My busy workload the past couple weeks has contributed to infrequent updates. For the most part I'm just happy that I seem to have a little more energy each week and that the benefits of the chemo getting out of my system seem to outweigh the hit I'm taking from the radiation.
Yesterday (Christmas Eve) I had my last treatment to the whole breast which is a huge breath of relief as my skin will get a little break. Safe to say that my skin is now rosey and my armpit is indeed very sore. From what I understand the soreness in that area is very typical and has more to do with friction from arm movement and clothing than the lack of protective gel the first few weeks of radiation. I can now put more aggressive skin treatment (oils/creams) that will provide better pain and healing relief, as well as a little bit of my lidocaine cream leftover from the port if I choose.
The last 5 treatments - starting tomorrow and ending on December 31 - will be targeted only to the area where the tumor was removed. The area will be small with a higher intensity radiation, but a lower energy - electrons versus protons. Fascinating, right?
Thursday, December 25, 2014
Sunday, December 14, 2014
Fourth Week Radiation
I finished my fourth week of radiation on Friday. So far things continue to go smoothly. I barely have a skin
burn on my breast. My armpit definitely has some color though and feels burned - no one told me the beams would hit this area. This makes me think the
calendula is doing it's job because that is the one place I haven't
been smearing it on 2-3 times a day for the past month. At this point there is a very
distinct diamond pattern so I won't miss the burn zone anymore.
During the week everything is such a blur with dropping off kids, going to work, going to get my treatment, exercising, running Christmas errands, picking up kids, taking kids to well-checks, going to my dentist appointment, cooking dinner, cleaning up after dinner.....I'm doing OK energy-wise during the day probably because I'm running on adrenaline all day long. After dinner and playtime Ryan heads up bath time, we read stories to the kids, and then I collapse on the couch and have been falling asleep by 8/830. I suppose any working parent would be tired at the end of the day after zig-zagging around town like I am these days, regardless of going through radiation. Definitely looking forward to a simplified schedule in January.
And P.S., my eyebrows must have got last week's memo as they are starting to sprout. My morning pencil routine is a bit less frustrating now.
During the week everything is such a blur with dropping off kids, going to work, going to get my treatment, exercising, running Christmas errands, picking up kids, taking kids to well-checks, going to my dentist appointment, cooking dinner, cleaning up after dinner.....I'm doing OK energy-wise during the day probably because I'm running on adrenaline all day long. After dinner and playtime Ryan heads up bath time, we read stories to the kids, and then I collapse on the couch and have been falling asleep by 8/830. I suppose any working parent would be tired at the end of the day after zig-zagging around town like I am these days, regardless of going through radiation. Definitely looking forward to a simplified schedule in January.
And P.S., my eyebrows must have got last week's memo as they are starting to sprout. My morning pencil routine is a bit less frustrating now.
Saturday, December 6, 2014
I know....it will grow back
I feel like I've been a pretty good sport about the whole hair loss thing, but it doesn't change the fact that I cringe at the sight of myself in a mirror. I've taken very few pictures of myself the past 5 months but I suppose it's not a bad idea to document just how bad things got so that when I look back years from now and complain of a bad hair day I can remember just how bad it could be. And to be fair I used the "retouch" tool on the bottom two images to lessen the dark undereye circles, it is actually worse. Not to mention the swelling around my eyes has actually gone down in the last few weeks. The first week I returned to work things were pretty swollen and I'm thankful there are no images to remind myself just how bad that looked.
Last week was rough on my eyebrows and yesterday I lost the last 3 stragglers. I hate to dwell on the eyebrows, but seriously they do A LOT for your face. I suppose there's always something you'd change about your looks, but since I was a teenager I've always thought I had a nice pair of eyebrows which makes it all the more painful to have lost them. I use a eyebrow liner to pencil them in everyday which is a very frustrating exercise in symmetry. It's one thing to enhance your thin eyebrows with a pencil, it's a totally different thing to draw them in from scratch trying to make sure one isn't higher than the other, or strangely arched looking a bit on the angry side. There is no way to recreate what I had with a pencil, instead it's this little thin archy brow that doesn't really look like anything like my natural brow. If I drew things the direction of my natural brow I'd look very sad. Sadder than I already look.
It sucks. And yes, I realize they will grow back.
Last week was rough on my eyebrows and yesterday I lost the last 3 stragglers. I hate to dwell on the eyebrows, but seriously they do A LOT for your face. I suppose there's always something you'd change about your looks, but since I was a teenager I've always thought I had a nice pair of eyebrows which makes it all the more painful to have lost them. I use a eyebrow liner to pencil them in everyday which is a very frustrating exercise in symmetry. It's one thing to enhance your thin eyebrows with a pencil, it's a totally different thing to draw them in from scratch trying to make sure one isn't higher than the other, or strangely arched looking a bit on the angry side. There is no way to recreate what I had with a pencil, instead it's this little thin archy brow that doesn't really look like anything like my natural brow. If I drew things the direction of my natural brow I'd look very sad. Sadder than I already look.
It sucks. And yes, I realize they will grow back.
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| July 2014, before chemo |
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| December 2014, 6 weeks post-chemo |
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| Make-up rookie yielding an eyebrow pencil |
Third Week Radiation
Everything continues to go smoothly. It is a nuisance to go to the hospital 5 days a week, but overall radiation is worlds easier than chemo. In terms of fatigue I feel like I have a bit more energy each week despite the radiation, which means my body is still recovering from the chemo. So far no major burn, it just looks like my left breast has started hanging out in a tanning bed.
Tuesday, November 25, 2014
Second Week Radiation
The first week of radiation was pretty uneventful. Going to radiation is kind of like going to the spa compared to chemo.... not really, but certainly easier. With the exception of Monday's when I meet with the rad onc the visits are very fast. From door-to-door it is seriously only 15-20 minutes with the majority of time spent changing my top in and out of scrubs. I know the routine and the techs are fast with getting me positioned with the help of my 3 tattoos - did I mention that I now have three little black (permanent) tattoos? The actual time spent getting my radiation dose is ~20 seconds - 10 seconds at one angle and 10 seconds at 180 degrees of the first angle.
The primary short-term side effects of radiation are said to be fatigue and skin burn. So far no skin burn and I think the fatigue probably still has more to do with the chemo recovery. Going to the gym has been a good thing to help with the fatigue and I generally feel more rejuvenated after going. Plus I seem to sleep better the nights that I go. There are days that I really just want to take a nap but unfortunately there isn't enough time to get home and rest before picking up Nash. If I do drag myself to the gym I feel better afterwards, but I will admit there was a day that I parked my car under a tree at Camel's Back Park and closed my eyes for 30 minutes. Seriously! Another side effect, and one that I have noticed, is that the muscles in my left side are very tight. Things have been tight since the lumpectomy and sentinal node biopsy surgery in June, but I definitely think it's increased. During my gym time I have been good at dedicating time to stretch my arms to restore the range of motion which will be very important over the next 5 weeks.
The primary short-term side effects of radiation are said to be fatigue and skin burn. So far no skin burn and I think the fatigue probably still has more to do with the chemo recovery. Going to the gym has been a good thing to help with the fatigue and I generally feel more rejuvenated after going. Plus I seem to sleep better the nights that I go. There are days that I really just want to take a nap but unfortunately there isn't enough time to get home and rest before picking up Nash. If I do drag myself to the gym I feel better afterwards, but I will admit there was a day that I parked my car under a tree at Camel's Back Park and closed my eyes for 30 minutes. Seriously! Another side effect, and one that I have noticed, is that the muscles in my left side are very tight. Things have been tight since the lumpectomy and sentinal node biopsy surgery in June, but I definitely think it's increased. During my gym time I have been good at dedicating time to stretch my arms to restore the range of motion which will be very important over the next 5 weeks.
Monday, November 17, 2014
First Day of Radiation
In terms of how I'm feeling now it's mainly fatigue. That doesn't sound like much and only someone who's been through chemo can really understand it. My eyes are SO heavy and tired and I have a dull headache from morning till night when I fall asleep on the couch watching tv at 8:30/9:00. Someday this will go away, but for the next 8 weeks it will be difficult to determine how much it has to do with the chemo and how much it has to do with the radiation. However, my mind and body are SO ready to go. This weekend I went to the gym with all intentions of walking on the treadmill for 40 minutes since I thought it would be a good idea to go easy on my poor, abused joints and muscles. That lasted all of 7 minutes before I was running. I just can't wait to resume normal activity and it felt so good! Thankfully my joints held up to my slow pace and although my legs were very sore the next day, it was the good kind of sore. Me and my bald head even got a "good job" from the teenage girl next to me who was rocking a 7:40 min/mile pace. Bless her heart, it totally made me tear up and made my day.
Today I had back-to-back appointments - the first a post chemo check-up with the medical oncologist, the second my first dose of radiation with the radiation oncologist. My appointment with the med onc went well and my blood counts were all back to within normal range with the exception of being a hair low on potassium - he recommended a couple bananas. I got the official go ahead to resume eating things like soft cheeses and sushi. Yay! Who's my next lunch date?
Radiation went smoothly as well. I really like my radiation oncologist which makes me happy that I stuck with the hospital that I did. I had considered going back to the other hospital which is close to my work for logistics sake since treatments are daily for 6.5 wks, but since I wasn't crazy about the rad onc that I'd met at the other facility I decided to just stick with the same hospital as my med onc. Another benefit of this hospital is that since they treat ~1/3 fewer patients than the other hospital, getting an appointment isn't a huge cluster fuck. Getting a radiation treatment is fast, painless, and no more blood draws. Of course it's the same standard medical answer regarding when the skin burn will begin or when I will start to feel the added fatigue - "everyone is different" - my rad onc says those things will probably start to happen by the third week.
My first week of work went well and I managed to get in 20 hours of work despite a whirlwind of doctors appointments. Now that I'm starting radiation daily my time at the hospital will still be crazy, but I'm excited to get into a routine with my new work/hospital schedule and just get this all over with. My new schedule will be to drop Nash off at school, start work around 8:30, go get zapped at 1:30, go to the gym or run on the greenbelt, and then pick up Nash at 3:30. Part of me feels a little guilty because I could technically get in another 30 minutes to an hour of work, but I intentionally carved out the extra time for me to exercise. Light exercise or walking if I'm really spent. A little bit of exercise is probably the best thing to combat my fatigue. On top of that, I just plain deserve some "me time" to exercise as I continue with my emotional, mental, and physical healing.
Wednesday, November 12, 2014
PowerPort is Gone
Just a quick update to say that the PowerPort removal went as planned. I was there at 5:30, they wheeled me back to the OR on schedule at 7:30, left the OR at 8:15 and drove myself home at 8:45. I can't tell you the number of times this conversation took place:
Them: We're just doing local?
Me: Yes, just local.
Everyone, except the surgeon, seemed quite shocked. The nurses and anesthesiologists didn't know what to do with themselves. In the end it was a few pokes to numb the area and some pulling apparently because he had to rotate the thing to get it out without leaving a big scar. I'm very thankful that I don't have to feel the effects of the gas for the next several days. No one is expecting me at work today so I am now home and prepared to watch a movie on this chilly day with nurse Lilly and take a much needed nap before the kids get out of school. Nurse Ryan is busy making a nice, healthy juice for me.
Them: We're just doing local?
Me: Yes, just local.
Everyone, except the surgeon, seemed quite shocked. The nurses and anesthesiologists didn't know what to do with themselves. In the end it was a few pokes to numb the area and some pulling apparently because he had to rotate the thing to get it out without leaving a big scar. I'm very thankful that I don't have to feel the effects of the gas for the next several days. No one is expecting me at work today so I am now home and prepared to watch a movie on this chilly day with nurse Lilly and take a much needed nap before the kids get out of school. Nurse Ryan is busy making a nice, healthy juice for me.
Thursday, November 6, 2014
Day 10, Last Week on Work Leave
The past week has been typical of the last 3 rounds of T. A week ago I walked Harrison Blvd with the kids on Halloween for a little over an hour which was nice and then headed home with very sore hips. The weekend was my worst days in terms of bone and muscle pain and I spent much of Saturday trying to sleep after coming off of the steroid. On top of everything else I still had my cold. Day 10 now and my cold is finally almost gone. I still have some decent muscle pain, but it's getting better. I had 3 sessions with the acupuncturist this last round which was relaxing - it's no match for chemo - but it's relaxing anyways.
The biggest news is that Pam goes back to NY on Saturday and I go back to work on Monday. It's a little overwhelming to think about returning to normal life again but it's time. I get mixed messages from healthcare professionals about going back to work as some think I should wait it out until radiation is over, but there are definitely people who see no problem with me returning. My job has been extremely supportive of my leave and I'm so thankful for that - they have not pressured me in the least to return and have simply said they're looking forward to having me back. On top of that I will return to some pretty good project work - if you're into designing wetlands. There will be more on Pam later this weekend....she certainly warrants her own special post. She'll be missed dearly by all 4 of us but we're happy that she's returning home to Dean and the rest of the family.
Next week my treatment schedule will also start to ramp up for radiation. On Monday the 10th I have a "simulation" with the radiation oncologist where they will do a CT scan of my left breast to locate the heart and lungs, and then they'll give me 3 small tattoo's so that for the next 6.5 weeks they can aim their laser beams at my chest, but avoid the heart and lung as much as possible. Radiation will then begin on the 17th. I'll go in 5 days per week and was told it'll be a couple minutes of radiation each time and about 45 minutes door-to-door with set-up time as they get me positioned.
On top of that I'm having the surgeon remove my port on Wednesday the 12th. I feel it on a daily basis, it did it's job, and now I want it gone. Plus, if I wait until 2015 to do it it'll cost me ~$5K. The surgeon himself isn't actually that expensive, but anytime you get the hospital operating room involved it gets ridiculous. The surgeon said that he can do it with local anesthesia only if I wanted so thankfully I will avoid more general anesthesia. I've been told removing the port is a ton easier than putting it in as they don't need to do any searching or threading - they just make one cut and the catheter pulls right out.
Life is about to get busier again.
The biggest news is that Pam goes back to NY on Saturday and I go back to work on Monday. It's a little overwhelming to think about returning to normal life again but it's time. I get mixed messages from healthcare professionals about going back to work as some think I should wait it out until radiation is over, but there are definitely people who see no problem with me returning. My job has been extremely supportive of my leave and I'm so thankful for that - they have not pressured me in the least to return and have simply said they're looking forward to having me back. On top of that I will return to some pretty good project work - if you're into designing wetlands. There will be more on Pam later this weekend....she certainly warrants her own special post. She'll be missed dearly by all 4 of us but we're happy that she's returning home to Dean and the rest of the family.
Next week my treatment schedule will also start to ramp up for radiation. On Monday the 10th I have a "simulation" with the radiation oncologist where they will do a CT scan of my left breast to locate the heart and lungs, and then they'll give me 3 small tattoo's so that for the next 6.5 weeks they can aim their laser beams at my chest, but avoid the heart and lung as much as possible. Radiation will then begin on the 17th. I'll go in 5 days per week and was told it'll be a couple minutes of radiation each time and about 45 minutes door-to-door with set-up time as they get me positioned.
On top of that I'm having the surgeon remove my port on Wednesday the 12th. I feel it on a daily basis, it did it's job, and now I want it gone. Plus, if I wait until 2015 to do it it'll cost me ~$5K. The surgeon himself isn't actually that expensive, but anytime you get the hospital operating room involved it gets ridiculous. The surgeon said that he can do it with local anesthesia only if I wanted so thankfully I will avoid more general anesthesia. I've been told removing the port is a ton easier than putting it in as they don't need to do any searching or threading - they just make one cut and the catheter pulls right out.
Life is about to get busier again.
Thursday, October 30, 2014
Day 3, Chin Up
I'm doing better today, my emotions are in check and I'm focused on the task at hand - recovering from my last round of chemo. Reese is out of school due to parent-teacher conferences so today we're watching Annie together for the first time. :)
Wednesday, October 29, 2014
Day 2, No Celebrations Here
You'd think that I'd be thrilled that the chemo is over, and I am, but I'm far from being in any state of jubilation. My discussion with the nurse practitioner awakened a sleeping giant and I am still struggling with turning the waterworks off. I'm angry that my doctor was not available for my last pre-chemo appointment as he knows me better and probably would have known that he was walking into a mine field by bringing up some of the things she did. It really could have waited until my next appointment in a few weeks after I'm through the worst of the physical issues from the chemo. She really should have just let me rejoice in the accomplishment of finishing chemo.
It's not sobbing, I just can't get my eyes to stop watering with emotion. It's been awhile since I've cried and I suppose maybe it's healthy to release some of these emotions. I've spent the last several months shelving many emotions just to get through the chemo and now I'm moving on to the next phases. My treatment and recovery are not over, far from it. It's going to take years to learn how to cope and carry on with the "high risk" label because of my diagnosis at a young age and all the recommendations that go with it.
Sorry such a buzzkill. The only bright side that I have to report is that after several weeks of Lilly sleeping in a new nest in the back of our closet, last night she decided to snuggle up and spoon with me all night long. Nice to have the company during a restless night. Pets truly are amazing.
It's not sobbing, I just can't get my eyes to stop watering with emotion. It's been awhile since I've cried and I suppose maybe it's healthy to release some of these emotions. I've spent the last several months shelving many emotions just to get through the chemo and now I'm moving on to the next phases. My treatment and recovery are not over, far from it. It's going to take years to learn how to cope and carry on with the "high risk" label because of my diagnosis at a young age and all the recommendations that go with it.
Sorry such a buzzkill. The only bright side that I have to report is that after several weeks of Lilly sleeping in a new nest in the back of our closet, last night she decided to snuggle up and spoon with me all night long. Nice to have the company during a restless night. Pets truly are amazing.
Tuesday, October 28, 2014
Chemo #8, Day 1
Despite my cold my blood counts were good enough to go. Finally, the last day of chemo. I finished on schedule with no delays in treatment and no dose reductions - no small feat.
I'm doing just OK as I'm trying to shut the waterworks off. Maybe I'm somewhat emotional about this hell finally being over, but mostly I think it's because the nurse practitioner that we met with this morning pushed a hot button for me. (An issue that I'm not yet ready to discuss.) Why couldn't she have just let it go and let me get over one hurdle before bringing up new ones?
I'm doing just OK as I'm trying to shut the waterworks off. Maybe I'm somewhat emotional about this hell finally being over, but mostly I think it's because the nurse practitioner that we met with this morning pushed a hot button for me. (An issue that I'm not yet ready to discuss.) Why couldn't she have just let it go and let me get over one hurdle before bringing up new ones?
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| The last bag of poison |
Monday, October 27, 2014
Day Before Last Chemo and Radiation Schedule
I am definitely fighting a mild cold, so there were no bike rides this weekend on my "good days." Best I could do was a hike and walk around the block. We also hosted a small birthday party for Reese, both she and Nash had a very good time. Praying that my blood counts are good enough tomorrow to get this over with, though I imagine I'll probably have this cold for the next couple weeks after I get knocked back down again. My body is so ready for this to be over with. I'm so fatigued and my muscles are so weak. My skin and lips are so dry - over the last week I've been drinking more water than I have my entire life, several days I've got 100 ounces down which is a LOT of water for someone my size, and yet my skin is still so dry. My lips feel like I haven't drank in days and yesterday I put some makeup on my face to try to hide the bags under my eyes for Reese's party and I couldn't wait to take it off and slather on moisturizer when the last guests left as the makeup made it feel even more dry. On top of that Ryan and I went out for my favorite Thai food on Saturday night and ever since I've been a puffy mess. I really do look like hell.
Here's an update on the radiation schedule. Last week I had my first appointment with the radiation oncologist, whom I really liked. Not that I'm excited about more abuse, but I'm excited to get this all over with. I'm also financially driven to get this all over with in 2014. Although I'm thankful for my insurance - without it I suspect the total bill would have been around $300K-$400K - we still have a high-deductible healthcare plan that has cost us plenty of money. Cancer treatments are insanely expensive and I bet I could meet the maximum out-of-pocket amount in a week, which would double the cost for us. That would be so depressing and I'd much rather spend that money doing good things with my family next year. After I finish chemo there are 9.5 weeks left in the year, with 6.5 weeks of radiation. The radiation oncologist prefers that patients recover for at least a month before starting radiation, but she understood my request and agreed to starting after just 3 weeks. The biggest short-term side effects (I won't mention the rare, but possible, long-term side effects) with radiation is a wicked burn on my shrunken breast and fatigue, though my doctor told me that usually her patients who haven't gone through chemo complain most about the fatigue. Apparently chemo patients have actually commented that they feel more energized during radiation, which is not actually the case but it's just that the chemo is finally starting to get out of the body. She explained it like you're running at 50% on chemo and that by the time radiation starts you might be at 70%, but nothing will ever bump you back down to 50%. I can only hope this is the case and that being at 70% will feel good.
So assuming chemo goes as planned tomorrow, I will start radiation on November 17 and end on December 31. Happy New Year to me, right? I'll go in 5 days/wk which leaves us trapped here in Boise for the holidays. Thankfully we will have my parents here for a week at Thanksgiving and my in-laws here again for Christmas to keep us company and help out.
Here's an update on the radiation schedule. Last week I had my first appointment with the radiation oncologist, whom I really liked. Not that I'm excited about more abuse, but I'm excited to get this all over with. I'm also financially driven to get this all over with in 2014. Although I'm thankful for my insurance - without it I suspect the total bill would have been around $300K-$400K - we still have a high-deductible healthcare plan that has cost us plenty of money. Cancer treatments are insanely expensive and I bet I could meet the maximum out-of-pocket amount in a week, which would double the cost for us. That would be so depressing and I'd much rather spend that money doing good things with my family next year. After I finish chemo there are 9.5 weeks left in the year, with 6.5 weeks of radiation. The radiation oncologist prefers that patients recover for at least a month before starting radiation, but she understood my request and agreed to starting after just 3 weeks. The biggest short-term side effects (I won't mention the rare, but possible, long-term side effects) with radiation is a wicked burn on my shrunken breast and fatigue, though my doctor told me that usually her patients who haven't gone through chemo complain most about the fatigue. Apparently chemo patients have actually commented that they feel more energized during radiation, which is not actually the case but it's just that the chemo is finally starting to get out of the body. She explained it like you're running at 50% on chemo and that by the time radiation starts you might be at 70%, but nothing will ever bump you back down to 50%. I can only hope this is the case and that being at 70% will feel good.
So assuming chemo goes as planned tomorrow, I will start radiation on November 17 and end on December 31. Happy New Year to me, right? I'll go in 5 days/wk which leaves us trapped here in Boise for the holidays. Thankfully we will have my parents here for a week at Thanksgiving and my in-laws here again for Christmas to keep us company and help out.
Thursday, October 23, 2014
Send Prayers for Good Health
It's that time of year. The kids started bringing home runny noses last week and sneezes have continued since then, though no major illnesses. Then we heard that head lice is running around school. Yuck! Then a few days ago Ryan came down with something - fatigue, runny nose, sore throat - and the poor guy has been sleeping in the office on an air mattress to try to spare me the bug.
I made it out for a bike ride yesterday afternoon, though it was very short as I felt more fatigued than a couple weeks ago. Today I definitely seemed more fatigued than a normal day 10 and now and then can feel a slight ache in my throat. Am drinking lots of warm tea and taking vitamin C now - despite the fact that doctors don't like you to take antioxidant supplements while on chemo.....God forbid the vitamin C hurt the chemo!!! A controversial chemo recommendation that I give or take. Will be early to bed tonight and more rest tomorrow. Send prayers for good health so that next Tuesday's chemo will not be delayed - we all need this to be over.
I made it out for a bike ride yesterday afternoon, though it was very short as I felt more fatigued than a couple weeks ago. Today I definitely seemed more fatigued than a normal day 10 and now and then can feel a slight ache in my throat. Am drinking lots of warm tea and taking vitamin C now - despite the fact that doctors don't like you to take antioxidant supplements while on chemo.....God forbid the vitamin C hurt the chemo!!! A controversial chemo recommendation that I give or take. Will be early to bed tonight and more rest tomorrow. Send prayers for good health so that next Tuesday's chemo will not be delayed - we all need this to be over.
Wednesday, October 22, 2014
Chemo #7, Day 9
There is definitely a pattern which makes me a good guesser. Sunday (day 6) was by far the worst day in terms of bone pain, and today (day 9) appears to be the first day with a noticeable decrease. I should be able to motivate for a short bike ride today which always helps me feel that much better. Never underestimate the power of endorphins.
In terms of other good news that will hopefully help me through the final push, yesterday I discovered that my insurance plan covers up to 15 acupuncture visits per year. Sad that I just now discovered this, but at least I did figure it out. Early on I had made a couple visits to get acupuncture in efforts to relieve the bone pain from the shot - it was relaxing but no match for the shot. I quit going because I was too utterly exhausted to drag myself to the acupuncturist and pay more money for something that wasn't actually solving the problem. Acupuncture is so subtle and gentle, I suppose there was no way that going once every 2 weeks was ever going to solve anything.The next three weeks will be a great experiment to see how much regular acupuncture treatments can make a difference as I know what it feels like without it. The added bonus is that I LOVE the acupuncturist - he is calm, compassionate and overall very genuine person.
In terms of other good news that will hopefully help me through the final push, yesterday I discovered that my insurance plan covers up to 15 acupuncture visits per year. Sad that I just now discovered this, but at least I did figure it out. Early on I had made a couple visits to get acupuncture in efforts to relieve the bone pain from the shot - it was relaxing but no match for the shot. I quit going because I was too utterly exhausted to drag myself to the acupuncturist and pay more money for something that wasn't actually solving the problem. Acupuncture is so subtle and gentle, I suppose there was no way that going once every 2 weeks was ever going to solve anything.The next three weeks will be a great experiment to see how much regular acupuncture treatments can make a difference as I know what it feels like without it. The added bonus is that I LOVE the acupuncturist - he is calm, compassionate and overall very genuine person.
Thursday, October 16, 2014
Chemo #7, Day 2/3
Recovering today after a rough night after chemo #7. The past two times after the T I experienced tingling in my forearms the evening after the chemo, but this time around I had tingling all over my body the entire night - my forearms, wrists, hands, calves, shins, feet, scalp and cheeks. On top of the restlessness of the steroid and the hot flashes I got very little sleep. By the next day most of the tingling was gone and after talking to a nurse she suggested it may have been an allergic reaction and she may be correct as the last two times I started taking my Claritin to combat the upcoming bone pain from the shot, and this time around I forgot to take it so that would have been the only difference. Even with my neatly packed pill box, which Ryan methodically fills with supplements weekly, I have so many pills that I have a hard time keeping things straight.
The kids are at school now and I will try to rest as much as I can while I enjoy the effects of the steroid on the bone pain from the shot. Nurse Lilly is at my side as we speak. By this evening I will begin tapering from the steroid again cause my stomach will have had enough and the bone pain from the chemo will start ramping up in the next couple days again, if like last time peaking around day 6. Counting the days...
The kids are at school now and I will try to rest as much as I can while I enjoy the effects of the steroid on the bone pain from the shot. Nurse Lilly is at my side as we speak. By this evening I will begin tapering from the steroid again cause my stomach will have had enough and the bone pain from the chemo will start ramping up in the next couple days again, if like last time peaking around day 6. Counting the days...
Tuesday, October 14, 2014
The Wind Beneath My Eyebrows
On Friday (day 10) the bone pain subsided enough to get out on my bike for a short ride. It felt good but my enthusiasm was crushed when I got home to shower and noticed a patch of eyebrows missing. I literally went so fast I blew my fucking eyebrows off. The good majority of hair on my entire body is gone, but up until this point I've managed to maintain a few eyelashes and a good majority of my beloved eyebrows so I was hopeful they were here to stay. Over the weekend I started to do some research on Biotin supplements, Latisse, and Rogaine as I'm eager to start the regrowth process next month. Unfortunately while doing my research I discovered that it is not uncommon to keep your eyebrows during chemo and then have them fall out afterwards, and for some reason 3 months is a magic number. Since then there have been other eyebrow and eyelash casualties, so I suspect that after the next round they will have had enough of the chemo just like the rest of my hair follicles. This sucks. I'm not one for lots of makeup, but I'm going to have to learn. Yesterday at the grocery store I noticed the young 20-something checker who has beautiful, natural looking makeup with pencil on her brows and was tempted to ask a complete stranger for a lesson. If any of my local friends know any experts in penciled in eyebrows and eyeliner please let me know. There is a makeup class through the hospital I suppose too.
On the plus side it felt so good to ride my bike, though after 4 months of inactivity since my surgery I'm so damn slow. I even made it to the nearby trailhead and rode the easy part of singletrack home. There's nothing like being back on the bike with loud and sometimes angry music blasting through your head. On the way down the road I rode my brakes like an old lady so spare my poor eyebrows, efforts that are probably futile. After today only one more to go....help me to soldier on and not dwell in the vanity of cancer treatment, and just embrace the fact that a month from now I will regularly be enjoying the things that I love most.
On the plus side it felt so good to ride my bike, though after 4 months of inactivity since my surgery I'm so damn slow. I even made it to the nearby trailhead and rode the easy part of singletrack home. There's nothing like being back on the bike with loud and sometimes angry music blasting through your head. On the way down the road I rode my brakes like an old lady so spare my poor eyebrows, efforts that are probably futile. After today only one more to go....help me to soldier on and not dwell in the vanity of cancer treatment, and just embrace the fact that a month from now I will regularly be enjoying the things that I love most.
Monday, October 6, 2014
Day 6, Same Old
Looking back at my blog from 2 weeks ago is like a total repeat. As soon as I get off the steroid the joint pain ramps way up again. Only modification is that this time I quit the steroid a day early due to my sour stomach and wanting to get a good nights sleep. Fortunately the kids are back in school and I have more rest/quiet time. If like last time, by day 9 or 10 the bone pain will die down a bit and I should feel better for the weekend. Right now I just cringe at the thought of anyone touching me, though I do still muscle through Nash's morning "family hug" request before school.
Friday, October 3, 2014
Day 2/3, No Hugs Please
Just when I have a few "good days" I'm quickly reminded that this isn't over yet and that I still have 3 solid weeks of this horrible bone pain, among other things. The bone pain set in yesterday afternoon only a few hours after the shot so I'm not sure if the shot kicked in faster or if it's from the chemo, maybe both. I started the steroid again last night and woke up with the pain level bumped down a notch. The steroid has it's own undesirable side effects (I'm very tired, but cannot sleep) but it is such a relief to have found something that bumps to pain down to a more tolerable level.
Wednesday, October 1, 2014
Chemo #6, Day 1
From the waiting room on round #6..... First an update since I took a vacation from blogging. The past several days I've been feeling better than I have been. The joint pain was pretty much gone by last Friday/Saturday and we had a good weekend. We rented a vacation rental in nearby McCall for a couple nights over the weekend which was a nice, much needed getaway. We ate cinnamon rolls and made chocolate cookies, relaxed the video reins and let the kids watch 3 Disney movies, and went for a family bike ride.
Also, the past two days I felt a decrease in fogginess in my head and trusted myself for a couple short rides. I've never been so proud and happy for riding 3 & 6 miles on a paved road! As I was riding up the road (very slowly) I laughed to myself about how many times I have probably said/thought the words "I think I'm going to have a heart attack!" while riding a bike, and that now I am actually probably at a greater risk for having a heart attack after the drugs that I've been on. How's that for motivation to take it easy. I talked about this with my Dr. today and how I will probably always be afraid to exercise vigorously, to which he explained that the drugs I've been on will not cause a heart attack, just a slightly increased chance of congestive heart failure. Details, details..... I'm being a little dramatic and he also has tried to assure me this chance is low, but how do you get that out of your head?
Regarding the fogginess....as I was going down the side effect checklist this a.m. with my nurse I explained that I've been feeling "less drunk" the past few days while behind the wheel to which her eyes lit up. I just assumed that it was standard and hardly worth mentioning to be feeling a little drunk while behind the wheel. Fortunately I do very little driving these days. Definitely looking forward to this being over and the "drunkness" to continue to subside.
In other cancer related news it is fair to say that I'm sick of being bald. I have gone "naked" all summer but with the cooler weather have actually started wearing my little "chemo caps." Amazing how much heat your hair holds in. This weekend when I had my headwear and sunglasses on Ryan told me that I look like I'm in the witness protection program. I'm now in search of some cute slouch beanies to keep my head warm. I will return to work in November and fortunately that will be a good time to sport hats in the office. I was doing OK with the bald thing but it's funny that recently it bothers me. Maybe because I'm feeling a little better now that I am off the AC, and when you really feel like shit you quit caring and don't care that you look like shit?
Now onto October. I get nailed three times this month.....today, the 14th and the 28th. With any luck I stay healthy and that will be it.
Also, the past two days I felt a decrease in fogginess in my head and trusted myself for a couple short rides. I've never been so proud and happy for riding 3 & 6 miles on a paved road! As I was riding up the road (very slowly) I laughed to myself about how many times I have probably said/thought the words "I think I'm going to have a heart attack!" while riding a bike, and that now I am actually probably at a greater risk for having a heart attack after the drugs that I've been on. How's that for motivation to take it easy. I talked about this with my Dr. today and how I will probably always be afraid to exercise vigorously, to which he explained that the drugs I've been on will not cause a heart attack, just a slightly increased chance of congestive heart failure. Details, details..... I'm being a little dramatic and he also has tried to assure me this chance is low, but how do you get that out of your head?
In other cancer related news it is fair to say that I'm sick of being bald. I have gone "naked" all summer but with the cooler weather have actually started wearing my little "chemo caps." Amazing how much heat your hair holds in. This weekend when I had my headwear and sunglasses on Ryan told me that I look like I'm in the witness protection program. I'm now in search of some cute slouch beanies to keep my head warm. I will return to work in November and fortunately that will be a good time to sport hats in the office. I was doing OK with the bald thing but it's funny that recently it bothers me. Maybe because I'm feeling a little better now that I am off the AC, and when you really feel like shit you quit caring and don't care that you look like shit?
Now onto October. I get nailed three times this month.....today, the 14th and the 28th. With any luck I stay healthy and that will be it.
Thursday, September 25, 2014
Day 10, An Upswing
Today was the first morning of this cycle that I felt a noticeable change in the bone pain. I am still achy, but it feels more like I did too much yard work yesterday vs. the walking on eggshells full-body bruise that I've had since the weekend. I did laundry, I made gazpacho, I cleaned up my mess.... if I had a Twitter account I'd probably say something like #feelinglessworthless. On top of that I'm meeting a friend for lunch and am excited to see her sweet face and get out of the house.
Sunday, September 21, 2014
Day 6, Weathering New Chemo Patterns
As nice as it was that the steroid made the post Neulasta joint pain more tolerable, I am now weathering extended joint pain most likely from the chemo T itself. It's nice to be spared the nausea of the AC, but the past couple days of extended joint pain has reminded be that the last 8 weeks of this shit will be no smooth sailing, just different issues and different hard days. Yesterday I was extremely exhausted, probably for lack of sleep the days prior due to all the steroids, I have a very sour stomach which is probably a combination of the chemo and the steroid, and I still have head to toe joint pain which even throbs when I lay on the couch and read or watch TV. Again, I just want to be done with this all and have my un-chemically altered body back.
Thursday, September 18, 2014
Day 3, Steroid is Helping
The new steroid is helping with my joint pain. I still have joint pain, but at a tolerable level. Normally on day 3 I wake up, cry over my cereal, and head back to bed for 36 hrs with pain, grogginess, and nausea. I don't think my back is up for a walk today, but I am okay in a seated position so I will be able to pass the time with family, books, and TV which will help my emotional state vs. being alone and horizontal in a dark room for 36 hrs. Plus, being upright will help me be able to eat, drink and stay hydrated better which is so important right now. And it didn't hurt to take a shower today! I'm sure the drawback to being on the steroid for a few days will be fatigue coming off of it as there were multiple times last night that I was wide awake for an hour or so, but for now I'm grateful for the pain reduction. I've never fully understood the addiction to narcotics, to me the nasty side effects are worse and linger longer than any pain relief provided. But now I understand why NFL players like their roids so much.
Wednesday, September 17, 2014
Day 2
So far T is treating me better than the AC. My sleep was interrupted last night (probably the steroids) but I did not get the raging headache, bed sweats, or swollen eyelids like the last 4 times. I had my evil shot this a.m. to boost white blood counts and have started to feel the aches by late afternoon. Tomorrow will likely be the bad day again, with the joint pain from the shot. We picked up the new prescription as another effort to battle the pain. I mis-spoke when I said it was a non-narcotic pain reliever (we already tapped those out). The new prescription is a steroid so we shall see. Both the Dr. and the pharmacist who filled the prescription told me that I could be very moody while on the medication (2 days on, then 2 days tappering off), so keep me in your prayers that it helps the pain and give your sympathy to Ryan and Pam who will take the brunt of my "moodiness".
Tuesday, September 16, 2014
Chemo #5, Day 1, Home Now
Chemo #5 is done. I had a nice homemade pizza dinner and at this very moment am actually feeling less queasy and tired than I did when I went in this a.m. The new chemo drug is supposed to have less nausea effect, so my current state is probably a function of the IV steroid that is still given to prevent nausea. Right now I'm just kind of puttering around wondering what the hell is going to happen next? Common side effects of the new drug include joint pain (more joint pain, on top of the evil shot joint pain?!) and neuropathy. If I get joint pain it will be sooner than later, but the neuropathy is typically something that gradually sets in. Last time the joint pain from the shot was very bad, so bad. Despite being adamant not to take any pain narcotics for personal reasons, I've caved a bit and this time around I'm going to try a prescription non-narcotic for a few days and experiment with more clashing side effects. The claritin, ibuprofen, tylenol, and acupuncture just aren't cutting it.
Speaking of drugs. If you want to fall asleep fast I suggest you get a syringe and inject benadryl into you jugular vein. [kidding of course...] Within seconds I was INSANELY sleepy today and slurring my language like I'd just drank a bottle of wine. Holy moly! I managed to stay awake just long enough to scarf down my Bento salad.
Off to watch Homeland....
Speaking of drugs. If you want to fall asleep fast I suggest you get a syringe and inject benadryl into you jugular vein. [kidding of course...] Within seconds I was INSANELY sleepy today and slurring my language like I'd just drank a bottle of wine. Holy moly! I managed to stay awake just long enough to scarf down my Bento salad.
Off to watch Homeland....
Chemo #5, Day 1
My red and white blood counts continue to drop, but I am still good to go for the heavy drugs. Quick post from the chemo chair as the sedation period is going to start soon. Today is a new drug and my IV cocktail includes benadryl so I will soon be very sleepy. Benadryl because today's chemo drug includes a risk of allergic reaction which is also why it is administered very slowly. Today's visit will be 3 hours longer than the last drug. Going to be a long day. We got here at 9 and everything is behind schedule because today is the hospital's long-awaited conversion to electronic records. Everyone I've spoken with has complained about it. Poor babies. I have started to remind everyone who bitches and moans about the new system that they could be injected with poison today. Probably not going to get out of here until 3:30 or 4.
Also, today I remembered my fucking lidocaine cream.
UPDATE: OMG! OMG! OMG! My head is boggy and I feel drowsy and she hadn't even finished injecting the benedryl.
Also, today I remembered my fucking lidocaine cream.
UPDATE: OMG! OMG! OMG! My head is boggy and I feel drowsy and she hadn't even finished injecting the benedryl.
Sunday, September 14, 2014
Talking About Cancer and Not Talking About Chemo
My initial emotional dump on the blog was helpful, but I'm finding that keeping up with regular posts is going to be difficult. On the bad days I am too physically drained to even think about it. Plus there is so much of the same....insane joint pain, drowsiness, and nausea on the bad days, and lingering fatigue and nausea on the good days. I start to come out of the cloud a bit on day 8 and am able to go for walks, eat tasty food, and go for post dinner bike rides around the block with the kids. There is a definite pattern and the only thing that seems to change is that the fatigue lingers a little longer each time, probably because my red blood cell counts continue to get a little lower each time.
On the good days I want to put treatment as far out of my head as possible and don't want to talk or blog about anything chemo related. I don't like to see the word 'chemotherapy' on a book or hospital paper, I can't drive past the hospital, I don't want people to ask me where I am on the chemo path (i.e., 4 down, 4 to go), I don't want people to speculate that the second drug might be better because that is still yet to be determined, or the nausea starts to build up from anxiety. I just want to talk about what is going on in the lives of others because it is so much more interesting and controllable. What I am dealing with is totally uncontrollable so why bother talking about it when there's nothing you can do about it.
I have made some progress in the last few days talking about cancer with Reese though. Throughout this process I've been afraid to even use the word 'cancer' with her out of fear that she'd use it and someone will say to her, "I know someone who died of cancer." The social worker (& others) have recommended that I be more upfront with my kids about the topic. I was loaned several children's books and have started reading a couple to her which she seems to enjoy. When I read something that we've been through she eagerly says, "just like us." She isn't emotional while listening though I have to work to not get choked up from time to time. It will be good for her to understand that the treatment isn't going to go on forever and that eventually I'll be on the path to normal again. Plus, as much as she'd like it, it's good for her to comprehend that Grammy isn't going to live with us forever, LOL!
On the good days I want to put treatment as far out of my head as possible and don't want to talk or blog about anything chemo related. I don't like to see the word 'chemotherapy' on a book or hospital paper, I can't drive past the hospital, I don't want people to ask me where I am on the chemo path (i.e., 4 down, 4 to go), I don't want people to speculate that the second drug might be better because that is still yet to be determined, or the nausea starts to build up from anxiety. I just want to talk about what is going on in the lives of others because it is so much more interesting and controllable. What I am dealing with is totally uncontrollable so why bother talking about it when there's nothing you can do about it.
I have made some progress in the last few days talking about cancer with Reese though. Throughout this process I've been afraid to even use the word 'cancer' with her out of fear that she'd use it and someone will say to her, "I know someone who died of cancer." The social worker (& others) have recommended that I be more upfront with my kids about the topic. I was loaned several children's books and have started reading a couple to her which she seems to enjoy. When I read something that we've been through she eagerly says, "just like us." She isn't emotional while listening though I have to work to not get choked up from time to time. It will be good for her to understand that the treatment isn't going to go on forever and that eventually I'll be on the path to normal again. Plus, as much as she'd like it, it's good for her to comprehend that Grammy isn't going to live with us forever, LOL!
Monday, September 8, 2014
Day 6
Ugh...still so tired but will post an update while I'm awake trying to hydrate. The blog had been helpful to communicate, but I will say that the chances of me posting an update 3-4 days out of chemo will be slim, most likely none. I was in bed for over 36 hours with severe joint pain, among other things. I couldn't even motivate to turn on my audio book. I'm too out of it to write, nor do I have the stomach to sit there and catalog all the things that are wrong with me. I had a few short bursts of tears over those few days mostly due to the physical pain and frustration that nothing makes it better. The last couple days I had a couple tears that were more emotional, I think because I get past the really bad physical pain and then I'm really worn down, tired, and tired of being so nauseous.
Today I actually cried thinking about how I missed work (currently on short-term disability). Just another form of the "I want my life back" phase. Not that I'm the type of person who is overly excited to go to work, but I miss it. My job isn't one of those jobs where I come home feeling like I made life-changing accomplishments, but I miss feeling productive. I'm so NOT productive right now. The closest that I get to using my brain is every other week when I get my head back I sort through the mail and bills and evaluate our financial state of affairs. Mostly I miss the people that I work with. An engineering job may not sound very exotic, but the people that I work with are amazing, sincere, smart and many of them wickedly funny. I miss being a part of a group, I miss regular lunches with a dear friend, I miss the inappropriate e-mails!
Along the same lines of feeling so utterly useless, I seriously don't know what we would be doing without the help of my mother-in-law, Pam, right now. She is here to help and has stepping in as the second responsible adult better than we could have imagined. She's up at the crack of dawn helping Ryan with breakfast, deflecting tantrums, making lunches, taking kids to school, grocery shopping, cooking, cleaning...on and on. I still feel like the kids are handling this well for their age, and I'm sure it has a lot to do with the extra family care. Having happy kids helps a ton with my emotional state as well. Any parent will tell you how quickly it can make you sad, or your blood boil, at the sound of your kids struggling. I'm so thankful that I don't have one more layer of stress on my body and mind. Thank you, Grammy.
Today I actually cried thinking about how I missed work (currently on short-term disability). Just another form of the "I want my life back" phase. Not that I'm the type of person who is overly excited to go to work, but I miss it. My job isn't one of those jobs where I come home feeling like I made life-changing accomplishments, but I miss feeling productive. I'm so NOT productive right now. The closest that I get to using my brain is every other week when I get my head back I sort through the mail and bills and evaluate our financial state of affairs. Mostly I miss the people that I work with. An engineering job may not sound very exotic, but the people that I work with are amazing, sincere, smart and many of them wickedly funny. I miss being a part of a group, I miss regular lunches with a dear friend, I miss the inappropriate e-mails!
Along the same lines of feeling so utterly useless, I seriously don't know what we would be doing without the help of my mother-in-law, Pam, right now. She is here to help and has stepping in as the second responsible adult better than we could have imagined. She's up at the crack of dawn helping Ryan with breakfast, deflecting tantrums, making lunches, taking kids to school, grocery shopping, cooking, cleaning...on and on. I still feel like the kids are handling this well for their age, and I'm sure it has a lot to do with the extra family care. Having happy kids helps a ton with my emotional state as well. Any parent will tell you how quickly it can make you sad, or your blood boil, at the sound of your kids struggling. I'm so thankful that I don't have one more layer of stress on my body and mind. Thank you, Grammy.
Saturday, September 6, 2014
Day 4
Will try to post tomorrow...I'm still so tired. Yesterday was a lot of physical pain, I'm slowly digging out of this...
Thursday, September 4, 2014
Day 2
I'm tired, very tired. Got home yesterday and almost immediately went to bed because I was tired and nauseous. Before chemo they give you a couple IV steroids designed to ward off nausea because the last thing they want is for you is to vomit (which I have not yet). The nausea that I have is best described as spending too much time on a roller-coaster, all day long. Laying down seems to help so Lilly and I began our audio books which was nice to pass time.
Another example of just how intuitive pets are....normally at night-time Lilly sleeps at the foot of our bed. However, last night from the get go she cuddled up and spooned with me all night long. My first night of sleep is very interrupted from the drugs, but every 1.5-2 hours when I would wake up I was greeted by a purring cat.
Today I got a slow start, had breakfast and visited with Pam, got on the internet for awhile, made it to my appointment for the evil shot, got home and ate lunch and have been in bed trying to sleep since. No luck, so I'm writing an update and then will be back to the audio book. If like the last 3 rounds, the joint pain will start in my cheek and jawbones this evening and will have spread to my shoulders, arms, and back by tomorrow a.m. Interesting thing is that I don't get the joint pain in my legs. Such a shame to waste the power of my large bones and have the bone marrow in my puny cheek and arm bones work overtime. The next 2 days will be the tough ones.
I received a few very thoughtful care packages in the last couple days, wonderful dinners, and many well-wishes. Thank you from the bottom of my heart.
Another example of just how intuitive pets are....normally at night-time Lilly sleeps at the foot of our bed. However, last night from the get go she cuddled up and spooned with me all night long. My first night of sleep is very interrupted from the drugs, but every 1.5-2 hours when I would wake up I was greeted by a purring cat.
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| Nurse Lilly |
I received a few very thoughtful care packages in the last couple days, wonderful dinners, and many well-wishes. Thank you from the bottom of my heart.
Wednesday, September 3, 2014
Chemo #4, Day 1
Writing from the hospital on my last 30 minutes of chemo #4. The whole process of the blood draw, meeting with the Dr., and the infusion takes about 4 hours. When we got here I realized that I forgot to apply my special numbing cream for my port and blurted out, "shit, I forgot my fucking lidocaine!" which the waiting room took in stride. The nurse iced it and was successful with her first stick, fortunately.
A week ago I had called my Dr. wanting to talk about not going forward with the last round of AC. His nurse called and said he wouldn't talk to me over the phone, but that we would talk about it during my next appointment. We talked today and he was willing to skip the last AC if I elected and move on to the T. I inquired if there was any data for cutting things short, to which there is not, and he just offered that the textbook recommendation is to complete the treatment, of course. I decided to go ahead with it. I don't want to ever think, "what if I had just finished...." After treatment I will have to learn how to live without fear of recurrence, but whatever happens after this at least I'll know it wasn't for me not trying.
I feel really tired today and I haven't even left yet. My body is beat down and it probably doesn't help that the waterworks started yesterday. As soon as the nurse put on the cape and gloves my heart started to race. Today was the first day that I cried while the nurse injected the A. Normally the oncology nurses annoy me because they treat you like it's no big deal, like you're here to get a flu shot. Since I was crying and my eyes were red they were more compassionate today.
A week ago I had called my Dr. wanting to talk about not going forward with the last round of AC. His nurse called and said he wouldn't talk to me over the phone, but that we would talk about it during my next appointment. We talked today and he was willing to skip the last AC if I elected and move on to the T. I inquired if there was any data for cutting things short, to which there is not, and he just offered that the textbook recommendation is to complete the treatment, of course. I decided to go ahead with it. I don't want to ever think, "what if I had just finished...." After treatment I will have to learn how to live without fear of recurrence, but whatever happens after this at least I'll know it wasn't for me not trying.
I feel really tired today and I haven't even left yet. My body is beat down and it probably doesn't help that the waterworks started yesterday. As soon as the nurse put on the cape and gloves my heart started to race. Today was the first day that I cried while the nurse injected the A. Normally the oncology nurses annoy me because they treat you like it's no big deal, like you're here to get a flu shot. Since I was crying and my eyes were red they were more compassionate today.
Tuesday, September 2, 2014
Good Days
It's been two weeks since my last chemo (I got an extra day this round due to scheduling around the holiday), so it was nice to be able to enjoy the Labor Day weekend when I wasn't feeling lousy. My appetite is back and we enjoyed a nice dinner prepared by our favorite Filipino, tacos out, and a Bardenay night. Right now my biggest dietary issue is staying well hydrated as the chemo has damaged my taste buds which makes food taste bland and water taste gross. It's tough to drink a lot without consuming too much sugar, any artificial sweeteners, or caffeine in the evening. Lots of green tea.
The nausea is minimal and my fatigue is best described as feeling like I had a bad nights sleep, so not too bad. We couldn't motivate for the annual Labor Day camping in the Sawtooths, but had good family time nonetheless. Since Ryan and I are not sporting to the usual level there is less tag-team parenting and the kids enjoy the time with us all together. Going through this with young kids is not easy, but there are some things that are probably easier than if they were older. My kids have pretty low expectations and just love to be with us. I'm sure if they were older they would have been more disappointed that we didn't do anything ultra special for the long weekend. We took several rides around the neighborhood, went to the park, gardened, and even took a group ride on a kid friendly trail. Seeing the enthusiasm on both of my kids faces to ride bikes with us is brings so much joy! And fortunately a group ride around the neighborhood or a toddler friendly trail is easier on my joints than chasing them around the playground.
I also had some time to do get some suggestions from friends and do some research for audio books in preparation of the days ahead that I'm bound to my bed. It's been a long time since I've "read" for fun. I also got a chemotherapy meditation cd from the social worker, though I'm not sure I'll listen to it. I'm still struggling with the whole meditation and "mind, body, spirit" concepts that people have recommended....a topic of another post maybe.
The nausea is minimal and my fatigue is best described as feeling like I had a bad nights sleep, so not too bad. We couldn't motivate for the annual Labor Day camping in the Sawtooths, but had good family time nonetheless. Since Ryan and I are not sporting to the usual level there is less tag-team parenting and the kids enjoy the time with us all together. Going through this with young kids is not easy, but there are some things that are probably easier than if they were older. My kids have pretty low expectations and just love to be with us. I'm sure if they were older they would have been more disappointed that we didn't do anything ultra special for the long weekend. We took several rides around the neighborhood, went to the park, gardened, and even took a group ride on a kid friendly trail. Seeing the enthusiasm on both of my kids faces to ride bikes with us is brings so much joy! And fortunately a group ride around the neighborhood or a toddler friendly trail is easier on my joints than chasing them around the playground.
Saturday, August 30, 2014
My Story
In October 2013 a dear friend had her first mammogram which came back abnormal. Although a stressful experience, thankfully her lump was benign. Her news prompted me to do a self exam which was something that I had not been doing for months, if not years, and I immediately found a lump in my left breast. I had my annual exam with my OB/GYN in January so I just waited to discuss it with him then. He felt the lump and explained to me that it was not uncommon for women's breasts to be lumpy and that given my young age of 36 it was most likely nothing. He suggested waiting for 3 months to see if it changed with my cycles and if it did not go away we'd move forward with a mammogram.
On April 19 I ran my first half marathon. The Race to Robie Creek, dubbed "the toughest half marathon in the Northwest" because of over 2,000 ft of ascent and 1,700 ft of descent, was super fun and I felt fit, happy and excited to be in shape for the upcoming summer.
Then the first week of May we decided to take an impromptu road trip to Portland to visit my longtime friend and her family and do something different. We rented a small apartment in the Pearl District in downtown Portland, ate lots of good food, rode the MAX lightrail and in the end our long weekend urban adventure was one of the funnest trips that we'd taken as a family of four. Looking back I'm so thankful we took that random trip before the shit hit the fan.
My lump didn't change and due to scheduling of appointments did not actually have a mammogram until the end of May. I was annoyed because my insurance was not going to cover the mammo because I was only 37. The first uncomfortable shots showed nothing - quite shocking since the chickpea sized lump was easily felt by hand. Turns out that young breasts are dense which makes mammos tough to read because it is all white, a good lesson on how important it is to do self exams. They took more shots and really squished things in there, which showed an abnormal shape and by the look on the radiologist face and her reaction I knew it was not good. Two day later I had an ultrasound guided biopsy and on May 23 I was diagnosed with invasive ductal carcinoma. A month after feeling so healthy and good about Robie Creek.
After that there was a lot of waiting, which is difficult when you just want to do whatever possible to rid your body of cancer as soon as possible. It's a lot of time to cry and think the worst. Since I was adopted and have no family medical history I went ahead with genetic testing to guide me through the lumpectomy vs. mastectomy decision which took about a month to get results. Then it takes about a month to get on the books for surgery. I had a lumpectomy and sentinel node biopsy on June 20. A week later, I learned that the breast cancer had spread to the lymph node and that I would likely need chemo. Surviving chemo has been way tougher physically and emotionally than I had imagined. After chemo I will have 6 weeks of radiation.
The part about the race and the road trip may not seem applicable. To me it is devastating how quickly I went from being happy, healthy and able to take on new adventures with the three people that I love most. I just want my life back. After this diagnosis there are some things that will forever be changed. And this diagnosis has not only robbed me of the things I love most, but it's been devastating for Ryan too. Seeing your loved one in pain is terrible. Not to mention that right now he's unable to enjoy the things he loves on a regular basis because he's caring for and picking up the slack for me. It's so unfair.
On April 19 I ran my first half marathon. The Race to Robie Creek, dubbed "the toughest half marathon in the Northwest" because of over 2,000 ft of ascent and 1,700 ft of descent, was super fun and I felt fit, happy and excited to be in shape for the upcoming summer.
Then the first week of May we decided to take an impromptu road trip to Portland to visit my longtime friend and her family and do something different. We rented a small apartment in the Pearl District in downtown Portland, ate lots of good food, rode the MAX lightrail and in the end our long weekend urban adventure was one of the funnest trips that we'd taken as a family of four. Looking back I'm so thankful we took that random trip before the shit hit the fan.
My lump didn't change and due to scheduling of appointments did not actually have a mammogram until the end of May. I was annoyed because my insurance was not going to cover the mammo because I was only 37. The first uncomfortable shots showed nothing - quite shocking since the chickpea sized lump was easily felt by hand. Turns out that young breasts are dense which makes mammos tough to read because it is all white, a good lesson on how important it is to do self exams. They took more shots and really squished things in there, which showed an abnormal shape and by the look on the radiologist face and her reaction I knew it was not good. Two day later I had an ultrasound guided biopsy and on May 23 I was diagnosed with invasive ductal carcinoma. A month after feeling so healthy and good about Robie Creek.
After that there was a lot of waiting, which is difficult when you just want to do whatever possible to rid your body of cancer as soon as possible. It's a lot of time to cry and think the worst. Since I was adopted and have no family medical history I went ahead with genetic testing to guide me through the lumpectomy vs. mastectomy decision which took about a month to get results. Then it takes about a month to get on the books for surgery. I had a lumpectomy and sentinel node biopsy on June 20. A week later, I learned that the breast cancer had spread to the lymph node and that I would likely need chemo. Surviving chemo has been way tougher physically and emotionally than I had imagined. After chemo I will have 6 weeks of radiation.
The part about the race and the road trip may not seem applicable. To me it is devastating how quickly I went from being happy, healthy and able to take on new adventures with the three people that I love most. I just want my life back. After this diagnosis there are some things that will forever be changed. And this diagnosis has not only robbed me of the things I love most, but it's been devastating for Ryan too. Seeing your loved one in pain is terrible. Not to mention that right now he's unable to enjoy the things he loves on a regular basis because he's caring for and picking up the slack for me. It's so unfair.
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| 2014 Race to Robie Creek |
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| Wining and dining in Portland. Good mental note to buy less stuff, take more trips. |
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| Days before chemo #1 |
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| Pixie cut by Claire, day of chemo #2. Shaved head completely 3 days later. |
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| Me and my live-in support team. Hawaiin party planned by Reese and Grammy. Just before chemo #3. |
Why Blog?
Because chemo is breaking me.
When I was diagnosed and began treatment several people suggested a CaringBridge (or other) blog site to journal and efficiently keep family and friends informed. Being a private person I was reluctant to blog about this. Also, I'm self conscious of my writing and I didn't want a any written hard evidence out there with ridiculous and depressing subject matter. Have you ever read an old journal? Yuck, don't do it. Just burn it.
The third round of chemo broke me. I found myself crying, laying in bed for days feeling physical and emotional pain. I called a social worker who I've seen in person since. She used words like anxiety and depression to describe me - words I'm not used to hearing. I hold things in. This is also hard for my family and friends who care who don't hear from me for days until I reach a breaking point. So I am going to take her advice and put things out there to see if it helps.
Starting on Wednesday when I get nailed again I will try to provide regular, shorter posts to describe how my day went. I hope it helps my friends and family better understand what is really going on, that it will help me release a little, and that someone will occasionally have a bright idea and words of encouragement that will help keep me going. Since my recent Facebook post when I was in the thick of the chemo and broke down a bit, I've received daily FB messages, txt messages, e-mail, and mail with words of support. Your words often make me cry, but they help me release emotions too and they help. So thank you.
When I was diagnosed and began treatment several people suggested a CaringBridge (or other) blog site to journal and efficiently keep family and friends informed. Being a private person I was reluctant to blog about this. Also, I'm self conscious of my writing and I didn't want a any written hard evidence out there with ridiculous and depressing subject matter. Have you ever read an old journal? Yuck, don't do it. Just burn it.
The third round of chemo broke me. I found myself crying, laying in bed for days feeling physical and emotional pain. I called a social worker who I've seen in person since. She used words like anxiety and depression to describe me - words I'm not used to hearing. I hold things in. This is also hard for my family and friends who care who don't hear from me for days until I reach a breaking point. So I am going to take her advice and put things out there to see if it helps.
Starting on Wednesday when I get nailed again I will try to provide regular, shorter posts to describe how my day went. I hope it helps my friends and family better understand what is really going on, that it will help me release a little, and that someone will occasionally have a bright idea and words of encouragement that will help keep me going. Since my recent Facebook post when I was in the thick of the chemo and broke down a bit, I've received daily FB messages, txt messages, e-mail, and mail with words of support. Your words often make me cry, but they help me release emotions too and they help. So thank you.
My Chemo Treatment
My chemo regimen is called dose dense AC-->T. ACT stands for A-Adriamycin, C-Cytoxan,
T-Taxol.
This regimen was prescribed for me because some professionals have referred to me as "high-risk". WTF?! My breast cancer stage was only 2A, I am BRCA1/2 negative, and for the most part very healthy; but because I was only 37 when diagnosed (36 when I found it) they apparently consider me "high risk". Dose dense means that it is given every 2 weeks (more frequent). It is an aggressive chemo only recommended to those who are young and healthy enough to take on the risks - I should feel so flattered, right?
There are numerous short and long-term risks associated with this chemo. I won't name them because it's too depressing. I can only hope that the short term side effects will go away quickly after this hell is over, that I will be able to find peace with the crummy long-term side effects, and hope that the rare but life threatening side effects will not apply to me.
I searched high and low for reassurance that natural and holistic approaches were enough to fight this. Trust me. There are so many amazing stories out there where people have resisted conventional western medicine with great success. Unfortunately deep down I believe that there are probably numerous stories where this approach did not work. A very cold oncologist presented me with the statistic that if I do nothing I could be dead in 7 years. So I am moving forward as best I can with combining conventional medicine with natural and holistic approaches.
The treatment is every two weeks for 4 months. Assuming all goes as planned and I don't get sick or my white blood cell counts too low the schedule is as follows:
Chemo #1 (AC) - July 21 DONE!
Chemo #2 (AC) - August 5 DONE!
Chemo #3 (AC) - August 19 DONE!
Chemo #4 (AC) - September 3
Chemo #5 (T) - September 16
Chemo #6 (T) - October 1
Chemo #7 (T) - October 14 (Happy 13th Wedding Anniversary, Jenny and Ryan)
Chemo #8 (T) - October 28
On top of the chemo they give you other drugs, including steroids, which help control the nausea. I am still nauseous but to date I haven't vomited. I have been nauseous since July 21, just varying levels of it. The steroids have side effects which jack me up so I can't sleep, even though my body and mind are utterly exhausted. Then the day after each chemo I go in for a shot which basically causes your bone marrow to go into overdrive to boost white blood cells. This has HORRIBLE side effects. About 8 hours later my cheek and jawbones start to ache. Shortly after that every bone in my upper body aches HARD for about 36 hours. During this time I lay in bed as gravity makes things worse. I've tried Claritin, another drug with side effects that work for some people for the joint pain, but not me. I've tried acupuncture, which was nice but I didn't do it this last time around because I couldn't drag myself out the door. Only time helps with this one. Dr's are more than happy to prescribe more drugs, they all have side effect. Before I was diagnosed with cancer I hardly took aspirin for headaches, so the amount of chemicals in my body is so unbelievably overwhelming both physically and mentally.
There are numerous short and long-term risks associated with this chemo. I won't name them because it's too depressing. I can only hope that the short term side effects will go away quickly after this hell is over, that I will be able to find peace with the crummy long-term side effects, and hope that the rare but life threatening side effects will not apply to me.
I searched high and low for reassurance that natural and holistic approaches were enough to fight this. Trust me. There are so many amazing stories out there where people have resisted conventional western medicine with great success. Unfortunately deep down I believe that there are probably numerous stories where this approach did not work. A very cold oncologist presented me with the statistic that if I do nothing I could be dead in 7 years. So I am moving forward as best I can with combining conventional medicine with natural and holistic approaches.
The treatment is every two weeks for 4 months. Assuming all goes as planned and I don't get sick or my white blood cell counts too low the schedule is as follows:
Chemo #1 (AC) - July 21 DONE!
Chemo #2 (AC) - August 5 DONE!
Chemo #3 (AC) - August 19 DONE!
Chemo #4 (AC) - September 3
Chemo #5 (T) - September 16
Chemo #6 (T) - October 1
Chemo #7 (T) - October 14 (Happy 13th Wedding Anniversary, Jenny and Ryan)
Chemo #8 (T) - October 28
On top of the chemo they give you other drugs, including steroids, which help control the nausea. I am still nauseous but to date I haven't vomited. I have been nauseous since July 21, just varying levels of it. The steroids have side effects which jack me up so I can't sleep, even though my body and mind are utterly exhausted. Then the day after each chemo I go in for a shot which basically causes your bone marrow to go into overdrive to boost white blood cells. This has HORRIBLE side effects. About 8 hours later my cheek and jawbones start to ache. Shortly after that every bone in my upper body aches HARD for about 36 hours. During this time I lay in bed as gravity makes things worse. I've tried Claritin, another drug with side effects that work for some people for the joint pain, but not me. I've tried acupuncture, which was nice but I didn't do it this last time around because I couldn't drag myself out the door. Only time helps with this one. Dr's are more than happy to prescribe more drugs, they all have side effect. Before I was diagnosed with cancer I hardly took aspirin for headaches, so the amount of chemicals in my body is so unbelievably overwhelming both physically and mentally.
How Can You Help Me?
If I had a clearly defined answer to this question I wouldn't be here now. This is new territory for me, all I do know is that I need help. This is what I know so far and I will update this list as I go.
What Helps Me
1) Stories of real life long-term survivors. I need to see the other side, and have faith that this horrific treatment process works. Stories about 50+ yr cancer survivors, who although it took several years to ultimately find peace, lived the rest of her life with a a smile on her face. Stories about the friend of a friend who was diagnosed with breast cancer at age 31, hadn't yet had kids, underwent chemo, radiation, and 5 years of tamoxifen which was sure to leave her sterile, and now in her late 30's actually conceived and is due to have a baby in less than a month.
2) Bring me and my family healthy food. Even though my MIL Pam is here to help, it's one less chore to deal with and leaves more time and energy for good things. We have an account set up on the following food prep scheduling website: http://www.takethemameal.org/. The password is kindig.
What Doesn't Help Me
1) Don't tell me that you or a loved one worked and/or continued to train/run/ride during chemo; it makes me feel like I'm failing. Not all chemo is created equal nor is any one person's response to it. Google Melissa Etheridge, a bad ass and amazing woman, and see her description of chemo. In 2005 she battled breast cancer and went through the same chemo regimen that I am on now, she made it through 5 of the 8 cycles and quit after that. Quitting chemo is a thought that goes through my head every day.
2) Don't tell me about what short and long-term side effect you or a loved one experienced while on chemo. I'm living the horrible short term side effects and live in fear of the long-term ones. I know you're trying to commiserate with me, but it isn't actually helpful for me.
As a side note, I know many of people have offered to help with childcare. So far I've taken up very few offers and want to offer somewhat of an explanation for that. We especially have lots of offers for playdates for Reese which is a dilemma that any parent of more than one child will understand. Reese is 5 (almost 6), has an established set of friends, has no problems separating from her parents, and for the most part is a very amicable and easy kid to have over. Nash isn't quite there yet. He just turned 3, is still mastering the potty, is just now starting to play with friends instead of beside friends, and now that he has started preschool is starting to make his own friends. This doesn't mean that he doesn't LOVE playdates. The problem comes when sissy goes on playdates and he feels left out and we're left with an emotional little boy who asks "where's sissy?" the entire time she is away. Playdates for Reese alone give her the social interaction that she deserves, but at a time when we need help it doesn't really lighten the load for Ryan and I.
What Helps Me
1) Stories of real life long-term survivors. I need to see the other side, and have faith that this horrific treatment process works. Stories about 50+ yr cancer survivors, who although it took several years to ultimately find peace, lived the rest of her life with a a smile on her face. Stories about the friend of a friend who was diagnosed with breast cancer at age 31, hadn't yet had kids, underwent chemo, radiation, and 5 years of tamoxifen which was sure to leave her sterile, and now in her late 30's actually conceived and is due to have a baby in less than a month.
2) Bring me and my family healthy food. Even though my MIL Pam is here to help, it's one less chore to deal with and leaves more time and energy for good things. We have an account set up on the following food prep scheduling website: http://www.takethemameal.org/. The password is kindig.
What Doesn't Help Me
1) Don't tell me that you or a loved one worked and/or continued to train/run/ride during chemo; it makes me feel like I'm failing. Not all chemo is created equal nor is any one person's response to it. Google Melissa Etheridge, a bad ass and amazing woman, and see her description of chemo. In 2005 she battled breast cancer and went through the same chemo regimen that I am on now, she made it through 5 of the 8 cycles and quit after that. Quitting chemo is a thought that goes through my head every day.
2) Don't tell me about what short and long-term side effect you or a loved one experienced while on chemo. I'm living the horrible short term side effects and live in fear of the long-term ones. I know you're trying to commiserate with me, but it isn't actually helpful for me.
As a side note, I know many of people have offered to help with childcare. So far I've taken up very few offers and want to offer somewhat of an explanation for that. We especially have lots of offers for playdates for Reese which is a dilemma that any parent of more than one child will understand. Reese is 5 (almost 6), has an established set of friends, has no problems separating from her parents, and for the most part is a very amicable and easy kid to have over. Nash isn't quite there yet. He just turned 3, is still mastering the potty, is just now starting to play with friends instead of beside friends, and now that he has started preschool is starting to make his own friends. This doesn't mean that he doesn't LOVE playdates. The problem comes when sissy goes on playdates and he feels left out and we're left with an emotional little boy who asks "where's sissy?" the entire time she is away. Playdates for Reese alone give her the social interaction that she deserves, but at a time when we need help it doesn't really lighten the load for Ryan and I.
Take Them a Meal
We greatly appreciate all the meals that our friends have provided over the last few months and have had several more offers so we finally got around to registering on a food prep scheduling website. As most people know we do have some amazing help here, but having a meal prepared once or twice a week would leave more time and energy for good things.
http://www.takethemameal.org/
The password is kindig. I've included some notes to help answer the usual question of "what do we like." I've also filtered the dates so that people don't think we need to be fed every day of the week for the next three months, but if you'd like to bring something on a Mon/Wed/Fri/Sun I think you can add dates back to the list.
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