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.

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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.

 

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!