I’m feeling a lot better today

Yesterday was the best day this week, until today. I woke feeling pretty refreshed. I’m eating every 2-3 hours to feel best and I did yoga for the 5th consecutive day. My only complaint, aside from a little tiredness, is that I probably overdid it with the yoga today because it felt good while I was doing it, but my body is aching! Hopefully after a good night’s sleep my muscles will feel more refreshed too.

I also figured out how to drink more water… drink bottled water. I tried some while out today and it was delicious. I’m almost up to a gallon of water consumed today and it’s been almost all bottled water. I have a filter for our water dispenser in the refrigerator, and it was replaced not long ago, but my taste buds are altered and I just can’t drink it. Bottled water, on the other hand, tastes almost sweet to me and I can drink it with ease. I will be going to the grocery store and filling jugs with spring water for the next several months. It’s not the idea situation for the environment, but it’s the best situation for me right now.

But something I wanted to talk about are support groups. I think I mentioned last week that I joined a facebook group for people with inflammatory breast cancer. It is actually a great source of information, but I have to be in the right frame of mind otherwise I get down.

Sometimes when I go on there, I hear some horrible stories, either with the person’s family life situation or else with their cancer prognosis, or worse yet, that someone has died. I have to limit my time there. Other times though, like last night, I feel better with what I read. I actually participated in a roll call on the group and felt so much better. They asked for people to give something positive that had happened for them. I actually participated, which is not my usual M.O., and told about how my breast has noticeably shrunk in size since starting chemotherapy. I got a few like and congratulatory remarks made, but I also had someone else who said the same thing happened to her, and that when they analyzed her breast after the mastectomy there was NO CANCER FOUND. I really hope that happens for me too and I felt so much better after reading that. Something uplifting.

I’m thinking of going the “real life” support group at Duke. It meets on Wednesday afternoon, I need to find the paper to see what time and where, but I thought it might be nice to chat with people about some of the challenges we are going through. I don’t want to get really down about things, but it might be nice to have someone mention something and me realize that I’m not the only one feeling that way… or not. I don’t know.

I also wanted to thank everyone who has sent me a letter or card. It really brightens my day to get “real mail” and it be someone giving me inspiration and love. So thank you all! I love you all!

Chemo is no joke…

I’ve said and texted this to numerous people this past week but it still sticks in my throat when people ask how things are going. I didn’t expect it to be easy, but I had no idea the amount of extreme fatigue I would feel. Also, not being able to tell if my body is feeling nausea or just hunger… makes it hard to decide to eat or not.

 

So, my first chemo was one week ago today. I got plenty of pre-medications in the clinic before my infusions began and it definitely kept the nausea at bay for a while. Jim and I even went and got his head shaved after chemo! But, sometime before dinner I started to get a fuzzy head feeling. I was hungry, so I started to eat some dinner, with plans to go to bed early. I barely got 3 spoons of chili in my mouth before I started to feel sick. It was then I realized, the fuzzy head was a precursor to nausea for me. So I took Compazine & Ativan (first time taking Ativan aside from immediately prior to chemo) and hit the sack.

 

I slept fantastic and woke up feeling decent. The first three days after chemo, I had scheduled doses of Zofran and dexamethasone and they helped me feel pretty good. I still got a fuzzy head somewhere around 2pm, so I took Compazine & Ativan and went to bed for a couple hours, and then did the same before bed, but I was functioning pretty well over the weekend. Then Monday hit…

 

Monday was the first day without scheduled meds. I still took Zofran because I thought I had a little nausea, but not too bad. It was also the day I took care of Finn all by myself because my mom had to go out for a few hours. I don’t know if I overdid it, or it was just due to the lack of steroids in my system, but I got exhausted by noon. And Tuesday was worse than Monday… I just could barely do anything. I wanted to be with Finn and the puppies, and my mom of course, but I just could not keep my eyes open but also couldn’t sleep well either. I was taking some PRN meds but not all that I had been taking.
Yesterday, Wednesday, was actually pretty rough for the first half, but I think it’s when I realized what my actual needs were. I think, in addition to the extreme fatigue, I had still been having some underlying nausea that I just couldn’t decide if it was nausea or hunger. I took Zofran in the morning, fell asleep for an hour, but felt a bit better. Then I went to the grocery store, which wiped me out, and honestly I was so disoriented in the store that I couldn’t find much without asking,

but after taking Compazine & Ativan again, even though I didn’t sleep I felt better. I actually cooked dinner, just rice and veggies, but I felt more clear headed.

 

Today, I actually feel clear headed without the aid of any pharmaceuticals. It is a wonderful feeling. I am working on the energy thing, but that’s a slow process.

 

I had lost about 5 pounds from last Thursday to Monday but I’ve gained back a pound, so I’m only 4 pounds down. I’m not horrified by weight loss, since I am overweight, but I just didn’t want to lose so much weight so quickly. Now, I’m eating about 4-6 small meals a day and when in doubt I eat. If I am having nausea, it is usually effective at taking it away, at least until the meds can kick in.

To aid with the fatigue, in addition to getting as much rest as possible, I’ve started doing yoga. I wish I had started it Friday but I didn’t do it until Monday. I’m convinced that the yoga, even when it was a struggle on Tuesday, has helped with the fatigue. There are studies that show that doing yoga decreases fatigue but up to 50%. I am not doing anything intense, just some gentle stretches and deep breathing, but I do feel better at the end of the routine.

 

I’m hoping that my increased appetite continues and that I feel pretty good for the next week, because it’s all going to start over again next Thursday with round 2.

 

Other tidbits… my hair loss started about 2 days after chemo, not the two weeks I was told, thankfully I have a ton of hair still so it’s probably going to take a while to lose it all, but we shall see.  When in doubt, take nausea meds and take a nap. Don’t stop eating…

My first chemo day!

Jim and I were prepared for chemo to start on Thursday, when we went there for labwork and a oncologist visit, but were still not certain it was going to happen. I knew that my doctor wanted all the tests done as soon as possible and was planning on talking with me about when to start (with plans to start in the very near future).

 

When I met with the pharmacist, last Friday, she also commented that I had the standard schedule in the computer: labs with port nurse, visit with oncologist, but then no scheduled chemotherapy. She told me she would check in with the doctor to see the plan, but that it was possible they were just waiting on the last few scans. I told her, when talking with the oncologist, that my preferred day for chemo would be Thursday so I will be prepared to start this week.

 

The nice thing about MyChart, whichever health system you use, is that it gives you access to your scans and labs, a lot of the time before you have spoken to the doctor. The thing was that my bone scan had not resulted so I was nervous that it wasn’t back and that I wouldn’t be able to get my staging and start chemotherapy today.

 

See, the rash that has been on my breast looked like it was spreading around my side to my back, not a large rash yet, but it was giving me some concern. I hadn’t seen it because that area was covered by the bandaging from my lymph node biopsy.

 

When the port nurse accessed my power port for the first time it was more painful than I hoped but once it was done, it was fine. She left it accessed, in case I get chemo, and told me to come back to the lab to get it de-accessed before heading home.

 

So, after a brief wait, we saw my oncologist, Dr Westbrook, who went over my scan results. I have lymph nodes under my armpit as well as intramammary lymph nodes under my breast tissue (not as good) but nothing else in my abdomen and pelvis. Woot!Woot! Bone scan results show all degenerative changes. There was only one spot on my spine that shined a little brighter, and the radiologist still highly suspects that it is degenerative joint changes but wants a follow up bone scan after chemotherapy completion to see that nothing changed.

 

With all that being said, I have gone from stage 3B to stage 3C but there is no change in what they do to treat me, with the exception of the radiation oncologist taking into consideration the intrammary lymph nodes when she calculates my radiation therapy.

 

 

So then it was time for chemotherapy. I was an add-on for yesterday so I had to wait a little bit for a slot to open up, but the rest of my sessions are scheduled and I’ll have a better plan.

 

I started knitting the ribbing on my sweater in the beautiful waiting room and continued it a couple rows when chemo was infusing, but then I started to think about what short haircuts I’m going to get, either today or tomorrow, and wasted time looking on the internet.

 

The actual infusion wasn’t too bad. I didn’t feel anything with the docorubicin injections, though my urine was red by the time I was ready to leave the infusion center. The cyclosphosphamide was a different story. It wasn’t painful or uncomfortable, but I definitely felt a warm “wasabi” feel around my nose, head, etc.

 

I actually felt well enough for Jim to stop and pick up a notebook at Barnes & Noble after leaving the cancer center. There happened to be a great clips, so he got his head shaved yesterday, instead of waiting for my hair to fall out. We’re going to do this in stages, to try and not traumatize Finn too much. I might get my hair cut today! And then Finn is going to get his FIRST hair cut tomorrow, I’m hoping for no tears, but fully expect there to be a bit of a meltdown.

 

I’m thankful I ate a big sandwich before getting chemo yesterday, because I wasn’t really able to eat much after it. I did eat a rice krispy treat from Barnes & Noble, but I really want to eat more nourishing meals. I only could eat a couple spoons of my leftover chili and then I just needed to go to bed.

 

I have my scheduled meds starting this morning, dexamethasone and Zofran, and have Ativan and Compazine for PRN use if I feel nauseas. They came in handy last night and helped me to get a great sleep. Historically, I tend to have trouble sleeping when taking steroids, so I may need the Ativan just to be able to sleep. We shall see.

 

So, today I go back to the cancer center to get my shot of Neulasta to help keep my white blood cells from dropping too much!

 

 

 

Test, test and then we wait…

I meant to update the blog this weekend but time slipped by. Anyway, I have more information to share now than I would have had this weekend.

First of all, I’m way less tired than I have been, and it’s mainly due to Jim and my mom taking over the night shift duties with Finn. I have slept 6+ hours consecutive and I feel way so much better!

Last week was tiring with the appointments. I think I left off with a plan for the week and the knowledge that my breast cancer is going to be treated as inflammatory breast cancer. This is an aggressive type of cancer and involves pretty potent chemotherapy, followed by surgery and radiation, and then endocrine therapy (since my cancer is sensitive to estrogen & progesterone). I didn’t have anything scheduled for Tuesday, which was great, so my mom, dad, and I hung out with Finn and dad and I got massages!

On Wednesday, I spent the afternoon at Duke with my mom, dad, and sister. You see, my mom had an aortic dissection back in October and she has made it through the rough period. Her doctors down in SC didn’t have a lot of good information to share with her and her new primary care physician recommended that she see the team at Duke. We spent a lot of time there, but at the end of the day, my mom got a good report. She had a lot of her restrictions removed from her and that’s a blessing because that means she can lift Finn. Since I can’t, I’m glad someone can lift him when Jim is at work.

I only had one activity scheduled for Thursday; insertion of my port-o-cath. I don’t know what I was expecting, but the resulting pain was way more than I expected. My sister took me to the hospital and hung out with me while I got my IV put in and waited for anesthesia to come get me. The procedure went well, I got 200 mcg fentanyl, 3 mg midazolam and 4 mg ondansetron, and I didn’t have any nausea. I had given up breastfeeding Finn the day before, so I was able to enjoy the peanut butter crackers they offered me in the recovery room. I didn’t have much pain in recovery but what a sensation to have a tube going into your jugular vein, let alone a plastic-type device in your chest. I’m finally getting used to it, but I think it’s going to take a while for me to not notice it.

Friday, on the other hand, was packed with appointments. First, I had to get an echo of my heart. I apparently got a newer ultrasound technician, so after he scanned me, his preceptor came in and reviewed the pictures and then did the scan again himself. My sister was getting worried about how long I was back there, but it all worked out and my ejection fraction is great! Then I had to get an ultrasound of my lymph nodes in the right axilla. Multiple physicians palpated and said they didn’t feel anything, but my oncologist wanted an ultrasound anyway. The radiologist was the same one who found my breast tumors, and at the end of the scan she told me that some of my lymph nodes look not “perfect” and so I need a biopsy of one. We scheduled that for this Monday (yesterday). I had a little bit of a cry after that, because I really wanted NO lymph node involvement, but she explained it could be due to stress, etc. My last stop for Friday was with the Pharmacist! I actually met with the oncology pharmacist for the clinic, as well as a PGY2 pharmacy resident. My med reconciliation was very easy to do… a couple vitamins and a probiotic. Then they want over what my chemotherapy regimen will be. It looks like I’ll be getting every 2 week chemotherapy, only one day a week, though I have to come in the next day to get my Neulasta. The first four rounds of chemotherapy are doxorubicin and cyclophosphamide, the second four rounds are taxol. I will probably start losing my hair about two weeks into therapy. They went over all the premedications and the prescriptions I will be having for the 4 days post chemotherapy at home. I’m going to be on a “highly emetogenic” regimen so I’m prepared to feel like shit for a while, but I can deal with that if it kills the cancer cells. Supposedly, the first couple days after chemo should be ok because I’m on steroids (yay!) but when that stops is when I will feel crummy. The pharmacist told me it should only last a few days and then I will have another few days of feeling good before my next round of chemo, so let’s home that works for me. She also told me that there are studies that doing yoga while undergoing chemotherapy has a 50% reduction in feeling crappy. I had already planned on doing that, I’m starting once I am allowed to have full range of motion again after port placement, and my sister brought up several books she had from her yoga certification course, so I’m prepared!

On Saturday, my mom, sister, and I did a little shopping while Jim spent the morning with Finn. We also checked out a new Vietnamese restaurant for dinner. It was tasty, though not as good as Vietnam Restaurant in Philly, and we had a good time. I also joined a facebook support group for inflammatory breast cancer. I don’t regret joining, especially since I learned of some women who have survived over 20 years, but I definitely had a racing mind all night and I just couldn’t sleep well. After getting up and eating breakfast on Sunday morning, I went back to bed and slept another 3.5-4 hours. It was heavenly. We ended up just totally relaxing on Sunday, my mom even took a 4 hour nap as well.

So, Monday was the day of the biopsy. They were running a little late so I didn’t get taken back until about 11:45 for my 11 appointment. I had a different diagnostic radiologist this time and he did a good job. It required a lot more lidocaine to numb since they went to a deep lymph node (FYI my breast tumors are close to the skin) and they proceeded to take little punches of the lymph node. I agreed to participate in the research study again so they took an extra punch for the study. At the end, he told me that he would call me when the pathology report came back but it would probably be Wednesday afternoon. He told me that it is most likely the same pathology as my breast cancer, to which I replied, “I’m still hoping that it’s just stress!” He then said that it’s a pretty large lymph node, but maybe I have a little subclinical infection that is causing it to be enlarged. I think that’s probably not the case. To be honest, it’s not shocking if I do have a couple lymph nodes that have cancer in them. Most people with this type of cancer have at least a couple lymph nodes with cancer in them. I was just a little sad.

On Monday, I also got a call to tell me that my PET scan was not approved by my insurance company yet. After multiple calls to my oncologist office, the nurse practitioner called me back in the evening to let me know that despite the oncologist petitioning my case for a PET scan my insurance has denied it. So, now I have to get CT scan of my chest, abdomen and pelvis PLUS a bone scan. That’s what I did this morning. There was a bit of a drama before all the scanning got started. I showed up before 8 o’clock, like I was instructed to do last night, and expected that my CT scans were going to take place. Unfortunately, they had not been scheduled because they were ordered so late in the day yesterday. I have to thank the triage nurse and the scheduler for the breast cancer clinic for getting me added on this morning and also getting the bone scan scheduled for today too! The only time I cried was when I was trying to check in for my CT scans, but they couldn’t check me in because they were still scheduling me for the bone scan and the clerk couldn’t access my record in EPIC. To be honest, he wasn’t the friendliest person in the world, but I also hadn’t eaten since 7 pm Monday night and I was stressed about trying to get my scans done ASAP so I can get my final staging and get this chemotherapy party started. I finally just sat down and started to cry. A wonderful radiology technician, Marie, came over to me and gave me some peanut butter crackers, apple juice and  a shoulder squeeze. I started to feel better. When I got taken back to my room to get prepped, she was my technician and proceeded to witness to me and to get me in a much better place, mentally and emotionally. I think I love her.

After my IV got inserted, no one wanted to use my port yet because it’s still healing, the nuclear medicine technician came in an injected me with the technician 99 radioisotope. Jim joked that I’ll develop superhero powers… I hope so!! It wasn’t much longer after that that I got taken back for my CT scan. It was pretty quick. After they did the one without contrast, they infused the IV contrast which gave me a warming sensation that does make you feel like you peed your pants! That scan was pretty quick too and then I was back in my room. Marie had got me an ice pack (since my biopsy site was hurting a lot) and another cup of apple juice. I gave her a big bear hug because she just made my day.

Since I was allowed to eat and drink, and I had about 1.5 hours to kill before getting my bone scan, Jim and I went to the food court to get brunch. Then we walked over to the campus bookstore and I got a book about baby yoga & massage, plus a couple new pens. Then I went and got my bone scan done.

So now, we wait. Thursday I have blood work done before my visit with the oncologist. The pharmacist seemed to think that I might be starting chemotherapy this week, possibly Thursday afternoon, but if not then I’ll definitely be starting next week. We just need to get the staging to see if anything changes. Right now, I’m stage 3 and I hope to stay that way.

Weaning… earlier than hoped

Weaning was not something I thought I would NEED to do any time soon… unfortunately, I needed to start it a couple days ago. I thought I would actually have a couple weeks to do it before starting chemotherapy. I didn’t realize that getting a port inserted would be quite so painful and that I wouldn’t be able to pick up my son for almost two weeks (because he’s well over the 5-10 pounds I’m allowed to lift). Additionally, I was only able to nurse him on my left side, and since the port is on my left side I can’t actually tolerate anyone touching it, let alone resting a big heavy head on it!

 

Despite the weaning happening sooner than I thought it would, we have been doing alright. I couldn’t have done it without the help of my mom and my husband. I usually take care of Finn overnight on my own since Jim has to go to work in the morning, but since I can’t lift him, I can’t take care of him on my own. Mom and Jim have been getting up with him overnight and laying with him to help him sleep. I have actually been getting the best sleep I’ve had since Finn was born… the one good thing from this cancer diagnosis 😉

 

We have switched back to bottles instead of sippy cups and he occasionally plays/sucks on a pacifier which he hasn’t used since he was 9 months old, but he is coping. I know there have been a lot of changes for Finn, and I feel horrible about that, but I’m grateful for the help I’ve received and I hope that we continue to keep moving along. I’d also like to thank my favorite lactation consultant, Mona Liza Hamlin.

 

I’d be remiss in not mentioning my sister, Sara. She has been here for the last few days and in addition to being a fantastic aunt to Finn, she has been a great sister to me. She helped me with my going to the hospital for more tests and procedures. She gave Finn the cuddles that I haven’t been able to to the last few days and I’ll miss her now that she has gone back to SC.

 

My first visit

I went to my first oncologist appointments yesterday. Originally I was scheduled for the medical oncologist at 8am, the surgical oncologist at noon and the radiation oncologist at 2pm. Jim and I got up early (early for me, not him!) and headed out to the hospital, leaving Finn behind at our house with my parents. We were there by 7:45am. The Cancer Center at Duke is quite a beautiful building and is a nice place to visit, if you have to have cancer.

We got called back to see the doctor pretty quickly and didn’t have to wait too long. The slight delay was because she saw that I had a large gap in appointment times and she got the scheduler to change my radiation oncologist appointment to 10am so we could leave earlier. It was a good thought… unfortunately my next appointment didn’t get out until after noon so I was late to my noon appointment. By the time all was said and done, Jim and I left the hospital around 3pm. That’s almost a full days’ work!

I think I have been holding it together pretty well… I have had my brief moments of tears, but then I get positive again. Despite my positive attitude, I was nervous. I knew I had cancer but I still hadn’t heard for sure if I had inflammatory breast cancer. From everything I read on Cancer.gov I had the signs of it but they typically do a skin punch biopsy to confirm it. I really didn’t want inflammatory breast cancer because it is automatically at least stage 3… I learned that this type of breast cancer is a clinical diagnosis and even if my skin biopsy doesn’t indicate it, all other signs indicate that I have inflammatory breast cancer. At least, they can’t feel any abnormal lymph nodes!

We can’t get the final staging until we get a PET scan, which is scheduled for the beginning of next week, but full steam ahead with preparing for chemotherapy. I found out that there are not a lot of options in the treatment of this type of cancer. Standard of care is chemotherapy for 16-18 weeks, about a month to rest and let my white blood cells come back up to normal levels, then surgery (more on that later), then another month or so to let my wounds heal, and then radiation for about 6 weeks. All combined, this is about nine months.  I’d rather be having another baby instead of dealing with this, but that’s not the cards that are dealt to me.

So, for surgery there are really no options with inflammatory breast cancer. I will be having a mastectomy with all lymph nodes removed from under my right arm pit. Because it is inflammatory, they will not do lumpectomy. They also will not do immediate reconstruction. If I choose to do reconstructive surgery that will be something I can pursue after radiation therapy is completed and I am healed. They don’t want anything done, unnecessarily, that could result in delayed healing and subsequent delayed radiation. I actually have decided I don’t want to have reconstructive surgery… I’m going to stay flat. I suppose I could change my mind, but I don’t think that will happen.

I may actually be having a double mastectomy… it all depends on the outcome of my genetic testing. If I have the breast cancer genes, then I’ll be having the second breast removed at the same time as the first one. That is apparently the exception to the rule of having an “unnecessary” procedure before radiation.

 

So what are the plans for this week? I will be having my port put in Thursday morning. On Friday, I have an echo to check my heart, an ultrasound of my lymph nodes under my arm, and a meeting with the pharmacist to go over my medications. I’m pretty sure that I have a good grasp of my medications but I have no problem participating in this aspect of my multidisciplinary team.

Next week, I have the PET scan on Tueday and then on Thursday I have my port accessed for the first time to get more labs and I have a visit with the medical oncologist. We will find out the final staging as well as what is the most appropriate chemotherapy regimen for me. She told me she wanted me to pick out what day of the week I want chemo, so I’ll be figuring that out as well. I’m 99% sure I’ll be starting chemotherapy the week of 3/13… it’s all happening very fast, but I know that’s so I have the best shot of eradicating this cancer.

 

That’s pretty much all I have to say. I have purchased a pretty Kelly green yarn to use for knitting a cardigan. I have had the pattern for a couple years and never got around to knitting it. I figure, I’ll have some time on my hands when I’m getting chemo, and I’m hoping I feel up to knitting away the hours.

 

 

A new journey…

When I first started this blog the plan was to use it to chronicle my vacations. I blogged my way through Ireland, Spain and Morocco. It’s been a few years since I blogged (I skipped blogging my honeymoon road trip a couple years ago) and the time has come to reinstate this blog.

My journey this time is not a geographic one but a physical and emotional one. I was diagnosed with invasive ductal adenocarcinoma about a week ago and in two days I go to my first appointments with a medical oncologist, surgical oncologist and radiation oncologist. I am sure I will need to have additional tests in order to determine my staging and treatment plan. Right now, I’m coping pretty well and I am hopeful that we caught it early.

I will be using this blog to record my experiences and to share with my family and friends.