Tag Archives: port

Feb. 13.

Cycle 4, Day 3 – Hydration

My Status: Two-thirds of the way through
Mood: Meditative

I’m going to start off with the MOST positive thing to come out of today … I am 66%, aka two-thirds, aka YAHOO, of the way done with my chemo treatments. Feels like I was only half way there just last month… oh, wait, I was. It doesn’t matter. Every little milestone along the chemotherapy highway needs to be celebrated and this is no different. Half way is great because the road ahead is no longer than the road behind, but when the road ahead is shorter than then one behind, it’s even better.

We had day two of the blood not feeding back through the port without a little heparin to unclog it. Hopefully, this is a 4th cycle issue only and doesn’t mean that the port needs to be cleared out or worse. It’s brand new still. But I do “heal” quickly, so it may be that I’m coagulating at the surface too quickly. We shall see what cycles 5 & 6 hold on the port front. For now, I’m not going to worry about it.

Today I sat beside a lady who was on her first bout of chemotherapy, and she had a bit of a rough start. She had an allergic reaction to her course of treatment almost as soon as they started the drip. They quickly got the situation under control, and gave her some water to flush her system before switching to the next drug she had to have. She was very concerned when they mentioned she might not be able to tolerate the drug they felt was best for her condition, but would try a different one. Understandable. Once again, I feel like my experience with chemo was there so I could help another through theirs. She was concerned that she was the only one experiencing pain and chills, so I shared my allergic reaction experience. And when they mentioned they might postpone treatment to allow for all of the reaction to pass, I was able to share my experience with having to wait a week when my liver functions were too high. She was able to take comfort in hearing that someone else had been down a similar road, and was able to calm down so the doctor and nurse could do their jobs a little easier, because she was willing to lie about her symptoms so the chemo wouldn’t be postponed.

On the way home, I shared the experience with Denny and he thought it ridiculous to get worked up over having to wait for the treatment. I mentioned to him, and it is truly the case, that the hardest bump in my chemo journey so far was being told to go home, that we’d try chemo the next week. His response, but it was only a week, and they made you wait so it wouldn’t hurt you. Yes, I understand that from a logical standpoint, and can now be philosophical about it, but at that moment, the emotion was something else entirely.

Caregivers: Please understand, there is not one of us who wants to be in that chair hooked up to a chemo drip. If we had our choice, we’d prefer to be perfectly healthy and living out our lives the way we had planned … without having to use drugs to kill off evil demons in our body. As a consequence, we want the treatments over and done with, so we can get back to the life we want to live. We also don’t hear the postponement statement with the logical part of our brain, we hear it through our emotions. When my treatment was postponed, I heard You’re too sick for chemo. What this woman heard today was not let’s give your body a chance to recuperate and we’ll try again … she heard chemo for you is not possible. And it rocks you to your core. Because as much as we don’t want to be in that chair, we want to be in the chair to get it over with—it’s what is going to give us our lives back. Please allow us to express the emotion of the moments from the bumps in the road without dismissing them from a logical standpoint.

PSA to Women with cellphones: Today, two 21-year-old women were diagnosed with stage 4 breast cancer … the common thread? They both carried their cellphones in their bra. I understand … it’s an easy place to tuck something to give you free hands, or when you’re not carrying a purse, a place to carry the cellphone so it’s not in your pocket. BUY A CASE—strap it on your hip, or carry a purse (something I rarely do). The ability to have both hands free and carry a cell phone by putting it in your bra is not worth the cost of your life. Please don’t do it.

The picture for this post is symbolic for me that the road ahead is shorter. We’re not to the peak yet, but it is in sight and hope is on the horizon.

Tagged: , , , , , , , , , , , , , , , ,

Feb. 12.

Cycle 4, Day 2 – Chemo

My Status: Rested and hubs brought ice cream
Mood: Good

We had a little hiccough in getting started with today’s chemo … two hiccoughs. The first bump occurred with my port. When prepping the port for use, the nurse will first draw blood (and put it back in) to make sure there are no clogs or clots happening. One of the nurses is training to work with the ports because not everyone can work with them. She tried and no blood return. She had the line a little too taut, and the teaching nurse showed her how to do it correctly, but still no blood return. So they shot a little heparin in there and gave me a few minutes and voila, blood return. All in all, no big deal. We’ll see how things go tomorrow.

Interestingly, there was another patient who came in after me, and had the same issue with her port. Her daughter was with her and in her concern kept asking more and more questions about the “blockage”. She was worried, but she was also not allowing her mother to relax, so I quipped that it must be the day for it and explained that my port had the same issue. The daughter laughed and was able to relax after that and her mother finally relaxed as well. Maybe the purpose of my port not behaving was so I could provide perspective for another patient and her family. I was fine and laughing about the little problem so they could relax and gain confidence that the chemo would happen … which it did.

The other hiccough? Dr. Doogie was delayed in his arrival. Why does this matter? Because they cannot start chemo, even the pre-chemo cocktail unless a qualified doctor is there to sign off on it. So I had a couple packets of water going through the line, which gave the nurse a chance to ensure the port was working properly, and we got started a little later than anticipated. But all in all, no big deal on either issue.

Denny was my chauffeur for the day, and since I have chemo at the secondary facility on Wednesday’s under the backup doctor’s overview, there are very few other patients, so he came to the chemo room with me and stayed the full time because the other port-problem patient was the ONLY other patient. This has both good points and bad points. The good? Denny has a chance to feel more involved in the process and that he is there for me. He sees what I’m going through and when I’m calm about things like the blood drawback not working, he doesn’t get all het up and have the questions the other patient’s daughter was expressing—which he would have, had he not been present at the time.

The bad? Oy. I take things with me to do during chemo … otherwise I’d be bored silly, since I can’t seem to sleep, which is what most patients do. Today, I was focused on working on my secret project and making some good headway with it. Before starting on the secret project, I did spend the first hour or so chatting with Denny and the nurses. So I didn’t completely neglect him. When I was ready to work, I put in my headphones, announced I was putting in my headphones, and Denny told the nurse what that meant … I was not to be disturbed. Or as he puts it “I can’t talk to her then.” Here’s the problem … it didn’t stop him from flashing magazines at me and sharing car pictures, etc. For me and interruption to the work is an interruption—whether verbal or non. I was good … I didn’t huff or get angry, I just nodded and went back to work. I would have preferred not to have the interruption.

He is my chauffeur tomorrow as well, but there will likely not be any extra chairs, but I also have covered myself by telling him I’ll bring the Kindle so he can read a book he’s been wanting to read for a while. Any little bit helps.

The picture of the dandelion is two-fold for today. I thought the symbolism of the flower sprouting through decaying wood a metaphor for taking the bad port situation and turning it around for the other patient and her family. The other reason the dandelion is significant is that since not being able to have chemo on my appointed week because my liver enzymes were high, I have been drinking dandelion root tea to help my liver function … and (knock on wood) it is working. Since then, my liver levels have been very good. Dandelions and dandelion root tea is beneficial for more than just the liver as well. Shortly after drinking the tea with positive results, I had a discussion on Facebook with several folks about the benefits, and will link to this article on 11 Health Benefits for additional reading if you’re interested. Briefly, the eleven benefits mentioned are:

    • Digestive Aid
    • Kidney
    • Liver
    • Antioxidants
    • Cancer
    • Diabetes
    • High Blood Pressure
    • Cholesterol
    • Gallbladder
    • Inflammation
    • Immune System

Ultimately, the tea is good for me to help with my digestive system, liver values, cancer, inflammation, and my immune system (and I’m drinking some while writing this post). I actually notice a difference in my body, water retention/inflammation in particular, especially on chemo days, when I forget, or don’t get around to having a cup. It has been added to my daily routine and I think may continue past the chemo life cycle.

And once again, my friends have proved their worth. Last night, after my marathon day of chemo, I was a little more than fuzzy-headed and question whether I should work or watch a movie. In every single response the result was movie. You guys ROCK!!! And Practical Magic was just the ticket for me. Tonight the muzziness is not too bad, but I came home and took a nap after having some lunch. And now… on to the ice cream Denny brought home tonight after picking up my meds for me. 😀 (Oh and sorry about the screen shot below, I wanted to embed the FB status, but FB says it no longer exists… funny how I can take a screen shot of something that doesn’t exist, eh?

FacebookStatus

Tagged: , , , , , , , , , , , , , ,

Jan. 20.

Halfway to the Unknown

My Status: A little more tired than I’d like to admit
Mood: Good

Just a quick update… I saw my doctor today to review my blood work, as I do every Monday after chemo treatments, and had a chance to ask her how I was doing overall since we had hit the halfway mark. Are you ready for her response????

We don’t know.

She agreed that it was a good time to make an assessment of progress and was ready to send me for some tests—but then she looked at my chart. Here’s the problem … the tests she thought about running as a gauge to see how the chemo was working didn’t show the evil abnormalities the first time around, so re-running them wouldn’t give us any better idea about how I’m responding to the treatment than I know right now. The test which gave us the information about the abnormalities in the leukemia and the lymphoma was the bone marrow biopsy, and because of the potential for infection, the doctor will not conduct that test again until AFTER I have completed all six treatment cycles.

So it means we’ll have to wait until after my April treatment with probably a little bit of time for me to recover from the treatment itself, then have the biopsy done and wait a week or two for the results. In all likelihood, I won’t know how I’m doing against the cancer in me until the end of May.

Does my body really need to keep everything a secret??? I get the whole mysterious woman thing, but seriously, I’m not supposed to be mysterious to myself.

Other than the whole not really knowing how I’m doing overall against cancer, my blood values are good and the doc is quite pleased with how healthy I look, and how well I’ve been managing the treatments so far. So we’ll just keep moving forward one step at a time.

PS—I did ask the doc about using the port for taking blood, but she prefers not because not everyone knows how to handle the port, and it is more prone to infection than a normal stick for blood. *sigh* It took two tries to get me today… this is becoming a trend.

Tagged: , , , , , , , , , , , , , ,

Jan. 17.

The Aftermath

My Status: Headache-y
Mood: Cranky

Today what my body has been through in the last week caught up with me. Tired, headache I can’t seem to get rid of, and I’m retaining water like a camel. So I took it slow and easy this morning. I had an appointment with the surgeon for the port recheck today at 11:30, so I geared my morning toward prepping for that. My only problem with the recheck was finding the doctor’s office.

Once again, I didn’t get a confirmation call… and if I had, things might have gone a lot smoother because I might have questioned them when they told me to go to an office I’d never heard of. Not even thinking twice about it, I hopped in the car and went to the office I know… to be told when I walked in the door that I was at the wrong location. The receptionist handed me a card with the address, a place MUCH closer to my house, and off I went. Good thing I was early for the appointment at the wrong place, eh? I arrived at the “new” location and couldn’t find the suite on the card, so popped into the Urgent Care facility on the ground floor and asked. The receptionist there looked at me like I had two heads. So I asked for the doctor… OHHHH despite having 101 as the suite number on the card, he was upstairs… they didn’t tell me what suite, but gave me lousy directions “just up the stairs”.

By this time, my temper was frayed. The headache I had been trying to outrun came on full force, and I was NOT a happy camper. This is one of those times where I know my anger was disproportionate to the situation, but I also couldn’t change things. (Don’t worry, I didn’t behead anyone… I just kept stating over and over that I was NOT happy.) Fortunately, everything is good with the port, and I don’t have to go back unless there is a problem with it. And the drive home was short after having driven half the county earlier.

Knowing I wasn’t fit for any interactions with people, when I got home, I took a nap, hoping the headache would go away. No such luck. Of course, I’m way behind on getting fluids into me because I haven’t figured out how to sleep and drink at the same time. Pushing the fluids will ultimately help the head situation. I did ice it, so the edge has been dimmed, but still suffering with it. I am now drinking tea, and will try a little food before nausea kicks in, but I do have to say today has not been one of my favorites. I really could have done without the extra driving and the headache can leave any time.

The picture shows how I feel… being beaten by the forces of nature at the moment.

Tagged: , , , , , , , , , , , , , , , , ,

Jan. 16.

Cycle 3, Day 3 – Hydration

ButterflyFairy

My Status: Rested
Mood: Good

This will be a short post. Things went well today. I managed to have my first ever hydration day of less than 4 hours. YAY!!! I arrived early and got started about 15 minutes early, so finished in 3.5 hours. Lovin’ the new port for the speed if nothing else. But also loving that they don’t have to stick me to get the IV in. But the BIGGEST thing about today is I am OFFICIALLY 50% of the way through the treatment cycle.

**Sets off sparkly confetti cannon**

The road ahead is getting shorter and hopefully everything is working as it should with the treatments, and I will have a relatively clean bill of health at the end. It is very mentally and emotionally satisfying to hit the half way mark. I am surviving and doing it quite well, all things considered. Today really was a good day—the treatment was shorter, I got to spend time with my mom, and I took a two-hour nap. AND I managed to get some editing done while sitting in the chair. I feel blessed.

The picture today is a combination of butterflies (I see them as dancing) and a serene fairy because I need the fantasy touch at the moment.

Tagged: , , , , , , , , , , , ,

Jan. 15.

Cycle 3, Day 2 – Chemo

My Status: Rested
Mood: Good

Normally I talk about the picture for the post at the end, but I’m going to switch things up today and talk about this one now. 🙂 This picture spoke to me because it is how I feel right now. My body has a few cracks, and I may be a bit mossy around the edges, but I’m rested and merging with what I need to make me whole. (Besides… I can totally do that hairstyle right now.) My journey so far through Leukemia and Lymphoma has had relatively few bumps and for that I am eternally grateful. Resting is what my body needs… and sometimes is the most difficult thing for me to do.

Today went very smooth. Arrived on time, the chemo nurse put a new needle in, hooked me up, and away we dripped. At a normal pace. She slowed it down during the middle because she didn’t want to give it to me too fast, and as a consequence I am much clearer-headed than yesterday. 3 hours and we were ready to leave. SUCCESS!!!! The only issue I had was starting to get antsy from sitting near the end. And after yesterday’s marathon, can you blame me?

HalsaMatAt night, I usually use my spike mat, aka my modern bed of nails, to help relax my back and work out some of the back issues I have, but last night I didn’t use it. Primarily because I was so foggy and had taken a sleeping pill, and didn’t want to stay on it for too long or I might have permadents in my back. But since I DIDN’T use it… my back was not happy with more hours in the chair. Those who know me well, know I swear by my spike mat. It has allowed me to keep my back from completely giving up on me and helps me get a much better night sleep. And the pillow is the best part. LOVE my pillow. Anyway, today after being antsy during chemo, I came home, got out the mat and took a nap—despite the drug in the pre-chemo cocktail designed to hype me up. THAT is the power of the spike mat. I feel refreshed, my brain isn’t hazy, and I’m ready to attack more edits. Huzzah!!!

Now I should probably think about something to eat… oh yeah, before my nap, the tum was rumbling a bit, but now is solid. More fluid flushing and a bit of something to eat in my future. 😉 All for now. Looking forward to closing out this cycle tomorrow and I will be 50% of the way through my chemo sessions.

Tagged: , , , , , , , , , , , , ,

Jan. 14.

Cycle 3, Day 1 – Chemo

Tyrol, Austrian Alps

Tyrol, Austrian Alps

My Status: Mush-Brained
Mood: Good

My brain is mush… seriously, it feels numb. So please forgive any typos or nonsense sentences in the following. Today’s chemo went well, although it was a slow process. I arrived at 0900 to start my first bag—the one I had an allergic reaction to during Cycle 2. Six-and-a-half hours later, we finally managed to make it to bag 2. Looking at the time, a collective sigh went up because I’ve never managed bag 2 in under 3.5 hours. But this time it was different. This time we were using the Power PAC … In slightly less than 2 hours bag 2 was history. THAT is the power of the Power PAC.

Take a moment to imagine me sitting there watching the bag deflate, fist pumping, and singing “I got the Power”.

What makes the difference? When using the veins in my arms, they are big enough to handle the IV full flow, so even when not having to run the drip slow because of the potential for allergic reaction, they had to run me slower than most because of my veins. But the Power PAC is installed in my jugular… and if the jugular can’t handle it, then I’m giving up. Not really, but still…. Due to the larger vein size, it can handle the chemo at an improved rate, so likely my day 2 and day 3 times will decrease. Excuse me while I happy dance for a bit. Oh and the increased rate is probably responsible for the brain haze/numbness I’m experiencing at the moment because before I had more time to combat it. Definitely a good thing I have drivers taking me home.

When I went for my labs yesterday, I had the nurse re-bandage my port area because it was ridiculous. I had tape from the outside of my right arm to the middle of my sternum. And gauze… oh my goodness, the gauze. Over the weekend, I thought about offering my services to a football team for the play-offs. I’m sure they would have bounced off my gauze. And one of the most important (to me) aspects is that tomorrow I will be able to shower normally because THERE IS NO NEEDLE IN ME. The chemo nurse took the needle out because there is a limit to the number of days it should be left in… and I was at the max. So tomorrow a new needle for Wednesday and Thursday, and not another one for a month. YA!!!!

I like the picture for this post because it shows a beautiful, gorgeous, really, sky with only a few fluffy white clouds on the horizon. It sums up my day. Hard to be confined for that long day, and the brain numbness takes some getting used to, but overall—Terrific.

Tagged: , , , , , , , , , , , , , , ,

Jan. 09.

Surgery Day

Patagonia, Argentina

Patagonia, Argentina
Miriadna.com

My Status: Feeling pretty good
Mood: Determined

Surgery day started dark and early … the alarm woke us at 04:30. The dogs ignored the alarm going off because they are used to their Papa getting up at odd hours for work. They did a double take when I rousted myself to shower. The surgery itself went very smooth. As a bit of irony, the only trouble they had with the entire process to put in a port because IV’s were getting difficult, was getting the IV for the surgery in. 😀 My poor hand had to put up with two tries because the first ballooned. Nothing new, right?

Surgery complete, recovery went well, except my nurse asked whether Denny was angry because he was so solemn, so I explained he gets worried about me, and I’m the one making jokes throughout the whole process. FORTUNATELY, everything is covered up so I can’t see the needle… YAY!!! This makes me happy because what I don’t see doesn’t bother me. The bandage is a little extreme though. I feel like I have a combination of half a football pad and half a neck brace on.

I literally have to turn my body when looking to the left, down is easy, but up pulls. This is caused by the tape on my neck. I figure tonight while I sleep, the tape will pop and in the morning I’ll adjust it to be more comfortable for the next few days. I had to laugh because the first thing I did was pop the tape while getting dressed. That’s when they went tape crazy… trying to keep it from popping when I lifted my arms, they added gauze and tape.

Normally, I’d take a little more time to explain my day, but I came home and went straight to work for the day job because my colleague was having a surgery this afternoon and someone needed to be there. And I am so close to the end of my first round edits, nothing, not even surgery, takes precedence. I will be finished (tonight if I can last)

Oh, I now have a little key chain do-dad explaining the port to carry with me at all times. I have the Power Pack—a fitting name. The picture at the top was chosen because it is gorgeous, dramatic clouds with sunshine bursting through. A perfect picture for the day.

Off to finish my edits. 😀

Tagged: , , , , , , , , , , , , , , ,

Jan. 06.

Next Step Surgery

Novgorod Kremlin

Novgorod Kremlin

My Status: Tired
Mood: Cheery

I haven’t posted for a while because of the holidays, but now that they are past, it’s time to give you the latest updates. I saw my doc on the 30th and she gave me a prescription for the port catheter so we won’t be hunting for a “good” vein anymore to use for chemo. I saw the surgeon today and the surgery is set for Thursday morning, bright and early. The doc had requested the port be put in on Monday, the 13th, but the surgeon overrode her decision because he felt I’d be too prone to infection if we attempted to use the port on the 14th.

I’m actually pretty good with all of it, except one phrase skeeves me out. It is even on the prescription … “leave the needle in.” To someone who is mildly needle phobic, this phrase turns my stomach. So now I have to wrap my mind around the fact that I will have a needle in me from Thursday through at least Tuesday. It’s going to take ALL of my skills in NOT thinking about it to get me through.

But, just in case, someone better have several choruses of Soft Kitty ready to talk me off the ledge. I’ll be fine if I don’t think about it … so I’d better stop now, or total freak out will ensue. Believe it or not, I have always been very good about receiving shots and giving blood, but horrible with seeing the actual needle. Oh well. *conjures up visions of rainbows and unicorns*

Over the holidays, I managed to find my writing mojo again, and have finished the draft of One-Way Ticket, the fourth book in the Misfit McCabe series. I’m so excited about finishing up this book, words fail me. I can’t wait until you have a chance to meet the characters between the covers. Although I don’t normally jump right into edits, there was enough time between writing the bulk of the book and finishing it, so I’m in the middle of first round edits and things are going very well. And I’m busting to get back to the edits so I can get some feedback and polish it up and make it even shinier than it was before.

The picture at the top of this post was chosen for two reasons … a nod to the weather some of my friends across the country are experiencing while we are baking in Southern California during the day. And the Kremlin a nod to my friend, Jane Kindred and her love of Russia, and the release of her latest book, Prince of Tricks. Jane is having a book launch party tomorrow (1/7/14), so stop by and party virtually for a chance to win some swag.

Tagged: , , , , , , , , , , , , ,

UA-19119025-1