I would have sworn that I’ve updated this blog since last September but apparently not. There has been lots going on. I’ll make this as short as possible so that I can get everyone up to today without making it a novel.
When I last updated, I had just gotten the penis radiation drawn on me. I reread that entry and realized that I failed to note that when they positioned my arm for the new radiation drawing, they pulled my left arm up higher than I was flexible post-surgery/lumpectomy. This was exceedingly painful and I was basically screaming at them to let me move it. They kept asking for 5 more minutes and, when it was over, I was crying and in incredible pain.
The next morning, I woke up and my left shoulder/arm/side were at a pain level 11 and I couldn’t move/lift my arm. No strength in my hand either. If I needed my arm to be in a different spot, I had to pick it up with my right hand and move it. I can’t remember back to what we did other than pain meds. I still have massive pain in this arm and shoulder 9 months later.
Because I couldn’t move my arm, I had to stop the radiation. Got to take the penis outline off of me!!!
Then I got admitted because my platelets went down to 4 and I got a nosebleed from hell. I was about to be discharged from the hospital a few days later when I got a humongous nose bleed and the doctors said, Nope you are staying. My nose bled for about 12 hours. The next day some doctors from ENT came in and were going to clean out my nose and cauterize the bleed spot so that I could go home. They didn’t give me any anti anxiety or pain med but went in with those scary ass tweezers and suckers and stuff. Apparently they saw something kind of far back up my Right Nostril and wanted to get it out. I’m screaming in pain so they start giving me IV Dilauded. Well my adrenaline was so high that my body didn’t react to the Dilauded so they gave me more and then Ativan and then who knows. After 4.5 hours of being tortured, they finally just put a ton of packing in and called it a night. My mom was there and can attest to the fact that it was incredibly traumatic. I started to relax and fall asleep and mom went home.
Apparently, the next morning, I decided to go for a walk. I don’t remember this or most of that day. The housekeeper saw me walk out of my room with blood all over me and the floor. Then I turned around back into my room. She came after me and found me on the floor unconscious with blood pouring from my mouth. They called a CODE on me and when I finally woke up enough, I was in the ICU with a second IV and my entire family and a few extra friends were there. Apparently the hospital called my mom and brother and basically told them that I was not going to make it. They thought that I was having a brain hemorrhage as most of them didn’t know what had happened the day before with the ENTs. I was in and out of it after they were able to wake me up and respond to questions. Next thing I know, my aunt is flying in from North Carolina and my friend Sue was flying in from Philadelphia. It’s been considered that I was possibly OD’d on pain meds during my ENT visit but noone knows exactly what I got. I was out of ICU the next day and home a few days later. I got to have a nice visit in hospital with my USC besties and a nice visit with my Aunt and Sue after I got discharged.
So now, I continue to get nosebleeds that last a minimum of 2 and go up to 14 hours. I’ve learned how to contain them more to the 2 hour range. It’s ALWAYS that same right nostril, so I’m convinced that they just completely FUCKED up my nose. I refuse to let the ENTs near me.
Again my platelets were crazy low, so I stopped taking the Eligard and Faslodex. My oncologist at the time pretty much told me it was a waste of time anyway. I basically decided not to treat the cancer for a while.
I ended up in the hospital again in December for a few days but can’t remember why.
At the end of January, I got a small lump under my jaw. I thought it might be an infected tooth but the lump grew to be golf ball sized and you could totally see it. Into the hospital we go. They attempted to drain it (so fun!) but it ended up being an infection. I couldn’t open my mouth wider than to get a straw in so I was on a mushy food diet and again my pain level was an 11. It was so bad, I had to go on a Dilauded pump with extra meds before and after I ate. I went from 128 to 108 in two weeks. I had to have a CT scan with contrast and because I’m allergic to the contrast they had to give me 150mg over 12 hours before the test of Prednisone. The prednisone actually took the swelling down noticibly so I was on a low dose of Pred for a week after discharge. I was inpatient for 2 weeks. Turns out the infection was caused by a blocked salivary gland so I have to eat sour candy every day. Sour Patch Kids are the best.
Now I’m back up to 112 lbs but I’m having problems gaining weight. I need the weight in case I get sick so it won’t be dangerous if I lose weight while sick. Life is strange.
Within a few weeks after that, I was starting to have massive pressure in my chest and shortness of breath. After tons of scans and another thoracentesis, it was determined that my breast cancer, that had spread to my right pleural lining, had now moved to my left pleural lining and there were tumors in my lungs. I was given a new oncologist and they started me back on the Eligard and Faslodex, even though my platelets are still low. I get those shots once a month.
At the end of March, I was having severe shortness of breath and I was admitted again. I got another thoracentesis and an order for at home Oxygen. So now I’m connected to O2 tanks and compressors most of the time. When my blood count gets low, I have to wear it all the time but, like today, I would forget about it for a few hours and still do okay. This is a forever thing.
My last admit to USC was the first week of April – so I’ve officially gone 2.5 months without going inpatient. HURRAH! I get tired easily so I’m not going out a ton but I can see friends and go on one walking errand a day or every two days. This is better than a month or so ago when I couldn’t walk across the house without gasping for air!
I go in every Wednesday for lab tests and a shot of medicine that is supposed to help with my Platelets. Every fourth Wednesday, I get the Eligard and Faslodex shots. I feel unwell after the Platelet shots until the next day. The day I get all the shots, I feel terrible for a few days. I see my new oncologist on the “big shot” days. I really like her – she seems positive that we can slow down or stop the cancer progress. I’m definitely optimistic.
I’m also getting transfusions pretty much every week now. My hematologist is worried that if my nose really bleeds, my blood count will go too low and it could cause cardiac arrest or stroke. FUN!!! My diabetes is hanging in there…. I’m still here so all is well!!!
I am encouraged by my labs. My oncologist is running the CA 15-3 test every month. This is the tumor marker test for metastatic breast cancer. People without cancer will have a level of 30 or less. My first test a few month ago was 385. My most recent test was 297. Going down is a good thing!!! Fingers crossed that it keeps going at that direction. I did some research and some Stage 4 patients have a 15-3 in the multiple thousands. I’m happy with my little number.
On fun notes, since I last wrote, I have seen a bunch of musicals: Hedwig and the Angry Inch, Amelie, Fun Home, Finding Neverland, The King and I, and Into the Woods. In August & September, I’m seeing Hamilton (WORK!). Mom and I renewed our season tickets for the Pantages for next year and having tickets to Aladdin, Love Never Dies, School of Rock, The Color Purple, On Your Feet and Waitress. I’m also hoping to see Something Rotten and Bright Star this fall.
My mom turned a big birthday this past March and so my brother, sister-in-law, niece and I took her to Universal Studios and we basically spent the entire day in Harry Potter World. I got a great deal from AAA so we actually have annual passes. The summer is blocked out but we don’t have any interest in going in the summer anyways. We are looking forward to hitting the stores in the front of the park next time!
We just had an amazing visit with my cousin Mike and his wife Megan. I hadn’t seen Mike for about 17 years and I had never met Megan other than facebook. They are a wonderful couple and we had a great visit. Megan has a cousin out in LA who took them all over Hollywood for a day or two. We spent the time just talking and talking. Hopefully we can make it to Austin (where they live) within the next year – it sounds like a blast!!! I also have friends and other family that live nearby that I would love to see. Fingers crossed!!!
Next up for me is labs and the platelet shot tomorrow.
Oh, and I have a new cat, Hallie. I had to put down Chester last August. I adopted Hallie in late September. She just turned one in April. I call her “Hurricane Hallie”. She’s mostly sweet then she goes crazy out of nowhere. Typical cat!
Before you go any further, this ended up being a seriously long and somewhat whiney post!
Yep. It’s my cancerversary.
Cancer folks have all sorts of ways of figuring out this date: date of last treatment, date of first treatment, date of surgery, etc… I decided that it was the date I was formally diagnosed. The day I met with my doctors and heard the news out loud and in person.
August 21, 2013.
It’s a strange day. I’m happy because it means I’m still here. Prior to getting cancer I always thought that it would be the worst thing to happen because I didn’t think there was any real treatment options available to me and that I would probably die quickly. On the other hand, it kind of sucks because, you know…cancer.
I don’t consider myself a survivor. The medications I’m on continue to make me feel like crap and I still don’t have full movement or feeling in my left arm/side. Every new pain brings about a bit of a panic attack – is it back? You can’t rest easy ever and there’s enough physical side effects that you can’t forget about it. I try not to dwell but everytime I get comfortable, something stupid happens. So I consider myself a warrior. I may not have cancer in my system right now but it has certainly marked me.
FYI: Breast cancer is NOT cute and pink.
As far as I know, I’m cancer free. I see my oncologist next week to go over some test results. I have a scan and visit with my surgeon in early October. Usual yearly stuff. Although this is the first year for scanxiety. Last two years I knew I had cancer when I did my tests – this year, I’m hoping that I don’t have cancer again. I don’t think so. Staying positive.
Everyone is still really happy with how the surgery went and my recovery. I swear by my doctors so if anyone needs a Los Angeles recommendation, get in touch with me. I started my post-surgery medicine about 5 months ago. I get a shot once a month of Eligard – this puts me into medical menopause. After the first month of that I started on an AI : Exemestane. This stuff shuts down all the extra estrogen – the kind that keeps your bones and muscles strong. California summers are NO FUN combined with hot flashes.
So the cancer is stable as far as I know. With the heat my arm and side are a little puffy and sore which contributes to the increase in whining.
Plus its F-ING hot here in So Cal!!! I hate it here. I could totally do Alaska 9 months a year and come back to So Cal for January through March. Although I would miss my family and friends. And Taco Tuesdays.
The most recent thing I’m dealing with is a hospital stay all of last week (Sunday 8/9, late in the evening through Friday, 8/14 in the morning).
It started on Sunday 7/19. I started two new medications; both were liquids that I had previously taken but the companies had made these medications into tablets. Much easier to take. I started them both on that Sunday but by that Wednesday I felt like hell and had a low grade fever. I called my doctor and they prescribed some antibiotics to try to get rid of the fever and keep whatever thing I had from getting worse. The following Monday (27th), I was feeling worse, still had a low grade fever and had gained 10lbs (in 8 days!). I happened to have an appointment with my endocrinologist and she looked at my swollen stomach and immediately detected that my gut bacteria was all out of whack and it was probably the antibiotic.
I don’t know why I thought of it but one of the new medicines was an anti-fungal to keep all the bad bacteria from growing in my lungs (it’s usual for someone with my anemia to take these drugs to make up for the fact that our immune systems are super bad). Anyway, after some research, it turns out that the dose for this drug on the first day you take it is 600mg for both the tablet and liquid; BUT the dose for day 2 through x is 300mg for the tablet and 600mg for the liquid. I was prescribed 600mg for every day with the tablet. My side effects were listed in the overdose side effects list. Both my doctor and the pharmacy missed the dosage change. Luckily I have an excellent doctor who knows I research the shit out of things so she took me completely off the drug as soon as I emailed her. (That was monday the 27th)
It had done a number on me already and on Weds the 29th, I went in for my labs and my hemoglobin had nosedived to 5.5 which is a scary low. Like, don’t get out of bed or get stressed or you could have a heart attack/stroke level. So I was scheduled for 4 units of blood (two on Thursday, two on Friday). My blood pressure was super high, but my fever went away after the first day of blood. I did ask to have another lab test done the following wednesday (5th) to make sure that my counts were okay.
I didn’t bounce back from the transfusion like normal but I felt a little better. By end of the weekend my fever had come back. On Wednesday the 5th, I got my labs done and my blood counts were ok but my potassium was super low. Back I went to the hospital on Thursday the 6th for a 4 hour infusion of potassium.
BTW: do you know that potassium hurts while it goes in? Like someone is slicing through your veins with a fire hot razor. I had a major panic attack so they gave me some ativan and put more saline in the potassium so that I could stand it.
I started to feel better again but the next day I went to lunch with some friends that my mom used to work with and I started to not feel well (like when the flu is coming on). The next day (Saturday the 8th), I woke up with a super sore throat, swollen painful glands and a low grade fever. I stayed in, hoping that it would go away but the next day I woke up feeling worse. My fever got too high (102.6) and, after talking to the doc on call, away we went (Thank you Joyce for driving to/from and keeping my mom company!) to Norris for me to be admitted.
I stayed from Sunday night through Friday morning. I had a fever that didn’t go away until late Tuesday. I got a chest xray, cat scan of neck/chest, doses of super antibiotics every 8 hours, and three units of blood. My blood pressure averaged 180/88 so I was put on an ACE inhibitor and some other heart medicine. I was also started on an anti-viral medicine. Now I have a few more pills in my at home drugstore! My fever stayed down.
Another thing happened while I was there. With Aplastic Anemia, you don’t make white cells. This is a huge problem because, well, you need those to fight off any infections. There are two lab results that we are concerned with:
WBC: Actual White Blood cell count (Normal is 4.5 – 10k)
ANC: Neutrophil count (Neutrophils make WBCs work) (Normal is 1 – 1.8)
My counts are usually severely low. My WBC is usually between 0.8 – 1k. My ANC is usually 0.1 to 0.3. On my Sunday night admission blood test, my WBC had plummeted to 0.34 and my ANC was 0.00. Basically, I had no working white cells in my system. So everyone had to wear masks in my room and I had to go on a low-microbial diet. When I was discharged on Friday, my WBC had risen to 0.5 but my ANC was only 0.02.
So, I really shouldn’t have been discharged but it’s a fine line between risking infection at home and staying in the hospital too long and picking something up there. So my discharge instructions are basically: don’t go anywhere, don’t have any visitors and don’t eat anything not made in your house.
I’m doing ok with this. I did go to Target to pick up a few things but I wore a mask and gloves. My daily getting out of the house is driving through Del Taco for an iced tea. I’ve lost all the weight gain plus 5 more lbs. I’m going crazy!!!
No fever though – so YAY! Gigantic headache.
I get my labs done next Wednesday the 26th and hopefully I’ll be cleared to go out more. Eating out at restaurants or food made by other people is probably out for a while. I had to cancel plans with a friend today and another friend is in town from out of country and I can’t see her. Luckily I saw her a month ago. Totally bummed. I also missed my friend’s birthday. The hardest part of all of this is all the plans I make have to be pencilled in. I feel like I”m constantly disappointing people. SUCK!
There is a ton more to say, including a funny story about a urinalysis, but this is already way too long. If you’ve gotten this far, thanks!!! Thank you everyone for your understanding and constant support!!! I couldn’t do this without you!!!
Lots of things happened last week, including a turnaround drive to Davis, CA for my grandpa’s funeral on Mon/Tuesday. That post will come up tomorrow or so.
I had an appointment last Wednesday with my Oncology Team.
Some bullet points:
1. They are concerned that my neck/shoulder/arm/wrist and hand pain is so severe (it’s a bit better now), so they ordered a C-Spine MRI to make sure that:
a) the cancer hasn’t travelled to the bone (unlikely, since my tumor is still the same size)
b) that I haven’t injured my neck in any way.
Now, I’m happy that they are so thorough but this is a Sucky McSuckerson MRI for those of us with claustrophobia. Why? Because it involves laying for 45 minutes in an MRI with your head/neck in a catcher’s mitt. Seriously.
Oh yeah, that’s gonna fly! I’m not sure what the USC Neck Coil looks like but I’m totally taking advantage of Ativan and the panic button. At least I get to lie on my back for this. The 30 minute breast MRI on my stomach was horrible!!!
2. If you’ve been following along, I keep getting infections this year. This is not making my surgeon happy as, even though I recover from antibiotics, she’s concerned that I’ll get a massive infection quickly with surgery. She told me that she’s waiting for the “Big Thing” whatever it is to happen so she can call off surgery without guilt. So, she’s getting uncomfortable but is still on board. I totally trust her and I have another 10 months on the medicine before we HAVE to make the decision. I’m still hoping for summer. We shall see.
3. Good news!!! One issue that has to be dealt with for surgery is my HgbA1C. This is a test that measures my average blood sugar over three months. Five weeks ago it was 8.1. Last week it was 7.3!!! It is a huge jump down and my docs are very happy that I was able to bring it down so much in such a short time. We need the number to be in the low 6’s before I’m good for surgery. Having high blood sugars is just an invitation for infections to start and since we can’t pump up my white cells without killing my platelets, I have to get these numbers down. I started exercising a little yesterday. When I mean a little, I mean like a 10 minute walk where I had to stop and rest for a bit. Ugh. I have the body of an 80 year old. I’m losing weight with my meds but it’s all muscle. I’m going to try to do a little every day…working up to a little more every week.
So overall, I’m status quo. I get blood this Friday!
Well, my cat just smacked the back of my head so it’s obviously his “good wet food time”.
Happy St. Patricks Day!
Quick! Which movie is that title from? (Answer at the end)
I hope everyone had a great Thanksgiving! Ours was super nice. Tony, Debbie & Lilli came down and we had a relaxed dinner and they brought in all of mom’s Christmas decorations and built our Christmas trees and put the lights on the big tree. They are most awesome! Tony, Debbie and Lilli, I mean. The Trees too. Everything is awesome.
We are having the most perfect weather here in Southern California today. It’s 70, blue sky, short sleeves weather. Just perfect for USC to BEAT THE bRUINS! T-26 minutes until the game starts! FIGHT ON!
Far cry from the crazy cold rainy day we had yesterday. Must have sucked for those who went out on Black Friday. I was not one of those. I didn’t get up until 11am and then went out to dinner with a good friend at La Paloma in La Verne. They have really good food – especially the ground beef tacos and rice. And deep fried ice cream. with honey. Not that I would know because as a diabetic I shouldn’t have these things.
(I took extra insulin)
This past Wednesday was the big day. Labs, Surgeon appt, platelet transfusion, Port placement surgery, and then red cell transfusion. I also had to NPO it after midnight because they were going to give me sedation for the port.
The only thing that went well was the red cell transfusion and I think it was because I was too drugged up by then to stay awake for it.
On Monday, I had labs drawn and my hematologist appointment with Dr. O and Kristin. My hemoglobin was 9.6 (good for me), my white cells were 0.9/0.2 (my usual sucky counts) and my platelets were 29 (normal suck for me). We discussed the Port Placement surgery. The shots I need to give myself before surgery are a medicine called Neupogen – this should increase my white cells. We decided to do a trial run of Neupogen in preparation for the Port surgery. That way, we would know on Wednesday, when my labs were drawn again, how the medicine worked on me. So I took the shots (which caused me excruciating back pain – lovely) and optimistically went to Norris on Wednesday.
Putting it mildly, my labs were SHIT on Wednesday morning. My hemoglobin had gone down to 8.8, my white cells were now 0.7/0.2 and my platelets had DROPPED to 15!! 12 is critical. Not the results any of us were expecting.
I found out these lab results while I was at my…
I hadn’t gotten my lab results back yet when I innocently walked into the appointment with Dr. M. She told me that there was a new issue. (add it to the list) Apparently, I need to have cardiac clearance to proceed with surgery on the 10th. My EKG from the PACE appointment on Tuesday showed the high heart rate and with all of my other crap, they feel it is best to see a cardiologist and perhaps have an echocardiogram. (Which is fine with me considering the heart problems in my family) The big issue? It is the day before Thanksgiving and the doctor that they want me to see (Dr. S) is out for the weekend. He is apparently the best and they don’t know when I can get in to see him. Fun Times.
I’m absorbing this bit of information when I innocently ask about my lab work and it is revealed that my numbers have all dropped. At this point, I’m TOTALLY in overload and Dr. M starts talking about what we should do. Apparently the surgery can be postponed into next year. She and I decide to move forward with planning for the surgery on the 10th with the knowledge that it may be postponed.
I’m thinking at this point: The only thing that changed between Monday’s labs and Wednesday’s labs was that I took the Neupogen. Inquiring minds want to know if it had something to do with this….hmmmm…
I finish up with Dr. M and head over to the Day Hospital for my…
All the nurses were cheering when I walked in because they have been wanting me to put a port in for about 12 years and they knew that today was finally the day. One of my favorite nurses was my nurse for the morning and was so happy to insert my final IV.
I was nervous about getting platelets because the last time I needed them in August (for my biopsies) I had a horrible reaction to the platelets and we had to stop the infusion after only 15 minutes. This time around, they were prepared and gave me tylenol, benedryl and an IV push of hydrocortisone to ward off any allergic reaction I might get. It must have worked because I got through the bag of platelets with only a slightly itchy sensation. Part of that could have been that I had all these drugs in me and I hadn’t eaten yet.
The bag of platelets infused slower than they thought it would and the folks from Radiology (port placement) got a little twitchy about me making it upstairs for my port placement. They sent someone downstairs to do all the intake paperwork with me and then just kept calling every 5 minutes to see if I was done. After my platelets were done, I had another set of labs drawn to see how high my platelet count had gone up. They expect that each bag of platelets will pump you up about 50k. With that number, I would be good to go with my port placement. Finally my mom and I went upstairs to Radiology for my…
I’ll end the suspense by telling you that I currently DO NOT have a port.
I got called back, got gowned and was taken to the room where they were going to do the procedure. The two doctors, Thing one and Thing two, started telling me all about the procedure, showed me what the port looked like (hello, GOOGLE?) and how it worked. I then noticed a plethora of machinery hovering over the bed and I asked if it was going to be directly and closely over me during the procedure. They said that it would but that I wouldn’t notice because my head was going to be covered with towels and a drape through the whole thing.
What was that they said?
I instantly go into panic attack mode and explain to them that I am completely claustrophobic to the point of not being able to have a sheet over my head while I’m in bed and WTF? Apparently the area has to remain sterile and they actually tape something to my neck and then drape the rest over my head/face. I asked if it could be off of my head and just held up but they said not really. FUCK! So I freak out completely and told them I needed a minute and left. I went and fell apart in the ladies room and then decided that I would just deal with it and get the thing done. I’m a big girl now, you know.
When I came back in the room, Thing one had a look on his face and Thing two was on the computer. They then came over and told me that there was a problem. OF COURSE THERE WAS!
Apparently, the post platelet labs had just come in. My original platelet count was 15k. Post-platelets it should have been 65k.
It only went up to 17k.
Thing one went into this whole explanation about what the risks of the procedure was on someone with that low of a platelet count (Again, Hello? Not. An. Idiot.) and that he wouldn’t do it if it were me. The entire time I’m telling him that OF COURSE we aren’t doing it, but he’s so intent on telling me how he wouldn’t do it that he didn’t bother listening to the fact that I was agreeing with him. Then Thing two hollers from the computer something along the lines of “have you seen her white cells levels?” Like they hadn’t checked them. So then I got a semi-lecture about how someone with a white cell count of 0.7/0.2 should not have even been sent up for the procedure and about how Thing one did the procedure with someone like me and they got all sorts of massive infections and were sick for months. Thing two mentions something from the labs so I wander over to where he is when I hear
So there was a table in that area of the room that had all kinds of things on it for my procedure. It is apparently a sterile area and I had almost wandered into the sterile area. The nurses were yelling at me and I’m thinking that if it is such a BIG FUCKING DEAL, PUT A FUCKING SIGN UP! Now I’m nice and pissed off and crying. Thing two is talking to Kristin from hematology, I say goodbye to Thing one and get the hell out of there. I’m a total basket case and A nice nurse brought my mom into the dressing area where I got de-gowned, dressed and just had a good mom-cry.
At this point, I’m tired, frustrated, overwhelmed and really freaked because if my platelets and white cells aren’t good enough for this procedure, how the hell are we going to get them in shape for surgery in less than two weeks?
I get my stuff and we go back down to the day hospital for my…
Red Cell Transfusion:
I was there about an hour too early so my morning nurse asked me what happened. I told her what happened. Imagine, if you will, the Dementors from Harry Potter, slowly moving about the day hospital, sucking the souls out of all of the nurses who, one by one, realize that they still have to deal with my veins. It was a dark time in the day hospital my friends.
They had a private outpatient room waiting for me (with an actual bed, not just a recliner) and I’m not really sure how it all happened but I ended up in the bed and mom was in the comfy chair in the room. Going back to my theory on the neupogen, I got online (LOVE MY IPHONE!) and googled “neupogen platelets” and there, right on the neupogen site, in the “this shit can happen if you take this medicine” list, it says “if you experience bleeding or bruising, call your doctor because your platelets are messed up.” As an analyst, this is where I would start testing to see if this was the reason my platelets went to hell.
I text Dr. M and let her know that a)my port didn’t get put in and b)my platelet count didn’t bump up. She also let me know that the final deadline to get full clearance for the surgery is December 5th. That would be 5 days from now. Not a lot of time.
A few minutes later, Kristin comes in. Dr. O is out for the long weekend so poor Kristin has to deal with me. Overwhelmed, scared, pissed off and frustrated little old me. She has spoken with Dr. O and they have decided to find out why I didn’t get a bump with the platelets. So another set of labs is taken and they are going to try something called HLA matching. This is the same sort of matching process that is used for bone marrow transplant matching. The lab/blood bank has to work its magic to get the HLA things, then it has to be run against platelets in its bank and possibly throughout the country’s blood banks to find bags of platelets that have the same HLA stuff. This could take until the 4th. Even if we get HLA matched platelets, they don’t know if that process will work any better.
So I bring up the Neupogen and am quickly told that it never is an issue with platelets.
I’m assuming that the makers of Neupogen just randomly decided to print that on their fucking website for fun. Just because you have yet to see that reaction happen doesn’t mean that I’m not the first person that you will see it happen to. At this point I’m feeling very blown off. I know that this is all sudden and unexpected for them too but seriously? Especially when what I am telling you is written down on the medication website and I can show it to you. At this point, I was so emotional (and now pissed again) that our conversation was not going to be productive so she gives me a hug, “Happy Thanksgivings” me and goes on her way.
I must say it again, Kristin is awesome. Unfortunately, she is always the one who happens to be there when these stupid things happen and I’m a lunatic. I don’t think she reads this but if she does: “Kristin, I heart you!”
(She probably has a barium enema order pre-filled out for me…just in case)
By the way, have I mentioned that I STILL have not eaten?
So, I eat and sleep through most of the two units.
We left for Norris at 6:00am. We got home at 8:30pm. Long. Day.
This is where we stand:
1. I need cardiac evaluation
2. I am not retaining platelets
3. The neupogen is not increasing my white cells.
4. Not a Wednesday issue, but my fasting blood sugars are still too high. I’m now on diabetes medication #5!
And all of this needs to be solved by Thursday.
I’m going to email my doctors on Monday with my concerns and I have a feeling that my surgery will be postponed. If it is, then it will be scheduled for sometime next year after we can go through and solve these issues methodically. I’m not very comfortable with the way things are right now and it seems like we have too many things (life-threatening with surgery) to fix in a super short amount of time. I am confident that we can get these worked out.
So that is the drama from last Wednesday.
In case you haven’t seen my facebook or the news, USC just lost to fUCLA. I still loathe fUCLA but in tonight’s game, we were simply outplayed by a team that wanted it more.
Still, as always,
PS: the title of my post is from the old Bing Crosby movie “Holiday Inn.” Coincidentally, “Holiday Inn” is the movie where the song White Christmas debuted.
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.
Of course it had to happen.
As soon as you are comfortable with things, they change.
And you learn, once again, never to use a sharpie on your calendar.
The change of the day is …drum roll please… My surgery has been rescheduled from Dec 5th to Dec 10th.
(you know you made the drum roll sound – don’t lie!)
Apparently (and smartly), my surgeon didn’t want to operate on me on a day that my hematologist was out of town. So they are both in town on the 10th and that is when I will say “hasta la vista, baby” to my rack.
Today was an exhausting day. Although before I get rolling on this post, I must write a disclaimer that I’m currently under the influence of a Brandon’s Diner comfort food dinner with an Ativan chaser. This post could go anywhere.
As I said, today was an exhausting day. I started at Norris Cancer Center at 9am and ended at 3ish – give or take 1/2 hour for lunch. I had the following:
1. Chest Xray – this was no big deal. Although I forgot to wear a non-wired bra and chose the one with the bling on the front instead. The xray guy asked me if I had a bra on and I just automatically did the “unhook and slide out the sleeve” maneuver. He was like “oh, I guess not”. Did the xray and then he high tailed it out of there for a few minutes so that I could get re-dressed. That’s one funny thing I’ve noticed about the doctors. They’ll have their hands all over my breasts to find lumps and things but then act all shy and leave the room so I can put my shirt back on. Uhh, HELLO? I think modesty went out the window a few months ago.
Seriously, it’s almost instinct to take off my top now when someone asks me how I’m doing.
Show me your tumor, I’ll show you mine!
2. Labs – Had labs. I went in only expecting to have my normal blood work, transfusion blood work and some thyroid tests. Next thing I know they are setting up 7 FREAKING vials. And a pee cup. Now all of this new medicine has me cranky and acting like Sophia from the “Golden Girls” so I’m all “Who the
hell FUCK ordered that?” Well apparently it’s a pre-op thing I was never notified about. Luckily, Norris has bathrooms hidden about where it is a one person only bathroom with a lock on the door and lots of counter space. Except by the toilet. The only thing by the toilet was the toilet paper holder which was not perfectly flat on top, just slightly rounded. So I started off fine, set up paper towels on the top of the TP holder, used the wipes provided, peed into the cup and then, because there was nowhere else, I had to put the pee cup on the paper towel on the slightly rounded TP holder while I finished my business.
Have you ever tried going to the bathroom with one eye on a cup of pee that is delicately balanced on a TP holder, metaphysically willing it to stay upright while pulling paper out of said holder while also issuing SOS prayers to God that you don’t have to spend the rest of the day soaked in your own urine?
Ugh. At least it wasn’t a stool sample.
3. Next up was the hematologist. Well, not really the hematologist, but her Nurse Practitioner, Kristin. Kristin is awesome. Hematologist is out this week so Kristin and I went over my labs. Nothing to write home about – my white cells still don’t exist, my platelets are low and my hemoglobin is low enough that I’m getting 2 units of blood this Friday. My birthday. How much does that suck? Anyway, we talked about some of the blood issues related to surgery and she was with me for just over an hour.
One thing about Norris, they spend as much time with you as they need. I’ve had appointments that lasted 15 minutes and some that lasted over 2 hours. That place is amazing!
4. Finally, fourth and goal, is my appointment with my surgeon. I had a TON of questions to ask and she answered all of them and more. I’ve been super anxious about the process of surgery and what happens when, and she just relieved my mind so much. I’m not exactly looking forward to it but I’m not freaking out. It looks like she might keep me for 48 hours in case I need more blood or platelets after surgery. She is putting a waterproof dressing over my incision/stitches so that I’m able to take a quick shower as soon as the next day (I just can’t get any kind of soap on the site). She thinks that I’ll be down and super fatigued for a week or two but I can start going on quick errands (not driving) or short walks as soon as I feel up to it. YAY! I need to stop reading the internet because there are some horror stories out there.
What I’m really excited about? The second Hobbit movie comes out on the 12th, so I might possibly be able to see it the following week! YAY!
There is also a little problem with my veins. Because I am having lymph nodes taken from my left arm, I can’t really use it for any kind of blood draws or IVs after surgery for a really long time. My right arm is the arm that makes nurses scream and cry because my veins are super small and sucky. The size IV that the anesthesiologist needs for surgery will not fit in my arm vein. So sometime prior to surgery, I have to have a small procedure to put a port in. This is a small circular thing that sits underneath the skin near your collarbone and has a small tube that is attached to an artery. After I get this placed, the nurse can use a special needle to access the port and I will get blood draws and transfusions through this from now on. Much more comfortable than having my arm accessed all the time. The plan is that during surgery, they will use the port to put me to sleep and then place a central line at my neck for more access points. When I’m discharged from the hospital, they will pull the central line out. It sounds worse than it is. From what I’ve been told. It could totally suck. I’ll let you know in a month.
So that’s another thing to schedule.
Other things that are happening cancer wise:
- Another appointment with my hematologist
- Labs up the ying yang.
- Possible switch out of some of my meds.
- Consultation with an anesthesiologist to get cleared for surgery.
- At least two more transfusions.
- Platelet transfusions and blood transfusions the day before surgery
- Shots of Neupogen (helps the white cells), 1 shot a day for the 5 days prior to surgery. (I’m doing this at home).
- Oh, and I have to figure out which of the new meds is causing my blood sugars to go crazy and get them sugars down to normal or my surgery will be postponed again until after the new year. No pressure though.
This is all just from today. ITS CRAZY!!!
Just to let you all know: I’m having some very crappy side effects of the new medications I’m on. I’m working with the doctors to either change the dose or the actual medication. One of the worst side effects is that I feel like I’m going mental – I’ll be super happy, then crying my eyes out, then ready to throw something out the window – and this all can happen in the same 15 minute time frame. Part of it as well is the whole “shut down all the hormones” thing I have to do to keep the cancer away. So if yu email me, text me, call me, etc… and I don’t respond right away… I’m probably having a moment. I do appreciate your support and love you all so much!!
1. FIGHT ON USC! BEAT THE FARM!!!
2. Thank you for all the prayers for my grandma. She had forgotten how to eat on Tuesday until my aunt showed her how, but today she was eating and drinking much better. She also got up and walked for 5 tiny steps.
3. I have a few other people that need help right now:
- My Aunt’s ex-husband, the father of her three kids, passed away in his sleep quite unexpectedly this afternoon and my cousins are devastated.
- A man I sometimes end up sharing the counter at Brandon’s Diner, his wife has spent much of the last month in the hospital recovering from a 10 hour surgery to get rid of cancerous tumors.
- My mom’s cousin (96) health is declining fast.
If you could lift these folks up with prayers/good thoughts/however you do it, I would appreciate it!!!
A parting shot of where I will be this weekend for my birthday:
This has been a hell of a week.
Monday was Breast MRI day. I was super nervous but had been taking Ativan all weekend and popped another one that morning. I was practically asleep on the way to USC. The MRI wasn’t done at USC Norris, it was done across the street at the USC imaging center. The staff there weren’t as helpful and friendly as the staff where the PET/CT was done but they were friendly enough that I felt comfortable.
Since my capris didn’t have any metal in them I could wear them in the machine but had to change into a gown (open in the front please) for my top half. Makes sense since that was the area to be MRI’d. After I changed, they stuck stickers with things on them (I think they were locators) where my tumor is and then put an IV in me for the part of the scan where the contrast media is used. I was a little pissy because they stuck a 22g needle into me which are very uncomfortable (my veins are super small). I lobbied for a 24g (what I always use and is smaller than a 22g) and they gave me some crap about the needle needing to be large enough to let the contrast media through. I call BS on this because I have freaking blood product go through a 24g and there is no issue. But anyway, she stuck me and got it in.
A few posts ago, I drew a picture of a breast MRI:
It pretty much worked this way. Pretty much.
First off, in the USC MRI machine, you are laying almost flat on your stomach, maybe inclined at 4 inches. The boobsling is about 1 inch lower than the incline so instead of leaning comfortably up with your chest down, you are leaning up, then forced to hunch your neck and shoulders down so your boobs fit into the sling. The sling is more like a two plastic measuring cups with magnets all over the outside. Think of it looking like one of those two bowl dog/cat feeders that are on a stand (for optimal digestion!). Then your chin and eyes are resting (HA!) on some pads. You can’t look forward or up or your position will change and you have to be repositioned. They get mad at you if that happens. (believe me!) Your arms are in front of you and you have the panic button.
Then you are told not to move for 30 minutes.
Well, history repeated itself and before they got started I asked if I could look up. They said sure (they were still positioning me) and so I did. Why, oh WHY do I do this? Of course I had a panic attack and had to actually leave the MRI room. In their pleasantness, they told me that I had to come back and tell them if I was going through with it because they “had a schedule to keep, you know!”. Fuckers.
Excuse my language.
So I got back in and got it done. And have been paying for it ever since!
Having aplastic anemia makes it hard to exercise which leads to severe muscle weakness. Because of this, the muscles in my lower back are non-existent. Having this exam has led to the following:
1. Excruciating lower back pain. I almost has to stop the MRI because my back was SCREAMING in pain. Luckily as I was getting ready to push the button, they popped in and told me I was done.
2. Huge pain in my shoulders and neck. From holding the hunched-over position for that long.
3. A week-long pre-migraine
4. Feeling like my ribs were broken for 4 days. This goes back to the boobsling being lower than the thing you are resting on. You have to basically hold the area directly under your breasts on a sharp edge while you are hunched over and this is so painful. Just awful.
To add insult to injury, apparently I was breathing too much (breathing helps me live! It also helps me prevent panic attacks). The fuckers in the booth told me that the images were blurry and I may have to redo it if the radiologist can’t read it. Uhm. NO! My body is just recovering. I couldn’t get out of there fast enough.
Mom drove me home and we went to Brandon’s for lunch. mmmm. Then we went home and I basically passed out until later that night. Ate some dinner. Passed out again.
When I got “The Fever.”
Again, because of the Aplastic Anemia, I have basically no white cells. My white cell count is 0.7 (normal is 3.5 – 10) but the important sub-white cell count, neutrophils, was at 0.2. Neutrophils are the things that power your white cells. Anything under 0.4 is life threatening. You are susceptible to all kinds of infections. This is called being Neutropenic. Things that may take a normal person a day or so to get over could take someone neutropenic a week or month to get over. The flu or high fever could kill as without the white cells, the infection could go septic. My protocol is if my temperature is 100.4 or above, I’m to page my doctor and get to USC Norris as quickly as possible.
5:00 am: I wake up and my body feels like I’m on fire but I can’t get warm. Check my temperature and I’m 100.6. I start drinking a lot of water and put a washcloth to my head to see if I can get it below the magic 100.4
5:30am: Feel like crap. Take my temp again: 101.8. So. Not. Good. Rouse mom out of bed. Vomit a little. Call the hospital and start getting ready to leave. You know I feel like hell when I pack an overnight bag. I had never in my life stayed overnight at a hospital and I felt that that record was going to end.
After many phone calls back and forth to the hospital, we arrive around 9:30am (thank you very much LA traffic!) and I get to bypass admitting and go straight to the day hospital. My IV gets put in (a 24g!) and I start on antibiotics and get a ton of labs taken. My NP stops by around 10:30am and while we are talking, I throw up like I have never thrown up before. I still have broken blood vessels in my eyes. It was so violent that I dislodged the IV and ended up with huge swelling on my right arm where the IV poked through. My nurse took out the IV and put pressure & a bandage in the area. While I was waiting for her to come back and put another IV in, I looked at the bandage and it was soaked through with blood. I screamed like a girl and moved my arm which then sprayed blood all over my shirt (that also had some vomit on it – shirt = trash). We got it all fixed and my nurse was able to put an IV in an unused vein that ended up being an AWESOME place!
About 15 minutes after this, my brother shows up. Leave it to him to miss the action!
Then the day hospital gave me hospital gowns (one for the front, one for the back) to change into. Now, I have zero experience with hospital gowns, so when I grabbed one to put on, I found myself with a heavy, fabric piece of origami that was supposed to cover me. WTF? I had to call mom in and together we managed to get these on. I got into a wheelchair and my brother found himself being my chauffeur. I went up and got a Chest Xray and then made my way to my room on the 3rd floor as I was being admitted for observation.
All through this my temperature was hovering at the 101 level.
Because I’m neutropenic, I was put into a special room that had a HEPA filter. It had been a double room but the hospital made it into a private room. So it had a bed, couch, chair, huge bathroom and a flat screen HDTV. It was nicer than some hotels I’ve been in. Everyone coming in had to wear a mask (including my mom & brother). The hospital gown was so big and bulky that I ended up changing into my own pjs. I also talked my way into them allowing me to give myself my own insulin and shots.
Dietary there is apparently just like other hospitals. I am on a restricted diabetes/neutropenic diet so my choices weren’t great. I finally just wrote “Turkey Sandwich on Wheat with canned peaches” on my menus. I was seriously uncomfortable in the bed so at around 1am, I took up residence on the couch. I put on Julie & Julia from the available movies and managed to get a few hours of sleep. Then they came in to bug me again. I put on Grown Ups and fell asleep again. At 3am-ish, my fever broke and I started feeling much better. So much better in fact that when the Attending physician came on rounds, I had my laptop, cell phone and snacks/water all around me. She was not sure I was going home when I told her that I WOULD be going home that day. So I was sprung at 3:30pm. Just in time for LA Traffic!
I don’t have anything to compare it to, but it is a great hospital and the staff there are wonderful! Except for one resident who I had to school. My brother & mom were wondering who was the patient and who was the doctor. I was unaware of the whole “needing to measure output with the measuring cup in the toilet” so I probably screwed up their statistics when I took it out 🙂 Gross.
While I was there I had: 4 infusions of antibiotics, 2 units of blood, 5 huge ass potassium pills, and a four hour infusion of magnesium.
So I got home Wednesday evening. I’m still not sleeping well and feel out of sorts. Plus I have to do the following:
1. Wear masks everywhere. Other people’s homes included.
2. No one can be in my house if they are/recently have been sick or around a sick person.
3. No eating out. At all. I am allowing myself iced tea from drive throughs or Starbucks but I’m starting to not like it anymore anyway.
4. I have to have a diabetic/neutropenic diet. So 4 carbs at each meal (1 grain, 1 dairy, 1 fruit, +1 other). I can’t eat fresh fruits or vegetables, they have to be vacuum sealed, frozen or canned. I have to eat cooked food when it’s hot and cold food when it is cold – if either gets to room temperature, I have to toss it. No leftovers. No reheated food. No buffet food. No soft cheeses or sliced cheese or meats from the deli counter. So basically, I shouldn’t eat anything that isn’t cooked by me or my mom (or approved relatives) and most of it has to be processed, pre-packaged, and unopened unless by me. PAIN IN THE ASS!!!
I’ve been eating a lot of lean cuisines and peach cups.
I have had the best blood sugars ever and I’ve lost 4lbs this week. So that is a plus!
On the possibly negative side, I have a feeling that this neutropenic fever incident will remove surgery from my list of options for treating the cancer. This would really suck as the cancer I have is a surgical cancer. So instead of curing it, we would be just containing it. This is just my opinion and my doctors could totally disagree with me.
Next up are appointments with my hematologist and BC surgeon next Wednesday and we should know more then.
If you made it through this entire post – you deserve a cheer!