Sunday, March 27, 2016

Being The Flower

To those of you who celebrate Easter I hope it's happy. To the rest of you, I hope you're having a wonderful Spring day. I wrote the following as my Facebook status:

Sometimes you just have to ignore the rubble in your surroundings and notice that there's a flower growing right in front of you. It doesn't see the destruction. All it cares about is the sun's warmth. Today I want to be the flower.

I've been through a most difficult 6 months. The only reason(s) I'm not lost is because I have wonderful people who care, and I have Faith in God. (Sermon over)  Battling the darkness and depression has often been a second by second thing. Sometimes I win, but others (many more) I've lost. It's so much more than Jonathan's cancer. My long-term Therapist/Psychiatrist retired in January, and my closest female friend moved on to bigger and better things (a high paying job) in September.  Yes, I'm happy for them, but my happiness for them isn't enough. Those are just a tiny part of what has brought me down, but this journal entry isn't intended to be a pity party.

I have difficulty in admitting my weakness and asking for what I need. Fortunately, there are people who know that the more I push away, the more I need whatever it is. I have friends (and I don't use that term lightly) who have only known me since all these changes took place. They don't realize how happy/crazy/unedited I can be. Well, today I'm gonna be that flower. It's not going to be easy. I've been working on being that flower for the past few weeks, and I've failed miserably. Still, today is a new day, and I have managed to expand my horizons a little bit. I'm focusing on those things.

Today I am a flower. I am The Flower.

Monday, March 21, 2016

(3-21-16) Twelve Days Post Bone Marrow Transplant

I held off on writing this in hopes that I'd have good news, and everything would be neatly packaged.  I temporarily forgot what a cruel sadistic bitch cancer can be. I'm not wanting to be "Doom and Gloom" either. Still, the truth/the facts need to be shared, if only so I can relieve myself of the burden that I'm carrying. I'll also do my best to share some of the brighter moments in my life here because I want my readers to know that I do have a few good things going on. If this seems jumbled at times, please understand that I'm running on empty and I really should be in bed. Speaking of bed, I'll start with the good news that my long-awaited CPAP supplies arrived this week. My tubing was full of holes thanks to one of the cats, and I couldn't breathe. I've managed to sleep really well since receiving the supplies 3 days ago. The only "bad" news is that they are no longer completely covered under my new medical insurance and I had to fork over 20%. Still better than paying full price!

Bone Marrow Donation Day 1 (3-8)

Up before the buttcrack of dawn (4:15AM) to pick Shilo up from work in Hollywood, then drive home to Long Beach, get Daniel out of bed, feed him 2 bananas (for the potassium) and have him take 5000 mg of calcium in addition to all his other medications and a light breakfast and get him to City of Hope at 7:45. Naturally, the traffic wasn't cooperating, and I was having a hissy fit. Still, we got there in time, and Daniel managed to put up with the IV's in both arms. One to remove the blood and stem cells, the other to return the blood, calcium, and saline solution. Once he was settled (an hour later) I took a walk to the cafeteria building and grabbed breakfast (scrambled eggs crisp bacon and oj) As I walked back to the building where Daniel was, I got a call from my girlfriend telling me she had arrived and was waiting for me. It took everything I had for me to not let go and just cry. She spent most of the day with me, and even went to visit Jonathan. She also drove me to Smart & Final so I could get a large box of "Cup of Soup" for Jonathan because he was having difficulty swallowing and couldn't hold down any food. She had an appointment later in the afternoon, so she left early, but she was with me when I really needed someone, and I'm still trying to figure out how to show my gratitude to her.  "Pay it forward" I guess.  After his 8 hours was up, I fed Daniel and then we went up to see Jonathan.  Yes, I was (justifiably) worried, and he was surprised when I told him that we'd be back in the morning so Daniel could donate more. The way it was explained to me is that because Jonathan is bigger and outweighs (or outweighed) Daniel at that time that he'd need more than what could be donated in an 8 hour period. The drive home was uneventful, but as soon as I got home, I had to drive Shilo back to work. I got home at 8PM and was asleep by 8:30.

Bone Marrow Donation Day 2 (3-9)

 Up at the buttcrack of dawn (5:45AM) and pretty much repeated the previous morning except the traffic was better, and I felt a little more confident and relaxed than the previous morning. I also knew that my girlfriend wasn't going to be with me until the afternoon, and that she would have her Dominant in tow as well. Since my stress level was low, I was actually able to enjoy the day and I visited Jonathan at lunchtime so he could get me food (at his insistence) and by the time I got back, my friends had arrived.  We had a relaxing conversation and when Daniel was finished, we all went to visit Jonathan to wait for the bone marrow transplant. They stayed for just a little while, but Jonathan's face lit up when he saw them, and, in turn, it made me happy.

The Bone Marrow Transplant (3-9) and Aftermath

The transplant was actually much less intense and exciting than I thought it would be. The oncologist came in and talked to us (including Jonathan's girlfriend) about how it is done (the same as a blood transfusion)and signs to look for.  Halfway through the first bag, I took Daniel home so he could recover from the excitement from the past two days. I woke up briefly at 8AM and gave Daniel his meds, and then slept until around 3PM. When I called Jonathan, he was very weak and sick feeling.

The Days Following

Because he was feeling so bad, I held off on calling Jonathan directly (I called the nursing station instead) until Saturday afternoon (3-12) and I told him I'd be there Sunday at 4:30. My ex-husband was leaving as I arrived, so I said a brief "hello" as he walked out. By this time, Jonathan had gone 2 weeks without adequate nutrition due to the vomiting, and the oncologist explained that he would be giving Jonathan the necessary nutrients via his IV.

The Past Week

I knew that Jonathan was feeling rotten, so I only called him and spoke to him twice. I took Daniel with me yesterday (3-20) and we arrived at 4:30 and stayed an hour with him. The change in the past week is remarkable (and not in a good way)  Jonathan is VERY sick, unable to eat anything. He's getting nutrients via IV to keep him alive, and he had a platelet transfusion early Sunday morning, and he will get another PLUS a regular blood transfusion early this morning (about 3AM)

Ask me if I'm worried? Well, a little bit. He hasn't been able to eat and hold down regular food for 3 weeks, and if he gets out of bed, he vomits. For the first time since his original diagnosis in October (5 months ago) he talked to me about dying, only this time instead of crying and saying he didn't want to die, he spoke about it in a very matter of fact way. I can't even express how much it disturbed me.  He also told me that he's tired of most people and that he was glad I didn't call him every day because all he wants to do is sleep. I told him that I will visit him every Sunday at 4:30 because it's the most convenient day for both of us.

My Thoughts

I'm thinking of meeting up with my ex-husband later in the week (after Wednesday) and discussing my concerns with him. I realize it won't change anything, but I think in this case, we really need to present a united front. I don't think he understands just how serious this is. I'm wondering if Jonathan made arrangements for when he dies (I mean, we're all going to die eventually) and I'm not even sure how to approach it. Parents shouldn't even have to think about stuff like this. Still, with Jonathan failing and his attitude, I have no choice but to consider this.

The Bright Side

Yes, there's a bright side! There is a good chance that this is temporary and Jonathan could get through this hell in the next few weeks and even have a full recovery. This is "just" a waiting game while his body adjusts to (yet another) change.

I saw my (new) Therapist/Doctor on Friday and I'm down to 201 lbs. I'm not dieting or starving myself, but I've changed what and how often I eat, and it's paying off. I really dislike changing Therapists, but my last one retired in January. Maybe the discomfort is related to having to open up to someone new. I don't hide my lifestyle, and sometimes they can be unintentionally judgey. Her only questions were about jealousy and/or abuse. I think I answered her concerns to her satisfaction.

Finally, Daniel hasn't had any issues/side effects from giving his donation, so he will be going home tomorrow (Tuesday) night. I think the past 3 weeks have been difficult on him because he misses his school. Also, in the remote possibility he has to do this again, he won't have to stay with me so long. We were extra-cautious because of his seizure disorder, but since it was so easy, we won't be as worried.

Now I can go to bed.

Monday, March 7, 2016

Last-Minute Update

Tomorrow morning, Daniel goes in to City of Hope for the bone marrow donation, He has been receiving daily injections of Neupogen from me, and tonight, because I was otherwise tied up, he injected himself. I can't begin to share how proud of him I am. He's been taking this very seriously, knowing that this could save Jonathan's life.

So, what's the change? Apparently, Jonathan won't be getting the transplant tomorrow after all. It seems that there's some additional processing/testing Daniel's bone marrow will need to go through, so Jonathan will get the transplant on Wednesday instead.  I'll find out what time Wednesday before I leave City of Hope tomorrow.

In the meantime, please keep my family (especially Jonathan and Daniel) in your thoughts and prayers,


Thursday, March 3, 2016

Over The River And Into The Woods (3-3-16)

I haven't written much lately about my son Jonathan. Since his release from City of Hope on January 29th, things have been somewhat quiet. I've taken Daniel (AKA: Child #4) there for consults because he's the only sibling that was a 100% match, and that in itself was a miracle. Still, there has been lots to do in preparation for the bone marrow donation and transplant. I drove Jonathan back to City of Hope on Monday (2-29), so they could prepare him for the transplant. Part of this is receiving radiation 4 times a day, plus strong chemotherapy. This will effectively kill all his immunity to illness, but it will also ensure that Daniel's bone marrow will be able to do it's job when Jonathan gets the transplant.

For the past 2 ½ weeks, Daniel has been on a high protein, low fat diet, and has been taking multivitamins with iron, and calcium supplements in addition to his regularly prescribed medication, which includes B-6 and D-3. He's also had to increase his fluid intake. This means I have to constantly remind him to drink both water and milk. Then he complains about needing to use the bathroom. Still, he understands how important it is for him to do all this, and he knows I'm on him about this because Jonathan's life is at stake.

I will repeat it again: 

Jonathan's life is at stake!  As a Mother, it scares the shit out of me. Even with all the treatments, blood transfusions, chemotherapy, and soon-to-be bone marrow transplant, Jonathan might die. Yes, he was able to walk by the river, but he's gone right back into the dark woods! The emotional ups and downs have left me feeling shattered at times. Still, right now, I have to be strong and put on my “brave mommy face.” I don't have time to be sad, feel vulnerable, or even cry. Honestly, I'm not sure if I could cry. I've cried so much since that day in early October, that I wonder if I even have tears left.

So, here we are. After I took Jonathan to City of Hope, I picked up Daniel and he will be with me until about March 20th. Tomorrow (Friday 3-4) we will go to City of Hope so we can start the process so Daniel can donate his bone marrow. Every day until Monday, I will be injecting Daniel with Neupogen so his bones will produce bone marrow stem cells. On Tuesday morning, I will take him to City of Hope where they will harvest those cells by taking blood from him. This will take about 8 hours. I can stay with him the whole time, but I'm not sure if I'll be able to handle the stress. For those of you who offered to sit with me in the beginning, and I politely turned you down, I think I'm ready to accept the offers now. Tuesday will be a LONG day, and the distraction will be most welcome.

Once the cells are removed, Jonathan will get the transplant via a transfusion. My plan is to stay until that is finished as well. I can't begin to express my gratitude for all the encouragement I've received from everyone and I'm reminded how fortunate I am. Still, I will take my chances, and ask for something more: If you are healthy and you have O+ blood, and you live in the Southern California area, and you are willing to donate blood on his behalf, please leave a comment, and I will tell you how you can help out Jonathan and people like him. If you are any other blood type, your help would be appreciated as well.