MyLeftBreast
Thoughts of an outspoken woman on breast cancer (with which she was recently diagnosed)....and maybe anything else she's thinking of!
Sorry for the huge gap. I think I just needed a break from thinking about ME 24/7/365.
I’m in a good place now. I participated in the Post Breast Surgery Support group replete with therapy in the pool for range of motion and strength. I am doing social media for a local farm/agritainment business and am 6 hours out from the 2nd stage in my reconstruction. This time the surgery was only 5 hours. I’m groggy and SORE but doing well.
Speaking of groggy, I think this is going to be a short post.
Until next post,
Jennifer
Well, the queen of side effects has a new one…Radiation Induced Brachial Plexopathy! Approximately half way through my radiation (mid-October) my arms began to go numb from the shoulders on down (much worse on my left side) and at the same time was painful in a ‘pinchy’ sort of way as though someone had tied a tourniquet around my shoulder and was cutting off the blood supply. It’s worse at night.
I finally wrote my physical therapist because I was concerned that this could be a sign of lymphedema (swelling of the arm due to the removal of lymph nodes…You know, you’ve seen those people with giant arms or giant legs, completely out of proportion to the rest of their bodies? Well, that typically means a drainage problem due to lack of lymph nodes. You can lose the use of the limb.) ANYway, she told me to come in to be measured, but suggested I look up the term Brachial Plexopathy to see if the symptoms seemed familiar.
Well, they did! I went in to be measured anyway and was given a clean bill of health with regards to lymphedema, but the PT believed that I could definitely have BP and suggested I speak to my Radiation Oncologist. However, because it was happening to my right arm as well (to a much lesser extent) my Radiation Oncologist felt it might be due to the chemo drug Taxol. But the neuropathy (or numbness) from the chemo had subsided and does not typically ‘come back.’ My Medical Oncologist thought it was Brachial Plexopathy as well and now I am taking an anti-neuropathy medication (which I think is giving me the spins.) OY!
So, I am hoping that the Tamoxifen (a capsule I started taking today and will have to take for at least a year) does NOT give me the typical side effects of hot flashes or weight gain…OR the rarer side effects of clots or uterine cancer!!! The fun never ends, does it?
I know this is probably boring for most of you out there…but there are some fellow cancer fighters that might find it interesting and I just need to VENT. Meanwhile I am healing from the burns…except for one little stubborn spot. And I won’t describe THAT to you! Doesn’t that make you happy?
Jennifer
I am well done! WELL DONE: my last radiation was the day before yesterday! WELL DONE: my left breast, neck and nodes are burnt to a crisp – ouch! WELL DONE: Done, Done, Done with the majority of my treatment. WOO HOOOOOOOOOOO!
I feel like I have graduated and am now the proud possessor of a Masters Degree in Breast Cancer Survival (Jennifer Simon, MBCS). Phase III starts today and consists of: more doctor’s appointments (Medical Oncologist, Breast Surgeon, Radiation Oncologist); screenings (MRI’s, blood tests); years of hormone therapy (Tamoxifen and an Aromatase Inhibitors); and a lifetime of wondering IF. If it will come back. If I will have to go through all of this again. If I will survive.
I feel pretty confident of my chances. The doctors say I have an 80% chance of surviving 5 years…pretty good odds. And if I learned anything during the Avon Walk for Breast Cancer, I learned that there are many women who have survived 2, 3, four and more times and live very full, relatively normal lives. And if they can do it so can I.
The strange thing is – once I get through the onslaught of appointments and screenings this month – that I will have NOTHING to do but take a pill each day. This is in stark contrast to the intensive treatment and healing I have experienced over the last 7 months. I think, in a way, that this might be more mentally and emotionally challenging than what I’ve had to endure physically with the surgery and treatment. We’ll see. I have my Breast Cancer Support Group and there is a Post Breast Surgery Program that I may join. And, of course, the steadfast support of my family and friends. Thank you, thank you, thank you ALL for everything you have done for me from your good thoughts, your prayers and words of encouragement. They have meant the world to me!
Check back periodically. Though I am ‘Well Done’ with the majority of treatment, this journey is not over for me. And I plan on being here for a very very LONG time. Hey, I have two kids to raise! J
Love,
Jennifer
It was a glorious weekend! The weather was perfect and the New York walkers in the Avon Walk for Breast Cancer raised over 8.4 million dollars for research and treatment (especially for those without insurance…which should NOT be necessary in this country!)
I was blessed to be a part of it all along with my sister Emily. I had not been able to train very much because of how chemo made me feel so I was a little nervous about completing the walk. I am a stubborn cuss though, and sheer determination won out. I walked 13 miles the first day and 13 the second (bettering our time on day one!) We camped out in pink tents on Randalls Island, luxuriated in massages, and enjoyed the support of our families.
On the first day, our families waited for us at one of the cheering stations (Lincoln center.) My sister and I were a little ahead of the middle of the pack, keeping up a pretty good pace. However, as the first walkers passed Lincoln Center, Abby — my four year old — burst into tears when she didn’t see me, crying “Mommy isn’t going to win!” Daddy had to explain to her that it wasn’t a race. (Competitive at 4 years old. What does this bode for the future???) By the time we reached the families, Abby had calmed down and she and her brother held up their posters and cheered. Even hubby had made a poster. It made me feel very loved.
In fact, the entire weekend was inspirational and supportive. I have only about a ¼ inch of hair so I am effectively still bald and was the only bald woman walking. The shirts and jackets my sister and I wore bore a logo emblazoned with “Jennifer’s Journey” (the name of the website my sister created for me to help with medical expenses). Looking at the two of us it was pretty obvious who ‘Jennifer’ was and I received a lot of good wishes and support from fellow walkers and complete strangers. Somewhere on the Upper West Side a woman came up to me, asked me if I was Jennifer, told me she was an 11 year survivor, gave me a big hug and told me “You’re going to make it!” Wonderful.
There were so many amazing and touching moments, it’s impossible to mention them all here. The support of my family was so important and the companionship of my sister meant the world to me. Thank you, Emily…I could not have done it without you. This weekend was the culmination of a goal that I had set my sights on six months ago. It was a profound experience and one that Emily and I will repeat. We have already signed up for next year and urge our friends and family to join our team.
Thank you to all of the angels who donated to this cause on my behalf. I can’t tell you what it has meant to me…and to those who will benefit from preventative screenings, treatments and important research to end this dreaded disease. Some day all of our efforts will bear fruit and no woman (or man) will ever have to hear the words “I’m sorry but the pathology came back positive. You have breast cancer.”
XO
Jennifer
I am half-way through radiation and on the cusp of achieving a goal I set for myself on the day I was diagnosed in March of this year…walking in the Avon Walk for Breast Cancer. I had envisioned training more than I have been able to. (Chemo was an even bigger challenge physically than I had imagined.) And I thought I would be through with radiation. (I was delayed by several weeks because of vacations and system upgrades at the Cancer Center.) But I am determined to give it my best shot. And I am excited to be there with my sister and all the other women who have been touched in some way by this disease.
Thank you to all of the angels who have donated to this cause on my behalf. I can’t tell you what it means to me. I’ll let you all know how I did! Be healthy and hug those you love.
Jennifer
I needed that break! I’ve been absent from this blog for about a month…sorry. My last chemo treatment was August 13th and the side-effects lasted longer than ever. (Not only am I bald, but I have no eyebrows or eyelashes, and my nails are pretty funny looking.) Since I was determined we were going on vacation despite a lack of money to do so (we deserved it after this year) I focused totally on that and tried to rest and feel better. So, apologies for the ‘black hole!’
It was bliss to have virtually no doctor’s appointments and to begin to feel like a normal person. I was still very tired with little energy and found out that I was anemic….(that’s getting better.) But I worked out, took the kids to swimming lessons (they did great!) tried to start working on the house (it’s a bit of a mess after months of my neglect.) And I set my sights on our vacation to Cape May which was to have started on August 27th. Yup, August 27th.
Does that date make you sit up and take notice? It’s the day that Irene decided to pay the northeast a visit! As you know the entire Cape May County was evacuated (not my year, huh? Wait, it gets better.) We had booked a rental apartment in a Victorian house and I called the owners and aside from wishing them a safe evacuation, told them that should Cape May be fortunate enough to escape unscathed we still wanted to come and were willing to alter the dates in whatever way would work for both of us. ‘Estelle’ told me that her husband was 80 (so?) and they were leaving and not coming back until next year. (Yeah! WITH my $500 deposit.) They left us completely in the lurch. I began to think “Do I have a target on my back this year?” Oy!
As it turns out Cape May had virtually no damage or flooding…all of it reopened by Monday or Tuesday. We never lost power at home but for some strange reason were without phone, cable or internet for over 24 hours. So, on Monday we packed the family into the car, went to Panera Bread (they have WiFi) ordered coffee and snacks and began to call around to the various hotels and guest houses. By noon we’d booked the 135 year old Chalfonte, went home, packed and left the next day. Whew! We also got our $500 back from the people who should definitely give up being vacation landlords.
Cape May was bliss. Except for checking email a couple of times, we unplugged from the world, swam, collected shells, ate sea food, went on a marsh cruise to bird watch and chilled out! Heaven. No chemo, no doctor’s appointments, no side effects. Normal family life with kids alternately happy and then bickering…delightful and then maddeningly disobedient. I loved it. AND we had the pleasure of a visit from close friends of ours who live south of Philly. The kids played in the sand, we all swam, Clara marveled at my bald head and said ‘ewwww’ and laughed after she touched my chest port and we ended the day at the Ugly Mug for a wonderful meal.
It’s now mid September. School has started L Summer is virtually over…and I’m back in treatment mode. The good news is that my chest port has now been removed (yeah, one less bump and a scar that will eventually heal and disappear.) I’ve been set up for radiation and start it this week. It’s supposed to be much easier than chemo and I am counting on that. I just want to get it over with…I have 28 treatments and November 1 is the end date. I am PRAYING I can get a job after that (one that makes enough money and that I actually enjoy doing? Please? A tall order in this economy…but I have no choice, I must get SOMETHING!) Sigh, to LIVE in Cape May mode would be so nice.
So, here’s the hotel and fundraising pitch. My sister and are doing the Avon Walk for Breast Cancer in NYC. Our families want to come in a support us and also need a place to stay in NYC the nights of October 14 and 15. It would be the two hubbies, Emily’s adult son (21) and three younger ones (9, 5, 4). We could manage a hotel room with two queen sized beds and would bring sleeping bags for the kids and adult nephew.) Conversely an apartment would also work. We are, of course, willing to pay, but the list that Avon put out only includes rooms for $350 and up per night. Just too rich for our blood! Thanks everyone!
*Anyone who wants to support me and my team with a donation to the Avon Walk for Breast Cancer can click on the link below to donate!!
http://walk.avonfoundation.org/site/TR?px=6134886&pg=personal&fr_id=2070&s_src=BF_emailbadge
WOOO HOOOOO! The WHOLE family came for chemo last Friday. And aside from the prospect of about 9 to 10 days of side effects it was almost like a party. Abigail insisted on sitting in my lap in the recliner (which made napping interesting.) Caleb leaned over me playing his DS and giving a blow by blow description of what was happening in his game and I got to choose some ‘bling’ from a foundation called – funny enough – The Bling Foundation.
It was started by a New Providence NJ jeweler whose customer had ovarian cancer and was spending a lot of time in the hospital. She couldn’t wear her usual expensive bling due to the many tests she was undergoing (and fear of theft of loss)…so they overnighted some sterling silver and cubic zirconium piece to her to make her feel better and a foundation was born. They now work with several hospitals to provide cancer and chemo patients with jewelry and my cancer center gives patients their choice of a piece of jewelry when their chemo is done!
We then went out for ice cream – yum – and, later, Richard and I shared a split of champaign (I know…not supposed to drink…but this was a CELEBRATION!)
I’m dealing with pain and neuropathy (numb hands, feet and face) right now…but that should start to back off this coming week and then NO DRUGS, NOTHING until September 14th when I start radiation. I may actually feel normal for a few days…imagine that! Oh and I get my chest port out on September 9th (one less lump, bump to deal with.) YAY!
Then, the very next day, hubby, my sister and I did an eight mile training walk in NYC in preparation for the Avon Walk for Breast Cancer in October. The last couple of miles were killer on the feet so I have my training work cut out for me (and will be walking in radiation induced fatigue (can we say ‘CHALLENGE’?) But we made it…hence the picture at the top of this post.
So, here’s the hotel and fundraising pitch. Since my sister and are doing the Avon Walk for Breast Cancer in NYC. We needed a place to stay the night of the 14th (and found one) and will be tent camping with all the other walkers on the 15th. But our families want to come in a support us and also need a place to stay in NYC the nights of October 14 and 15. It would be the two hubbies, Emily’s adult son (21) and three younger ones (9, 5, 4). We could manage a hotel room with two queen sized beds and would bring sleeping bags for the kids and adult nephew.) Conversely an apartment would also work. We are, of course, willing to pay, but the list that Avon put out only includes rooms for $300 and up per night. Just too rich for our blood! Thanks everyone!
*Anyone who wants to support me and my team with a donation to the Avon Walk for Breast Cancer can click on the link below to donate!!
http://walk.avonfoundation.org/site/TR?px=6134886&pg=personal&fr_id=2070&s_src=BF_emailbadge
Chemo – like life, I guess – is all about battling and balancing. Chemotherapy is helping me to battle breast cancer and hopefully improve my chances of surviving five or more years.
If you’ve been reading my blog, you’ll know that that is an extreme simplification considering the side-effects I’ve been experiencing. (By the way, not all people have it as bad as I have had…some do have it worse. If you are about to go through chemo or are in the middle of it, you need to know that everyone is differing!) In order to help me deal with the side effects, the docs load me with more medicine, the nutritionists with supplements and the chemo nurses with other valuable suggestions. All of these – potentially – though have their own sets of side-effects…hence the balancing act.
ANYWAY….I nearly put off having my last Chemo infusion (which was 8/29) because I was afraid I wouldn’t be able to keep the pain in check without wrecking my stomach and internal organs again. But I am anxious to complete this necessary hell. So I went forward, a week ago Friday and have tried to eat very blandly and take ALL of the various meds at all the right times and on empty or full stomachs where indicated. In a way you have to eat according to the meds rather than when you are hungry. It’s a bit insane. But 10 days out I am not in agony. I’ve only had to take one steroid pill in the past 72 hours and only one Percocet a day!
This weekend though began my true decent into neuropathy (iow numbness.) Chemo has always made me feel a bit fuzzy in the brain…but in addition I was feeling sort of number from head to toe. And now my hands and feet are numb. I’m sure it will get worse with the next infusion this Friday (hope I can still type!) But thankfully….this Friday is MY LAST INFUSION!!!!!!!!!!!
….then it’s Cape May two weeks later (we found a little place – YEAH)…can’t afford it but NEED it. A few weeks off and then radiation. I know radiation can make you very tired and it can potentially undo all the work I’ve done on my reconstruction (remember the necrosis – hardening – of the breast tissue that my physical therapist and I have been combating?) But the overall side-effects are ‘supposed’ to be much less difficult to deal with. I remain hopeful.
Oh, we’re almost done with stage two folks (stage 1 surgery; stage 2 primary treatment; stage three hormonal treatment and final reconstructive surgery)!!
OH OH OH…by the way, my sister and I and our families are looking for a place to stay in NYC the nights of October 14 and 15 for the Avon walk for breast cancer. Emily and I have to be there on the 15th at 5:00 a.m. and there are no trains at that time. So it would mean we would have to drive in a spend on parking for two days ($ ouch!) The families want to come in and support us with posters etc. So we’d all (5 adults and 3 kids 9, 5, 4) would like to stay Friday night the 14th. Then Emily and I will be camping with all of the rest of the walkers on Saturday night so only three adults and three kids would be staying. We could manage a hotel room with two queen sized beds and would bring sleeping bags for the kids and adult nephew.) Conversely an apartment would also work. We are, of course, willing to pay, but the list that Avon put out only includes rooms for $300 and up per night. Just too rich for our blood!
Thanks everyone!
*By the way… anyone who wants to support me and my team with a donation to the Avon Walk for Breast Cancer can click on the link below to donate!!
http://walk.avonfoundation.org/site/TR?px=6134886&pg=personal&fr_id=2070&s_src=BF_emailbadge
Earlier this week my son had a play date with one of his best friends, David. My daughter and I went to pick him up shortly before dinner time. She’s best friends with David’s little sister Sophie, so I let her play while I chatted with mom and dad, Donna and Russell. After about 45 minutes I called the kids to get their shoes on and Russell went back to the kitchen to check on their meal.
Abby still needs help with her sneakers so I squatted down while she stood holding on to my head for balance. I still have no idea what possessed her…but she suddenly grabbed a hold of my wig and whisked it off my head laughing all the time. (Both Donna and Russell know my health situation.)
I couldn’t help but chuckle because, well, frankly, it was pretty funny. But I took one look at David (9), who was standing there with his mouth open looking quite shocked, and realized that he and his sister, in all certainty, didn’t know I was bald. I quickly said, “Oh, honey…it’s all right. I lost my hair because of the medicine I’m taking but it will grow back!” I think his initial reaction was one of disbelief because he thought Abigail had actually ripped the hair off my head and he couldn’t understand why I wasn’t screaming in pain. (I’ve probably scarred him for life, poor kid!)
Sophie (3-1/2), on the other hand, stared at me with an expression on her face that said “Wow…now that was pretty interesting.” So I said to her “It’s fuzzy too. Abby likes to rub my head.”
I had put the wig back on my head almost immediately following the unveiling. But Abigail thought it was so funny that by the time I’d spoken to her friend, she decided that she’d yank it off again (for an even bigger laugh?) I picked her up and laid her immediately in my lap and said, “It was funny the first time, but not again. That’s the last time you pull the wig off my head.” I had visions of this becoming a regular piece of schtick in her arsenal of classic Abby moves….NOT!
At this point, Russell called from the kitchen, “What happened?” and came back into the foyer. I told him what Abby had done…twice. And he said, “Aw, I missed it!” Timing is everything isn’t it? And Abby’s was perfect that day.
Postscript: I saw David today at a birthday party for one of his and Caleb’s mutual friends and he didn’t back away from me in horror, so I guess he either forgot all about it or managed to chalk it up to ‘weird things my parents and their friends do.’ (Still makes me laugh every time I think about what my daughter did.)
*By the way… anyone who wants to support me and my team with a donation to the Avon Walk for Breast Cancer can click on the link below to donate!!
http://walk.avonfoundation.org/site/TR?px=6134886&pg=personal&fr_id=2070&s_src=BF_emailbadge
I can’t believe it’s been 40 posts and almost 4 months since I was diagnosed. In so many ways the world is a different place for me and yet…in others, nothing has changed.
I am – unfortunately – writing from my hospital bed where I’ve been for three days. Fortunately, I am leaving this place tonight!!!!
As you know, I was doing great after my 2nd Taxol infusion (with the help of steroids and percacet as well as the amino acid Glutamine.) I had a decent amount of energy, wasn’t in a lot of pain and had lots and lots of things on my ‘to do list.’ Tuesday night all that changed. By Wednesday my stomach was in excrutiating pain and I couldn’t take a deep breath because of the discomfort it caused. I ended up at the ER at the oncologist’s request, first, to make sure that my spleen wasn’t enlarged, bleeding or throwing clots (a possible reaction to the Neulasta shot that I give myself after every infusion to help my immune system.)
But, after a ct scan, chest x-rays, blood work, urinalysis and – today – an endoscopy…no one really seems to know exactly what caused the pain. They wanted to keep me for observation due to the precarious nature of my immune system (like anyone undergoing chemo). So in between groaning in pain and sleeping from the morphine…I’ve had lots of time to rest, work on the computer and watch TV (do you know there is really VERY LITTLE of any quality on TV??)
I spiked a fever last night and was really suffering. But after they gave me Tylenol it broke and everything, including my stomach, got better. I’ve been diagnosed with gastritis, but that’s not surprising considering all the stomach eroding things I am on. The only doctor that seemed to suggest a possible cause that made sense was Dr. Farber (oncologist) who said that I may have developed a mucosis (sounds really really gross, doesn’t it?) which is an infection of the lining of the stomach which could happen after a chemo infusion because it lowers the immune system and, as I mentioned before, the drugs also wreak havoc with the stomach.
Ah the joys of cancer treatment. Just when you think it’s safe to live a few normal days….
*By the way… anyone who wants to support our team with a donation to the Avon Walk for Breast Cancer can click on the link below to donate!!
http://walk.avonfoundation.org/site/TR?px=6134886&pg=personal&fr_id=2070&s_src=BF_emailbadge
