#14 January 8-10

Friday, Chemo Day 11 – I woke up at 3 a.m. wide awake. I try to sleep again, but it’s no go. I finally just get up, grab something to drink, and head to the living room and mess around on the computer until the rest of the house is awake.

The bone pain seems slightly less this morning as I get ready to get another Skele-gro injection. My nurse practitioner emails me the final result on my neutrophils that didn’t even show on the auto count. She thought they might be around 200. They were 60. She says that I’m really neutropenic and tells me to be sure and go to the ER if I spike another fever while on the oral antibiotic.

I’m definitely beginning to feel taste bud changes, and my lunch seems like so much cardboard. I eventually spit out what I was trying to chew, and give up.

 I feel pretty good walking through the hospital halls to get to the infusion center where Skele-gro will again be put into my body. Injection is fast and relatively painless. We head back home, and other than just being really fatigued, I’m OK until the late afternoon. I can’t eat much of my dinner either, and supplement it with some toast. I start to have the “flu-like symptoms” which I assume are the side-effects of this latest shot. I take my temperature, and I’m not running one, so about 7 p.m., I feel so bad, I just take my antibiotic and a couple of Tylenol and head to bed.

I can’t seem get warm even with the heated mattress pad on. Finally, as I seem to be thawing out, I then start to feel flushed. I take my temperature and it’s up - 99 degrees, but nothing to worry about. I keep feeling worse, and keep taking my temperature watching it slowly rise. Eventually, at 8 p.m., an hour after taking the Tylenol, it hits 100, and I call the Dr. I know my oncologist is out of town, so I ask for the one taking her calls. I wait, and wait, and don’t hear back until I make the decision I need to go to the ER. I get dressed, and finally hear back from a nurse who tells me that without that extra .4 of a degree, I can’t be considered having a fever, I should just stay home, and why did I take Tylenol anyway since I’ve now messed up all the readings?

I have to admit that I wasn’t very nice when I told her that I had been told to take the Tylenol for the Skele-grow, and that .4 of a degree did not matter since I know how I feel, and I feel like crap, and I was going to the ER anyway! So there!

We had called my son to drive us in to the ER at U of C since my husband cannot drive at night. Why do these things always happen at night or on the weekend? I could have gone to a closer ER, but they wouldn’t have had access to all my previous blood work for comparison, and it was only about 15 minutes further.

About 5 minutes away from the ER, my oncologist calls. She had just gotten back into town and heard I was in distress. She seconds my opinion to go to the ER, and says she will call and let them know that I’m coming. It’s amazing how much better that makes me feel.

We get to the ER about 9:30 p.m. I put on a mask since I know how susceptible I am to infections, and of course the ER is full of people with who knows what kind of contagions. We sit, and we sit, and we sit. I’m feeling horrible. I’m now clammy instead of feverish, so am questioning my need to have come to the ER in the first place. I finally tell my husband that if they don’t call me by 11 p.m., I’m going home. 

11 comes, and I go tell the front desk that I’m leaving. They tell me a room is being cleaned for me, and surely I can wait just a little longer. I acquiesce and sit for another 30 minutes before I am finally called back.

They have to take blood and pee and x-ray my chest and ask the same questions numerous times. They do start IV antibiotics. Finally, an on call Dr. from oncology comes, and I ask her how much longer it will be. She says, “They didn’t tell you? You’re being admitted. We’re just waiting for transport.” 

I gratefully say goodbye to my husband and have him thank my poor son who’s been in the waiting room all this time. They leave, transport arrives and I am in a room. It’s 2:30 a.m.

Of course, I then have to have more nurse things done, and it’s close to 3 a.m. before I am able to close my eyes. I’ve been up almost 24 hours.

Saturday, Chemo Day 12 – During the night, I begin to feel worse than I did when I arrived at my room. I am awakened at regular intervals for changes of IV fluids and antibiotics, taking of vitals, etc. I cannot seem to get comfortable on the bed. I’m cold, then I’m hot. Mostly, I’m just miserable. I get very little sleep.

I turn the TV on the HGTV channel, and they’re running a “Flip or Flop” marathon. I can’t seem to concentrate on reading, so just keep it on all day, occasionally dozing off for a bit.

The hospitalist arrives mid-morning, and I almost think that I’m going to go home. He’s a little hesitant, but is thinking it might be OK if my oncologist agrees, until he notices one of my labs is still abnormal. Not going home today.

I haven’t eaten anything but some saltines, so I decide to order some lunch after the Dr. leaves. When it comes, I feel very hungry, and it tastes good. Then, about halfway through, I just can’t eat anything else. I keep drinking juice to keep my calorie level up, and I’m drinking lots of water as well.

My husband arrives around noon to bring me stuff I desperately need. It’s so dry in the hospital that my nose and lips are cracking. He brings my nasal gel and Carmax which is so wonderful. Just after he arrives, my oncologist also comes in. She’s glad that I’m doing better, but is concerned about the redness around my port. I tell her that it was noticed on Thursday when I went in for my first Neupogen shot. It doesn’t hurt, only seems slightly itchy, but that could be the bandage holding the IV in. She says she hopes they don't have to remove it. Remove it!?! Are you kidding me? After all I went through to get it in? Step right up, ladies and gentlemen, the Pity Party is beginning.

I send my husband home soon, since a snow storm is on its way. He gets back home before the snow is too thick. I see it swirling around the windows, and since I’m on the 10^th floor, it’s like I’m in the middle of a snow globe.

I try to eat dinner with about the same result that I had at lunch. I am feeling much better than I was in the morning, and I try to keep myself awake so I’ll sleep tonight. “Flip or Flop” turns into the “Property Brothers” and I manage to stay awake until the 10 p.m. news comes on. I turn off the light and fall deeply asleep until the nurse comes in at 10:30. Although I’m sure she knocked and called my name, since they always do, I didn’t wake until she was standing right next to me. Startled awake, I should say.

I slip back to sleep for about an hour, when the vitals must be taken, so awake again. At some point around 2 a.m., I give up trying to sleep and turn on the TV – nothing but infomercials. Back to sleeping, waking, blood taking – rinse, repeat.

Sunday, Chemo Day 13- Finally, at 6 a.m., I give up, turn on the news, and order breakfast. I feel pretty good now, just excessively dry, in need of a shower and a good bed with undisturbed rest. Breakfast arrives, and I can still only eat about half. I decide to prepare myself for going home, so I put on my shoes, clean up as much as possible, and sit in the chair instead of the bed. The snow has disappeared, the skies are clear and the sun is shining. I have a great view of downtown Chicago from my room which I wasn’t able to see before today because of the weather.

My husband decides to come up since I’m pretty sure I’ll be able to come home. The one blood test they were waiting on, is now in the normal range, so I can’t see why not.  Finally the hospitalist comes, agrees that everything looks good, and says he’ll put in the discharge. He does ask me about taking magnesium. I normally take a magnesium supplement, but of course, while at the hospital, I haven’t. I tell him that, and he says something about giving me some, and then he says, “Or you can just take it when you get home.”

My husband has decided to wait downstairs in the car since we assume it won’t be long. I wait, and wait, and finally put in a nurse call to see if the discharge papers are in. My nurse says she hasn’t gotten them yet. Dang! Wait some more. 

The nurse comes in and says the hospitalist put in for something called a “magnesium read” (if I heard her correctly,) which takes two hours. I say “Nooooo! We discussed this. Can’t you get in touch with him?” She said she had a page in for him, but had not heard back. Then she says (God Love Her!) “You can refuse it.” I jump on that immediately. Refused it is!

She comes back with the paraphernalia to remove the port access, and after completing all the cleaning of the area (and she was much more thorough than anyone else who’s ever accessed my port,) she takes the needles out, and a small amount of serous drainage drips down and onto my gown. She says, “Oh, Babycakes, I don’t think you’re going home. Nothing is supposed to some out of your port.” She contacts the hospitalist and he tells her to re-access and take cultures. Before she re-acesses the port, she tries to take a swab of the fluid from the port, but nothing will come out. She thinks it looks less red now.

I am desolate. I call my husband, and he says he’ll come on up. I cry. All I want to do is go home. When the nurse comes back in, I tell her that I don’t see why I can’t go ahead and come home. I don’t feel I need to stay there just to wait on the cultures. If they need me to come back in, I’ll come back. I’m begging now. ♬Beggin' you, let me go home now, baby♬

I don’t know what she did, but she managed to talk them into letting me come home! O frabjous day! I'm supposed to watch my temperature and the redness around my port, and if anything else come out of it, I must come back in. I agree to anything. Where do I sign?

Husband leaves to get the car, I quickly get out of the gown, put on my coat, and I’m outta there! Since it’s now 2:30, and I haven’t had lunch, we make a stop at my favorite fast food –Culver’s. I have been lusting for their pot roast sandwich. I get fries with it, but the fries taste really funny to me, so I don’t eat many. The pot roast sandwich however, is heaven. I am able to eat the whole thing! We even split a flavor of the day – chocolate covered strawberries!

As soon as I get home, the dogs are all over me, and I am so glad to see them as well. I still feel pretty tired, so I basically cuddle on the sofa with the dogs.

That night, I go to be about 8 p.m. and sleep the hardest sleep. Even though I have to get up a couple of times during the night to get more to drink or reapply dry mouth stuff, it’s so good to be home!

#13 January 5-7

Tuesday, Chemo Day 8 – Today was a pretty good day. We had given our tickets to see Carol King’s Beautiful tonight to our son and DIL, and I was almost regretting doing that since I was feeling so good this morning. It was a good decision; however, because my stamina tanked today big time. Just the slightest exertion, and I was through. (Side note: chemo brain alert – took me two minutes to think of the word exertion. I knew it began with an e, but was lost after that.)

My husband had picked up our Seattle Sutton yesterday to get us started back on our healthy eating, and I was glad to see it back. That’s just one more decision that does not need to be made. I’m sure that eating better will help get my entire gastric system back on track even more than it is.

I’m still dealing with the achies, and I keep taking my temperature to make sure that this low period of my immune system hasn’t handed me some sort of infection. It has been running somewhat higher, and tonight when I went to bed, it was 99.9. That was scary since 100.4 is the number where (according to all my printed instructions) I must Contact your health care provider immediately, day or night! Of course, this is not something I want to do in the middle of the night. I go to sleep, but wake numerous times in the night checking my temperature.

Wednesday, Chemo Day 9 – I send an email to my nurse practitioner telling her about the slow, but steady rise in my temperature, and wondering if this is a trend. She reminds me that 100.4 is the standard to worry about, so not to worry. Right.

I make an appointment today with a wig salon for Thursday. They specialize in wigs for cancer patients, and even though Medicare will not approve, my secondary insurance will cover 75%. A small percentage of cancer patients do not have all their hair return after chemo. I don’t know that I’ll be in that group, but think it’s a good idea to get covered (pun intended) while I can.

I spend a frustrating amount of time talking to my secondary insurance about the coverage. Since I have to front the money, I want to be sure to get reimbursed. Apparently even though they and I both know that Medicare does not cover wigs, I still have to jump through the hoops with Medicare first, get them to say they don’t cover it, and then apply with my secondary. What a waste of effort.

I’m still enormously tired, can hardly get up and down the hall without having to sit down to rest. At least I’m not dealing with pain – there’s a positive! In the afternoon, I lie exhausted on the sofa, both of the dogs are lying on my lap, I’m covered with my Harry Potter blanket, and I cannot get warm. I have my husband check the thermostat – surely it’s set on 60, right? Nope. I take my temperature – 99.9. I drift off to sleep.

When I wake, I feel some better, not cold anyway, and I sit at the computer for a while. My face feels flushed. I decide to take my temperature again. There it is – the magic 100.4.

I page my oncologist who gets right back with me. She’s at the airport about to board a plane. She says I have two possibilities (1) go into the ER, (2) she’ll send out an antibiotic to get me started, and I go to the ER if the temperature comes back. I ask which she recommends, and she thinks the oral antibiotic will be good since I’m so close to the “coming back” time of my chemo bell curve. She also says the ER has been very busy that day, and likely I would wind up sitting there for a long time. I vote for the antibiotic.

I can take Tylenol for the fever (hadn’t done so since I didn’t want to mask it,) and my husband runs down to the pharmacy to pick up the script. The Tylenol makes me comfortable, the antibiotic arrives, and it’s the one my brother was taking for his pneumonia (he had just told me about this) which has a side effect of (I am not making this up,) exploding tendons.  Actually in medicalese it’s “tendon rupture or swelling.”

Oh well, take it anyway. I sleep well and deeply until about 11:30 p.m. when I wake, take my temp, and it’s 99.9. I manage to go back to sleep until 4 a.m. when temp taking is done again with the same result. At this point, knowing my oncologist is out of town, I email my nurse with the background and wonder if maybe I should come in for a check on Thursday. Then I wait.

Thursday Chemo Day 10 – Although my temp is still elevated, it’s not in the bad area, so I wait to hear from my nurse. I’m afraid to take Tylenol again for fear of masking, so I don’t. I email my wig appointment that I’ll have to cancel since I don’t know as yet whether or not I’m going to have to go to the hospital.

My nurse calls me about 8 a.m. and suggests it would be a good idea to come in and get some lab work done, and a checkup. I’m all over that. The worrying about what is happening to my body is worse than what’s happening to my body right now.

We troop off to the hospital. My husband drives since I’m so weak, I don’t think I can do it. They take samples of my blood from my port and my arm since my port might be infected. I also have to do a urine sample in case my bladder or kidneys are the problem. I have to wait a bit since I’m a “work-in” appointment, but eventually my nurse calls me in.

Turns out it’s a good thing I came in. My white blood count is low overall, but the neutrophils (a type of white blood cell) don't even show up on the auto count. The nurse explains they will do a manual count where they might show up, but it will probably be low.

I think of what I’ve read-“If a patient has a fever and low neutrophil count (less than 500/mm3) (febrile neutropenia) they are at risk for infection they may be hospitalized, monitored and receive antibiotics.  The concern is that an infection can develop in the blood and lead to a life-threatening condition - sepsis.  So the patient is admitted to receive antibiotics until the fever resolves, and neutrophils increase to safe levels - if no source of infection is found.” A little knowledge is a dangerous thing.

Thank goodness, they don’t think I need to be hospitalized. My nurse has been emailing my oncologist with the lab results, and my oncologist thinks that I will be OK with a Neupogen shot today and tomorrow.

You’ve probably seen the TV ads for Neulasta (don’t ask me about Pharma ads!) which is the same thing, only different. Neulasta is usually given the day after chemo to prevent neutropenia from happening. I did not have a Nuelasta shot after my chemo. I don't know if that was an insurance thing, or just a wait and see how chemo affects me choice. They could give me a Neulasta shot today, but since there has to be a least 15 days between a Neulasta shot and chemo, that would totally screw up all the rest of my chemo sessions. The Neupogen does not have that time restriction, so I can stay on the original schedule.


Neupogen is a bone marrow stimulant (think Skele-gro from Harry Potter.)  The fun thing about both shots are the side effects of bone pain which is why they both will hereafter be referred to as Skele-gro.
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After the shot is administered, and I get the appointment for one tomorrow, it’s after 1 p.m., and my fragile stomach has been empty way too long. We opt to share a stir-fry at the hospital café instead of waiting to eat at home. It tastes really good.

The whole rest of the day is resting, since stamina is still kaput. Sometime in the early evening, I begin to feel the Skele-gro effects – just twinges at first, here and there, but then it decides to settle in my pelvic girdle – those nice wide bones where it can do the most damage . . . I mean good. By the time I toddle off to bed, I can barely walk. It feels as if my whole lower torso is on a ball joint, and every time it moves, it hurts. Eventually the ibuprofen takes hold, and I drift off to a very hard sleep that really does knit "up the raveled sleeve of care." You go, Will.

#12 Dec. 29-Jan. 4

 The first week of Chemo Side Effects

I thought that keeping a log of what I was going through could be valuable. I can look at it next go round, and maybe have an idea of what is coming up. Also, anyone who is reading this blog who is going through Chemo might find it informative. 

The problem is that Chemo is different for everyone. I may or may not feel these same side effects next session. Someone else with a different body make-up or different chemicals used in their therapy may have completely different reactions. It's a crap shoot.

Tuesday, Chemo Day 1 – Felt really good today – probably the steroid coursing through my veins had something to do with it. Taking the anti-nausea pill Zofran and a stool softener since unfortunately, the Zofran causes constipation. Got some errands done, and took the rest of the day off.

Wednesday, Chemo Day 2 – Again, no side effects with the exception of slight gastric cramping. The Zofran is evidently running ahead of the stool softener as nothing of note has moved forward since Monday. Maybe not quite as much energy as yesterday. I did have some knee pain in the evening which I thought was due to improper placement of the laptop while I was on the computer.

Thursday, Chemo Day 3 – It wasn’t the laptop.

My left knee has been stabbing me repeatedly through the night no matter what position I put it in. I feel achy all over, but especially my knee. My brain feels fuzzy, my teeth hurt, and overall, I feel just rotten.

I haven’t been taking my normal Tylenol in the a.m. for my arthritis because the infusion nurse had said something about not masking a temperature, so I send an email to all my doctors and nurses (hoping that one of them will be on call on New Year’s Eve) asking for some help. As I finish the email, I get hit with a wave of dizziness. I manage to dump myself into the sofa and ask my husband to bring me a cold cloth for my head which helps immeasurably with the dizziness.

I’m still having the intestinal cramping, so I decided to add Miralax to my breakfast OJ, and I wait to hear from my medical team. I get two automatic replies that two of the four are out of the office until after New Year’s which is understandable. I do have a 24/7 number to call if needed, but I still hope to hear from my team.

Eventually I check my email and my blessed oncologist has responded telling me how sorry she is that I’m feeling so bad, and that I can certainly take Tylenol and even the Tylenol 3 if necessary to get past this pain. She says that it could be a side effect of the Taxotere, and also the “Dex” crash as well. She even gives the OK to take another “Dex” pill, but I choose not to do that. Not being a professional athlete, I don’t want to take anymore steroids than I have to.

While waiting for the response, I finally have some lower GI action, and that takes one worry off the table. I take the two arthritis strength Tylenol and wait for it to take effect. My husband also digs out my old “Iceman” ice machine which I used for my total knee replacement back in 2013. Between the icing and the Tylenol, the stabbing pains eventually subside, and I am left only with an overall “flu-like” feeling which is doable. The rest of the day is just feeling like I’m about the get the flu. My nurse does call me to check on how I’m doing. It’s really nice to be able to be touch with my team even on a holiday.

My poor dog doesn’t understand why I can’t have her in my lap, but my body is so touchy, that even her slight weight makes me hurt. I find that the Tylenol runs out well before the 8 hours, but I take some more anyway. I’m watching how much I’m consuming per day, so I won’t overdo it. My lower GI is still causing some problems, but I’m almost afraid that it might be the diarrhea on its way.

It’s New Year’s Eve and we head to bed at 9.30 p.m. – it’s the new midnight if you’re dealing with chemo side effects, and I sleep fairly well. I wake a couple of times in the night, but not with the pain of the previous evening.

Friday, Chemo Day 4 – I feel much better than yesterday, still achy, but now with a new uneasy feeling in my stomach. I’m continuing to take the anti-nausea and Tylenol, in fact I get out of bed at 5:30 a.m. to take it, and then return to bed until I begin to feel some better. 

When I do get up, I find that the most pain is now in my feet – go figure. I suck on a couple of popsicles which help with the uneasy stomach, and eventually chew on a couple of crackers. I have a different kind of anti-nausea prescription which I haven’t taken yet called Compazine which I can take if I have break-through nausea, but don’t feel it’s necessary yet.

I step out on a limb and ask for biscuits and gravy for breakfast. I know that doesn’t sound like the best choice for an edgy stomach, but something about the comfort of it sounds really good. I am a Southern girl, and biscuits and gravy are like mother’s milk. My husband uses a mix for the gravy, so it’s not as “fat” as one might think, and when I eat it, I feel amazingly better.

I do OK until the Tylenol from early in the morning begins to wear off. I don’t want to take more Tylenol at this time, so I take an ibuprofen hoping that will step in with the achies. The ibuprofen helps. I’m writing all my meds down now, so I don’t OD on Tylenol.

The diarrhea never showed up, but I didn’t take stool softener or Miralax today. I did however, eat black-eyed peas and cornbread for both lunch and dinner. My husband cooked them with my guidance, and they were good! Lots of fiber in black-eyed peas, so maybe that will help.

Tired, but couldn’t sleep when I tried to take a nap. I did however, go to bed early, and slept fairly well.

Saturday, Chemo Day 5 – joint pain is better, but then I'm also taking Tylenol arthritis pain and ibuprofen. No major nausea - still taking Zofran, just feeling fragile. Tired, very tired. Tongue looked whitish this am, but then I forgot to brush it and use the Biotene mouthwash before bed last night, so maybe it's OK.

This may be TMI for some of you, but I still can't get my lower GI back on track. I thought for a while I was past the constipation and headed for diarrhea, so quit the stool softener. Back to stool softener today. I get intestinal cramping, and then pass a little bit, but I know there’s more in there. Come on black-eyed peas!

Someone on the breastcancer.org thread dealing with constipation posted this link, and it’s funny https://www.youtube.com/watch?v=8cNRkQJcnUk

For a little while in the afternoon, I had no pains. I lay back in the recliner with a dog on my lap and did not hurt. It was really nice

Sunday, Chemo Day 6 – Really, really tired today. I was up many times during the night with cramping which would produce gas and a small amount of stool. Sllloooowwwwlllyyy I am getting my intestines to empty. I stopped taking the Zofran last night, and just feel fragile, not queasy. Finally I decided to retire to the bedroom, close the door and try to nap.I slept like the dead, but feel a whole lot better than I did.Tired, tired, tired of intestinal cramps!

A friend of mine in Chicago who was diagnosed with breast cancer just before I, was walking back home after her diagnosis still trying to process what had happened when she came across this written on the sidewalk. 

The next day it was gone. This made me feel better.

Monday, Chemo Day 7 – – The last couple of days have just been awful with abdominal cramping. Finally, I emailed my nurse about taking Imodium. I wasn't sure I should take it since I wasn't really having diarrhea, just softish stool that really hurt. 

She emailed me right back and said it was the Taxotere, and I should take the Imodium. Wow, what a difference. One cramp after taking the first pill. Took another two hours later and slept all night without having to go to the bathroom. Passed stool without pain in the morning. I feel like I've returned from the dead!