Day 82-84
Jackie had chemo#4 and we can say that according to original plan she is halfway through her treatments. Hopefully this is a final halfway point she ever has to face. Her session went very well except for the fact that she needs to receive five days of neupogen shots afterwards. Her only side effect is nausea a few hours afterwards and the metallic taste. She has been sucking on life savors and any type of sweets to rid the taste in her mouth. She has been sleeping quite a bit more than usual this weekend. The first day she spent more than half the day asleep.
Yesterday we were able to sit at home and talk about our lives and feelings. The life of cancer gives you no normalcy. It robs you of your dreams, goals, and plans. Your life is put on halt, with no true point of return. I have been guilty of treating as someone who is sick instead of my wife. I am constantly nagging her to eat, dress warmly, sleep etc. This is all done subconsciously. Yesterday she expressed to me that she no longer felt normal, even though she feels that way. My guilt overwhelms me for being overbearingly caring. Jackie has been robbed of a social life, a work life, and now married life. She is told to avoid the sun due to UV risks; her work schedule is obsolete due to no consistency is her treatment plan; and she feels that she is no longer a wife but a burden on me. All this has really made me think of why my actions of love have really been actions of extra stress. It really wouldn’t hurt her to skip one day ensure or even go out to Disneyland for a day of fun. I have only been a husband for eight months and a caregiver for three. I haven’t even had sufficient time to understand how to be a husband before all this had happened. All the forums, books, and advice I received on achieving a successful marriage have left out this chapter.
I woke up yesterday morning thinking how lucky we are that our situation is not complicated with children. I was trying to imagine how I would even start telling my child that mommy was sick or that mommy can not take you to the park because of the sun. There are many individuals with cancer who are in these types of situation. When mom or dad is sick, the other spouse has to pick up both roles. How would I have managed that while holding down a job? One answer may be love, but love has boundaries when a person’s mind and body are tired. I know for me, my love for Jackie has changed and matured. I am no longer in the honeymoon love where it is just the physical realm of playing make believe house. My love has become a deep concern and care for her well being. I still love her physically but my heart cries out when she is going through pain, it is excited when she has a good day, and concerned when she is troubled. Sometimes I feel I have lost my sense of self and am living my life for her. Luckily for me I know that Jackie loves me right back!

Day 81
The mood in the air today seemed stale. Whenever I feel life is getting back on track we always hit a bump or two. At least today’s bump was small and harmless. Jackie was scheduled for chemo this afternoon, hence the word “was.” She had a quick meeting with her doctor at 1:30, but didn’t get to finish till 2:30. By that time the infusion room was filled and the nurse said she wouldn’t have time to get therapy. Why are there so many individuals who need infusions. Every day we are there the room is full. I guess I am starting to believe this 1 in 5 statistic of cancer occurrence. The good news is Jackie’s blood counts are still normal; even though it was dropped from a high of 10.3 she will also be having chemo tomorrow, so really no big deal.
I went to my doctor today and she gave me a clean bill of health. She reconfirmed my chest pains to be stress related. Actually she mentioned I had a lot of stomach acid buildup secondary to stress. She mentioned activated to distress, breathing techniques, and even some antacids if this were to happen more frequently. It is the same story just from another person. At least no more worries from my wife’s side.
Chemo week is always slightly more nerve wrecking than her off week. You can always feel a little more tension in the air, because of the random side effects that can come up and bite Jackie. I know my wife looks forward to chemo because it means one step closer to a cure. Lets just keep those bumps to a minimal please!

Day 80
Chemo #4 is just a day away. Today Jackie is still awaiting a phone call from Cedars Sinai to get her second opinion. Her oncologist took another blood sample from her to check counts before therapy tomorrow. We are still trying to think of ideas to keep Jackie occupied at home. Suggestions have gone from tutoring, drawing, writing, consulting, and selling Mary Kay products. We actually had someone come over to introduce the Mary Kay line and teach her how to get set up with selling products. She seems to be keeping busy everyday with simple projects. The good thing about Jackie is she has multiple talents and can make a piece of art from one piece of paper and 12 colored pencils.
My own day consists of going to work and keeping myself distressed. I am going to get my annual physical tomorrow and get some lab work drawn. I know how important it is to keep myself healthy in order to take care of my wife. Actually, it was more of her idea to go see the doctor and discuss my stress related chest pains. That would be a pretty simple task to put both our minds at ease.

Day 79
Today was a day similar to 80 days ago. Today was a time where I didn’t have any reminder how Hodgkin’s Lymphoma had changed Jackie and my life. There were no doctor’s visits, no side effects, no low blood counts, and no sadness. Today was a good day.
Jackie has been responding so well this past week. She went to work for the first time in awhile. I was able to work along side her today at the office. It seemed like everyone missed her, and they all wanted to claim her for themselves. We had a very productive work morning and then grabbed a nice lunch at the hospital where I work. It was so nice to be reminded of how much of a young professional she is. After lunch we finished the rest of the work day. We came back home had a wonderful dinner and sat down for a movie. It was so much like old times. I do miss it and look forward to many more days such as today.

Day 78
Inspiration is a suitable word I can use to describe my wife. Seventy-eight days have passed and we still have many more to go before the finish line. Each day though, Jackie wakes up pumping her fists into the air as if she was triumphant in some sort of boxing match. She has adapted very well to her temporary lifestyle. I was very worried at the beginning how she would be able to handle being at home during the day instead of working daily. Her personality is meant to be constantly busy and as productive as possible. Yet, she has found other ways to become productive, even testing new talents that may have never been revealed without this opportunity. She has started drawing some really beautiful sketches, which seem like they are stolen from an art website. I can vouch for her that these drawings are hand made. She also picked up knitting and stuck through it until her project was done. She isn’t at home sleeping or watching TV slowly wasting her time, but she is creating and exploring life. Amazing!
It is so warming that so many friends read Jackie and my entries. We constantly have friends express concern and support towards Jackie’s fight. It’s hard to predict what life throws at you, but at least we know there are people watching our backs.

Day 75-77
It is so hard to decide when Jackie and I can go out or when it is too risky. Jackie was told that she needed to avoid most public places due to the risk of infections. She has been locked up in this house for the last week, and I can tell boredom is really getting to her. I am trying to find places to go and things to do, but each idea is usually shot down due to germs. I seemed to have gained a sixth sense towards germs. I have been sensitive to a stranger’s cough or even clearing of throat. We have been careful about even going to places like restaurants and church because of the amount of public exposure. I know she can’t stay at homes for the next four months though.
Jackie has been having very good blood counts recently after her neupogen. My mind is more at ease when she is not neutropenic. Yesterday, I finally buckled and we decided to go out for a nice outing and dinner. We spent the day going up a tram into the mountains to see the freshly fallen snow. There was an hour wait with a bunch others and we were crammed into a small tram. On one side of the tram there was an open window with wind blowing in and on the other were people breathing on you. I would wrap myself around Jackie as if I had the ability to protect her from all the bacteria circulating in the air. At dinner, we sat next to people smoking and it just irritated me that there is no human decency around anymore. I’m so glad we were able to move seats or we would have probably left.
I am glad Jackie had a good time and I know she definitely needed the air. I know she understands why I often hesitate to take her out and do many of the things we use to do outside. I come to this obsessive ritual of trying to vanquish germs around her. I take vitamin C to make sure I don’t get sick and infect her. This germ phobia has become a part of me.

Day 74
Our oncologist has decided he wants a second opinion from another expert on how to proceed with treatment. He had tried to request an authorization for City of Hope, which is a very well known cancer center sponsored by the National Cancer Institution. Since I am under an HMO, there are many hoops we needed to jump through for such a referral to go through. Yesterday they told us that an approval was given to go to Loma Linda University for a evaluation. Even thought Loma Linda is a very good institution they are not as well known for cancer treatment compared to other hospitals. That was definitely very disappointing. It seemed like such an exciting idea to go to a great facility to receive another opinion. Jackie even called City of Hope for a cash quote. They quoted us 1035 for a consultation and needed a 700 deposit. We ended up calling the doctor and asked him in a very humble type of way “do you think the information from Loma Linda would be valuable to you.” I guess he was able to catch on so he sent another referral saying they want another hospital. I called our insurance company and without any sort of pause, the lady said we do not contract with UCLA or City of Hope. I realized insurance companies do not care about your health. They think only in money. If a patient were to die before treatment then that means more money in their pockets. Anyways, we are currently getting a different referral now to another contracted facility called Cedars Sinai. At least Cedars Sinai is ranked in the top 50 cancer hospitals in the U.S.
I must vent about the insurance a lot. In this world money is god and insurance is your wallet or purse. No matter how much money you have a lack of insurance and the right diagnosis can bankrupt you.

Day 73
Can you get too much neupogen? Jackie’s blood work came back and basically her white blood cells increases 5 times. She is doing very well so they will stop injections until her next chemo session. We are trying to coordinate with the doctor to have her only take a minimal dose of neupogen to achieve of proper blood count. Jackie is still currently slightly under the weather but I know she is getting better and better. Her spirit and mood is always portrayed by the largest smiles and the biggest hugs. I think she is very excited that her counts shot up and she will not have to delay treatment next time.
I am excited for her, because I know it can be very frustrating to wait for what seems to be an uncontrollable effect of chemotherapy. Hopefully the doctors have figured out the proper method to make her treatment as effective and efficient as possible.

Day 72
Jackie is having the most pain she has experienced so far. She constantly relates it to the way elderly people experience arthritis. Her pain just shoots up spontaneously enabling her to move for a few seconds. She has been trying to stretch but I feel that the work only exacerbates her symptoms. Last night she felt like she was catching a cold as well. There was sniffling, sneezing, and slight congestion. Her temperature always reads around 97.8 degrees luckily. I’ve been encouraging her to get some rest more so she can recuperate her body.
I have learned so much and stressed so much from Jackie’s whole insurance ordeal. I have finally understood ways to weave around the U.S system and jump in and out of loop holes. I am beginning to understand are the fine print and exceptions to policies. With what I learned, I hope that I will be able to provide knowledge to anyone who may be going to similar scenarios. Today, I met someone who is suffering from diabetes and needed to start medication soon. However, he was just recently laid off with no insurance, job, or funding. This individual is trying to relocate to an area where jobs are available. I just give my heart out to these individuals. I don’t want anyone to suffer the stress that Jackie and I went through. My situation was no where close to hopeless compared to many others in this tough economy.

Day 71
After three days of neupogen, side effects always kick in for Jackie. The recap of side effects includes lots of growing pains. The bone growths come in spurts and give you a pulling effect on your whole skeleton. I can always tell when Jackie has one because she will stop in her tracks learn her back or shoulders back and give out a little sigh. She is definitely tough. The other 33 year old man who is getting neupogen shots says he has trouble getting out of bed the whole day due to the growing pains. I wonder how I would fare towards a neupogen shot. They say men, especially husbands, are the biggest babies when it comes to being sick. Jackie would probably have to comfort and take the grunt of most of my side effects. She is both strong physically and mentally.
Yesterday we got our first claim from our new insurance. This claim was for her mediport which was inserted 3 chemo sessions ago. The general surgeon, facility fees, and anesthesiologist cost a total of 13,000 US dollars. I would have been bankrupted before Jackie’s treatment ever started. I am only thankful for how much my company has supported our treatments. They are the reason why Jackie’s treatments are going smoothly. I definitely plan to work for Jackie’s health until she is in remission.
Is this my first true test of marriage? Those vows really take a literal meaning now. However, it is a pretty easy test so far.

Day 69-70
I count each day for motivation. The more days that pass by, the closer we are to finishing treatment and starting our lives back up. This weekend we sat around waiting for side effects and neupogen shots. It has been three days since chemo #3 was administered. The doctor wants 7 consecutive days of neupogen to boost up white counts. I wonder how much of the cancer has been destroyed. The treatment is so tough on her and she complains of feeling weak and nauseas for much of the day. It would be so disappointing of she wasn’t responding to treatment.
While I was with her today on a Sunday morning, there was another young male who was in for testicular cancer. He was only 33. His regimen consists of chemo everyday. How does your body even go through daily doses of toxicity? He seemed like a very nice, loved, and normal individual. Why do bad things happen to good people?
I know Jackie is bored at home everyday because she is not supposed to go out into the public crowd. I try to entertain her, but my comic routine only lasts for a few hours. She has been keeping busy by organizing, cleaning, and knitting. This is totally different from how she was before. I know how appreciative she is of having me here, but I feel that it is my duty and pleasure as a husband. I wish I could think of more exciting and fun ideas to do with her. Anyways, as the days roll on we are getting closer and closer to the end.

Day 67-68
The new treatment will be ABVD without the bleomycin, so AVD. Jackie is having trouble with keeping her white blood cells up. The doctors did not anticipate a young healthy female to have such drops in blood counts. After the doctors consulted with several specialists all over the country, the came to an agreement to eliminate bleomycin and possibly extend treatment. They will also add her back on the growth factor shots, neupogen. She has been given a heavy load of prophylactic medications such as antivirals, antifungals, antibacterials, etc. It is so overwhelming for someone who has never had to take any medications.
Jackie has the best attitudes to this sudden change of information everyday. She seems to have an understanding that I don’t have. Every time I hear that her blood counts a lower, I start worrying. Even though I know low blood counts are normal, I start taking out all the sanitation wipes that day. Jackie is definitely the center of stronghold. She keeps hope and happiness going even when each day is a new surprise.

Day 66
Today was an aimless day for most of the time. We didn’t know whether to leave our city to go back and visit family or do we have to stay here and wait. Thinking back these last 66 days, the majority of time were just like today. I never know what to exactly do or what we could do that day. Jackie had another consultation with her oncologist later in the day. We wanted to ask the doctor about Bleomying, how long she needed to wait, ways to bring up her white blood cell counts, etc. Jackie’s mother joined her at the doctor’s appointment while I waited from them. The oncologist stated that he did not want to wait and delay treatment any longer. He stated that they were going to order a fast lab count and start chemo #3 tomorrow. That was great news to all of us. We also showed the article to the oncologist for review.
So all is well on this 66th day. It seems like our oncologist knows what he is doing majority of the time. It must be tough because each individual is so different in responses.

Day 65
It seems so frustrating that treatment is going to be delayed for another week. Delay makes you doubt the treatment, outcome, and even your own body. Jackie sometimes blames herself that her blood cell counts are down due to her own body. Medically speaking, low cell counts are very normal. People tend not to believe medicine or reports though. Everyone has their own explanation of why your blood cells lower. Some people blame it on not enough meat, not enough sleep, stress, and even not enough Ensure (dietary supplement). The facts are, chemotherapy targets fast replicating cells such as cancer cells and bone marrow cells. Many white blood cells are produced in the bone marrow and therefore are attacked by chemotherapy regimen. That is most likely why counts will drop during therapy. But of course, nobody listens.
I found an interesting article talking about ABVD treatment during a neutropenic, or low white blood cell stage. As stated before, growth hormones taken in addition to Bleomycin may cause toxicity. The studied samples a group of Hodgkin’s patients who did no take any growth factors and continued them on ABVD without delaying any treatment while being in a neutropenic state. They concluded that only a minute percentage of patients suffered from neutropenic side effects and majority were able to continue treatment with great prognosis. Therefore, the study said ABVD has little effect on someone who is in a neutropenic state.
“http://annonc.oxfordjournals.org/cgi.../full/18/2/376”
This is a very informative article and brings new insight into our current predicament. We will be handing a copy of this article to the oncologist to ask him what he thinks. Also, Jackie decided she wanted another opinion with one of the specialist about her current treatment. Luckily, the new oncologist is in my current network. Thank God that I got the right insurance.

Day 64
It’s the start of another work week. Jackie is at home by herself today trying to stay busy. Unfortunately she will be without a car for today due to the fact that her engine won’t start. Sometimes it seems like problems come in waves. Last week, everything was going very smoothly. Then Boom! The car wouldn’t start today, her white cells are low again, and her chemo is being postponed. I guess I’m not too surprised but only wished that there would be a small chance her counts would be normal. It seems to me that her 4 cycles of chemo are going to take longer than previously anticipated. Chemo will probably be every three weeks from now on.
Jackie is thinking about getting a second opinion from another oncologist. From what I read, it seems everyone’s reaction is different. Most people do follow a basic protocol which Jackie is currently on as well. Everyone does ABVD for 4-6cycles and then radiation. Everyone’s white blood cells drop and everyone experiences side effects. I just thought my wife was different, my wife was stronger, or my wife would just get rid of this lymphoma by herself.
I just hope Jackie is able to understand that she is strong and she will kick this in the butt. Her symptoms are normal and having no side effects would be abnormal. Prognosis of Hodgkin’s states normally the outcome is 90-95%, and Jackie is on her way to normalcy.

Day 61-63
This weekend Jackie and I spent a quiet but fun time together. Jackie is so full of energy and being at home must everyday must be such a downer. Her personality consists of keeping busy and active. I, on the other hand, can lounge around the house being lazy or spend a busy day out. I found myself trying to think of events and ideas that Jackie and I could do to make the time pass. She was told by the doctor to stay away from public places. So many things such as movies, parks, and events that we use to visit cannot be visited anymore. Lately, we have been spending more time shopping, watching movies at home, puzzles, and even experimenting with golf. I’m hoping to find something enjoyable and safe for both of us to have.
This week is chemo #3. She took her 4th set of lab tests on Friday and will see the doctor tomorrow with results. If all is well, she will be having her infusion Tuesday. We are hoping last times lab result were a fluke. Hopefully her white blood cells remain in a normal range and she does not have to be put on a higher alert. She feels fine and her hair has stopped falling out as much. Everyone is in good spirits in this household and pray to remain this way. But tomorrow holds another day…for better or for worse.

Day 60
Jackie came back home today to take her pulmonary function test. This test measurers your lung capacity to assess any lung damage. Bleomycin has a tendency to cause lung damage. I have read articles stating that Bleomycin works early on in treatments. Many doctors choose to take their patients off the drug towards the end of the treatment. Chemo treatment is a fragile balance between making sure the cancer cells have eradicated and keeping the risks of harming your body low. Jackie is only on treatment number 2, but she is responding better and better each day. Next week, if her blood count is normal, will be the third infusion.
Coming back home from a busy day a work and seeing a smiling face of your wife must be the best feeling. Even though it was a mere three days, the time seemed longer and slower. Maybe I still have a bit of my honeymoon stage in me.
Her hair has started to fall out minimally. There are more pieces found on the ground, but still able to be counted on my fingers and toes. Her rash has subsided and her skin is actually getting better from my observations. I wonder if the steroids that are mixed in with the treatment control her eczema better. I have read so many different blogs and personal testimonies on the side effects of chemo. I don’t ever see much of a correlation except nausea, hair loss, and possibly constipation. Every infusion results differently and every day is a mystery that awaits the next.

Day 59
My mind often drifts and wanders after a day of work. I started going through some wedding pictures and ended up watching my wedding slideshow. Even though my wedding was only eight months away, I feel that the stages of marriage have flown by. My honeymoon stage has definitely been reduced. I no longer feel as much of the sappy and mushy feelings felt during this time. Instead, I have advanced to a feeling of true love. Jackie’s well being is the most important thing to me. It is my existence and my obsession. The life from my wedding day is long past. So much has changed, my mind has matured, and my marriage has become real. I must have skipped a few years since those eight months, hopefully I didn’t miss much.
Jackie’s chest x-rays came out negative. So far, so good. Her second treatment seems to show a lot less side effects than the prior. I continue to cross my fingers. She will be going in for another pulmonary function test. I like to think the doctor’s are being extra careful with her because she is my wife. Due to this sudden appointment, Jackie will come back early. I no longer have to ponder about unchangeable events.

Day 58
The second day of alone time was a lot like the first day. I woke up to spend the 9 hours at work. I don’t feel like there is any urgency to return home, so I take my time driving home. Once home I make myself a simple dinner and waste the rest of night away before bed. Life without my wife is very slow and stagnant. There is definitely nobody to run home to, nobody to do things for, and nobody to love.
Today I was calculating my monthly expenses to make sure I am in tune with reality. The expenses have remained steady but income has dwindled by half. Times are definitely tougher and money is definitely dwindling. But to tell you the truth, I don’t care. All this is considered material and temporary. I want my wife to get better and live her life. I feel life has robbed her already with Hodgkin’s, why should she be robbed of happiness. Plus, money is replenishable. Both Jackie and I are young and well educated. It is just a short few months before we will be able to establish our career, family, and life. In the meantime, I can pick up the slack. I am definitely young and capable. Enjoy life, celebrate each moment, and be grateful what I have. Life is what Jackie and I will make it out to be.

Day 57
I’m going to be alone this week. After a long debate on whether or not Jackie should go home or stay here with me on her off week. I did not want Jackie to go due to obvious reasons. However, I did not want Jackie to be alone during the day while I’m gone. So the dilemma was between my own selfish desires or the well being of my wife. Once I put it that way, the decision was easy. At least, Jackie won’t be gone long. She will be back in five days. I miss her very dearly but it does give me some alone time to self reflect and retreat to my quiet time. It is eerie how quiet things can get by oneself. I sit here pondering on these last 2 months with not a single distraction around. The silence in the room is a bore and makes me lackluster. Life is not meant to be along. I was listening to a Harvard psychologist talk about “happiness” today. “People who are in relationships are more likely to be happy.” Personally, I can concur. I have never known what self sacrifice is until I got married. I have not been able to comprehend love before until marriage. As Jackie and I are facing this trial in our life, I find myself closer and more in love with her. I live my life for my wife, and it makes me happy. Because of my wife, I can keep pursuing happiness.

Day 56
Quiet time. Life has been in full swing for the last two weeks. People call morning and night from all around the world for the past two months. Every conversation I have always ends up on the subject of Hodgkin’s lymphoma. I have explained the same story repetitively. I know sometimes friends and family do not want to bother Jackie, so they call me instead. I really do appreciate all the concern I get from everyone. You really see who earnestly cares and love during this time.
Today my mother in law left to take a break. I’m glad she gets time off to break from the constant concern and worries that come along with Hodgkin’s. I am also thankful to be able to enjoy the alone time I have with my wife. It seems so simple, but it is so treasured. I miss the shopping trips to target, the coffee shop chats, small dinners, and even watching a movie at home. These are all basic but so cherished. This is my therapy. Life definitely needs it’s balance.

Day 54-55
Chemo #2 has been going very well; Jackie hasn’t been struggling with any problems. She has been staying at home everyday trying to avoid sun exposure. Everyday it is just watching TV, cooking, and sleeping. I hope she can do more soon, but its better not to take any risks.
This new years was very uneventful. It was low key with just Jackie, her mother and I. The atmosphere seems a lot more unenthusiastic when a family member is under treatment. I cannot say I have too many new years’ resolutions so far. My obvious resolution is to support and care for Jackie and she recover.
As for myself, stress is getting to me. I am very lackluster and troubled. I can’t figure myself out whether I am stressed out or just not being realistic. I feel that I am pressured by work, care giving for Jackie, and trying to deal with the stress that comes from family. I have not been able to explain or express myself to anyone since this whole ordeal started. I felt that I was mentally ready to handle all of it. The more I denied myself help, the more exacerbated my stress began. Today, I think I had a slight break down. My wife is not only a strong character inside but also a great spouse. She is able to help me share myself and express my stresses. I felt all alone and lost at first, but I guess I have to learn how to open up. I learned that is not unmanly to ask for help when needed. If is more self destroying to keep stress stored up internally.