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taylrejones-blog · 6 years

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Chemo #5 and PET Scan Results

A very happy Thanksgiving to all my American friends who celebrate today! It’s the season of gratitude and I wanted to be sure to quickly share the promising news that I am grateful we found out week! Video: Taylre Shares His PET Scan Results PET Scan and Results I had my PET scan on Monday November 19th 2018. This is the scan used to detect the tumors in my body and causes them to glow in the imaging the capture. I reviewed the images and results the Oncologist along with comparing them to my initial scans in September. The new scans showed virtually no detection of the 10+ tumors we could clearly see in the initial PET scan which means the chemotherapy has been extremely effective. For only being 4 of my 12 treatments in, and not being able to see any of the tumors, is an unexpected and very good sign! They gave me a Deauville score of 2 (1 absolute highest and 5 lowest) which means the uptake of the chemo drugs is very high/effective. This is also clearly reflected in the dramatic change shown in the scan. This brings our confidence and the likelihood of a complete cure by then end of treatment even higher! I will still have to continue through these last 8 treatments for the next 4 months but we can all be excited to know the cure is waiting at the end of it all! A wonderful thing to be grateful for this day! Chemo Treatment #5 After reviewing my results of the PET on Wednesday November 21st 2018 I went up to begin my 5th treatment. Unfortunately, my white blood cell Neutrophil count did not change and is still sitting around 100 (the average person is 1500-8000) so it’s not likely I’ll get to a healthy immune system level until after all my chemo is done. You never know what will happen but if it plays a role in my chemotherapy being very effective against the cancer it’s a side effect worth it as long as I don’t get sick from someone’s flu or illness and end up hospitalized. Get Hydrated! Treatment went “well” and was less rough than the time before. If you ever have to do it I highly recommend making sure you are well hydrated before treatments. Drink a lot of water in the days before treatment and going into it. Add in a Gatorade or Powerade to help with electrolytes and sodium balance. I find the times that I am more hydrated the less nasty treatment can be. Sucking on some sweet candy/treat during treatment has also been beneficial. I find the most nauseating thing in treatment is when they do a saline push. It brings a very bitter and gross flavor to my mouth. Surprisingly none of the drugs so anything to my flavor so I can be counted as the lucky one. Humor in the Hard Stuff My brother and sister came to give me company during treatment and we had some good laughs. I’ll share one. One of the chemotherapy nurses came in to check my medication before they began injecting it in me. As the nurse was checking the laptop for my drug doses, I heard her sort of mumble “This battery is going to die soon” and she immediately turned and began the injection pump for my drugs. As she did this I fearfully stated “What? I’m going to die soon!? What drugs are you giving me?!” She turned bright red and stumbled over her words in embarrassment trying to explain she was talking about the laptop battery and not me at all. I let her know I know I knew but it was too golden the opportunity to tease her. I couldn't help but imagine someone of an older generation, who may be hard of hearing, being convinced that the nurse was talking about them. Of course, I know it really isn’t a joking matter, but if you know me well enough I often try to use humor to diffuse hard situations. My siblings got a laugh out of it and it lightened the mood of the room for us. Maybe not for the nurse but hopefully she knew I was only teasing and took no offense. She still came back to verify my drugs each time so we must not have scared her away too much. Power of the Positive It is my belief that the results of the scans have been a miracle in my life. I do not have any doubt in my mind that the kindness, prayers, good vibes, encouragement, generosity, and love so many have shared with my have played a part of the physical changes that have happened in my treatment. Of course, the Doctors, right medication, and God have also played a role in that too but to achieve better than expected results I believe is also linked to the positive direction so many have helped me to hold on to in the mental battle of this cancer. Those who have contributed may feel it as a small gesture. I can assure you that the small gesture has amounted to a HUGE miracle in my life. The scriptures teach us that “...by small and simple things are great things brought to pass...” This principle is very true. The small dripping words/thoughts/actions of encouragement from day to day during this battle can often bring more power than than a one day waterfall that dries up. Yet, whatever the case may be, we should always hold out and seek to fill and store away cups/jugs/pools of gratitude in our hearts to nurture our souls and allow us to share the same, or more, with others. “When we give cheerfully and accept gratefully, everyone is blessed.” -Maya Angelo

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taylrejones-blog · 6 years

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Chemo Treatment #4

November 7th, 2018. I was able to complete my 4th treatment of chemo which puts me at 1/3 of the way done with my planned treatment! The plan is for me to do 12 treatments in total so I should be all done with chemo by March of 2019. It still seems quite far away, to say the least, but each day is a little bit closer. The 4th treatment was a bit more rough than the others. It drained my energy quite a bit and left me feeling pretty wiped out and gross inside. I can’t really describe the “gross” feeling. I would say it feels like a mix of low blood sugar, nausea, and tiredness that fills all over your body. Mentally, I think of when you see some fresh clear water in a river or lake and someone steps in the mud on the bottom and the water turns into a muddy cloud. I’m not sure that describes it very well at all but it’s the visual picture that comes to my mind. The days that followed treatment were different this round than last round. I felt pretty tired the day after chemotherapy and was able to sleep for the better part of the day. Every time I would wake up I would feel like I was ready to go back to sleep and fall into another hour long nap. My mouth and tongue still did it’s annoying nerve issue, but less severe, and for the first time I didn’t have any hiccups happen at all. I did add an antacid to my list of pills I take to see if it would help me have less acid re-flux feelings and it seemed to work. Maybe that is what kept me from having hiccups? Upcoming PET Scan Before my 5th treatment they will perform another PET Scan! This will allow them to evaluate how effective the chemotherapy is working in my body and the current state of the tumors. I will be hoping to see a significant decrease in tumor size and hopefully less tumors than what they saw in the first scan before treatment. If the results of the PET scan look effective, I will only have to remain on the chemo treatment for the planned 12 treatments. If the results show slow progression they will extend the treatment by at least 2 months. Let us all pray and cross our fingers that the treatment has been very effective!

Promising News Part of the reason I expect to see good results from the scan is the fact that I have exhibited none of the symptoms I had from my cancer since day 2 of my first chemo treatment. No fevers at all, no cough at all, and no more night sweats. I’m also less able to feel/detect the tumors that were pressing against the organs inside my body. I’ve never been able to feel the tumors by hand but I used to be able to feel the pressure of them in my abdominal region. This has decreased significantly throughout my treatments. The most measurable difference is the significant improvement we have seen in my liver enzyme count. Weeks before I started chemo, my enzyme count was 8x+ above normal which is pretty dangerous. Before my 4th treatment I was almost down to a normal count! In my mind, I conclude that this means one of the tumors pressing on my liver causing the problems has shrunk. Of course, everything I say is just speculation and we’ll know soon enough after the PET Scan what has actually happened inside of me. None the less, the positive outlook never hurts!

Good Through the Bad Despite the fact that there is a lot to not enjoy while facing cancer and the heavy treatment of this battle, it doesn’t have to destroy the good things that still exist in life. My niece is still a cute little wiggle worm and for now we still have matching bald heads. The autumn leaves are still a spectacle as they change colors through the seasons. Love and kindness of others is still a beautiful force in this world. Is my body sort of eating itself from the inside out? Sure. Yet there is no rule in the universe that says you can’t smile about things during hard times. Holding to the things that bring you joy/smiles is just one of the options someone can use to face the road of life. It’s how I want to deal with all this to help it make a change for the good. I feel like it’s best way to allow it to make me better at helping someone else. Resilience is, of course, necessary for a warrior. But a lack of empathy isn't. -Phil Klay

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taylrejones-blog · 6 years

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Chemo Treatment #3

October 24th, 2018 was my 3rd chemo treatment. Everything about it was the usual protocol. I met with the Nurse Practitioner instead of the Doctor this time to help cut down on costs. Unfortunately my ANC was only at 2% so they were very hesitant again to let me go into treatment. Despite the numbers they still had me go in because any interruption to the treatment schedule reduces the effectiveness of being cured. I certainly don’t want to mess with 80-90% cure rate odds so I’ll just have to keep myself safe and away from any risk of sickness!

The post-treatment wasn’t quite as smooth sailing as the first two. I felt a bit more sick after the treatment and had a lot of issues with burning sensations in my stomach sort of like bad acid reflux. I saw an increase in the issues I was having with nephropathy (tingling in my hands and feet) but the nerve pains in my mouth were a lot less severe than in the first two treatments! Don’t Go Alone If you can avoid going to chemo treatments alone, I recommend it. As the treatments get tougher to deal with each time, it really does help having a friend or loved one to distract you during treatment. There is a physical aspect to having treatment that is a little different for each person. There is also a mental factor that exists. Sitting there for hours on end being pumped with some pretty intense drugs that you know will make you feel like your body is eating itself from the inside for the next week does have it’s mental fight even if the drugs don’t have a lot of physical pains or anything as they go into your system.

Mental Battle of Treatment How can I best describe the mental struggle of treatment? Have you ever had a time when, as a child, you had a school lunch that made you sick? Then from that day on you pretty much associate that meal with getting sick and develop a mental distaste or avoidance for that food? For me, it was “italian dunkers”. Chemo sort of does that to you mentally. You start to associate smells and tastes with treatment and it can give you a but of a self-inflicted nausea. Having things like candies and other stuff to suck on and distract your smell/taste is recommended. It wasn’t something I felt like I needed the first couple treatments but the more you go the more it starts to slowly creep into your mind and have an effect. The thing to remember through all of this is that despite feeling bad you can know that the result is cancer dying and heading toward a cure! “We can complain because rose bushes have thorns, or rejoice because thorns have roses.” ― Alphonse Karr, A Tour Round My Garden

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taylrejones-blog · 6 years

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Chemo Treatment #2

For any interested in helping me with growing medical costs, feel free to donate here. Even simply sharing the link can really help! Treatment Day #2 October 9th, 2018. My 2nd treatment was completed! Only, hopefully, 10 more to go! Treatment #2 was a lot like treatment #1 except this time I wasn’t in a “comfy” bed and got to enjoy my treatment in a recliner. So far the actual treatments themselves have been nothing to dread/fear. You just sit there having drugs pumped into your system and just try to keep yourself distracted while it happens. It is always good to have a friend with you for the company.

White Blood Cell Concerns Leading in to each chemo treatment they run blood labs to check and make sure your body is doing ok during treatment to make sure nothing looks out of the ordinary. This is all normal practice and they expect to see decreases blood counts due to the nature of how chemotherapy works. What the doctors didn’t expect was to see how much one treatment of chemotherapy was going to do to my immune system.

Neutropenia In your immune system there are 3 general types of white blood cells that are measured in your blood tests. They are Neutrophils, Lmyphocytes, and Monocytes. Neutrophils are the most prevalent white blood cells in the immune system that circulate throughout your whole body and fight infection. Upon running blood tests before my 2nd treatment we found that I had an absolute Neutrophil count (ANC) of 0. What does this mean? Basically a major part of my immune system is missing and am at a high risk for infection. My oncologist said they had never seen or had anyone go into chemotherapy with a count as low as mine. Despite the low numbers, they said that low neutrophil count is the only thing they ignore when going into treatment and that I have to be extremely cautious for the rest of my treatment. Basically, I’ll have to be a mask wearing, OCD hand washing, hermit for the next 6-8 months.

Hair Loss The day after chemotherapy my hair started falling out significantly. I was waiting for the day that it was going to start but didn’t expect it to be so soon. I was showering that morning and was surprised to see my hands full of hair after I put on shampoo. From that I knew it was going to be time for a shave as I didn’t want to deal with all that hair in my bed, clothes, and all over the house. For some people this part of the experience can be very hard but, since it’s a force outside of my control, I’ve just tried to look forward to it and turn it into something good rather than bad. The way I see it is as the hair falls out and dies so do the cancer cells!

Nerve Pain, Again So the trend, so far, with my treatments appears to be that I experience the nerve pain in my mouth from days 3-6 after my chemotherapy. I had treatment on a Tuesday and experienced the nerve pain in my mouth, throat, and jaw from Friday through Sunday. I have been on nerve pain medication but the pain still showed it’s ugly head. It was, however, less prevalent this time than the first time and I didn’t have any issues sleeping like I did in round one. I’m hoping it continues to decline with each treatment but we’ll just have to see what happens.

Since the passing of the nerve pain I have been back to feeling normal. During chemotherapy you always have random aches and a slight feeling that your body is dying on the inside. It is constant 24/7 and subtle enough that you don’t really notice it unless you focus on it. The awesome news is that I have been fever free, cough free, and had no night sweats since about day 2 of my first treatment so something must be going right! My liver enzyme count is still about 3x above average but that is down from when it was 8x. I don’t feel the pressure of my tumors anywhere near as much as I used to and so I’m taking it all as a good sign of the effectiveness of chemotherapy. They will do a scan after two more treatments to see how things have progressed to know for sure. One of the most powerful things in this process has been the outpouring of support. Not only the powerful support of close friends and family but also the support of strangers and an entire community of people. That kind of support in a dark time changes peoples lives. Notes from friends, a kind word of encouragement, a random text checking up on someone, an offering of service... Steve Maraboli said, “ A kind gesture can reach a wound that only compassion can heal.” I think no one should underestimate how true that statement really is.

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taylrejones-blog · 6 years

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Facing the Financial Burden

I mentioned it in some of my initial posts but thought I would share a bit more information relating to why I was denied financial assistance from the healthcare I have. It’s a tough thing to hear that you are diagnosed with stage 3 cancer. Being told you are on your own to pay for it also felt like getting diagnosed with cancer again. ------------ Some friends wanted to help me in this financial struggle I face with cancer. They started a GoFundMe campaign to help with some of the bills. https://www.gofundme.com/help-taylre-fight-cancer Please feel free to donate, anything helps, and even if you can’t donate sharing with others the link is a tremendous help as it helps qualify my campaign to be featured on the GoFundMe Lymphoma page. ------------ How did I get in my current insurance situation? In a nutshell, I was dropped from my insurance with Blue Cross at the end of 2017. They told me they no longer offered individual insurance despite me never having any medical issues or used the insurance at all in the years I was with them. As I searched for new insurance, the only options available to me were expensive 600+ dollars a month terrible coverage plans. I felt like there had to be something better out there! That is when a lot of friends told me about health sharing and the benefits it brings. It looked great and I got signed up at the start of 2018 on a low tier plan with a health share.

Now, my plan isn’t great, $5000 deductible with $125,000 in coverage per incident. Being in good health I figured it was the right plan for me. Even if I had a semi serious injury, or cancer, or a minor surgery I would be covered enough to manage it. So I went on my merry way understanding that the plan would cover hospital specific costs of those amounts. How was I not covered? Fast forward to my cancer situation. After having done all my testing with my primary care doctor I was passed on to an oncologist at The University of Kansas Hospital. They asked for my insurance and I showed them my health share card. They said “Oh yes, we work with them often, this is great” and had me do a good faith payment to see the doctor. After that visit I was told by KU that they contacted my health share company and that the plan I had with them would not cover my care. They told me that I was going to have to be considered a self pay. Something had to be wrong. They informed me that my health share coverage plan only covered inpatient hospital costs and that all of my treatment for cancer, unless I had major surgery, was outpatient. How do I pay for all this? There is financial aid available to people who qualify. The hospital I’m at assigned me a social worker and a financial adviser who both have sought to investigate any grants, aid, and discounts that can be given through treatment for someone is considered a “self pay.” Unlucky for me, after all their investigation they were not able to find or get anything to assist with my treatment.

Self pay pricing is applied to me through the hospital. This SIGNIFICANTLY cuts down the price of all services. Had I not had my prices negotiated down with my discount my chemotherapy treatment alone would cost $156,000 or more and all my other costs of treatment adding my bill up into the $300,000 range.

Crowd Funding is another option. I had some wonderful friends create a GoFundMe campaign to help me fight the rising financial bills I’m being faced with. You can see the campaign at: https://www.gofundme.com/help-taylre-fight-cancer

I know that I’m not the only person to face financial burdens with cancer. Even people who have insurance will still have to deal with unexpected costs in treatment. One thing I know for sure, the less someone has to worry about paying the bills the more they can focus on kicking cancer to the curb!

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taylrejones-blog · 6 years

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Week 1 of Chemo - Nerve Pain

October 1st, 2018. Today marks my 1 week mark since my first chemo treatment! That means only 23 more to go (based on my 6 month chemo schedule)! This week has definitely had its ups and downs. Day 1 of treatment went rather smoothly aside from the short fever incident. Day 2 I felt about as normal as can be, which was great! I was told by other Hodgkin’s survivors that the first 2 months of treatment are relatively easy and the later months that get hard because each treatment you sort of compound the chemo drugs into your system. I’ve personally decided to look at my treatment one day at a time because it really does effect different people in different ways.

Day 3 arrived and this is when it started to get a bit more bumpy. Having mouth tenderness and mouth sores is a common issue throughout chemo. I started to develop pain in my mouth but it didn’t seem like pain that would be associated with mouth sores. My pain seemed to develop around my tongue, throat, and jaw. Throughout the day the pain became more and more severe. I called the oncologist and, after a while, got a hold of one of her nurses. I was instructed to rinse with salt water multiple times a day. I did this but the pain continued to grow. I decided to call my primary care doctor, who is always quick to respond, and had him prescribe some “magic mouth wash” which has a mix of drugs including lidocaine that can help to numb my mouth. He sent the prescription through right away so I could have it ready by the next morning.

That night the pain reached it’s climax. The best way I can describe the pain is a constant burning sensation in my mouth. Then, whenever my tongue was stimulated to swallow, eat, drink, or at just random times every 5 minutes it felt like a very spicy burning pepper exploded in my mouth causing a burning shooting pain throughout my tongue, throat, and jaw. The pain was severe enough that it would cause me to freeze up for about 15-30 seconds until it passed. Sleeping wasn’t really something I got to enjoy that night as I would wake up often to the pain surges in my mouth.

Day 4 arrived and I was ready to get to that “magic mouth wash!” It numbed my mouth but unfortunately the pains I was feeling surged through the numbness. This is where I was pretty sure it was an issue with nerve pain. Thankfully I was able to get a hold of my oncologists office before the weekend hit and properly explain the issue to them. They gave me a prescription for some medication that helps with nerve pain. I started taking it that evening and the pain slowly lessened. Throughout the pain, I learned I was able to tolerate eating foods that are warm and creamy like chowders. Cold things would cause more pain and anything acidic foods were pretty bad. I was pretty bummed, not just from the major pain, but that I had to give up on my healthy diet and replace it with creamy soups until the pain got under control.

Day 5-7 the pain slowly diminished each day and I have started eating normal foods again! I was able to make and eat a healthy smoothie today! I hope that I’ll be able to figure out why the nerve pain I was feeling was happening with the oncologist before next treatment. It really is such a wonderful feeling to be able to eat normally again after the days of pain. You forget how great the simple things are until they are taken away. I never thought I would feel so happy just being able to drink a glass of water! I’ve thought a lot about why we have to face trials/struggles in this life. I’m sure I’ll think about it a lot throughout this battle. No one is immune to them. Every single person has a hardship they are facing and there may be times when we wonder “Why me?” I’ve tried to do my best not to let that thought poison my mind. You just won’t yield benefits from that mindset. I know that some of the struggles and trials we face in life are tools that can help build us. I liked a poem from Douglas Malloch shared by Thomas S. Monson in a talk titled “I Will Not Fail Thee, nor Forsake Thee” and wanted to end with sharing it. Good timber does not grow with ease, The stronger wind, the stronger trees, The further sky, the greater length, The more the storms, the more the strength. By sun and cold, by rain and snow, In trees and men good timbers grow.

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taylrejones-blog · 6 years

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First Day of Chemo

September 24th, 2018 7:00am. My first day of chemotherapy treatment. I had all my snacks packed, drinks filled, healthy smoothie made, gum, toothbrush and toothpaste, ginger chews to help if there is any nausea, blanket and an extra pillow, computer and other entertainment ready to go. I felt like I was going for a 2 day sleepover or something. My fiance and mom came with me to the first treatment to root me on and make sure everything went well. It was wonderful having them there with me because the first time doing a lot of life changing things can be a little nerve-wracking. Because we got there so early, or maybe because it was my first treatment, I was given a room that had a bed in it! The treatment ended up lasting almost 8 hours so I was grateful we did get that room. One thing to note, it was about 67 degrees in there, so be sure if you ever have to do chemo or sit with someone doing chemo that you plan for some possible chilly indoor weather. They do bring you warmed blankets, which are nice, but having your own warm cozy blanket is a nice thing too.

One thing I was the most curious about was how irritating it was going to be for them to poke me in the port to begin my IV. I wasn’t sure if it was going to be painful and irritate me the entire length of the treatment like and IV in your arm can tend to do. In case you don’t remember what a port is, you can see more here about it. There was a bit of a sting when they first poked me in the port, but after that it was literally painless and I didn’t even notice it was there. There are some people that hate to see their port go after they finish chemo because of how much easier it is than being poked in the arm. I, on the other hand, will be glad to be done with chemo and the port when it’s all over.

When you go through chemotherapy, they administer a series of drugs into your IV. I am on an ABVD treatment plan. ABVD stands for the different drugs. (A)driamycin, (B)leomycin, (V)inblastine, and (D)acarbazine. They inject, or pump, these drugs into your system over a certain period of time. Some people have reactions to the drugs as they get pumped into their system such as funny tastes or smells, nausea, and other symptoms. I, thankfully, didn’t have any reaction to any of the drugs that were given. The treatment was basically smooth sailing and we sat around playing who wants to be a millionaire games and card games for a bunch of the time. It’s super easy to walk into treatments expecting the worst and I was glad that I was blessed with no hiccups while I was there. When I arrived home, on the other hand, it was a slightly different story. I was hit with a fever that had me in full body chills and aches and a lot of fatigue. I fell asleep and after a few hours the fever and chills passed. I was definitely used to fevers and chills with all that I have been experiencing these past months so it seemed almost routine to me. After those three hours my body was back to normal and I didn’t have any issues the rest of the night. I really believe the first treatment went so well for a variety of reasons. There was a great deal of support and encouragement being shown to me from all around that gave me a lot of courage and hope going into it. You truly cannot measure the power that comes with positive thinking and kindness shown from others. I went into the treatment very well hydrated, which I hear can really help. I also changed my diet significantly in a very healthy way in the weeks leading into treatment. The last, but certainly not least, was sincere and heartfelt prayer. Gordon B. Hinckley said it well, "If life gets too hard to stand, kneel." I have found myself kneeling many times throughout this process and I know there are many many more to come. I am grateful for prayer and the prayers and thoughts shared with my by so many. The power I feel from them in my life is very real indeed.

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taylrejones-blog · 6 years

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Chemotherapy Treatment Plan

I met with the oncologist on September 19th, 2018, just barely getting all my required tests done in time. In my meeting, they discussed with me the treatment plan they think will be best. Now my cancer, Classic Hodgkin’s Lymphoma, is basically the most curable and treatable of the Lymphoma cancers. They have made great advances in it over the years and basically have it down to a science. This doesn’t mean that going through the treatment is a walk in the park by any means but it does mean they don’t really offer any major clinical trials because of the success they have with their treatment plan. In our meeting we reviewed my PET scan results, talked about what stage my cancer is considered (Stage 3S), and discussed the different drugs that will be administered in chemotherapy. I will be on what is known as ABVD Chemotherapy. This is a combination of 4 different chemo drugs that will be administered via IV. I’ll be taking them every other week for 6 months. They will do a PET scan after 2 months to check on the effectiveness of the treatment. If it isn’t advancing as quickly as they expect they would extend the chemotherapy by 2 months to make it 8 months. I was told that the cure rate at 6 months is 80% and that the cure rate at 8 months is 90%. The odds are in my favor and with all the support and prayers odds are 100%! Killing that cancer one day at a time! They have me scheduled for my first treatment on September 24th, 2018! I’m nervous but also ready to stop this cancer dead in its tracks before it keeps spreading.

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taylrejones-blog · 6 years

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Pre-Chemo Testing

I wanted to talk about some of the tests that have to be done before you can begin chemotherapy for anyone who may have to go through it some day. These will of course be my opinions of the tests which may differ from person to person. Later on in my blog I’ll start to talk more about my feelings but I wanted to keep these first few posts more focused on the facts of what has been happening. I think the feelings and struggles of the cancer will manifest themself the most as I am going through chemotherapy. The following tests have to be done for the doctors to have a base line to measure from before you start chemo. They aren’t light weight drugs so the doctors need to be sure they know how your body and certain organs are functioning that can be affected by chemo during treatment. PET Scan The PET Scan, though expensive, is a pretty straight forward test. You have to fast for 6 hour or so before hand and they test your blood sugar levels when you first get ready for the test. They do this because they will inject you with a glucose substance laced with a radioactive tracer. Since cancer is a high energy cell and loves sugar the substance will accumulate around those cells in higher concentration along with a handful of other organs such as kidneys, bladder, and brain. You have to let the substance settle for an hour and then they take you in for the scan. Now, I imagined the stuff they injected into me being some highly dangerous radioactive goo or something. It isn’t. In fact, there aren’t any special procedures you have to follow after treatment like drinking tons of water or anything like you do when they inject you with contrast for an MRI or a CT scan. The stuff from the PET just naturally dissipates over time. The scan itself is pretty easy. I had to be scanned from the head down to the knees to basically get a full body scan to make sure we could see where all the cancer is. You sit in a tube, similar to an MRI, and they just basically take pictures of the different sections of your body. There really is no noises or anything at all. You emit gamma rays from your body and the camera just sits there and absorbs those gamma rays to form a picture. You won’t turn green like the hulk so hopefully that isn’t crushing anyone’s dreams. Once they take the pictures you are on your merry way. The images from the PET are pretty obvious at identifying areas of cancer, at least with mine, and they show up red in areas of high concentration and fade to less intense colors through orange, yellow, all the way down to blue. We could easily identify the lymph nodes that were infected. There was some faint color in the spleen that they weren’t sure about as it wasn’t an obvious red tone but a very muted small yellow/orange. They were also able to identify some GREAT news that what we thought was a mass on my liver was actually an infected lymph node that is near the liver. It would be easy to misidentify because there are some many lymph nodes around and that travel through the liver. Since my liver was completely blue they had no reason to suspect any mass infecting it. Echocardiogram

The echo is without a doubt the easiest of the tests. It’s basically an ultrasound video of your heart. They do it to see where your heart function is and make sure there aren’t any abnormalities. You just lay on a bed and they do an ultrasound through your chest at different angles and get a bunch of pictures and recordings. Easiest test by far. Pulmonary Function Test (PFT)

This was, to me, the most annoying of the tests. There wasn’t anything painful about it you just have to do a lot of breathing exercises that push your lungs to the limit. They have you blow into a tube/mouthpiece and you take deep breaths and blow out all your air to measure your lung capacity and oxygen intake levels. The problem for me was I blew my air out too quickly and they would tell me to keep blowing out for another 10 seconds when I literally had nothing left inside. If I took any breath in or stopped exhaling, I would have to do the test over again. There is nothing scary at all about this test I just didn’t like having to “do it over again” so many times pushing my lungs to their limits.

Port Placement

This one, similar to when they did my biopsy, required me to go through the whole conscious sedation again. This video sort of explains what a port is for anyone who is a more visual learner (all computer graphics no real surgery imagery). The purpose of the port is to make an easy access location to administer drugs that doesn’t require very much maintenance and lower risk of infection. It does make you feel like you have a tracking device or some strange alien implant because the port is actually under you skin and you can see it bumping out. They have to make some small incisions so it does take a few days to heal. So far, the biopsy and the port placement have been the most expensive procedures.The sedation drugs just make you feel a groggy and tired. I don’t think I said or did anything funny like you see in some of those wisdom teeth videos. If I did, I would post for your viewing enjoyment! Scheduling Advice All in all the biggest struggle with these tests was just getting them scheduled in a timely manner so I could get going on chemo. The hospital doesn’t do the best job at following up with you quickly on scheduling. YOU need to be pretty proactive and make sure that you are getting on the schedule quickly by calling the different scheduling departments. Even if the doctor orders something stat they don’t always make things happen quickly. That is my piece of advice regarding tests/scans that I learned the hard way after having to wait almost 2 weeks to get my biopsy performed.

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taylrejones-blog · 6 years

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Diagnosis Day and the Prologue

September 13th, 2018. That was the day the doctor spoke the fateful words “you have Hodgkin’s Lymphoma.” For anyone reading that doesn’t know what that means, it is a form of cancer that starts in your Lymph Nodes. Your body has lymph nodes all throughout it and they act as a network to help filter out harmful substances and act as sort of an arena where white blood cells attack and destroy germs. With lymphoma these white blood cells get mutated and become cancerous dividing out of control causing tumors in the lymph nodes. You can watch a :30 video about it here if you want to see it visually. For some people finding out you have cancer may come as a shock or total surprise. For me, they were words I was already prepared to hear. With all the testing and predictions the doctors were making leading up to that dreaded phone call I was preparing myself for that outcome. Sure, in my mind, I had hopes that they would find something else. Maybe a bad case of mono or some sort of rare fungal infection effecting my lymph nodes that could be taken care of with some medication. Those outcomes would have been much easier but something inside me, not the cancer tumors, was telling me that it wasn’t going to be the outcome. I felt like God had a different plan. That may sound strange but it is what kept pressing on my heart and mind despite my personal desires that it not be cancer. I want to back track for a minute to help paint the whole story of what has happened leading up to my diagnosis. Maybe it will be something that, if anyone else ever experiences, can help someone figure out the root of the problem faster than it took me. If you aren’t as interested, or have already heard me tell the story leading up to my diagnosis, you might skip pretty much the rest of this post. Also, since I am a religious person, throughout my blog there will likely be some mentions of God, faith, etc.

First Symptoms

It was around July 12th, 2018, I started to see some of the symptoms that lead to my diagnosis of Hodgkins Lymphoma. At the time, it really seemed like nothing. All that was happening was in the evenings I started to feel feverish. I would feel like it was freezing, felt tired/sore, just your typical fever type symptoms. I didn’t really think anything of it. I would take my temperature and it would show that it wasn’t really elevated so I just thought that I might have been being a wuss or something. This same fever-like feeling continued on each evening for about a week but only seemed to show up in the evenings. After about a week the fever started to creep into the daytime hours as well and my temperature actually started to read around 100. I finally had proof I wasn’t just being a wuss! Then, around Saturday July 21st my fever seemed like it was starting to go away and I started to feel a bit normal again that day. Unfortunately, that night, I woke up feeling a lot of nausea. After trying to fight it in my bed by laying in different positions and propping myself up with pillows, I knew I was going to have to vomit. To skip the details, I definitely cleared out anything that was inside of me. I thought to myself “it must be the flu that has made me feel sick all this time.” The nausea remained for another day, no vomiting, and then went away by Monday. Unfortunately, my good old fever did not. This is also around the time I started to develop a cough. This fever and cough still remain with me to this day. First Clinic Visit Now, any of you who know me know I don’t like to spend money unnecessarily. With a $5,000 deductible on my health coverage plan I wasn’t about to go to the doctor without trying to fight off the sickness on my own and see if my body could take care of itself. I made it another week, dealing with a daily fever around 100-103 all day. I finally decided in my mind, “If I wake up tomorrow and am still sick I am going to a clinic to get this looked at.” Of course, I woke up the next day and my fever was gone. I assumed this meant I was on the mend and for the next few days I wasn’t feeling too bad. By the end of that week, however, the fever returned and I finally made the choice to go to the Urgency Room clinic. It was on August 12, 2018, which was about a month from when I first experienced symptoms. I knew a month long fever just wasn’t normal.

Now, as with many people who get sick, I spent a lot of time looking on the internet trying to diagnose the problem. I thought maybe it was Mono, TB, walking pneumonia, a flu virus, Hepatitis A, an infection from acid re-flux, etc. Not at all did I even think to look at it being cancer because I am a “healthy” young adult. The nurse practitioner at the clinic tried all she could to figure out the issue. I had all my blood tests run, got a chest X-Ray, basically everything she had the ability to do we did and came up with no real answer. They told me that my blood tests all came back normal but I never got a call from the nurse practitioner to review my blood results. I had her prescribe me some steroids to see if it might help with my cough but there was no change. Through prayer, and a blessing of healing, I woke up the next day with no fever at all. I still had the cough, but the fever was gone and stayed gone for about a week and a half. I figured that I was FINALLY on the mend from whatever the problem was so I didn’t think to call the Urgency Room back to review my blood results. Little did I know that there was an area that should have set off warning bells for the nurse practitioner in the liver enzyme readings.

I called the Urgency Room back again, about two weeks after my first visit, because my fevers had returned and were now trying to stay at 103. I was getting frustrated that no one contacted me about my blood results. They asked me to come in because they thought they might have another test they wanted to try but this time a different location. I guess this visit I was able to see a more experienced nurse. This new nurse took one look at my blood results and told me “You need to go to an emergency room or see a primary care doctor right now.” She explained that my liver enzyme count was more than 6x above the average and, with her experience working in infectious disease, I needed to have my liver scanned right away. Was I frustrated that no one told me about the seriousness of this problem two weeks earlier? Yes. Yes indeed.

Off to a Real Doctor

That very next day I got in to see a primary care doctor. I was able to find, through some friends at church and a family member, a doctor that was the perfect fit as his practice does not work through insurance. It’s a doctor that you pay a flat monthly subscription and get excellent service, more one on one time, quick response times directly from the doctor or his staff, and they have a lot of great hookups on prices for testing and drugs. I know it is starting to sound like a sales pitch but with the number of visits and tests I have had to go through with this it has been a financial life saver. My doctor had me run some more blood tests to find that my liver enzyme numbers were now 8x higher than the average person and he ordered me in to get an ultrasound right away. It was also around this time that I started to experience my 3rd symptom... Night sweats. If you haven’t had these it is definitely different than being hot and sweating at night. With night sweats you wake up in a pool of sweat with your clothes/sheets drenched. You don’t feel hot, just soaking wet and only on the areas where you touch the bed/sheets. You don’t have sweat pouring down your face or anything. I recommend, if you have night sweats, to invest into some moisture wicking sheets that can dry quickly and help deal with the sweat a lot better.

Through the ultrasound, they found what appeared to be a mass on my liver, which would explain the issues with my liver enzyme counts being so high. When I heard that, things turned a lot more scary. I was hoping for maybe an issue will gall stones or something but didn’t expect then to hear I had a mass on my liver. The thought of liver cancer was quite scary but made no sense since I don’t drink or do anything that would bring much harm to my liver. The symptoms of liver cancer were also significantly different than what I was experiencing so I tried to keep my mind from diving down that dark hole that I might have liver cancer. I was immediately scheduled for an MRI so they could try to identify the mass to determine what it was and if it might look like cancer for sure. One thing I learned when doing the Ultrasound is that it is very torturous to have to fast while dealing with a severe fever. The day of my ultrasound I had to fast for about 8 hours before the test and I struggled with a fever that was 104. I felt pathetic as the tech asked me to take in deep breaths while I laid on the table shivering and barely able to control my breathing the way they needed. I learned after the fact that I could have taken some fever meds before the procedure so it was definitely a learning experience. The MRI wasn’t too bad. They give you head phones and put you in this tube with your arms over your head. I had them play a bunch of pop 80′s music. With the music and everything it really wasn’t as loud and scary as people make it out to be. In fact, it wasn’t scary at all. The scans came back apparently tough for the radiologist to make a decision about. He concluded that a biopsy was needed to be sure if it was cancer. He then consulted with 4+ other radiologists to look at the results because it wasn’t explaining the fever and cough. Upon further investigation they decided that there was some swelling in lymph nodes that they wanted to look into and ordered that I have some CT scans performed from my neck down to my genitals. The CT scans are what revealed the bigger picture. The results back from the CT showed swollen lymph nodes ranging from my abdominal area down through my pelvic. From what they could see there was a mass on my liver, a 2nd nodule on my liver, 7+ lymph infected lymph nodes, and multiple nodules in my spleen. This is when the doctors felt fairly certain that we were looking at some type of Lymphoma. This is also when I knew a big battle was going to be ahead. As I studied the scriptures, I was reading in areas that focused a lot on being prepared for trails that will come. I pondered over what I could do to help prepare myself for everything ahead and, with the help of my fiance, looked into making a major diet change. I wasn’t eating bad, by any means, but there was a lot of information and experiences of others that I would read about and hear their positive experiences of incorporating a lot more vegetables and herbs into their diet and cutting back on meats, dairy, and refined sugars. I changed some of the following:

Diet Change

Removed- milk, (often) butter, sour cream, (often) cheese, salt, white breads, white rice, red meats, and anything that isn’t natural sugar.

Added/Eat More Of- Spinach, blue berries, strawberries, kale, salads, carrots, grapes, bananas, tomatoes, broccoli, oranges, Kefir, whole grain breads, brown rice/cauliflower rice, raw oats (Muesli), 1 clove pressed garlic w/ a half squeezed lemon (before bed or your breath will reek all day). Supplements Turmeric, flax seed oil, vitamin d, reishi mushrooms, and super food powders that I add to smoothies called “super green” and “forever beautiful”.

Have I noticed my life change dramatically since I swapped my diet? Not really. Have I noticed a change in my symptoms since I changed my diet? I have! By the end of the first week of the diet I was taking 6+ Ibuprofen pills a day to keep my fever under control. By the end of the first week I only needed to take 1 a day. Going into the 2nd week I no longer needed to take any ibuprofen at all. Unfortunately, going into the 3rd week I have had to start taking 1 or 2 pills of Ibuprofen again each day. It could be a cycle my body just decided to do. None of it is clear yet, and their scans didn’t show any decrease in my tumors but I figured a healthier diet is only going to help especially as chemo approaches.

Healthcare Coverage

After discovering all these results from my scans the next step was to pass me off to an actual oncologist and get a biopsy performed. After talking to numerous people, the decision was made to go with KU Med for my treatment. When I arrived for my first appointment with the oncologist, that is when I learned for sure of the other road bump in all of this... Cancer isn’t cheap and my healthcare plan was not going to cover any of the cost...

“How did this happen? I thought for sure I was on a plan that had me covered after my $5000 deductible? Something must be wrong!” are the thoughts that went through my head. It was explained that the health plan had stipulations that did not cover anything that was considered out-patient. I was told, by the KU staff, that everything cancer related aside from major surgery was going to be classified as out-patient and therefore my responsibility to pay. I have been able to work with KU to allow me to have a self pay discount. This cuts costs significantly but still leaves me in a situation that I’m not sure how I’m going to handle at this point. I’m working with KU to get an estimation of all the treatment costs to understand how much my total costs are going to be so I can figure out how to make a plan.

When it comes to your health coverage, especially if you are young and healthy, make sure you fully understand all the terms and stipulations of your plan. If there is anything in them that you do not understand, make sure that you find out what they mean. Until this happened, I hadn’t been to a doctor in over 10 years and was basically healthy as I could be. You never know what might happen and getting stranded with the costs is NOT something you want to have to deal with. Especially while trying to fight through a serious illness.

Needle Biopsy

Finally, on September 10th, I was able to get in to have a biopsy performed. This was a needle biopsy, where they take a needle and extract a core sample from a tumor/cancerous area. They pulled from one of the largest tumors in one of my lymph nodes in my abdomen. This is all done under conscious sedation and CT guided to ensure precision. They performed it under conscious sedation, which basically makes you get tired and don’t really remember the procedure. It was a pretty quick in and out ordeal maybe lasting 15-30 minutes and really nothing that anyone should be to nervous about. The only nerve racking part was being hooked up to all the machines and being moved into the room where they do the procedure. They showed me the core samples they took and they looked like little white strands so that was fun. I was still pretty foggy from the meds so I only faintly remember. It only took a day or two to heal from it all. Diagnosis Day

The day of my diagnosis finally came on September 13th. Most people that talked to me would ask how I wasn’t dying with the anticipation and that the waiting. I already figured I had cancer so all I was waiting for was the doctor to confirm it. My cancer has been a bit different than what I hear from most others that have Hodgkin’s Lymphoma because none of my infected nodes manifest themselves in easily identifiable areas like the neck, armpit, or groin. Even now, I still can’t physically feel any of the tumors with my hands but I can feel them swollen against a couple organs in my abdominal region. When the call came in it was the fellow doctor on the other end of the line. He asked if it was alright to discuss the findings over the phone and I agreed. It was pretty straight forward conversation from there as he told me it was confirmed through the biopsy that it was a “Classic Hodgkins Lymphoma.” When I heard this, I was actually relieved a bit which is quite strange to say. The reason being is I knew it was the most curable, treatable, and “cheapest” of the Lymphoma options I could have had with the least harsh chemo treatment (still harsh but not as harsh as others). With an 80-90% cure rate the odds are in my favor. Being young and “healthy” also helps out on those odds! The next steps before chemo are a PET scan, port placement, PFT, and Echo!

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