Where is God in all of this – My Cancer Journey

I wonder about me, at times. Well, maybe all the time. I wonder about my faith. I wonder about me being a good person. I wonder where is God in all of this.

I pray but not every day. When I do pray, it is for everyone around me. I don’t pray for me. Even though I am now facing cancer, I still don’t pray for Jesus to cure me from this cancer. But I do pray that Jesus stays with me through all of this because I know I can’t do it without Him.

I seriously don’t think I have the right to ask Jesus to heal my cancer. I don’t think I have the right to ask that because I know God has a plan for me and do I have the right to alter that plan, whatever it may be? I don’t know. I struggle with this.

I pray for my friend who has just discovered she has multiple sclerosis. I pray that God is with her and helps her. I pray for my children and that God keeps them all healthy and safe. I am proud of all my children. They fill my heart with love. I pray that God keeps Bill safe and heals him. Bill has issues and he cannot handle them on his own. I did not think I could love a man as much as I love Bill.

I pray for all those who are hurting and sick. I pray for victims of disasters and storms. I pray for this world. I can’t believe how horrible we humans are to each other and animals. But when something evil happens, there are kind people who do not think of themselves and step out to help others. I am encouraged when I hear and see those reports.

My praying is sporadic. Not consistent. Not every day. Then I wonder if God hears me when I do pray. Some times it feels like He doesn’t. Although many people say that He doesn’t answer right away. His timing is perfect. Does it say that in the Bible? Where does it say that? I really struggle with that because there are times I have thought that God hates me. Why do I feel that? I don’t know. I really don’t know.

Emotional. That is what I am. I go from being certain that I will beat this cancer and everything will be fine. Then the roller coaster of emotions takes me to the very bottom where I hear the whisper of I may die from this. I let myself ride the roller coaster because, at times, it is just so draining to fight it all the time.

I do feel blessed. I have so many friends that are praying for me and thinking of me. I cry when I think about all the people I love. I feel I don’t deserve it. I look at Bill and wonder how he could love me. But I know God is with me because every once in a while I will feel His hand on my shoulder. I feel that He is there and this fills me with determination. Whatever I have to face, I know I won’t be alone. Yes, I have my husband, children and friends who are with me. But in the deepest darkest moments, God is with me.

Chemo Teach – My Cancer Journey

Next was chemo teach. Bill and I were scheduled to meet with the pharmacist, Jolly. I was amused by the name because I didn’t think chemotherapy was very amusing.

I was told by everyone at Levine Cancer Institute that I had to have all blood pressure readings and blood work always done on my right arm since I had four lymph nodes removed from the left side,  There would be a possibility of some kind of lymphitis or something like that happening and I would always need to be aware of having medical procedures done on the right arm forever more. Jolly reminded me about this.

Before our appointment with Jolly, a nurse came and took blood from me (on the right again – not yet feeling like a pin cushion). I was told that this would be the baseline before chemo started. She took four bottles of my blood with her.

Then Jolly arrived with a handout. She told me about the chemo drugs I would be getting. She told me about every single side affect that I may or may not experience, but probably would. We went over my health history and Jolly was happy (ha, ha) that my health history was really good. There was concern over my asthma and my osteoporosis. I was diagnosed with asthma after the allergist I saw noted that having bronchitis almost yearly was probably due to the fact that I had asthma. Hence, I now have an inhaler that has dust on it.

We talked about my nausea and that I would be given anti nausea medication prior to chemo. Jolly prescribed Ondansetron and Promethazine for nausea and vomiting. I was also prescribed Dexamethasone which is a steroid. Lidocaine is an ointment that I am supposed to put over the port site one hour prior to chemo, then put a piece of Saran Wrap over it. The Lidocaine apparently numbs the area, however, Jolly said cheerfully that some people love it and others say it doesn’t help at all. (Why does Jolly have to be so truthful?)

We talked about how prior to the chemo injections, the nurses would draw blood from me to make sure the drugs weren’t causing problems. If there were problems, my chemo treatment would be pushed off for one week. From what I remember, the first chemo drug would be “pushed” for five minutes. The second drug would be “pushed” over thirty minutes. I think I blacked or maybe blanked out at some point during this. I was relying on Bill to catch all of this but with his brain bleed his short term memory is rotten. I would have to read through the handout. Sigh.

We were told each chemo treatment would take approximately three to four hours. Jolly talked about Neulasta and that I would have to return to the hospital the very next day for this injection. The commercial about Neulasta is not realistic, at least I am not comfortable with it. I would prefer to return to the hospital and have a nurse make sure this drug is being properly injected and that I am getting the full dose. What is Neulasta for? By this time, I am really hazy about all the drugs and just know that the Neulasta will probably make me sick to my stomach.

Again, Jolly cheerfully went over every side affect that I could potentially have, along with the fact that the risk of infection is extremely high during treatments. Oh joy, Jolly! I got it. During chemo, I really need to see my horse.  I will wear a mask and gloves, if I have to, to see my horse. Gizmo and my children and my husband are good for my heart. Although, Jolly told me I might become irritable. Lucky Bill. He is hoping to go back to work soon.

Bill and I left the appointment, our heads swimming with all the information we were given. The next day, I was scheduled for my probe, I mean port, placement. I am convinced the port also has some kind of tracking device in it. This was all becoming too real.

 

Appointments, appointments, appointments – My Cancer Journey

I forgot to mention during my appointment with my medical oncologist, I was advised that I would need a port. She showed me an image of a port and how it would look and feel under skin. She said that it would make all chemo injections so much easier. A tube would be attached to a neck vein and the nurses would just have to inject into the port. All I could say was, that is so gross!

The following week, I was scheduled for a ct and bone scan, chemo teach and port placement (I kept calling it a probe and Bill would roll his eyes – he got lots of practice with that with four sisters). You do have to agree with me that to have three appointments in a week is a bit much.

First was the ct and bone scan. Since two of four lymph nodes were diseased, we all wanted to be sure that the cancer hadn’t spread somewhere else. More needle pokes. Bill said I would end up feeling like a pin cushion (eye roll). I was given an iv and injected with a radioactive dye for the bone scan. Then I had to drink a substance for the ct and bone scan. Bill and I sat and waited for everything to take affect. A very pleasant technician passed out warm blankets to both Bill and I as the waiting area was fairly cool.

I was called in first for the ct scan. I will not forget this ct scan. The technician injected more fluid into my iv and warned me that my face and throat would get warm and that I would feel like I was urinating. She assured me that I was not wetting my pants since she had made certain I visited the restroom prior to the procedure. The sensation was indeed strange. My ears got hot. My face and throat got warm. Then I pulled my legs together as it felt really, really strange down there. But it passed soon enough and I was moved into the machine. The procedure lasted approximately ten minutes, the iv was taken out of my arm and I went into the waiting area.

We were told that the bone scan would be done in 90 minutes so Bill and I decided to head over to the hospital cafeteria to grab lunch. I hadn’t been allowed to  eat anything prior to the ct scan.

I should also mention that I have osteoporosis. I had been taking Fosamax once a week but in 2016 asked my doctor if there was something I could take once a year. I had seen television commercials about yearly injections and thought this might be better for me. I would not always remember to take the Fosamax so my doctor suggested Reclast. I was told by the medical oncologist, my osteoporosis is something they would have to watch.

The bone scan came next. Bill was able to sit in the room while I was in the machine. He found it interesting. Since I was told that I had to lie completely still, I fell asleep. It was a very small tube that I was put in but I had no problems with just closing my eyes and falling asleep. Thank goodness, I did not snore. This procedure took approximately 30 minutes.

We were then released and the technician wished me well. He said he hoped that I would receive good news. I really appreciated his words. Later that day, we found out that both scans came back clear. On to chemo teach and my port placement.

Medical Oncologist – My Cancer Journey

On to the medical oncologist. Let me tell you, having two or three doctor appointments in one week is not normal for me. At the end of this appointment, my head was pounding with information loaded but not quite wanted.

I will be with the medical oncologist for the next five years. I was told that my cancer was estrogen based which is good. From what I understand, this type of cancer is not aggressive, even though by the time my lumpectomy was done, it had gone into two of my lymph nodes.

The medical oncologist is putting me on 20 weeks of chemotherapy. I will be on Adriamycin and Cytoxan which is done by IV once every 2 weeks four times. Then I will be on Taxol which is done by IV once per week for 12 weeks. From what I understand I will be given Neulasta after the adriamycin and Cytoxan. This will be followed by radiation treatment for 6 weeks one month after the chemotherapy is completed.

Bill and I have not heard of any of these drugs except the commercials on television for Neulasta. I am really put off by this commercial as this woman has all her hair and she looks like everything is just hunky dorey. Yah right. How does she not have any of the side affects I was told about?

I was told by the medical oncologist that the first eight weeks will be rough. I will lose my hair. I cannot have my gel nails anymore because my nails will become brittle and break. I will have nausea and probably vomit although they will give me drugs to combat these symptoms. My teeth will be sensitive and possibly have bleeding from the gums so I will need a soft toothbrush and Sensodyne. By the time I get to the Taxol, I will lose all the rest of my body hair. The Taxol will make my bones ache.  I was told to be super aware of infections. I will need to thoroughly wash my hands all the time. Where does the woman in the Neulasta commercial get off by lying to us?

The medical oncologist drew pictures and made notes for me. She gave me a copy of her notes. I was told that since my cancer was estrogen related, I would be given drugs to suppress the estrogen levels in my body. I think the drug is anustrozole. This will continue for five years.

Information overload or rather, oh my! I have never been on so many drugs. I asked to see the area where I would have my chemo treatments and the doctor called my nurse navigator, Meagan.

She cheerfully took Bill and I upstairs to a room with six or seven lounge chairs. The room was bright and cheery with windows. A pleasant enough room where I will be for approximately three to four hours each visit. There is a small kitchen with various drinks and I can bring food. Each patient area has a curtain for privacy, should I want it.

Meagan was sure to give me information on support groups. Through the cancer institute I can have healing touch therapy, attend support groups, go to yoga classes, get counselling, attend various learning sessions which are all free to patients. Bill and I left feeling just numb. This is realer now. I really have cancer. But, but I just feel far too healthy to have cancer.

I don’t know how my body is going to react to all the drugs. I am such a lightweight when it comes to drugs. I tend to get upset stomachs and diarrhea from various antibiotics. I fall asleep from just the slightest sedation medications. I vomit after anesthetics. My body struggles for two days after sedations or anesthetics.

I was told to drink a lot of water during chemo. Well, I can do that. I was also told to eat smaller meals and more often. I can do that as I tend to graze all day, eating just small meals. Besides anything chocolate being my favorite food of choice, I love eating nuts. What do the people who made the Neulasta commercial think they are doing? That is not real, although I will try hard to stay as normal as possible.

On to the next appointment.

Oncologists – My Cancer Journey

Boy! Did I mess up with my understanding of what the radiation oncologist and medical oncologist does.

I met with the radiation oncologist first. This doctor let me know the difference between what he does and what the medical oncologist does. He called himself the clean up crew. He finishes up the cancer treatment after the medical oncologist.

He explained to me that I will see him for 6 weeks of treatment. I will have radiation treatments five days per week, Monday to Friday, for six weeks. Since two of my lymph nodes had been diseased, not only would the area where the tumor had been have radiation, but the lymph node area would also be treated for radiation.

I was told that the radiation could make me fatigued. Or not. He said that my skin would probably peel from the radiation. I would be given cream to apply prior to treatments and after. The entire procedure would take approximately 15 minutes. Set up usually would take approximately 15 minutes.

He told me that the medical oncologist would be looking after my chemotherapy and that I would be with her for the next five years. They would not start radiation treatments until one month after the chemotherapy would be completed. Since neither one of us knew what the plan was for chemotherapy, he said he would be in contact with the medical oncologist to know approximately when to expect my treatments to begin.

On to my next appointment.

Baby B – My Cancer Journey

My surgeon told me she was arranging appointments with a radiation oncologist and a medical oncologist. She also said I was a candidate for chemotherapy. At some point, I lumped the radiation oncologist into the doctor who would be doing my chemotherapy as well. I wasn’t sure what the medical oncologist would be doing. But I dutifully registered the appointments.

Prior to these appointments, I booked a trip to Ontario to visit with my oldest daughter who is expecting my first grandchild. Her friends had scheduled a baby shower for her and I wanted to be part of that. My parents are also living in Ontario and I wanted to visit with them.

I am so glad I was able to see my parents and daughter. My parents are aging but are doing well. My mother has dementia and has good days and she has not so good days. My brother lives with them and is helping them out as much as possible. My father is doing all the day to day chores and taking care of my mother. I wanted to send in a maid service for them but they adamantly refused. They did not want a stranger coming into their apartment. My father is very spirited for his age but he did look tired. I wish I could do more for them.

The week with my daughter and seeing my grandchild growing within her was special. Baby B is due in October. My daughter had a mid wife appointment and I went along to the appointment. Veronika will have her mid wife deliver the baby but it will be done in a hospital. There is a plan for a close friend to go with Veronika to the hospital should Baby B decide to arrive before daddy is able to be in Canada. Daddy is currently working with the UN in South Sudan and cannot get to Canada until October 17.

I was able to wash baby clothes, clean the kitchen and help put away kitchen items from my daughter’s wedding. We accomplished a lot. I cried every time I looked at the little baby clothes.  I was happy I could help my daughter before Baby B arrives. My daughter was happy I could be there. I treasured the time with my daughter.

Feelings – My Cancer Journey

From the very beginning, I was in disbelief. How could I have cancer when I felt so good. I was healthy. The only prescription medications I was on was Pristiq for my depression. I was doing Reclast, a once per year medication for my osteoporosis.

I had started a weight loss program with Medi Weight Loss. I was gradually losing weight and feeling so happy with how I was doing. I was eating healthy, taking vitamins, exercising and newly married to the most wonderful, sexy, handsome man in the world. Just my opinion on this but my opinion is all that matters about Bill.

So okay, I was in denial but I would rather call it disbelief. I carried on with my daily routine. Riding my horse, taking care of the dogs and cats, taking care of the house, and taking care of Bill. I only had every other week appointments with my surgeon. But everything seemed to crash in on me the weekend before my scheduled ct and bone scan.

I should add that while Bill was in the hospital, my ex collapsed suddenly in front of my youngest daughter. She called me in tears. Apparently, the ex had pneumonia which then went to sepsis. When the ex fell, he also fractured his skull. I was upset for my youngest daughter, as she had to deal with her father on her own. My oldest daughter was 8 months pregnant and living in Canada. She could not physically help out. My son and his wife were in Chicago and making the move to Maryland. They could not physically help out. The ex is extremely needy and not a good patient.

The ex has a high level position in an international company. He had been making business trips to China and India. He does not take care of himself. So I was not surprised when he collapsed. I was hurting for my children who had to go through this on top of my cancer issues. As well, the ex is suing me and I am having to deal with court hearings, etc. I am trying to deal with all of this as well.

I fell apart the weekend before my ct and bone scan. I cried. And just felt so hopeless. My incision was not yet healed and my surgeon squeezed out more fluid when I saw her again. But she said it looked much better than it had. The incision grosses me out and I do not care to examine it closely like my surgeon and Bill.

I let myself cry and be sad. I called my best friend and just wanted to hear her voice and talk to her. That helped. I went to church. I have not yet found a church home but I think the church I have been going to will suit me. I can’t do this alone. And while Bill has been with me every step of the way, I am tired. Emotionally and physically. Bill still needs care.  I just feel the weight of the world on my shoulders. I was scared and nervous for the upcoming bone and ct scan. But Bill and I needed to know. We needed to be sure.

Cellulitis Infection – My Cancer Journey

During Bill’s hospital stays, I developed cellulitis infection at the lumpectomy incision. Whenever I walked or moved a certain way, I would hear the glug, glug sounds like water in a balloon. This was more unnerving than the redness developing in my left breast.

At my post surgical doctor’s appointment, my surgeon examined my breast and frowned. She said cellulitis was more common than she liked and she said the sounds I was hearing was fluid building up. She said this is something my body was doing to heal. She said she would give me a prescription for an antibiotic for the cellulitis.

I was told to lie on my side while she examined the incisions. Then she told me she would be squeezing out the fluid. I just about passed out. It was the squishing sound I was hearing that did me in. Bill stood up and held my hand. He watched. I did not. My doctor managed to squeeze out a lot of fluid. It did not hurt. It just grossed me out. When my doctor found out that Bill had been a corpsman with the marines, she was happy to show him how to take care of my breast.

It was during this visit that we asked again about the surgery. The tumor had been at 1.9cm and had been successfully removed. Four lymph nodes had been removed. Two of them were diseased. She did not know if the cancer had gone elsewhere. I was scheduled to see the radiation oncologist and the medical oncologist. I was scheduled to see my surgeon again so that she could check on my incision. I was told I was a candidate for chemo. Chemo and radiation could not start until my incision was healed.

For someone who has not needed to see a doctor except for physicals and perhaps a couple times through the winter, suddenly needing doctor appointments three times per week is not exciting.

Bill’s Journey during My Cancer Journey

The neurosurgery PA and NP kept Bill in the hospital until Tuesday. He was told he could not go back to work for approximately 4 weeks and could not drive. Great.

He was given prescriptions and told that the hairline fracture at the back of his skull would heal in approximately 3 weeks. The subdural hematoma would heal in approximately 4 to 6 weeks.

Bill began throwing up Tuesday night. He did not stop. I lay in bed and listened to his vomiting, not being able to offer more help than that and I was surprised that I was not hurling with him. Watching or hearing someone vomit is not a strong suit of mine but I managed to hold it together. Mid morning Bill called the neurosurgeons about the vomiting and he was told to go to emergency.

Oh joy! That afternoon at the emergency department was like a gong show. Bill was put on a bed in the hallway under direct lights by the nursing station. He was given morphine and nausea medicine and told that he would be taken for a ct scan. Bill slept and I tried to keep my eyes on my phone, playing card games while patients were being wheeled in and out of emergency rooms surrounding us. One young man who was lieing in a bed close to Bill needed stitches to his chest. The young nurse sat on a chair beside the bed and proceeded to stitch him up in the hallway.

Bill was taken for his ct scan and when he returned, we were told that he would be admitted to the hospital. Seven hours later, he was settled in a room. While the bleeding had not increased, it seemed to have settled. However, his blood pressure was high and the neurosurgeons wanted to keep an eye on him. I sighed and went home.

Bill was kept in the hospital for 10 days. I was glad he was there. Every day seemed to be a different issue. One day his blood pressure was high. The next day his blood pressure was fine but his sodium levels were very low. It would swing back and forth between the blood pressure and his sodium level every day. But finally his blood pressure settled while his sodium level remained low. On the day we decided to go home, the neurosurgery team was good to let him go but the medical team did not want to release him because his sodium level was at 129. They wanted to wait until it was 130.

We went home with the agreement that he would have his blood checked Friday and again Monday. On Friday, his sodium level was 130. On Monday it was 134. Now the doctors were happy. Bill is still on disability. He cannot drive. While the pain in his head is not as severe, his dizzy spells are continuing. Bill’s head injury and bleeding in the brain outranks my cancer. Can you imagine that?

Things Go Bump In The Night – My Cancer Journey

I slept the rest of the day after my lumpectomy. The next day, Friday, I was still feeling the effects of the surgery. I told you I was a lightweight.

I was still urinating blue. I took a picture of it and sent it to my kids. They were not really impressed. I told them I could have sent them a picture of my Madonna boob which they really appreciated that I hadn’t. They were impressed with my blue pee.

Bill was extremely restless Friday night. By the time he decided to go to bed, I couldn’t sleep and I went out to the family room. At 3am, he woke me up, told me he had to watch a television show. He didn’t know what it was, but he had to watch it. He sent me in to the bedroom, and he looked for what, I don’t know.

When I woke up in the morning, he had fallen asleep on the couch. I turned off the television and made breakfast. I was not feeling well and Bill was quiet when he finally woke up. He had a small bruise at the corner of his eye which I noticed but didn’t say anything.

Early Sunday morning, Bill woke me up told me to look at his face. There were large  bruised circles around his eyes. I got up and told him I would take him to emergency. We both got dressed and we left in his car.

We were taken in to emergency rather quickly. Bill was examined and they then said they needed to take him for a ct scan. He came back from his scan and we were told he had a fracture in the back of his skull and had bleeding on the brain. Bill was immediately sent to the main hospital in Charlotte.

The doctor asked Bill if had fallen. Bill swore he could not remember falling. Although something nagged at me. Bill had been extremely restless Friday night. I do remember hearing something in my sleep Friday night. I am certain he had fallen that night. We have laminate flooring on top of the cement pad of our house.

I followed the ambulance to the main hospital in tears. Once we got to the hospital, Bill was taken up to NICU. While I was waiting for him to get settled, I texted all his family members to let them know what was happening.

Neurosurgery did further scans to make sure he wouldn’t have a stroke from the bleeding or spasms. The outcome was good. No stroke and he would be given medication to make sure he wouldn’t have seizures. The doctors again questioned the hairline fracture in the back of the skull. Bill again swore he did not remember falling. I was not surprised by that.

For the time being, Bill would be kept in the hospital and monitored. We were told that nothing would be done for the fracture. The fracture would heal on its own within 3 to 4 weeks. The bleeding would just resolve itself. He would have severe headaches. He was given several different medications. By night time, I went home exhausted, wondering what tomorrow would bring.