Treatments 21 through 28 were very long and painful but I made it, I'm done! And just in time for the holidays. The skin under my arm is bright red and peeling, the rest is brown and started peeling too. Can definitely see the outline of the treatment area now. For my last day I took the radiation technicians a grab bag of assorted makeup products as a Christmas present. They gave me a completion certificate and I got to ring the bell "done!". The staff at Emerson Hospital was fantastic throughout this whole process, very welcoming and accommodating. I enjoyed the time with the other patients completing puzzles but by the end I was the only one left. This is also the last day I will take the Xeloda chemo pill until my follow up with Dr Peppercorn in January when I have to increase the dosage. For now I will enjoy the holidays with my family, heal and recover, and get ready for ski season. Gary was sweet, he got me a lotus necklace to mark my completion, a symbol of rebirth.
Here's to putting 2016 in the rear view mirror and moving forward into 2017!
Tuesday, December 20, 2016
Friday, December 9, 2016
7 To Go - The End in Sight?
With work and the holidays the treatments are flying by. I still enjoy my break in the day to go to treatment and back. Each day I work on the puzzle in the waiting room with the other patients. The good news is one of the two ladies I see regularly finished her treatment this week, the other finishes Monday. We were all wondering now what? Wait and see? A lady I met in the look good feel better class just started so I'll have a new buddy working on the puzzle. Gary is even into it too. He comes with me on his off Friday's just to work on the puzzle haha.
I've completed 21 treatments and have 7 to go. Today was the first time I noticed my skin starting to peel and feeling a little sore. Especially under my arm. Will be good to get this over with!
I've had two funny experiences so far during radiation. Once while I'm lying there on the table getting radiation, all of a sudden the fire alarms started going off. I have this huge machine <1 foot from my face blasting me with radiation, am I supposed to leave? The nurses were unfazed, they just kept clicking through it, it was just a fire drill. I thought it was funny they didn't turn the machine off. Another time I was lying there in radiation and I had to sneeze very badly. What do I do? For treatment I have to lie in a specific position and not move. I held my sneeze for 20 very long seconds. The nurses told me next time just sneeze straight up. I think I'll just hold it thank you.
Looks like I've picked up Brady's head cold, hopefully with a little rest this weekend I'll get past this quickly!
I've completed 21 treatments and have 7 to go. Today was the first time I noticed my skin starting to peel and feeling a little sore. Especially under my arm. Will be good to get this over with!
I've had two funny experiences so far during radiation. Once while I'm lying there on the table getting radiation, all of a sudden the fire alarms started going off. I have this huge machine <1 foot from my face blasting me with radiation, am I supposed to leave? The nurses were unfazed, they just kept clicking through it, it was just a fire drill. I thought it was funny they didn't turn the machine off. Another time I was lying there in radiation and I had to sneeze very badly. What do I do? For treatment I have to lie in a specific position and not move. I held my sneeze for 20 very long seconds. The nurses told me next time just sneeze straight up. I think I'll just hold it thank you.
Looks like I've picked up Brady's head cold, hopefully with a little rest this weekend I'll get past this quickly!
Friday, November 18, 2016
1.5 Weeks Into Radiation - 1/3 Way Done
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!
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!
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
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