lab and Consult | ||
| Hemoglobin was up to 83 (it was 75, I think, a week ago). She wanted to postpone another week, which I pushed back on because of the plans to go to Calgary to clean out the apartment and prep it for sale.\n I asked about a transfusion and she said that normally they give transfusions when hemoglobin is down to 70, but because my side effects have been so bad she would request one.\n I asked about reducing the dose or skipping the chemo all together. She said that I've had enough chemo to get the Herceptin (synergistic) started properly and reducing to a 60% dose or skipping the chemo entirely were both viable options. Brent and I had a quick discussion and I chose to have the 60% dose. I hope I don't regret that. | ||
| 2024-10-04: Chemo + Herceptin Infusion 6 | ||
| Today I had my final infusion that included chemo (at 60% dose). I'm glad to have the last one but I'm dreading the onset of side effects. I'm hoping that the lower dose (and tomorrow's blood transfusion) will help make the side effects less, and much more manageable.\n Since the side effects hadn't hit yet when I was done getting the infusion, Brent and I went for Pho and Vietnamese Iced Coffee after. Yum!
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| 2024-10-05: Blood Transfusion | ||
| Normally they don't do transfusions unless your hemoglobin is below 70. I'm around 83 or so, but because my side effects have been so bad, Lovely NP requested a transfusion for me. It's a little freaky getting a \"blood product\". | ||
| 2024-10-24: Lab and Consult | ||
| Hemoglobin today was 89, which is higher than before but still much lower than the normal range of 120-160. Lovely NP says it can take months of iron supplementation to bring it back up after chemo ends. Continue taking the iron supplements until I've reached 90-days.\n If I experience any delayed neuropathy I should contact Lovely NP\n Around the end of Herceptin, Lovely NP wants to put me on a bone-strengthening drug, which, unfortunately weakens jaw muscles. She will give me a form to take to my periodontist appointment in January to get \"approved\" for taking this drug.\n Q: Plan for port removal: Have it removed ASAP after last infusion\n Q: Plan for future monitoring/scans: They don't do regular scans after treatment. GP will be responsible for requesting scans if any problems/symptoms arise.\n S: Told Lovely NP that I plan to continue taking Berberine\n Q: When to stop taking Bisoprolol: Continue to take it for three months after last Herceptin infusion.\n Q: How can I be Stage 1B when I have a lymph node involved? All parameters of original tumor and lymph node tumor entered into a program which calculates the stage. | ||
| 2024-10-25: Herceptin-Only Infusion 1 | ||
| I always felt a strange sense of foreboding after getting my infusions, and today was no different, although I know I'm not supposed to get sick from the Herceptin-only infusions. I still just felt \"off\" afterwards... purely psychological. It was sure nice, though, to only be at the Cross for an hour instead of several hours. | ||
| 2024-10-28: Breast Radiation Class | ||
| Class about exercise and stretching for radiation. Some information about fatigue, cording, lymphedema. \n Need to do the stretches during radiation and for six months after (end of May). Pause stretching if blistering or skin breakdown. | ||
| 2024-10-31: Monthly Gratitude and Mom Messages | ||
| Monthly Mom Messages\n My mom and I touch base by e-mail every morning. I decided to \"mine\" these e-mails for notes that can provide a record of happenings, and state of mind. Here's October 2024:\n
Monthly Gratitude Posts:\n
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| 2024-11-04: Radiation | ||
| One down, fourteen to go | ||
| 2024-11-05: Radiation | ||
| Two down, thirteen to go. Still feeling pretty normal. | ||
| 2024-11-06: Radiation | ||
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| 2024-11-07: Radiation | ||
| Zappy Birthday to me (fourth zap this morning... eleven to go) | ||
| 2024-11-08: Radiation | ||
| Fifth zap done. Ten to go. Still feeling fine but looking forward to a zap-free long weekend. | ||
| 2024-11-12: Radiation | ||
| Zap #6 and all’s well | ||
| 2024-11-13: Radiation | ||
| Seventh zap. It was a snap. | ||
| 2024-11-14: Radiation | ||
| Today is my hump-zap (exactly like a hump-day, only way different).\n Eight of fifteen zaps done! | ||
| 2024-11-15: Radiation, Herceptin-Only Infusion 2 | ||
| Double-header today. Zap then infusion. Blech. | ||
| 2024-11-18: Radiation | ||
| Zappa-Dee-Doo-Dah - it’s my last full week of radiation (final one is next Monday) | ||
| 2024-11-19: Radiation | ||
| Eleven of fifteen zaps done and still no side effects although my Zaparistas assure me that they can still happen since the radiation is cumulative. | ||
| 2024-11-20: Radiation and Follow-Up | ||
I had a follow up with the radiation oncologist today. She said everything looks good but that the rash I have in the area formerly known as my cleavage is irritation from the radiation; not boob rot as I had thought. I should have known it wasn’t boob rot though because it’s not itchy at all. She said that the skin side effects normally peak about two weeks after radiation is finished and then takes about two weeks to clear up so if I do get bad skin effects it should be cleared up by Christmas.
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| 2024-11-21: Radiation | ||
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| 2024-11-22: Radiation | ||
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| 2024-11-25: Radiation | ||
| I'm all zapped out! Final radiation treatment was today.\n Surgery: CHECK\n Chemo: CHECK\n Radiation: CHECK\n Next up: Herceptin infusions every three weeks until the end of May. This breast cancer thing sure is keeping me busy... | ||
| 2024-11-27: Echocardiogram | ||
Echocardiogram Results:\n
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| 2024-12-04: Radiation Burns and Hair | ||
| By the end of my radiation treatments my chest skin was getting some redness, irritation and mild sores. Apparently that continues to progress for about two weeks after. Yesterday I filled the Rx for cream if my skin starts to peel, which it did. It's been quite itchy, sore and irritated. It's the worst at the top of the area formerly known as my cleavage, and my armpit. I think it's because the skin in those places is 'normal'. Most of the radiation area is still numb from my surgery.\n The hair on my head has started coming back in. Some of the hair in other places is as well, although my sparse eyebrows are still sparse and I think my nose hair hasn't yet started coming back in.
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| 2024-12-05: Oncology Follow-Up | ||
We met with Lovely NP today for my oncology follow-up. Highlights:\n
I am seriously considering not taking this drug - those side effects look really detrimental to my remaining \"middle age\" quality of life. We looked at the Predict website and it makes a difference of 1% in ten-year survival. I've spoken at length about it with Brent, I have a convo booked with Elissa for this Saturday, and I'll be visiting Cheryl next week so I can talk with her about it too. It's a tough decision.
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| 2024-12-06: Herceptin-Only Infusion 3 | ||
| Herceptin without chemo is such a nothing-burger. A wonderful, wonderful nothing-burger. | ||
| 2024-12-18: Update on Letrozole | ||
| Just a quick(-ish) cancer update. I'm finished with chemo and radiation and I have Herceptin infusions until the end of May.\n\n They have talked about putting me on a hormone blocking drug (Letrozole), which I thought would happen after the Herceptin was finished, so I thought I still had months to think about it. Nope. Last time I saw my oncologist she said that I \"could\" start on it right away and I would be on it for five years.\n\n I have had a lot of concerns about this drug. It has some terrible side-effects and lots of women stop taking it because it's so awful. Things like cognitive impact, bad mood swings, really bad achiness. People say the drug ages you ten years overnight. \n\n Anyway, if that was all there was to it I could take it and just stop if the side effects were too bad, but there's more to the story:\n 1) Taking this drug only boosts my ten-year survival odds by 1% (boosts from 94% to 95%).\n 2) Another possible side effect is bone loss and osteoporosis. To counteract that, they would want to put me on a bone strengthening drug. Ironically, this bone strengthening drug causes osteonecrosis of the jaw in 9% of people. That basically means that your jaw dies and rots and you lose half of your face. \n\n The bone loss, osteoporosis and osteonecrosis are side effects that you don't know you have until it's \"too late\", so I can't just try it and stop if I get them.\n\n My appointment with the oncologist was on December 5th. I got the Rx filled for the Letrozole but I haven't started taking it. I've been thinking about it a lot, and I've decided that I'm not going to take it. Of course I may change my mind next time I see the oncologist (late February), but for now that's my decision.\n\n I've read that they're testing the combination of Berberine and Curcumin for stifling hormone-positive breast cancer, and they're finding it to be as effective as these really toxic drugs. My oncologist is not on board with me taking those things instead because they're not \"proven\" (yet), but I think that's what I'm going to do.\n\n At the end of the day, I'm 58 years old, and if I take Letrozole for five years, I'll be finished when I'm 63. To that I say no thanks - I want to enjoy my quality of life for the next five years, not decimate my health and lose more of my remaining \"robust and fit\" time in an attempt to improve my ten-year cancer survival by 1%. There's more to life than not dying of cancer.
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| 2024-12-24: Eyebrows for Christmas | ||
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| 2024-12-27: Herceptin-Only Infusion 4 | ||
| 2025-01-14: GP Call re: Lung Function | ||
| After chemo infusion #3 on July 26, I ended up going in to the Sturgeon ER on the 27th with chest pain. I didn't think it was a heart problem - I thought it was muscular, but the chemo directions are very clear that you have to get looked at anytime you have chest pain. So, after a visit from paramedics, Brent took me in to the Sturgeon ER, where they checked me over very very thoroughly. The doctor there referred me to Cardio Connect in St. Albert for additional tests, which I had on August 8. For good measure, Cardio Connect also pub me through some breathing tests.\n\n Anyway, my heart is fine, but in December I got a call from Premier Respiratory Centre to come in and see them in January. I'm frustrated by all this \"extra\" healthcare that I don't believe I need when other Albertans are begging for healthcare that they can't get. So, off I went to Premier on January 7th. The doctor spent all of ten minutes with me and then foisted three months worth of Alvesco, a steroid inhaler, onto me and said his office would call me for re-testing after three months.\n\n I do NOT want to use a steroid inhaler unless absolutely necessary. I've used one before and gotten such bad thrush that I couldn't speak because my vocal chords were so gummed up with goo. At this time, I don't have any shortness of breath or other problems. I seem to be back to pretty close to normal with regards to walking/hiking (and, I assume, cycling). \n\n I took the inhalers home but I wasn't sure if I would start using them or not. Fortunately, I had a phone appointment with my GP that very afternoon and I asked for her advice about whether I needed to use them. She said she would go back and review my situation from August and call me in a week.\n\n She called this afternoon and she said that testing that was done in the summer couldn't be used to determine if I need inhalers or not because I was anemic at the time, which would impact my lung function. She said that she would get me re-tested as soon as my hemoglobin is above 120 and is sending me a requisition to get bloodwork done in early March to check my hemoglobin, which was up to 107 at my last bloodwork, so... close, but not quite there yet. \n\n The moral of this story is that you need to think about stuff and advocate for yourself rather than just blindly doing everything that a doctor tells you to do. I will get my lung function re-tested WITHOUT steroid inhalers first to validate whether I need the inhalers or not. If it's determined that I do need them (e.g., if they will stand between me and COPD), I will use them and hope I don't have a repeat of the thrush problem. But, if I had just blindly followed the pulmonary doctor's path, I would be using inhalers right now, and he would attribute any improvement at re-test to the inhalers, when it may very well be just a result of my recovery from the anemia. Ugh. | ||
| 2025-01-17: Herceptin-Only Infusion 5 | ||
| 2025-02-07: Herceptin-Only Infusion 6 | ||
| 2025-02-27: Oncology Follow-Up | ||
| Nothing much to report these days. I told Lovely NP that I'm not taking the Letrozole and she hardly blinked about it. I wasn't sure what to expect, but I was a little worried that she'd try to convince me that I should take it. She didn't. | ||
| 2025-03-01: Herceptin-Only Infusion 7 | ||
| 2025-03-05: Surgeon Consult | ||
| I met with my surgeon again today because, although it is small, I still have this persistent seroma. The only reason it's as small as it is is because I'm wearing compression pretty much 24/7, and I don't want to have to do that forever!\n I asked her about \"Sclerotherapy\" (a chemical agent is injected into the seroma to irritate the lining and promote healing). She said she doesn't like to use that because (1) it can cause a bad reaction, and (2) it may not even work. She suggested, instead, that she open up the seroma and \"scrape\" the inside, and then I wear compression for a while again after, which should help my skin \"adhere\" to my torso. That sounded good to me so we're going to do that. Unfortunately my surgeon is super busy these days with breast cancer surgeries so I'm going to have to wait to hear when she can do it. | ||
| 2025-03-12: Echocardiogram | ||
| Echocardiogram Results:\n LV size and systolic function normal. LVEF 62% on contrast images. GLS -22% (normal).\n RV size and systolic function normal.\n Valvular function not assessed on this limited study.\n No pericardial effusion. | ||
| 2025-03-13: Diagnosis - One-Year-Anniversary | ||
| We had a freak snowstorm today so my \"I'm Still Here B#tches\" gathering got postponed to April 1st. I'm disappointed that we didn't go out today, but what better day to \"celebrate\" your one-year cancer anniversary than April 1st? | ||
| 2025-03-20: Oncology Follow-Up | ||
| I'm feeling really home-stretch-ey. Lovely NP is going to book my port removal (I am so happy I have the port, but I'll be so glad to have it gone, too), and my final consult with her! YAY! | ||
| 2025-03-21: Herceptin-Only Infusion 8 | ||
| 2025-04-01: Rescheduled \"Anniversary\" | ||
| 2025-04-11: Herceptin-Only Infusion 9 | ||
| Herceptin this afternoon, and fly to Australia tonight. Yay! I'm glad that Lovely NP gave me an \"extra week\" in between this infusion and the next one so that Brent and I can spend 3.5 weeks in Australia. 2.5 weeks just would not have been enough. | ||
| 2025-04-17: Mastectomy - One-Year Anniversary | ||
| 2025-05-09: Herceptin-Only Infusion 10 | ||
| Second-last infusion today. Yay!! I can’t wait to be done with the infusions and get the port taken out. The countdown is on. | ||
| 2025-05-12: Seroma Pre-Admission | ||
| Nothing special about this. Just a pre-admission phone call to talk about (1) what meds do I take, and (2) what do I need to do before, and on, the date of my seroma surgery. | ||
| 2025-05-21: Seroma Debridment | ||
| Brent and I were surprised when this surgery was booked that it would require general anesthesia. We thought it would be simpler than that.\n My surgery was booked for 2:45 but I had to be there by 12:45. I had to fast (including no water) after midnight, so I was pretty hungry and thirsty when I got there. They gave me a saline drip to help with that - yay! \n For my poke they were able to access my port instead of giving me an IV. BEST SURGERY DEPARTMENT EVER. \n I was also surprised (and yeah, I know, I shouldn't have been) that I ended up with a drain afterwards. I'm having to rearrange some Red Deer plans as a result of that, but if we're looking for a silver lining, I guess having the drain will be a good reminder that I need to be on \"light duty\" for a while after the surgery.\n Wish me luck in finally getting rid of this seroma. It developed after my mastectomy, and was very persistent. I had it drained several times. Then, at one point my surgeon put a drain back in me to encourage it to heal up, which it did to an extent, but I still had a small seroma. This surgery (debridement) is intended to, essentially, re-injure the \"capsule\" that has formed between my flesh and my torso so that my flesh can heal back on to my torso. Case Report: \n Final Diagnosis\n A. Soft tissue, left chest, excision:\n -Fragments of fibrous fatty tissue, benign.\n -Negative for malignancy.\n Gross Description\n A. Specimen container is labelled Rhonda Joy Scheurer and SOFT TISSUE; SEROMA CAVITY FROM LEFT CHEST. Received in formalin is a rubbery, pale-tan, ragged, open sac of membranous tissue (6.1 x 3.9 x 0.7 cm). The outer surface is diffusely roughened with scant adherent adipose tissue to a maximum depth of 0.5 cm. The inner lining is smooth, pale-tan and glistening. Representative sections in cassettes A1–A2. | ||
| 2025-05-25: Drain Complain | ||
| I'm just so tired of all of this. I've been counting down the days until I get the port taken out (in June), and now I have a drain again (for the third time) because of the seroma. Having a drain sucks. Once the drain is out, the seroma is gone, and the port is out I will finally feel like my body is mine again. | ||
| 2025-05-29: Drain Removal | ||
| I hate hate hatey hate having a drain in me, but I hate having a seroma even more, so I've been sucking it up. Brent and I didn't camp when we were in Red Deer this past week because I didn't want to camp with a drain in me. Today the drain came out - yay! A fantastic Romanian nurse from Home Care came by in the morning, shared some laughs and pulled the drain out. Now all I need is to get rid of my damned port, and stop wearing compression and I will feel like my body is mine again. | ||
| 2025-05-30: Herceptin-Only Infusion 11 (FINAL) | ||
| Today is my final infusion of Herceptin. #17 of 17. I'm so glad that I got a port to get the infusions (thanks Stephanie), but I'll be so glad to have the sucker out on June 11. That will be my \"bell ringing day\" (figuratively, if not literally). | ||
| 2025-06-09: Surgeon Follow-Up on Seroma | ||
| Met with my lovely surgeon in her office. She thinks I'm healing up well and advised me to stop wearing the compression now. If the seroma is inclined to come back, she wants to know sooner rather than later. \n When I left I told her I hope I never see her again other than randomly running into her out in the world. | ||
| 2025-06-10: Return of the Seroma | ||
| I stopped wearing compression yesterday on my surgeon's advice. Today when we were having a video visit with Cheryl, I noticed that a small seroma had started forming again. Ugh.\n I put the compression back on and called the surgeon's office. She said to start using compression again and come see her in a week. :( | ||
| 2025-06-11: Port Removal | ||
| Today is the day that I feel my cancer treatment is officially concluded. My \"bell ringing\" day. I didn't physically ring a bell, and I don't want to... it's enough for me to ring the bell in my head. I'm so happy about it, however, my incision and staples hurt and I'm looking forward to getting them out next Thursday.\n\n My post-surgery nurse asked me if I was happy to be \"de-ported\". Of course, Brent found that quite amusing.\n\n The surgical team isn't supposed to let you keep your port, but I asked and they gave it to me. Photo below. Yes, that is the gadget that was under my skin for the last year. It had a tube about 5\" long coming out the top that made its way up from my collar-bone area to snake into my jugular vein. *shudder*
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| 2025-06-17: My friend, Bisoprolol | ||
| Before I was diagnosed with cancer, I had developed a tremor in my hands. It started in late 2021, but was so mild I was hardly aware of it. By early 2024, it was quite pronounced and bothersome. I researched tremors, and apparently, you can tell the difference between \"essential tremor\" tremors and Parkinson's Disease tremors thusly - essential tremors happen when you're trying to do something with your hands (e.g., grasp a glass to drink), while Parkinson's tremors happen when your limbs are at rest. Well, to my dismay, my tremors seemed to happen most when my hands were at rest.\n I talked to my GP about the tremors, and she said that one way to confirm what kind of tremor I had was to put me on a Beta Blocker, which are effective at calming essential tremors (but not Parkinson's). I started taking the Beta Blocker, and it did seem to calm the tremors, but it also made me severely depressed, so I stopped taking it, and the tremor resumed.\n Anyway, what does this all have to do with my cancer journey blog? Well, I was put on Bisoprolol as a protective measure against heart damage that can be caused by the Trastuzamab, which I was given for the last year because of my cancer being HER2+. When I started taking the Bisoprolol, though, my tremor all but disappeared and I've been almost tremor-free for months now.\n My oncologist (the nurse practitioner) was going to take me off of the Bisoprolol once my Trastuzamab was finished, but I was hoping that I could stay on it to control the tremor. I talked to my GP about it and she has agreed to keep me on the Bisoprolol. Yay! | ||
| 2025-06-18: Radiation Follow-Up | ||
| 2025-06-19: Staples Out | ||
I went in to get the staples out, which happened, but... barely. They took the staples out but my incision didn’t heal properly so I’m STILL not quite done with this. They were going to re-staple me but thankfully they decided to just close it with steri-strips so at least I don’t have staples anymore.
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| 2025-06-25: Echo | ||
| This was (hopefully) my last echo of my breast cancer treatment. Getting an echo is interesting and I was looking forward to it. I was NOT looking forward to getting the IV for the dye they use for part of the echo. It did not disappoint. The nurse put the IV into the back of my hand, which is definitely not my preferred spot for it. The echo tech was a nice enough guy, but he put the dye in in fast bursts, which were uncomfortable each time, but then at the end, when he flushed it with saline he pushed the saline in way too fast. It was shockingly painful. I think he stretched my vein out, very quickly. It has remained painful through the rest of the day and night... Interpretation Summary:\n 1. LV size and systolic function normal. LVEF 60% on contrast images. GLS -20% (normal).\n 2. RV size and systolic function normal.\n 3. Valvular function not assessed on this limited study.\n 4. No pericardial effusion | ||
| 2025-07-03: Oncology Follow-Up | ||
| I had my discharge meeting with Lovely NP this morning. It was pretty uneventful. She finished up by telling me to stay out of trouble, which I objected to, so she changed to \"Stay out of my hospital\", which is fine by me! Thanks for everything, Lovely NP! | ||
