I just looked at my blog and saw that my last post was on August 3rd. So much has happened since then it feels like ages.
Edited: I just finished this post and it is REALLY LONG! Don’t say I didn’t warn you 🙂
So I had outlined a bunch of things that were going to happen that Friday, August 4th. I did most of them.
- Punch Biopsy of lump next to where my previous surgery was. My surgeon couldn’t get the punch biopsier thingy to do what he wanted so he ended up doing a lumpectomy. He had just given me a local anesthetic but it didn’t hurt much, just mostly tugging. I didn’t know he was doing a lumpectomy until I saw the specimen jar that he passed over me to the nurse. Instead of being a small circular specimen, smaller than a pencil eraser, it looked more like a mini marshmallow. I wish I had had my camera because it was kind of cool.
- Results: another local recurrence of breast cancer. la di da.
- Chest Xray – well it turns out that I had 1.5 litres of fluid in my pleural lining. I know this because at the end of my transfusion, I wasn’t able to breathe. All the blood that was infused into me combined with the fluid in my pleural lining and created a huge pressure on my chest and I couldn’t breathe. (O2 sat = 80%). So I ended up getting admitted to Norris for the weekend and the next day had a thoracentesis.
- Result: Pathology report comes back with the pleural fluid malignant. My breast cancer has metasticized into malignant pleural effusion. Stage 4. SO FUN!
- Freak out a bit. Talk to my oncologist who tells me it’s not a 4 month prognosis if we can keep the fluid under control. So I probably need a pleuradesis which requires a 7 day inpatient stay. (LIES! It was a 13 day inpatient stay)
- I didn’t get the Eligard, Faslodex and Amacor. It was already a crazy day.
I got out of the hospital on Sunday, August 7th and on Monday the 8th, I started having the shortness of breath again. I had another chest xray on Tuesday that showed that my pleural lining had already filled up again and got signed up for ANOTHER thoracentesis that Thursday, the 11th.
Let me tell you, thorcentesis SUCKS! You are sitting up with your legs hanging over the side of an ultrasound bed with your arms and head on a pillow that is at a comfortable height on a table. So the position isn’t uncomfortable. Then the radiologist does an ultrasound on your back to find the area with the biggest amount of fluid. Once they find that spot, they sharpie it. Then they inject you with lidocaine (this SUCKS and HURTS!). After you are numbed up, they stick a needle into your back, through your chest wall and into the pleural space. Then they retract the needle, which leaves a catheter and stick the free end of the catheter into a vacuumed 1 ltr bottle. Then the fluid gets sucked out of you. It takes about 5 minutes for 1.5 litre and they stop when you start coughing your lungs out. They remove the catheter then slap a big bandage on it and off you go.
That Thursday, my friend Amy (who sat with me and ordered people around all day when I was having multiple panic attacks) and I mosied on to Norris. On that day, I did this:
- 1 unit of platelets
- This is where I had anxiety attack number 1. I hate getting platelets and have to have tons of premeds in order to not have bad reactions. Unfortunately, I have bad reacations to the pre-meds (IV Hydrocortisone specifically)
- 1 hour of Amicar (platelet medicine)
- Eligard shot (monthly to shut down my hormones)
- This was where I had anxiety attack number 2. Full on breakdown. Panic Attack brought on by a reaction to the hydrocortisone. I couldn’t stop shaking and crying. I felt totally crazy. The radiologist said he couldn’t do the procedure if I didn’t calm down. So I just steadied myself and they started the procedure. Unfortunately the place they had to insert the needle was just next to where they had gone in 6 days prior. So that felt lovely. They took out 1.4 ltrs but had to stop because I started coughing and then dry heaving which kicked off anxiety attack number 3. They patched me up and then Amy commandeered a wheelchair and a transport person and we went back to the day hospital where I had to get
- 1 more hour of Amicar
- My two faslodex shots.
- These are intramuscular shots – 1 in each hip. By this time I was a freaking mess and didn’t think I could do it but I sucked it up. They stung like bitches but it was all over. And afterwards, Amy and I ended up at a Red Robins in West Covina and had the best freaking hamburgers on the planet.
By Sunday, I was short of breath again. On Monday the 15th, I had another chest xray that showed I was full up of fluid again. I had an appointment with my oncologist and she said that it was advisable to try a procedure called pleurodesis. I would be inpatient for about 7 days (LIES!) and the procedure wouldn’t be painful just a lot of uncomfortable pressure (MORE LIES!). The procedure wouldn’t cure my pleural lining cancer but it would make it so that I wouldn’t have to get my pleural lining drained ever again.
First they put in a pigtail cathether. The person scans for a good placement using a ct scanner. Once they find a good spot, they inject you with shit tons of lidocaine (PAIN!). Once you are numbed up, they make a little incision and start weaving a long needle into your pleural lining. This is the part that is only supposed to be pressured but it hurts LIKE A BITCH!!!!! Once they get the needle in, they start inserting these expander things in so that your pleural lining opens up to the size of the catheter. This sucks. I was basically screaming. Pressure my ASS! Then they run the catheter up and remove the expanders and needle. Once they do this, 90% of the pain goes away immediately. Then they slap a bandage over the tube coming out your back and hook the catheter up to a bag. When they hooked me up to a bag, they anticipated moving me up to my room, but the bag filled up so quickly, they had to drain it. (600 ml) Then the bag started filling up again and I told them to wait and they freaked because the bag started filling up again super fast. Then I had another panic attack because the fluid was leaving my body so fast that my lungs couldn’t expand fast enough and I couldn’t breathe. So they had to mainipulate the bag so that it would fill up and nothing would drain so that my lungs could catch up. So they spent about 10 minutes letting the bad fill up, then drain a bit, fill up, drain a bit,… until I was breathing easier. All in all, they drained 1.3 ltrs from me in the fifteen minutes post placement.
Best part of this procedure: You absolutely cannot get the bandage wet. So no showers for me for over a week. My hair was SO DISGUSTING. I was able to do sponge bath stuff but still…blech.
They gave me pain meds that night but the next morning I woke up with pleurisy pain on my left side. I was in so much pain that I was basically on dilaudid for two days. I hardly remember anything. My mom brought me a care package that had been sent to the house and when I tried to email a thank you, I couldn’t remember what to type or what words were. It was so bizarre. So to explain why I didn’t post much or send thank yous for the cards, care packages, etc… it was because I couldn’t put two words together. I couldn’t even keep a conversation. If I wasn’t in so much pain it would have been sort of hilarious.
The next few days, they do a chest xray every day and monitor the fluid output. My output went to 20ml/day in a few days. So they did the pleurodesis. They shot me up with dilauded and then the thoracic surgeons shot medical grade talc into my catheter. The purpose of this is to irritate the pleural lining so much that it gets inflamed and the lungs and lining stick together, therefore removing the space where fluid could build up. It’s purpose is to avoid having to have thoracentesis all the time. After they inject the talc, you have to lie on your back, then right side, then stomach, then left side, each for 1/2 hour so the talc spreads around. I didn’t care because I was still out of it from the dilauded.
Starting around this day, I was so tired from the pain that I was basically in panic attack mode 24/7. They kept me hopped up on anxiety and pain meds. Oh, and I had sprung a slight fever so they went to the protocol for aplastic anemia and I was put on two IV antibiotics every 6 hours.
After a few days of no fluid drainage, they came and gave me more dilauded, and pulled the catheter out of my back. That was Wednesday and I had no draining or fluid build up (chest xrays every day) so on Saturday I got to come home.
Somewhere in there I got a platelet transfusion and a few units of blood.
So now I am resting and recovering from the hospital stay. My lower lungs still aren’t totally back to normal so I get short of breath easily. My back where the catheter was still hurts. Usually after a hospital stay, I feel fantastic. This was the worst I’ve felt ever. Worse than the mastectomy. I still feel like crap but at least I can breathe!!!! It’s going to take a while to get back to normal.
Tomorrow: Radiation (#17), Rad-Oncologist appt, possible Amicar infusion and faslodex shots.
Finally, a normal day!!!!
I think that doctors schedule for tons of appointments in the week before surgery so that you don’t have time to think about it.
Last Friday I had an ultrasound of my side because my surgeons knew that there were affected lymph nodes from the big tumor up my side into my armpit but couldn’t actually feel them. The radiologist found them but they are apparently way in my muscle and have had an effect of some of the veins in that area. So I may be having another ultrasound this Wednesday to show the surgeon. If that isn’t enough information, I will have to go to Cardiology and get some super ultrasound. I don’t even know when that would happen as I’ve don’t have a lot of extra time this week.
From where he was poking around and found the tumors, I’m not too excited at what might be the possible recovery. As usual, I’m hoping for the best. Right now, the original tumor feels like it’s doubled in size from a few weeks ago and it’s causing some major pain that shoots up into my shoulder. If I remember correctly, I had severe shoulder pain with the last one and as soon as it was removed my shoulder felt MUCH BETTER. Fingers Crossed!
Tomorrow is pre-op with the hospital. I have to be there around 8:30 – 8:45am. Not looking forward to getting up at the crack of dawn. They said it would take about 90 minutes at most. I’m going armed with information.
Wednesday is my normal lab tests, because it’s a blood week! Then I see my surgeon/s for further instructions and to get my 1000 questions answered. I remember most of it from the last time but now it’s different because it is not a mastectomy. I have no idea if I’ll have drains in or if I’m having a compression bandage. Lots of questions.
I do know that I’ve got to get a compression sleeve for my left arm. There’s a risk of lymphedema when you mess with your lymph nodes but I’ve been lucky not to have had my arm swell up. Now that they are going back in and messing with more lymph nodes, the risk of lymphedema is even higher. So my plan is to find out if my insurance will cover a sleeve that I can order this week through Norris, then, once I get paid, I’ll get a cutie one in purple or something from a trusted source online.
Thursday is free so far, but Friday is my normal transfusion day, so I’ll be back at Norris.
I’m still unsure about the plan for Monday/Tuesday. I think I’m getting labs drawn Friday morning and then going back for more blood on Monday so I have extra. Tuesday I have surgery but I have NO IDEA when!!! I’m hoping they will tell me tomorrow at pre-op. I mean, someone has to know, right?
I’m sort of hoping that they will admit me on Monday and give me my blood in the evening and then I’ll already be in a room for surgery. There is a separate tower for surgeries for Norris patients. Plus, they have room service! You use your TV to order snacks from food services. Such fun!!! I’m totally taking provisions though. Last time I had to wait forever for the dietary order to go through post-surgery. I’m not getting caught again.
I’d like to thank you all again for the amazing support and love coming my way. This time, psychologically, it’s a bit harder. Plus my medications that suppress my hormones are at war with the tumors that are full of them. I’m like a crazy person. Everything is pissing me off to a level that is off-the-charts. Please divert some of your prayers to my mom who has to listen to me literally screaming obscenities at inanimate objects. I’m doing better now. I couldn’t figure out why I was so enraged but now that I have recognized the possible issue, I’m able to better control my outbursts.
Thank god for Prozac and Ativan.
I do have a request. Please don’t call me. I’m not a phone person to begin with but right now I’m so overwhelmed and stressed that I just can’t deal with phone conversations. If you want to text, facebook or email – great! I just feel the need to totally curl up in the fetal position most of the time and when I uncurl I can answer your texts. Thank you so much for understanding.
I’m sure I’ll know more tomorrow. I need to go to bed now as I just looked and I have to get up in 6 hours to get to that stupid appointment.
I spent most of today at USC.
First up was my cardiac clearance appointment with my cardiologist. They gave me an EKG and it turned out fine so my cardiologist said I was good to go without further tests. Hurrah!
My PET scan revealed that I’m starting to get some buildup in my arteries, so I made an appointment with him in June to start getting that taken of. He’s the nicest doc; he came in 1.5 hours early just to accommodate my schedule.
From there I went over to Norris and had an appointment with my surgeon #2. He’s the head of oncology surgery and he and my primary surgeon will be working on me.
My surgery is at 9:30am on 12/2. After they put me out, they are going to run a unit of platelets. Then they are going to go in and remove the breast tissue and my glob of lymph nodes. Then they are going to sew me up internally, slap some steri-strips on me and let me wake up. They don’t put any kind of bandage on as it heals better without. I will have the compression tube top on. But they want me to start showering the next day.
I also might get sprung from the hospital the following day. If everything goes well, they always discharge their mastectomy patients the next day to avoid hospital infections. How Awesome!
They want me up and moving as much as possible. So I can’t drive but as long as there is no infection, I can go out if I feel up to it. He said visitors are good as long as they aren’t sick and haven’t been hanging out with sick people.
So I have the hospital pre-op clinic on Weds, Friday I have to get a bunch of labs drawn, next Monday the 1st I get a transfusion at Norris, then the big day on Tuesday!!!
Thanks again for your prayers and healing energy and good thoughts! I am truly blessed!
This is going to be a shorter post than usual. I see one of my surgeons tomorrow who will give me more details.
The PET/CT that I had a week or so ago came back with fantastic results. My tumor is a bit larger but there is no evidence of cancer anywhere else. Hurrah!!!
Because of that, my surgeon, oncologist and now, surgeon #2 decided that this is optimal time for surgery.
Surgery Date: December 2nd.
Type of Surgery: Left side Mastectomy and full axillary dissection.
This means that instead of getting rid of the one or two lymph nodes that are affected, they are scooping out the entire set. Apparently there is a fat glob in your underarms that hold all of your lymph nodes, so they carefully scoop out that fat glob after separating certain blood vessels and nerves from it.
It could mean that I will have no sensation under my arm for forever.
They will put a compression binder on me post-surgery to help with any bleeding and to hold me together and that has to stay on (except for showers and to launder it) for 2-3 weeks. I’m not allowed out of the house until my drain comes out which could be a week or two post surgery. I will have to go to Physical Therapy to regain mobility in my arm and they say that gets better in about 6 weeks. If all goes well, I will be out of the hospital that Friday the 5th.
One awesome thing is that since my case is so complicated, it won’t be just my surgeon with an intern to help. The head of oncology surgery is going to assist my surgeon – one can do the breast part while the other can do the lymph nodes. This takes my surgery from 2 hours to a possible 1 hour. Yay!
People have been asking what they can do or bring. Right now, I just need prayers (healing energy, etc..) for a successful surgery and recovery with extra prayers on Tuesday for my surgeons.
So, it’s countdown time! What a great Christmas gift to be cancer-free!!!!
Oh, and we shall not speak of the football debacle that occurred against fUCLA. Only positive vibes here 🙂
Happy Friday everyone! I hope you had a good week and have a great weekend planned.
On the work front, I finished up my last project for my last client today. I’m going into the corporate office next Monday to have lunch with the IT group and then I’m done with employment. Making the decision to quit working and applying for disability really was hard but I have to say, I feel like a weight has been lifted. I still feellike crap most of the time but my energy levels are a little higher. Instead of spending all day in bed, I’m good with an afternoon nap of about 3 hours. So I’m feeling the benefit already. It’s nice to know that if I’m having an off day, that I am able to just take the day.
This is a great article about the misconceptions of the chronically ill. If you ever ask me how I’m doing and I say “I’m fine”, it just means that I feel like my normal level of crap. I may look good but it’s an effort. The best way to describe my best days is that it is like the first day you go back to work after having the flu – you still feel terrible and want to stay home, but you aren’t really “sick.” Anyway, here is the link to the article:
So there is that.
This afternoon I had my second opinion/consult with the Chief of Surgical Oncology at USC. He was seriously the nicest man – very calm and knowledgeable. We chatted and then he examined me. He also didn’t find any issues with my lymph nodes (YAY!) but thinks that a lumpectomy isn’t enough surgery. Apparently because of where my tumor is the incision and healing area are not that much smaller than a full mastectomy. He’s worried about not getting clear margins and having a recurrence. So his vote is for a mastectomy. My medication is statistically good for about another year for shrinking tumors but that’s just in general. It may even last longer in me. Who knows?
He’s not for radiation because radiation causes blood sugars to go uncontrollable. Since my diabetes is already barely controlled, this wouldn’t be good. I would agree with that. I have an consult with the head of the USC Diabetes Center at the end of next month and I hope he can give me some pointers on my current meds as I am taking a ton.
Another thing that the doctor pointed out today is that the treatment that I am on is working. So there should be no pressure to operate until we feel that I’m no longer responding to the medicine. He feels that I could check in with my cancer team every two months and if we discover that something is changed then we can make plans for operating. The cancer isn’t fast growing so we have time to make plans.
He also agreed that I need to have a test infusion of the special platelets in the next few months to make sure that that plan will work. He is going to chat with my hematologist and get that going. I think I wrote before that my hematologist told my surgeon that she was too cautious. Well, the doctor I saw today was not happy about that, so he said that he was going to have to make people angry. I did not like being in the middle of that mess. I love my hematologist and she is wonderful with blood stuff. I love my surgeon and she is great with considering all the risk factors.
So like I said, everything old is new again. We started with a mastectomy, went to lumpectomy and radiation and now we are back to meds and a mastectomy at some point.
It was a good appointment and i’m a little easier about it. I’m still hoping that if I have a mastectomy I can do local anesthetic. I’m so no interested in the recovery from being put under.
In other news, I picked up the rest of my medical records from Norris. The pile of paper for just my lab results for 1/2013 through 4/2014 is about 4 inches tall. My project for the next few days is to go through it all.
After my appointment, I walked out into the Norris lobby and thought I heard the USC Trojan Marching Band playing. Mom and I went outside and it was the spring “Buy football season tickets” rally. A 10-piece band was there, some of the song girls/cheerleaders, a few football players and Coach Sark. I stood in line and got Coach Sark’s autograph and picture. Of course I look like a dork in the picture but still!
I don’t know how it is where you live but it is POURING here! Time to get snuggled up in bed with a certain cat and get some sleep.
Yesterday (Wednesday) was the day of the doctors. I just wish it was Doctors Who #9, #10, and #11 and my clinic was the TARDIS.
I saw my endocrinologist, Vanessa, in the morning. We’ve been working on the craziness that has been my blood sugars and finally, for the last week or so, my sugars have stayed between 120 and 170. This is high for most people but this is closer to our target of 120 – 150 for me. There is a blood test called the HgB-A1c that measures your average blood glucose over a period of three months. The A1c that we are aiming for is at maximum a 7 but really 6-6.5. At one point I was up at a 10. Two weeks ago I was at 8.5. Basically, my diabetes is out of control. It is because Tamoxifen raises glucose and so I started a brand new medication and things are stabilizing. I was also able to cut in half another diabetes medication because the new one is working so well. So Hurrah! But I still have work to do.
I asked Vanessa about the cancer surgery and she said that with an 8.5 A1c, I was at huge risk for infection. I knew that but was glad to hear it come out of her mouth.
In the afternoon, mom and I drove out to LA and the USC Norris Cancer Center. When I emailed my oncologist (Dr. T) last week about the possibility of not having surgery, he emailed me back within 10 minutes and had the breast center schedule a dual appointment with himself and my surgeon (Dr. M). He was available first and basically told me that I was responding to the Tamoxifen and that that medicine would continue to actively work on my tumor for another year or so. After that, it loses its effectiveness because it’s not meant to cure cancer. It can last as a medicine to shrink tumors for about a year and a half but after that it’s supposed to be used as a preventative medication for another 5-8 years. So, medication only is not a long term solution. At this point, Dr. M came in and we talked about surgery and her comments were that she was concerned that I can’t have the medication for the white cells but that she has operated on people whose white count was lower who are still around.
They both are really positive about being able to minimize risk of infection and bleeding out from surgery, by giving me platelets and blood and pre-op, during-op and post-op antibiotics.
There are two issues:
1. Dr. M said in no uncertain terms that she will not do surgery with my A1c at an 8.5. It has to be under 7 and optimally 6.5 or lower. I’m getting it retested at the end of February to see if it has gone down. She is also going to talk to my endo, Vanessa, regarding my case. She is also going to find me an endo at USC, not to change from Vanessa, but to have someone at USC that is familiar with my case to call if something happens with my blood sugars during surgery.
2. My overall life expectancy. I’ve never had this talk with my doctors because I’ve just always had the belief that when it is your time, it’s your time. Cancer, old age, car accident – no one knows. So I just leave that to God and go about my daily life. Now I have to have this conversation now with my hematologist (Dr. O).
What Dr. T told me about my cancer prognosis was:
If I don’t have surgery – I’m looking at probably 5 years.
If I do have surgery – I’m looking at 10+ years
If my anemia prognosis (pretending the cancer doesn’t exist) is 5 years or less: most likely no surgery
If my anemia prognosis is 5+ years: Definite surgery because I’m sticking around as long as possible.
I still am not ready to have chats with friends about this because it’s too new and I’m pretty emotional. It’s harder than I thought to ask and hear when your doctors think you might die but right now the conversation is necessary. So far I have done really well with all the health crap I have to deal with so I’m praying that my hematologist is going to return a verdict of 5+ years but I have to be prepared to hear the other. I may still go for the surgery as, quite frankly, I’m a stubborn bitch and a crappy prognosis can just fuck off.
After talking with my docs yesterday, I’m more comfortable with the surgery. Since I can have another year on the medication, it’s not like I have to have it right away. If it happens, I would probably do it during the summer when more of my family are on summer vacation.
Ugh! It’s been an emotionally packed week. I’m also low on blood and am getting two units tomorrow. La-La La-La, Life goes on.
I did get some GREAT news yesterday!!! Both Dr. T and Dr. M examined me and they kept taking turns feeling around my armpit/lymph nodes and there was some measuring at one point. It was to the point where I was wondering what the hell was going on! Last time they had examined me there had been one or two lymph nodes that were suspicious and my tumor was 3.5″. Yesterday, they couldn’t feel any suspicious lymph nodes and they estimate that my tumor is now 2.5″!!!!!
A cool aspect of this good news is that if they don’t find any suspicious lymph nodes, I won’t have to have that part of the surgery just the breast removal. The lymph node removal is the risky aspect of this surgery. People say that the mastectomy part is not bad at all – up and around in a week or so. So it ended up being awesome that we couldn’t do surgery in December!
People, always remember that “Rejection is God’s Protection.” If it feels that everything is going wrong, it just means that you’re either being protected from something worse or being prepared for something better.
I think this post was heavy enough even though I tried to end on positive news item. I will keep you posted on how things are going.
Go back to your regularly scheduled lives.
Schedule a mammogram or feel yourself up.
Have Faith and FIGHT ON!!!
My GOD I’m terrible at keeping this up to date. Apologies all around.
I’ll get to the cancer-y stuff in a minute but here’s what you’ve missed the last week or so:
1. My birthday weekend kind of sucked. As this year has mostly been a festival of suck, I shouldn’t have been surprised. I spent my actual birthday getting a transfusion with the promise of a great next day at Disneyland. That didn’t happen. I woke up super early the next morning and it was raining. When I actually got up, it was cold and nasty. With visions of my doctors’ angry faces in my head, I cancelled. No good my getting sick three weeks before surgery. I stayed in bed and
pouted watched movies all day. I tend to feel like crap for a day post transfusion anyway, so it worked out. The next day (Sunday) was awesome as my brother, sister-in-law and lilli came to the house for some San Biagio’s goodness and as my present, bought and installed both a hand-held shower sprayer thing and a new water filter for the filtered water dispenser in the sink. Clean, yummy drinking water and a good shower. Happy. Camper.
2. Last week, I spent at my client site. All Week. 35 hours on site. Usually I work 15-20 hours, mostly taking care of systems and resolving issues. Last week was crazy – training for a new system as well as managing a major upgrade for another system. I’m so not cut out for full time work anymore. I made it through the week but I couldn’t have done it again this week. There was one day where I spent 4 hours on the freeway. That. Sucks. I knew it would be hard but, being self-employed, you don’t get paid if you don’t work. So I pushed it big time and now I’m clear to not have to really worry about working very much during my recuperation time. I am on email/call with my client but they know not to expect an immediate response. They have been very good to me.
3. I got a jury summons! HA! I had an appointment with my hemo today and totally forgot to bring it but I see my surgeon on Weds and will have her fill it out. My jury date is 12/16. I don’t think so. They need to put me on a do-not-summons list. I happily did my civic duty for years, but now, they’d have to let me have bathroom breaks every 10 minutes and adjourn for naps at 3pm.
4. USC IS KICKING ASS! We’ve won 5 straight and this weekend is the biggie! USC v fUCLA!!! We are going to smash the bRuins!!! I’m a little excited. I send weekly tweets to our AD Pat Haden asking him when he is going to announce Coach O as our new head coach. He hasn’t gotten back to me. I think if PH doesn’t hire Coach O, a ton of our Juniors will opt for the NFL and we may lose some of our better recruits. He could be a legend at USC if given the chance. Pat Haden says he has a hard decision to make. He really doesn’t. My message to Pat: Get off your ass and fucking hire Coach O.
On to the cancer-y stuff:
If you’ve been reading for a while, you know that my blood sugars are going crazy. I saw my endocrinologist last week and she added YET ANOTHER DRUG to my collection. It’s called Invokana and it’s only been on the market for 6 months or so. It takes the glucose out of your food and makes you pee it out. So the majority of food glucose never hits your bloodstream. Or something like that. I’ve been on it a few days and it has seriously improved my sugars. I also had to increase my injected insulins, give an extra shot at night and double my metformin. I called my endo today and she asked me to stop by. When I went there this afternoon, she increased my invokana to 300mg. Funny enough, one of the possible side effects is baldness.
So even without chemo, I may lose my hair.
If I do, I hope it grows back auburn and curly.
Today I had labs and an appointment with my hemo. My labs came back ok. Hemoglobin was 9.6 (high for me!), platelets were about the same, still no white cells, blah blah blah. Of course, it wouldn’t be a doctor’s appointment these days without a semi-meltdown, so there was crying. I think I’ve cried more since August than in all the years prior to that. It’s sort of a pain in the ass. I was a bit overwhelmed. I have my port placement on Wednesday and before that, I have to have labs, see my surgeon, have a platelet transfusion, get the port, then go back to the day hospital and have 2 units of blood. This starts at 8am and ends somewhere around 9-10pm. What is it about Wednesdays? All of this, by the way, on a freaking empty stomach! There is some sedation involved in the port placement so no food or water. They better have a sandwich waiting for me when I wake up!
To prepare for said port placement, I have to take Neupogen shots today and tomorrow. This is the white cell medicine. If 2 shots bring my counts up, then I will take 5 shots the days prior to surgery. If two isn’t enough, then I will take 7 shots the days prior to surgery. The negative side effect – bone pain. I’m so OVER IT!! I took my shot 5 hours ago and so far so good. Other than, because of every other medicine I’m taking, I’m having hot flashes.
I went off of the Synthroid on the 15th. It was giving me an emotional multiple personality disorder. It stopped within two days of stopping the medicine. Now I know I’m just my normal crazy self. 🙂
I go tomorrow (Tuesday) for my Keck pre-op. This includes, but is not limited to, the following: admission crap, blood work, EKG, anesthesiologist visit and a future date with a cardiologist. I have a bit of high blood pressure and heart rate. Considering I’m a little stress, this seems normal to me but to make everyone happy, I need to see a cardiologist. As I was hearing this, I freaked out and thought “OMG! I might go into cardiac arrest!.” But then I realized that people with actual diagnosed heart problems have heart surgery and do fine, so I’m only mildly alarmed by this.
As an aside. I know that there are tons of risks and I know that I have to be made aware of these things. But it is really hard to stay positive when you are constantly reminded that you could die. It’s like “This <insert terrible, horrible, no good, very bad thing> could happen. Why are you stressed?”
Again, I’m SO OVER IT! With all the combined crap I have wrong with me, the pressure to keep doing the right things is INSANE! Do I eat a fresh peach (for gluten free diet which helps with my blood sugars) or do I eat the pre-packaged cup of peaches (not gluten free or healthy but good for neutropenic diet). Take this drug because it helps with iron overload or blow it off until after surgery because it can destroy platelets which I need right now?
I feel like every decision I make is a life or death decision. I know it isn’t that way but that’s the way I feel. I just want this stupid surgery to be over with so I can go back to being a normal person.
With a frankenchest.
For fun, I went to the “Women’s Image Center” at Norris (I think that’s what they call it) and met a very nice lady who is a trained mastectomy bra/prosthesis fitter. I’m also anxiety ridden about my post-surgical rack. Seriously, it should be a rule that if you don’t qualify for reconstruction that they have to take both breasts because WTF do you do with ONE? She showed me the actual prosthetic (you have to buy an ugly old lady bra with a pocket inside the cup that holds the prosthesis) and I found myself discussing how realistic it feels. Realistic? Let me tell that to next guy that gets to second base! I would feel like false advertising.
It has the color of Silly Putty.
I wonder, if you smash it down on the comics page, will it come up with an imprint? I don’t think I’d mind it so much if I knew that Garfield was on it.
I’m sure I have more to say but Chester the Cat is trying to sit on the keyboard and I have to get up at dark ass o’clock for my pre-op visit.