Back in the Studio

I spent a little time in the studio at the torch last night testing out this new sliced up body to see if I can be comfortable at the torch. And, yes, it is possible. I made some beads that I'm actually happy with. I definately tire more quickly but it was fun to feel myself get back in the creative groove. Tomorrow I've recruited sister Sue to help me with the little Congregational Church Fair that I do every year. I have some jewelry in stock, not a huge amount but respectable. My husband James is going to help set up and break down the display. I'm going to plan on being there and see how it goes. If too tiring I'll leave it in Sue's capable hands. James is happy to see me back on my feet and playing in the studio. I think he needed that to feel like I was truly recuperating. He even kept me company in the studio last night, normally I'm on my own (which can be nice as well.)

Monday I'm planning on going in to work for a few hours. I'm going to take in a new job (the alumni newsletter which follows a preset design so nothing complex) upload a web revision that should have been done before I'd left for the first surgery, and gather equipment needed to set up a mirror workspace at home. For the rest of the week I hope to be in each day for partial days, maybe longer each day until I work back up to full-time. I'm actually excited to get back. It's been a month this week that I've been off sick and I'm sick of it :o) but I'll let my body dictate how much I do and will now over-do it, honest!

I've still been moving slowly at home but am still up and around the house. Hardly laying down and napping at all anymore although you may find me in a state of recline on the couch resting. It's usually around the med-shift-change when I'm waiting for something new to kick in. Not severe pain any more but still heavy discomfort at times. Still changing dressings on one of the chest tube sites. Last time it all healed up so quickly and neatly. This is not so neat but normal (after chatting with the surgeon's office) so I'll continue on until it's all healed up. Nothing that will keep me from work or play!

Tomorrow's the first day of Dec and I never picked up advent calendars for the kids, damn... Whoo Hoo James... you near a pharmacy??? All for now. Enjoy your day! Beth

Quiet Time

Quiet day today with Sander back at school, rainy and dark outside. The heats coming up a bit so the house feels cozy. I did a few things around the house this morning, folding laundry, washing dishes, picking up tables and counters. Broke for lunch of tomato juice, nice chunk of cheddar cheese, and an orange. Sitting for lunch broke my burst of energy so I've been slugging for a bit watching bbc america. Mom popped by for a visit after calling to say she was running to the grocery store. She picked up some perishables (sp?) for me, juice, bread, eggs, etc. as well as some boxes of Edy's frozen fruit bars. I think a strawberry pop is in order then maybe a visit to the studio. I still feel like I'm healing, aches and pains are a bit better every day.

On the medical front a couple of the chest tube sites have opened so I checked in with the thoracic surgeons office. All normal, need to change dressings as needed to keep dry and watch for infection. It helps that I'd been given IV antibiotic before leaving hosp and am on pill form for a couple weeks so as long as I keep it clean should be ok. Always something.... Hope you're all enjoying your day, thanks for checking in. Beth

Another Good Day

Sander kept me company again today with a low running fever. I'm hoping he'll be better by tomorrow, tough to catch up when you miss too many days of school. I'm starting to feel the same way about work. It'll be a month out this week from the day I left for the first surgery. I called to check in and am crossing fingers that I'll be able to go back on Monday with a short day lengthening slowly until I'm back full-time. I was given leave to work on my release paperwork from the hospital but can't drive until I'm off the narcotic meds.

I slept ok last night. Started out on Sanders lower bunk, he'd been in with James my entire stay at the hosp and was nervous sleeping on his own again. I fell asleep and started in on a repeating falling nightmare, dreaming that I'd wake up, get out of the bed, fall down stairs, then be back in the bed again. This cycled 8-10 times to the point that when I actually did wake up I lay in bed for a few minutes afraid to get up. I finally braved the trip downstairs and sat with James until he was ready to go to sleep. I was actually nervous about falling asleep again. I did finallly go back to sleep 4 hrs solid, up for meds, and another 4 hrs solid. Better sleep than in the hosp being woken ever hour or two. And no residents checking on me at 5 AM. Nice.

This AM I watched a Harry Potter movie with Sander then puttered around the house. Mom came over for a visit. I was more comfortable being up and about than sitting with her so continued to putter around her. After Mom left I did feel like I'd over done it so rested on the couch and fell asleep. When I woke up I felt normal and hopped off the couch a bit too quickly, was surprised by the pain. I do still need to move slowly. All-in-all a good day. We enjoyed left overs from gifted dinners for dinner, yummy stuffed shells and chix parm.

Thank you to all for the cards, food, well-wishes, and love. I know I've said this before but this time truly believe that I'm getting better and stronger every day. xox Beth

Home-Sweet-Home v.2

I'm back home again and can't tell you how good it feels. It was an unbelievably long week and I'll be happy if I never have to stay in the hospital again. I've experienced the best and the worst of our health care system. I'm in pain and moving slowly but feel better than any one given day in the past 3 weeks. I'm pumped full of pain drugs, antibiotics, and new blood. My oncologist asked them to give me yet another couple pints while in hosp in prep for chemo. Tests this AM show my crit is now up to 32.5! My pre-Nov 2 surgery high of 38.5, can't ask for more.

I have scars now all over my upper body. The incision for the lung surgery is about 8-10" horizontal accross my mid left back. Three chest tube incisions about 1" ea. A few other little incisions that are from what? Who knows.... Plus the original portacath site, new portacath site, and lumpecomy incision. I'll be on the lookout for an interesting story come bathing suit season...

I'm hanging out with the kids right now in the living room watching Myth Busters. I'm sitting up, cross legged on the couch. Last time I was home from hosp I think I was laying down on this same couch for 2 weeks straight unable to move, breath, live. It feels like this time I might be able to rejoin and participate in our family life even if it is even just hanging out watching the TV. And, now I do feel like I can get myself strong for chemo which has a new start date of Dec 13th.

Thank you all for your thoughts, prayers, positive energy and well-wishes. It's great to be home! Beth

Hip Hip Hooray!

Susie here again, Beth is going home! I just spoke with her, at about noon, and she was waiting for a final boost of antibiotics to flow through the IV before they set her loose. She sounded great and was happy to have a shower at the hospital. Nothing beats that shower fresh feeling after a whole week in a hospital bed. Mom happened to be visiting so will give Beth a ride home where Sander is home sick with James. They can lie on the couch and rest together :-)

One more night...

Susie here again. Looks like they will be keeping Beth in the hospital tonight. They are a tad worried about a fever she's had on and off. They were slightly concerned it could be an infection in the portacath but it's not red and swollen or painful so they doubt that's it. Because the surgery was in the lung area they said it's fairly common to have a fever post-surgery. They gave her an antibiotic this morning to help stiffle anything that might be happening. She is still working through the pain management, had a tough night last night testing out what it would be like to use just the pills and give up on the liquid pain meds. Wasn't good. So she talked with the team this morning and is going to try out a longer lasting pain medicine, something that lasts 12 hours which can be subsidized with other things in between as needed. Hopefully that will allow better sleep through the night and better overlap to keep pain at bay. Thanks as always for your comments and for checking in!

Sunday Update from Susie

Hi all. Beth is doing well today. The epidural was removed this morning and she is now on a combination of regular pain pills spaced out to provide adequate coverage. We hope that she will be ready to go home tomorrow but only if the pain is manageable. I was there visiting earlier today and was happy to witness her last tube being disconnected! So she is currently tube free, finally free of the IV, among all the other things. She was excited to move about freely and is anticipating a visit from the physical therapist to test out stairs etc. So if all goes well tonight she will hopefully be at home in her own bed tomorrow night. Her last blood cell count check was decent, 24, compared to the last time they sent her home from the hospital which was 19. No wonder she was tired. Thanks for checking in, we'll definitely post the happy news when she is released!

Saturday morning

Hi, it's Lisa again, this time writing from Seattle, where I returned late last night. Beth sounds good on the phone. She had a rough night because the epidural machine stopped working and so she experienced the full pain from the surgery area, chest tube, and all. She said it was terrible. After a while an anaesthesiologist came upstairs and gave her a shot of the epidural drug, which provided near-complete relief within a minute. But the machine is working again now. This morning they took out the chest tube. So I think going home is mostly now a matter of figuring out the pain management. Better living through medicine...

Beth is okay this morning

Hi, it's Lisa writing from Massachusetts where I've been visiting for Thanksgiving. Susie and I ended up driving back to the hospital last night when we heard from the recovery room nurse that Beth was looking for Sue. We were very glad we did because, contrary to what we had been told to expect, she was wide awake and experiencing pain. It took a little while but the anaesthesiologist adjusted the dosage in the epidural and she got some relief. We kept her company and fed her ice chips and tried to distract her with a few funny stories.

After she returned to her room around 1:30 am we camped out there and tried to support her as best we could, despite our status as outlaw visitors (visiting hours end at 8 pm). Beth is an amazing advocate for herself--despite her frustration and pain she manages to hold so much information about her situation and share it so clearly and tactfully with her caregivers. It feels challenging that there are always new nurses and other caregivers who don't know Beth's recent medical history, which has to be explained yet again. And recent complications have created a certain amount of mistrust. She managed to sleep from 3:30 to 5:30 am, when someone came in to check on her.

The epidural seems to be managing the pain from the surgery well, and Beth looks pretty good this morning despite it all. She enjoyed a fruit cup for breakfast after four days of clear liquid diet, and yesterday not even that as she waited all day for surgery. Let's all hope her body will heal smoothly from this operation and she'll be able to get the chest drain out on schedule in a couple of days, and return home soon after that. Thank you for your love and support.

Beth is out of surgery

Beth is now out of surgery but as of 8PM would be recovering in the surgical unit for about 3 hours. They hope to move her back to her original room but no guarantee. Her surgeon came out and spoke with us for quite a while. He felt very confident that he removed all of the clots that were causing problems around the lung. He said they will definitely be managing her pain very carefully, she will actually continue to be on an epidural for a few days to be sure she is comfortable during this intense healing stage. He assured us she will get a restful evening and we will be able to see her in the morning. Let's all pray that this is the last invasive procedure Beth will have to endure and that it fixes this problem for good. We hope everyone had a wonderful Thanksgiving and thanks for your positive thoughts, keep 'em coming!

Beth's going into Surgery

It's Thursday at 5pm. Beth is going into Surgery now. The Surgeon is going to clear out the blood clot from the chest cavity. This should take a 2+ hours. We hope Beth will be back in her room tonight.

Waiting for Cat Scan results...

Sister Susie here again. Sorry for the delay in posting some news but not much has been happening since my last post (besides Beth being on a pain roller coaster, very frustrating trying to stay medicated properly). Beth had a bit of a tough night last night in the beginning, was in a lot of pain and it took a while to find the right medication to ease it. Finally she received a double shot of morphine and that helped, she was able to get some sleep. Today started off with a chest xray, more medication, still on the clear liquid diet. There was a large torture session this afternoon when they took her from the room to perform a heart test in preparation for the chemo. Unfortunately this was incredibly painful for her. We don't understand why they had to continue with this test for chemo treatment when they're still trying to solve the current problem and she is so obviously uncomfortable. She had been waiting for a Cat Scan all day today and finally went down for one early this evening (with her friend Loan who happened to be visiting, thanks Loan!) Now she waits for the surgeon to review the Cat Scan results and make a decision if further surgery is necessary. We hope to hear by the morning. Please keep Beth in your thoughts. I'll try to update in the AM when I know more.

Beth's out of surgery

Hi Everyone, Susie again. It's now 1:30PM Tuesday. Beth went into the surgical unit this morning to have a new chest drain inserted. She's been back in her room recovering for a few hours. She is looking good and feeling better, just had some broth and sorbet. Luckily they were able to give a good local anesthesia so she didn't feel much of the procedure. Now they wait and asess again, hoping to get all of the fluid out. There is a slight chance that some clotting may remain but hoping that the drain will clear everything out. If the clots don't leave via the chest drain there is a chance they would need to surgically remove them. Hoping that won't happen. Looks like she'll be here for turkey day, they don't expect to release her until Thursday eve or Friday. Still have a lot to be thankful for. Thanks for checking in!

Mini Update from Susie

I'm sorry if we kept everyone on pins and needles last night, my home internet connection failed me. Beth had a cat scan last night and they weren't going to make any decisions until this morning. It's only 6:30AM so I don't want to call the room quite yet, hopefully she's been able to get some sleep. I'm off to the airport to pick up our Seattle sis, Lisa (hooray! more support for Beth!), she's due to arrive at 7AM. Then we'll head straight to the hospital. We'll try to update the blog today if we can once we get news. Fingers crossed, PLEASE not another chest drain. But whatever it takes to get Beth healthy...

Update from Susie

I'm giving a brief post after speaking with Beth, Linda and Mom at the hospital. Unfortunately the news is not great, it looks like Beth will have to have another chest drain. The xray did not show good enough results and they are concerned about fluid buildup. Huge bummer, poor Beth is just waiting, been waiting all day, for a procedure that she knows first-hand is horribly painful. UGH. I spoke with them at about 4PM and they were waiting to go into a room at UMass Medical (she's now at the UMass teaching hospital, not Memorial). Once they go into a room they'll be getting more info on the timing of the procedure. Tough news for Beth and all of us who love her. Please send her loving thoughts to keep her strong!

Back to Hospital

My son had a playdate with the head group practice as UMass Memorial. My primary care physician is one of his docs. James told him on drop off about my medical issues and he casually checked me out when dropping Sander back off. He's very concerned and urged me to contact my primary care physician for more chest x-rays and bloodwork.... So I contacted my doc this AM who says she actually sees that my most recent chest x-ray looks worse than previous and this was noted by the radiologist who read the film. So why did the thoracic surgeon say it looked fine? She wants me back in for another chest x-ray to compare and more blood work to check that my count is up enough after the transfusion on Friday. I have to go in for tests then stick around until she has time to read them and meet with me. It'll be a few hours at least. I'm going to have James and Sander (they'd planned a guys day off together today) drop me at UMass then hopefully pick me up again after a bit. My worst fear is that they'll want to keep me but I'm trying not to think about it.... I'll have my cell phone although they'll be instances that it may be off. Call if you'd like to check in. xox Beth

Day After

The day after blood transfusion brings renewed energy. My lungs still feel like toast but now that my hearts not racing and I'm not constantly out of breath I'll work with the "Airlife" apparatus to work on lung strength and get rid of the constant feeling that I have to cough.

The blood transfusion went well but it was a full day event. They wanted me to come in as quickly as possible when I got the call. I was ushered in to the back spaces of the oncology clinic where they give chemo. It's a huge block of little individual cubbies with recliners, guest chairs, little tv sets, curtains for privacy, and lot's of light. It was also warmer than the front clinic space but I still think I'll bring my super soft blue blanket from sister Linda to keep me warm during chemo treatment. Wish I'd had it with me yesterday. It took 1.5 hrs for them to match my blood at the blood bank after taking a sample. They used the portacath-from-hell for the first time. Access seemed very easy and after tapping into it and taping access down so it wouldn't shift was quite comfortable. Mom dropped me off, I called Linda for pick-up thinking it would be pretty quick once blood matched but no. Each bag of blood takes 2 hrs to transfuse to 4 hrs total after the 1.5 hr wait. Linda came and kept me company for a while (w/cups of hot choc from Starbucks, yum.) She contacted Mom when leaving, I fell asleep when switch to bag-o'blood-2 and woke up to have Mom sitting nearby reading. Pretty groggy and tired last night but woke up this AM feeling good.

James continues to be stressed by my treatment to date on a number of levels but is trying to hold it together. This weekend he's at Mom's house to finish the paint job for Seattle sister Lisa's visit on Tuesday. Best for him to keep busy I think, then he'll come home to cater to me. Hopefully I'll be able to give a bit back soon...

Sander's cousin Nick is taking him to the Lego Robotics Tournament today. I'm sorry that I'm missing it but didn't want to push myself. We got him up and out of the house at 7 AM. 10 AM now and pre-teen Phoebe is still sound asleep upstairs. I'll be waking her up soon to dig in to a huge school project that we'd lost track of with my many health crisis'. I explained to the teacher how my health issues have disrupted our lives a bit and she was happy to extend the deadline for Phoebe.

Nothing else on my plate (other than getting my lungs up to speed) until a Nuclear Medicine Heart Test on Tues in prep for Chemo the following week. Wish me luck, breathe deep, and enjoy the day. Beth

Transfusion

I'm off to the hospital for a blood transfusion. The med oncologist is worried after reviewing the blood work from yesterday (as am I.) So, she said if I'd like to feel better for the weekend come in to the clinic as quick as I can and they'll match me up for 2 bags. All sounds good to me and thank you again to all the blood donors out there, don't know what I'd do without you. Beth

More Tests, Yummy Food

When it rains it pours and it's been pretty Seattle-rainy here today. Nice day to snuggle down inside which I did for most of the day. My best pal Loan from High School stopped by for lunch today with a bag of declicious soup and salad from Panara Bread and many more bags from Trader Joes with anything I could ever think of wanting, needing, or craving. Sweet, salty, frozen, fresh, it's all here. What a pal! And we had a nice visit on top of it. No muscle spasms today.

I had emailed the nurse practitioner this AM to ask what my blood count was pre-op so I could have something to base these lower counts on. I also asked (per question from sister-Sue) whether family members could donate blood just in case I needed an infusion. Answers were 38.5 pre-op level... scary answer, so hosp-release count was half that. No wonder I'm so damn tired. And, no, they prefer not to have family members donate blood, but, my questions did seem to intiate more dialog between surg-onc and med-onc. They decided to have me venture out in the rain today (thanks to Mom) for more blood. They're going to run a bunch more tests and if the results are in my favor they might be able to juice me up with some kind of super-iron IV. Cross you're fingers that whatever they're looking for is there. I doubt I'll be able to get the count up myself if it's only increased by 2 since release from hosp.

James is home now, kids are settling in to homework, wonderful girl scout family dropped off a full dinner from meat loaf (perfect for my iron count) to delicious pie for dessert. No matter how bad things can get, life can still be good. xox Beth

Mini-mini update....

My blood work is back from pre appointment and still low.... was 19 in hosp now 21. They want it up to 25 by first chemo or might transfuse. Ugh. Recommended diet, red meat, lots of liquids, mini meals many times a day if my appetite is low. Will be working on it as I'd rather not have any more transfusions (although thank you to the kind soul who donated the blood used during the surgery crisis.)

Post-Appointment Update

Just back from meeting with the Medical Oncologist. They've officially labelled me Stage II (T2N1). I start chemo on Nov 28th, every 2 weeks for 16 weeks. First 8 weeks is a mix of 2 chemo drugs, Adriamycin + Cytoxan. Second 8 weeks is Taxol alone. They give me an injection every day after chemo treatment of Neulasta to keep my blood count up. After chemo is complete I move on to Radiation and Hormone Therapy. I have 4 prescriptions for antinausia (sp?) and antianxiety meds and 1 prescription for a wig. Don't know if I'll want it or will wear it but may get it just the same. I do know if I'm going to be hairless December through March I'm going to need some snuggly warm hats. Dan & Sue & Mom, break out those knitting needles and find some oh-so-soft yarns for my naked little head.

During the appointment I asked appropriate questions (thanks for the book MK!) and feel very comfortable with the clinic and the oncologist as does James. I've spoken to quite a few women now who have had the same med onc that I've been given (too many women if you ask me.) She's assistant director of the breast clinic and seems to be a calm, confident person. I asked her opinion on a second opinion saying that it was recommended to me that I request one. She said always happy when people request this. She also noted that in my case, lowest level stage II, the treatment is fairly straight forward. She said she's seen plenty of 2nd opinions from Dana Farber so can tell in advance how they might be consistant or differ. I'll sleep on it but knowing the number of women who have breast cancer currently or had so in the past who have used the same clinic and same doc I feel comfortable moving forward (yet again).

Looks like Thanksgiving may be my last hurrah... Bring on the Turkey. Beth

Today James and I go for the first official appointment with the medical oncologist. I'm hoping to have her help us navigate the most recent path report seen in post below and will be sharing with her my various pains and woes from surgery. I'm hoping that the longer surgery recovery won't interfere with the next steps of cancer treatment (chemo, hormone therapy, radiation, etc.)

I spoke to the thoracic surgeon's office yesterday. They took a look at the chest x-ray from Tues and said that all looks good. I mentioned the muscle pain/spasms and difficulty breathing because of this. They said, well yes, this can happen. We did after all have to go through the muscles and the ribs may have spread a bit. So, I'm to continue on with the breathing exercises and hopefully it'll all go away. This is where the percocet helps.

I tried yesterday, during the day, to stop taking percocet and use only advil. I uncomfortable and so became more tired. Today I'm going to try to split the percocet during the day using a half tab rather than cold turkey of yesterday. It may be a little easier to wean myself off this way. I'll still take a full tablet at night as sleeping is quite uncomfortable/painful at times. I just don't want to be dependent on the pain meds so will keep playing with the dosage and we'll see how it goes....

Mom and I went to Walmart yesterday. I needed a few things and could have called on one of the many people who have offered to help. But, it felt good to get out. I had my list, the trip was very quick and precise. Still exhausting... I'm looking forward to the day when I can hop in the car, do errands, or just do chores around the house without getting so damn tired. I think if I'd have been taking the pain meds it might have been a little easier.

My dear cousin-in-law, Mary Kay, overnighted me a book for the onc appointment yesterday. It has great information and presents good questions at the end of each section. I sped-read it last night and will be re-reading sections this AM. Feel like I'm back in school crunching for an exam although this one is a bit more important.

Last night, when back on pain meds, I drove Sander to his lego robotics meeting. Very close by, quick drive, used James truck as it's an automatic (and was parking my car in.) And it went quite well. The half dosage of percocet (I could be taking 2 tabs) keeps me comfortable without foggin my brain too much. I don't think I was a hazard on the roads... I think Sander enjoyed his Mom giving him the ride. So life continues on in baby steps.

I'll try and update again this afternoon/evening after the medical onc appointment. xoxox Beth

Surgery... Done.

Mom and I went to meet with the surgeon today for follow-up. Everything looks good (to her), yellow, swollen, lately bruising breast (within the last 2 days) all normal. Monstrous blisters from surgical tape around chest tube healing. Muscle pain/spasm on left side normal. I'm exhausted (yet again) from walking around the hospital. I had a chest x-ray after appt with surgeon and will find out if all is ok with that and will have new bloodwork run before meeting with medical oncologist on Wed.

Post-op path report shows one of the 8 lymph nodes removed with micrometastasis (0.1 cm), so small that research has shown that it's not worth worry says surgeon. The mass removed is an "infiltrating ductal carcinoma, moderately differentiated." Tumor size is 2.1 x 1.0 x 1.0 cm. Necrosis is abscent. No lymphatic vessel or venous vessel invasion. In situ carcinoma present. Subtype: ductal carcinoma in situ, solid and comedoe types. Nuclear grade 2. Percent of total invasive tumor volume: 5%. EIC absent. Margins: negative (closest margin 0.3 cm superior). Skin involvement absent. Dermal lymphatic involvement absent. Primary tumor: T2. Regional Lymph nodes: pN1mi. Distant metastasis: MX. Associated findings: Changes consistent with previous biopsy. Fibrocystic change. Don't know if you can make much of the previous. I'll be asking questions about it on Wed with the Med Onc.

Off to nap AGAIN. Man, I'm pooped.... xox Beth

Spasms and Meetings

I had a dear friend, Themia, bring over homemade Spanakopita yesterday for lunch. It's a delicious Greek spinach pie so lot's of iron. My sister was over at the same time delivering some meds (thanks!) and taking the dogs for a walk. It was a nice visit but throughout I was having these weird muscle spasms on my left side. I spoke to the doctor's office and they said, yeah, that can happen. Put warm damp heat on it. Linda and Themia set me up and I settled down for a rather painful looking nap as they left. They're on and off again now. James is thinking they might get better if I'm up and about a bit more so I'll give that a shot today. He has history of back spasms and moving around, although painful, is the only thing that works.

The first round of post surgery appointments has been set up. I see the surgeon on Monday, then a chest x-ray. Still need to schedule with the thoracic surgeon or atleast have him reveiw the x-ray. Then the medical oncologist on Wednesday.

I'm going to try my first cup of coffee this AM after tea-ing it for a week. I still haven't gone back to reading my "Crazy Sexy Cancer Tips" book yet.... feel like I need to read a "Crazy Sexy Surviving a Huge Surgery Glitch Tips" book first. Love to all. Beth

Clear Margins!

I just spoke to my Nurse Practitioner. The margins are clear so I won't have to go back in to surgery to clean anything up. This is fabulous news! I just don't think I could have handled that right now. So continuing to move forward.... after a nap.... Beth

What a difference a day makes...

I was exhausted all day yesterday, breathing was tight, chest was sore. Today, I'm feeling pretty good.

James took the pressure bandage (covering chest tube wound) off last night and I took my first shower although I had to sit through most of it feeling pretty light headed but am now clean. I had a good nights sleep last night only waking up once needing pain meds. I'm feeling like I'm finally recovering from surgery. Then, I'll be able to concentrate on fighting the cancer again. They've scheduled me to see the Medical Oncologist on Nov 14th so must think I'll be ready to move on by then. She's the one I'll discuss chemo and hormone therapy with. I still haven't heard back with lab results on the lumpectomy margins (whether they'd removed enough tissue surrounding the tumor to keep the remaining margins free of cancer.)

I thought I'd give a rundown of what I remember of the surgical events on Friday. If I'd just gone ahead with the lumpectomy and sentinel node biopsy I'd be doing great right now. The nodes were negative, the lumpectomy is healing nicely, the surgeon had moved a bit of fat from my back through the single incision site to fill the void left by the mass which has also helped with healing. I guess that if they don't do this it could fill with fluid which could cause problems.

But, I'd asked about a portacath because I am a "difficult stick" in that when I give blood or need injections they have problems. With chemo looming over me I thought it might be a good idea to do this while I was in surgery. The surgeon agreed saying it's a common procedure with 1% risk of "dropping a lung" but I'd be in the hospital so this could be taken care of. I don't think she was talking about internal bleeding...

James was with me from 7:30 AM arrival at the hospital through 11:30 AM move to surgery. I went under anesthesia, woke in recovery, was told that the surgery went well and the nodes were negative. They were checking my vitals and noticed that I was complaining of pain breathing on the left side. They curtained my space off, called in many more doctors, residents, nurses, etc for consult. X-ray showed that my left lung was fluid filled by half when sitting up and fully when laying down. They moved me to an interventional radiology unit. A new surgeon was called in and after more x-rays, consults, and a stent being inserted up through my it was decided that the first portacath which was placed badly could be safely removed and a new one inserted. From there I was moved to the surgical ICU unit. They watched me, took more x-rays, found that now both seated and laying x-rays showed fluid filled lung. But, they decided that the fluid (blood) wasn't in the lung rather in the space surrounding the lung. It was getting increasingly difficult/more painful to breath on the left side. They made the decision to insert a chest tube for drainage around 11 PM, I'd been out of surgery since about 2:00-2:30 PM. The chest tube insertion was incredibly painful but I felt an immediate release of pressure from around my lung. I was told that I lost about a liter of blood onto the bed and just under another liter of blood went into the vacuum pump attaced to the unit. At some point they gave me blood since I'd lost so much.

James was in the waiting area of the hospital from 11:30 on. When I first came out of surgery he was told that I'd be able to go home from recovery. Then he was updated that I'd be kept overnight, there was a complication. My surgeon called him to say that they may have inadvertently placed the portacath in an artery instead of a vein. Then he heard nothing. He went to see if I'd been moved to the room # he'd been given. He returned to the surgical waiting area. He wasn't allowed to see me and wasn't kept informed about my complications or location. I understand that we are all human and make mistakes but do not understand why they couldn't have allowed him to see me for 5 minutes, keep someone with him, checking in with him, updating him... crazy. He seemed to remain uninformed throughout. He called my sister to take over for him when he thought his anger might interfere and my sister kept him updated from ICU. I'm impressed that he could curb his anger under these circumstances and that he could make the rational decision to remove himself from a volitile situation. He knew that Linda would be a good advocate.

I'll update on the rest of my hospital stay another day, this entry is getting rather long. Although, I do have to say that the ICU staff, and surgical recovery floor staff, nurses, residents, patient care attendents, were all wonderful.

Off to nap... Beth

Update from Phoebe.

Beth's daughter Phoebe, here! Mum's been very tired, so she's a bit too wiped out to update the blog, so I'm going to type for a bit. My grandmother's been coming over and helping out, and I've been getting mum juice and water. We've recieved many generous gifts such as dinner, flowers, and desserts, and we're hoping to send out thank-yous very soon. We've got a fairly busy schedule, and mum can't really get up and drive me to a birthday party, for example. Instead, my dad drives me everywhere and we take the bus to school. We're starting to recover from the damage, but this may take a while. Thanks a bunch, and I hope that this won't totally wipe out mum and the rest of the family!

P.S. Our house is starting to look like a jungle with all of the flowers we've recieved!

Home-Sweet-Home

I'm home, hurrah.

I'll enter more detail of the entire experience when I have more energey but for now just know that I'm home, resting and healing.

James and the kids are great, waiting on me hand and foot. I'm mostly down and out but need to move around a bit and start building my energy level back up. Low blood count doesn't help so need to adjust my diet and take some extra iron. Hopefully that'll make a difference. The meals people have delivered have been great (mostly for the family so far but my appetite should improve with time) thank you!

And, thanks to family for keeping me sane and everyone infomed during this fairly horrific experience.

Off to rest again.
Thanks for all the well wishes.
With love,
Beth

She's Home!

Hooray!! Susie here. Beth's finally home after this long weekend of hospital torture. But seriously, thanks to all the nurses and doctors who were so kind and understanding, especially Kerri in the ICU.

I just sp0ke with Mom who gave Beth a ride home. The kids and James were eagerly awaiting her arrival. She's very tired, of course, and recovering from some Morphine they had to give her today. But such good news that she is at home and able to rest and recover without interuption (hopefully :-) Here's to a very quick recovery, may we all be thinking good thoughts for Beth! We love you Beth! Lot's of hugs and kisses.

Going home

Hi, it's Lisa again, with the news that Beth's dressed and ready to leave the hospital, just waiting for the paperwork. Hooray!

Keep it upbeat

Lisa here again, with a request from Beth that callers and visitors arrive with cheerful and light-hearted news and stories. It's hard for her to receive folks with wrinkled brows and heavy sympathy, or stories about their friends and relatives with cancer. Please do call or visit or send cards, but keep it upbeat and off-topic if you can! Thank you...

Looking good

Hi, it's Lisa again, with happier news from Beth. The morning x-ray looked good and they removed the chest drain. She's mostly tube-free, with just one IV line. Taking a little nap right now and waiting for a 2 pm chest x-ray. If everything is stable at that time, she'll be able to go home. Yippee!

Sunday at the Hospital

Susie here, I just got home from the hospital. I was happy to be with Beth when she got the good news on her 6PM xray report. The doctor said "good news", the air pocket in the lung looks like it's improved slightly. That is their main concern now, this bit of air that's trapped in the chest cavity. In the best case scenario it will absorb into her body and go away but they need to watch it to be sure it's improving. Beth was quite relieved to hear the news, it's been a stressful day imagining the idea of a new chest drain being inserted, awful. So hopefully the morning xray will bring even more improvements, fingers double crossed. Beth's spirits were up when I left, eager to catch some shut eye before the nurses wake her for one thing or another. They are also continuing to watch her blood cell count as it was low today. Hopefully Monday or Tuesday will be the day she can finally go home.

Thanks to everyone for your love and support, it's wonderful.

Sunday update

Hi, it's Lisa again. Just talked with Beth. She's feeling okay and has spent a good deal of today sitting up. Phoebe and Sander came in with James for a visit this morning.

She and Mom are watching the Patriots play and waiting for a 6 pm chest x-ray. Apparently the chest drain has shifted and the docs are trying to figure out whether it can be taken out or if she needs a new one. The fluid seems gone but there is some concern about air in the same space now. Anyway, she's hoping to get home on Monday but it depends on what happens with the drain tonight. Keep holding Beth in your thoughts. She appreciates the support!

Out of ICU

Hi, it's Lisa writing again. Beth continues to improve and has been moved to a regular room at the hospital. I talked with her a moment ago and she sounded like herself. The surgeon said to her today, "You gave us quite a scare last night!" Who was scaring who? Beth said she is feeling wiped out by all the painful procedures, but at least now is able to take the Percoset. James, Mom, and Sue are keeping her company. Still hoping to get the chest drain out soon and be able to go home on Sunday. We love you, Beth!

Saturday morning at the hospital

Hi, this is Lisa with news from Susie at the hospital. Beth is resting in the Surgical Unit ICU after a very difficult day and night. Mom and Sue are with her. It turns out that the porta-cath they inserted during the surgery must have hit an artery instead of a vein. This caused internal bleeding in the cavity between her lungs and ribcage, which created pressure and trouble breathing. The surgeon put a drain into the area between her ribs and lungs late last night, and a lot of fluid drained out -- I think Linda said over a liter. Linda was with her all evening and into the wee hours. Beth has been in a lot of pain and the hospital staff has had trouble keeping her comfortable. They are trying to get her to eat something now so that she can take oral pain medication.

The porta-cath is in the right place now and the x-rays are looking better. They think the internal bleeding has stopped. Hoping the drain will be removed and that she'll be moved to a regular room sometime today. In the best case scenario she will go home on Sunday.

The good news is that the lymph nodes are all clear of the cancer. I know you are all holding Beth in your thoughts and prayers, and she feels your love and support.

More Time in the Hospital

Hi everyone, Susie here again. It's early Saturday morning and I don't have the best of news to share from last night. It looks like Beth will be in the hospital for at least a few days. I'm heading over there now and will try to post an update once I know more. The stint (sp?) that she was having placed for easy access to her blood stream later during chemo had complications. They had warned us that there was a 1% chance of complications and unfortunately Beth is the 1 out of 100. Linda was with her late last night into the wee hours. The surgeon was concerned about Beth's exrays after the surgery, they didn't look quite right. After many hours of checking things out and no one seeing Beth in person, they determined the stint had indeed punctured a lung and Beth had internal bleeding and fluid in her lung. Couldn't sound worse, right? Please send Beth all your love and strength, it sounded like a very painful process. I promise to share more once I visit myself and get more info.

Another Hospital Update

Hi everyone, Susie here again. Linda received a call from James at about 2PM today saying Beth was out of surgery and that she would be able to go home in a few hours. She then heard from him again at about 4PM when the news had changed and she is now being kept overnight at the hospital. We don't know any details and James had not seen her yet at that point. We're guessing that she just needs the extra time to recover from the anesthesia but don't know for sure. Hoping for the best as always, thanks for checking in.

Mini Hospital Update

Beth's sister Sue here, trying to fill in the blog with the latest details. Linda received a call from James today at about 12:15PM. Beth had been in surgery for a half hour although Linda and I were unsure if this meant the initial procedure or the real scary stuff. When we spoke with the NP on Wednesday she described the worst part of the day would start with a series of needles going into the breast without novacaine, sounded pretty awful, right before surgery. She recommended Beth ask the anesthesiologist for a little something to take the edge off. I guess they can give you a pill to help ease the pain. Bring it on! I hope Beth remembered to ask for it, how could you forget. Anyway, I'll try to update the blog as soon as I hear any news. Until then....thinking good thoughts.

Mini Update

I have to be at the hospital at 7:30 AM tomorrow so surgery will hopefully be over and done with early. I don't know how long the pre-op stuff takes. I was getting stressed and anxious at work today so left a bit early, picked the kids up at school, and took them out to buy some new sheets for all our beds. We also stopped by the bookstore. I had all intensions of buying books recommended by my wonderful cousin-in-law but it was a tiny bookstore and didn't have her recommended books in stock. I did however pick up "Crazy Sexy Cancer Tips" by Kris Carr with a foreward by Sheryl Crow. Wish me luck tomorrow AM.... neg nodes.... neg nodes.... neg nodes.... Beth

Surgery Scheduled

It was a long day yesterday. Great to have two of my sisters with me for support. My Seattle sister was with us in spirit. (I'll give you a call today Lisa, hope Kira had fun trick-or-treating.)

We met with the full breast clinic team, the Surgical Oncologist (SO) that I've seen all along, the Medical Oncologist (MO), the Radiation Oncologist (RO), the Nurse Practitioner (NP), and a Psychologist. I've been meeting with the SO all along, but the MO and RO needed to do their own exams and everyone went through my full health history. My sisters loved all the doctors, especially my SO who has squeezed me in to her schedule for surgery on Friday, yes, this is tomorrow. After all the appointments with the surgical staff they had me do blood work, a chest x-ray, and pre-op check-in. It was a very long day but I'm happy that things are moving along. If the surgical appointment hadn't freed up on Friday the SO said that it could have been a months wait. I honestly don't know how I would have survived that. Amazing to think though that I had my first appointment at the Breast Clinic last Wed, diagnosed Thurs, and going in for surgery in just over a week.

It's been decided that the tumor is 1.8 cm in size (good), grade 1 (good), stage 3 (not so good) - edit to say that my wonderful cousin-in-law says that staging is done when the tumor is removed, she thinks this "stage 3" is "Stage 3 DCIS" which I think is correct. I need to refer back to my sister Susan's notes. It is HER2 negative and Hormone receptor positive (both good). The MRI showed that it was only in the one location although we won't know for sure about lymph node involvement until I'm in surgery. They'll do a sentinal node biopsy during surgery, checking the first few lymph nodes which drain from the breast. If those contain cancer cells they'll remove many more and my recovery from surgery will be much more involved.

After surgery they're still saying chemo (3 weeks out) although still not 100% on this. Then after chemo is radiation. I'm happy to do whatever it takes to get rid of the cancer in my body. Bring on the toxins...

I just received an email from my sister Susan with notes from yesterday. She writes so eloquently I'm going to clip some of her information directly below......

Linda and I were so happy we could be there with you yesterday. I was so impressed with all of the people we met with. Everyone really seemed top of their game, I guess that's the benefit of being at a teaching hospital. You definitely remembered the two key terms better than I did (the Estrogen positive and HER2). I hope my notes are a decent reminder of the conversations, I never was a good note taker in school but I did my best.

I thought I would throw out a few more thoughts to keep everyone in the loop on what we discussed yesterday. Linda and I loved the surgeon, a brilliant woman with a great bedside manner. She was a straight talker, really great. And she was able to get Beth in on Friday thankfully because of a cancelled seminar. The whole cancer center team was going in to a long afternoon meeting they have every wednesday to discuss all the new patients and make sure they concur with the course of treatment. It sounded very well thought out, caring, and proactive.

IF the chemo is deemed necessary it would start 3 weeks after the surgery and would happen every 2 weeks after that. The radiation is the final step, I believe, once the chemo is finished. I can't remember how long the chemo takes place, I want to say 6 sessions. Need those notes!

I'm not surprised Beth is tired, this has been such an exhausting process and yesterday was a long day at the hospital. We'll all need to pitch in and figure out when and how we can help and what the best kind of help will be. One homework assignment she was given was to spend 30 minutes EVERY day doing something just for her that she loves and makes her good. Something we should all be doing.

Beth again here. I'll try to list on this blog tonight when surgery is scheduled tomorrow so everyone can send their positive energy. I'm crossing fingers that lymph nodes are NOT involved but if they are we'll deal with it. And, it is getting easier for me to talk about things but I don't want the kids to be living in cancer central so let's talk about other things if you call or stop by. Visit here if you want an update. xox Beth