8 down, 20 to go! That puts me at just about 1/3 of the way through. It's a pretty easy drive down and back to Emerson hospital in Concord MA. And it's a nice break from the work day. Mom and I chat in the car and sometimes we eat out for lunch on our way back. The treatments have gone smoothly. Once a week I meet with the doctor so he can look at my skin and discuss how things are going. They also take images once a week to verify the treatment area matches the initial mapping. As for me, my shoulder feels a little tight, the skin is starting to get red, and it feels tighter every treatment. I'm going to start adding more stretching or yoga to my weekly routine to try to keep things loose. I'm also religious about applying the skin gel 2x/day. I do feel more tired, very much so after a glass of wine, I'm guessing this is due to the chemo pill. I'm also super thirsty all the time. There's so much to keep up with in this process - 2x/day gel, 2x/day pill, daily PT, and treatment. No treatment or pills on weekends, and once I get to 2 weeks I stop taking the chemo pill for a week. Think I need to get myself one of those dry erase calendars for the fridge to keep up with all this!
Mom flew back to Florida today. She has been there every step of the way helping me get through each phase of treatment. She's seen the best and worst of times, and has always encouraged me to stay positive and take it easy on myself. If that wasn't enough she regularly made us dinner and kept my house spotless, no easy feat with little boys and pets. Brady cried his eyes out as we drove away from the airport telling me to turn around cause he could "still see Grandma's hair." She has done so much for us, she will truly be missed, but I'm sure Jeff will be happy to have her back!
Friday, November 18, 2016
Wednesday, November 9, 2016
First Day of Radiation and Oral Chemo
Today I began the next phase of my cancer treatment regiment with radiation and oral chemo. I will be receiving daily radiation for 6 weeks or 28 treatments. This number is slightly less than originally planned if the lumpectomy had been successful. For my first treatment I had to lay on the table, put my arms overhead, and they setup the radiation machine using lasers and coordinates on my chest. This part took about 30 minutes. At first they didn't think I'd actually be getting radiation today, but I was in the system for it, so I did get my first treatment which took about 10 minutes. For the treatment the machine shoots radiation from 3 different angles about 1ft from my body - angled from behind my left arm, angled from above right arm, and over my left breast. The technicians ask me over the speaker to hold my breath for each shot, this pushes your chest up and your heart down and out of the path of the radiation. After the treatment I felt some needles and pins in my left shoulder, but the technician thought that was attributable to having to lay in that position for so long not the radiation itself. Driving to and from the hospital took 25min each way, and with 15min for treatment, I should be able to get there and back and be done in ~1hr 10min. It would take me that long just to drive to the hospital in Boston!
Today I also began the oral chemo pill. I really struggled with this last night. Having an appointment and a nurse delivering IV chemo meant someone administered it to me and I had to do it. The chemo pill means I have to do it and keep myself disciplined and on schedule. And I'm not exactly excited to be going back on chemo. But come morning I thought about my boys and how I need to be around for my husband, so the 5-7% increase in survival with this pill made it easier to swallow. I take 2 in the morning and 2 at night, within 30 minutes of a meal, and with a full glass of water. About 30 min after taking the pills I felt a little groggy, but otherwise no side effects. I will take the pills 2 weeks on, 1 week off, with a lab check for blood levels. So far so good.
Given the residual disease, margins, and receptor status, I pursued a second opinion from Dana Farber on my remaining treatment plan. It's great they can do it all online and have full access to my records since they share the same patient gateway as MGH. It took ~1.5 weeks for the DF doctor to perform the assessment, and like before, they came back with the same recommendations as MGH - radiation, Xeloda, and Tamoxifen. A few important points differed from MGH. First, ovarian suppression would only come into play if ovarian function resumes, however given low ER+ status it may be outweighed by possible side effects. They also referenced another chemo trial but I'm not eligible in the trial period due to when I finish my other treatments. DF also considered my margins to be positive. Positive or negative, the treatment plan is the same. Insurance won't likely cover a second 2nd opinion but it gave me reassurance I'm on the best treatment plan given my type of cancer.
This week I also returned to work after being on medical leave for 5 weeks. The first meeting I was in was discussing the same topic when I left. In other areas it was great to see the progress and hard work by the team paying off. The absolute hardest part about getting back into work was the pace, it is incredible. It has taken me 2-3 days just to get back in the mindset to be able to receive, process, and act on some many signals coming in at once - emails, calls, texts, IMs, meetings, action items, etc etc etc. The people who work on F-35 are truly amazing to handle it all.
This whole cancer process has taught me to value your time with loved ones, accept help knowing you may never be able to repay it, and make yourself a priority. I'm also a better manager/leader because I have had to practice delegation, empowering a team, and coaching. Having cancer has afforded me the opportunity to be home, spend time with family and friends, and prioritize the things most important in life. I am very fortunate to be where I am with all the people who support me. Yes, cancer sucks, but I am grateful for the refocus on that which is most important - happiness.
Today I also began the oral chemo pill. I really struggled with this last night. Having an appointment and a nurse delivering IV chemo meant someone administered it to me and I had to do it. The chemo pill means I have to do it and keep myself disciplined and on schedule. And I'm not exactly excited to be going back on chemo. But come morning I thought about my boys and how I need to be around for my husband, so the 5-7% increase in survival with this pill made it easier to swallow. I take 2 in the morning and 2 at night, within 30 minutes of a meal, and with a full glass of water. About 30 min after taking the pills I felt a little groggy, but otherwise no side effects. I will take the pills 2 weeks on, 1 week off, with a lab check for blood levels. So far so good.
Given the residual disease, margins, and receptor status, I pursued a second opinion from Dana Farber on my remaining treatment plan. It's great they can do it all online and have full access to my records since they share the same patient gateway as MGH. It took ~1.5 weeks for the DF doctor to perform the assessment, and like before, they came back with the same recommendations as MGH - radiation, Xeloda, and Tamoxifen. A few important points differed from MGH. First, ovarian suppression would only come into play if ovarian function resumes, however given low ER+ status it may be outweighed by possible side effects. They also referenced another chemo trial but I'm not eligible in the trial period due to when I finish my other treatments. DF also considered my margins to be positive. Positive or negative, the treatment plan is the same. Insurance won't likely cover a second 2nd opinion but it gave me reassurance I'm on the best treatment plan given my type of cancer.
This week I also returned to work after being on medical leave for 5 weeks. The first meeting I was in was discussing the same topic when I left. In other areas it was great to see the progress and hard work by the team paying off. The absolute hardest part about getting back into work was the pace, it is incredible. It has taken me 2-3 days just to get back in the mindset to be able to receive, process, and act on some many signals coming in at once - emails, calls, texts, IMs, meetings, action items, etc etc etc. The people who work on F-35 are truly amazing to handle it all.
This whole cancer process has taught me to value your time with loved ones, accept help knowing you may never be able to repay it, and make yourself a priority. I'm also a better manager/leader because I have had to practice delegation, empowering a team, and coaching. Having cancer has afforded me the opportunity to be home, spend time with family and friends, and prioritize the things most important in life. I am very fortunate to be where I am with all the people who support me. Yes, cancer sucks, but I am grateful for the refocus on that which is most important - happiness.
The radiation room and starry sky
Thursday, October 27, 2016
Radiation Mapping Session
Today I had my radiation mapping session. Overall it took about 1.5 hours. First we met with the nurse and went over the skin care recommendations while we waited for the doctor. She gave me an aloe vera gel to apply 2x/day during radiation. They also have a 24hr hotline should something strange arise and I need to talk to a nurse (sudden blistering, lung or heart problems, etc). Then I met with the radiation oncologist. He has seen the path report and given the residual disease, the thin margins, and my age he agreed with taking Xeloda chemo during radiation. He also got a second opinion from a colleague of his in Boston who had the same recommendation. In the past he has had a few patients on Xeloda while in radiation. If the toxicity to the skin becomes too much they will stop me on the Xeloda. I really am going to be frankenstein when this is all over. After we reviewed the side effects, skin irritation and fatigue being the primary, I signed the consent and went in to be mapped. Two nurses prepped me on the bed with my arms over my head, put marking tape on me, and had me take a deep breath and hold it while they took a CT image. Once they were happy with the setup and images they gave me 3 tattoos - one in the middle of my chest, one above my breast, and one under my arm. The tattoos look like pinheads and felt like a minor sting. Then I got my schedule - I officially start on 11/9 and more importantly finish on 12/20 just in time for the holidays! I've been told the skin irritation peaks 1-2 weeks after completing radiation so maybe I'll be giving happy new years high fives instead of hugs. Either way I'm excited to be getting into this 3rd phase of treatment and go into 2017 with the majority of this mess behind me.
As an aside, the last three nights I have managed to sleep through the night with the help of Tylenol and Ativan. Thank goodness, it only took 3.5 weeks post-op to get a good nights sleep!
As an aside, the last three nights I have managed to sleep through the night with the help of Tylenol and Ativan. Thank goodness, it only took 3.5 weeks post-op to get a good nights sleep!
Never Thought I'd Be Here
The Familiar Uniform
Mail Order Chemo
Tuesday, October 25, 2016
3.5 Weeks Post-Op - Systemic Considerations
This weekend we made a quick weekend escape to Vermont for an old friend's wedding. It rained (or snowed) the whole time. While checking into the hotel and trying to get everything in from the rain I pulled a left chest muscle. It has been extremely painful ever since. I also started my rehab stretches in preparation for radiation mapping later this week. Unfortunately with the pulled muscle this is not easy. I'm having to stretch, ice, rest, and take Advil. Hopefully it gets more manageable by Thursday.
Today I also had my follow up with the medical oncologist (cancer doc). I hadn't seen him since my last chemo so we got caught up on the surgeries and results. We talked about the "faint" ER+ status, this was mainly in the breast tissue while the lymph nodes were triple negative. Since the tumors shrunk like swiss cheese, and given the type and extent of my cancer, I have a 30% chance of recurrence in 5 years. This reduces to 23-25% with Xeloda taken 6 months following radiation, and to 20% following 5 yrs of Tamoxifen. Another treatment he is considering is ovary suppression injections following Xeloda. However he indicated this is a difficult clinical decision given my tumor "faint" ER+ status and the bilateral mastectomy, the treatment needs to fit the need. Without signs of residual cancer elsewhere in the body this may be unnecessary punishment on the body. We still have time to sort it out.
In 2 days I go for my radiation mapping. Hope all works out given my chest soreness so I can start that phase of treatment. I did just get approved for 8 weeks of leave, but figure with recovery and follow up appointments behind me, and radiation underway, I can go back at 5 weeks. So looking forward to 2017!
Today I also had my follow up with the medical oncologist (cancer doc). I hadn't seen him since my last chemo so we got caught up on the surgeries and results. We talked about the "faint" ER+ status, this was mainly in the breast tissue while the lymph nodes were triple negative. Since the tumors shrunk like swiss cheese, and given the type and extent of my cancer, I have a 30% chance of recurrence in 5 years. This reduces to 23-25% with Xeloda taken 6 months following radiation, and to 20% following 5 yrs of Tamoxifen. Another treatment he is considering is ovary suppression injections following Xeloda. However he indicated this is a difficult clinical decision given my tumor "faint" ER+ status and the bilateral mastectomy, the treatment needs to fit the need. Without signs of residual cancer elsewhere in the body this may be unnecessary punishment on the body. We still have time to sort it out.
In 2 days I go for my radiation mapping. Hope all works out given my chest soreness so I can start that phase of treatment. I did just get approved for 8 weeks of leave, but figure with recovery and follow up appointments behind me, and radiation underway, I can go back at 5 weeks. So looking forward to 2017!
Happy to have my hair back but after Halloween the white has got to go
Tuesday, October 18, 2016
2 Week Post-Op Checkup - Recovering Well
Today I saw both my surgeons for a 2 week follow up appointment. First I met with Dr Winograd in Plastics. He removed the remaining two stitches in my incisions and talked through my recovery. All indications are that I am healing well. At this point I can start stretching to increase my range of motion (so far left has better range than right) but no resistance exercises or lifting anything heavier than 10 lbs until 6 weeks post-op. I can also resume driving. Will have to wait another 2 weeks before I can put lotion or vitamin E on the incisions. This shouldn't bother me too much, I don't find they're very itchy. He also told me I can roll over and sleep on my side as long as I keep wearing the hospital bra at night (it's like a sports bra so no biggie). One thing we are monitoring is my upset stomach. At first we thought it was just some rich food we ate, but my stomach has been up and down the past week, so will monitor for recurrence of c-diff. At this point I am taking my granules again 2x/day to see if that gets me back normal before we pursue other measures. Otherwise everything is healing well, I'm feeling good, and on the track to recovery. I am now clear to start radiation. Based on our last meeting with Dr McGrath (radiation oncologist) that will be somewhere 4-6 weeks post-op. Will also start oral chemo pill Xeloda at that time.
Next I met with Dr Gadd and one of her assistants in surgical oncology. We reviewed the surgical path report in detail. For a mastectomy they look at anterior (forward) margins and posterior (back) margins. For the left side it was <0.1cm clear anterior. This is less than MGH standards for 0.2cm however Dr Gadd wasn't concerned given the tissue is removed, it's fairly porous, then dipped in ink, so <0.1cm is a fairly gross measurement. At other hospitals this is acceptable. She also removed all the tissue so there was nothing left to take. The potential of any residual will be sterilized in radiation. It was a similar story for the posterior against the chest wall. Here the margins were 0.2cm or greater, which meets MGH standards. All the tissue was removed. There's also a membrane between the tissue and the pectoral muscle which was removed and did not show any signs of tumor penetration. Again, while the chances are low, any residual cells will be sterilized by radiation. Overall the path report showed at least 50 foci of live cancer cells in the removed tissue, the largest at 0.9cm, spanning 7.5cm across the upper central/outer, so a mastectomy was the appropriate surgery. The right side showed no evidence of malignancy.
Everyone's body and cancer is different. When I originally met with the team at MGH, and the second opinion at Dana Farber, both hospitals recommended chemo prior to surgery. Based on how my body responded to the chemo (swiss cheese) it really didn't make a difference doing chemo first. Some women have a complete response, meaning chemo kills all the tumor, and they can do the lumpectomy and save their breasts. That wasn't in the cards for me. But looking back on it not sure I would do much different other than skip the lumpectomy and extra surgery. AC chemo has been the hardest on me so far, glad I got through that when I was at my strongest.
At this point I need to continue to take it easy for another 2-4 weeks so I can fully heal and put my body in the best position to handle radiation. Radiation will administer a lifetimes worth of radiation to that portion of my skin over 6.5 weeks. My skin will harden, will grow a sizeable sunburn, and will weaken my immune system and increase my fatigue. Hopefully the 6.5 weeks will go by quickly and I can finish before Christmas and New Years. Dr Gadd's team recommended I don't travel for 1-2 months after radiation so I can build back up my immune system. We did talk about lymphadema when I travel, but it is unlikely. If I start feeling tightness of my jewelry or sleeves on my left arm it may be a sign. It's not life threatening but would warrant a follow up with Dr Gadd's team when I returned. It's also not recommended I spend any time in a hot tub until things have had more time to heal. The biggest long term concern is infection to my left arm. Given I will have some level of permanent numbness in my underarm area where the lymph nodes were removed I won't have the normal sensation of an infection. For me now, signs would be more systemic like fever or aches, and maybe some redness in the infected area. Will have to watch for insect bites, cat scratches, etc and how my body responds.
I'm enjoying my free month off work and making the best of it while still resting. I still haven't been able to sleep through the night since surgery so feeling a bit tired. Not sure if that's because I've been confined to my back or the itchiness from the antibiotic that's going away, or both. Doesn't seem to change if I nap or not so I'm trying to nap more. It's also been nice to catch up on my house projects, but definitely couldn't make it as a stay at home mom!
Next I met with Dr Gadd and one of her assistants in surgical oncology. We reviewed the surgical path report in detail. For a mastectomy they look at anterior (forward) margins and posterior (back) margins. For the left side it was <0.1cm clear anterior. This is less than MGH standards for 0.2cm however Dr Gadd wasn't concerned given the tissue is removed, it's fairly porous, then dipped in ink, so <0.1cm is a fairly gross measurement. At other hospitals this is acceptable. She also removed all the tissue so there was nothing left to take. The potential of any residual will be sterilized in radiation. It was a similar story for the posterior against the chest wall. Here the margins were 0.2cm or greater, which meets MGH standards. All the tissue was removed. There's also a membrane between the tissue and the pectoral muscle which was removed and did not show any signs of tumor penetration. Again, while the chances are low, any residual cells will be sterilized by radiation. Overall the path report showed at least 50 foci of live cancer cells in the removed tissue, the largest at 0.9cm, spanning 7.5cm across the upper central/outer, so a mastectomy was the appropriate surgery. The right side showed no evidence of malignancy.
Everyone's body and cancer is different. When I originally met with the team at MGH, and the second opinion at Dana Farber, both hospitals recommended chemo prior to surgery. Based on how my body responded to the chemo (swiss cheese) it really didn't make a difference doing chemo first. Some women have a complete response, meaning chemo kills all the tumor, and they can do the lumpectomy and save their breasts. That wasn't in the cards for me. But looking back on it not sure I would do much different other than skip the lumpectomy and extra surgery. AC chemo has been the hardest on me so far, glad I got through that when I was at my strongest.
At this point I need to continue to take it easy for another 2-4 weeks so I can fully heal and put my body in the best position to handle radiation. Radiation will administer a lifetimes worth of radiation to that portion of my skin over 6.5 weeks. My skin will harden, will grow a sizeable sunburn, and will weaken my immune system and increase my fatigue. Hopefully the 6.5 weeks will go by quickly and I can finish before Christmas and New Years. Dr Gadd's team recommended I don't travel for 1-2 months after radiation so I can build back up my immune system. We did talk about lymphadema when I travel, but it is unlikely. If I start feeling tightness of my jewelry or sleeves on my left arm it may be a sign. It's not life threatening but would warrant a follow up with Dr Gadd's team when I returned. It's also not recommended I spend any time in a hot tub until things have had more time to heal. The biggest long term concern is infection to my left arm. Given I will have some level of permanent numbness in my underarm area where the lymph nodes were removed I won't have the normal sensation of an infection. For me now, signs would be more systemic like fever or aches, and maybe some redness in the infected area. Will have to watch for insect bites, cat scratches, etc and how my body responds.
I'm enjoying my free month off work and making the best of it while still resting. I still haven't been able to sleep through the night since surgery so feeling a bit tired. Not sure if that's because I've been confined to my back or the itchiness from the antibiotic that's going away, or both. Doesn't seem to change if I nap or not so I'm trying to nap more. It's also been nice to catch up on my house projects, but definitely couldn't make it as a stay at home mom!
Getting into the Halloween spirit with snapchat
Wednesday, October 12, 2016
Cancer Free!
Got a voicemail from my surgeon saying the path report came back and my margins are clear - I am now cancer free! Holy cow, how long I have been waiting for this day! She left the message last week, but it was only tonight that we got a chance to discuss it and she confirmed it was clear all around. She confirmed the mastectomy was the right choice for surgery as tumor cells were spread throughout the tissue and another lumpectomy would have been unsuccessful. She also confirmed the right side was clear, no tumors. Even with that information I'm comfortable with my choice, no second guessing and no waiting for it to reoccur. I mentioned to her the itchiness I have at night that's making it difficult to sleep. She thinks that's a side effect of the antibiotic that I just finished, and to take a Benadryl until it clears. Also talked to her about the area with pinching after I had reached for a wash cloth, she thinks that will clear in the coming weeks as the site heals if not then by PT. Dr Gadd asked that I stop by to see her when I'm finished with Dr Winograd at my follow up next week. She also recommended I ask him about starting radiation in 3 weeks (6 weeks post op) to get started on that phase of treatment.
I thanked her, on behalf of me and my family, for taking good care of me in surgery and seeing to it that all the cancer was removed. Here's hoping I'm on the downhill stretch!
I thanked her, on behalf of me and my family, for taking good care of me in surgery and seeing to it that all the cancer was removed. Here's hoping I'm on the downhill stretch!
Tuesday, October 4, 2016
4 Days Post-Op - Healing
The last couple days have been a bit of a rollercoaster. Got home from the hospital Saturday, felt great Saturday and Sunday. Monday I weened myself off the Oxycodone and was miserable. Had a headache, achy, woozy, and no strength. Almost felt like coming down with the flu but with no fever. Had no visible sign of infection around my bandages. After talking with ladies on my BC blog and my nurse neighbor went back on the Oxycodone which gave me relief. I slept well last night, only waking for ~1 hr, and slept in until 9:30am (~10 hrs total, felt great). Looks like I'm not quite ready to ween off the meds yet. Today I got Mom and Gary out for a couple laps around the cul-de-sac and my nurse neighbor came by for visit. My neighbors are planning a couple nights of meals this weekend, very sweet of them!
This evening I developed a low grade fever at 99.6 deg. This isn't high enough to warrant an ER visit (would have to be 100.5 deg), so will continue to monitor this and hope it's just how my body is healing. The feeling of pressure on my chest has turned to a feeling of rocks under my bra. Not pleasant. To help with some of the discomfort we took out the large gauze rolls from under my arms. Big relief! If I sleep well again tonight I will try for a shower tomorrow. The drains are starting to subside, now down to 35-45 mL per day each. Once they get down to 20-30 mL for two days in a row I can have them removed. May get there by Friday or Monday next week. Having the drains out will help alleviate some of the feeling of "rocks" in my chest as well.
Hurricane Matthew is making his way through the Caribbean and is expected to hit the northeast by Saturday or Sunday. I'm going to try to convince Gary to go leaf peeping Thursday or Friday if I'm feeling up to it. Missed the foliage big time living in Texas all those years. I figure if I can lay in bed watching TV, I should be able to sit in a car and look at leaves!
Speaking of laying in bed, there are way too many choices on TV to watch. Tried Dancing with the Stars tonight but couldn't follow it, too much back and forth in time. Watched some of the Voice but was too much bickering. Tonight is the VP debate and AL wild card game, think I'll be watching the latter. This is also the week Tom Brady returns to the Patriots after the "deflate-gate" soap opera created by the NFL. Also started Orange is the new Black netflix series, will see if I can get into that. And of course Lucifer is back and the Ranch starts Oct 7th. Looks like I'll have some good TV to watch and get me through my 4-6 weeks of leave!
Still waiting on the surgical pathology report, should only be another 3-6 days!
This evening I developed a low grade fever at 99.6 deg. This isn't high enough to warrant an ER visit (would have to be 100.5 deg), so will continue to monitor this and hope it's just how my body is healing. The feeling of pressure on my chest has turned to a feeling of rocks under my bra. Not pleasant. To help with some of the discomfort we took out the large gauze rolls from under my arms. Big relief! If I sleep well again tonight I will try for a shower tomorrow. The drains are starting to subside, now down to 35-45 mL per day each. Once they get down to 20-30 mL for two days in a row I can have them removed. May get there by Friday or Monday next week. Having the drains out will help alleviate some of the feeling of "rocks" in my chest as well.
Hurricane Matthew is making his way through the Caribbean and is expected to hit the northeast by Saturday or Sunday. I'm going to try to convince Gary to go leaf peeping Thursday or Friday if I'm feeling up to it. Missed the foliage big time living in Texas all those years. I figure if I can lay in bed watching TV, I should be able to sit in a car and look at leaves!
Speaking of laying in bed, there are way too many choices on TV to watch. Tried Dancing with the Stars tonight but couldn't follow it, too much back and forth in time. Watched some of the Voice but was too much bickering. Tonight is the VP debate and AL wild card game, think I'll be watching the latter. This is also the week Tom Brady returns to the Patriots after the "deflate-gate" soap opera created by the NFL. Also started Orange is the new Black netflix series, will see if I can get into that. And of course Lucifer is back and the Ranch starts Oct 7th. Looks like I'll have some good TV to watch and get me through my 4-6 weeks of leave!
Still waiting on the surgical pathology report, should only be another 3-6 days!
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