Post Chemo Life

Condensed update:
I am still in remission. I have only had two PET scans. One in May and one in July. May PET scan showed areas of cancer in several places in my body. After four rounds of chemo I had my second PET scan that showed no cancer. I am in remission!! Great news. I will have my next PET scan in February. Then, if the cancer is still in remission, I can have my port removed from my chest. I am tired of the port and really hoping to be done with it. Until February, I will go in for monthly lab work and a port flush. To keep my port from blood clots they need to flush it occasionally. So for now I just wait. I have an appointment in December about being a cancer survivor. What are my long term effects from chemotherapy? What do I need to watch for in the future? ETC...

Longer update:
I like to give people the option of the shorter update. Its more factual, less emotional. In case you've already reached your maximum emotional capacity for the day. Some more in depth details about post chemotherapy for me. Physically, I am still tired. I wonder what normal feels like now. When Ben says he is tired and exhausted, I am reminded that this is a normal feeling at times for people. Tired and exhausted have kind of been the constant normal for me the past several months. I have this unrealistic expectation that once my body goes back to "normal" that I will have an endless supply of energy. ;) Another physical lingering side effect is sore muscles. I stand up after sitting and I look 50 years older than I am. I can hardly straighten my body. My muscles are really sore all the time. Another weird symptom, is my fingers lock at night. This may sound like no big deal, but its actually painful and uncomfortable. I wake up and cannot straighten my fingers. With some work and time they straighten eventually. My doctor thinks its from the Lupron injections I was on. Those were the injections I took that were suppose to preserve my fertility. We are still unsure what the future will hold regarding fertility. If we are still able to have children, the doctor has recommended at least a year to try for a child. My body needs time to recover. After being pregnant in 2013, having a baby in 2014, nursing a child for a year, then going through chemotherapy, I am 110% okay with that. Another obvious physical change is a lot of my hair is gone. I never went bald, which I guess is unusual (dr said 9 out of 10 lose all their hair on the drugs I was on). But I still feel I have gone through a small identity crisis. I think I found a lot of my worth and identity in my appearance in the past. I've struggled with not being able to look the way I want to look. It's vanity... but its the truth. This is my blog so I get to put what I want in here. I also have struggled with my weight while being on chemo. It's a depressing feeling to not be able to fit in your clothing. Even though I don't think I am fat, I still want to fit in my clothes. I was much more accepting of gaining weight for a child.



Emotionally, wow, should I even go here?? ha! Emotionally, I am doing well actually. My hormones are all over the place because of the drugs I was on. I have felt a large range of emotions. Depressed from the long days, weeks, and months of sickness. Discouraged, then encouraged. Scared and anxious, then completely at peace. Alone, then surrounded.

Since its the day after Thanksgiving, I will end this blog with things I am thankful for. Not in any particular order.

1. Health. Which only God can supply. I am thankful for the means that God uses. Included in those are the medical staff that have been with me through this.

2. God working on me. This is the greatest blessing. God is not going to leave me in my stagnant faith. Thankful for the means of grace in my life.

3. Our church and the church. The building we go to on Sundays, and the people that also go there. First Evangelical Free Church in Sioux Falls. Wow, this place and these people have supported us. They have prayed, they have loved us. And found many other ways to meet our needs. And the church.... As in all the people that know God and are His people. I have met strangers that have been faithful in prayer for me. I didn't want to lose it in front of a stranger, so I had to just say thank you to one guy and walk away. I just bawled as I walked away. How can a complete stranger care for me that way?? It's Jesus! His church, his people.

4. Family. Most specifically Ben. In sickness and in health, he has been faithful. Also, the rest of my family. Which includes my married family too. I have had great support.

There is SO much to be thankful for. I could go on for quite a while, but this post is getting long enough. There is an update for now.

September Update

The (medical) facts: I am doing well. I completed my fifth round today, which would be my tenth infusion. I have to do six rounds, or 12 infusions. That is only two left! Wow!! Time always seems to fly in life, but right now I am welcoming the quickness of time. The last few chemo infusions were hard. I got sick throughout the administering of chemo. I clutched a vomit bag and waited... I never did throw up but I felt like I was on the verge most of the time. I cried and told Ben I couldn't do anymore. They were hard days. But today was much better, I tried a few things to keep me preoccupied and it worked! I was still sick but I felt like it was manageable. The days following after chemo are still hard. I think my body doesn't spring back as quickly as it did in the beginning. Some of my side effects are worse too, like the skin rash. At my last appointment my blood counts were low and not looking great, so they gave me some injections to help recover those counts. This week they looked much better and I was able to proceed with chemo.

On a more personal note, I am doing ok. I think better than the last time I blogged. I am struggling with the general down in spirits type of struggles that come with feeling ill. When you are continually sick you kind of have to fight for joy. Or at least I have. I have to focus on all the good. It's pilled all around me, so I focus on that. I turned 30 this month. The days surrounding my birthday brought more reminders of all the good in my life. Cora is a constant source of joy in our lives. The family, friends, and church that have surrounded us at this time in life are huge for me! My mom being here to help me is also huge. I need help physically with my home and my child, but I also need help to stay positive. I could go on and on about God providing for all our needs at this time, but I will just leave it at he is blessing us and providing for all our needs right now. We are thankful. We are almost done... I can kind of see the light at the end of the tunnel. October 19th is my last treatment. Then I will have surgery to remove the port. Then 3 to 6 months later another PET scan to see where we stand.

August Update

I wanted to give an update to all who are interested. I've actually been putting this off hoping to have a miraculous attitude change. But I've realized, its okay to be honest with how I feel at this point. 

I had my bi-weekly appointment this last Monday. My blood work came back a little concerning. My white blood cell count is a little low. Right at 3. Normal range I think is 5-11... ?? Somewhere in there. Anyway, so that just means my body isn't at its full and normal capacity for fighting bugs or infection. I will just have to be mindful of that. My doctor requested more blood work to be done this past Friday to make sure my white blood cell count hadn't dropped further, it did not. I am stable for now. If it does dip lower, I will likely have to get some injections and antibiotics to help my body. The other main concern at my last appointment is this weird rash I have on my hands, legs, and head. It itches like crazy! My oncologist wanted me to get it checked out by a dermatologist, which I did this past week. The conclusion was they don't know what it is, but think its from chemotherapy. They wanted to do a few biopsies on the rash. Which would mean a few small incisions with a few stitches on each. I am a huge freak about this type of thing and asked if there was any way around the biopsies. The conclusion to this story is that they are going to wait for now, and if the rash doesn't clear up soon, I will have to do the biopsies. I am sure they are no big deal, but I am so tired of all things medical procedures... I am asking God to rid me of this rash. I think physically, that sums up how I am doing. Amazingly, I have kept some hair. I have very thin, short hair. You can see my scalp easily. I am just starting to wear hats. I haven't busted out the wig yet. I hate to complain or to show my vanity on this topic, but my biggest insecurity is coming from the weight I have gained. I wont go into detail but its substantial and it makes me feel insecure. I would like to blame it on the steroids, or the other vast amount of drugs, or maybe the change in my lifestyle, or maybe just struggling with being down. Who knows?? Everyones response to that concern, is to just worry about getting well for now. 

I mentioned my attitude earlier. My attitude should be this: I have cancer, BUT I have had a great success so far! Cancer is in remission! I have full time help around my house and with my child. I have a supportive family and church. Things couldn't be better for the circumstances! But, that hasn't really been my attitude lately. I've started getting anxiety on the Sundays before chemotherapy. I start thinking about everything that will happen, how it will make me feel, and I start dreading it. I make myself physically ill with just the thought. The week of chemotherapy, I struggle with knowing if my extreme fatigue is from the chemotherapy or from being down in spirit. I struggle with motivation a lot of days because I feel sorry for myself. I keep trying to remind myself of all the people that have to walk this road, that don't have a hopeful out-turn. I try to remind myself of kids that have to go through this. At least I understand why I am going through this. And most importantly, I try to remind myself of the spiritual truth. That even if I lose my body here, my soul is forever grounded with God in glory. 

God is good to me. I lack nothing. But my attitude is poor lately. Truth, the end. 

PET Scan Update

This week we were given the best news possible regarding cancer. It is in remission. I had a PET scan done on the 10th and we were given the results on Monday, no seen cancer masses. Wow! What great news... On my first PET scan there were cancer masses in my lymph nodes, in my chest, and in my spleen. Now there is nothing shown on the PET scan. The chemotherapy is working. My first question to the doctor was, ok, so can I be done with chemo then? Short answer: no. He explained that just because we do not see any cancer masses doesn't mean the cancer cells are not there. They are there, just small. The PET scan doesn't show anything smaller than a pea size. They also know from experience that just five infusions will not fully rid my body of the cancer. They know it takes much more chemo and time. This is my understanding of the conversation we had.  But for now the news is that what we are doing is working. Cancer is being rid from my body. We are so grateful for health and for the answers to prayers. We are thankful that although I am on chemotherapy, I am well. Well enough to do normal daily activities, well enough to see friends, well enough to eat and enjoy food. Thank you God for this mercy.

Update

I had my fourth chemotherapy on Monday. Same routine- labs, doctor appointment, then infusion. I saw a different oncologist this time because my doctor is on vacation. We really liked this doctor. He was honest but his honesty was in our favor because the news was good. He said my blood work looked good. He said it didn't look like the blood work of someone going through chemotherapy. This was encouraging. He also gave me the advice to "live my life". Within reason of course. His advice to live my life came after Ben and I asked several questions. Should we do this? Should we not do this? He was a little more laid back about activities than our normal oncologist. He also scheduled a PET scan for July 10th. This scan will tell us where we are at with progress on the cancer. To remind you there is cancer in three areas of my body. My neck, chest, and spleen. Our hope is that the areas with the cancer are much smaller. We already have some proof of this from my chest x-ray I had a few weeks ago. The area in my chest had already shrunk some. If the cancer is responding well, than the chances of them getting rid of the cancer are great! This is good news! If the cancer is responding well, I will only 8 more infusions, then done!

Our life these days looks fairly normal. I have chemo every two weeks. The week following I am sick. Mainly with mild nausea, exhaustion, a lack of sleep, some weakness, and just an overall icky feeling. My second week I almost start feeling normal, or what I remember normal to be. I have been able to meet with friends, do some mild activity and enjoy our life. Things are going well. For the circumstances, we are doing great. I just want to say again to all who are praying... thank you. I really need you all.

Health

You know that feeling when you are sick for several days and then you get feeling better and its like you've come up for air? And you thank God you are healthy... And you swear you will never take your health for granted again? I have been there. Some of my most fervent prayers have been while sick. I am reminded of this today.

Today I am discouraged. It's been fairly easy to stay up beat about all of this. Great odds of beating this type of cancer. But no one likes being sick.  And today after feeling sick for five days straight, I'm a little down. Five more months of feeling significantly ill for a week. Five. more. months. Trying to stay encouraged, trying to stay grounded in truth. I am tired of being tired. Tired of feeling sick. Tired of all the other symptoms.

I ask for your prayers and encouragement as I face being ill each chemo round. It's not been easy even though I am doing better than most.

The new normal

I've done three infusions. I'm starting to find a new normal in life. We've found a routine and we are starting to know what to expect. Chemotherapy day is usually uneventful. We start with lab draws from my arm. Then we meet with our oncologist. Then the infusion chair where the chemotherapy is administered. The lab draws are still a struggle for me, you would think after all of this I would have conquered my irrational fears, but I havent. Meeting with the oncologist today gave us more hope for healing. He showed us my chest x-Ray from last week, and you can see in the X-ray that the mass in my chest is much smaller, you can almost not see it anymore. So we know the chemo is working! I had a chest X-ray, pulmonary function test and EKG last week due to some intense chest pains. It turned out to be heartburn but they needed to be sure because the chemo can cause problems with the heart and lungs. The days after chemo are usually spent in bed or resting. I feel my worst those first four days after chemo. Mild nausea, an extreme exhaustion, insomnia at night, sensitive skin, mouth sensitivity, and a few other more personal unpleasantries.
Cora is doing great with my mom caring for her. I'm getting to rest whenever I need. Mom is keeping our home and helping with whatever we need. It's been such a relief to have someone to watch Cora for chemo days, and all my other appointments. I also get to rest whenever I need to! I know, you don't have to tell me, we've got it made! :-)
If you're interested, well, even if you're not, I'm going to share a few things we've learned lately. I think the first is that our community, church, friends, family, and even strangers are showing us God's love for us. Because God loves us he is using his church, his people to reach out to us and love us. This is humbling, this is overwhelming. Bringing us a meal, sending us cards, praying for us, sending a care package or flowers, gifts, helping us, in all forms this is God using his church! What a privilege! I am just convicted and overwhelmed in one. The love is awesome, and we need it!! But I'm convicted because we all need it, right? The couple with too many responsibilities that feels they are drowning daily, all those tired mama's out there that feel desperate and overwhelmed, those with health ailments, broken relationships, an aching for a spouse, loneliness, marriage difficulties, loss of a child. We've all got hurts and trials. We all need love. I think what cancer has taught me most recently is that there is no end to the love that needs to be poured out on all people. I pray that God will use me like he has used so many of you in my life! The need is great, find someone to love!

Post chemo round 2

I am humbled and grateful if you care enough to read this. Thank you for the love and support. Thank you to anyone that has called, texted, brought us meals, sent care packages, cards, volunteered in our basement, flowers, I know there is more, but my mind is foggy. All of you that have offered to help in any capacity... thank you. I would be depressed and struggling without support from people.

I had my second administering of chemotherapy today. It went way better than the last time. I did not pass out and the actual needle hurt less. My wound from the surgery placing that port is better too. So I am not as sensitive in that area. Chemo was uneventful. Ben and I talked and read, and watched some TV. The only news worth sharing from today was meeting with our oncologist. He said that my blood counts looked good. My organ function isn't being effected from what he can see on the blood test. My lungs are doing well too. There is a chance of lung damage from one of the chemo drugs, and it doesn't seem to be a factor for me at this point. He asked about all my symptoms, and it seems I am doing unusually well. In fact, after I answered his questions about how I've felt in the last two weeks his response was that I am doing better than 99% of his other patients on chemotherapy. He also did an exam on me and could not feel my lymph nodes at all, which two weeks ago were bulging from my neck. This is also good news because it means the chemo is working. :) We were encouraged today. I am bracing for a rough few days post chemo, but thankful for all the good news today. I know people are praying for us. God doesn't always answer prayers how we would like, but for us, he has been merciful and is answering our prayers.





Your righteousness, God, reaches to the heavens,
    you who have done great things.
    Who is like you, God?
20 Though you have made me see troubles,
    many and bitter,
    you will restore my life again;
from the depths of the earth
    you will again bring me up.
21 You will increase my honor
    and comfort me once more.
Psalm 71:19-21

Good morning. I have a brief update. Yesterday started day one of my treatment. A chemo cycle for me is 28 days, I receive chemo on day 1 and day 14. Twice a month, for six months if everything goes okay. After two cycles, or four treatments, I will have another PET scan so they can see if the cancer is responding to the chemo. If it is, I will continue for four months. If it is not responding like they would like, I will be on chemo much longer. He didn't even talk about how much longer because I know it would be discouraging. So we are hopeful. Six months, please God.

Yesterday started at 9:30. We drove to the hospital to start my first chemo treatment. I prayed while Ben drove, asking for peace and strength for us. Shortly after we checked in, Ben's parents met us in the waiting room. Support and prayer while I was in there for treatment. We were blown away by their love and kindness. If you don't know them, they are giving to say the least. To their children, but to everyone! They both needed to be at work, but made a way to be there. I did't know how long they would stay, but they ended up walking us out at 2:30. Five hours, wow. Anyway, back to chemo, we did have a rough start. They needed to access my port. Instead of administering the chemo through a vein, they are administering it through my port. The port looks like a triangle, its right under the skin in my chest. There is nothing hanging out of my skin, they just puncture through the skin and are where they need to be. I dont understand it completely and I find it pretty disgusting. I have never donated blood, and have a really hard giving a blood sample at the doctors office. I have always have felt this way. I have fainted in the past at the doctors office. It all makes me a little squeamish. The past two weeks, I've done well for all my blood samples, IV's, and surgeries. But yesterday for some reason I lost it. As she was poking me and then flushing it, I started breathing heavy, sweat broke out, and then I was gone. I woke up with my feet up and a doctor standing over me. Later Ben told me he was yelling my name and trying to shake me awake. All that to say, next time they are going to have me take an anxiety medication before I get there. That situation started our morning but it got much better after that.

If you have ever been to a infusion center for chemotherapy, you can visualize it with me. It's kind of sad and hard place to be. Many people suffering the effects of chemotherapy and cancer sitting together in a room receiving treatment. Most of them without hair. Ben and I struggled as they started me on meds. We were afraid. Ben looked at me once and said "we are a bunch of weenies compared to these other people". Ha, he was right but I think I was the only one in there for the first time. Not much else to report as far as the chemo infusion goes, you sit there for hours as they come in and change a bag every once in a while.

As far as we have been educated, side effects vary from person to person. Some peak after several days. So, we are waiting to see how this will effect my body. So far my symptoms have been mild nausea. I am on many meds to combat nausea. The other effects are extreme exhaustion and feeling weak. I described it to Ben this way, you know when a hair tickles your face and
your quick reaction is to brush it aside, well, I feel so tired and weak that I don't brush it away. I contemplate if its worth the effort.

My mom is here to help us. This is such a relief. I don't have to worry how I will find the energy to care for Cora. I don't have to worry about anything really. We've had people meet our most basic needs and we are grateful beyond words. Food. Thank you to anyone that has brought us meals. Thank you for helping us in other basic ways, planting a garden, helping in our basement, cleaning our house, washing my hair, bringing over treats, getting me new pajamas.  Thank you for any mail, texts, and calls. I appreciate them all so much. I keep trying to find ways to repay people, but I can't so just know we are so grateful. I couldn't do this without help from people. I couldn't do this without friends, our church family, and our families. We're blessed.






Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.

2 Peter 5:6-7

Cancer, so far

A blog... Welcome to our era right? I am a little late on the scene. With where we are in life right now, it seems like a good idea to keep friends and family informed. I will just be up front that I am not a writer, I am also not great with grammar or sentence structure. Please forgive me.

So, where to start... Throughout the last year life has seemed almost too good to be true. Our daughter was born early last year. Her life is one of the greatest blessings we've received... EVER. She has brought so much happiness in our lives. Ben and I would literally ask each other if life could be any sweeter. Not only did we have the blessing of her life, I also have been given the great pleasure of staying home with her and getting to be her full time care giver. I cannot describe in words the fulfillment this has brought. I love it! Easy, no, but so fulfilling. She really has changed us.

Back to present day, recently I discovered a lump on my neck. I had it checked out and it led many, many, MANY more tests which led to the diagnosis of Hodgkin's Lymphoma (stage 3), a type of cancer. Stage 3 means that it is not only in my neck, but has spread through my chest and into some organs. For sure my spleen, but I am not exactly sure where else. Our oncologist said the spots that are cancerous are smaller. Not huge masses of cancer. Which is good. How they treat stage 1 and 2 is with chemotherapy and radiation. Because stage 3 and 4 cover more areas of the body they rely on chemotherapy alone because giving radiation to nearly your whole body is not safe. Our doctor is positive and deeply caring. This is a true mercy from God! He told us maybe having stage 3 is a good thing, I don't have to do radiation. We will do 2 rounds of chemotherapy to start. Each round is two doses or two times administering chemotherapy. So four treatments and then we will do another PET scan to see if the cancer is responding to the chemotherapy. If it is, which our doctor was very confident it would be, then we will do 4 more rounds or 8 times administering chemotherapy. Chemotherapy will start a week from yesterday. Next Monday. It will take 3-4 hours to administer. Mondays will be a good day for us because Ben has Mondays off. He will get to sit with me for several hours while I get chemo. This is another mercy. Having to go through this doesn't seem as scary with Ben. He of course is wanting to trade places with me, but just having him along as support for everything I've had to go through so far has helped me. For this type of chemotherapy its a pretty certain guarantee I will lose all my hair. A small price for getting healthy I guess. Other side effects that are guaranteed is a weakened immune system. I will have to avoid places that are likely for bugs and germs. There is also a moderate chance for infections. Our doctor stressed a few times to just let them know immediately if I was getting a fever. I guess chemotherapy is pretty hard on the body. Can you tell I knew almost nothing about chemo before this? Other side effects are nausea and vomiting. He said I will be on strong medications to try and prevent this, but there is no guarantee. Another side effect is for my ovaries to be attacked and destroyed. There is a drug to try and suppress your ovaries while on chemotherapy so that they can come back and spring to life again after chemo. It's also not guaranteed to work, but there is good success with it. They will also be monitoring my heart and lungs as chemotherapy can be hard on these organs. There are many other side effects but these are the more prominent ones we were informed about. I obviously do not have a medical background so hopefully I am relaying the information we were given accurately. If you, like me, know/ knew nothing about Hodgkin's Lymphoma the good news it is a cancer that can be cured. This is not the case for some other cancers. How they define cured is if 5 years from now they do a scan on my body and find I still have no cancer after chemotherapy, then I am cured. It's gone. This is comforting to us. Another comfort is that if chemotherapy does not work, which our doctor said would be shocking if it didn't, there are more options. All of these facts are a great comfort. I will start chemotherapy next week and unless I get sick or have an infection, in which case we'll have to push back a round while I try and get better, should last until late November. Six months. That's a long time. But here is more good news, we will have help! We already are being supported and surrounded by family, friends, and our church family. If you fall into this group, which you likely do reading all of this, THANK YOU. I cannot say this enough. I really need people, encouragement, and love right now. SO THANK YOU SO MUCH. The help I am referring to more specifically is my mom. She is planning to put her life on hold for a few months and come help out. This is huge for us. Our daughter will be cared for, we will be fed, and life will continue in our household. We do not know what to expect on chemotherapy. We do know that it will probably change my ability to fully care for our daughter. Our doctor said there will likely be good and bad days. I may be able to do what I normally do most days with some modifications, but there will also probably be days I won't be able to do much of anything. And knowing we'll have constant help is comforting. We are going to play it by ear. It's kind of hard to make plans around an unknown situation.

Well, I think that sums up the last year and the last few weeks. Both the sweetest blessings in life and suffering. That is life though, right? I have been asked how we are feeling and doing with all of this. I will say this, we have Christ. That changes everything. We have His promises. Some of which are: He has our best interest in mind. He is present and active in this situation. He will never leave us. He loves us. He has my days numbered. He is still God, nothing has changed about his power or sovereignty. He has forgiven us and promised life eternal with Him in glory one day. We can trust Him through this. My life seemed almost too perfect the last year. There would be weeks that would go by and I would only occasionally pray or even acknowledge God in the workings of life. This cancer has forced us to rely on Him hourly. To completely depend on Him for strength and peace. So can I say this is good in our lives, because He has brought us to  dependence on Him? I don't think I am ready to say that with an honest heart yet. Are we going there? I think so. I think God is preparing us to say this is good. This has brought many people, including us, to our knees.

I think that will be all for now.