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.

 

Tarifa to Morocco

So, onward with this blog update. Today is all about Morocco: getting there, touring about and returning.
I woke early (5:30 am!!) so that I could walk over the border to the bus station in la Linea and catch then 7am bus to Tarifa. It is from Tarifa that we board the fast (allegedly) ferry to Tangier, Morocco. Going through customs leaving Gibraltar was even less exciting than entering because it was so early, the customs building wasn’t even open, and as I stood there wondering where to go a Spanish guard called out to me… ‘Senora, Spain is this way’ and pointed the direction I knew already. He didn’t even look at my passport as I walked past.

So, I had a pleasant 1 hour bus ride to Tarifa and walked down to the port. It was brisk and windy and I was glad I brought my light weight cardigan but kind of wished I brought my jacket from San Sebastain as well!!

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I hopped on the ferry, after getting my passport stamped by spanish customs, and sat down at a table. After a bit an American couple joined me and we sat together for most of the trip and chatted. He was originally from Scotland and she was originally from Italy but have lived in NJ for years and we are probably about 1 hour away from each other. Very coincidental 🙂

They were planning on wandering around on their own in the Medina of Tangier while I booked a personal tour of Tangier, the cave of Hercules, and a small town called Asilah. In retrospect, I should have wandered on my own too… I would have seen more of Tangier and developed a sense of the city. But as they say, hind sight is always 20/20.

Most of my initial photos of Tangier are from a car and I do not excel at taking photos from a moving vehicle. There are a couple good ones though,

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A mosque in Tangier…

Then we went to the home of the head of Rolls-Royce in Morocco (supposedly) and I got up close to some…

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The home also had a beautiful entrance to the driveway…

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We worked our way out of the city and down the coast, stopping at a pretty vista with a unique light house.

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Oh, I forgot to say that my personal tour ended up being with 3 other people, all from America, one based out of Philadelphia. This was nice because we all spoke the same language and ended up exchanging email addresses so we could share our photos. One of the pluses to having other people with me is I finally got my second photo of ME on this trip.

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As you can see, it is still a bit windy. There were a bunch of vendors at this site and I ended up bartering for a abalone shell bracelet that is not really unique but I liked it.

From here we worked our way to the cave of Hercules… It was pretty but the side walls were crowded with vendors as you walked down into the cave. But it was worth it because the view was great…

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The water you see in that photo is the Atlantic Ocean. As you can see, it truly was Hercules’ cave because of this…

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But seriously, it is beautiful there…

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We moved on to Asilah after here. What I liked about Asilah was the contrast of traditional Moroccan homes and art with modern murals on the city walls. Plus it also had a great view of the ocean.

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We saw some traditional bread being baked at the communal oven.

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Then, we rode back to Tangier where we got dirham (moroccan currency) at an ATM and were led through the maze that is the medina. I did see a pretty square…

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And ate traditional kebab in a hole-in-the-wall restaurant…

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Eventually we got to a shop where the couple we toured with purchased a handmade rug and I bought some jewelry. Then toured a beautiful hotel where I took lots of beautiful photos but don’t feel like posting. We finally made our way back to the ferry.

The thing with the ferry is this: it is supposed to take 35 minutes to cross from Spain to Morocco but takes more like 45 min or more and it leaves about 30-40 minutes late each way. This is not that crucial unless you hope to get the 8:25 bus from Tarifa to la Linea and the ferry that should have arrived at 7:35pm actually docked at 8:35!! So the next bus (direct) was at 11pm. Luckily I got a 9:45 bus to Algeciras then a 10:30 bus to la Linea and finally crossed the border at 11:15 pm where the Gibraltar security agent waved me through from about 20 feet away and said, ‘you’re alright love’.

The only place available to get anything (especially food) was a 24 hr gas station – so I got a sandwich, juice and about £14 of Cadbury crunchy and McVities DARK CHOXOLATE BISCUITS… This is why you should not shop when hungry or tired… But I will enjoy all of the british delightfulness when I get home!

Finally got back to the hotel just after midnight and crashed. Full English breakfast the next morning and then trudged back over the border to take the bus back to Malaga and them la herradura. Relieved to be back in our little village and not having to travel any more for a while.

Cheers folks!