Recuperating

First, I must say that I forgot that I wrote a blog post about my surgery, so I spent about 10 minutes writing a couple paragraphs before I realized that the story sounded familiar. I checked my blog and sure enough I already wrote about it, so I deleted all that and started over again.

So, let’s see. On Aug 1, I went to my surgeon for my follow up visit. One of my drains had a really low output so that one got pulled. The one from my armpit was not close enough to be able to be pulled though, so it had to stay. My surgical site looked great though, so I was really happy about that.

I also saw my medical oncologist on that day and she is the one who told me about the pathology results from my breast and the lymph nodes. The great news was that there were clean margins on my breast. The not so great news was that there was still a pretty good size tumor that was not killed by the chemo. Also, they removed 13 lymph nodes and 7 of them still had cancer in them. Needless to say, I was really disappointed, however, the good news is that they were removed. To ease both my mind and my oncologist’s mind, she ordered a CT scan to make sure that there wasn’t anything else growing. I don’t know if anyone remembers from a much earlier post, that I also had these internal mammary glands that had cancer in them too. They are located behind my breast bone and were not going to be able to be surgically removed. I got the results late last week and NOTHING shows up on it anymore! I guess the chemo was able to kill the cancer in those internal mammary glands.

So… that was a huge relief. I still have to have radiation – I have my appointment with the radiation oncologist Aug 21 – but it is basically just a mop to kill any microscopic cancer in the area of where my breast used to be and where my lymph nodes were removed.

This past Monday, I went back to see the surgeon and was able to have my second drain removed. I was finally allowed to move my arm above my shoulder! I got my exercise list and started that night. Let me tell you, it hurts! I am getting so much better every day though and my sister taught me some yoga moves that help to loosen me up a bit too. I can’t wait to go to the Dr on Aug 21 to get moving on with the next step.

Thanks for everyone’s prayers and well wishes. Love you guys!

 

I’m officially a uniboober!

Last Thursday I finally had my surgery. I had been anticipating this day since I was diagnosed in February and the time for surgery had arrived. The night before, my mom cooked some of my favorite dinner items and we had a “good riddance” send off dinner. It was not a fond farewell to my breasts, but rather, a “don’t let the door hit you in the backside” event. They served me well, but it was time for at least one of them to go!

Finn slept at my parents’ house Wednesday night, so we didn’t have to wake him really early in the morning to take him there before heading to the hospital. The morning of, I woke way earlier than I needed to, but I wanted to have my one glass of water and I needed it to be drunk 2 hours before my arrival time so 5:15 AM it was! Jim and I headed there are we early as usual. Mom came in her own vehicle and was a bit flustered so she got slightly lost and was later than expected. I still got to see her before I was taken back to get prepped for surgery though.

About an hour before surgery was scheduled to start, I got called back to the pre-op area and had to change, get IV access, EKG, vital signs, etc. After that was all taken care of, Jim and mom came back to keep me company. I just needed to wait for my surgeon to come and mark me with basic notes and lines of where she wanted to make my incisions. Once that was done, anesthesia came in and suggested we say “good night” as they were going to put in my nerve block and then off I go to surgery and general anesthesia.

The nerve block took way longer than expected, apparently. I have absolutely no sense of time once this started. They needed to use an ultrasound to find my vertebrae and that seemed to take quite a while. Then they gave me several injections of numbing medications in my upper back/shoulder area to help decrease pain during and after surgery. I know they put me on oxygen during this time and they also gave me some fentanyl and versed to relax me and take away some pain. I just kept deep breathing the whole time. At the end, the anesthesiologist told me that I was a champ. There really wasn’t too much to do… it didn’t hurt too badly.

At that point, they wheeled me back to the OR. I tried to pray but I think the fentanyl/versed had messed with my head a bit and I couldn’t focus, so I sang a couple lines of a song over and over again because it’s all I could think of. Apparently, when Jim and mom were given the update that I was taken to the OR, it was the time that I was supposed to be coming out of the OR, so it ended up being a very long day.

I woke up in the recovery room around 4 (I think? – mom and Jim, feel free to correct me about the timing). Definitely in pain at this point. I had been intubated and catheterized and felt unlike I had ever felt before. We worked on getting the pain controlled before they took me up to my room for the overnight stay.

The elevator ride really threw me for a loop and I felt like I was going to vomit. Fortunately, that did not happen, because I can’t imagine that would feel good with about an 8-inch incision on my chest wall as well as two drains in my side. As much as I wanted to see Finn, I decided to not have him come back to the room, because not only did I have an IV in my arm, but I had oxygen, EKG leads, catheter in my bladder, and I was afraid vomiting into an expanding blue bag would really throw him over the edge of accepting this version of Mommy.

I got to see my family for a while and then everyone left except Jim. There was only room for one person to stay overnight, or else I think I would have had either my mom or sister spend the night too.

Around midnight, they took out the catheter and then I had to be able to pee certain amounts within certain time frames in order to be able to leave. I met those goals and my incision looked good so I was discharged from the hospital mid morning on Friday, my 40th birthday!

Since then, I have been recuperating. I definitely had pain, more in my armpit from the removal of 1.5 times the size of a baseball amount of lymph nodes, but it gets better each day. I do take my pain meds, but I’m trying to limit the amount of oxycodone because I only get so much and I don’t want to miss it when it’s gone. So, during the day I stick with Tylenol and Motrin. As much as I didn’t want to move my arm, because that hurt, I’ve been forcing myself to use it as normally as possible (within the limits of what I’m allowed to do) and it is getting a lot better and is really just sore now and not painful.

I go back to the doctor next Tuesday, August 1, to get the pathology results from the breast tissue and lymph nodes that were removed. I’m hopeful that there was no cancer identifiable in the tissue and that I can continue moving on to radiation therapy in a month or so.

I’ll be sure to update everyone after I go to the doctor next week. Hope everyone is doing well!

 

It’s been a while…

For some reason, I’ve been having a hard time sitting myself down to write for the blog. Big news items have been posted on Facebook, and I just don’t seem to get past that. However, I want to keep this up… after all, I don’t post everything on Facebook.

The countdown to surgery has begun. I will be having a single mastectomy with complete axillary lymph node dissection (all my lymph nodes in my armpit are going to be removed). This is about a 2.5-hour surgery and I will be spending one night in the hospital, then sent home the next day. Most people I talk to are surprised at how quickly they discharge you from the hospital, but if you think about it, it’s not that invasive a surgery as other types. Basically, they mark your breast, cut off the bulk of it (including skin & nipple), grab all the breast tissue that goes up under the skin towards the clavicle, grab any breast tissue that creeps to the side of you, then stitch you up and then they do the same for the lymph nodes (except there is even less to remove since they only want the nodes).

I’m having a single mastectomy instead of a double mastectomy because the genetic tests results were finally available (long, frustrating story that I won’t go into here) and I do not have any of the known genetic variations for breast cancer or ovarian cancer. That’s a great thing! It doesn’t mean that I still won’t have the left breast removed in the future, in fact, I’m thinking of having it done next spring, but I just won’t have it done now. Basically, my surgeon will not perform the surgery. Because I have inflammatory breast cancer, they won’t perform any “unnecessary” surgery on me because they don’t want to take the chance that my left breast surgical site gets an infection and it prevents me from starting radiation therapy ~4 weeks after surgery. The trimodal therapy I’m receiving (chemotherapy before surgery, surgery, and then radiation therapy) works best when there are no delays. So I can deal with having another surgery at a later date.

Surgery is July 20 and my birthday is July 21. I knew it would be before my birthday and that I would be recovering on that day, so Jim and I went to Asheville, NC for a long weekend getaway and left Finn and the pups are my parents’ house in SC. We had a lovely time, even if I am not up for as much walking on steep hills as I used to be before chemo… I just took breaks, drank plenty of water, and enjoyed the things I did get to see and do. We bought a beautiful painting that we already hung up in our living room and I also bought a couple small paintings to hang in my craft room. I have to get them framed and then they will be joining some paintings and prints I have from an artist I met when I was traveling in Spain who is now my friend, Lauren Sebastian (check out her website! http://www.laurensebastian.com)

Let’s see… what else? I became aware of this organization called Knitted Knockers when I saw a video about it on Facebook. I think that video was filmed in Scotland. I googled it and found a website (www.knittedknockers.org) which turns out to be a US based organization. Initially, I downloaded the free knitting pattern to make my own, however, I have been having difficulty concentrating on some tasks and most knitting patterns fall into that category. I found out that the organization gives away these items and all you have to do is complete a form online with your specifics and the knockers will be sent to you. Today, I received an email from the woman who knitted my knockers. She belongs to Knitted Knockers of NC and she wanted to let me know that she sent my knockers to me in the mail today. I should be receiving them soon. Her email was so full of love and hope that it made me a little emotional. I am so thankful for people like her and organizations like Knitted Knockers.

I wanted to run a breast cancer marathon and found one in sunny Florida next February, and then I decided that since I can’t start to run until mid-August (and I’ll be getting radiation therapy for 6 weeks starting around then) that I probably wouldn’t be able to train enough to actually complete a full marathon, so I registered for the half-marathon instead. I think I can totally do 13.1 miles, especially since I have no shame in run-walking it. In the couple weeks after announcing my intention to run the half-marathon, I have had several family members and friends express interest – or outright commit – to running/walking either a half-marathon or 5K (the Donna Breast Cancer Marathon takes part over 2 days and has a 5K, 10K, half-marathon, and marathon). There were two ways to register – either pay the fee or sign up to fundraise (with the fundraising option you need to raise at least $500 and you have no registration fee). I’m pleased to say that my sister and I have both reached our fundraising goals. I’m happy to exceed my goal though… so if you would like to contribute please let me know and I’ll provide you the link to donate. The money goes to breast cancer research, so the more that goes there, the better! I have a plan to have shirts printed for my supporters who will be in FL, either running or as support people, and will post pics and more details when I have done more research on screen printing companies and availability of shirts that I like/want.

Well, this ended up being a rather long post. But let’s see what else I have to say. My hair has slowly been regrowing (VERY SLOWLY) but you can really start to see it and you can definitely feel it when you rub my head. I can’t wait for it to get longer so that I can see what color it is going to be! I also can’t wait to not have to worry about getting my head sunburnt. I like wearing hats, and always have, but I would like to not be required to wear a hat when I go outside. I had my lab work done last week and my red and white blood cells are going back to normal so that is great. Also, I had a repeat bone scan of my whole body. Before I started chemo, there was a spot on my spine that the doctor didn’t think was cancer but they weren’t 100% sure so I needed to have it checked after chemo finished to make sure that the spot was still there. And the spot is still there… yay! That means I DO NOT have cancer in my spine and I just have arthritis. I never thought I’d be so happy to hear that I have degenerative changes associated with getting older!

I think that’s enough for today. I can’t think of anything more. The house is coming along nicely – still waiting on the fence installation (which will make the dogs and Finn happy – who am I kidding, it will make me happy too!) and then we need to get electric run to the garage so we can use the garage door opener without an extension cord and we can also get a separate freezer to stock up on local produce and freeze for winter. I’m still thinking about the curtain (or lack of curtain) situation in the living room and have pretty much decided that I’m going to make my own because I can’t seem to find a print that I’m in love with. I think I’d have a much better selection if I go to the fabric store, in fact there is a huge home decor fabric store about 20 min from my house, so I might have to do that next week.

Lastly, we will be having friends from up north coming down for a few days to visit us. They will be arriving next Thursday. I feel so lucky to have had friends visit us in May, June and now July. I’m also very thankful for my family who comes to help out very often and who will be here in time for my surgery so that they can be a part of it and they can take turns on who takes care of Finn and who takes care of me 🙂

 

My first hiccup…

I know that over the course of the past few months I’ve felt rather poorly at times, more when I was on the doxorubicin/cyclophosphamide leg of this regimen than the more recent taxol leg. Despite that, I have been fortunate enough to not get sick… until recently.

I had started having a pretty high heart rate, it was 114 bpm last week when I had my last chemotherapy, but I hadn’t drunk a lot of water yet in the day and also, my doctor suspected that I was “third spacing” so I was having some of my fluids leak into my abdomen. That being said, my heart rate had been creeping up for about a week and a half before that day. Over the past weekend, I had the normal really bad aches and pains I’ve been having two days after taxol, so I took my temperature regularly so that I could take tylenol or motrin. On Monday I was still feeling badly so I checked my temperature and took tylenol. I didn’t have a fever however, my temperature was 99.4 which is higher than it has ever been (my temperature tends to be 97-98). This continued the rest of the day but on Tuesday, my temperature was back in the 98.something range until right before I was going to go to bed, then it was 100.

Technically 100 is not a fever, 100.4 is, however, given my heart rate staying around 110-120 bpm and still feeling generally crappy, my oncologist wanted me to go to the emergency room. They were initially thinking I had a pulmonary embolism, but also collected blood cultures to check for infection. I did not have a pulmonary embolism, thankfully, but still got admitted to wait for 24 hr blood culture results. I ended up being in the emergency department for about 20 hours before a room was available and in that time period I was started on IV antibiotics and then stopped. Late Wednesday night I got a “real” fever and that scrapped the plans of leaving in the morning.

On Thursday, the plan was to be discharged Friday morning if no fever, but Thursday afternoon I spiked an even higher fever than the night before. More labs and tests were done and then I was started back on IV antibiotics. Eventually, I stopped getting fevers and was able to sleep. On Friday morning I felt MUCH better.

After getting switched to oral antibiotics Friday morning, I continued to do well. Additionally, my heart rate went down to mid 80s, which makes me feel so much letter since my heart is not pounding in my chest!

I had so much support during this time. My sister and dad came up to see me and they both took great care of Finnegan during this time. We video chatted several times a day and Sara brought Finn and my dad to see me on Thursday and Friday. Either Sara or Jim slept over at the hospital, so I was never on my own there. And I even had a visitor from the animal therapy department… meet Zellie!

zellie

I was a bit upset that I had this bump in the road the week before my very last chemo, but I realize that I was probably still one of the healthiest people on the oncology floor. I was not considered a fall risk and was one of the only patients who was actually allowed to go for walk by themselves, let alone go to the bathroom without needing assistance. I am still blessed that I was mobile, I did not end up having pneumonia, a pulmonary embolism, or an infection in my blood or my port. In the end, I was classified as having a fever of unknown origin. Who knows why it happened but I’m thankful to be home today.

My major concern now is whether or not I’ll be able to have my final chemotherapy session on Thursday. I really do not a delay, but I know my oncologist will make the decision that is the best for me given my recent “fever” scare.

 

Sorry, it’s been so long…

My apologies for taking so long to update the blog. What I can say is this… initially I felt crappy (because I was finishing up the last round of my cyclophosphamide/doxorubicin) and then I felt pretty decent from the taxol.

I am gearing up for my second dose of taxol this Thursday and am ready for it. I feel soooo much better with taxol than I did with the other chemo regimen. The actual infusion is much longer than the first type of chemo. I need several premedications because there is a small but significant risk of hypersensitivity reaction. One of the medications is IV benadryl which I had never had before. I do tend to get drowsy when I take benadryl on any given occasion, but IV benadryl takes drowsiness to a new level. I just couldn’t keep my eyes open and then had a major case of restless legs. Then I was fine for a while, but after they started the infusion I just got really tired and fell asleep for about an hour and a half.

So there is not much to say. The day at the cancer center is longer than it used to be, because the drug takes longer to infuse. I am still a bit tired, but nothing like it used to be. A couple days after the infusion I get pretty intense muscle aches that last a couple days. I can take tylenol or ibuprofen, as long I check my temperature and I don’t have a fever.

My father in law has been here for about a week and a half and that has been enjoyable. My dad came up here too, for about a week. I thoroughly enjoyed being with both of them… and Finn definitely enjoyed it. My friend Michele came to visit for a few days and, oh how I have missed her, we had so much fun and Finn remembered her, even though he hadn’t seen her in almost a year.

We also had settlement on our new house. We haven’t moved in yet, will do that in about another week and a half, but had our POD unit delivered and emptied into the house/garage. We still have to have the house we are currently renting moved to the new house. Once we get ourselves moved in and settled, I’ll take pictures of the new house.

Thank you all for tuning in to see how I’m doing. The countdown is on and I can’t wait to finish chemotherapy. I meet with the surgeon next week to find out the results of my genetic testing, to determine exactly how many breasts are going to be removed, and to schedule my surgery date. I’m not looking forward to surgery, but I would like it to be done. I’m excited to move on to the next stage of my treatment.

Halfway Point (with chemo at least)

Halfway done chemo

This past Thursday I finished my last dose of dd-AC (doxorubicin & cyclophosphamide) and I’m thankful to be done. I get extremely fatigued and have long-lasting nausea from it. I fell off the wagon with my yoga, but I have been trying to fit daily walks into my life. Some days I succeed, some days not so much.

Ironically, and probably because I didn’t sleep well the day before chemo, I felt worse nausea the day of chemo than I did the day after chemo, so far. I’m pretty sure it was all anticipatory and anxiety related. You see, if I didn’t already mention it on the blog, within a few days after my first dose of chemo the redness, rash and swelling noticeable shrank. It just kept getting better and better, until Easter Sunday morning, when I looked at my cancerous breast and saw a rash coming back where it hadn’t been for over a month.

So far, I have no swelling or redness, no fever, but I still have a rash. And it got a little worse yesterday. Again, it’s nowhere near what the rash looked like before but it’s enough that I needed an additional mammogram on Thursday, to check that the tumors weren’t growing – THEY AREN’T, and I need to see my oncologist again Monday (she’ll call me tomorrow or Sunday to let me know when), and I might be starting my next type of chemo THIS Thursday, instead of two weeks from now. It’s all still in the air at this point, but it’ll all work out.

I’m also going through menopause because my chemo is shutting down my ovaries. So that’s fun! I don’t know if having no hair makes it any better or worse. I do know that having no hair makes it difficult to have the ceiling fan on because it blows so much on my ears and they hurt from the wind. This is also contributing to my inability to sleep.

ON THE PLUS SIDE… I’m halfway done chemo. Have I mentioned that?! Even if I start taxol this week, I’m still only getting 4 doses of it (spread out over 8 weeks), and then it just bumps up the arrival of the next stages… surgery and radiation. I meet with the genetic counselor May 3 to find out my BRCA1/2 status to determine bilateral vs. single mastectomy. Also, oophorectomy vs. chemical suppression of my ovaries (assuming this current suppression is only temporary) for my long term meds after radiation.

What else… my cousins from NJ came down for Easter weekend, and though it was a tiring time, it was also a lovely time to visit with them. My mom was still up here, and my dad and sister came up for the day, and I always enjoy seeing them. Jim’s mom came to town last week and I thoroughly enjoy visiting with her. She is doing great taking care of Finn and I’m glad that my mom got to go home to get some much needed, and deserved, rest!

Jim’s dad will be coming to town in a couple weeks and a dear friend from NJ will be coming down for a few days in mid-May. She will be here right around the time that Jim and I have settlement on our new house! It took long enough to find, and we had some heartaches along the way with this crazy housing market, but we found our place and I can’t wait to move in!

On a much lighter note, but still important, I finally found two ways that help me consume lots of water without nausea. I either use these coconut drops that I bought at Hand & Stone Massage OR I add a couple ounces of fresh squeezed orange juice to some ice and water. I’ve been having no trouble drinking 80-100 ounces of water a day again and I’m hopeful that will help flush out my chemo and help with nausea and fatigue.

Also, I got my sister to shave my head entirely when she came up last weekend. The buzz cut I had earlier looked ok until I had a massive drop of about 90% of my remaining hair and I was left with what looked like a very thin version of what Jim calls a “friar tuck” hair style, as well as some failed, single follicle hair plugs on the top of my head. I waited a couple weeks, in the hopes that it would just fall out, but finally gave up, because if my hair isn’t falling out it’s actually growing. I feel so much better with a truly bald head. And it is actually still growing, but at least it will hopefully be uniform. It may still fall out when I start the taxol, but that remains to be seen.

So, sorry for the long delay in posting. I’ve either been tired or haven’t felt like writing. Hopefully that will change once I start the new chemo. I’m also looking forward to seeing if I have more activity and I’ll start doing more physical activity. Thanks for all the thoughts and prayers and cards. I truly appreciate everyone’s love. It’s a beautiful thing.

 

ahh… hair loss

I had been prepared to lose my hair, in fact it had started falling out only a couple days after chemo started, but then it really started. About two days before my second round of chemotherapy, I noticed that my scalp just hurt. Maybe hurt isn’t exactly the right word, but it felt like I had been wearing my hair in a tight ponytail and I had let it out. My scalp just ached.

 

When I met with my oncologist on the day of my second round of chemo, she asked if I had felt my hair release. That’s a good term for it. Yes! That’s what I was feeling. Two weeks is about when the hair seriously starts falling out.

 

My visit went well and I had a couple hours to kill before chemo was scheduled so my mom and I went to the Belk Boutique to look at hats. Just to get ready.

 

I bought a couple snug hats and then we went to the café to get a cup of tea and eat the snacks we brought with us. I tried on both of the hats and then I looked into one of them, for some unknown reason, and saw a ton of this dark hair that was about 3 inches long. I looked at it, and started to question whose hair it was, because it certainly didn’t look like my hair. So, I started to think that the hat had been on display previously on a mannequin with a wig and that’s where the hair was coming from.

 

Even as we walked to the food court, and I ran my fingers through my hair, pulling out large clumps of hair, I thought that surely there must have been a lot of fake hair in the wig because it was mixed in with my hair.

 

It sounds silly now, thinking about it, but I can’t believe how much denial I was in. I knew I was going to lose hair but when it actually started to happen, like seriously fall out, I didn’t believe it. I’m not going to lie… I had a little moment of freaking out, but got over it quickly. It’s just weird.

 

Over the course of the next 24 hours I just kept losing clumps and clumps of hair so on Saturday I went to get my hair shaved (ie. Buzzed with clippers set at #2). I felt like a cross between Sinead O’Connor and GI Jane and I felt prepared to fight. So I’m ready for battle.

17434569_10207011203993144_1187725891052839514_o

 

So now… I am majorly losing my little buzzed hair. I thought the tub was getting clogged with the longer hair, but these little hairs are seriously a drain clogger! I anticipate that I’ll probably be entirely bald within the next week. That’ll be a good thing because then I won’t have to worry about any more shedding.

 

Anyway… enough about hair. I’m feeling OK today. I was feeling less nausea & fatigue with this second round of chemo, until Monday afternoon. Then it all hit like a ton of bricks. Tuesday and Wednesday were really hard for me. I try to eat frequently but still ended up losing 3 pounds of the two days. I think my GI system is not liking the chemo because it was not happy having anything in it.

 

I don’t want to dwell on it. I’m feeling better today, just ate again, and am feeling a bit more clearheaded. Mom and I are going to get massages today around noon so that will be fantastic. I needed a letter from my doctor to let them know that massages are approved, and thankfully my doctor wants me to get massages and exercise and generally try to live a healthy life. It’s easier said than done, I haven’t done as much yoga as I had been, but I’m working on it.

 

Thanks for tuning in for this update. Only two more rounds of this current chemotherapy and then four rounds of the next chemotherapy. Then a month until surgery.