#15 January 11-17

Monday, Chemo Day 14- I gingerly remove the dressing from my port this morning, and with a sigh of relief, see that it is dry.  My port still looks reddish, but not as much as in the hospital, so that’s an improvement.

Today I also notice that my left arm definitely feel somewhat swollen. I shoot off an email to my lymphedema therapist, and ask if there is anything I can do at home (since I do not EVEN want to go back to the hospital at this point) to head this off at the pass. She gets right back with me, and tells me to do some range of motion exercises, and to just hold it up several times a day in order to get the lymph to drain. So now I look like Hermione in potions class waiting for Snape to call on me.

I feel good enough to do some slight housework, folding clothes etc. I’m still taking the oral antibiotic for the next few days. No exploding tendons yet. We got all the Christmas decorations taken down, and packed away in the basement.

My night is not so good. I always read before going to bed until I get sleepy. I felt sleepy, so turned out the light, but could not go to sleep. I changed position, used mental games to quiet my mind etc., nothing worked. Finally, I got up, turned on the TV and started watching and old Gene Kelly/Frank Sinatra film Take Me Out to the Ballgame. The dogs came in to offer their support. At one point, when Gene Kelly was dancing, Sydney sat up and watched with great concentration. Any dog who is a Gene Kelly fan is a friend of mine. I dozed slightly during the film, woke to see the end, and then went back to bed where I was able to sleep again.

Tuesday, Chemo Day 15- Today was a pretty great day. I did not have any of the fatigue which has been dogging me, I was able to catch up on my filing (I hate filing,) and the house cleaners came today. One of my former students had clued me in on a service which provides a once a month cleaning for women going through cancer. Unfortunately, they don’t have anyone in our area which participates, but my husband said, why don’t we get someone to come in while you’re not feeling good. It has been such a blessing. They vacuum, mop, dust, clean the bathroom, change the sheets, etc. So nice not to have to worry about any of those things. I caught up on my blog about my hospital stay, and generally felt fine.

Wednesday, Chemo Day 16- When I took my shower this morning and washed my hair, I could feel hair coming off in my hands, so the end is near. I didn’t notice much in the towel or when I blew it dry, but it definitely feels different. Other than that, I feel pretty good. I’ve been holding my arm up whenever I remember, and I think the swelling has gone down, so that’s a good thing.

Today I have a consult for a wig. My supplemental insurance will pay for 75% of the cost, so I thought it would be a good idea to get a good wig, just in case it all doesn’t come back in. When we drove up to the wig place, construction had the street totally blocked, so my husband had to let me off at the corner, and I walked up. I had sent the owner a couple of pics of me with hair, and she had specially ordered one which was quite a bit brighter red than I’ve been wearing just in case I might like it. I tried on several, including a grey one, since I figure that’s what going to return in the spring. I kept coming back to the red one though. It’s kind of sporty looking, casual, spunky. My husband liked it best so I got it.

While at the wig place, I was talking to the two consultants about my hair coming and, and I reached for a clump, and it came right out without so much as a tussle. I decided to wear the wig out, and while my husband was driving back, I was futzing around with it. My real hair was sticking out a little it the back, so I just tugged slightly, and it came right out. Who needs scissors? I just pulled out all the hair that was sticking out from the wig. I called my hairdresser to tell her the time had come, and I have an appointment on Friday to remove whatever is left by then. I think I’m also going to have her look at the wig for some adjustments as well.

I totally rebelled at lunch and had my husband take me out for lunch. It tasted so good. There was so much that I brought about half of it home, and ate it for supper. It was still good. All the antibiotics hit my lower GI this afternoon, and I had the first real diarrhea that I’ve had. Took some Imodium, and later took some more. No more problems.

Woke up about 3 a.m., could not go back to sleep. Eventually dozed a bit, but I think tomorrow will be a nap day.

Thursday, Chemo Day 17- Feeling really fine today other than the hair fall out, which doesn’t hurt, but is annoying. I don’t even really feel tired in spite of the bad night.

I went to the store with my husband. He shopped in one, and I shopped in the other. My extreme fatigue is gone although I’m not running any marathons yet.

Hair is continuing to drop everywhere. Glad that I have that appointment. Got some chores done around the house.

I have erratic taste problems. Things that tasted good before, not so much now, then things will change. It’s hard to stay with the Seattle Sutton when sometimes, I just can’t handle the meal. My husband is really great though, he’ll eat something that I just can’t stomach, and let me have something else.

Friday, Chemo Day 18- The hair fall out is even more today. The dogs don’t shed this much. Hair is all over my pillow, the collar of my shirt, the bathroom cabinet.

When I go to my hairdresser appointment, she says, “You haven’t lost that much hair!” I grab a strand and pull slightly, and it comes off in my hand. “Oh,” she says.

She’s very good as she begins to shave it off. She’s being very careful not to distress my scalp in any way by taking it off in layers, changing the blade on the hair cutter as the hair gets less and less. At the end I don’t look near as bad as I might have. I still have stubble, a lot of which I find comes off very easily when I shower at home. It feels really funny.

She also works with my new wig. I know that she is not used to dealing with wigs, and so I ask her just to tell me what she thinks it needs, and I can go back to the wig place and get them to do it. She discusses it with another hair stylist at the salon who does do a lot of wigs, and decides to take it on herself. She does a great job of fixing the front the way I wanted it. I always liked the back.

At the end of the appointment, when I usually ask her how much I owe her, she gives me a hug, and says, “This is my feel good present, no charge.” What a gal!

I wear my new wig home, but when I get there, I take it off and put on one of my knitted caps my DIL made me for Christmas. It keeps my head nice and warm. When I sleep, I put on a cotton cap the wig lady gave me which keeps my head warm at night without the bulk of the knitted cap.

Here are my new looks -

 Feel free to vote for your favorite.

Saturday, Chemo Day 19- Another really good day. I love the fact that I feel so good, but I hate knowing it’s all going to be shot down again on Monday. Oh well, three more to go. One step at a time.

I play World of Warcraft today for the first time in weeks and weeks. I love playing WoW, but have not been in the mood at all since my diagnosis. I knock out some quests, and then my husband and I play together for a while. It’s really fun again.

I break ranks again at supper and order pizza and cheesy bread delivered. I pay for it with indigestion during the night, but it was worth it. We freeze the rest for the next insurrection.

Sunday, Chemo Day 20- Another great day. I start my “dex” today to get ready for tomorrow’s infusion. It’s so nice to feel like myself. I had almost forgotten what that felt like. I’ve started working out on my bike to get my stamina back up. The first day I tried, I could only do 2 minutes, and I was out of breath. I’ve now worked up to six. That’s not much, you say, but’s it’s six minutes more than I was doing.

I’m trying to stay on the straight and narrow on my diet, although I did have some crackers off the chart. No nausea, just greed.

It’s gotten incredibly cold here, snow predicted later in the week, although the snow we had since the last infusion (which was mostly sleet,) has melted. That’s OK, I don’t get out much. Husband and I played WoW again trying to do a group quest for 3 with just the 2 of us. Lots of dying, but it was fun.

Infusion tomorrow is on my mind. Here’s hoping it’s no more of a problem than last time. Of course, it’s the days following that are bad.

#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.